Having been a cancer patient for twelve years now my emotions have changed dramatically since I was initially told I had just six months to live! I still attend my oncology clinic every two months for regular monitoring of any sign of disease and side effects worsening. With my writing and speaking continuing, and the demand for support from SimPal increasing I find my self talking cancer, for many hours a week. This continues to reinforce how unique every case of cancer is, and our reactions to it are.
On my diagnosis and prognosis I was frightened like nothing I had ever felt! The fear of the unknown and how my life was changed forever. It is certainly very different now, but not in every case for the worse. I am still alive and more fulfilled than I have ever been, and we have seen three grandchildren born since that time. Plenty of cause for celebration? Of course, but I am eaten up by guilt at times!!
All my fears are conquered, as I have suffered some of the worst pain and emotional toil known to man. I have the best job in the world meeting some of the most incredible people, and I get invited to speak in some of the most glorious settings across the world. I am in remission from a killer disease where few people live for too long. But so many of the people I work with/talk to are not in that position, and I can’t tell them they will be. My case has become a beacon across the world, of what can happen if things go well, it gives hope to many. For that I am very proud, but don’t feel I can/should celebrate. Cancer is an incredible adversary and has a nasty habit of creeping up on you when you least expect it. Can we celebrate the little wins in the short term? Are others happy for us whilst they are in their own difficult situation? Or are they just being polite as your good news makes them feel worse?
I would like to discuss a thread that I came across on Twitter recently, about ‘end of treatment bells.’ This is where a patient rings the ward bell at the end of their treatment, a happy time of course and a massive cause for celebration I think. What a psychological lift for that person! When I first saw these in the early days of treatment, I thought what a brilliant idea! Even though I would never be able to ring one, I am just delighted to see others who can. But this thread came from people sitting in the ward who were stage four and terminal, who couldn’t see a way to enjoy the moment. Some went as far as to say they thought the bells should be taken out! That side of the fence I had never even considered.
Having slept on it for a few nights I still feel I love to see people celebrating whatever forward step they can take in their cancer challenges. But If I was in charge of the ward would I think differently now, yes! My time in the cancer world has taught me so much about other people and their feelings. We are not working in normal conditions, everyone is dealing with an incredible amount of stress, which can lead to illogical decisions. Lives are hanging by a thread, not everyone wants to smile. However, laughter and an ever smiling face have been major tools for me whilst dealing with my cancer, but that is of course very personal.
Being in a chemo ward it is very hard to keep yourself to yourself and I have a loud voice anyway, so I was concerned whilst having my own treatment. I even spoke to the sister who said that they would enjoy some laughter. So during my first session I continued being me, and at the end I was stopped by a lady from the other end of the room. “Are you back in two weeks,” she asked. “Yes,” I said, fearing a massive telling off. “Why do you ask,” I said? She replied that her husband had been petrified of his first chemo, but he laughed so much during the session that he wanted to stay on my rota!
Having been so long in this process now, my joy is gained from the progress of others, not my own. I have become emotionally tough to my own situation. Cancer will always leave a long shadow over our lives, whether we are ‘cured’ or not. So how do we choose what to celebrate? Should we go all out in public or be more private? With social media playing such a massive role in our lives now it is difficult to keep things quiet anyway. Ironically, although I am busy on the Internet I now find that I share less and less, and am closing the curtains on my private life.
But we must celebrate the wins surely? How and what to you celebrate from your cancer experience? Please feel free to share your thoughts below.
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.