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

You can also join us on Facebook

     

My belief drives me on.

I had already decided a few days ago, what I was going to write about this week, but just before I started writing, I was told of the death of my friend Rory Morrison, who was a broadcaster on BBC Radio 4. Like a lot of people in my life now, cancer had brought us together.

We first met at an awards evening for The Lymphoma Association. I asked if I could have a picture taken for my blog, and we then started talking. We had so much in common, including, a rare aggressive lymphoma. I knew that Rory was facing some of the treatment that I had already encountered, including a stem-cell transplant and high dose chemo. We decided to stay in touch, and via social media, I shared numerous stages of treatment with Rory.

 

After his transplant Rory wanted to celebrate, and he recently bought a new car, and managed to get tickets for himself and his wife, to go and see the Wimbledon Men's Tennis Final. He wanted a goal, something to look forward to as he recovered. He believed he would be better in time. It was his target and focus. Unfortunately he won't be driving his car or watching tennis at Wimbledon, and our lives will be much poorer for his loss.

The above example is very similar to my own. Despite, what logic, doctors, experience and everyone else tells me, I have to believe that things will eventually improve, otherwise I would not want to get up in the morning! After 6 years of unrelenting health issues and treatment I still see a time when I will be back to normal. Maybe it is a form of 'psychological block,' where reality seems like a worse option, and I refuse to see it?

My self belief started when I was at school. I was told I would do nothing with my life, which of course was really the best thing I heard from my teachers. Forget all the rubbish they had taught me, that I never ever used again, they gave me determination! This served me well in my business and personal life, and created a fantastic platform, to ease my way into retirement.

Then along came, cancer. The most daunting challenge I will ever face, both physically and emotionally. Yet I still have that belief.Perhaps it comes, from many years of life being kind to me? I have seen some extremely dark times. Days where I never thought I would see tomorrow. My clinicians got me through those, but there are still days when the darkness returns.

Recently we have lost Sir Henry Cecil (horse trainer), Iain Banks (author) and now Rory Morrison (broadcaster).In the same period, I have also lost many #Twitter friends, all to cancer. These are constant reminders of my own fragility. When I go to hospital, I am aware,after talking to other patients, about the tightrope we are walking. We all share experiences, and are no longer surprised when one of our 'regulars' passes away.

 

Despite all of this, I am still managing to do some incredible things, and raise awareness of the massive psychological and emotional issues of cancer, both through my face to face, and social media work.My diary keeps getting filled with lovely opportunities, despite my wife's hesitation!

Maybe she is right? Perhaps I should slow down my workload, and just get on with whatever life I have left.I know my doctors would see the sense in that. In fact most people would, but I am not really good at taking advice, as those of you who know me can testify. I think my fear is that if I have no obvious focal points in my life, I would stop believing. Instead of pushing forward, I would start to slip backwards.
 
Maybe it is the peripheral challenges that take my mind away from my biggest foe?

I would like to dedicate this post to Nikki, Honor and Reuben.

Life after cancer, for a young person. (Samantha)

One of the biggest things that I have learned, since I was diagnosed, is that outside your circle of family and friends, it is extremely difficult to find emotional or practical support to enable you to start living again.Once you are diagnosed, you have a new 'life companion.' If you are lucky enough to get into remission, it is very difficult to feel that you have completely broken your association with the disease.

I have been talking and blogging about these issues, as I feel that they are rarely mentioned to patients.Cancer has totally turned my life upside down, and I was a very competent and confident person, before this process started. It now feels that I have been thrown into a pool without being taught how to swim.

Yes, everyone has sympathy with my situation, if it was a currency I would be very wealthy! But without the support of family and friends, I really don't know where I would be. Once your health becomes unreliable it is very difficult to live anything approaching a normal life.For example, holding down a demanding job. Finding a job that suits your new circumstances or even gaining employment at all.

I was interested to read an article in The Telegraph that is now talking about these issues, and how our N.H.S needs to change. Apparently there are 1.8m people living with cancer in the UK but only 25% of those felt they had adequate support.

Research also found that cancer survivors are 37 per cent more likely to be unemployed than those who have not had the disease.

Under the new plans, those recovering from the disease would also be given access to information regarding employment rights and benefit entitlements.
Ciaran Devane, Chief Executive of charity Macmillan Cancer Support said: “We need to change the way we respond to people going through cancer: all of a sudden the treatments stop, and too often people are left feeling they are on their own, and fearful about the problems they are left with.”

He said cancer survivors, especially men often found it difficult to discuss the impact of the disease on relationships and intimacy, but were often relieved if the opportunity was offered to them.

At last it seems like our society is beginning to understand the issues.In many respects, I am lucky, I am in the autumn of my life, not seeking a career, my boys are independent, and I am able to get by financially. But how would I see things,if all of that was in front of me?

I featured Samantha's story of diagnosis and treatment, a few months back. The issues for young adults are totally different.We need more awareness of the issues that our children face, and it was great to hear in her own words how she felt. Now, there are different issues facing Sam!

"What next? – 20 years old and facing the world after cancer.

So you’re in your late teens early twenties and you’ve got a cancer diagnosis. You try every day to live as normally as possible, you want to go out with your friends and party, you want to fall endlessly in love with someone who acts like the sun shines out your ass, you want to find a job or go to university?

We all had a plan before diagnosis. There’s no denying it! I’ll admit I was lost but deep down I knew there was something out there for me, the navy, a part time job, going back to college, training, retraining. I didn’t know I had cancer but things weren’t going my way anyway and I was feeling down in the dumps and acting like my world was crashing down around me just because I couldn’t get a job. Then BAM Hodgkin’s Lymphoma, the lumpy icing on the cake.

Since that dark and damp summer last year, I’ve battled with cancer and rather than feeling like there was a fog around my life constantly I sometimes felt bright and good, especially when I was writing my blog. I’ve had setbacks, I thought after chemo I’d be done, I ran a blog that I closed down due to being accused of faking cancer (ludicrous I know! But unfortunately people do actually do that), I’ve lost friends and fallen out with family on the odd occasion. But here I am nearing the end of my journey and ready to get back out there and face the world! …

Or am I?

I have my college degree in sport, few credible GCSE’s and never held a job past the trial period due to my health.

So what now?

Currently I am on benefits which I’m not entirely proud of. I’m thankful for it but I don’t want to live off the hard working peoples taxes forever.  So here we think about where can I find a career? What do I want to do? My naval dreams dashed by diagnosis and a lack of experience in anything. I could easily volunteer and gain valuable experience but here again arises the problem of income, I could retrain or go back to college but again where’s my income? How will I know that I will enjoy what I’m training to do until I’ve forked out tuition fees for it? (And this isn’t just a problem for cancer patients it seems) Who knows for definite what career they want before they end up trapped or with a degree and a debt they no longer want?

I have considered that I want and maybe need a quiet office job with a steady wage once I’m the right side of remission. My grammar isn’t top notch but I like being behind a keyboard and I like writing. I’ve considered working for charities in any payable positions they may have, because charity has been one of my main focuses during treatment. I’ve considered that I’m a fidget and I don’t like to sit down for hours on end so maybe a desk isn’t ideal.

Luckily for me, I don’t have to decide that today but it’s something I think about every day. I’m 19, it’s difficult for anyone to get a job without experience but how about an individual that has health issues and will need time off? I think CLIC Sargent and the social worker they’ve provided me with (who is a miracle worker sometimes) will help me get somewhere. But what if I’m holding myself back? What if experience is holding me back? What if I won the lottery!? Everyone probably poses these questions to themselves. As a young cancer survivor my question is ‘ What’s the next step after cancer?"

What problems have you faced whilst trying to get your life back on track, after receiving a cancer diagnosis? Old or young, we all face different issues. I would be happy to feature your story if you would like to share. Please just leave me a comment below or catch me @christheeagle1 on Twitter.








 

"How are you?"

"How are you?" This is possibly the most common greeting that we use today. In fact we probably use it so frequently, that we have almost forgotten what it actually means. It is a question, not a statement and therefore prompts an answer, which may then start a conversation! In truth, that is not what we necessarily want to do. What we are actually doing is acknowledging that person.

"I'm fine" is generally the answer which comes back, and for most of us that is probably a relief, as we will not then get involved in a heavy conversation.We all have issues of course, in most instances, not really of interest to anyone else, and if they were, possibly far too complex to be discussing in a brief encounter.

However, when I am involved in a cancer environment, the question is asked slightly differently, with the expectation of a more complex response.In my five years of personal experience, I think that I have encountered, most situations, good and bad, yet still, things arise that shock me. This was what happened a few days ago.

I was at a social function, where I saw two people who I hadn't seen for some time. Both looked extremely well, and it was great to see them. So when I greeted them with "How are you?" I also expected the reply of "I'm fine". However the response in both instances was far from fine! I was shocked. In both cases their cancers had returned, more aggressively. They were both having treatment. I was not prepared for those answers, as they looked so well, but I considered it a compliment, that they felt they could share their story with me.

In both instances, we talked for some time, and they appeared grateful, to be able to talk to someone who understood. Would they have responded in this way if they weren't aware of my own situation? I don't think so. To most people they would be saying that they were fine.That is the most convenient response for both parties.

Most people who ask me how I am, ask for genuine reasons, and have a concern for my health. But I find that I have to tailor my response, individually.My issues are very complex, and I struggle at times to understand them, so how can I expect anyone else to? Some people have a better grasp on what is going on, and others just want to touch the surface. In truth, I still want to say everything is fine, and move on! It just seems easier.

A friend of mine, Allan Smith, a fellow Lymphoma patient, wrote the following, which I feel sums up brilliantly, "How are you?"

 

"How are you?" everyone asks, "I'm fine"

"You are looking well" everyone says, "Yes, I'm fine"

"How's it all going?" some people say, "Oh, I'm fine"

"You must be strong" people say, "Oh I'm fine"

The simplest of phrases that won't let you know, all the pain and the fears that I don't want to show.

I can't tell you I cry when I sit on my own, and that my mind is in turmoil, I don't want you to know.

My body's in pain and it just won't subside, and I feel like I have left my life far behind

If I told you these things, how could you see, your world is so far from my reality.

It's falling to pieces inside of my head, so I tell you "I'm fine" as this puts it to bed.

You smile as I say it and you look so relaxed, so I'll say it each time when you venture to ask, "I'm fine"

 

 What response do you hope for when you ask "How are you?"