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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Young people deserve better cancer support!

My favourite area of work is with young people, and there are two main reasons for this. The first is that I just love the enthusiasm and energy from this group, but secondly, I am genuinely shocked, at how little support is available, and I want to make some noise about this!

By chance, I have spent the last week, involved with some young people. I have attended a presentation by Shine Cancer Support and was privileged to meet several, vociferous people. I also met many young people raising money for Macmillan Cancer Support #CoffeeMorning. Since then I have been in regular contact, with others that have found me through Twitter.

Experience shows me that, services are ok, if you are very young, teenage, or 'middle age' but the group of 20s 30s,and 40s is largely forgotten. There are specialist units and charities that can help support you in your earlier years, but what happens when you move from being a teenager, to becoming a young adult? It seems that you start falling between the large cracks in cancer support.

I was 50, and very worldly wise when I was diagnosed, but I struggled to find the appropriate support I needed. So I am not at all shocked to hear that young people, who are just starting to find their place in the world, can't find what they need to help them, when facing a cancer diagnosis. My opinion is that in the past, this group, has not really had a voice, but with the now vast, use of social media in this age group, people are beginning to join up, and fight this inequality.

Many of the issues that this group face, affect them so differently to others. Fertility, relationships, education, and living with uncertainty, are just some of those. These decisions, are life changing, and difficult to make if you are in perfect health. Imagine the pressures you may face when dealing with cancer too.

During one of my many recent conversations, dating was being discussed by some young ladies. They were all talking about when they should tell any new partner about their cancer! At the start of the relationship, over a dinner, of just before hopping into bed? This was particularly poignant for anyone who has had surgery. We were all laughing, as we imagined some very strange scenarios. But the point was well made, and so important.

The ease with which these issues are discussed peer to peer is very refreshing, but the biggest problem I see is the difficulty in communication between this group and the health profession. Generally, it is like there are two different languages being spoken, and both groups struggle to understand each other at times.

Unfortunately, I cannot really think of the answer to this issue, even if there was an unlimited supply of money. But what I am really aware of, is the difference that communicating with someone, who has faced/is facing similar to you, can make. There are national charities that facilitate forums etc, but I am not convinced that this is what is needed. Unfortunately, although these are very safe areas, on the whole they don't truly represent what is happening in real life. There are many unofficial communities forming which are much more real, but still safe.

Small, local, and more welcoming support, seems to be what is required, but the way that marketing is done these days means that local organisations are constantly struggling for funding. What I have also seen is that, particularly with this group, the people running the support, need to have a greater connection to the people receiving it. I constantly see people in charge of large budgets that have no idea, of the issues that the people they are trying to help, are facing, they are just too disconnected! A common issue across most support agencies I feel.

Enough from me! I have attached a part of a blog from an amazing young lady. Sam has written a couple of guest posts for me, which have had tremendous impact. She writes in that very refreshing and blunt style, that I was referring to earlier. This piece is an example of the issues that these young people face. She refers to her experience with radiotherapy.


"I can't look at this mask any more because I am now coping with my cancer more than I did when I was being treated. I now have the time to think about everything that happened. And the more I think about it the harder it has become. I have nightmares, panic attacks and anxiety pains when it comes to thinking about cancer, just last week I convinced myself I had bone cancer and this week I was convinced I had a brain tumour, I know I don't but thinking about these things gives me pain which makes it worse! And theres no not thinking about it. Cancer has taken over my life. I have become my cancer. Oh bollocks!

I've thought about counseling but that's not something I want to do again as it has only helped 1/3 times for me. 
I've tried keeping it to myself but it only got worse.
I have my follow up next week and I'm hoping there is something or someone who can help me!

I look strong and healthy and like it never happened to me but my thoughts and emotions are only just deciding to catch up and look for healing help.

I honestly don't know whats worse, this torture of my thoughts going crazy or the constipation that came with chemo (I still don't poo the same!)

So please, someone tell me how to get rid of Samantha
And if anyone has any advice that doesn't come in a leaflet, that would be fab. I know we are ALL different in our cancer but there has to be someone out there who's had all this too!"

I definitely couldn't have put it any better myself Sam, and many thanks for letting me use this incredible piece. To hear more from Sam you can follow her on Twitter @sam_lightyear
or keep up to date via her blog

Are we prepared for increasing survivorship?

This question is actually not as crazy as it sounds. In the last few weeks, I have had numerous conversations with a very good cross section of people about the lack of support for people affected by cancer, once they step outside the hospital environment. Despite, the length of time of my own personal experience, I am still shocked, how little support is available.

During my conversations with professionals, the biggest issue that I find is a demarcation of responsibility. My doctors, are doing their best to keep me alive. They care for all of my physical issues, either as an inpatient or by giving me drugs which I can take at home. Once I am outside of that scenario, it feels that I am on my own. My family and friends have been with me, for every step of my journey, but as I have said in previous posts, "I am the only one walking in my shoes!"

I am the one feeling the pain, and mental strain, of trying to stay 'normal.' Attempting to live a life, whilst trying to stay alive. Fitting in good things, around treatment and hospital appointments. Sitting at home, whilst my friends continue with their careers, and I do my best to be useful, as my body becomes weaker. Thankfully, the Internet was invented in my era, and I have been able to use my mind much more, and find different ways to use my skills, and occupy my time.

 

 

 

Talking to numerous of my fellow patients, I have yet to find many, that have been able to continue their careers where they left off, prior to their diagnosis. Many have had to go part time or are even unable to continue working, due to physical issues, or the amount of time spent at hospital. Several have been made redundant, and despite discrimination laws, are unable to find another job, once the word cancer appears! If you are not careful, a feeling of hopelessness can affect you. If you are unable to work, this can then create financial issues, which can then put a strain on domestic circumstances.

In the above couple of paragraphs, I have talked about just some of the problems that can be encountered by someone dealing with a cancer diagnosis. There are many more! One of the most common forms of support discussed as an option,is counselling. I have two observations on that. Firstly, there are very few counsellors around and definitely not enough for everyone affected by cancer. Secondly, there are really very few people that actually require those services. Maybe if you get to the stage of being clinically depressed, but most people are frustrated with what is happening and might just require more practical forms of support.

There are numerous charities around, that are great for giving information, regarding your disease, treatment, financial issues etc, and they even facilitate forums where you can find like minded people, with similar issues. However, these facilities are rarely 'joined up' and tend to be a 'one size fits all.'

The biggest problem, that we face, is that cancer affects us differently. Our circumstances are all unique, so there is not one single solution. To find the answers to the questions we pose, will take a lot of hard work, talking to many different people across many different organisations. If we are honest, most of us don't have the energy or persistence for that.

 

Using my now, very large back catalogue of experience, my opinion is that we need to approach the problems of cancer, in a much more 'holistic' way. After all, our physical health is affected by our mental health, and if we are anxious about issues outside the hospital, that is going to affect our general well being. But where does the line of responsibility get drawn? Is it right to spend time with your clinician talking about your inability to find work etc? How do we drawer all of the strands of our care together?

Apparently, the survivorship issues that we are facing now, are because we have become more successful at dealing with cancer. The drugs and treatment regimes are more effective, and we are living longer because of that. However, this is just the first step. We now have to look at the quality of life that we have, and how to deal with the psychological and emotional effects of our experience.

How are you dealing with your survivorship? Do you feel that there is enough support around? How would you solve this issue?