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.

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.

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.

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

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!

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??

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.