Blood cancer and stem cell transplants

Although I had decided this weeks blog subject, very early on, I am always open to flexibility, if  something important comes up. It did, but ironically it included the subject I had decided to write about! Via Twitter, I received a link, to another blog, written by an incredible young lady, who had experienced personally some things, which confirmed the subject matter of today's post. 

This week I wanted to focus on how lives can be affected as much by the treatment they receive, as the cancer itself. I have spent the last 4 years, having treatment for the side effects of the original treatment I had, to keep my cancer at bay. During this time I have met, and continue to meet, people affected similarly to me. My body, frequently wants to reject, the stem cells, that have been given to protect me, causing many different issues at any time. There is rarely a warning, when this might happen.(Graft versus host disease,)

Recently I have met several people, who through treatment, are unable to do their work. Careers, which they have trained for when they were young, and spent their lives developing their skills, enabling them to provide for their families.I have met a builder, who is now so weak, he can't even pick up a hammer, and a writer who has the disease around his eyes. He can't see without the continual use of eye drops. Both these guys, like me, are into their 50s now, with no end to the treatment in sight. They want to provide for their family, and do the normal husband/father things.

Below is an excerpt from this wonderful blog by Kathryn, and describes how GvHD has affected her

In August 2007, when I was sixteen years old, I was diagnosed with Acute Myeloid Leukaemia M7 with monosomy-7. I started chemotherapy on GCSE results day. I had one course of one regime, then a course of a harsher one, then in December 2007 I had some pre-conditioning chemotherapy and on the 19th, I had a stem cell transplant from my big sister. I recovered fantastically well and went home on New Year’s Day, celebrating just how easy this cancer business had all been.

In April 2008, I noticed some lumps in my face. I had one biopsied, and it turned out to be a malignant tumour. A bone marrow aspirate and trephine confirmed that my marrow was indeed full of leukaemia again and I was given a 1 in 5 chance of survival. My only option was another stem cell transplant from an unrelated donor – using my sister wasn’t an option this time as she had been too good a match, so I got no Graft vs. Host Disease which would have caused Graft vs. Leukaemia and killed any cells that were lurking. This time, I had much more toxic chemotherapy, plus a week of radiotherapy, and on July 31st 2008, I had my second stem cell transplant from a young German fellow. I got GvHD in my skin and we were delighted. Until it got worse and it became incredibly itchy and painful. I also got it in my gut, but it was all treated with IV steroids and after about six weeks, I went home.

I was doing very well, until September 2008 when I got GvHD in my eyes, which meant I lived in the dark for a month and in tremendous pain, until I had eye drops made from my own stem cells from my blood, and they cleared it right up. (Incidentally, this is no longer given automatically and you have to apply for funding to get them, leaving people to develop scarring on their eyelids while they wait. Well done, government.) Then on October 31st 2008, I spiked a temperature, we went to A&E, and I didn’t get discharged until June 11th 2009. I had GvHD of the gut pretty badly, and of the liver in the worst way. In the fatal way. I was unable to eat because my stomach had no enzymes to digest anything, and I was turning more yellow-green by the day. 

At the beginning of December, my bile ducts had shrivelled away to nothing, I was being poisoned via my own bloodstream, and I was put on the list for a new liver. I got it on the 21st. The doctors had told my parents it was unlikely I would see Christmas. The liver came from an O-neg donor, and I was A-pos. This is not routine; O-neg can only receive from O-neg, so they only give them to other people when they’re nearly dead. At this point, the haematology doctors were still looking after me too, and the discovery was made that I’d had a third stem cell transplant by accident. The stem cells from the liver had gone to my bone marrow, kicked out the German, and completely changed my DNA. I’m the only person in the world all this has ever happened to.

Being in contact with Kathryn this week has given me the opportunity to talk about some of the issues involving blood cancers and stem cell transplants. Like most things involving cancer, the results are unique to each person, and we rarely know what to expect. Of course we are all grateful for the extended life we may receive, but that can be very far from the end of the story! 

For more information about Graft versus host disease click here

My grateful thanks to Kathryn, for allowing me to share her work. If you would like to read more please click here

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Just a piece in the jigsaw of life

My treatment has started again in earnest this week. Unfortunately, my efforts to regain some of my life have not been successful, and after trying my treatment monthly, my graft v host disease is beginning to get a grip on my body again, and I must resume a more aggressive regime of fortnightly. I did start a self centred moan to my Consultant, who smiled. She said that I will HAVE to slow down now, and that the staff would be pleased to have my company more often!

There are certainly many down sides of being in the hospital so frequently, and the treatment is tiring, but unlike chemo, it is not toxic. I am still plugged into a machine for hours but am able to focus on my thoughts. So I try and take the positives where I can. It certainly does force me to rest, and now instead of constantly using my smart phone, I listen to music or take some thinking time. It is the thinking time that prompted this piece.

I have again, become a very regular part of the nurses lives. Alongside my personal life, my 'cancer life' is intertwined with so many people in so many organisations, both physical ,and on social media. There are very many threads, taking me in so many different directions. Yet it feels that in some crazy way, everything joins up eventually, like a very large circle.

 

My work takes me into some incredible peoples lives. Their stories are unique, but they become part of my life, and me theirs. I liken each life story to a jigsaw, we all have our own, in which we are a piece, but we also join up with other jigsaws, to form a larger one. As our connections grow, the picture starts enlarging, and changing.

Several weeks ago I was doing some work, and my experience was able to aid the process. The people involved were wonderful, and we have been able to help each other since. We are now very much part of each others lives, and stories. Now I am not only a piece in someone else's puzzle but my own picture is changing again.

When there are pieces missing from a jigsaw, you can never see the complete picture in all it's glory. If you consider certain groups that you know, family, friends, social, or work colleagues, when certain people are missing, it just isn't the same.

Time is a big issue for all of us, and as we get older, it becomes more difficult to find room in your life for new acquaintances. But I am finding that my list is still rapidly growing! Obviously we only have a maximum capacity, for relationship building. But as we accelerate through life, is the way that we deal with people changing? Social media means that we can maintain relationships in the way that we want. Not every person deserving of our valuable time in terms of personal attention!

My life has always revolved around meeting people. Some stay in the memory, and relationships form. Others come ,and quickly go. At different times, people come to the fore and then drop back again, as priorities change. At times the puzzle gets larger and other times it gets smaller.

 

I am always amazed that how through my illness, the relationships I am forming, feel very strong, and long lasting. Maybe it is just the phase that I am going through, but things feel very different now. Whenever I meet someone, I never feel that there is a hidden agenda. I still have my 'business awareness' which makes me cautious of peoples motives, but we only try to help each other. Maybe I am now a piece in an entirely different puzzle!

It seems that my life is swinging around so wildly, that I don't even know anymore, what the picture looks like. I feel that I am a 'universal piece' that can fit anywhere. Sometimes a corner, or whatever is required at the time. My life certainly feels like one big puzzle right now!

Are there times that you feel similarly? Please feel free to share your thoughts below