Sharing a cancer experience

Having been unwell for most of December, and early January, I made a deliberate plan to not chase any more commitments for the new year. I had cleared my diary, and had completed my work. Although I had few speaking engagements on the horizon, my blogging and social media work, quite quickly fill up the gaps in between my treatment sessions, so there is always plenty to do. I wanted to give myself some time to think about the coming year.

However, my speaking engagements are really what helps my work come alive, and makes my blogging etc feel real. It is an opportunity to hear other peoples experiences, who, through me sharing my story, have felt able to talk about their own. I have been doing presentations for many years now, and the beauty for me is that each one is unique. I talk to health professionals, and patients young and old, also at fund raising and business functions. From every presentation I give, I learn something new.

This week I had the pleasure of sharing my experience, with a large group of interns, coming to work for a UK cancer charity.For many of them, it was their first ever in depth look at the effects of cancer on someones life. Although, it is never safe to assume that even with a young audience, there is no one who has a personal or family experience. That has happened to me several times.

After this particular presentation I had time to think about things, as I went straight to a session of treatment.The audience was very receptive and enthusiastic, and many spoke on Twitter about how they had learnt a lot from it, which is great.However my thoughts turned to the frequency with which I share experience and information about cancer.I now speak or write about it, daily. Not only that, I am in a cancer environment for 5 days every month, having treatment, during which time I am talking to both professionals and patients.

I am aware that I have become 'comfortable' talking about almost any aspect of the disease. However, what struck me this time, was that people may not be so comfortable listening to certain things. What has become 'normal' for me, is far from normal for most people. Obviously, if you attend a presentation where someone is talking about cancer, to a degree you know what you are going to get. Also, if you don't like the content, you won't read a blog. But I was thinking also about my social life.

Maybe people don't want to know some of the content, that I tell them? Most will not be used to hearing some of the detail. My natural way of communicating is to tell people the facts. My thinking behind that was to help people understand what was happening.

Sharing something like a cancer experience, is a very personal thing. Some people don't do it at all, not even with their partners! Others keep things within the 'friend and family network.' Some like me share most things, and more. I happen to feel that talking about these things publicly, will help raise awareness of the issues, and improve things for the next generation, but not everyone would agree. 

Blogging has become one of the most popular ways of sharing experience. Even in the two years I have been writing I have noticed, a vast difference in the quantity, and detail of what people share. It has become much more acceptable to share very intimate details of treatment and emotions. But of course, in this instance you have a choice, whether you follow a particular blogger or not, if you like that open style of communication. 

Face to face work is very different. But in many respects I find it easier. I can generally feel a mood in a room, and by looking at peoples body language as I speak, I am able to tailor the talk to suit, the audience. But one of the biggest hurdles to overcome in a group situation is that many people are still uncomfortable talking in public. Always when a talk gets opened up to questions there is normally a slight hesitancy from the audience.Afterwards though, many people want to talk!

The beauty of the platforms available on social media,is that people can take as much or as little as they require.They can stay anonymous if preferred, or go public if comfortable. They don't have to enter a situation where they feel uncomfortable. It is important, psychologically, to share things, even if it is only with people on the Internet. We never stop learning, and for me, hearing other peoples stories, really helps me to make sense of my own. If I can do the same for others, I will be a happy man! 

Do you find it easy to share your experience? Is it of benefit to hear from others about theirs? How important is the internet, in how you give and receive support? 

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The power of nature!

In the last couple of months the weather has been absolutely crazy in the UK. I don't think I can remember such a prolonged spell of wind and rain, in my life time. I have seen pictures of flooding and damage, that I could never imagine I would ever see, and in recent days, we have been hoping that our house withstands the constant battering we have received from the wind. So many peoples lives are being scarred by these events.

I have heard talk about long term plans, and Governments not spending money, so many different reasons for why we cannot cope with these circumstances. I'm sure you will all have your own ideas. Building on flood plains, dredging rivers, flood defences, the list goes on. I seem to recall we all had different answers when a few years ago, we were affected by blizzards. Not enough salt, services not reacting quickly, no snow ploughs, not enough investment. It seems we can always blame the Government!

However, I ask myself, does man always have the answer to what nature delivers? Sure, we can solve many problems nowadays with our extended knowledge, and technology, but it does seem that if nature really wants to do something, there is very little that man can do about it. Much as we have known for sometime what our weather will do, there is very little we can do to prevent the devastation that will occur.

Like a lot of people recently, I have stood by helplessly, watching the havoc taking place, and apart from a few obvious precautions I could take, there was little I could have done, if my own house had become directly involved in the crisis too. That feeling of helplessness is frightening. It feels like 'control' has been taken from you. It also makes you realise how insignificant we can feel.

During my illness I have experienced, many similar emotions to the ones I have recently.Despite very comforting words from Health Professionals, no one really knows how the disease will behave. We certainly have statistics, to act as a guide, but that is all it really is. Every case is unique, and we all react differently to things. 

There are times when you just have to have faith. Not necessarily religious, but many people do. Confidence, in your medical team, and the treatment they are giving you, and a belief that the best outcome will be achieved. But no matter how many new ways we find to treat cancer, it is a powerful adversary, and we can rarely be entirely confident that we have controlled things for long. 

Nature is not only a powerful enemy but at times a powerful friend. Helping you recover, from illness and giving you strength when you thought there was none. It also seems to have a unique way of teaching us lessons. I am currently writing this piece, in glorious sunshine, but reflecting on the things I have learnt in the last few months.

In the cancer world, we have an incredible amount of man power, and financial resource, going in to deal with it, yet it continues to leave it's trail of devastation. Of course, we have to continue to believe we can find a cure, and treatments that will behave kinder on patients. This is always how man works. We try our hardest to achieve what seems impossible at times. I guess if you don't head for the stars you will never climb a hill. In my own relatively short lifetime I have seen so many things happen, that I would never have thought possible. A testimony to man's persistence!

However, I have come to the conclusion that despite all the meddling by mankind, nature will do what it wants, and we will have very little say in matters. We will always believe we are influencing certain things but I feel that is only a perception, and a far cry from reality. 

I hope that you haven't been affected too badly, by this crazy weather pattern, which has affected many countries across the world. Please feel free to let me know your opinion of our relationship with nature. 

It would be great to connect with you on  Facebook too!







  

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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Dealing with a cancer diagnosis

Last week I wrote about my experience of talking to two people who were newly diagnosed. How I felt that even after so many years, there just was not enough support for people facing cancer treatment. Despite our many years of experience, generally, people are still left to face a traumatic time on their own.What really shocks me about that, is when I use my own personal experience as an example.

My diagnosis involved stage 4 incurable cancer. No one knew if I would live or die. Everything I was facing was a totally new experience, and despite the fact I was 51, it was really frightening! That was only the treatment etc, not even including losing my job, income and all the things associated with that. I was introduced to a specialist nurse, who was lovely, but told me so many times how many patients she looked after, so I gave up even trying to talk to her. I decided, that like most things in my life, the only person who could sort things out was me. 

But I was equipped for this sort of challenge, in a strange sort of way. I have always worked for myself, and have rarely had to rely on other people, so another system that was inadequate was not unusual. However for others, who might expect and require more support than me, I'm sure the entire experience comes as a complete shock. What makes things worse, as far as I am concerned is that my own issues started seven years ago, and in honesty, although, medically many things are improving rapidly, the basics of support are not! 

As I also say frequently, my opinions are based on not only my personal experiences, but also many other people who I am in contact with, either personally or via social media. This week I am highlighting another example of how people can react to a cancer diagnosis. Emily is an incredible young lady who was diagnosed in November 2013 with endometrial (uterine) cancer and colon cancer. 

"Tonight, I broke down. I don’t know what exactly sparked it, but tonight everything just hit me like a ton of bricks. It finally settled in my mind. I have cancer. I am going to have to endure probably the most grueling year of my life, and then who knows what I’ll be like when it’s all over? Will be I able to go back to the same line of work that I intended? I know my job won’t be there when I get back. I had just started. It’s not one of those jobs with real job security anyways. They’re not obligated to save a spot for me until I get back like at some other jobs. I’m not on that level yet. 

When all this is over, what will I be left with? A few less body parts than I started with, the inability to have kids, but hopefully my life. I probably won’t be able to see a lot of my friends for a while. I won’t be able to be as independent as I want to be. I don’t know what freaked me out so much in particular, but I had one of those deep sobs. It hurt — seeing as I just had surgery last week — but it also hurt because I felt like I was in some kind of box that no one around me could get into. Like no one could quite understand exactly what I was crying about. Heck, neither could I. But tonight, I don’t feel strong. Tonight, I feel sick. Tonight, I feel weak. Tonight, I feel scared."

This young lady has the world in front of her, but is now facing her biggest challenge. What can equip her for the experiences that may lie ahead? Being younger, Emily faces many unique challenges, associated with her age, which us older people don't. She will require very specialist, age appropriate support.

The fear which Emily describes graphically above, is just another example of how a lot of people are feeling when faced with a cancer diagnosis. I wanted to share it, as much for people who have been lucky enough not to be in that position, as I feel it sums things up brilliantly.There is support out there, but it is very hard to find. I also appreciate the issues involved, as every experience is unique, and a generic approach is no longer appropriate. But in many cases, the psychological and emotional fallout from cancer, can have a more negative effect than the cancer itself. 

My personal view is that a much earlier support intervention, where required, will improve things for people. I'm sure that is not the complete answer, but I do know that we cannot let things continue as they are. Unfortunately there will be very many more people entering the process, and they will need some help. 

What was your experience, on diagnosis? How were you feeling, and what help did you find? Please feel free to share your experience with the readers. You can also join us on Facebook here

If you would like to read more about Emily, you will find her blog here