The lack of support I found on my own journey led me to do the work that I do, and although things have improved in that seven years, this is still an area that leaves much to be desired, and why I decided that I would personally try to improve this for others unfortunate to be affected by cancer. After years, of volunteering and gaining practical experience, then adding blogging and social media to my work, I can see that I am starting to reach the numbers of people I could only imagine, many years ago. My own experience showed me that a more realistic type of support was required, and I viewed that many issues are common for people affected by cancer, whichever tumour type they had. This is why I work with many diverse charities across the country, as when I hear cancer, I see people, not a specific disease.
The talk on everyone’s lips in the charity world is the impact that the incredible Stephen Sutton has had. Due to the power of social media his campaign went global, and the money is still coming in, reaching close on four million pounds for The Teenage Cancer Trust. But in amongst all the hype, was the fact that Stephen was diagnosed with bowel cancer in 2010. Yet another incredibly young person taken by this disease, which if diagnosed early enough, can be dealt with.
I was asked, if Stephen was raising money for bowel cancer, whether the total would be as high. My opinion was that it would, as I felt that people were donating for Stephen, and whatever cause he was following. But that question got me thinking! We have some big brand charities, which are commercially very popular, and cover many of the more common, publicised cancers, but it’s very true that there are many cancers that receive very little support and funding.
So what makes one cancer more of a priority than another? Of course when looking at limited resources, the financial element must enter into the argument. But in my opinion, anyone affected by cancer should be able to access the same support. Cancer is life changing, whichever one you have. In recent years, marketing has played a massive part in raising awareness, but my feeling is that the tumour types that don’t have the money, can’t afford the advertising campaigns, and are getting left behind.
The celebrity culture we now live in, can certainly help with this, but it feels to me that we almost have cancers that have become ‘fashionable,’ and others, because of the nature of them are not so. Many cancers have entered the ‘main stream,’ and are accepted commercially, which enables us to do good things with the money. But others despite the continued loss of unnecessary lives, are not.
Let’s be honest, talking about our vital organs is not something we will do willingly. Particularly things like our own bowel movements! Still so many young people die of bowel cancer unnecessarily because of lack of awareness, and hesitation to talk about ‘what happens downstairs.’ How do we break that cycle?
Many members of my social media belong to four different tumour types, bowel, pancreatic,womb and brain. I know from the work I do and the conversations I have, that there is very little support around for those people in comparison to what is available for other cancers. Is it that we have made great strides, in talking about cancer generally in the last few years, and these will catch up with the others? Or are they destined to be the bridesmaids of the cancer world?
Does the solution lie purely in increased funding and marketing? We have come a long way in the cancer world in recent years. from it being classed as a ‘death sentence,’ and being whispered about in corners. Now it is common to see adverts and articles daily, but still some cancers remain outside of that. I can’t imagine that situation will remain long term, but my concern is what happens for those people that have these less ‘popular.’ diseases now?
Most people look to specific charities for support and I have been to many of those. A few of the busiest ones look like call centres with the numbers of staff they have, but the average ones have few offices or staff. If you have one of the rarer cancers, it is quite likely you may need some very specific help which no other organisation can provide. New charities are starting all the time. that want to fill in the many support gaps, but the key here is sustainability. The big, established organisations seem to be taking the larger slice of the cake.
In summary, I liken the charity world to the sea. There are sharks and goldfish swimming together. When the food gets distributed the larger fish get it all, and the goldfish eventually die. Maybe this is the time for more collaboration between organisations, as this issue is not entirely about money. Ultimately we need the people affected by cancer to all have the same opportunities for support which is currently not happening.
What are your views and experiences? Can you see a way that might help rarer and less popular cancers. Is it entirely about money?
The Department of Health prioritised lung and bowel cancer – more cases / less successful outcomes – along with breast cancer in women over the age of 70. When asked about womb cancer their reply was along the lines of ‘we can’t do everything’.
I can just imagine that scenario Deb! Unfortunately in the area of health, people immediately think money, which of course helps, but is far from the only answer. Sometimes it’s about looking at the problem differently. If we throw money at things it doesn’t always make it better.
My view is we need to look at the entire cancer picture, and not just by tumour type and numbers. However that will take time of course so we must continue raising awareness of these issues.
Thanks for sharing your experience, this subject is getting a lot of feedback.
You make very valid points Chris. I think there are a lot of cancer patients who feel sidelined: looking at the overall picture might help them to feel less isolated and that they are being taken seriously. Hopefully with your work, and that of others commenting here, your vision will one day become a reality. Thank you for everything you write and do.
Thanks so much for your comments. I think you have understood exactly, the issues which I am writing about. I feel that support should not be based on whether you have a common tumour type or not. You are right when you say that there are people who feel ‘sidelined.’
In most cases, which ever cancer you are affected by you may require support. This should not be determined by the ‘popularity’ of the disease you have.
Thank you for taking the time to comment, and I hope you continue to enjoy this site.
Another great blog. Yes having travelled the brain tumour road and with a low grade – non cancerous tumour but devastating in its impact with almost no support apart from my discovery of a local charity. Now I have breast cancer and am inundated with leaflets, courses and support…
I don’t have the answers to fill the gap but am working on it!
Thx for your comments Dawn, always appreciated! Your own example highlights exactly the point I am trying to make. I don’t know the numbers but there a very many people that fall outside of the ‘mainstream cancers,’ and therefore don’t receive the support they require.
I totally understand the financial issues, of course, but I feel with some clever thinking, we can have a better system than we have now, where some people get a lot, and others very little.
I’m pleased to hear you are working on a solution! Thanks as always for sharing your own experience, which is always helpful to others.
As a breast cancer survivor I get what you are saying (while being very grateful for all the pink) as my brother-in-law passed away from esphogeal cancer. Never see a fund raiser for that one. Thanks for the great blog.
Hi Carol. Yours is a perfect example of what I am talking about, as is the one from Dawn. So sorry to hear about your brother in law.
I’m so pleased you are enjoying the blog, and many thanks for sharing your own experience. There is a picture starting to build here.
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Very valid points and certainly ones that I not only agree with but have experienced. Diagnosed with Phyllodes in 2009, I remember distinctly when my surgeon and CNS told me what it was and that they had absolutely no information about it nor could point me to anywhere that did! I called the ‘usual’ big charity support lines for help but were told they knew nothing and couldn’t help. I was already struggling with it, so this truly didn’t help!
That led me to the internet (a place I was told to avoid looking) and through a blog found someone else in the US also diagnosed… this then led to our setting up a support group which today as over 750 members.
HOWEVER we are all patients, there is no research, treatments are different between countries and we rely on one another for advice.
As a group we are a valuable source of research. We also often talk about doing fundraisers so that some research may be conducted but who do we give the money to?
As for your idea of sharing resources – definitely. But I’d add something… resources need to be ring-fenced so that for the rarer cancers where it takes longer to collate ‘participants and/or tumours’ the resources are still available.
Another great example of what I’m talking about. It must have been very difficult at the start of the process Anna, with so little information available. I totally understand the financial issues around rarer cancers, but we must find a way of helping everyone affected by cancer in a similar way.
There are times when it feels that there is some form of hierarchy with tumour types. What do you do if yours is not a popular one?
I agree with all the points you raise above, and you are so right about ring fencing resources. My personal view is that we need to understand that we are all people affected by cancer, and have similar needs, and shouldn’t be defined by tumour type.
Thanks for taking the time to share your valuable experience. Chris
I completely agree that cancer support including but not limited to research fundraising has been much too narrowly focused on certain types of cancer. I think this has long needed to change and be more broad-based. I’m afraid at least part of the reason behind this has been the association with “cause marketing” and whether profits can be made around having people buy products while supposedly supporting a cause. This won’t be easy to change. I do think there is some hope in that the general trend in cancer research is more and more about mutations and pathways that are common across cancers rather than related to site of origin. Thanks for raising this important issue.
Thanks for your comments. It is exactly that point which I am talking about. Support is now far too ‘narrow,’ and entirely agree that this is related to ’cause marketing.’ I am certainly doing my best to change things in that area! Unfortunately we have become a marketing and consumer led society.
I really appreciate you taking the time to write your thoughts,and for sharing this post. Chris
Just received a phone call from the Hospice.
How do they get it so right supporting a system we pay a fortune for so wrong?
A very good question! A smaller organisation? Not reliant on central government and run by politicians? Much more accountability and a lot less bureaucracy? Maybe a combination of all of the above? Certainly not so many ‘layers,’ meaning much better communication.
Thank you so much for sharing your thoughts, at what must be a very difficult time for you both. I am very happy to learn that you are at last finding the support you deserve. Chris
Wow, I feel like its fate I ran across you on twitter and now this blog. This is the exact problem I faced when diagnosed with cancer and the problem I’m trying to solve as well. I would absolutely love to talk with you in private via email or phone about my ideas and what I’m doing to help change the cancer community. Please look at both my websites I linked above and hopefully we can talk soon. Again I’d love to share my ideas with you and get your input on my ideas.
The wonders of social media Nicolas! I have checked out your sites, and I think we want similar things. Always happy to collaborate. I have sent you my email by Twitter DM and will look forward to hearing from you.
Many thanks for getting in touch, Chris