One year on

It will be exactly a year on Saturday since I had my autologous stem cell transplant (called autologous because my own stem cells were used). The day they are given back to you is called Day Zero, the days before minus 1 minus two etc. On -1 day, I had enough of a chemotherapy drug called Melphalan to kill me in an isolation room at the Manchester Royal Infirmary Ward 44 but on day zero  (1st September 2011) I was rescued by having my own stem cells put back which had previously been collected from my blood stream and frozen.  In my case I just had one bag back as there was a high concentration of stem cells in my collection and had harvested 4 bags in total, the other 3 bags are still in a freezer stored at some ridiculous number below zero. It took about 20 minutes by infusion. An anti hystamine is given prior to the infusion to minimise any reaction. Its no big deal on a physical level and I didnt have any reaction other than to emit a smell of sweetcorn which is very common. I couldnt smell it to start with but the nurse could. Once administered the baby stem cells needed to develop to form my new immune system as Melphalan was in the process of destroying my old one.
I waited impatiently in my isolation room for my neutrophil count to drop to zero which meant I had no immunity and takes about a week to kick in. I was allowed home over the first weekend as I was not neutropenic. Then as I got down to a lower neutrophil count, the side effects of the chemotherapy such as mouth sores, sickness and diarrhoea, nausea, loss of appetite and extreme fatigue develop and continue for about a week. My recollection of this phase is somewhat of a blur but I know that I got off lightly compared to some people with the side effects. My main issue was fatigue and lack of concentration. I had taken lots of books, audio books, DVDs, IPod and my laptop in with me but found it difficult to concentrate on anything for longer than 15 to 20 minutes. The TV in the room didnt work very well so I couldnt distract myself with that but the one thing that I did enjoy was the complete series of the danish version of the Killing which was gripping!
What stem cells look like (not mine)


I gradually started to feel less fatigued and more bored. My appetite returned and unusually for someone going through this process I wanted to eat but not what was the standard hospital fare. I started ordering off the Halal menu as the food was fresher and more interesting but perhaps a bit spicy for my delicate stomach. Then I discovered the West Indian menu and the Kosher menu but on the one Sunday I was there I had the roast dinner.  I couldnt eat it, it was so disgusting! Soggy and tasteless.

On day 14 I was allowed to go home as my neutrophil count had gone upto 3.2 so I was considered sufficiently recovered enough to be discharged home but had to be extremely careful with food hygiene and avoiding risk of infection for the first few weeks. I was tired and depressed, taking to the bed for most of the afternoon and was very short of breath hardly able to climb the stairs. However gradually everything improved. After my bone marrow biopsy around 3 months post transplant I was told I had a very good partial response as the percentage of abnormal cells in my bone marrow was less than 5% and my light chains were in normal range. I dont really understand why I didnt have a complete response but it was something to do with there being some paraprotein although too negligible too measure.

I had a new immune system.  When I went to see my acupuncturist, Amy Lai, she said I had crossed over to the other side and welcomed me. A beautiful canadian/indian actress called Lisa Ray claims to feel reborn since her stem cell transplant. I think if I looked like her I would feel reborn too!

So what do I feel?

I do feel like I am living a normal life again and like Lisa Ray (although she declined to take maintenance drugs, I didnt have the choice) I am drug free because the NHS wont pay for me to take effective maintenance drugs which have been proven to double the length of remission. Oh well.

Its scary how I have returned to a normal life on the surface. I am back at work, going on holiday, exercising, socialising, planning things (upto about 6 months ahead).  I can almost pretend that I  wasnt diagnosed with an incurable life limiting illness. Last year seems unreal and I dont pass a day without my mind making a connection with some aspect of my illness or recalling some details or incident from last year. Between December 2010 and December 2011 I spent 28 days staying in hospital altogether (kidney failure, diarrhoea and stem cell transplant). Not to mention the numerous hours put in at the haematology day unit with appointments and treatments and all the waiting in between. I suppose it is not surprising that I cant just put it behind me. Now its once a month for Zometa (the bone strengthener) and a three month clinic appointment. I sometimes strangely miss the hospital visits and the care and attention I had whilst there.

So I am going to be celebrating on Saturday, am I one year old in my new life so it is my first birthday or is it an anniversary? Or both!! Whatever it is I want to celebrate. My new immune system is one year old  but is still in its infancy as evidenced by the countless viral infections I have suffered but hopefully like me is getting stronger although my immune system will always be compromised.

I still have to live with the uncertainty of when the Myeloma will return. The standard advice is that it extends remission by 12 to 18 months but I dont know how long the remission would have been from the treatment alone so that doesnt help. There are people I know of who have been in remission for over 10 years and continuing but then there are people who dont even get 12 months before they relapse. The good response I had to the transplant doesnt mean that my remission will last longer. The way I feel now is that I cant believe I ever had Myeloma and I find it difficult to accept that it will come back because I am in good health. I almost look at last year as a gap year, time out to have cancer instead of travelling the world and having a life changing experience but although I didnt travel the world I did have a life changing experience. My life changed irrevocably last year and will never be the same again and now I am trying to inhabit a new normality, a way of being that means that I still try and make the most of life and not take anything for granted but daring to think a little further ahead and make plans for the future.