My personal cancer experience has continued apace for more than 6 years. For good or bad, we have managed to keep things going. I say we, because, there are very many people involved in that process, not least of all my medical team, who have kept me alive with their skill, and determination, and no small amount of treatment.
A lot of positive things have happened, regarding blood cancer, since I started.My disease is a rare Lymphoma, (Mantle Cell.) It is aggressive, and generally considered incurable. Survival rates are low, so prognosis is mostly poor. I was given the most appropriate treatment at the time, followed by an unrelated stem cell transplant. If that wasn't successful, my options were limited. However, it seems that things are improving quickly, and it now appears there are new drugs available, which may do good things, if and when I relapse.
Over the years, I know that I have been extremely lucky with my treatment. In reality, I have had more luck, than one man deserves. Although I have nearly lost my life on more than one occasion, my clinicians have always been able to find a solution, to my condition, and I have been allowed the drugs, to keep me alive. Although, recently I was told, by one of my team, " we don't always have a magic bullet," but I always believed they did. Until yesterday!
Due to some severe treatment I had, several years ago, I lost my taste and smell. Earth shattering for me at the time, but like most things in life, you learn to live with it. Along with all the other things that have slowly been taken from me, I have struggled at times. However my team felt that maybe there was something that could be done, and referred me to a senior E.N.T specialist. That appointment was yesterday.
It was interesting to see a new clinician, as he didn't know me or my case, only what he read from my notes. Firstly, he congratulated me on still being alive, to which I smiled. He then asked me what my problem was, and gave me a very thorough examination. After a sharp intake of breath he said, my taste and smell were gone forever. Yet more casualties of my treatment. He explained that in certain aspects of my treatment, science had been able to keep up with nature but in this instance it hadn't! "Sorry Mr Lewis, there is nothing we can do." That seemed very final, and bought my entire medical situation into perspective. Simply, I am lucky to be alive.
If I take the positives from my story, I am lucky to be around at a time when medical advances seem to be happening in blood cancers, similar to my own. From a hopeless case back in 2007, things are looking more positive as the years pass. But what if that wasn't the case, and I was unfortunate to have a disease, where nothing much is changing in investment or outcomes?
My campaigning, for improvement in cancer treatment/support cuts across all cancers and I was very interested to hear about the work that Lord Saatchi is doing around innovation in cancer treatment. My opinion is, that this work is well overdue. In a lot of instances we have been using the same treatments whilst getting similar outcomes for years. It is exciting that this has now been brought to public attention, and the fact that it is being driven by a very high profile person is fantastic. Naturally there is a resistance in certain areas, particularly the Government, but what this campaign has done, is brought to the table, some of the very real issues that cancer patients can face, and some of the hurdles to possible improvement in outcomes.
There is so much work, still to be done, in the complex world of cancer. The further I get into it, the more issues I can see. But one thing that gets clearer for me daily, is that collaboration in our work, is the one thing that will give us strength. There are many people doing great things out there, but we definitely need a much more joined up approach if we are to progress things in the longer term.
The above are my views and opinions, and it would be great to hear yours. What do you think? Do you agree/disagree?
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.
