This question is actually not as crazy as it sounds. In the last few weeks, I have had numerous conversations with a very good cross section of people about the lack of support for people affected by cancer, once they step outside the hospital environment. Despite, the length of time of my own personal experience, I am still shocked, how little support is available.
During my conversations with professionals, the biggest issue that I find is a demarcation of responsibility. My doctors, are doing their best to keep me alive. They care for all of my physical issues, either as an inpatient or by giving me drugs which I can take at home. Once I am outside of that scenario, it feels that I am on my own. My family and friends have been with me, for every step of my journey, but as I have said in previous posts, “I am the only one walking in my shoes!”
I am the one feeling the pain, and mental strain, of trying to stay ‘normal.’ Attempting to live a life, whilst trying to stay alive. Fitting in good things, around treatment and hospital appointments. Sitting at home, whilst my friends continue with their careers, and I do my best to be useful, as my body becomes weaker. Thankfully, the Internet was invented in my era, and I have been able to use my mind much more, and find different ways to use my skills, and occupy my time.
Talking to numerous of my fellow patients, I have yet to find many, that have been able to continue their careers where they left off, prior to their diagnosis. Many have had to go part time or are even unable to continue working, due to physical issues, or the amount of time spent at hospital. Several have been made redundant, and despite discrimination laws, are unable to find another job, once the word cancer appears! If you are not careful, a feeling of hopelessness can affect you. If you are unable to work, this can then create financial issues, which can then put a strain on domestic circumstances.
In the above couple of paragraphs, I have talked about just some of the problems that can be encountered by someone dealing with a cancer diagnosis. There are many more! One of the most common forms of support discussed as an option,is counselling. I have two observations on that. Firstly, there are very few counsellors around and definitely not enough for everyone affected by cancer. Secondly, there are really very few people that actually require those services. Maybe if you get to the stage of being clinically depressed, but most people are frustrated with what is happening and might just require more practical forms of support.
There are numerous charities around, that are great for giving information, regarding your disease, treatment, financial issues etc, and they even facilitate forums where you can find like minded people, with similar issues. However, these facilities are rarely ‘joined up’ and tend to be a ‘one size fits all.’
The biggest problem, that we face, is that cancer affects us differently. Our circumstances are all unique, so there is not one single solution. To find the answers to the questions we pose, will take a lot of hard work, talking to many different people across many different organisations. If we are honest, most of us don’t have the energy or persistence for that.
Using my now, very large back catalogue of experience, my opinion is that we need to approach the problems of cancer, in a much more ‘holistic’ way. After all, our physical health is affected by our mental health, and if we are anxious about issues outside the hospital, that is going to affect our general well being. But where does the line of responsibility get drawn? Is it right to spend time with your clinician talking about your inability to find work etc? How do we drawer all of the strands of our care together?
Apparently, the survivorship issues that we are facing now, are because we have become more successful at dealing with cancer. The drugs and treatment regimes are more effective, and we are living longer because of that. However, this is just the first step. We now have to look at the quality of life that we have, and how to deal with the psychological and emotional effects of our experience.
How are you dealing with your survivorship? Do you feel that there is enough support around? How would you solve this issue?
Great question Chris! With more and more people “surviving” cancer due to early detection and new drugs for the treatment of the disease – it is time to put more plans in place to deal with this growing body of survivors. For some there may be chronic physical side effects which needs to be managed, for others there are pyscho-social adjustments which need attention and for all of us, we need to be better prepared and supported in knowing how to live a healthier life for the remainder of our lives.
I couldn’t have put it better myself, and thanks for your comments! During my time spent in the clinical environment I see more and more people struggling with ‘survivorship.’ Of course, it is marvellous progress, that we have this issue, but unfortunately, as we both know, there seems to be very little being done to improve things, for people living with the after effects of their treatment.
There is just nothing in the official system to support you once you have left the security of your hospital. From my numerous discussions with clinicians, that’s where their work finishes. Their role is to do what they can to keep you alive, beyond that ??
Do we demand too much, to ask for a quality of life too?? Why shouldn’t the next step be part of the system too?
Many thanks Marie, Chris
When I tell people about the cancer experience, they almost don’t believe me. The total lack of care when you leave the oncology office in the US is stunning. Locally I’ve put together discounts at over 80 businesses that provide healthy, helpful and fun products and services. Things like rides home from chemo, concierge services, private chefs, dog walking, private trainers, etc. to help. (see http://www.anticancerclub.com) We’re now adding services such as mediation, counseling and nutrition guidance that can be delivered world wide via the web.
Until you’ve walked in these shoes, you just cannot understand how difficult this is. The exhaustion, the fear, the uncertainty, the doubt, the need for hope. How does one explain this web of need and emotion that is fundamental to the cancer experience to the average person whose life is focused on the idiocy du jour. You simply don’t.
How do I cope? I just do it. I control the factors I can. I eat a healthy anti-cancer diet; I meditate daily; I get exercise (getting a little lazy on this one on my third round of chemo in 4 years!); I find people that do care, I talk to them and I accept help when I need it. I even ask for help occasionally. This behavior is 180 degrees away from my formerly totally self sufficient illusion of myself.
As for a solution, I don’t want more government in my life, but I’d like to see some financial support, perhaps in the form of being able to deduct all the expenses and carry the entirety of those “losses” forward if they exceed the current year’s income; I’d like to see more awareness. Perhaps friends could band together and help by putting the cost of a cup of coffee towards a much needed massage or acupuncture session for someone with cancer.
In the US we have all this hype towards “the cure”. Hype is a salable illusion. The reality of the cancer experience is not. So, you’re on your own when it comes to cancer survivorship!
Thanks, Chris, for much needed insights and discussions into this topic.
Founder and Member, Anti-Cancer Club
I don’t think that there is a lot I can add to the above. The experiences of people affected by cancer, are all pretty much similar. As you say, unless you have experienced them, it is very hard to understand. I actually believe that we are still learning a lot of this, and that is why we are not really prepared for it.
It is a bigger problem than people like to make out! As I said in my piece I am still shocked to see how many people are suffering the after effects of their treatment, and can find no support.
The system is so difficult to navigate too, so very difficult for most people. I love the way that your organisation deals with things.
Many thanks for sharing your thoughts and ideas, with us all Pat. My very best to you, Chris
Sometimes I think the resources are there, but the energy it takes to reach them is not always available. That’s why online support is essential, it’s easy to access. But taking things further, wouldn’t it be wonderful if each patient was assigned a “new normal” counsellor or support assistant who could help go over options for survivorship support (so many of which are free through charities) and suggest what fits the person’s unique needs? I think having one touchstone for all that is available would be a fantastic service. But even if this already exists, patients need to be referred onward by their treatment team. That’s a crucial step I feel is missing. ~Catherine
Your above comments have really hit the nail on the head! In a lot of cases you are right, the resources are there. But nothing appears to be joined up, and as you are only too well aware, the last thing you want to do after treatment, is to spend hours searching for help.
Very similar to your suggestions above I would like to see a survivorship contact for every patient discharged, after a cancer diagnosis. This person could help signpost to areas of support. They would know the patients needs well, outside of the clinical environment.
That might also help stop a lot of hospital visits from patients who are confused. Maybe these people could be community based and visit people at home? It would be that extra support which is currently missing.
I think you and I should collaborate in fixing this cancer world! Thanks so much for your comments Catherine and I am so pleased that you are enjoying the blog. We now have many regular readers in Canada. Thank you, Chris
This is a great article, Chris and I think you are doing the right thing by raising awareness. It’s a very important subject. I think that is also very therapeutic for you to write on your blog, right? Wishing you the best!
Your comments have just found their way through the system! I can only apologise 🙁 I am so glad that you enjoyed the post. Raising awareness is a big part of what I do.
You are also correct that I find it very therapeutic. All my guest bloggers say the same. I would encourage people to write about their experience if they are able.
Your comments are much appreciated. Thank you, Chris
This is an excellent question and article. ‘After cancer’ has been one of the hardest bits for me. I still have cancer, stage 3c melanoma, but I am on 3-monthly checks and biopsies as and when mets occur. I started back in my career in April after 7 months of trying to find work and I was horrified at how fragile my self-confidence was (and still is although it’s slowly building up). Cancer messes with you in so many ways that people just don’t realise. The few people who know about my cancer said how pleased I must be to be back to ‘normal’. But psychologically, I will never be anything like the confident, energetic person I was before.
Firstly, I would like to wish you well with your own situation! Your own personal example which you have described, is unfortunately so common, and unless you have experienced something like we have, it is very difficult to understand.
It took me a long time, to come to terms with my own issues, as best I could. I am now so aware that cancer messes with your head, and no longer beat myself up, when I find I can’t do some of the things I used to manage.
These sort of issues that we face are one of the reason’s that I write this blog. I do a lot of talks, but this enables me to get the word out, across the world. Yes, I am lucky to be alive, but I want the system to know that there are so many things after treatment that are just not understood.
Apologies for my delay in responding, but I have managed a few days in the sun, and just returned. Thank you for your above comments which the readers always find useful, and I look forward to welcoming you back to the blog soon.
Hi Chris, I’m new to your blog, but I’m liking what I’m reading already! Thank you to Marie for directing me here. I find that survivorship is much harder than I had imagined it would be for a whole host of reasons. I’ve written about tiptoeing through it. That’s how I’d describe it one word – tiptoeing. I have found that my relationship with my primary care physician has certainly evolved into something different now. I feel as if she is the one left with helping me to pick up the pieces. My oncologist (#5 by the way) seems to not want to focus on my post treatment issues. Anyway, thanks for raising the question and for the discussion it’s opened up.
There appears to have been a delay, in seeing some comments. Yours being one. Many apologies! So pleased that you are enjoying the blog, thank you.
I have the same experience, with my clinicians. They are brilliant when I am under their care, but as we all know, many of the real issues occur, if we are lucky enough to be ‘parachuted’ back into the real world. My primary care doctor is not qualified at all in the treatment I am having. In fact I know more than he does!
It really feels that once you walk away from hospital, you are on your own. In many cases, patients have a care pathway, manager. I would like to see an after care coordinator to help you get back to everyday living.
Many thanks for dropping by, and I love your blog too. Thank you for what you do in the online community. Chris