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.

Run Before You Can Walk?

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

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

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

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

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

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

Discharge (2nd April to 10th April)

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

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

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

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

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

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

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

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

Robbie

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

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

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

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

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

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

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

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

Robbie