From a personal health perspective, this week has been a very positive one. I have seen two lots of doctors and both agree that my progress is such that my treatment should be reduced further. Meaning that if we continue at this rate I may be off all treatment by Christmas. If this happens, it will be the first time since my diagnosis in 2007 that I will be without any treatment at all! My days of counting chickens are well behind me, but things are finally moving in the right direction for me, and I will take any positives I can.
However, in the work I do, I am never far from reality, and this week, two of my ‘community’ have lost their fathers. I have been with them during the last few weeks, and it has been very difficult. I have been grateful to be there for them, as in both instances there were no other family members able to help, but I was overcome by a terrible feeling of hopelessness as there was nothing I could do, to ease their pain.
When I was going through my first battle for life, and others were losing theirs, I encountered the common emotion of guilt, ‘why me?’ Why was I alive and my friend’s not? I spoke to an expert clinical nurse psychiatrist, who told me that unfortunately in the ‘cancer world’ death was very much a part of the work, and if I was going to continue my path into support, then I must understand that. That felt harsh, but it was a good lesson to learn, and has helped prepare me for not only my own life, but to enable me to effectively help others.
Now, unfortunately end of life is a very big part of my work, and communicating with people who are affected by loss too. My own experiences are now truly benefiting others and all the terrible things I have encountered are enabling me to help people, so I see that as positive too. Like with cancer, I see very little support available for people dealing with loss. But a question I often ask myself is how do we really cope?
When I talk about dealing with loss, it is not only about losing someone. Things can change dramatically, when an event happens in our lives. We may lose our ability to do things, as our brain begins to shut down. As we get older we become less physically able to do things we could before. Maybe we lose something that has a massive sentimental value in our lives. Generally as we get older we are doing more and more things for the last time.
In my own instance, I have lost my ability to work, most of my physical power, my taste, my smell, my ability to sleep without medication, and my reliable health. They say that time is a healer and maybe that is the answer for some? Sure there are very positive days, particularly when the sun shines or there are other distractions, but on many days my mind returns to the things and people I have lost, during this episode of my life.
Those things can be devastating at the time, but somehow we must be able to put them behind us to enable us to move on with our lives. Naturally, everyone deals with things in their own way, and I know many people that have been unable to do that. Of course the time thing is an important factor, and we will all need a different amount of it to help us cope. Can it really be as simple as creating new memories to help us forget about old ones? I know my memory is getting much worse, a combination of aggressive treatment and old age, but there are certain things that are still as clear as they were at the time.
As an older person with cancer, the list of things that I am now no longer able to do is getting longer, and that is becoming harder to take. No more night clubbing and late night partying. Drinking in the early hours means a cup of tea at 4pm! Younger people laugh, but it is tough to accept that slowly you are losing things you always thought you would have. There are times when I feel that I am becoming a passenger in my own life, slowly but surely relying on other people for support.
There is nothing that can prepare you for the loss of someone important from your life, no rule book to help you deal with it. You just have to cope with things the best way you can. We all do our best to support each other in times of problems, but there is always one person feeling the pain more than anyone else, and it is them who despite all the support may well feel extremely isolated.
I would like to reflect in the final part of this piece, to everyone who has lost something to cancer. Those who have lost friends and loved ones, and others who’s lives have been changed, directly, or indirectly by it. In my own case my life has been changed forever but I am grateful for what I do have. I am not the same person I was, but it is only now that I am beginning to understand and accept that I never will be that man again.
How have you dealt with any loss that you have experienced? Please feel free to share your experiences.
Chris, I love your updates. Loss of certainty (even if it wasn’t really certainty), loss of reliable and good health, loss of stamina, fear of the future, is all hard, and takes a lot of soothing, and staying in the ‘now’ always takes huge energy doesn’t it? And then I worry I don’t give back enough, seeing all our support group leaders and members. I guess we doing change our fundamental psyche even after cancer. However, cutting through to what is important – be it a sunny day, a pretty flower, a strong coffee, being at home with my hubbie and the dogs, and being part of cancer support groups. Well that does mainly help me see clearly about what I’ve gained, or kept. Except when I don’t! Still sweating too much small stuff, still scared rigid some days. Still overdoing it, using all my spoons from days forward, and still not accepting things for what they are! So yes, loss of innocence, and naïveté is hard, and also dragging our loved ones into that arena where a cold is never a cold. Chris, you handle these subjects with a lovely light touch. Glad that you’re having a relatively better time healthwise, and liking the day at a time mantra. Xx
Thanks so much Daisy. I think you have taken from my piece exactly what I am talking about! All of the above are emotions I encounter, but I am much more comfortable in my own skin now. I say no if I know something isn’t right for me, before I tried to do everything.
The little things mean the most, and I am very precious with my time. We all have to find our own way I guess, but I am definitely a one day at a time man! My journey has shown me many dark places, but also many positive ones, so I have learned to expect the unexpected.
So pleased you are enjoying the blog and thanks for sharing your thoughts and experience which is so valuable! Chris XX
Chris, you so very eloquently have expressed many of my own thoughts and feelings. This is an amazing and thoughful post. Thank you!
Thanks so much Dixie! Really happy that you enjoyed the post. Your comments are much appreciated. My best to you, Chris
Loss! I never appreciated how extensive loss could be until my health journey. Like you I have loss of energy, loss of independence, my ability to drive, work, socialise in the way I used to, loss of friends who can no longer cope with my ongoing health issues, now loss of my appearance as it was with the breast cancer. But like you I have times when I feel ‘survivors guilt’ for still being alive, I am lucky to be alive, that doesn’t mean I don’t (quite often) mourn my losses, but I try and balance that by celebrating what I do have. Today I am going to an arboretum to be at one with the trees, something I couldn’t do if I worked!
Keep up your brilliant writing Chris I am in awe of the energy you invest in supporting others xx
Hi Dawn. From what you have described, your feelings pretty much mirror my own. I have just returned from a lovely few days away with my grandchildren. Physically and mentally all consuming but I am grateful for times like these, although I now need a few days to recover.
But My life is planned like that, I am aware of my limitations and instead of constantly fighting my demons, I do my best to live with them. Rest is now the key for me.
I hope you enjoyed the trees, and your comments about my work are much appreciated! My best to you both, Chris
Great article Chris. I particularly like the idea of creating new memories to replace the old ones. Although that said, perhaps it is more about keeping the old one as ‘happy memories’ and finding new ones,albeit it different ones, that fill that void. I don’t want to forget my old memories, but need to ensure I look back at them with fondness and not pain at what has been lost.
I am trying at the moment. I gave up work to enjoy life more, but now find it frustrating that I did as I hate being a ‘stay at home mum’ even though I feel I should due to the myeloma I have. I fundraise (#40challengesb440) to fill the void I think. But there is also a need to ensure that this doesn’t just bury the issues and the regrets. I’m not looking to the end of my challenges in January, but articles like yours will hopefully help me to focus on something just as positive 🙂 Perhaps a new job!
Glad you enjoyed the piece Deb, and thanks for taking the time to share your thoughts! You are right about the old memories, because of course they are what made us what we are today.
The point you make about work is a massive one and you will definitely enjoy my next piece! I am enjoying reading about your challenges, and your blog is fab 🙂 You talk about filling the void, and I have often thought that about the work I do, and will be exploring that in the new piece.
Thanks for sharing your experiences, which are always great for others to read. Please come back and join me on the next piece, I will be interested in your views. Very best to you, Chris x