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.
You can also read a very personal and considered view from my great friend Jo at ABC Diagnosis who has had more treatment than anyone I know! This piece was published on the BMJ Opinion website!
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.
Well written and very true Chris. As a carer and onlooker with geoff, I realised very quickly not to count our chickens. Indeed seven years on and we still take care not to plan too much into the future. Instead we are happy to celebrate things like, we made it to a holiday and enjoyed it, we managed another summer in the garden watching the seasons change the feel of it. And if we find a funny moment which we try and find every day (that’s our Mantra) positive mental attitude can get you through a lot of things. So we continue to be ourselves and have a laugh about life because there’s no other way of looking at this desease in the eye unless we have a plan of action. Keep continuing with your wonderful work and keep your positive attitude. Thankyou
Thanks so much Sue for sharing your own ways of dealing with this dreadful disease. I love you guys and how you deal with the so many knock-backs that life has thrown your way. You are so right, it really is the simple things that make life now. Like you guys I also keep smiling through, and will continue to do what I can to help others. Your support is very much appreciated! See you soon, Chris
Well written Chris Very thought provoking
I didn’t celebrate in the hospital or ring a bell.. I went home, that was enough of a celebration. I held the hand of a terminal patient on the ward as he went because we are all in it together, his family just made it too.#CancerSucks
Cheers so much Peter. We are indeed all in it together, which is why we must understand the variety of emotions around #cancer Thanks so much for sharing your own experience which is so helpful.
Absolutely buddy hopefully you get many responses to this as it’s very important to understand that everything and everyone is different in their way of dealing with #Cancer
The bells on our wards are kept away from the main areas , so do I want my 19 year old to ring it and does he want to ring it … yes we do whatever happens next will happen but the ringing of the bell signifies the end of this part of the journey
Me too! For many I can see it marks a massive milestone and I hope you guys keep ringing it. But I am interested to see yet another issue that is dividing the #cancercommunity
Not a fan of the Cancer bell. Mercifully my unit doesn’t have one. Yes, it’s a very device issue but I’d personally love to see them all go. ( not a popular view point, I know!)It’s certainly a very thorny issue amongst BC community & yes, one size does not fit all!
Popular or not Jane it is your opinion, and I didn’t realise how divisive this issue had become! Just proving that where #cancer is concerned one size doesn’t fit all. Personally I can see both sides of the coin and wanted to ask the question
I’d love to see End of Treatment Bells kept but renamed Goals Bells. Let’s celebrate every little success, a difficult injection, a course of treatment, a birthday or anniversary. For #Younglivesvscancer I believe every hard-won team point deserves recognition.
Thanks Kate, what a great idea!
Some real food for thought here Chris! Thanks, made us consider things too.
Thank you guys! Always so many views to consider
We don’t!
The fear of recurrence is too great. We simply move on and hope without the fate-tempting of anything else
I get that too Claire!
I didn’t ring any bell, though happy to clap for others ~ it’s an achievement just getting to the end of any particular treatment regime. The first ‘clear’ scan, I bought some chocolate biscuits and watched a good film on TV. The second, I took my daughter out for a meal…… I don’t want to tempt fate. I had an aggressive form, diagnosed late, it might still come back to get me in the next couple of years. Small steps, the love of my daughter – this is how I contain it for now. Best wishes from me.
Sounds great Ginny! I have seen many comments recently about the bells, mostly critical, but after what we go through I believe we should celebrate even the small positives. Shows how unique we all are…
Yes. Even if it overcomes me, I will be happy for others in all their steps forward. Maybe I’ll ring the bell when I go. I’d have got through the biggest fear of all ~ death. 🙂 x #GintheSpook
There was no bell at the Marsden Sutton when I was there (don’t know if there is now). The absence of a bell in no way stopped me grinning like a manic, crying and hugging all the staff before legging it out. But that was pre- bells, the ‘dark ages’ I appreciate that people have different views of course x wonder if occasionally people feel pressurised to ring it? But forget cancer treatment bells I want surgery bells (only a tiny bit tongue in cheek)
Ha, I know what you mean!!! I have never experienced the bell personally but delight in seeing the videos of the people that do 🙂 I’m sure people would only ring it if they wanted to……. My own situation is absolutely that, but I love to see people celebrate theirs, however that is.
I’ve not seen one or heard one there in my visits but I will try to find out on my PPI visit next week.
Thanks so much Pete!
As I’ve said with my piece I respect others decision but with #breastcancer the issue is no one is told of their risk it fits into the 5 year sign off where they don’t explain subtype risk & send you off skipping into the sunset – my tweets with the #sbcinfographic say this and it gives the fight analogy that many don’t like ding ding round over? Who knows but we should be told… would you think it’s right on a HIV ward? Ding ding you live you got the drugs … sorry mate you’re going to die. Anyway it will continue to be controversial if we don’t look Like we are dying & instead #BusyLivingWithMets hidden & not recognized
I celebrate the wins, the anniversaries often online within cancer groups. I too was uncomfortable with the bell – Yes you’ve got to the end of gruelling treatment but it doesn’t mean its cured, its gone. However having recently completed 20 radiotherapy sessions for breast which mark the end of my treatment, it was a bit of a downer to just walk out of there like any other day! It obviously depends on where we are on the day I think.
That’s also a valid point Denise! Thank you for sharing your experiences to add to what is a very interesting discussion.
I’ve had 2 breast cancer diagnosis Chris and throughout my treatments and afterwards Ive tried to be positive. But it annoys me when people say we shouldn’t use words like battle or warrior etc. I think anyone who gets the chance to ring that bell should do so, loud and proud!
Thanks so much for sharing Lorraine We all know how unique we are when dealing with #cancer and everyone feels different things. Of course we need #sensitivity for others but must feel free to do things in our own way!
I don’t like use of battle or warrior because if beating cancer was purely about these, there would be MANY thousands of awesome Battlers / Warriors still with us.
Ringing of the bell or any other celebration should be completely personal choice with no expectation or judgement
Hiya Claire, Yes I’m not keen on the ‘battle’ wording, but it is still used around the world and in the media. I like using the word journey, but many don’t! When #cancer enters your life, I think you can use any wording you want! Don’t let it #divide us more