Thought it was about time for a long overdue update!

So it has been a while and I must apologise for that.  Life seems to have taken over and I have neglected my blog.  The plus side is that I'm still here to write this and have a life, of sorts, but at times I wasn't sure I would be.   However it has been a very long and difficult journey which I have not yet finished.  I'm going to do a few updates to cover the time since my last blog in March.

I last wrote when my bone marrow transplant was not doing so well after getting the CMV virus and being treated with very toxic damaging medication (Valganciclovir).  Well unfortunately that transplant failed.  My blood levels never recovered.  I was left with no immune system or working marrow at all so I spent a long time in hospital while they kept me alive with medications, blood and platelet transfusions.

I think this might have been my darkest time.  I had spent most of the past 6 months in an isolation room in hospital, aside for the odd day when I'd be allowed home for a bit.  I was so unwell that it only took a day or two before I got an infection and had to rush back to hospital in Northampton and get taken by ambulance down to London.  I remember one particular point when I really thought it was the end.  I was in Northampton Hospital with severe Graft vs Host Disease in my skin, liver and gut.  I spent most my time in the bathroom as I was constantly vomiting, had chronic diarrhea, was on oxygen as I couldn't breath properly and had a raging temperature.  I remember my brother visiting me as he had to fly back to Australia that night and I broke down saying I couldn't do it anymore.  I seriously thought that was the last time I would see him.  I was sent by ambulance to London that night.  These were the roughest few months.  My marrow was not working, I was very ill and just didn't know what was going to happen.

In April it was decided that I would have a second transplant.  The whole process had to start again.  The transplant team rechecked the bone marrow register (Anthony Nolan Trust) and approached the best matches.  I believe I had three matches, the first I'd already had, then they approached another who lived in America and they declined to go through the process so they re-approached my original donor in Germany.

Being the obviously amazing man that he is, my German donor agreed to donate again.  The first donation  of marrow he did was just sitting in a chair having blood removed and sorted in a special machine then back in without the bit that was to be used for me.  The second time he donated they opted for the more traditional way of donating marrow cells and that is to have the marrow liquid sucked out of the bone.  I have bone marrow biopsies regularly which involved putting a needle in my back/hip bone and removing the liquid from the marrow in the middle of the bone, then taking a piece of the bone for testing.  It shows how many cells you have etc, much more than a blood test.  My donor had a similar procedure in his back where they took a much larger amount of these cells from the marrow liquid and that is what was flown over to me in London and given as my transplant.

They tried to allow me some time at home before starting the whole process again but every time I was discharged I got an infection again.  I ended up having three Hickman lines before my second transplant as they kept getting infected.  This is not a nice experience, having a plastic tube forced into your chest.  In fact I absolutely hated it and each time felt like a lump of meat on the operating table.  The surgeons were so rough, there was so much blood and I just felt violated...that's the only way I can describe it.  Having said that, it was a necessity.  My veins were no good by this point and couldn't be used and i had a line put in my neck temporarily.

So...then came Transplant number 2!...