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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The best Christmas present ever!

Well, it is nearly upon us again. I really don't know where the time goes. Christmas, the season of good will to all men! Plenty of good stuff happening. Presents, parties, eating and drinking, and generally having fun. Not forgetting of course that it is also a religious holiday. But one thing that is for certain is that cancer does not take any time off. Celebration time or not, it continues on it's destructive path.

As I have mentioned briefly, the festive season, is a particularly difficult time for most people affected by cancer.Maybe they have lost a loved one, just received some bad news, or possibly they are going through treatment. Quite difficult to celebrate, when things like that are 
happening in your life. 

I will be experiencing at first hand, the pressure that patients can feel over the festive season. The difficulty of doctors and staff being away, ensuring that you have enough medication to see you through the period. Worrying about what will happen if you do get sick, over this period. The hospital with far less staff than normal, if you do.
However, this time of the year is a particularly poignant time  for me.
Six years ago, I was in an isolation unit, undergoing a stem- cell transplant.

The staff were unsure about starting it before Christmas, but I was in such poor condition that in the end there was no choice. My immune system was slowly poisoned over 10 days until it was like that of a new born child, then I was given my life saving transplant. A little bag of stem- cells from my anonymous donor was sent across London on a motorbike. All organised by the Anthony Nolan Charity.

The gift of life for Christmas, how meaningful is that? My goodness, how lucky am I? In honesty I am feeling quite emotional whilst writing this piece. Even with this transplant, no one was sure what extra life I would be given, if any. There was no guarantee that I would even survive the transplant. Yet here I am, 6 years later writing this.

I would like to share some of the more surreal moments of my festive season in 2007. Firstly, even though I was under heavy sedation, the Sister, (who was a very attractive young lady,) asked me what I wanted for Christmas. My quick reply, was her, in a tiny Santa outfit! ( Sorry ladies!) She played along and came in on Christmas day with her outfit on!
Secondly, at just past midnight on Christmas Eve, all the patients got a little present from the hospital. What a lovely thought! Finally, on Christmas day, my family and friends all came in to visit me. It certainly was a unique way of celebrating.

So now, I am like the Queen and have two birthdays, my official one and my new life one. So although my bodywork is 57, my system is only 6.
Christmas is a family time, and although we all lead such busy lives, it is an opportunity, for people to spend some quality time with each other. For me, it is always a period of reflection.
I have so much to be thankful for, and I can celebrate that, amongst loved ones and friends. 

Since my illness I have had two grandchildren, and my boys are progressing in their lives. My spare time is taken up by doing lots of exciting things I never imagined I would be doing.
It has taken me a long time to realise, but we are not really in charge of our lives at all! Things happen frequently that change our lives but are totally out of our control. My choices are very restricted, but as I have mentioned in a previous post, things just happen! I could never have imagined seeing 6 Christmas’s after being diagnosed with a stage 4 incurable Lymphoma.
So, as the festive time is upon us, and I watch people celebrating, who knows what is really going on in their lives? Is it just an opportunity to escape from some of our everyday issues? 

Let them enjoy themselves!  In recent years, there have been more serious moments, and less, lighter ones. My baggage is staying outside this Christmas,and in the New Year I will collect it again. I can't forget who owns it, and I don’t think anyone else will want it, so I know it will be still there. But a few days with family and friends will make it feel lighter, when we are reacquainted.
Whilst we are all celebrating the best way we can, the good work continues. Some of my medical team will be working over the holiday, and will be there if they are needed.I would like to thank them and their families for the sacrifices that they continue to make on our behalf. Also my thoughts are always with my fellow patients who are going through treatment with me.

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Celebrating life and sharing the legacy

The last few weeks have been particularly tough for me mentally. After more than 6 years on my 'bumpy journey,' I have seen so many heart breaking situations, many personal, but plenty from friends and colleagues. I have often thought that I have experienced so much in the cancer environment, that there surely can't be anything left that can shock me and pull on my heart strings. But there always is!!

Ironically, my personal health has been the steadiest it has been for some time. The good weather has finally arrived, and the constant threat of colds, flu and chest infections, has subsided for the time being. My maintenance treatment is keeping me mobile, and I am slowly peeping back into the real world again, although with caution, I might add!

Due to my commercial background, I consider myself to be in the 'cancer business.' It also feels like a business, because it is what I spend a lot of time on. As with any business, there are certain things that will always be part of your work. Unfortunately, in this environment, death is very much a part of what we do. Nobody wants that, but it is a fact. Given that this is the case, we must expect to deal with it.

How we deal with things when someone 'passes,' is unique. We will all have had different relationships with that person. Some of us will be closer than others, family and friends, then colleagues etc. There are no rules how we say goodbye, we all do it in our own way. Interestingly, now days, most ceremonies, have a religious basis, but things are even changing here. People are starting to personalise things, to reflect the wishes of the individual.

 

 

 

Yesterday, I was celebrating the life of an incredible young lady. I was fortunate to be a friend and colleague, and my personal experience of a stem-cell transplant was helping her through her own set of unique circumstances. In her young life she touched so many people, with her boundless energy, warmth, and enthusiasm. Even though she was going through her own personal trauma, she would be campaigning or fund raising for cancer charities.

In reality, she only lived, half an average life, but the things that she managed to achieve in such a short time, were probably more than most of us could manage in a lifetime. Her impact cut across generations, and there was such a mixed community to celebrate her life together. We were all recalling our favourite moments, of which there were many.

But this is not where the story ends,nor should it. Her legacy will live on! She has done so much campaigning in the cancer field, that you won't have to look too far, to find a video or a magazine article written or presented by her. The impact she had on others was incredible. She certainly helped improve lives, whilst she was able to, and I'm sure that so many new lives will be positively changed in the future, by her work in the past.

I guess that when most of us think about the word legacy, it involves finance. For example, what we might leave for our children when we die. Since my life has been affected by cancer, my thoughts turned to my own legacy. I have been extremely lucky and have managed a few extra years beyond expectation. This has allowed me to put certain things in place which can hopefully continue, beyond my own life time.I am also trying to play my own small part in improving the lives of people affected by cancer in the future.

I am celebrating the lives of my friends who have died recently. They have had a massive impact in my own life and work, and will continue to. I know that their legacy will live on long into the future, and that their families are very proud of what they were able to do. I am so grateful, to have been a small part of their life too.

This post is dedicated to Bengu Shail, and her family. Thank you for being my friend, and for the legacy you have left us. A brilliant example of Bengu in action can be seen in this video please take a few moments to check it out.

"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?"