Brizzleys Chronicle

Fancy Dress Workout

2008-12-08T12:20:00.000-08:00

ROBBIE STUARTS FANCY DRESS WORKOUT IS COMING

Tuesday 16th December, Redwood Country Club, Beggar Bush Lane, Failand
Kick-off: Heat 1 - 19.30 (Entries already sold out)

Organised by Robbie's formidable rugby club, Old Bristolians, this fundraising event will be quite a spectacle with prizes not only for best time but also best turned out.

Further details can be found:
http://islunacycontagious.blogspot.com/

Please come along to support the commited athletes and help raise some well deserved money for CLIC Sargent.

Look forward to seeing you there

Iain

Robbie's Funeral Arrangements

2008-11-11T02:42:00.000-08:00

Dear All

Firstly I must thank all Robbie's friends that have offered their support to us within the last few days, it is hard to imagine anyone but Robbie having such a volume of loyal friends.

We have now managed to get details of Robs funeral:

Date: Wednesday 19th November 2008
Time: 2pm
Location: Canford Cemetry, Canford Lane, Westbury-On-Trym, Bristol,BS9 3PQ

Reception to follow at Racks, St Pauls Road, Clifton, Bristol, BS8 1LX

The day is a celebration of Robs life and there will certainly be no black tie or sombre suits, being Robbie fancy dress is more than welcome.

Rob wasn't much for flowers and in the last 13months has spent a great deal of his time raising money for his charity of choice, CLIC Sargent, and so I would greatly appreciate that money that would have otherwise been spent on flowers be donated to charity either on the following link or buckets that will be available at Racks on the day:
http://www.justgiving.com/robbiestuart1

We look forward to seeing all of you soon and only hope we can give him the send off he deserves.

Thank you

The Stuart Family
email: stuart.iain@yahoo.co.uk

Man of Steel

2008-11-08T13:34:00.000-08:00

The brave and strong Robbie peacefully passed away today. He specifically requested to send you his last message

"Thank you for all your support and friendship. I lived my life to the full and count myself lucky to have known you. I hope you will remember me in as good light as I remember you.

Love you all"

Robbie

We all want to give Rob a massive send off and although no details have been made yet as to funeral arrangements there will certainly be no sombre suits or black ties- fancy dress optional. His spirit will always be with us. Details of this will be updated here shortly.

Proud brother and sister

Iain and Hel

All Aboard Noahs Ark!!

2008-10-25T10:17:00.000-07:00

Since the last update I have been waiting for some good news. The experimental drug should have taken effect. Hopefully the TTP will have been defeated and I can move on the the top up transplant and a recovery of blood counts. I am really hopeful that this will be the case. But am also aware from experience anything can happen.

I am now seeing the doctors on a more regular basis after complaining, but they only know enough to deal with my minor niggles. To their credit they are trying to move forward some of the niggles that I am having.

First of all I have a problem with a large ulcer on my tongue. This has been caused by my mouth swelling\face swelling up because of the steroids I am on. I am biting my tongue.. I have been referred to the dental hospital who have sanded down a sharp tooth and given me a gum shield to wear at night. At present this has not done any good but with any luck will sort it out over the next week.

The second problem is my leg. It is still causing me problems.. but the doctors have now arranged some physio. Slightly more worrying is the potential cause of the problem. Once again the intensive treatment of drugs and radiotherapy may have caused some permanent damage to my hip (the strength of the bone). Worse case scenario would be a hip transplant!!! I personally think this is quite unlikely and the issues I am having are partly due to the drugs and water retention caused by the steroids and then due to muscle deterioration.

I see a few other doctors but for the big picture I need to see Prof Marks. He proves very illusive but eventually I get to see him. He confirms that the experimental drug so far has not done anything but explains that it may have a delayed reaction. Its been a over a week since my last dose so I would expect to see something happen fairly soon. In terms of the transplant it will take around 2 weeks to see if it has grafted. Back to the waiting game. The transplant itself when it finally happens is fairly straight forward. I do not suffer any immediate side effects but am left drained and fall asleep shortly after getting home. This lasts until Saturday morning.. I have a pounding headache and little energy but seem to start to recover in the afternoon.

This week has been a long week. I have been in hospital everyday apart from Tuesday. Each day I've been in from 8 until at least 5. Most of this time is waiting around. I have a set routine. Which I have decided that I need to change as I've started climbing the walls again. Its getting very frustrating.

Anyway the are some better things to talk about than hospital treatments. On the weekend Emma, Julie and Widget put on another fantastic party. The theme was Noahs ark. While I am still not drinking it was great fun. I went as a Lion but was out done by Oly Ladbrooks lobster and James B's homemade crocodile. The girls made a fantastic effort with homemade peacocks (I am not even going to ask where they got the feathers. I hope they did not go chasing them round some country estate but I would not put it passed them). The party went on until late in the night with the neighbours pulling the fuses in a attempt to finish the party. Cheers to the girls for a good night out.

On my day off (Tuesday) I went to see Alex, Amy & Alonzo. I could not get used to seeing Alex & Amy as parents. They have settled into it remarkably quickly, although I'm sure it may not seem that way to them. Baby Alonso seems so small and fragile, although the midwife says he has big hands.. they seem tiny to me. Alonzo has a fantastic smile and loves sucking on Alex's finger. He does not half fidget when he wants attention, building up muscles for his future rugby career. He does squats and press ups on Alex's chest. Don't think he is quite ready for a rugby ball yet, but I'm sure Alex will introduce it as soon as possible. Amy has started recovering very quickly. You would not guess she had just had a baby.

This weekend I am keeping it quite. My immune system has not just collapsed but completely disappeared so I'm been a bit of a bubble boy keeping myself away from people. I am feeling fairly run down but hoping we will get some positive news over the next 2 weeks and Decembers celebrations will be even more fun and meaningful.

Long term I have the Lions tour to look forward to. Also I have decided that I'm going to take up canoeing \ kayaking. The is also a charity cycle ride in Napal I would like to do. Before I can do any of this I need to get my body in shape.

Well done to Gav Hooper who completed cycling the Great Wall of China last week. I'm glad to hear some quotes from my blog inspired a few people on. The pictures look fantastic. If anyone wants to make a donation the is a link on the right hand side of the blog.

Also thanks to my Dad who was visiting this week and all those who sent messages of support for the transplant. It has not been an easy week and having the support their does make a huge difference to me.

Cheers

Robbie

Baby Boom

2008-10-14T04:41:00.000-07:00

This morning at 5:31 baby Alonzo Christopher Ellis Millard was born. This was followed at 9:40 by baby Douglas Higgs at 9:40. Congratulations to both the Millard family and Higgs. Both families are doing well and are taking well deserved rests. Does make you wonder what was happening 9 months ago??

I'm sure Alex & Amy and Wibbles and Emma will make fantastic parents. I could not be happier for both of them. I'm looking forward to meeting both Alonzo and Douglas. Although I don't want to be trusted in holding the babies yet. I'll just help out in wetting the babies head.

This news eclipses anything else that is going on, but I suppose I better give an update on how everything else is going. I still do not know if the new drug is having an effect. I have had some trouble getting doctors who know what they are talking about. They seem to have switched around who is meant to be looking after me on a day to day basis. This has caused confusion and I don't think they know who is doing what. When I do see one of these doctors they are unfamiliar with my specific problem (TTP is extremely rare so they need to be very familiar with my notes). What is happening at the moment is the nurses give me my test results and we have a chat and tell the doctor what "top ups" I require. These are then signed off by the doctor without him even seeing me! I have made a complaint to sort this out, now is not the time to put up with doctors neglecting their duties. At the end of the day the only person who I think understands what is going on is Prof Marks. Unfortunately I won't be seeing him until Friday.

I am still having issues with my joints. This is getting very frustrating as I really want to get on with rehabilitation but am having to take painkillers to just get around. I believe this is due to some of the drugs I am on, so hopefully in the next week or so they will be dropped after my top up transplant. However apart from that I've been feeling quite well. I am still hoping to be back at work soon, although from past experience I am not going to get my hopes up to much yet.. the is a lot that can happen still.

I have still been keeping busy outside of hospital. I seem to have taken on the role of barkeep at the rugby club. As well as doing this I managed to get out in the sun to watch the 2's and 3's play on the weekend. My immune system has not been behaving itself recently so I've had to be a little careful.

Date for your diary's: 31st January 09. A celebration of a year since my original transplant and my birthday. Details to be confirmed.

Hope all is well with everyone.

Robbie

Anniversary

2008-10-05T10:10:00.000-07:00

It was the 6th October 07 that I was diagnosed. How time flys by. How things have changed. Initially I was told it would take about a year for me to get back to work, I was confident that it would not take that long and even thought I might be able to be back playing rugby in November and go touring to Dubai. While I always knew it would be tough and a long haul I still underestimated the effects it would have. I have been given the ok to start exercising again, I have no strength, cardio\circulation is poor and my body seems to take ages to recover. Reluctantly I accept I won't be playing rugby this season, but however with the top up of stem cells on the 24th hopefully I'll be back in work in November. While I am frustrated my life is not back on track I have to remind myself a year ago I was told I had a 50/50 chance.

In terms of treatment it is to early to say what the new drug is doing. I have been up and down all week. I am having some serious issues with my joints. While I tend to try and avoid painkillers I have had to start taking them to get around and sleep. Its not clear what causes this it is annoying as it is slowing my progress in getting exercising.

I am still in hospital nearly everyday. But this week I manage to get Tuesday of. Amy pops round after lunch (she is also of work on maternity leave). Its good to have company on my day of and we head to the cinema for the afternoon. After Alex (Amy's other half) arrives and we head for a curry.. I think the waiters get a little scared when they see the size of Amy's bumb. I'm sure the curry probably should have been hotter but they did not want to risk setting Amy off. Meanwhile we are still awaiting news of Wibbles and Emma's baby.

Wednesday I get some more good news. I have a provisional transplant date of the 24th October. Once I get this "top up" of stem cells hopefully my body will start producing enough blood to support itself. I would anticipate if the are no further complications I could get back to work 2/3 weeks after this. While I am still on to many drugs to drive I intend to start looking for a car again this month. I hope I'm not getting ahead of myself again. While I do not know if the new drug is doing its job yet I feel the treatment is progressing and apart from my joint problems I am feeling pretty good.

To celebrate (I think) I went to watch Bristol vs Saracens on Wednesday night. Bristol slipped to their 5th straight defeat. Whats worse for the 2nd game in a row they could have won it. A typical example of a team without confidence. Brizzley Bear got to wonder round with Miss Bristol (In all my 5 years of doing Brizzley they never arranged that for me) and the were cheerleaders who were quite funny. Bristol need to start winning if they are going to avoid relegation this season.

Friday night is Murder Mystery at the Palace (Emily, Julies and Widgets house) its Las Vegas theme and I am assigned Al Shuckup a Elvis impersonater. The girls have put in some serious effort they all look fantastic. The murder mystery is a little confusing. I think everyone gets lost fairly quickly. We have a tasty dinner and carry on with the murder mystery. We have a bit of a mess up, just before the final round where we all make our accusations we play the video expecting another clue... but it reveals who the murderer was. Somehow half the group still make incorrect accusations??

I went to watch OB's on Saturday vs Aretians. My leg seizes up and I have to head inside to sit down. Unfortunately the game turns when I do this and OB's go from leading and then end up losing 22 - 18. I have forgotten my painkillers so have to put up with it. The bar staff have not turned up so I also end up running the bar. In the evening I head to the oak and catch up with the other OB's. Heading home after last orders leaving everyone else to head down to Clifton Triangle.

St Mary's ladies are playing on Saturday. Emily, Julie and Widget have been supporting OB's each weekend and helping cook food and run the bar. The least we could do is go and support them. After a good start St Marys take a lead with forward dominated play, however Worcester come back with some quick backs taking advantage of a disorganised defence for Worcester to win confortably in the end. Widget breaks her ankle!! I think it is just chipped but get well soon.

Hopefully I'll find out how the new treatment is going this week. It may be that I need to restart the super cyro drug again. This would mean I have to be in everyday including the weekends again. Will have to wait and see again. If this works and the top up transplant is successful I entre the next stage of recovery. While this may involve less blood counts and fewer visits to hospital it is actually more of a mental challenge. You get no say in getting Leukaemia and how it effects you. You have to accept it and deal with each challenge as they come along. The next stage of recovery is different. It would be easy to sit back and think that is it. But its not at all.. You have to accept that Leukaemia has changed your life for ever.. you can't expect to step back into your old life. It will take me another year to get to a reasonable level of fitness and probably a little longer to get back to how fit I would want to be. The same applies to getting back to work. I cannot rush these things but I am looking forward to making progress. The past year has gone so quickly, so before you know it I will be back!!

Still good luck to Wibbles & Emma, Alex & Amy who are expecting very shortly.

Guinea Pig

2008-09-30T03:55:00.000-07:00

The new drug is signed off and due to start on Thursday. The side effects are been talked up, but the truth is they have no idea what effect it will have on me. Its only been tried on a handful of people before.. Apart from getting sea sick after taking some anti-sickness tablets I have not had any allergic reactions to any of the other drugs they have given me (fingers crossed this will continue).

Thursday comes quickly and I am in early. They give me various infusions to try limit any reactions I may have to the drug. After the drug is infused I have to wait around for at least 2 hours to see if I react. I have a minor reaction of getting short of breath but nothing serious. As a result I have to stick around a little longer. Now its back again to the waiting game to see if it works? It may take a week or so to see the results.

Thank you for all your messages of support. I received a dozen of them just as I was about to start the new drug. Not only did it make me look incrediably popular in front of the nurses it gave me a very welcome boost.

Iain finally got around to celebrating his 30th birthday in Bristol on Friday night. It got a little messy. The was a good turn out in the Mall and Iain was plied with shots followed by a customary trip to the Corrie Tap for an exhibition cider or 2. We got to Clifton Triangle and Iain was in a little trouble, unfortunately his night ended early and we took him home around 11. Although was not the only person to miss rowing training on Saturday morning.

It got a even more eventful later on that night. Back out in a club called La Rocca we witnessed 2 people get glassed. Normally this club is quite quiet and I have never seen any trouble in there before. One of Iain's mates who was staying at mine had to give a police statement which took a hour or so. We ended up getting a lift home in a Police Van at 5am!

Saturday was also going to be a busy. It was Ollie Boulter's wedding on the Isle Of Wight. That meant the was no lie in for me and it was up early to get there in time. Really should have had an early night on Friday. Timing was perfect... we ran late and were going to miss the ferry, but it was also running late so we got there in time.

The church was fantastic and both Ollie and Cat looked fantastic. The reception was good food, good speechs and some very cheesy music. MC Hammer and Vanilla Ice were played but I still can't do the dancing justice... but I tried. It was a really good day and night. Congratulations to Ollie and Cat & thanks to both their families for the hospitality. Also thanks to Dean & Sarah for getting me there & back.

It was good to have a weekend off hospital, but I have knackered myself out. Joints have seized up again (this is also probably due to an adjustment in my drugs). I am back to some heavy duty painkillers to help me get around. I see the professor on Wednesday to get an update on where things stand and more of the experimental drug on Thursday. But generally blood counts are ok and I am feeling upbeat and postive about how things are going. I am still trying to have a normalish social life outside of hospital. I really want to start been able to do some training.. I have put on a fair bit of weight and am looking a bit chubby, while I need to put on the weight I need to start building up the muscles again. Hopefully I will be able to do this over the next week or so... Otherwise I better cut down on the pies.

Lastly good luck to Wibbles & Emma who are expecting their first child any time now. Looking forward to seeing what you decide to call it (Wibbles: Goliath is unique, but I don't think Emma will let you name your child that).

Cheers

Robbie

Stop Press... Good News Day

2008-09-22T11:35:00.000-07:00

Still in everyday for treatment, still waiting to find out if donor agrees to give me a top up, still waiting to find out if experimental drug gets approval. I would say I’ve settled into a routine this may be true for when I arrive at the hospital but each day I need a different top up so I can either be in 8am until lunchtime or in until 6pm if I need a lot of work done. So I cannot plan anything for the afternoons.

My parents and brother return from the Lake District on Monday. It sounds like everyone had a good time. They did quite a bit of walking so I think I would have held them back if I had gone. At the end of the day treatment had to take priority, Next weekend is Ollie Boulters wedding, I am hoping I will have finished with the daily treatment by then, however this may not happen. I will be quite annoyed if I miss this wedding… but treatment has to take priority! I have already asked the doctors but I think it’s going to come down to what my counts do in the coming week.

With my parents around I have more access to transport. In making use of this we go to Bristol Zoo. Its improved a lot since I last went (probably when I was about 8). I think we picked a bad time of day to visit. The animals had all just been fed and decided to hide and have a sleep. It was like playing where’s Wally to spot a lot of the animals. The seals were quite good as were the gorillas.

On Friday I go in for the standard treatment. I do however get some good news for the weekend. My donor has agreed to give me a top up. I thought they probably would, but its good to get it confirmed. I will never know who the donor is but I owe them so much. The time scales still need worked out but I’d anticipate I’d get the transplant within the next 3-4 weeks now. Fantastic news. Hopefully I’ll get good news on the experimental drug early next week.

To keep myself sane I am trying to get out and about as much as possible. On Friday I go to watch Bristol Rugby vs. Sale. On the previous 2 games and the players on paper Bristol should lose quite heavily. It is a close game ending 9 – 6 to Sale. Bristol should have won they had 60-70% possession but did not take their chances. Dan Ward-Smith showed signs of returning to form, and Neil Brew seemed to sort out the problems in the centres. The is hope for Bristol but they need to get a few results on the board otherwise they could find themselves in trouble at the end of the season. Brizzley bear was still rubbish. Their won’t be much competition when I’m fit again to return. After the rugby we go for a curry at Joy Raj. Was a good night, although the curry was not that good, the company made up for it.

Saturdays plan depended on how much time I had to spend in hospital. I was hoping to make full use of the sunshine and go and watch OB’s play at home vs. Painswick. For this to happen I needed to be out of hospital around lunchtime. If I needed any top ups then this would not happen. Lucky enough my counts were good and I could get out in time. I’m not sure if Painswick were poor or OB’s were good. But we won.

From the rugby I went straight to meet Jack, Dean & Sarah and Charlotte & Andrew. We were heading out for dinner. We ended up heading to the Bentley in Clifton village. It was very good food and was a very good night. I had a few drinks, which I think were well deserved after the last few weeks.

I am back in hospital on Sunday. That is 3 weeks of been in everyday. It is very boring but with the donor agreeing and if I get a decision on the drug soon then the TTP will hopefully be beaten. Then I can get back on track to recovering.

Its now Monday night, I could not post the update last night but have some fantastic news today which makes the delay worthwhile. I have got approval for the new drug, treatment starts this week and will last 4 weeks. After this I will get the top up from the donor. Provided the are no further complications this will sort me out. From experience I'm not going to talk about timescales but this is a massive step forward from where I was 1 week ago.

While I'm not talking about timescales to stopping regular treatment and getting back to normal, I am assuming that I'll be out by the end of January\early February. This will coincide roughly with when I had my initial transplant. I will be booking Racks for a celebration hopefully with Charlie Brooking's band playing. So watch out for a invite.

Daily Slog

2008-09-14T00:33:00.000-07:00

38 people took part in OB's pub golf. It was carnage. My outfit went down very well. Like stag do's pub golf is difficult without drinking\taking part. It was carnage and I left them to it after 9 holes.

Saturday was more civilised but still quite funny. I was in hospital in the morning and had arranged to meet people for breakfast around 12:30. From there we were going to head straight to the ground. People were meant to be going as cheerleaders. The only chance I had to get into my outfit was at the hospital. I had a very tight wonder women outfit. The nurses appreciated this. After turning up at POSH for breakfast I realised no one else had bothered dressing up for it. The outfit confused went down fairly well at the rugby but I was glad to get it off after as it was giving me a huge wedgie.

I had worried my parents describing TTP to them. They come over on Tuesday night. We have a meeting on Wednesday with Professor Marks and he goes through what my issues are again. No real surprises, although they are still not 100% certain what is going on. Despite the seriousness of what Prof Marks is saying it is hard to take him that seriously as the only chair he could find is a toddlers chair. The current treatment I am on is only to maintain my current position, apparently it won't stop the problem. That is up to my own body or the is a experimental drug with a very high success rate which could be tried. This however is not on the NHS approved list and would require additional funding. Fingers crossed I can get this.

My Dad has planned a weekend away in the lake district as it is my Mum's, Brothers (30th) and Sisters birthday. The lake district was a interesting choice as I can't climb hills at the moment. I would have ended up been a burden on everyone else as they would have either had to leave me in the pub or other things to do other than walking. In the end it did not matter as I needed treatment on the weekend so I could not go anyway. While I was not that disappointed to miss out on the lake district I was disappointed not to be able catch up with Helen (my sister).

I have been in hospital everyday including weekends for the last 2 weeks. I am very bored of hospital. I am in on Saturday but hope to be out to watch OB's play rugby in the afternoon. For once the suns out and its a perfect day for rugby. As usual whenever you plan anything something happens to get in the way. It is decided that I need blood top ups and platelets. I end up been in hospital until around 4:30. The first sunny day in 2 months and I'm stuck inside. Its so frustrating.

I'm in hospital right now. Hopefully I will be able to get out for the afternoon. My body does seem to be repairing itself but it looks like I have another 4/5 weeks of treatment. It will take at least this long to get the doner to donate more stem cells. While I was hoping to be back at work and putting my life back on track by now it is now looking unlikely like I'll be back until November\December. My arms and legs are now incredibly skinny. When I was wearing the wonder women outfit I had far to many girls complement me on my legs.

While it is pain been in hospital so much, it is a means to a end. Once I have sorted out this TTP and had a top up of my graft I will hopefully be set free. Apart from my leg the Leukaemia and TTP have left me fairly unscathed. For that I am grateful and once set free from hospital treatments I can set about getting myself back into shape. I am looking forward to been able to push myself in the gym\running and getting back to work. Its just a question of when can I start and trying not to overdo it. Hopefully this is just around the corner? Fingers crossed.

Prize Fighter

2008-09-06T00:45:00.000-07:00

I had not realised I'd left it so long since I last updated the blog. For that I apologise. I can reassure you that I am still ok, although I have some new challenges to deal with.

First of all Ollie Boulters stag... I was not sure I was going to be able to make it. Counts were bad in the build up and I was in hospital everyday of the week leading up to it. Ollie is one of my close mates from Uni who I defiantly don't catch up with enough. After missing Stokesy wedding I really did not want to miss Ollies stag do as well. But at the end of the day the decision if I could go would depend on Fridays blood counts... I needed a immune system. My doctor was an absolute legend (she thought I was going to Bournemouth for a civilised weekend) and decided that she would give me top ups of all bloods on Friday morning so I would feel\have cover for the weekend and be able to travel to Bournemouth. I'd been talking about it all week with the nurses in the hospital. I'd promised them I would not take part in the paintball or any other dangerous activities. The only person who did not know it was a stag do was the doctor.

In regards to the actual stag do, I'm not sure how much I can say. Simon (Ollies brother) had done us proud and booked us into a hotel run by 2 crack addicts. The activities were good. I actually did manage to take part in everything.. The paintball was with catapults and teams took turns running away while others shot them. I just did the shooting so did not get shot myself. We then did clay pigeon shooting.. I was rubbish.. I blame the drugs. Lastly the was a off road go-kart track. This was brilliant. I could have spent all day racing round in these buggy's. After we negotiated our way back through the gypsy camp it was straight out on the lash (although I was still not drinking). In terms of the nights out I managed to last the night both evenings although it is very wrong doing stag do's without drinking. I don't think I can say much more about the rest of the stag do.

It was bank holiday weekend so it was not until Tuesday that I was back in hospital. I was on a new drug which was hopefully going to cause my blood counts to recover. This treatment finished on Wednesday (27th). On Thursday it was decided that it had no effect. After discussions its decided that I need to up my steroid dosage... I had been tapering down and was on 5mg a day. This was now increased to 140mg a day. Steroids are evil. They effect your mood, co-ordination, sleep and appetite. I can't get any sleep, I start to get down partly due to low blood counts (everything is more effort when you have little oxygen in your blood). Not knowing what is going on with your own body is extremely frustrating, and doctors not been able to give answers is not helping. Having hospital all dayers with little progress is starting to get to me.

The weekend brings the first serious rugby of the season. OB's are competing in a tournament at Bristol Barbarians. OB's on paper were one of the top 4 sides in the tournament. They did not disappoint and got through to the final. I think the team had run out of steam by the final as they were beaten by Aretians. A great effort playing 6, winning 4, drawing 1 and losing in the final. The draw was also against Aretians, we now know what to expect in the league so hopefully we can take revenge during the season.

Professor Marks was back from holidays on Monday. Hopefully he will give some better direction to my treatment and maybe I'll get some answers. I'm booked in for a lengthy look over on Tuesday. He still believes that I have TTP. Even the prof struggles to explain what this is. It is extremely complicated but amounts to my veins turning against me and destroying my own blood. My graft is thin so is not producing enough blood to replace what is been destroyed, hence my blood counts keep collapsing. The are 2 things that need to be done. Fix my veins and try and get my donor to give me a top up of stem cells so my bone marrow can produce more blood. I'm put on another treatment of plasma cells to try and fix my veins. This treatment once again means that I'll be in hospital everyday. Treatment starts Wednesday. Hopefully this will get me back on track.

Whilst I had been down, I have managed to pick myself up again. I've already beaten 5 different types of Leukaemia and a hospital superbug. If I was a boxer on my track record you would have me down to win. I may get knocked down but I'm back up again. As I said earlier I had let the constant treatment get me down. I remind myself of the success of the charity auctions, success of dodgeball all while I was fighting Leukaemia. I need a new challenge, I need to feel like I'm still achieving something. This time I want a personal challenge. Unfortunately fun runs and exercise based challenges are out as they will only promote the destruction of my blood. I had thought of doing a triathlon based challenge (spread the distances over a week rather than do in 1 go), but the doctors would never allow it. Any ideas\challenges welcome! My positive outlook starts to return.

The weekend approaching brings Steves house party, OB's pub golf and Bristol vs Bath. I have another distraction and massive cheerup. Its fancy dress!!!

Only Steves houseparty is not fancy dress. Me, Iain and Vicky pop along Friday night. I introduce them to Shoe Jenga. This is a game where everyone removes their shoes and places in a pile. 1 shoe is then placed in the middle of the room. Everyone takes a turn in trying to balance a shoe on top of the previous shoe. A shoe tower is formed and whomever knocks it over loses. Back home by 11 to rest up for the next day.

Its Saturday. I still have to go to hospital. Its pub golf tonight and my outfit needs a few final touches. I won't be drinking tonight but acting as course photographer. Its should be a great night out. Sunday is Bristol vs Bath. We are going to this in fancy dress as well. When I say we... I really hope I'm not been stitched up. The theme is cheerleaders and I can see me been the only 1. What would make it worse is the outfit I've got is a little to small, it does not leave much to the imagination. Also to make it more interesting, I will be in hospital in the morning and will be pushed for time to get to the arranged breakfast in time. So I need to have my fancy dress ready in hospital. The nurses are going to be treated to me been dressed as a wondergirl cheerleader (with a obscene short skirt) as I leave on Sunday! So the weekend should be entertaining to say the least. Depending on how bad my outfit is I'll put some photos up next week.

So I have plenty to smile about. But what has really made me smile this week is the support of everyone around me. Word spread that I was not doing that well again. People have rallied around me once again. Particularly thank you to Julia, Julie, Phillipa, Katie, Monty, Oly L & Iain.

Lastly... does anyone have any good ideas for Mothers birthdays?

I'll update by blog when I can after the weekend, but when I'm in hospital 8am until 6 it is difficult as I'm fairly run down by the time I get home.

Cheers

Robbie

Fairground Attraction

2008-08-20T10:51:00.000-07:00

It turns out that its not just Milk Link who have been missing my regular blog updates. Many thanks for every ones messages.

Continuing from the last blog my blood counts have got even more random. First of all they continued the pattern of either having red blood cells and not having white blood cells. However on Thursday my blood counts completely collapsed. Red Blood cells disappeared and my immune system crashed (white blood cells disappeared) as well as platelets going wondering. Usually you go into to hospital and get blood tests and one of the doctors will come and look you over. You know something is up when you get multiple doctors\professors. Quantity of doctors does not necessarily mean that you get answers. The professor is convinced I have a problem with my veins which could be quite serious. The other 2 doctors are convinced its something else but don't know what. Either way they arrange some fairly hardcore treatment for me on the Monday. I need to have a minimum of a 9 hour drip on Monday and probably every day next week.

The blood count collapse as well as the need to be in hospital 8am Monday morning unfortunately means that heading to Stokesys wedding is not an option. I would have had to get the train across London Monday morning including a trip on the tube, this is to dangerous for my immune system and I doubt I'd make it to the hospital in time. Also with no red blood cells I would get tired very quickly and if I was over active it could be a little dangerous. Bugger I can't go. I don't like missing friends big events but in this case I have to consider my health first.

I did manage to pop out on Saturday night. This was more of a fact that I can't bare to sit in on a Saturday night. Took it easy sitting in the corners of Racks avoiding crowds. Chatted to several people I have not seen for awhile. Was a well needed distraction from the weeks activities and did some good in relieving the annoyance at missing Stokesys wedding.

As long as I know that I have to be in I don't really mind, its all part of the course. The Olympics have provided a brilliant distraction while in hospital anyway. Its been called in unexpected or ending up in hospital longer than you think that becomes annoying. When it happens the other way round its quite good. I'm sure the nurses have started to manage my expectations. Initially I was told that I was going to be in hospital until around 10 - 11ish (pm). With this news I sent round a speculative text to get some visitors in the evening. However I was released around 7ish. As a result instead of an evening in hospital I ended up going for dinner with the Millards, Julia and Will (King of Lao). A nice unexpected turn around. Tuesday I am meant to be be in all day. Again I get released early. I'm still however due in for at least another 2 days.

This weekend is Ollie Boulter's stag. I am hopefully going to be able to make it, but will have to make the call based on Thursdays blood counts. They have improved significantly this week but as has been proved over the last 2 weeks this can change each day. The only thing I can do is take things day by day and hope for the best. I really don't want to miss another big event of the summer but as I said earlier I may need to consider my health first. Fingers crossed.

Cheers for keeping reading, hope bad weather is not getting you down.. Summer is just around the corner.

Back By Popular Demand

2008-08-10T05:20:00.000-07:00

Due to demand from Milk Link the blog is back... Hopefully it is up to standard.

This week has seen my blood test results continue a random pattern. While my white blood cells have recovered my red blood cells have started to slide. As well as some of the other counts behaving erratically. I have also developed permanent pins and needles in my toes, but previous joint pains have disappeared. To fix one problem the doctors adjust 1 medication but this seems to have a knock on effect elsewhere. Its like a bit like a game of Kerplunk (I hope its not just me who remembers this game). None of the issues are serious and are not causing me any real difficulties day to day, but it would be nice if the doctors get the balance right and they are sorted. Until then I'm having to spend more time in hospital getting tested and receiving infusions than I'd really like.

On the positive side of medical treatment they repeated the test on my host vs graft %. It came back and confirmed the previous results of 100%, 100% and 100%. I expected this but it was reassuring to get this back. So overall everything is still heading in the right direction the are just a lot of little niggles to get through & none of the niggles are stopping me from doing anything so I have more to be happy with.

This week to start with looked like a quiet relaxing week. But it ended up been fairly busy. I was in hospital until around 6 on Monday. I ended up receiving platelets and having a bone marrow test. While I was waiting I got a call from Monty from the rugby club, they needed someone to help with training. I managed to get a few drills together for it but its difficult when you have not played or trained for a year and have no real idea what has been done to date or what themes have been worked on\towards. Whilst I thought the session was not great feedback was ok. But in all honesty the numbers were made up of 2nd and 3rd team players, the lack of senior players meant standards were not as high as I would expect. Also the was a severe lack of basic kit, not having enough balls to run 2 sets of drills!! As a result I found the entire evening frustrating and tiring. I leave the club quite concerned about the coming season without more of the 1st team we cannot expect to finish any better than last year.. do we really want to get relegated. Concerns are voiced and a meeting is then arranged to try and sort out. I am due to help out again on Wednesday, but end up spending most of the afternoon in hospital and with low red blood counts everything is a little harder work than usual I don't make it up and spend the evening relaxing.

I was hoping to go to Dubai this year. In theory to play in the 7's. I was hoping to be back to work by now. I am signed of until at least mid October.. Dubai is the end of November. First of all I'd expect to be back to work a few months before I was fit to play rugby.. so its unlikely I'll be in a state to play in the 7's. Also it would be taking the piss at work to return part time initially then go and play in a international semi professional rugby tournament. Whilst I hope I can return to work mid October I can't guarantee this. As the previous weeks fun and games with my drugs and the effects you can only take it day by day and I may still be receiving plenty of treatment or require regular testing still in November. I'm gutted I can't go but I have to be realistic and wait another year. The is a meeting on Thursday night to to discuss Dubai. I would have been down as a definite so feel like I need to tell Rob The Tan face to face that I can't make it. Its also a good excuse to get out the flat and socialise a little.

I am meeting my old work for lunch on Friday. It is really good to catch up with everyone, although I did not get the chance to talk to everyone. Anna is leaving.. I think everyone was still in shock at this. I had a nice piece of steak, I could have actually eaten 2 of them. They are about to move offices around again, but whilst the have been a few reshuffles the does not seem to have changed the general atmosphere.

Friday night I meet with a old school\uni friend. After a day of catching up with people I decide I don't like talking about the past experiences of my treatment. Even if you talk about some of the more positive aspects you are still talking about been in hospital been ill. It sounds like your after sympathy. I don't want anyones sympathy I have far more to be grateful for than not and would rather look to the future than back onto the past. However this is difficult when meeting people you don't see very often.

Saturday brings another stag-do. I had been debating whether to go all week. With blood counts been low the was no way I could handle the whole day which would have involved going to London, back out to Ascot, back to London and out in Clapham. Also I'd expect this stag do to be quite heavy drinking event. I am still on a self imposed drinking ban so the evening would be a waste of time anyway. It would still be a long day regardless getting the train to and from Ascot from Bristol. Eventually I make my mind up that its to good an opportunity to see Stokesy get messed up to miss out on. It was also meant to be 80's fancy dress. Ideal for me to use the MC Hammer outfit. I travel up in normal clothes and get changed in a bar in Ascot.. I was expecting everyone else to arrive within 5-10 mins but they turned up around a half hour later. You get some strange looks when your in a bar by yourself dressed as MC Hammer, this set the theme for the day. The others fancy dress (apart from Wibbles and the stags) was pretty poor. Me and Wibbles stood out by a mile. Well we did not get lost in the crowd. The amount of booze been drunk did not disappoint with the golf ball game catching out a few of the group in vicious fashion. The were going to be some early casualties.

I have never come away from the races with any winnings before. I had taken the race guide from the Times. It gave recommendations for each race. I decided to bet according to the guide, it was not just backing the favorites the odds were not bad on the horses. I won on the first race. £30 up. Lost the next 2 but then on the last race I won £110. Overall I ended the day £95 better off than I started. Must be the lucky MC Hammer pants. I had hoped to try some MC Hammer dancing at the 80's event after. It was however open air and the rain was persistent it was not much fun standing round in the rain listening to Belinda Carlisie. We left earlier than planned I had to rush to get the train to reading and could not find anywhere to get changed at Reading. The result was I travelled all the way back to Bristol as MC Hammer.. the train was full of Swansea fans heading back home which made it a little more interesting. I was knackered on my return and quickly fell asleep on the sofa. Unleashing the MC Hammer outfit and dancing will have to wait awhile longer.

What next week will bring I have no idea, see what the doctors change this time and what effect it has on me. Its still a patience game and I just have to take it day by day. I wonder if I can talk the doctors into scheduling appointments around the Olympics??

Mini Hammer

2008-08-03T10:21:00.000-07:00

I have a lot planned for this week. Especially Monday. I have been feeling well so should be able to get a lot done. I hope after having blood tests Monday morning to have lunch with the parents, visit physio and rejoin gym and in the evening it is the rugby club AGM. That was my plans...

The hospital had other ideas. I had an hour to spare before having lunch with my parents and had gone down the park. Just as I had made myself comfortable in the sun the hospital get in touch to ask me to come back in for Potassium top ups and a GSF injection. The potassium top up will take all afternoon. Meaning I won't be able to go for lunch, will have to cancel meetings with physio and manager at gym, and may struggle to make AGM. I had a potassium top up a few weeks ago and have a load of tablets in my flat. I'm convinced my potassium is low because of been in too much sun and not drinking water with any minerals in. Somehow I manage to convince the doctors of this so only need have the GSF injection. To my delight this gets done in 5 minutes and I'm able to carry on with my day as planned.

Alex M brings the MC Hammer parachute pants to the rugby club AGM for me. They are brilliant so put them on for the night. Its a little worrying that only 3 people from the rugby club comment on the trousers and everyone else considers it normal for me to be wearing the golden trousers.

I take it easy Tuesday but have been asked to meet some people from just giving on Wednesday night. Its not ideal as I know my immune system is very fragile (GSF injections are to boost white blood cell production, at present my white blood cell production has collapsed? I have no idea why, its very unusual and is the first time this has happened in around 3/4 months). I decide to go to the meeting and be careful of anything that could cause infections. They ask questions about the dodgeball fundraising and how I used just giving as well as some questions on what I thought just giving was. They paid £40 for it and fed me.

I expect the worse on my visit to hospital on Thursday. I've hardly been well behaved considering my immune system is not 100% and expect to have at least a Potassium infusion. I am starting to develop some symptoms of something going wrong. My legs are tired, bruising appearing without reason also I'm getting pins and needles in my toes. For some reason the circulation to my legs has been restricted?? I am reasonably happy to spend most of Thursday in hospital, hopefully this will mean I'll be back to normal for Dean & Sarah's wedding on Saturday. I had planned on going to the Young Professionals Summer Party but it becomes obvious that I will struggle to get out of hospital in time and I probably should not go anyway because of my immune system. Iain takes the ticket and probably needs a good night out more than I do anyway. The time in hospital passes fairly quickly with one of the nurses when not busy keeping me entertained with some magic tricks. Makes me laugh quite a lot I attempt a few without much success, but 1 works very well.

Thursdays test results were worse than Monday's. My legs had got worse on Friday and I'd started to develop headaches as well. While the was no doubt I'd make it to Dean & Sarahs wedding with this happening it would bring into question how much I'd be able to do. We travel up on Saturday and I feel a little rough. The hotel is not as impressive as it looked on the Internet, and the service booking in is not great. We meet Wibbles & Emma (+ a large bump) for lunch. Its overpriced and takes far to long. This causes us to be running behind time and a rush to get there. Considering I'm an usher this is not particularly good.

All however goes smoothly, we are there in time and Dean is not a nervous wreck. He looks brilliant in the full military uniform. Sarah arrives and looks fantastic. Both are have beaming smiles and look incredibly happy. Dean looks a little like Noddy.

The evening do goes just as smoothly. The speech's are good. Dean & Sarah both thank me for been their for them over the years. This seems silly to me as they have both been at my bedside over the last 9 months. Both have seen me at my worse and helped me remain positive and get through everything. I am so lucky to have such great friends.

Food is good and we have a good table. Banter is quite good. It gets to desert and we manage to convince the table to do NHD (a race to eat desert as quickly as possible without using your hands). I win our tables race but Jade is also quick. Even some of the elderly friends join in. It went down very well and 3 other tables followed our lead and did the same. Brilliant.

The DJ and the Cresswell clan have been told about my historic MC Hammer dancing. With my legs been the way they are I'm a little worried about trying to do this. Although I can try and dance without moving my legs it won't be the same. Early doors Vanilla Ice comes on and I end up trying to bodypop on the dance, it goes down very well but I knacker myself out. I can dance for 1 song then need a break. Luckily the DJ does me a favour and every other song is terrible giving me an excuse to sit down.

Deans nephew Kai picks up on the bodypopping and I end up teaching him some dance moves. I teach him one routine and he loves it. Over the night I teach him a few more moves. I've created a mini Robbie\Mini MC Hammer. He mirrors me on the dancefloor it is hilarious. He even does the worm and 1 arm press ups. He attempts the splits and rips his trousers.

My legs loosen up a little and while pacing myself I manage to do more dancing than I thought I would be able to do. Everyone is on fantastic form apart from the DJ who is bordering on been comically bad. It is a great night. As I'm not drinking Iain takes my place as been the drunkest person at the wedding. It is very funny watching people get steadily worse throughout the night. I still manage to have a great time and remain strong in not drinking although have the shakes all night.

My legs are sore the next day but not as bad as I was expecting. The bruising has spread to my arms and I keep getting cramp in my fingers. I don't think the doctors would be too happy with me this week, maybe this week I should listen to them and behave myself. The is a stag do in London next week. Looking at the itinerary I think I might struggle. It will be more important I make the wedding the week after. This will be a shame but going would just be asking for trouble and I would not be drinking anyway and Stokesy stag do will be one of the more vicious in this respect. A week off won't do me any harm.

I'm sure that the test results are just a minor hiccup. But until they clear up looks like I'll be in hospital a little more than I'd like. Generally however things are still good.. I got to enjoy 2 friends getting married and taught a little kid how to breakdance on the weekend. I am lucky to have been able to make it and having such good weekends means I'll be smiling all week.

The "Jazz"

2008-07-26T22:58:00.000-07:00

With my mojo back I've been walking around with a huge smile on my face. The smallest thing has been keeping me amused. I think the people of Westbury think I'm insane...

I have another meeting with Prof Marks. I still am having problems with my joints and still concerned about my kidneys. With my mojo back I'm keen for him to tell me I'm close to getting back to normal.. he nearly has the magic combination to get me back to work and normality. His answer is unfortunately disappointing and unhelpful. He says I'm still quite a way from been able to get back to normality and to get my bone marrow and immune system working will be about another 3 months... so I'm signed off for a further 3 months. Sh!t! Was not expecting that, was hoping for more like 3 weeks (I am ever the optimist).

Well I obviously need to update work. Despite seeing the majority of people at Dodgeball I felt I needed to show my face. After talking to Constellation I popped, timed to see a trading update as well. It was far more useful than talking on the phone and I was more relieved that everyone still knew who I was! It also proved another thing.. I am not ready to start work again. After half a day I was knackered. After heading home I fell asleep on the sofa, woke up for a hour or so and then had an early night. Prof Marks might actually be right (that's not to say I don't intend to try and prove him wrong and get back quicker). I do however feel a little guilty. I'm probably running at around 70% (with my Mojo) this is enough for me to socialise, go to weddings and stag do's (not drinking) do minor jobs but is not enough for me to return to work. I have enough to enjoy myself but not to do the work to pay for it. I should not complain too much. But everything feels so close, yet as proven by how half a day in the office effected me I am also so far away.

The big event of July is Chaz & Lexy's wedding. Both have been fantastic to me throughout my treatment. One of my most treasured possessions while in isolation was a photo album of various drunken nights in Bristol. Whenever I was feeling "isolated" I would get the photo album out to remind myself of what great friends I had outside the hospital and what I had to look forward to when I got out.

Every wedding I have ever been to reflects the couples character. Chaz & Lexys was no different. The church service was small and the Chaplin was unintentionally very funny (although this could have been me getting easily amused again). Lexy looked fantastic, Chaz was average thought he could have at least made an effort. The reception marque was decked out in ivy and in a classical theme (I don't think Laura will read the blog but I did promise to point it out to everyone and say what I fantastic job she had done). I ate enough food for around 4 people. It was strange not drinking.. but it meant everything seemed surprisingly civilised for awhile. I had to take my drugs around 8ish. They all make you drowsy, while not enough to make you fall asleep, enough to make you a bit sluggish and lose form quite quickly. I did not really want to sit around and watch the rest of the night so a solution was required as I was fading quickly. Most people who know me will know I don't usually drink any caffeine, this is not deliberate but I've never developed a taste for tea or coffee and I don't drink coca cola very often. The result is if I do drink it I go a little hyperactive. 3 cups of strong black coffee in 10 minutes and I was doing some break-bopping beats at double time on the dance floor. I think 3 cups was too much as I had the shakes and literally could not stay still for more than a few seconds. But I was having a lot of fun.. until I slipped on some spilt wine and ended up on my arse. The rest of the night was brilliant with Oly Gaudion providing some of the best entertainment in his dancing. He had the crowd eating out of his hand. Loved it.

My little fall had not hurt at the time. However I paid for it the next week. My hip completely seized up. I could barely move my left hand side of my body. I must have hit a nerve as it would effect every joint from knuckles to my ankle. Strangely my right hand side was completely unaffected. Sunday was bad, Monday was uncomfortable, Tuesday was torture, I barely made it out of bed. Been sods law by the time I saw the doctors on Wednesday it seemed to start to clear up only to return on Thursday. To sleep I was now having to take a combination of painkillers and sleeping tablets, to be honest they did not work. I have returned to the world of the ever awake (this actually might just be the 3 black coffees taking their time clearing from my system).

My parents were down the next week. It will be good to see them and it will give me transport to go do some more interesting things (head outside Westbury On Trym and Henleaze!). Turns out their timing to hear good news is perfect. They arrive Tuesday night and I have an appointment with Prof Marks on the Wednesday. The results of my bone marrow retest are back. This is the test that had proved inconclusive a few weeks before. They have 4 tests. 1 for leukaemia and 3 more testing the % of your bone marrow \ blood that is host or graft. The results were leukaemia: No Trace, test 1: 100% graft, test 2: 100% graft, test 3: 100% graft. I could jump over the moon. This is huge news. My old bone marrow can't be found. I now have a new system which is just settling in. Of course things can still go very wrong but this is massive step forward.

Wednesday night me, Iain and my Dad decided to do the local pub poker night. It was a perfect way to spend the evening. Sat outside playing poker, eventually by the light of a oil lantern. Also somehow I ended up winning the tournament?? It was only £3 to enter so I only won £13 back. But a win is a win and considering we thought the would be a local hustler it was very funny.

Thursday we went to Bath races, I was not so successful. My best result was my horse falling over before the start so I got a refund of my bet. But it was a very funny day out in the sun. Later on Thursday night I went out for dinner with a few friends it was turning out to be a busy but fun week.

Saturday was a scorcher. Managed to get a good group up on the downs and enjoyed a day in the sun. After was Spottys birthday. I managed to convince 1 person to turn up in fancy dress. It was priceless seeing their face when they realised no one else had dressed up. Had great night not drinking again. Really did not bother me, I went a little crazy on the dance floor, leg is starting to free itself up the break-bopping beats are getting better, a few basic Brizzley moves even came out. Still no worm, splits or cartwheels. Only problem is that I have now only had about 3 hours sleep in the last 3\4 days. Its getting a little silly now, although nice sunrise today!

Good luck to Ian & Matt who are still cycling the tour de france. The is a link to their blog on the right. What they are doing is insane so please support them.

Robbie

Next event: Sarah & Deans Wedding. Should be very good.

Wheres my Mojo??

2008-07-11T04:25:00.000-07:00

In my last post someone had stolen my Mojo. I was on a whinge, without my Mojo I could not MC Hammer. I was stuck in the corner spectating wondering what the next step would be. The end\new beginning had slipped from sight and lack of energy and motivation had begun to eat away at my strength. I was moving forward but at a crawl and allowing myself to feel sorry for myself. As I said I felt like a spectator in life, inspiration to get out of this situation comes in some very strange forms.

I was in hospital and the usual patients were around, but 1 extra appeared. I really don't mean to be cruel but this person was repulsive. She travelled on a mobility scooter, despite been more agile on her feet than I have been for months when getting up to get more chocolate. It was not just the appearance, she then sat down to tell everyone how bad she has had it for the last 5 years. She had let the disease take over every aspect of her life. I know she could walk... but she chose not to. She complained about putting on weight while eating half a pound of chocolate. It was not just me looking around for an exit to get away. However it turns out I have a lot to thank this person for. She gave me back my Mojo.... She had lost hers long ago and was doomed to a life of complaints and self pity. Never will I allow that to happen to me.

My resolve has returned, and if anything is stronger than it has ever been before. I needed to have a low to make me appreciate what was about to happen. My drugs were slightly adjusted again, not significantly but enough to make me feel a little better. The next day I got my bike out again and cycled along to the tour de france on eurosport. I had not got the bike out for a few weeks because I did not have the energy. I did not peddle hard but it felt good.

This morning I got the bike out again and peddled harder for an hour. While I was on the bike I thought about how good it would be to show up at rugby training and be able to take part. My thoughts drifted to how good it would be to be able to run again (I have not been able to run since September last year). Last time I tried I ended up flat on my face. That was over a month ago. It is better to try again and end up on my face than not to try again. So after cycling for an hour I wondered down to the park. I did an elaborate warm up and the local dog owners watched as they expected me speed of into the distance. What they got was far more special. I picked 2 landmark trees approximately 10 metres apart. I really did not know what would happen, will I end up face down or will I end up hobbling between trees.

I set off.. My right leg held... then the left did not buckle. I sprinted as fast as my legs would carry me. I covered 10 metres then 20 in around 30 seconds. I properly celebrated... Arms in the air and screamed out with joy. You would have thought I'd just won the Olympic gold. The crowd of dog lovers stared bemused and mothers with push chairs edged away nervously. I wanted to run after all of them and give them a hug. Unfortunately I was not quick enough. I found myself running round the small park stopping every 30/40 metres or so laughing, I had tiers running down my face. The is nothing I can't beat.. It is all in your mind. Hurdles are all in my head, they are all their to be knocked down. My Mojo is back. What have the doctors created!! I ran around the park until my legs hurt. Its 4 hours since then and I'm still smiling and looking for people to hug.

Anna: Thanks for your prayers... They were answered.

Time Standing Still

2008-07-08T09:37:00.000-07:00

Its been a month since my last post!! Apologies fir the delays, not sure if anyone is still reading it anyway?

So what did June bring. My last post detailed how I'd come of the clean diet and could enjoy a beer. Everything was looking up. Wedding season was about to begin, my leg was going to be sorted. All was going to be hunky dory within the month. Its such a shame that life does not work like that.

My leg has been fixed. I no longer have a hole to worry about. However I still am walking like a cripple. It will take awhile before I can get my dancing boots on and show of some moves. I was hoping to bring back MC Hammer at a few of the weddings. I had even started looking for MC Hammer parachute pants for additional comedy value.

I got the initial results of the bone marrow transplant. It found no leukaemia!!! However it did not find much bone marrow either. The sample needs redone. Last time I updated the blog I was nearly on top of the moon. I was able to train for a few hours a day, go for a walk and still have plenty of energy. I am not sure why but that has disappeared. I am lacking in energy again. It is usual for me to unintentionally have a afternoon snooze. I'll sit down to do some work\read paper etc and then find myself waking up as Iain comes home from work. Not good. This is unusual as my blood counts are generally getting better. I should have more energy! In my last post I was waiting for the Platelet counts to start grafting (this is usually the last part of the blood to graft). It now seems to be working.

However I have developed another problem. My kidneys have decided they don't like any of the drugs that are been used on me. I have quit drinking (booze indefinitely) and have to drink around 3 litres of water in order to flush through the toxins. Despite this my kidneys are still struggling. The doctors have warned me if this continues then the damage could be permanent. Last think I need is clear ALL and then have to live life on a dialysis machine. Bugger. All I can do is follow doctors orders and give myself the best possible chances.

Also I have developed a severe case of host vs graft disease in my skin. While I have had this before it has taken a few worrying turns. My skin occasionally is splitting open. I can be sat in the park\flat and suddenly blood starts appearing down my legs where skin has spontaneously split. I suppose its like having old womens veins? Luckily as I have platelets the bleeding stops quickly but its pretty minging. On Monday I insisted on getting this looked at specifically hopefully they will have some answers for me tomorrow. I did have a scare of host vs graft disease in the throat but it looks like this may have been a false alarm, as tests have now come back negative and I'm back to eating properly again.

Lastly I have developed another problem. My joints are all a mess. I have had to start taking strong painkillers as my joints are freezing up. I periodically throughout the day will find ankles, shoulders, fingers, elbows, knees will all go on protest. The painkillers I use don't seem to have much effect, I just have to wait for it to pass, sometimes it can be walked\shaken off, but sometimes that makes things far worse.

That's my medical whinge over with. Generally things are still heading in the right direction, but its so frustrating. I know full well to take everything day by day. But you just want to be given the all clear and told your body will be back to normal next week. When are they going to invent that magic pill?

The have been some fantastic things that have happened in the last month. The major event for me was the Bristol Charity Dodgeball. The tournament was oversubscribed. We got a great sponsorship deal from Constellation (my employer) and they also provided some fantastic prizes. Despite the initial stress of getting everything set up in the morning everything went to plan. The teams turned up in some classic fancy dress. All played in good humour and we raised over £4000 for CLIC Sargent. In addition to this Iain & Sarah (dirty) completed the cycle from Bristol to Paris. This raised a further £4000ish. I would love it if between us we could push this to £10,000. I may have to think of another challenge to get the extra £2000. But we have already started planning next years event, everyone seems to be keen to take part again. We may have a few alternate events in the planning as well. So watch this space.

Another friend (Ian Callaghan) is completing a insane challenge of following the tour de france. That's 3500 miles of cycling. He has trained really hard as you would expect. You can follow his blog on http://ianandmatt.blogspot.com/ and make donations.

That's the charity events covered. Its now time for stag do's and weddings. I have actually found that not drinking is not a huge problem. I am equally capable of making a fool out of myself sober than I am drunk. However what is causing me true frustration is the fact my leg still does not work properly, I get tired easily, steroids cause me to lose co-ordination. I cannot do what I want. I want to dance like MC Hammer, I want to be warned by the bouncers to stop doing the worm across the dance floor. I want to show girls how a bloke should pole dance. I want to be slide across the dancefloor doing a air guitar routine. I want to pick up a random girl spin them round tango fashion without fear my leg will buckle landing them on their head (ok I used to drop them every now and again because I was drunk). That's just what I want to be able to do on a night out. I want to be able to take part in rugby training. I want to feel sick after one of Ronan's beasting sessions. I want to be able to drive so I can do some random journeys and have some freedom. These are some of the more normal things I'd like to do, most of them very simple, believe me the is a huge list brewing of others. I don't want to worry about carrying all my pills with me. I want to be able to take part rather than spectate. I may not be in isolation but until I can start to reclaim my life back I may as well be. I feel trapped just watching the world go by, I can see everyone else moving on and I'm stuck in quicksand waiting for the specter of Leukaemia to release me.

Rant over.

Beer?

2008-05-29T10:27:00.000-07:00

I have had a meeting with Professor Marks, the 100 day milestone is the 28th June. The closer this date gets the more I think that it will be a false dawn as my drugs have not been reduced and the has not been much change over the last month. However I could not be proved more wrong. On the 21st May my restrictions on diet and where I could go were lifted. This means I can have steak and a beer!!! This was totally unexpected and welcome surprise. While I still need to be careful about what I eat it will be good not to be reliant on frozen food.

You won't be surprised that I was out for a beer the very next day. I had the watchful eye of my Dad making sure I did not consume to much. This was also followed by a nice bit of Steak. While this initially was going to be a quiet occasion I could not help mention it to several people. Before I knew it around 15 people were turning up to have a drink with me. It might be that I know a lot of alcoholics looking for any excuse for a drink. The drinks went down very easily but I did not go overboard and the was no hangover the morning after. Which was lucky as I had a meeting with the othopedic consultant.

I've been waiting for something to be done about my leg since January\February. It has been a long running saga and finally the doctors agree with me. It was what I was expecting around a month ago... I'm finally booked in to have an operation on my leg to remove the remainder of the scar tissue and seal up the hole in my leg. Having the operation does present me with some further risks... but so does leaving a open hole in my leg. I don't dread the operation but I am really not looking forward to the enforced stay in hospital. You would have thought I would be used to it, but last time I went in I did not emerge again for a few months. Hopefully this will be a short stay this time.

Other progress is that I can start work from home. This is fantastic news. While working from home is very strange and the are plenty of distractions it is good to start to get back involved. I've even started looking for a car for when I return to work properly.

The dodgeball tournament is also progressing nicely. We have held a trial game to figure out some of the rules. The Evening post turned up to take photos of us in fancy dress. The game was quicker than we anticipated, every one's competitive streak soon came out and dodgeballs were soon filling the air. One of the Salmon Dodgers got a nasty blow to the balls which floored him. It left everyone else in tears laughing... not very sympathetic but it was very funny. The were 2 articles published in the Western Daily Mail and in the Evening Post. Hopefully we will get a few more entries and donations as a result of this.

Lastly I have had my bone marrow sample taken now. While the process is quite painful it was over quickly and I await the results to give an initial all clear. Professor Marks has said he would be very surprised if anything was found. The test will look for leukaemia cells and test down to the millionth cell. Hopefully not finding any.

Wedding season is about to start, it seems I have timed my recovery very well. I have found myself with very few weekends free up until September. I will have to postpone any celebration party until October.. It may done to celebrate my return to the rugby pitch.

Cheers

Robbie

2008-05-15T07:06:00.000-07:00

Summer continues as does my wait for any progress. At least been off work has its benefits when the sun is out.

I think I overdid it on the exercise last week. My red blood cell counts were low. I did think I was producing red blood cells but obviously not enough to cope with my exercise routines. I feel hungover on Friday and have little energy. The low blood count combined with the cyclosporen drug and steroids makes me feel worse on Saturday and Sunday.

However this is not enough to stop me enjoying myself. I spend Saturday round a friends sitting in a hammock and Sunday on the downs. What better way to spend a weekend. Although I was very tempted by the BBQ's which were going on. I managed to resist and stick to my microwave meals.

Sunday night I develop a pain around my line (a implant in my chest to make injections easier) this is worrying as it signals that the is a infection. My CRP count has risen slightly confirming this. As a result after seeing the doctors on Monday the decision is taken to remove the line. Hopefully the infection has been caught before it spreads and causes further trouble. When I go in on Thursday it looks like I've got away with it, CRP count is back below 10 and the is no tenderness around the implant area. This shows that my immune system is working as well. Having no line will mean that I have more injections but I'm glad to be rid of it, fingers crossed I won't need another one.

Mondays results also show that my Red Blood cells had gone up. This again is repeated on Thursday. I was worried that something may have gone wrong with the transplant but this confirms all is OK and I was probably overdoing it with exercise.

In my wondering round the hospital I have bumped into two familiar faces. First of all I bumped into Uri. He had his transplant before me and was coming out of isolation as I was going in. In all honesty he looked like sh!t. He has graft vs host in his lungs. I almost feel guilty about seeing him when I am doing so well. My worse nightmare would be to get graft vs host in the lungs as it almost always leaves long term damage. Its also a reality check that problems can still occur. The second person was Merve. Merve had been through some tough times but his transplant seemed to have gone very well. He has not even lost his hair and has twice as much colour as when I last saw him.

Thanks to those who have popped in to keep me company this week, always welcome and appreciated. Don't forget to enter your team into the dodgeball competition (www.dodgeballbristol.co.uk), or if you can't take part feel free to make a donation to the just giving site (link to right of page).

Cheers

Robbie

Summers Here!

2008-05-08T11:15:00.000-07:00

While this week the has been little\no progress medically. Its been a routine week with drugs been adjusted slightly but no new news on how the bone marrow graft is doing.

The is a mythical 100 day mark is nearing (20 days now). This signals the end of the bone marrow isolation\period. The significance of this is that at the end of the 100 days the restrictions on me may be reduced. I might be able to eat properly instead of frozen foods, maybe be able to go out for a social drink. However this will be dependant on what drugs I am on at the time. Hence its a mythical 100 days and I will have to see what happens. That does not mean I'm not counting the days.

I have had some benefits of been off work this week and that is the chance to enjoy the sunshine. When out of hospital I have spent most of this week sitting on the downs enjoying watching the world go by. If only I could run and I'd be joining in the touch rugby. My physical rehabilitation is going well with strength slowly returning but my leg is still holding up progress.

Hope all well with everyone, and don't forget to get your dodgeball entries in. www.dodgeballbristol.co.uk

Robbie

Progress??

2008-04-30T11:38:00.000-07:00

I am after some answers this week, I have 2 clinic appointments the first with Prof Marks (head of bone marrow transplants) and the second with a consultant from Orthopedics to helpfully sort out leg.

From the first appointment I want to find out when I can head back to work. I already know that I've been progressing well from the blood test results (Although my counts are still half that of a normal person), they will not be able to tell me much more until tests are done next month... I'm someway of been declared free of Leukaemia.

My current situation is that I may feel ok, but I have a weakened immune system for 2 reasons. The first is that I am not generating enough white blood cells to fight infections, the second is that the immune system I have is effectively brand new. This means for example I can get chicken pox again and they can't immunise me for at least a year. Because of this I still can't go into crowded places and have to avoid anywhere with air conditioning. This puts me in a difficult situation of feeling able to do lots of things and been banned from doing most of them. So I'm generally stuck at home looking for things to do.

I spent the last week organising the Dodgeball tournament (www.dodgeballbristol.co.uk). The organisation has gone very well with Constellation (the company I work for) generously sponsoring the tournament, lots of interest in entering, and the website up and running. I'm looking forward to seeing the entries start coming in now.

As the majority of the work for dodgeball has been done, I'm back to looking for things to occupy me during the day. Prof Marks tells me I will not be able to go back to work for another 2 months (and this would be if everything went to plan). This is a bit of a blow. I was hoping rather optimistically that I could get back to normal towards the end of May\June. Other than that my drugs are adjusted and I'm not told anything I did not already know.

The second consultation I have with Orthopedics goes badly. I am told my appointment is at 10:15. I'm still waiting at 2. One of the worse places for me to be is a hospital waiting room and I'm stuck there for 4 1/2 hours. A problem I have with the treatment of my leg is that I have seen so many different people. I am promised by the consultant only he will see me in the future.. then told he is on holiday for 2 weeks. Previous meetings had indicated that I would have an operation to remove remaining dead tissue and then the wound would be sealed up. The consultant disagrees and would rather leave the wound to heal naturally, it has not healed naturally so far so why should it now? I believe the dead tissue is preventing the wound healing and an operation is what is needed. I really need the consultant and Prof Marks to get together. Instead the consultant sends Prof Marks a letter and sends me of to ultrasound to book an appointment. I'm rather fed up with both the problem with my leg and how it has been treated.

While it is clear that I won't be able to return to work until July I am still hopeful that I can do some work from home. After a meeting with work it is agreed I can do this provided doctors approve this. I'll be trying to get this tomorrow. If I can't work from home then I think I may go crazy looking for things to do.

After the meetings I try to get on with things as normal, however the adjustments to my drugs I feel some side effects. This continues over the weekend and when I report on Monday my drugs are adjusted again. The drug that was increased last week is dropped for a few days completely as it turns out I'm overdosing on it. Overall treatment seems to be in confusion, my drugs are up and down, leg is far from sorted. Its very frustrating both in terms of not been able to do what I want out of hospital and in terms of not feeling like I'm making progress in treatment.

Run Before You Can Walk?

2008-04-19T10:11:00.000-07:00

I have been recovering exceptionally well. I have purchased a spinning bike for my flat and some light weights. These are helping my muscles slowly recover. I have been using these and they have made me feel so much stronger and healthier. I started to feel normal again instead of the Leukaemia patient whose muscles have wasted away (also started to forget the 1cm deep hole in my leg still). With all this in mind I was set for a good weekend.

This started very well. Bristol Rugby had arranged for me to watch the game vs Sale in a box. I still cannot go into crowded areas so watching in the terraces is not a good idea. It was very generous of David Powell and I thank Geoff Moon for organising. As well as the rest of the Bristol staff\supporters who have been fantastic during my treatment (and still are been great). I really enjoyed the game despite the result. Thanks again. More rugby on Saturday, I went up to watch Old Bristolian 2's play. After these 2 games and more training on the bike I was left dreaming of getting back onto the pitch. My resolve to up the training and get back as soon as possible was stronger than ever.

I was pleasantly taken back on Sunday. One of my fellow OB's nicknamed "Killer" had arranged for a dedication at a Mass at Clifton Cathedral. I went along with my family not expecting many people to turn up. The turn out was good from current players to people who played for me 3 years ago when I was 2nd team captain. I was quite touched that they had gone out of their way to make it to the service. While I am not religious the service gave me the chance to reflect. I am feeling like I'm beating this disease.. I feel like once this is over I'll be stronger than ever and will be able to appreciate life to the full. The reward of beating this disease will be better than winning any lottery or passing any exam. In a strange way I'm lucky to be able to experience this (either that or too much time in isolation has sent me loopy).

Monday I'm back in hospital for most of the day. I am wondering round with a huge smile on my face feeling pretty invincible despite still been as weak as a kitten. Anyone who knows me well can probably guess what happened next. I was in treatment for most of the day, but when I was released I insisted on popping into a shop in Clifton. Iain waited for me in the car outside and I went and got what I needed and left. Iain had to park on the opposite side of the street in order to avoid blocking traffic. I came out of the shop and got half way across the road. A car was coming and I naturally tried to speed up... It was like I'd been lassoed, the legs stayed put but in slow motion my body lurched forward and started heading towards the payment. After the initial humiliation I scrabble to the side of the road realising my hands are covered in blood. Once at the car I cover up my hands with tissues. These are not deep cuts but it shows that despite my blood counts been good the clotting in my blood is still not normal. In the middle of that road all strength had been taken from me, I felt so vulnerable. I went from feeling invincible back to been weak as a kitten in a second. This was a big downer for me, not only did I now feel weak but stupid. These cuts are a real infection risk and I'd been so careful. Running before I can even walk properly was not the best idea. I was thinking of walking round the Run For Moore course in May (Race For Life for men), but now think that this might be to much, especially as I might be having an operation on my leg the week before.

After Monday's appointment I am not due in hospital until Thursday. I am still limited to where I can go so generally am hanging round the flat and going for daily walks and getting about when possible. My general day will consist of getting up and cycling for an hour then doing roughly an hours light weights. I have now thrown myself into organising a dodgeball competition which I then seem to spend most of the afternoon planning and putting together posters and tournament invites. So far everything has gone well and the tournament will be officially launched on Thursday. I am expecting 20 teams of 6 all in fancy dress should be great fun. Just need to figure out the rules.. If keen to enter drop me an email on rbb_stuart@yahoo.co.uk . I also have had to ban myself from internet shopping, I got a bit carried away buying novelty T-Shirts, DVDs and looking at new exercise equipment which I don't have anywhere to put. I am still however been strong and avoiding daytime TV, however the learning Spanish has been a bit of a disaster.. It seems to be the only thing that can make me go to sleep.

Next week I meet with Professor Marks. I am hoping this will give me an outline to how the treatment has gone, tests & treatment still required. When can I start work again, when will I have an operation on my leg and so on. This happens on Wednesday fingers crossed I get the answers I want.

Discharge (2nd April to 10th April)

2008-04-11T02:00:00.000-07:00

No I have not developed another problem. I have been unexpectedly released. If you have read this blog for awhile then you will know that when you are told by a doctor that you are to be released you only believe it when it happens. It started after I updated by blog Wednesday, with a possible release date of the next week... all very open ended and anything can change in the blink of an eye. So I don't pay much attention. On Thursday they tell me I'll be leaving Monday. Again I don't really believe it. Friday they tell me I'm off tomorrow!!! I still don't quite believe it.

For a number of reasons I don't sleep (steroids and I'm to big for the bed). So I pack ready to go, collect paper work from a bored nurse so would be ready to go first thing. Trouble was no one told the doctor on duty. After reviewing my now extensive file he was told by a nurse he stood no chance of keeping me in..

Even better I was told I would be allowed to go watch OB's play in the afternoon. I am allowed to see visitors but need to keep it limited. I am not allowed in shopping centres \ any air conditioned environments. My diet is still restricted, mainly to frozen food as it is least likely to carry infection. Without a freezer in my flat I'm completely dependant on my parents to supply me with food and juice (I'm not allowed tap water).

I am still as weak as a kitten, I can't run (even if it was to get out of the way of a car) legs have no strength and the arms and everything else is pretty similar. My mind is saying get out and exercise but the body is yet to follow. I ordered a bike for the flat and it arrived today. Tomorrow it gets taken for a test drive... Its a shame the tour de France does not start soon so I could cycle along with them. Before the bike arrived I have been going for walks of around 3/4k's, not at any great pace but its a start. Also I have got hold of some light weights to get the upper body going.

As I mentioned before I am having a lot of trouble sleeping. This has given arise to some strange behaviour. I have started making use of this time rather than get frustrated. At 5:40 Monday morning I could be found doing a gym routine in my kitchen. Tuesday morning I was found sorting through travelling photos. The trouble is I don't get tired, it does not seem to effect me during the day (I don't sleep in the afternoons or catch up at any point). Sleep is for wimps...

I'd like to thank Rob Morton (Killer) from OB's for arranging Mass for me. I was touched to see how many people turned up and the support been offered. While I'm not religious in anyway it was a useful time to reflect on what I've been through and what I have to look forward to. 3 weeks ago I could not see where\when I was going to get out of hospital now I feel that I can see the way out!! As you can imagine this brings a very big smile to my face. I know the may be hurdles to clear yet but I feel pretty good, while blood counts are not normal they hopefully will continue to improve.

Anyway I've just seen the Lions tour itinerary has been released. Time to start planning holidays I think.

Thanks for your support... I doubt I could have started to recover\keep spirits high without it.

Robbie

Results Are In! (26th March to 2nd April)

2008-04-02T03:37:00.000-07:00

What a difference a week can make. Test results are showing I have no signs of infection. I still have graft vs host disease but this in the long run is a good thing. I have it in my skin which causes itching all over and nettle like stinging marks. To get over this I am covering myself with various creams.. I look like I'm about to swim the channel when I'm done. I could have got graft vs host disease in a lot more serious places, it could have effected lungs or my heart and left me with some long term damage. So I will take itching skin for a few weeks and it reduces the chance of the leukaemia coming back by 2.5 times!!

Other test results have shown that the graft has started to produce more of my own cells. Platelets are been produced for the first time, these are usually the last to be produced. I'm still not producing the normal amount of cells but my body is slowly returning to normal. The doctors as a result have moved me from the full isolation ward and I am allowed out for the afternoons. I'm still under strict rules on who I can see and where I can go. The will still be 50ish days where I'm not allowed in crowded areas and have a restricted diet, after this if all goes well then things will be relaxed after this.

These are initial tests and I will still need confirmations from further blood tests and bone marrow tests. The is a long way to go yet and lots of hurdles that still need to be cleared. So while this is great news it is a still early days and some way of been clear of the disease.

I'm starting to try and do more exercise and will be ordering a gym bike for my flat as well some light weights, this way I can build up my strength at my own pace. This is been alongside increasing my diet. I Olympic bodybuilder would be proud of how many calories I'm starting to consume, yesterday I calculated I consumed around 3000-4000 calories. As long as I match this with exercise then hopefully I will be back to fighting weight soon enough.

All have this has left me very upbeat, but the good news does not end there! Congratulations to both Alex & Amy and Wibbles & Emma in expecting their first child later this year. Although its quite scary imagining a little Millard and Higgs running around.

Lastly Sarah (Dirty) is joining Iain in cycling to Paris, her company HBOS has agreed to double any money she raises so please give generously. (Link added to right of page.. please note the nice cow outfit).

When I am able I'll let you know when I'm able to see more visitors.

Robbie

Way Out?? (19th March to 25th March)

2008-03-25T09:28:00.000-07:00

When I wrote the update last week the was a hope that I may get released early, or at least get allowed some time out. While these hopes have not disappeared my chances are looking a little slim at the moment. Over the weekend my temperatures have fluctuated between 36.2 and 38.8, blood pressures have been extremely high then an hour later dangerously low. During all of this I generally feel fine apart from getting extremely cold and shivering almost constantly. The doctors are very confused to what is causing it all. As a precaution they have removed my drugs line as these are frequently the source of infection. It had no effect. The latest development is a rash covering the majority of my body. This could be graft vs host disease (which in a way would be a good sign) or it could be a reaction to some of the drugs that they have given me. At present I am in no-mans land waiting for test results to come back. Until then I'm stuck waiting.. is it a quick fix changing some of my drugs or something more serious?

It is day 35 of isolation now. I am starting to really miss my own flat. However I need to wake up my legs again, at present I wonder round my room for 5 minutes then have to sit down. I am some way of been able to fend for myself at home. I am doing daily exercises to build up the muscles slowly. I don't want to have to depend on others to look after me so it is important I start to get my strength back as soon as possible. The sooner my strength returns the quicker I can get back to relative normality... I must be one of the few people who really wants to get back to work. It will be awhile before I can get back to rugby I need to put on another 20k again and make sure its in the right places. It will happen .. I just have to be patient.

Thanks to those who have got in touch. I am on skype now if anyone wants to see what I look like with no hair and I could give you the tour of my spacious isolation room. Look me up by my email.

Cheers

Robbie

Turning Corners

2008-03-19T03:45:00.000-07:00

First of all apologies for not updating the blog sooner. The treatment really took it out of me and I have had little energy to move out of bed, that combined with high dosages of morphine has made life a little difficult. The side effects are harsh to say the least I will fill in gap in the blog at some point but wanted to let everyone know I was OK first.

However a corner seems to have been turned. Towards the end of last week I stopped the morphine and began to feel a little more human. Initial signs are that the transplant has taken and I am producing some of my own blood. The is a long way to go and I am still extremely weak and vulnerable to infections. Isolation is a nightmare.. I have been in the same room for a month now. Keeping sane is quite difficult..

Well done to all those who ran the Bristol half marathon on the weekend & thank you to all those who sponsored Ben & Dean. Between them over £2,000 was raised for leukaemia research. Fantastic result!!

Iain has also taken up the challenge and is going to cycle from Bristol to Paris. Please give generously ( www.justgiving.com/iainstuart ).

Thank you all for your support and hopefully the updates on the blog shall return to normal again now.

Last Chemo 12th to 17th Feb

2008-02-17T03:22:00.000-08:00

I have been admitted initially to the BMT unit on the same terms as Ward 62 If I am up to it then I will be allowed out. This presents a bit of a run around for my parents. As I can potentially finish the morning treatments by 10:15, then have the entire day free until the 3:00 treatment where timings are a little more unpredictable. I can be finished by 4:00 if no delays have built up, however it seems usual for one of the machines to breakdown or the sheer volume of users just causes everything to come to a halt. Also they won’t work Sundays but will work Saturdays? I get the Sunday off all treatment as a result.

Radiotherapy starts on schedule on Saturday. Once you are lead into the radiotherapy room and stripped off and attached to sensors you are made to lie in position by the doctors. Once again all my trust is placed with the doctors who made the dosage calculations.

Mondays afternoon session the is a long delay. The is a little girl. She lightens the atmosphere playing in the waiting area. However when she goes into treatment you can hear the screaming even through the extra thick walls.

The Treatment goes smoothly enough. However the were a few unforeseen surprises. You can feel the radiowaves scanning up and down making each hair stand on end. This tingling continues up the next and across the eyes. The first time I decide to keep my eyes open the first time. I feel the tingling sensation buy shut my eyes the second time. It lights up my eyelids like a torch at close range. In my 3rd session these tingling feelings develop into involuntary twitches.

One last treatment before the transplant that is Chemotherapy. Possibly my last ever session Of Chemo, just as before it will treat the whole of my body but this will be far more intense, designed to kill off any remaining stem cells. Side effects are almost instant. I’d able to get out the hospital up until now. I was tired, appetite gone, no energy in my limbs.. I was now stuck in the BMT unit ..

COUNTDOWN (4th - 11th Feb)

2008-02-11T06:52:00.000-08:00

I am finally due to leave Ward 62 moving on to the bone marrow transplant unit (BMT). I have been a inpatient in Ward 62 since November. I have been through alot on this ward and all the staff have been fantastic in looking after me. Some of their jobs I could never do, yet you never hear them complain they just get on with it. On top of this they manage to keep a cheerful atmosphere that makes life so much easier as a patient. As I leave the ward each nurse wishes me good luck for the transplant.

At the moment my blood counts are better than when I was admitted. I have managed to put on a small amount of weight so am as ready as I'll ever be for the next stage of treatment. On this note I book into the BMT unit for the first time on Friday afternoon. I am due to be given some very expensive drugs. I am assigned a small corner room that will be mine for the next week. The rooms are better equipped than ward 62's with DVD players and radios. I settle in and wait around for doctors to see me then for the drugs to be administered. I end up been stuck in hospital for the majority of the Friday and hope that this does not happen over the weekend otherwise I'll be watching the 6nations in hospital.

I was home by lunchtime both Saturday and Sunday, as the nurses knew I was wanting to watch the rugby they did not hang about. Thats all I'm going to say about the rugby as Scotland's campaign falls apart.

It all kicks off tomorrow. Radiotherapy starts at 9:00 followed up at 3:00. While I want to move on with the treatment I am starting to get a little nervous. However I accidentally bump into a old friend in the BMT unit. They had gone through the transplant and were recovering. Thats where I want to be in 5 weeks time. Just have to remember the end goal is in sight, but like Everest the last push may be the hardest part. Wish me luck for the next week.

Lastly I have added some links on the right of the page. These are for friends who have decided to raise money for various Leukaemia charitys. Thank you to all of you.

Ian & Matt: Cycling the Tour De France
Dean: Running Bath Half Marathon as Snow White
Ben & Liz: Running Bath Half Marathon (Ben aiming for 1hr 45 Liz aiming for sub 2hr)

Microwave 28th Jan to 3rd Feb

2008-02-03T09:45:00.000-08:00

All of the nurses and most of my visitors have been saying how well I look. Also the doctors are going to let me go home on Thursday and before this they are going to let me head home for the afternoons... I want as much time out of hospital before I am put into isolation.

To let me go home I need to be taken off some of the antibiotics. My blood test results and observation checks all have indicated the is no infection so my last dose is due Wednesday. I will still remain on some antibiotics but I'm going to be taught how to self administrate these. On Monday I start lessons on how to do this. I have to learn how to prepare the drugs as well as the routine to inject into my line. The injecting into my line I have seen many times before and am fairly confident I can do. However the preparation of drugs has always been done out of sight and if I mix things wrong then I will end up doing myself alot of harm.

I need to do these injections 3 times a day. I practice as much as possible with the nurses help by Wednesday I'm given the all clear to head home and inject myself. The physio needs to give me the all clear as well. She visits on Wednesday, the concern is can I get up & down stairs.. I'm taken to a stairwell and swiftly climbed up and descended down without help from the physio. I am still hobbling and legs are weak but its not going to stop me going home.

I get to Thursday and am all ready to go. I am woken early and am told I'm going for a Radiotherapy session. Its the first I know about it. I imagine its going to be a claustrophobic container which I have to remain still in for a few hours, for all I know it could be like a microwave with me on a revolving plate in the middle.

I am measured and weighed then I am fitted with a very stylish tight string vest. Padding is fitted around my neck and put between my legs. This is to ensure a uniform dose of radiation throughout my body. Senses are placed across my body and the bed I am in is lined up against a wall. The machine that treats me is around 5 metres away on the opposite side of the room. A green light is projected from the machine, it forms a green light around the bed. Nurses perform a bit of a chuckle brother routine of "to me.. to you" getting me in the right position. Everyone then leaves the room and the machine buzzes to life, the initial noise dies down and the is music in the background. I have to lie completely still until the nurses return. This is only a few minutes however this is just a test session next week I will have to stay still for 2 hours at a time when the sessions start properly in the build up to transplant. This will be twice a day for 4 days.

Despite been allowed home I still have to go into hospital. Friday is very hectic. I have a ultrasound and lung function test in the morning, followed by a visit to the bone marrow transplant unit. The bone marrow transplant unit is fairly new, rooms are about the same size as ward 62's but have a more ikea atmosphere than hospital. I get to ask a few questions and I get a nice surprise. The 100 days which I believed I was in isolation was wrong.. It is 5-6 weeks isolation!!

Once released then I am free for the weekend and the 6Nations. I am confident in Scotland, this might be the year they could win the 6Nations. Ireland vs Italy was boring but in contrast England vs Wales was one of the most bizarre games I have ever seen. England handed Wales victory on a plate. This lost me my bet on the weekends results. My bet also counted on Scotland beating France. Scotland disappointed and France took advantage. None of my bets in the world cup came off and the first round of 6nations follows this pattern.

I am now on countdown until treatment starts. I have 1 week left and hopefully I will spend most of it at home. I just want to get on with the treatment now, although its a little strange looking forward to radiotherapy and chemotherapy. Thanks to all those who visited this week I hope to see more of you before isolation.

Cheers

Robbie

Birthday Take 2: 24th Jan to 27th Jan

2008-01-27T08:56:00.000-08:00

My birthday started in earnest around 7:30 the morning staff came into my room and sang happy birthday to me (remember I'm on quite a lot of Morphine still at this point). This is followed up half an hour later by the day nurses coming in and singing happy birthday. This time they bring me a cake.... Perhaps like the man who was attacked my tickling ferrets I would have nurses and cake all day. If so I better request more Morphine.

Sadly the was no more nurses coming to sing to me and bring me cake. I was cut a generous portion and the rest was passed round the other patients and the the should have been enough for the nurses to have, (unfortunately a familiar story to many offices.. the cleaners ran away with it). In a timely fashion my parents rang to ask if I needed anything, another cake was needed to keep the nurses happy. This arrived for lunch time (a Caterpillar cake), and was split around again, once again I was given a large portion. Well 2 cakes in 1 day.. I am trying to put on weight. I was later brought a pack of 6 mini Caterpillar cakes which I had to try as well.

The cards were arriving a soon took up the window sill and the notice board. Presents then started to arrive. Doctors also seemed to think operation had gone well. Also I may be able to get out on day release next week before isolation. Getting out of hospital would be the best present I could have right now. Have a good day with plenty of well wishes. Manage to eat a silly amount of food. This is confirmed early Thursday when weight is checked and I've managed to put on a whole kg, not bad seen as I've been on nil by mouth for 3 days of the week. More good news follows my CRP count dropped straight after the operation a good sign that the infection is on the way out. Friday I get to see what they have done to my leg. The dressings come off, I have had 2 tubes draining fluid from my leg, I thought that these would just relate sorting out the remnants of the fluids left behind my infection. These however were huge tubes. Once they started moving them (they start just below my hip) I can feel them grip muscle just above my knee. The vacuum pump is turned of and the nurse starts to slowly pull the tube out. This is agony. It feels like the vacuum is still on.. Can feel it grating on the sides as well this is not good. They pull this one out, each time I winch they stop. They finish eventually but decided to do the 2nd one with some more painkiller. They get the Morphine for me. Iain turns up, I said to him that I might need a destraction for the next 20 minutes. So we play connect 4. We get through a few games before the nurses come back. This time I tell them to do it quickly. Thats much better not much of a problem this time.

I have been asking nurses and doctors for the last few days about my transplant when I'm due the pre-op tests when I'm due to go into isolation. Answers on CRP counts are slow to come back, in general no one seems to know whats going on. I'm getting quite frustrated.

Saturday brings the best news of the week, I'm early on the doctors round and I vent some of my frustration on the doctors. This is half a sign of my frustration of been stuck in the same room for so long. Later in the morning I accidentally flash one of the more senior nurses. One of these actions caused the nurses to decide I was well enough to deserve some time out. It started off with an offer of been home Sunday for a Sunday Lunch but soon was upgraded to been home on Saturday!!! I ended up watching OB's play rugby... Fresh Air never tasted so good, shame OB's played so badly (obviously desperately missing myself). Get home and get home cooked food! Also have the unforeseen benefit of celebrating Christmas which had been postponed. More presents and get to open more cards. How much better can a day get. Start of pissed off with the world end up having Christmas day, what better way to cheer up.

Sunday trys to beat it with leaving hospital and heading home and having a brilliant Sunday Lunch. I clear through emails and will reply individually but news that hear my friend Anna from Milk Link has had an accident with Fireworks over Christmas puts a downer on the day. I wish her all the best in recovery and may bump into you in the EMT when I have a check up some time in next week or so.

Thank you for your support keep it coming before I go into isolation on the 11th February ready for transplant on the 19th, followed by 100 days isolation. I hope they keep letting me out over next week or so should be able to catch up on emails.

Cheers

Robbie

21st to 24th Happy Birthday

2008-01-24T12:37:00.000-08:00

Monday remained quiet, watching DVD’s, reading etc. I received some bad news from Prof Marks. The transplant may be delayed 2 weeks, this was later reduced to 1 week. This has the advantage of I can see more of my friends but in truth it is delaying the inevitable. I just want to get on with it. The quicker it starts the quicker I’m potentially cured. I’ve always been told I’m very patient. I may be losing that quality. My CRP counts go up.. the is still an infection. Where? I have developed a hard lump by the bandage on my leg. Prof Marks decides scans are required asap. Visitors come on in leaving me absolutely knackered, I knew about some but not all of them. I was left tired out and once they had left I tried to sleep straight away only for constant drip or change of drugs to wake me. I was actually of my drugs quite early. However someone else on the ward had been given something which sounded brilliant. I was woken by a man in hysteric laughter. This continued for around 10 min. At first it was quite funny but then became quite annoying as it kept me awake. A nurse heading over and I could clearly hear her ask “Mr ???? what is wrong?” to which the reply was “get these ferrets off me they are tickling me!!” The nurse must have caught all the ferrets as he stopped laughing (for awhile).

I only found out today that been in a room in isolation really does isolate you from everything outside the room. I had still considered myself part of the ward. The nurses gossip and you can hear enough to know if it’s busy or quiet. I had distracted myself with the 2nd half of Godfather 2 but on a general observation check up making small talk to the nurse turned out I’d been missing a massive drama on the ward. The entire ward had been quarantined. A case of the Nora virus and C-Deficial (forgive spelling) had been found in the morning. This meant no visitors and more importantly I was not allowed to go for any scans or tests as no one was allowed to leave. Tracing any infection and acting on it would be impossible without leaving the ward.. I’ve been in quarantine for the last month so I can’t have it! I just want a scan done on my leg to see if its infected? Eventually I’m quickly prepared and rushed out of my room for a CT scan. I assume this must have been the infection controls tea break. The CT scan is extremely useful it shows their is something there but the doctors don’t know what it is? They decide to operate, I assume this would be another cut open and take everything out operation. This would mean the scar would be as big as my thigh… that would make a Hippo slightly more believable as it would have had to have been a midget hippo before, I must also learn how to explain this in Spanish.

This carries on to Wednesday and I’m told I’ll be in surgery tonight. Nill by mouth again (going to make up for it with cake tomorrow). I return to ward 62 around 11:30pm I still have antibiotics to go in and after previous experience do not try and eat. The leg is agony I request my painkillers quickly. They arrive around 20 min later I’m not impressed at all. It feels like someone’s taken a hatchet to my leg for all I know that’s what they have done. Its about an hour after I returned, I’m starving 1 hour should be long enough to wait. I attempt some toast. I predictably throw up. I’ve thrown up my painkillers… they won’t reissue them!!!! As I know my parents read this I can’t repeat what my words to the nurse was after I’d thrown up. I had to revert to taking the morphine based painkillers that I’d lost a weekend on around Christmas. Again I had to ask them to up the level for them to affect the pain. I would wake up every hour and half feeling like I’d been stabbed again and the knife was still in my leg.. they would then dose me again and I’d sleep. This carried on from 1:00 am until 7:00am (I think). I started my 28th year on this planet with 4 heavy doses of Morphine. Happy Birthday!!!

12th to the 20th January. Shock & Awe

2008-01-20T12:09:00.000-08:00

After an unremarkable weekend (a calm before the storm) I am due a meeting with Prof Marks to discuss the next stage of treatment. I have not even had the bone marrow checked yet. Something has changed, treatment should depend on how the bone marrow test goes? On top of this I am due 3 operations this week, 2 on my leg and 1 to put a new line in. This means nill by mouth for 3 days, I’m supposed to be putting on weight!!

The first operation is to clear out the dead tissue caused by the infection and to stitch the wound up. I am just told first thing in the morning I’m nill by mouth, operation hopefully will take place around lunch time. Lunch passes, Dinner passes and I go into operation around 10:00pm starving. The operation takes about an hour and an half. I wake up in the post op’s room a familiar place already. It takes until 12:30am for a porter to arrive to wheel back my bed to ward 62, he then proceeds to argue for another half hour that no one should be moved after 12? After some persuasion I’m taken back to ward 62. Hungry I eat an entire pack of grapes. Trouble is stomach had shrunk food goes in but soon comes back. I need a few hours before I can eat after an operation. At this time though I just need sleep. Operation went ok think they got all the dead tissue.

Tuesday I’m due a line in the neck, this is a minor treatment only requiring local atheistic. As a result it should not require nill by mouth. I order a large breakfast and start looking forward to it. My stomach is rumbling as a nurse comes in and tells me I’m nill by mouth. Nooooo. I ask when my operation will be. No one knows when it is scheduled. Lunch passes, dinner passes only sips of water allowed. The treatment again finishes around 11pm once again this time I have the knowledge I have another operation tomorrow feel bloated so don’t even attempt any food. 3 days without food. Maybe I should sell some of these tricks to David Blane. New line is inserted no real problems.

Wednesday operation is going ahead, They allow me a cereal at 6:00am but this means operation is planned for 10:30pm, I now know all the staffs names in the atheistic and post op, they don’t expect to see you again your meant to be in once get operated on then go recover. Wednesdays operation goes without any hassle. Stitches are put in leg and I am left to ponder my excuse for the large scar across my leg. Its quite large so I could get away with Shark Bite but that’s a bit to boring I’ve decided upon been attacked by some Hungry Hippo’s.

Operations are now routine. I need out of this hospital I’m starting to know more people than most of the staff. Its only the Eye hospital I’m yet to visit (appointment booked already).

As mentioned earlier I was due a meeting with Prof Marks. This happens on Tuesday evening. It has to be said Prof Marks is extremely blunt and frank about the processes that he is recommending I undergo and the risks associated with them. I have not even gone through the bone marrow tests. It was always said that we would need these before deciding the best treatment for me? What had changed. Well it turns out I’m a freak. Usually people have 1 variant of Leukaemia occasionally people have 2. Having more is extremely rare and effects future treatments. I have 5 different variants, that’s just greedy… The effect on future treatment is that further Chemo is difficult as it would need to treat 5 different types. The result is that I am now I will have to have a transplant the option of continuous Chemo is not viable (21%? Chance of survival). The chances of it coming back long term is also greater for a young person like myself I don’t like the idea of having the disease as a shadow over my head.

So the best option for me is a transplant. The chance if survival (long term) is 45%. Not great but better than 21%. This is assuming that I manage to sort the problem with the leg out before the transplant. Going into the process I cannot afford to have any infection. Any infection could prove fatal as what happened with my leg proved. They will be taking away my immune system very quickly leaving me extremely exposed to any infections that I already have or anything brought in by a 3rd party. The Chemo will be stronger than any of the Chemo I have had before. It is killing of all stem cells in my system. Phase 1 & 2 of Chemo did not manage to kill all of the stem cells and were 4 weeks each. This stage is 10 days long and must kill everything. I will lose hair quickly, my mouth will swell to the point where I can’t eat. As well as all other Chemo side effects. Once this is done the transplant will take place this is known as day 0.

After day zero a new set of challenges need to be faced they want me to get 2 types of infection graft vs leukaemia & graft vs host. Both of these can be fatal or can cause severe side effects (liver failure, kidney disease, blindness etc). 30% die at some point in this transplant… The reason they want you to get these now is that they can control and help your bodys response. If you don’t get them at this stage then when you get them at a later date the leukaemia will come back and you enter remission, for those in remission the is little chance of survival, you need to beat this disease 1st time.
25% who make it through go into remission and then pass away. Pretty depressing conversation. Anyway I’ve just got to concentrate on the 1st part I have a 70% chance of survival and with a bit of determination and will I can get through this stage. Then view future challenges of remission if and when they occur.

I will be moved to the bone marrow transplant ward. They are far more strict on infections and as a result restrict visitors to those on a named list. I will have to name the 4 people who will be allowed to visit in advance, no one else will be allowed. Lastly I will be stuck in this unit for 100 days after the transplant and 10 days prior!! This is due to start the first week of February.

I was told this with my parents they were quite shocked, I talked about how could see the end of it, rehabilitation. My Mum left first, just before my Dad followed shortly after but not before reminding me that I should make a will, I had already considered this and just needed to make a call to sort out. Not many people were aware that I was still in hospital, as I’d been slow on updating the blog (partly because of difficulties of accessing the internet) and had not advertising it that readily. I needed to get some support from as many friends as possible before going into isolation. I sent out a text message saying to people to come and visit as soon as possible before I went into isolation.

The message I sent out had the desired result I had a chain of visitors through the doors. This was a great relief and a much needed distraction after hearing the news often just talking through the decision and the dangers. It allows me to accept the facts, each time I tell someone the risks I accept them a little more. Or each time someone just comes in a tells me about rugby, their Christmas or New Year or Dean and his terrible jokes it all was needed and did a job. For the rest of the week I was entertained by more visitors some bringing gifts in advance of my birthday next Thursday the best of these were a collection of photos from Chaz & Lexy, the reason why I appreciated it so much was that every photo in the book was of something I am looking forward to doing when I’m out of hospital, it had Brizzley, skiing, fancy dress, super Sundays in Racks, NHD add to this pictures of cheerleaders from Dubai 7’s I now have a ultimate book to keep me going. With an air rifle I’d also have enough DVD’s to start a pigeon pull business.

Light At End Of Tunnel

2008-01-11T14:36:00.000-08:00

I see the wound this week. I am visited by plastic surgeons, dressing specialists and general surgeons as well as my consultant. All have a good prod.. the plastic surgeon actually puts his finger inside the wound. The is an argument about what treatment I should. My consultant wants an operation, plastic surgeon wants a vacuum dressing, the dressing specialist wants a honey dressing. The dressing specialist wins as she is the only one with access to the vacuum dressing and the plastic surgeon refuses to operate. I look at the wound every day now when they change the dressing. The honey does seem to be having a positive effect.

Other news is that I’m almost certain to be having a transplant. Their is an donor lined up for 3-4 weeks. My leg needs to be ready by then. Once the transplant is done I could be beginning to get back to normal within 2/3 weeks. Could this be light at the end of the tunnel. However have not heard all the risks and details yet..

STACK IT

2008-01-06T14:35:00.000-08:00

I’m improving; my leg is still more mobile. I have still not seen under the dressing. I start wondering short distances round my room with a hobble and very unstable but I’m just glad to be out of bed and moving by my own steam. With this confidence I get up in the middle of the night to make it to the toilet, normally I would have to call for a nurses help but I don’t see the need. Half way in the 3m journey my legs buckle I pull it together against a chair, then as I attempt to go again everything goes. My knee folds over, ankle twists and goes over on itself and my body weight falls on top. I scream out and realise I’m exactly half way in-between the 2 nurses call buttons. I can’t lift myself with my legs so I am dragging my body across the room towards a buzzer. The nurses heard my fall and got to me before I made it to the buzzer.
The next day my entire left leg has gone red or black. The thigh is covered by a rash. The knee is red\black from been twisted, the shin is black from bleeding internally and the ankle is swollen. I have injured the ankle plenty of times before and am confident that it will heal quickly the knee I am more worried about. Main problem this entire incident causes is that if I want to go home anytime soon the doctors will insist on someone been there at all times this is not practical. I’m annoyed with myself.

Closing In

2007-12-20T14:33:00.000-08:00

20th December: Closing In

The vomiting and lack of appetite have got worse. I can’t keep any food or water down. I’m heading to hospital in the morning so will try get this dealt with there. I feel like rubbish and am dropped at the doors. I’m meant to be in for a routine blood test before the last Chemo session tomorrow however I soon realise as I step out of the lift I’m in for a lot more. The room spins and I make it to reception stopped by my nutritionist on route I have to find a seat and take in nothing she says to me. I get up and settle in the day area hoping all would settle once I was sat down. One of the nurses comes to see me and starts getting me ready for taking blood. The room closes in my head is light but I can’t hold it up. I get carried \ ushered to a bed and gradually come round. Every doctor available sees me. They all ask if the is anything else unusual, as far as I’m concerned it is all to do with lack of food and water. The only thing I can find for the doctors is a small spot on my left leg; it looks like an insect bite or in growing hair, nothing to be worried about. I am booked into isolation.

The next day I take a look at my leg. It know looks like I have had a football kicked at me as hard as possible and I have a huge red patch round what is now a black scab. What the hell is this?? I’m put on every antibiotic they can get hold of. I’m on a set of 3 drips for 24 hours a day. 1 drip is annoying but 3 is an never-ending beeping. I am sent for various scans to determine the depth and severity of the infection.

Day 3; The rash and black spot have grown again and covers most my thigh. A surgical consultant visits me. He scares the bejesus of me, he starts of by saying “if this infection reaches the muscle it would be a MRSA”. Where had it reached… Luckily not the muscle yet. If it does reach the muscle with the rate it is spreading they may have to consider removing the leg to stop the spread.. Anyway that’s not worth worrying about, as it is the antibiotics have started to put the infection into retreat. The consultant comes back and takes a sample from my leg, after this it is put into a dressing and I don’t see the wound again for a few days. All I know is after he is finished the pain is excruciating. I’m put on a heavy dose of morphine, after this I have no idea where I am and spend most of time talking rubbish.

Christmas Eve to New Year: Happy ?
Still talking rubbish, think I’m in a ski resort in Austria, then think I’m on a train? Christmas day while slightly more conscious of my surroundings still out of it. Christmas postponed. Boxing day to New Year I start to recover but slowly. I spend most of the days sleeping still under heavy painkillers. It goes down as the quietest Christmas and New Year ever, I’m not sure I ever realised it was even New Year. More to celebrate after I’m out

Story so far…

2007-12-19T14:27:00.000-08:00

On the 6th October 2007 Robbie was diagnosed with Leukaemia. He resolved to fight this disease and come out of it for the better. Besides I’m young fit, healthy if anyone can beat this I can.

The initial few weeks bring a shock to the system, both in terms of what I’m in for drugs, tubes; routines, hospital food and how different people deal with disease. The first round of Chemo does not cause much of an issue. I eventually lose my hair, but manage to keep watching OB’s throughout most of the treatment. If this is all I have to put up with its all ok I can handle this.
I did have one problem during the 1st phase that carried through to phase 2 of the treatment… my wisdom tooth was swelling up, this ended up causing far more problems than you would expect. After an operation to sort out the second round of Chemo started while I still had an infection. The result was cold sweats, temperatures around 40 c and very rough. While the infections gradually reduced the Chemo was still hard, vomiting at least 3 times a day and tried every anti-sickness drug available with no effect. Eventually things calm down enough for the doctors to let me home on the 11th December. Last Chemo is on the 21st December, then I’ll be free for Christmas at home.

What week\ What Day??

2007-12-12T08:00:00.000-08:00

The is no point in detailing what has gone on in the last 2 weeks. Suffice to say its been difficult. The chemotherapy is taking its toll. Its now routine to be ill several times a day, appetite has gone completely partly in fear of the food been brought up again. This is not helped by the standard of hospital food. I am better of eating little and often. Each day would bring different challengers, different drugs, different nurses, different patients on the ward with different habits, some nights you would sleep a little, some nights you would barely sleep at all.

Doctors change over during these 2 weeks. All the junior doctors who have treated me since diagnoses are moving on. In practice it is the junior doctors who deal with you most day to day the consultants make decisions on your treatment and the junior doctors carry it out. I knew all of these very well, it will take the new doctors quite awhile to build up the trust that these doctors had earned.

The sickness I can deal with, however the tiredness is the problem. I can't remember when the last good nights sleep I've had. You can't catch up during the day. You nerve feel right, this is not helped by blood counts dropping with Chemo and the lack of protein I'm eating.

While I've not been given the all clear from all infections I was released home on Tuesday 11th December. I'm still incredibly tired (hence a fairly short entry for 2 weeks). Most my time is spent sleeping and visitors are limited. I can just about do something for half an hour then need to lie down again.

I'm so happy to be at home, my chances of getting rest are a lot higher. Also at home I would stand less chance if picking up infection. I'm due back for blood transfusion, chemo and lumber punture. The blood may make me feel more awake. Until then I need to try get some decent food down.

Also thank you to Bristol Rugby and Gloucester Rugby for providing signed shirts (inc a Eng shirt). Which are to be auctioned by CLIC Sargent on

http://stores.ebay.co.uk/CLIC-Sargent-Shop

Please take a look and consider as Christmas presents for friends, family or yourself. More money raised the better.

Thanks for your support.

Robbie

New Chemo

2007-11-27T05:27:00.000-08:00

Friday brings a surprise first thing, they are moving Chemo forward to today, this is good news as it gives the Leakeamia little chance to recover. The type I have requires you to stay on top of it otherwise it will be back stronger than before. This is despite the fact the infections are still ongoing, and the Chemo will destroy any remainder of my immune system. This also has a knock on effect that I won't be coming in at Christmas as I should finish a few days before.

As before getting the Chemo therpy was not a problem, at most I'm hooked up for an hour then done. However this round of treatment (a different type of treatment than before) knocks me sideways. Give it 1 hour and I'm out for the count, head pounds. This is not helped my the family with an 11month old next door screaming. I manage to fall asleep but am woken later by a nurse, before she has a chance to set up I have to leg it to the toilet and throw up my entire dinner. I can think of so many other places I'd rather be but I'm stuck hugging a communal hospital toilet for half an hour. 1 hour after this I go into a fever. I had hoped that the release home was a sign I would be out soon.. Hopes are dashed. However I get a visit from both Gareth (OB's) and Alex Brown and Ben Strunham, the later bring copies of the Stade Francais game. Ben and Alex leave quite quickly and I eventually have to ask Gareth to leave because I'm to tired.

Sat morning I still feel rough, Its only the nurses making me get up to be weighed that cause me to get up. I'm now 67k.. I've lost 25% of my body weight. They had not given me any anti-sickness on the first round, will be taking it this time. Slight destraction of Wales vs SA playing rugby in afternoon, all quite predicatable in the end. Chemo is taking toll after game I'm asleep again by the final whistle.

Iain brought in a copy of the evening post, the was a article on myself and the old bristolians going to Dubai. Has photo Gav took in the hospital last week. Also I have been told its on the bristol rugby website (http://www.bristolrugby.co.uk/25_4833.php) and scrum.com (http://www.scrum.com/39_49342.php). This is great coverage for CLIC-Sargent. And also a massive thank you to those at Bristol & Gloucester for getting signed shirts for us. The will be a charity auction on the CLIC website for you to do some christmas shopping.

www.stores.ebay.co.uk/CLIC-Sargent-shop

Promotion over.. but please do have a look.

The Chemo continues until Monday, I had been hoping that I could be out of here on Wednesday, hopes dashed again. Spend most of Monday, Tuesday not eating but been ill and sleeping. Its times like this you really don't want to see anyone but also need someone just to come in and give you a quick perk up and leave.

2007-11-25T09:35:00.000-08:00

Back To A Familiarity (Wed - Thurs) Despite phone been out of battery Iain still manages to find me again. He must have been getting friendly with hotel switchboard staff tracking me in the last few days. I’m back in the same bed, this is quite a bonus. I must have been in favour with the nurses. It’s the lazy boy bed of the ward. If your in bed and visitrs arrive at the press of a button your sat up. The other beds you have to mess around with metal slates, a bit like folding deckchairs.. I also have a DVD player. Iain has brought me some connection with the outside world as I borrow his phone with my sim card, unfortunately I can’t access my numbers so am getting messages but not knowing who or when they are from. I have some fresh clothes!! I can feel clean.

One of the messages I get is from Gav who works for CLIC-Sargent he pop’s in, he has the tour shirts for Dubai, they are brilliant, he also passes on media pack from CLIC-Sargent for use in a interview I’m doing for Bristol. Pose for a cheesy photo for CLIC-Sargent with zombie dressing around a swollen neck.. if I was not smiling I could audition for the next Shaun Of The Dead. Due to these complications Chemotherapy will be delayed until Monday. I get the schedule of treatment. It works as 4 days on 4 days off. That does not include the I T injections which tends to be weekly. I’m going to be in the BRI a lot. Other consequences of this treatment pattern is that the last dosage is Christmas day and would be a double dose. They have booked me in as Father Christmas and are expecting an appropriate outfit.

While glad to be back I’d forgotten the problems of sharing a ward with 3 others, all it takes is 1 person to keep everyone awake. At 1130 in a ward full of sick people you would think people would turn volume down, or turn off. No, Once this clears I still can’t sleep & I’m needing the toilet every 15 min (you may think a little bit to much information but all will become clear in a second). After I get back after one of these trips I can hear faint jungle noises… I’m questioning my sanity now (“what year is it??) the jungle noise fades out and is replaced by a babbling brook no wonder I’m going every 15 min with this next to me…. Not happy don’t sleep much.

Thursday brings bag after bag of antibiotic, temperature is still fluctuating I am able to eat solid foods but appetite for hospital food is not that great. I was due to receive blood today but my temperatures have been far too unstable.

I am on a brief break from hospital (2 hours out, its actually the 1st Dec, I am still been kept in hospital most of the time but am ok, I will attempt to keep updates coming out but they may be a little delayed)

Admission: (Sun-Tues)

2007-11-25T09:24:00.000-08:00

Temperatures are high, end up back in hospital. They are trying to find the source of the infections, I now have a huge double chin so would have thought it would be quite obvious by now. I’m booked in for the day to monitor how the infections go, temperatures are all in the high 8’s. The thing is with infections you are never just in for 1 day… Temperature peaks at 39.3 in the evening and have a night of cold sweats followed later by burning up 20 min later.

Monday brings no respite, antibiotics start at 6:00am but the infection, as soon this is finished I’m taken to the dental hospital no time to shower or anything. Annoy all others in the queues by stating my name at reception and her saying wait there and me then been greeted by 3 dentists and lead away.

I see yet another doctor who looks at my file & whats happened previously. See then turns to me like it’s the first time I’ve been through this, “you need your Wisdom tooth out”. Yes, I’ve been saying that for weeks, so shy was it not taken out last Thursday… she replies I just need to speak to my boss. A surgeon eventually appears and just takes one look the xray and one look at me, “we operate this afternoon, wisdom tooth and drain to be put in,” then wonders off. This is explained to me after as been put under general atheistic to have both the wisdom tooth taken out and a small metal drain into my neck. I try to get them to admit the whole procedure on the previous Thursday was a waste of time, the dentist dealing with me clearly knows this so keeps changing the subject. It’s a bit of a told you so.. but far more of a why did I not push them harder and get a more senior dentist than the 2 dealing with me. Lesson learnt don’t back down to theses dentist they know their fields etc but they don’t know your body.

The preparation for surgery may be complicated as they do not know if my jaw will open under atheistic, these not only could cause trouble getting oxygen in but also access to the tooth itself. Before I know if I’m shuffled around wards and waiting to be taken into surgery. They give you a very attractive hospital gown and for some reason green stockings with holes in, no one could explain why this was to me. General Atheistic is easy one minute your imagining a beach and counting to 10 next you be disappointed to know you don’t wake up on the beach but in another part of the hospital. I’m transferred to a post op high dependency ward due to the leukaemia, this does not mean car crash victims or others in a bad way, it actually means the extreme elderly who can’ look after themselves. I’m stuck here as nurses on Ward 62 have no experience of dealing with drains. Everyone else here is 80ish. I soon find out I’m the only one not to have lived through WW2. Been in a ward like this brings a few surprises. 1st of all after one bout of my antibiotics I’m asked “what year is it? Then who is the prime minister?” I questioned if it was necessary to ask me those questions and apparently they are standard (I did not get asked again) However 1 other patient found a novel way round it.. when asked the prime minister he answered “well that depends if we are in England or Austria?) Nurses here do there best, this ward is not as clean or as smoothly running as ward 62. I’m actually looking forward to getting back to ward 62.

Drain comes out Tues afternoon, should be able to get back to ward 62 tomorrow.

Liquid Lunch

2007-11-17T12:02:00.000-08:00

I have another rough day on Wednesday, I am prescribed some very strong painkillers to deal with. These take effect by the evening and I'm able to sleep. All other drugs I'm on are stopped.

Thursday I am booked into get teeth sorted out. I go in, it should be a fairly quick process. However the dentists get themselves into a fuss regarding the drugs I have been on, how this should have been done before I started chemotherapy (it couldn't because all my blood counts were so low). They end up taking out one of my top teeth.. this was not what I was expecting but after questioning I'm assured it will stop the swelling in my mouth.

I manage just to eat solids for Thursday and Friday but the swelling increases on Saturday, I'm now on a liquid diet. I can't even manage to eat a small amount of bread. With the gap in Chemo I actually have my taste back as well... Is really annoying I'll be able to taste my food for a window of a few days but I am limited to soup, milkshakes and smoothies. I'm really not sure they have fixed the issue in the dental hospital. If it does not clear up next week I'll be really annoyed with them as the will not be another chance to get teeth seen to for at least 4 weeks as blood counts will be to low.

Friday was the start of treatment again. I was in for lumber punctures these go smoothly but once they are done you are stuck on your back for 2 hours. I learn a little Spanish while been regularly checked up on by the nurses. My temperature is fluctuating rapidly it goes from 36.5 to 38 within these 2 hours. I'm kept in for longer to monitor the situation, temperature drops back down to 37.5. I'm let home but only just. I need to monitor my temperature half hourly at home. I will be in hospital again if it hits 38. Extra blood samples are taken to check for infection, in particularly they check the my permanent lines for infection.

Bristol rugby pop into see me on Saturday morning, they bring me a Bristol shirt with initials on it. They also bring me some dvd's of Bristol games. Apparently quite a few people have been asking how I'm doing at the club as well, they would like to put an update on the website. We take some very cheesy photos to go with this. Also can promote CLIC (National Blood Service are a nightmare to deal in terms of arranging promotions with so have decided to help CLIC out with any coverage that I get). Its quite a good lift for a Saturday morning.

Temperatures are still erratic on Saturday, I don't risk going to watch any OB's games. I get a phone call in the evening and a infection has been found in my line. I need to now go in on Sunday to start antibiotic treatments. Its strange.. my blood counts are the highest they have been since they have been measured, I'd taken myself of all painkillers and apart from issues with my jaw am feeling the best I have for weeks. Hopefully I'll be in and out for the antibiotics, but if temperatures continue to fluctuate I may be kept in.... Fingers crossed I'm not.

Can't find you...

2007-11-13T11:17:00.001-08:00

Sunday night was rough.. I was in a lot of pain, I could feel every joint and despite been completely exhausted could not get to sleep. However once I was asleep I slept extremely heavily and woke up feeling much better..

In the morning I'm actually feeling good. I'm due in hospital around lunch time. Once I'm in I see various doctors and talk through my problems and various tests are done. I'm asked by the doctors if I've been boozing... I have not drunk for 2 months now, its more likely my liver is having withdrawal symptoms from booze. Before the treatment I would not have taken Aspirin for a headache my body is just struggling with the number of drugs been put through. They need to reduce the number of supplemental drugs I'm taking to reduce the impact on my liver. However this means coming of some of the antibiotics and anti-fungal drugs. This brings increased danger of infection. My immune system has so far proved to be strong so to be honest I'm fairly happy to come of some of these drugs.

Results of the bone marrow test come back as well, I was not expecting this until later in the week. The Chemotherapy is doing its job. The sample that they took had no trace of the leukaemia cells... Great news but before you get carried away.. They could not find many cells at all. The Chemotherapy kills both decent cells and bad they had very few cells to count so they can't find any diseased cells in a small sample. Its still good news that the treatment is doing what is expected, if the had been a trace in this sample it would have been a blow.

The week that I have coming up is an easy week in terms of treatment, the doctors want to see if my body starts to recover naturally after the treatment. After the weekend my blood counts are up without any top ups from the hospital. This is good news. On Wednesday I will be undergoing a lot further tests to see how I'm doing. Provided the results of these tests are ok I should be getting my wisdom teeth out Wednesday.

I also see my main consultant on Monday, he is happy with my progress the have been no real negative results so signs are still looking good. Lots of reasons to be happy.

Cheers for all of your support.

Robbie

Asleep, Dazed, Confused & Uplifting

2007-11-11T08:34:00.000-08:00

I have chosen to try and write my blog twice a week, so please do not worry if nothing appears for a day or so. (thanks to those who expressed concern as the was a bit of a break). I would try and post on a regular day but can't guarantee how I will feel or if I'll have time.

Its been a extremely tough week of treatment. The list of drugs in my system is now silly.

Ciprofloxin, (antibiotic)
Prednisolene (steroids)
Randindone (anti acid)
Allopurinal (side effects)
Co-Trimoxazole (??)
Meltronizyde (antibiotics)
Ambisome (anti-fungal)
L-Asparaginase (Chemo)
VCR (Chemo)
DNR (Chemo)
Lumber Punctures (Chemo)

This is while refusing to take any of the anti sickness tablets. This is another reason why not to update the blog on a daily basis as it would turn into a drugs and treatment top trumps.

All of the treatment has taken its toll on me. I have so little energy to do anything. Thursday I have a full day in and out of hospital. I have to go to the dental hospital to have tooth looked at, then have an afternoon of treatment on ward 62. The dental hospital is crowded and one of the last places I want to be. I end up finding the seat with the most room and spreading myself as far and wide as possible so no one trys to sit next to me. It does not really work. The dentist is quite efficient and I am in xrayed seen to and advised that my wisdom teeth may need removed. The gums have swelled up around them causing the pain in my mouth and ear. Some temporary work is done to relieve pressure and this helps relieve the pain in my ears. Some kind of a result. If my blood counts are good next week the may be a window to get the teeth removed. Could be a good result. After the afternoon I'm completely exhausted for the day. This carrys through to Friday. I have so little energy even moving to drink is an effort.

I have to admit at this point I'm half asleep, dazed and confused to what is going on. This state of almost complete inability is not natural. I am as weak as a kitten, from someone who is used to strapping up most injuries and playing on feel completely helpless. This is downheartning. However at these points funny things tend to happen. I have managed to log on email from my bed and at the point when I'm starting to feel sorry for myself I get a message from Milk Link. Followed by the delivery of several get well cards. This is completely unexpected and provides me with all the lift I need. I cannot thank those who keep sending me messages enough as they do make all of the difference in getting me through this.

The doctors I think have seen some sense, they know the European Cup is on this weekend.. they give me the entire weekend off as I think they know I'll be a nightmare if they try and keep me in. Also will allow me to go watch OB's 2's at home, if I feel up for it.

A few friends pop round on Friday night to watch Gloucester beat Ulster, is a good game and a very welcome distraction. Nose bleeds have started now, trouble is with the low blood counts once they start the blood does not clot.. You end up with a almost constant nose bleed. That combined with the increased sense of smell means you also get a fairly unpleasant smell most of the time.

My Dad arranges for my car to be advertised for sale, I won't need a car for awhile. Surprisingly it is sold to the first person who looks at it. Get full asking price, this is unexpected and great news. Another good lift.

I make it up for the OB's game, under strict instructions to wrap up warm, sit down, drink lots and don't shout to much. The opposition are incredibly week. Records are made to be broken and I think the final score is 74 - 3. I think that this beats my record when I was captain. Is a entertaining game although a bit of a piss take. After the game I take a few photos of the team. They get me involved in a few of them and I manage to demonstrate how weak I really am at the end I go to get up and if it was not for leaning on someone else I would have ended up face down in the mud. I'm not sure people at the club realised what condition I was in.. they might do now.

Saturday night I manage to break a 4 week record for sleep.. I manage 4 hours!! This is good.. However as I'm not used to sleeping this long I'm then awake. Awake for rest of the night.

Sunday I am a bit of a mess. I have no energy again, can't do much at all. Make it out of bed for 1:00 to watch Bristol vs Cardiff. While I am struggling Amy & Alex pop round and give me a boost. Amy's work mates have been reading the blog. Some of them have been through similar and knowing that they recognise the problems etc is uplifting. I am on and off asleep for rest of day but feel fairly good in myself that the blog is been used by others that I don't even know and they are to some extent enjoying it.

My parents have been looking after me this week, I must apologise for occasionally been impatient and not very helpful.. This is no reflection on the help you have been to me in the week but is just a side effect of tiredness and the drugs. I do appreciate everything that you do for me.

Also thank you all so much for supporting me through this keep the messages coming as I do read everyone and appreciate each message.

Cheers

Robbie

Tastes like Chicken

2007-11-07T05:40:00.000-08:00

Its now 28 days into phase 1 of the treatments. So far I have been in hospital everyday this week. This has taken a toll as have been half asleep all week. Have lost almost all taste now. Everything tastes like Chicken... however Chicken does not taste of anything either. Have taken to eating anything with different textures.

I have now had my first lumber puncture, and the bone marrow test. After this I end up having to spend most of rest of day on back to let Chemotherapy in the spine settle down. This stops me from sleeping much, wake up feeling fairly bad on Tuesday. I have now cut off my hair on completely so when I go through my list of symptoms I seem to get more sympathy than normal. The doctors and nurses are fantastic today. They can see I'm not feeling great and go out of their way for me. Hopefully some of the side effects can be treated making life a little more comfortable. In a situation where the main treatments are so long term any quick wins would more a massive moral boost. I am referred to a ear specialist on Wednesday hopefully get one of these sorted out. Also get given some further medication and painkillers to treat some of the other side effects.

I am been looked after well by Mum & Dad since Iain has gone away. I am feeling a little crowded, however this is partly down to been tired and the effect of the steroids. Dad has had a look at car and is helping me get it ready to sell. Would be fantastic if I can get it sorted while they are here as will save me meeting random people picking up infections. Going to advertise for £695 but will see what I get offered.

I see the ear specialist on Wednesday, I really hope that I can get this problem sorted. However it is decided that its probably a referred pain from my mouth. End up booked into seeing a dental specialist on Thursday. I suspect a tooth may need taken out, however will low immune system and hemoglobin this may not be possible until after treatment. I will have to wait and see what is said tomorrow.

After a heavy first half of the week, I am still tired on Wednesday morning, however the extra blood which I was given on Tuesday begins to kick in by lunch and things start to pick up again. Ups and downs are what I have to expect now. As long as the bone marrow test comes back positive then it is all going well whatever the food tastes like..

Hair Today... Gone Tomorrow?

2007-11-03T04:27:00.000-07:00

Test results on Iain & Helen are back on Wednesday. Unfortunatly they do not have a match with me. This cuts down the potential options of treatment, however that is not to say it would have been the best option anyway. Transplants are very risky and it may be that further Chemotherpy would have been better option anyway. This makes no difference to the treatment that I will be having in the next 5 weeks regardless.

Next milestone happens next week. Bone marrow tests on Monday will let me know how the treatment has gone so far. Hopefully that will show the Leukeamia in retreat. Treatment then switchs over to a second type of Chemotherpy and other drugs. I will be phased of the Steroids which may mean sleeping might get back to normal. I'm sure the other drugs might give me some other issues but I'll deal with that when I get them.

In terms of side effects the treatment has been tougher this week, energy levels are extermely low and I have developed back spasms and pains which the doctors can't explain. These are quite severe but have seem to be clearing up. These symptoms do get to me a little on Friday morning... however in a timely manor I seem to get a volley of support from different people, quite surprisingly Matt Salter turns up with a rowing machine for me.. I'm still half asleep when he gets here. While it might be a week or so before I can use it, the support means a lot to me and motivation is back... Friday I start to recover from the heavy weeks treatment. Mum & Dad arrive Saturday morning, the rest on Friday does me good and am doing quite well on Saturday. Very glad as can get to head out and watch some rugby in good weather.

Lastly the challange of growing a mullet is coming to an end.. While its not coming out in clumps yet I very much doubt it will last the week. The winter hats are all ready for when this happens. Its been expected and another sign the treatment is doing a job..

Backrow Battles

2007-10-30T02:24:00.000-07:00

Any illusions that I can breeze through the treatment are gone... I knew I had been lucky so far but the latest round has taken its toll. I had a new Chemotherapy on Saturday, I did not like it one bit. Went into a cold sweat mid way through the injections. This one was directly into muscles and gave me 2 dead legs to remind me of it after. Did not feel good for rest of evening. I missed Ronan's stag... although had plenty of photo updates and managed to implement a few fines and a no hands soup. I'm pretty gutted to be missing out on the banter, Saturday nights are going to be dull for awhile yet and I'm going to be such a lightweight when I get back on it. I will need to think of some ways to distract myself for the coming weekends.

Temperature is high. Risen above 37d for the first time, it continues to rise and I barely have the energy to move. I can't sleep but can't keep my eyes open, its a complete limbo. Gums have started bleeding (this is a normal side effect which I knew would come). It feels like I've been in a drunken brawl and come out second best.. Temperature keeps rising. You can feel the pressure of the drugs building in your system but the is very little you can do about it. However I manage to find a way of cheating my way out of it.. normally I never drink any caffeine but find that I can wake myself up for around 2 hours then sleep using it. Using this I manage to enjoy Bristol vs Llanelli then pass out. Temperature is now 37.8. I phone the hospital if it rises once more I will have to be admitted tonight and given antibiotics to get rid of any infection asap. Defiantly made right decision not to pop into Ronan's or Dirty's party.

While I may feel like crap... this is good. I've managed to get through 3 weeks of chemotherapy without feeling that bad. I've got momentum on my opposite number the treatment is hurting both me and the disease. My swollen jaw just reminds me that when I'm playing well the opposition always get a few punchs in as you disrupt and steal ball. I'm in for a fight but everytime I feel bad it is hurting the disease more. Seeing the fight in these terms makes it a lot easier for me to deal with.

Tempreture falls and manage to avoid hospital for the night. I am in tomorrow for more chemotherapy, wake up feeling a lot better. I get a full check over by a consultant in the hospital... I don't trust him. His favorite phrase is self-diagnoises. I think he is blagging and does not know what he is talking about, he has not told me anything useful anytime he has seen me.
I actually trust the junior doctors and nurses more than him. My consultant is not back from holiday yet, I'm still awaiting test results but the is no way I'm going to discuss them with the stand in consultant.

Proud Of Friends \ Chemo Mullet

2007-10-25T21:40:00.000-07:00

Its now 5:00 am on Friday morning. The drugs I am on have completely confused my body clock. I cannot sleep for more than 2 hours in a row. I know I will be knackered later but trying to sleep is futile so have decided to get up.

Yesterday I was taken back by my friends generosity... A group had got together and gone and got me a xbox 360... Its a unbelievable gift, one that will help me pass the time over the next few weeks. AJ popped it round on Wednesday night.. Thursday morning I put on a OB's tour shirt to head to hospital, I've never been so proud to put on a rugby shirt... a club and friends who do that bit extra for each other. I will owe more than a few beers to people when I'm through this.

Wibbles and Emma came down during the week, plans for celebrations are already underway. Stock car racing at his parents will be hilarious. Its good to see them and I am glad to show them that I still look well.

This week has seen a few more side effects kick in. None that bad... Wake up each morning with pains in joints from where toxins build up, legs are tired most of the time and have a mild hangover (this could be just withdrawal symptoms from not drinking for 4 weeks now). I'm still eating like a horse, have not had any sickness and have been turning down the anti-sickness drugs, also my hair is the longest it has been for 10 years. Its almost a mullet now. I was expected to lose it last week. I could be the first Chemo patient with a mullet!!

I have still been asking if I can do any work from home. But am starting to realise that its not going to happen. Everything is now revolving around blood counts, how I'm feeling. Any work I got given would be deadline driven and I can't guarantee I can meet any?? Its frustrating and makes me feel slightly useless but I need to find other things to occupy me.

Hospital has me booked in for the whole of Thursday, I'm due 2 units of blood, ambazone, platelets and Chemotherpy. Its going to be a long day. This is not helped when the my body seems reluctant to give a blood sample. Despite last weeks operation the tubes from my chest won't allow the nurses to get a sample. I have to pump the opposite arm and breath deeply to get blood to flow... I'm sat in the middle if the ward doing a water pump impression until they have enough blood. I'm hoping this clears up otherwise I might be in for another operation.

The remainder of the treatments go well, just plug in and wait. Read all of Jono Lomu's autobiography in a day. Will be in need of more books again soon. I see Merv, who was admitted shortly after I was diagnosed, he had been in isolation since the 8th October and only just been allowed out. That's what I thought was going to happen to me. Thank God it didn't I would have gone insane. He is getting through the treatment quite well and has also gone a bit OCD. Also see Karl on my way in.. he is attached to a drip sat outside the hospital smoking a fag. Feel like giving him a slap for been so stupid.

Weekend is coming up, Sarah is doing a houseparty and its Ronan's stag. I would like to make a token appearance to both, but however the closer the time gets I realise its not a good idea. The will be other party's, going along will just be putting myself at risk, I've been lucky so far and want to be able to remain at home for as much of the treatment as possible. Picking up a silly infection would be a big set back. For the moment I still need to be "bubble boy". I'm not liking the isolation this causes. I crave been able to head out, not worry if who I talk to has a cold, not worry if glasses would be clean. Having a relaxing social night out seems months away.. Bugger.

The local..

2007-10-22T01:29:00.000-07:00

I should know better by now. I am due in for a checkup at the hospital I think they will just be putting me on a drip for antibiotics and perhaps some platelets. This should mean I'm home for lunch. In a scary way all the nurses greeted me in and I recognised the majority of the patients in the ward. The ward in a strange way resembles a local pub... You walk in and are greeted by nurses who all know your name, start chatting to others in the same situation, but instead getting a nice drink you get hooked up to another drip.

Blood count results are not good. Haemoglobin count is down to 6, normal is between 14 and 17. But I feel fine?? It is decided that I need a further 2 units of blood on top of what I was due that day. I'm now booked into the hospital for the day.

I've made a start on Lance Armstongs book. I can relate to his experiences so clearly. In fact I've nearly finished it already. Also made a slow start on learning Spanish. Must make use of this time waiting.

As the week progresses I still don’t get used to not working. I am still able to wonder round without any difficulty so pop out to get lunch when I’m at home. However feeling very OCD, I walk into Somerfield and its crowded and quite a few people who look ill to me. I end up leaving quite quickly. For the rest of the week I am in and out of hospital and the nurses start to run out of spaces in my arm to put needles in. I will need an operation to put a permanent line into my chest by the end of the week.

Second round of Chemo is on Thursday. I am expecting to have more side effects this time, but am relaxed about the process itself. Still no side effects.. Maybe I should ask them to increase the dose?? I may need to get a haircut after all.

Friday morning and I arrive early into hospital for the operation. It does not really feel like they can do much more to me so surprisingly not that worried about it. I don’t think the guy in the bed has been in hospital much, after been asked what he wants for breakfast he requests croissants and jam. He is actually surprised when they laugh at him. I am on nill by mouth until operation is over, the talk of food is making me very hungry. Bizarrely the treatments are making me more hungry rather than less? I eventually am wheeled of to surgery at 10:30.

During the surgery I will have local atheistic and should be able to feel the tubes been passed into my chest. After a few initial prods the procedure is fairly painless, spent most of it talking about wine & rugby. Before I know it I’m all done… But now I have a permanent tube coming from my chest. This will be with me until the treatments over. It’s the first physical mark the disease has had on me… However when it is removed it will be a huge milestone. For now I will just have to learn to live with it.

Will “King Of Lao” comes round for rugby complaining he has not had enough mentions in my blog, France play Argentina in the 3rd place play off in the world cup. It turns out to be a great game and with Will supporting France its hilarious to watch them fall apart with PTB & Whittle.

Helen is down for the weekend, after a brief trip to the hospital its good to get some Fresh air and head up to OB’s to watch the 3rd XV vs St Marys. It’s a typical 3 XV fixture comedy to watch at points but very entertaining. Rob The Tan scores a 70 m try, followed by Monty. I’m glad to see quite a few of the team but just wish I could be out there on the pitch. Also in a way glad to show my face so people see that I’m not on deaths door. Unfortunately can’t stick around to socialise as aware of infection risks. Also is a shame I can’t watch the world cup final with the team..While I have been lucky with treatment to date, some side effects are taking effect.. sleeping patterns are all over the place and ending up sleeping throughout afternoon. I know that this will get worse and am starting to realise how much of a long haul this will be.

Working Week

2007-10-15T09:31:00.000-07:00

Waking in my own bed on a Monday morning, I feel like I should be heading to work. Instead I have a new routine. Wake up, take tempreture, take drugs, and plan the day. I make a pact to myself I will not watch any daytime TV.

Instead I contact the national blood service to get something moving on arranging some kind of promotion. Also vow to get this blog up to date. I'm hoping the next few weeks will have less surprises and that now that the worse case scenerios have made themselves known more postive news will follow. Hopefully I can keep up good form and battle through this in no time. Start looking at different Spanish courses and send a few queries to tutors in Bristol. A list of things I want to do when this is over starts to take shape. Inca Trail, Dubai Sevens, Bullrun, Be able to speak at least Spanish, Possibly rugby coaching badge.

As it is the working week I also become aware that I am going to be out of the loop at work for 6 months. When I come back I will be effectively starting a new job.. I do not want to stay out of the loop. In fact if the is any work I can do while I am at home I want to do it. Worse thing I can do is sit on my arse all day. I need to be doing something. If I don't then all this time will be wasted.

Escape From Ward 62

2007-10-14T09:19:00.000-07:00

I'm up early. The ward was quite last night. Only me & Uri are in the room. He was diagnoised in Peru. The is no national blood bank or transfussion service there. You rely on friends, or paying someone in the street to help you. To get treatment your family have to sell everything they have.. I doubt I'll ever complain about the NHS again. In Peru he was given his last rights, they said he would die. He married his girlfriend while in a wheelchair borrowing a suit jacket from his best man and making do with whatever rings they could find. He has lived on and is in the UK now, those rings mean more to him and his wife than any diamond ever could.

I'm keen to get out of here. The standard observations and blood tests are done. While they take my blood pressure and other details I stare at the monitor hoping they are ok. They are and I'm released. Its such a relief.

Its good to be at home. A comfy sofa, my own bed and a bit of freedom. I'm not sure if it was the drugs, been up early of or just the sight of my own bed but I sleep for a few hours in the afternoon waking to watch the South Africa vs Argentina game. If Argentina had played like this against Scotland they could have beaten them. South Africa look strong I can't see England beating them, but all my predictions so far have been wrong.

Who's Betty

2007-10-13T09:02:00.000-07:00

Best nights sleep yet. I don't wake when the nurses come round to replace my drip. The previous day when Charlie & Lexy had popped round we dressed up the stand in a old womens dress, red wig, Elton John glasses and a banana for a smile. I'd forgotten about this when I feel asleep, it had scared the nurse who came in the morning. But made me laugh although it did look a little worrying in the dark.

Still no real signs of symptoms of Chemo. People are planning on popping in throughout today. Proves to be quite a uplifting day. I promise to teach Uri the rules to rugby in time for the semi finals. Seen as he is from Peru and never seen the game before might be a challenge. He still reads through Rugby World and enjoys it.

Doctors come to see how I'm doing... They are surprised how well I'm responding. Body has not had any adverse reactions to the host of drugs they have put into it. No signs of infections, tempretures, blood pressure, oxygen levels are all normal. I may be able to go home tomorrow!! I had prepared to be in here for 3 weeks. What a result. Part of me thinks this is because they think I'm going mad in here. The is no pressure for beds so I am happy they are not clearing me out to make room for someone else. Going home, my own bed, can make my own way round. Small pleasures make such a big difference. I don't want to raise my hopes to much as they will still need to do blood tests before releasing me.

Somehow England beat France in a pretty poor game. My argument Scotland will go further than England is looking pretty poor at the moment.

Reality Check

2007-10-12T08:29:00.000-07:00

I have not slept again. Despite been tired the was no chance of sleep. Last night a man was brought in on Oxygen. One of the side effects of Chemo is your sense of smell is hightened. I smell the man coming before he even entered the room. He stinks of cigarettes..

His lungs are filling up with fluid. Nurses are desperatly trying to help him. He keeps trying to talk despite nurses trying to stop him from doing this. Each time he does this he chokes and takes another 5 min to recover. The choking is spine chilling, he is in trouble.. So far I've seen people at the tough stages of Chemo but not close to the edge. He has come out of Chemo and infection has taken him.

Even with sleeping pills I can't sleep. I try sleeping the the quiet room with no luck. Eventually he is taken to A&E at 5:00am. I ask the nurses if he is ok later in the morning, they can't tell me. But why was this man smoking?? He must have known the effects it could have.. he may not be able to control the leukaemia but smoking he can stop. Its a black and white decision, I don't understand. With this my resolve to get through the disease is strenghened. The stats lie. The stats include those who ignore advice, those who were unfit to start with, those who resign themselves to the worsed. I will do everything I can to be on the right side of these statistics.

I get a surprise visit from Bristol rugby, Andrew Blowers, Ben Sturnham and Geoff Moon pop in. Despite been a big club its good to see that they still value the community and the efforts I have put in at Bristol over the years. I think they are surprised to see that I'm in good spirits. They ask what the club can do for me. Bristol are in a position where this situation can be put to good use. I ask if we could do some kind of promotion for blood transfussions and doner services. I may not have given blood but this would go a long way to making up for it. It will also give me a good destraction to organise this.

Have lost all appite today, and am tired after last night. Visitors come in but I am drained and not much company. I am desperate for a goods night sleep.

Happy Chemo...

2007-10-11T08:09:00.000-07:00

I have not slept. But feeling good. I want to get started. Just in case teh Chemo makes me feel sick I decide to eat as much as possible. It feels almost like a inmates last meal. First round of drugs arrive. The main drug is steroids.. tastes awful and I'm reminded my moods might go a bit funny.

I should know that if I'm told something will happen first thing then it won't. The Chemo is not ready. It won't be until lunch. Lunch passes, I eat as much as possible again. A time is set for 3:00. From 2:00 I am stomping up and down the ward getting ready for it. 3:00 passes. I'm getting stressed and annoyed with nurses. This is partly down to tension building and the steroids. I take myself out of the ward and go up and down the stairs several times. My legs still burn from lack of oxygen in the blood but I need to do something. They need something to relieve stress in here. This waiting comes to symbolise the effect Leukaemia will have on my life. Its unplanned, I can't control it, I just need to be patient and take care of what I can control.

Phone is filling up with messages of goodluck. I don't reply to any but take heart in the fact people are thinking of me. I'm turning visitors away as I want to know what treatment will do to me. It gets to 5:00 I am resigned to the fact it won't happen today so a few people arrange to pop in after work.

Just as Phil & Will arrive so does the Chemo. I did not really know what to expect. Its a series of injections. The build up does not match the treatment. It is no different from having a drip. Its painless and passes without incident. Now I've had the treatment its waiting for the sideeffects to kick in. The first does shortly after. Wee turns bright pink. They did not tell me about this... After checking with the nurse its normal, actually shows kidneys are working properly.

Charlotte pops in and brings a laptop. I'm connected to the outside world. Now I don't feel so isololated. I catch up on messages of support and whats been going on outside ward 62 for a few days. Makes me feel so much better.

Waiting Game

2007-10-10T07:56:00.000-07:00

Now I just need to wait for test results. As far as I know I don't have any more tests for today. A treatment timetable is passed to me but would only ever make sense to the person who wrote it. Most of it is irrelevant as depends on how my body reacts to treatment and results of tests.

Positive news is that Chemo starts tomorrow. Should be able to get started first thing tomorrow. Side effects are explained to me, mood swings, pins and needles, sickness, hair loss and of course no immune system for a few days (Just in case I was not going to go OCD on cleaning hands etc already). Nurses try to get me to read leaflets. I ask if the is anything extra in their other than what I've been told.. the isn't so I push aside and ignore. One of the nurses who I have been talking to quite a bit will be giving me the Chemo so will talk me through it.

Have a few more visitors, I don't think I can hide any excitement about starting treatment. The sooner it starts the sooner I can get back to normal and out of here. I have a few hours to myself after. This place is starting to drive me crazy. After losing a few hours reading and listening to music I head back into the room. It stinks of sweetcorn. Karl has had a stem cell transplant. It has the strange side effect of producing this smell. Its extremely strong. I'm keen to get a good nights sleep before tomorrow. A new patient arrives and snores like a broken exhaust pipe. I long for my own bed and a good nights sleep.

I'm not a cripple, just a little paranoid..

2007-10-09T07:25:00.000-07:00

After morning routine nurses sits down to go through plans for today. I am going to be busy today. Due a CT scan and have to go to Southmead for some further tests.

I have no idea what a CT scan is, nurses and doctors assume that I know about these things. Its a 3d xray of my internal organs to check my kidney and liver are still working. I may regret those extra jugs in Lizard lounge after today? To do this scan they make you drink various dyes which will show up on the Xray and then inject you with some radioactive liquid. I am brought a jug of orange juice containing the dyes. I'm told it will taste horrible and I have half an hour to drink it. Turns out it tastes exactly like one of Lizard Lounges jugs.

To head to the xray a hospital porter is sent to collect me. Despite still been perfectly able they insist that I go in a wheelchair. I'm not even allowed to help hold doors open. I have been stuck on this ward since Sat so would have appreciated the walk but insurance policies won't let me. The xray itself is a strange experience. A fluid is injected which sends a burning sensation into the veins. You are then passed through a donut shaped machine like paper through a photocopier. I've already been in the hospital to long, I actually quite enjoy it.

I am meant to wait for the porters to come back and collect me. I think visitors are waiting for me and the porter may take awhile. I decide to leg it, with a little help I find my way back to the ward.

This afternoon I am shipped off to Southmead. Taxi drops me at the wrong place and I wonder round the hospital searching for the right ward. Eventually get this sorted and tests done. However the is complete confusion over the taxi taking me back to the BRI. I end up waiting around reception for over an hour. The are so many diseased people about. I know my immune system is shot and don't want to be anywhere near them. I going a little OCD. I've never been so aware of each cough or splutter. I really don't want to be here.

Finally get back to the BRI. Charlie who has helped me deal with everything is been released today. In a strange way I think he is sad to go.. We have got on well over the past few days and he has helped me realised how to tackle the upcoming hardships. Once he is gone the ward falls silent.. Everyone left is in a self imposed isolation.

Welcome Distractions

2007-10-08T07:04:00.000-07:00

Hospital is no place for me, woken at 6:00 for routine observations. Once awake you may as well get up and wonder around. But the is nowhere to go. After 2 min you have said hello to all the nurses circled the ward and are back at square 1. Trouble is the doctors have told me this is to be my home for the next 3 weeks..

As I was first up the doctors decided to get all my tests out of the way. A further bone marrow is required. Think the doctor this time is more practiced and it is over quickly. As I know what is coming up even manage to read the sport in the paper for the majority of it. Following this another doctor wonders in to take blood. My arms are fast becoming pin cusions.

I get the first visitor of the day. Phil The Bear is waiting for me once I leave the treatment room. News is spreading fast through Bristol and beyond. We chat and tend to avoid conversation about the Leukaemia. Helen arrives she flys back to Glasgow today, Get a phone call from Australia from Weaver & Claire, followed shortly by a phone call from my Aunt. The rest of the day is a revolving door of visitors arriving and leaving. It is the best medicine I could have at the moment best distraction that I could have. I had planned to read papers and get through a few books but in the end I don't have the time.

I've had to cancel going to Dubai for the sevens, Rob The Tan comes in and has a plan to replace me on the tour. I will be there in spirit and amasing tour fines. I will have to make up for it next year when I can make it again.

Finish the day chatting to other patients, they are all quite jealous. The BRI centre is one of the main centres in the UK. People come from far and wide to be treated here (some have even relocated). As I only live a few miles away and most of my friends are close by I will have no shortage of support and distractions.

3 Pints Later

2007-10-07T09:14:00.000-07:00

Last night I was given my first blood transfusion. I have a tube now attached to my left hand. It looks like I might have this for awhile. Its a strange feeling, the first bit of solution sends a cold feeling up into my veins. The first transfusion starts at midnight, it last 3 hours with this and the hospital noises I don't sleep and end up reflecting on what has happened.. Think for a few hours how grateful I am to whomever provided this blood without it people on this ward would never make it through their treatments.. Why have I never given blood??

Nurses come round at 6:00 to take blood pressure, temperature etc. This will come to form part of a daily routine. The next pint of blood is attached to me. The pump is plugged in to the wall, as the ward is full of long timers, not much is explained to me. I assume I'm bed bound. Until I see Colin wonder by attached to a drip. I know my parents will be flying in soon. I don't want them to see me with a bag of blood attached. I ask Iain to delay them, at least then I can present a healthy image. Unfortunately another bag is required this will take me up to 12:00.

Mum & Dad arrive, they seem to relieved to see that I actually still look well. They have been researching. I don't want to know. The are many types, possibilities and test results to come back. So much pf the information they are now talking about could be irrelevant it just serves to fuel uncertainty.

I tell my parents what has happened and what I know so far. I'm not expecting to find out much more today as the consultants are not expected to be in until tomorrow. So I am surprised when he turns up to see me. I ask to speak to him alone before speaking to my parents.. I want to be able to take in any bad news before telling Mum & Dad.

The is so much to take in. I have Acute Lymphoblastic Leukaemia (ALL). In all honesty I don't care what its called but just want to know how to get rid of it. I'm talked through the stages of treatment. I will be having Chemotherpy within the week. The initial treatment will take 8 weeks and get the leukaemia to remission. The is a 90% chance of been able to do this. Thats good right... Without further treatment it will come back and will be harder to get rid of. Long term survival rates are 50%.. How do I get on the right side of that stat.

The treatment options after remission will vary, Iain & Helen are going to be checked to see if they have a tissue match. Very thankful for having brother and sister right now.

Still so many unknowns, how I respond to treatment, infections, further tests etc. The doctors cannot tell how it will effect me, every treatment is different and all people react differently. The only thing to do is take each stage step by step.

I can take all this in. As I'd prepared for the worse most of this is expected. Its time to go through this with the parents. The research my Dad has done means he asks further questions. The doctors don't have answers yet... A few points clearly get to them, I just hold it together through this and am relieved that its over.

I'm taken for an xray and get a few hours break from parents, they come back later to watch rugby. My dad has been on the whiskey to calm his nerves. It will go down as the worse place that I will ever watch Scotland play rugby. We watch it in the quiet room. Scotland make far to many mistakes to cause Argentina any worries. They do manage a good try. Dad jumps up and celebrates and then realises where he is. A nurse comes in to see what is going on.. Most excitement on this ward for awhile. Scotland lose.. not my lucky weekend.

Facing Up..

2007-10-06T09:08:00.000-07:00

Friday 6th October.

Weekend is here and apart from this flu that I seem to have I'm feeling good, a weekend of watching rugby and a a big night out planned after. If I can will make it to help with mini's training although still feeling a little run down. 2 drinks will probably make me feel better.. On way home & get a call from doctors, a little strange its 8:00 bit late. They say I may need some further tests done tomorrow on my Bone Marrow?? I have some ideas of what this might be, I push to the back of my mind. It can't be that bad.. I played rugby last week although incredibly badly (some might argue I do that every week).

Saturday 7th October.I'm up early, waiting for call from Soutmead Hospital. I just want to get this test done and over. If I can get out by 1:00 can still bench for AJ, if not I can just watch Eng vs Aus judgement day for Eng who on form should be knocked out. Get the call at 10:00 they want me there at 10:30. I still reassure myself that it will be nothing so drive up by myself. I head towards ward C, not sure if this is the right place, its the ward for acute illnesses. Everyone here is triple my age. The nurses ask who I'm here to visit? I'm checking in.. Other patients stare at me as I'm lead to a bed. I'm too well to be here, I'll be back to normal by next week. I'm sure they think I'm a fraud some hypochondriac looking for attention.The doctor arrives, he looks about 20, spotty and nervous. He explains the bone marrow test. This is going to be unpleasant. I just want to get this done and get out of here. I will need a drink after this, lucky the world cup is on..I assume the position, lieing on my side arse sticking out. At this point I'm glad no one came with me as the is far to much potential for crude jokes, when I get to the pub later will hear them all. 2 doses of atheistic and he is ready to go for real. I don't feel the needle go though the skin, next thing I know the is a Needle on my Spine! I need something to distract me. I start counting squares in the curtains just don't think of the needle. He blunts the needle on my bone. He has to start again... Takes another 2 attempts to get enough of a sample of the bone marrow. He complements me on the strength of my bones, I'm not that happy about it at the moment. Especially as the next needle needs to drill into my Spine. He struggles to break through, feels like he is using a small corkscrew. If counted all the squares I can see and start again.After we are done the pain subsides quickly. The doctor shows me the samples as if I should be proud. Really don't care just want the results. I am to stay at Southmead while waiting. The student nurse who was watching has gone pale. Makes me look quite healthy in comparison, says she thinks I'm really brave. I think about telling her about counting squares but stop myself.I hate hospitals. I want to get out of here and get on with the weekend. Its now 2:00 I was meant have results at 1:00. I start watching Eng vs Aus, not paying much attention now starting to worry about results. 2 doctors return.. One of them clearly senior to the doctor that took the sample. He is looking very sheepish. This is bad.. Curtains are drawn and the news is broken.All I really heard from the conversation was Leukaemia. I can't take in anything else. Its does not sink in, it is still registering. They leave me alone a nurse will be with me in a few minutes. Still takes around another minute to hit me. World has just turned upside down, immediate thoughts are of what I'm losing. I think of all that was going well, all things I was looking forward to. Dubai, Brizzley Bear, Prospects at work, Skiing... everything was going so well. I have so much to lose friends, family, house, CIMA . Its all over..Nurse arrives. Asks if I'm alright. I can just think of what an absurd question this is. I actual half go to laugh then breakdown into tears on her shoulder. In all honesty I don't know much about Leukaemia so what am I crying about. I'm crying because of the fear, all I know is that it can kill me.I'm here on my own, and calm down I am been sent to a specialist unit at he BRI, I need Iain to drive me and need to phone parents. I am trying to pull myself together. I don't want to cry down the phone to either. I go to dial but can't I need more time. How do you tell your parents this??Iain is on his way. I have 20 min to sort myself out. Walking out from behind the curtain I all the old patients stare at me again. They were staring at me questioning why I was here but not because they thought I was some fraud, but because they knew I was in for bad news, they were looks of pity. While I have not fully comprehended the impacts this will have I think I'm ready to start dealing with this. I just need to get past today at the moment. As I'm going to be in hospital for awhile, think of learning a language. The must be something good that can come of this. Underneath I still have the fear.I'm taken to the BRI by taxi while Iain takes my car home and goes to collect changes of clothes for me. I'm told I'll be in the BRI for awhile. I'm lead to a bed at the BRI this still does not seem real. I don't think I believe its happening. Thoughts dwell on the fact I've had a good life, no real hardships, lots of goodtimes, I really can't complain. Before I've even talked to a doctor another patient greats me, I expected everyone in here to look half dead. He looks normal. He seems fairly upbeat. With this I realise that the disease and how I handle it is up to me. I may not have been able to control getting it but the way I respond is up to me. I can sit back and fester or fight it, I have had a good life, I am more than ever grateful for what I've got. But... thats even more reason to fight more. While I'm stuck with this disease but I resolve to come out of this and fight it won't hold me back. How sweet will it feel when I rise above it, how good will my next try for OB's feel, how good will it feel to run out as Brizzley at the memorial, how good will be to be in the bar and drink to the future with friends. I'm not done yet, beating this will just make life that bit sweeter to live. I have everything to fight for.With this I'm ready. I don't want anyones pity, time for sympathy has passed. I've been dealt a crap hand. The first thoughts are always the worse fears. I have looked at the worse that can happen. I may not be able to control much about how this disease effects me but I can do my best to make sure I come out on top. I believe I can beat it.. I have seen someone who is beating it. If the mind believes the rest will follow.Consultants explain what has happened to me at the BRI, blood counts are all extremely low. I have half the oxygen in my blood as I should. White Blood cells are low as well as Platelets. This means my immune system is not working properly and explains so much of why I had not been able to train or play properly over the last 3 weeks. Treatment is needed asap.. As immune system is low they need to keep me in hospital. I will be here around 3 weeks and off work for at least 6 months. Life is on pause but so is so much more to come.With this in mind I can face talking to parents, I feel confident I can reassure them. At the end of the day I am still healthy. I'm fit, young and my resolve is growing. I can beat this. They fly in tomorrow and Helen flys in tonight. Support is arriving and I need it.