The journey post transplant

Well, I got over influenza and was feeling good unfortunately this didn't last for long graft versus host disease reared its ugly head ( GVHD) it was the coldest snap in the weather in January, and I looked like I was sunburnt then things got a bit naughty I got GVHD in my mouth and throat my mouth and throat face swelled up to the extent that I was unable to swallow my mouth became ulcerated and bleeding this was a worrying time the doctors didn't say anything it was the look on the faces said it all.

Once again eating and drinking were a real issue I was now fed through my arm yes my arm I thought the flue was bad well it was nothing compared to what is happening now but like I keep saying the glass is half full and not half empty.

Eventually, things calmed down and things started to get better what should have been a three-week stay In the hospital turned into six weeks I was now told I could go home with what I can only say looked like a mobile pharmacy I have never seen so many boxes of drugs.

It was my first night at home and I have to say what a treat I had been looking forward to this day for a long time Saturday morning up early making coffee all was good lunchtime came around and things changed big time I now find myself in the back of an ambulance blue-lighted of to my local hospital my breathing had become a problem eventually they got my breathing under control nebulizers and steroids seemed to do the trick we want to keep you in over the weekend Mr. Shaw eventually they put me on a ward hmm I tried to explain that I am post-transplant and have no immune system there answer to this was to pull the curtain around my bed the day I came home from there oh you really should be in a side room no I shouldn't you have put me at unacceptable risk funny I have never been discharged from a hospital so quickly and told if it happens again please don't come here go to Barts.

A day later NHS sent me a text message can you tell us about your stay at Basildon Hospital oh the joy I had sending that reply let's just say I was blunt and straight to the point with them.

So that's my journey so far with the transplant my wife Jennie and I still have a long way to go we are not out of the woods just yet but we are getting there and yes the glass is still half full you do need a positive attitude and be physically fit mentally without this attitude you will find it difficult don't ever be afraid to talk about your illness everybody's leukemia story is different but at the same time you can relate to what's happening to someone else I have a good friend Steve he was in barts the same time has me and yes like everyone who first goes there at first you feel like a rabbit in the headlights of a car this was the same for Steve and me an old ad that was used for bt for the tv comes to mind its good to talk you don't have to be alone on this journey.