Well, this week has been a really crazy one! Since winning the award last week, much back slapping has been done, and it has slightly taken my focus from my regular work. I have found it difficult to keep up with people wanting to communicate with me, and concentrate on my cancer work. However, now a lot of the early excitement has calmed down, life is beginning to get back to normal, and I can focus once again, on what is really important.
Since the increase in publicity for my work, I have been contacted by people around the world, and excitingly, from people in Bangladesh, and Africa, where the financial issues of cancer care, are a major problem. In all instances, they were talking about the lack of support for people affected by cancer. They clearly understood that care depended on their financial ability to pay for it, but beyond treatment there was nothing available, to help either patients or relatives.
Shock, fear, anger, and sadness are just some of the emotions that people experience, but the most common, is isolation. These can occur of course wherever you are in the world, but there are two main obstacles in improving this situation. One is that many people do not accept that they have these problems, and the second one is exactly how do we deal with them? In many cases these issues can leave a legacy, long after the cancer has gone.
Cancer can be seen and assessed, and treatment progress can be quantified, however the emotional side of things falls into the vast ‘grey area,’ that becomes cancer support. Our physical treatment, has been tried and tested, and the success statistics are there to be seen. But away from the hospital, the story is completely different. We are all affected differently, by a cancer diagnosis, and it is not only the patients, but family friends etc. It is what I call the ‘ripple effect.’ We will all require different support. Some, a lighter touch than others.
Since my own diagnosis, I have been unable to sleep, without very strong medication. According to the experts it is because my brain saw my situation as a major trauma, and now stays switched on to try and protect me. I have also been unable to accept that this is actually happening to me, which I am told happens to people trying to cope with loss. It was explained, that psychologically I am grieving for my old life and everything I have lost.
Both of the above explanations make sense but nothing changes the fact that they are happening, and I can’t control things. One of the difficulties I find, is that when people see me, they always say how well I look. Of course, unless I am having some severe treatment, my body will rarely show what is going on emotionally. But it doesn’t mean that all is well. How can I expect others to understand what is happening if I don’t myself?
Personally, I am not really one to ask for help, as my wife will testify, but even if I was, where would I go? The very reason that I started this blog, and have a presence on social media is that I was unable to find any suitable help, and still am. Day after day, week after week, I am contacted by people who read my story, and want to talk about their own. Most, like me are very independent, and may see asking for help as a weakness. But I am still truly shocked that in this day and age, we have such little support available for people, during their life with ‘survivorship.’
I don’t see this as a purely economic issue either. My opinion is that because generally we are becoming better at treating the cancer, we have quickly got a generation who are living with many unforeseen side effects of treatment. We have become victims of our own success in many ways, but we have also created another problem. The issues around, work, finances, relationships and general reintegration into society have not really been thought about, as our drive for improving cancer treatment increases. It is only now, that we are beginning to understand some of these and how they impact on our well being.
Treating cancer, is no longer about just what goes on in hospital. For a lot of people the impact of cancer spreads across their life, through their family, friends, work and social life. This may cause them to lose their jobs or the partners, maybe both. My experience is showing me that this situation is seriously underestimated, even by health professionals. The official figures state that one in three of us will be directly affected by cancer in our lifetime. I believe that all of us are already affected by cancer, because I’m sure that we all know someone close who has been diagnosed, thus it will affect us too.
How do you deal with the emotional issues of cancer? What services would you find/have found beneficial for you? Do you feel we understand the issues enough?
I am not aware of the kind of emotional issues you faced, but this could be because I am older and was retired. I also feel lucky as I didn’t have chemo and I know so many people who had a worse time with treatment and whose life is more affected. My main thing is tiredness.
I was aware of difficulty sleeping but that has several reasons. I had that before the cancer diagnosis. And the tiredness of course goes with that.
You wrote about the financial issues in Africa as regards cancer treatment and actually there are issues in the UK too, although of course we are better off. I think there are now issues for medical and social care in many areas now in the UK. Privatisation is a serious danger to care.
I don’t think I’m that good at getting the emotional support either, as you said you are not. I must remember to ask more questions next time I see the consultant for a check-up. They give you the percentage likelihood of being alive in 5 years after diagnosis when they discuss treatments and it’s 4 years now. Nobody says what after 5 years! They only talk about taking the medication for 5v years too.
With the current cutbacks on funding in every area I wonder if they would stop meds to save money! Especially for older people.
Many thanks for sharing your experience. Tiredness is certainly a major issue, for many people. I had a lot of very aggressive chemotherapy, and I’m unsure if it is to do with that.
I was 51 when I was forced to finish work, and I was not prepared for that at all. My hope was that I would always be able to return. However that wasn’t the case.
I am also aware of the financial issues in the UK, which are now beginning to be important. You are right about the five year mark too, make sure you ask, when you go next!
Personally I can’t see stopping meds for older people to save money. I hope all well with you, and remember to ask more questions at the hospital, Chris
Hi Chris, I’m (fortunately / unfortunately!?) an old hand at living with what you’re describing. Eventually I had a diagnosis of Post Traumatic Stress Disorder eight years after my initial terminal cancer diagnosis (though I would debate the use of ‘post’ because it’s never properly in the past when there’s still a genuine threat to life). The best treatment I had was a thing called EMDR (Eye Movement Desensitisation and Reprocessing) from a qualified practitioner – like pouring cold water on a burn, some of the fears and images haunting me were dampened right down so they weren’t so in the present moment, all of the time – it doesn’t ‘deal’ with everything but my sleep has continued to improve over the years along with other things. It’s a new thing to some GP’s to link PTSD to cancer but there are quite a few studies now (largely breast cancer last I looked) recognising the ‘trauma’ impact of it. Hope you can get some help, unfortunately the sleepers don’t make the other elements go away. Lisa x
Hi Lisa. Thx so much for sharing your experiences here. I have never heard of EMDR previously, and so pleased it seems to be improving things for you.
The mind can play incredible tricks on you, and I thought I had things all figured out until the trauma thing was explained! I have tried to discontinue the sleepers but to no avail.
Like you, I’m an ‘old hand’ now, and didn’t expect to be, my original prognosis being so poor. I have had a long time to come to terms with things and feel I am more relaxed about it now. My concern is for ‘newbies,’ although as you say, we are beginning to recognise more issues now as time moves on.
I would like to wish you well with your own situation, and I will now follow your blog with interest. Chris x
Wonderful and important post, Chris. I’m a holistic physician who for some time has specialized in helping people recover from cancer treatment and set up powerful prevention plans, because I saw that these areas are completely unaddressed by the US standard medical system. More recently I have added a life coaching certification, which has given me tools to address cancer’s profound emotional impact as well. After all, if I’m only treating body and not spirit, am I really providing holistic medicine?
Here in the US, there are practitioners who can help with post-cancer issues, but they are generally “outside the system”, scattered and therefore still hard to find. My vision is to create a center where this support is available all in one place, in a way that is financially accessible. Until then, I encourage survivors to speak their needs, and don’t give up until you find the support you need. Perhaps it is the voices of survivors themselves that will ultimately bring about the needed services.
Congratulations on your recent award, and thank you for all you do to give survivors a voice, Chris.
Thank you so much for the above comments, and sharing your valuable experience. Although our two systems are very different generally, it seems that post cancer issues in the US still fall ‘outside the system,’as in the UK.
My feeling is that, this is a vast ‘grey area,’ that no one really takes responsibility for. Many patients are left to fend for themselves, when their spell of hospital care has finished. As you are only too aware of from your own work, many patients do not recognise the issues that they are suffering.
I like what you are trying to do, by putting everything in one place. However of course you guys have the financial issue to contend with. Naturally that exists here, from a health provider perspective, but the real problem is understanding the long term side effects of a cancer diagnosis.
You are also giving survivors the confidence to use their voice, which is brilliant, it seems we both have the same goals! I feel my experience as a current and long term patient enables me to have a unique perspective, of the services that are provided or are missing.
Your encouragement and kind words are much appreciated, and I’m now following you on Twitter 🙂 Thank you for the wonderful work you do too. I hope we may collaborate in the future. Chris
Thank you for coming into my life at such a good time. I swear Twitter is cosmic. Cancer has touched my life 3 times with close family in the past two years.
My mother passed away at ,93 after a sudden metastasis from breast cancer 15 years ago. It was very fast, but very painful as well. Emotionally, though she was 93,.we were close, and it was a shock.
My daughter in law has a 15cm astrocytoma on her temporal lobe, at 38. It is a VERY emotional story, with many heartbreaks. She is terminal, but had her surgery June 2011,.so you can imagine what she and our family has gone through, both medically , emotionally and financially.
The third is my 69.year old brother who had throat cancer, that was improperly treated with twice the amount of chemo and radiation than he should have had. This resulted in remission, but 6 years horrifying chronic pain that no person should ever have to endure. Meds did not control it, and his life was so difficult he isolated himself and moaned. I can’t imagine. I felt helpless. In March he finally had all he could take, and passed away voluntarily. He is at Peace Thank God.
Hi Laura. I agree with you regarding Twitter, and it certainly is a fabulous tool to help like minded people connect. I’m glad that my work is able to help, in any way.
I’m so sorry to hear about your dreadful family experiences with cancer. I can’t begin to imagine what goes through your mind when cancer is mentioned.
My belief is that we are all affected by cancer in some way, either directly or indirectly. My personal experience has shown me the devastation it can cause in people’s lives, and I am working to try and improve support for people.
I write about my own views of things to enable people to think, and maybe discuss their feelings. We have a great support network online, and people are connecting, to help each other.
We truly have a community here, and we are all learning from each other. Thank you for sharing your own, very personal experiences Laura, so that others may benefit.
What makes this work really effective is when people share it, which helps us reach more people who may also find it helpful. Many thanks for all you do too, and I wish you well, Chris
So bang on. The emotional ramifications are only just starting to be considered, and the support just starting to become present. It’s hard to ask for help, and it’s confusing where to go for that help – particularly when of limited financial means. Thankfully the online community can be the leading voice of what needs to happen, but even then, support is needed in many different ways – online, in person, without having to ask… I look forward to when that becomes a priority in supporting those impacted. ~Catherine
Your comments are also bang on Catherine. Cancer support is such a vast area. It means different things to different people, and it seems that everyone would need a unique package tailored just for their own individual circumstances. Of course this can’t happen.
The point you make about having to ask is a very important one. Most of us are very independent and really hate asking for something, so generally won’t. Therefore people will not look at providing services they feel there is no demand for.
As you also rightly point out there is a massive cost issue too. One of the biggest issues I feel is that ‘support’ is very difficult to quantify. So financially it is very hard to make a case for.
It is an area that is rarely mentioned when you leave the clinical environment. I feel the reason for that is because there is so little available.
Online is the key to good support currently, and we are both doing our best to improve that side of things, whilst trying to influence the situation in our own countries. Thanks as always for your great insight into the situation Catherine x