” Unfortunately, science hasn’t caught up with you yet! “

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 Grove Hotel Bournemouth

I am an official support partner of the Grove Hotel in Bournemouth. The only hotel in the UK specifically for people affected by cancer and other life limiting conditions. 

 

4 Comments

  1. There is much, much more work to be done in the complex world of cancer. One admirable thing is your approach to being here and countering the odds. You’re a gift to the online community, Chris. ~Catherine

  2. Hi Catherine

    There certainly is a lot more work do be done in this field! Complex is definitely the right word. Thank you for your lovely words. This blog is the central hub for my work, and helps me get the message out. I have no fear now, and want to help others that are going through what I have seen.

    Thank you for what you and your team do Catherine, and for your continued support. The cancer world is a much better place when working together. Chris

  3. I echo Catherine in calling you a gift to our community. Only you could face the devastating news that nothing can be done to regain your sense on taste and smell and come out of that consultation feeling “lucky”. I also support the concept that innovation should be rolled out sooner, particularly when there isn’t much other hope left. Keep on being lucky, Chris, for years and years and years xx

  4. Hi Yvonne

    As you well know, we all have our issues, to deal with, and thank you for your lovely words. My worst time was on diagnosis. It took me a few months to get used to the fact that I had gone from a very healthy guy to one who may die quickly. Once I understood that, my extra time is all a bonus.

    I am lucky Yvonne! Many good things have come my way in my extended life. Like all of us I have lost a lot, but I still have more now, than I anticipated. My life is lived, one day at a time, and I am grateful for that.

    Innovation is very much on my radar too. Only we, can understand the concept of time with regards to cancer, and I am pushing to improve things there too!

    They say you make your own luck, but nature is playing a big part in mine. Tu so much Yvonne. Be lucky yourself xx Chris

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