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.