Monday 8 December 2008

Fancy Dress Workout

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

Tuesday 11 November 2008

Robbie's Funeral Arrangements

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

Saturday 8 November 2008

Man of Steel

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

Saturday 25 October 2008

All Aboard Noahs Ark!!

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

Tuesday 14 October 2008

Baby Boom

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

Sunday 5 October 2008

Anniversary

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.

Tuesday 30 September 2008

Guinea Pig

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

Monday 22 September 2008

Stop Press... Good News Day

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.

Sunday 14 September 2008

Daily Slog

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.

Saturday 6 September 2008

Prize Fighter

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

Wednesday 20 August 2008

Fairground Attraction

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.

Sunday 10 August 2008

Back By Popular Demand

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??

Sunday 3 August 2008

Mini Hammer

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.

Saturday 26 July 2008

The "Jazz"

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.





Friday 11 July 2008

Wheres my Mojo??

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.

Tuesday 8 July 2008

Time Standing Still

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.

Thursday 29 May 2008

Beer?

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

Thursday 15 May 2008

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

Thursday 8 May 2008

Summers Here!

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

Wednesday 30 April 2008

Progress??

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.