I have always been personally aware of the inequalities of cancer support, and I was prompted to write last weeks post by some interesting conversations with people, who also had some similar views to my own. The object of this blog is to open up a dialogue by writing about subjects I know are current issues in the cancer community.
As you are all aware by now, I have opinions on most things related to cancer, but it’s not only about what I think, so I try to facilitate a discussion. This enables me to understand what people really feel about things, and can give me some good solid ammunition when I am in communication with health professionals.
This week has been the busiest week by far in terms of feedback, regarding my last post. As you can see, we have many comments posted on the blog, but most action was through Twitter and email. Also wherever I went people wanted to talk about their own examples, which is great. The most interesting thing for me was the cross section of people who wanted to share. Obviously, my piece was aimed at patients, but I heard from health professionals, charity workers, and people who were not even directly involved with cancer, all telling me examples of what I had written about.
Interestingly, almost everyone in the very diverse range of experience I heard from, thought that they were the only person to think like that! Most worryingly for me is that I heard from many people working within service providers in the cancer sector, who were telling me their own examples, of how their organisations can be so much better. They were pleased that I was bringing this subject out into the open. More importantly, so many patients were in contact with their own personal examples of how the current support system is failing them.
When I was first diagnosed with cancer, way back in 2007, everything that I experienced felt like I was the only one. I couldn’t seem to see beyond my own problems, and didn’t really believe that anyone else could be going through what I was. But they were of course! Social media wasn’t as common then, so I only had my ‘clinic pals’ to compare notes with, but it became quickly apparent we all had a lot in common. Our issues were similar and I wanted to try and improve things to give the patient much more of a voice.
Now with the power of social media, we can connect around the world with others going through similar things, and we can all compare notes if we want to. Sometimes, not necessarily a good thing! We can actually help do something about that feeling of isolation that we have all experienced, which is one of the main purposes of this blog.
The feeling of isolation doesn’t only affect people with cancer, but everyone. My thoughts turned to some of the people I spoke to this week who were doing things within their organisation that they weren’t entirely comfortable with. They felt very alone, and didn’t feel able to talk about things at work. I found this particularly upsetting.
My personality means that I am always happy to share information, and will always speak my mind in a hopefully polite manner, but I understand fully that I am in a minority here. However I have never let that stop me doing what I believe is right. When I started my quest to improve the psychological end emotional support for people affected by cancer, I came across ‘brick walls’ wherever I went. Most large organisations smiled politely, but offered no help whatsoever, in fact many put obstacles up. I knew then that I must continue!
It took several years before I received my first breakthrough, and during that entire time I questioned my own judgement so frequently. However, after a very tough ride, and a lot of personal experience gained, it seems that I am not the only one who feels like this, I am now joined by many people from around the world, who help me with my cause.
So my message is that at whatever stage in life you are at, you may feel that you are the only one thinking like you do. I can assure you, you are not. Cancer can do many things and certainly it removed the self confidence I had, which is where doubt crept into everything I did. It has taken 7 years before even a minute part of that has been restored. When you are seriously ill, it is not naturally the time when you want to start communicating with strangers, so it is no good anyone pushing you to speak to people.
It can be a difficult process to find others, similar to yourself. Sometimes that happens purely by chance, but they are out there. This blog and many others can act as conduits for communication which can be expanded as required to suit the individual. In this day and age it is no longer acceptable for someone to feel isolated because of their illness. We now have plenty of tools at our disposal to help with this but we need to work a lot harder to see that people affected in this way do not fall down the many gaps in our current support system.
Please feel free to share your views, and experiences. This is invaluable in helping me help others. This blog is read by a vast range of patients and senior professionals around the world so is a great way to get your views out there. Many thanks!
When I was given a womb cancer diagnosis back in 2010 I’d never heard of this form of cancer and didn’t know anyone who’d had it: there was no-one to talk to who’d been through it. The support I was offered was to phone the cancer care nurse; I didn’t do so unless absolutely necessary, such as when I developed a complication post-surgery. Check-ups were / are purely to look for clinical signs of cancer and nothing else so there is no support given there – not only that but the hospital I attend no longer had a support group so there was nothing to offer patients in that respect either and that remains the case to my knowledge. Patients plug the gaps themselves via social media but it takes time and effort and isn’t always welcomed by the medical fraternity. I follow your blog regularly as I find it invaluable in raising the issues all cancer patients face. Thank you.
Hi Deb. Support for people affected by cancer, is what I am about. I never have been a person to ‘walk on by,’ when something is not as it should be. My own experience has shocked me if I am honest, and is what has prompted me to set about making some noise about it!
In the last week I have heard many stories, similar to the things you have described with your personal experience. Thank you for sharing, because when things are written here, it encourages others to tell their story too.
As I mentioned in my blog, I received many private messages from people within the system who were supporting what I was saying. I think we all know, that unless the support that we need is patient driven, it just won’t happen.
The work you and Kaz do, is probably a perfect example of that. Incredible to think that there would be very little support if you weren’t doing what you do. Your comments are much valued! As you are aware, there are many blogs around, but I have a unique perspective, as I am a current patient as well as collaborating with numerous organisations.
Thx for not only sharing your own story but mine too. We can only really be effective when we work together. Chris
We were at ASCO these past few days chatting with many support groups.
The consensus is clear: there is nothing stronger than a survivors’ story, a success story, a personal story.
However, the concern was that this is not enough. We need to turn this into a dialogue, an ongoing conversation that peels the “cancer” onion and goes into deeper discussions.
Reading a story is good. Exchanging stories is better.
Take care, everyone…
I wish I was able to attend ASCO, it sounded very interesting! I agree with everything you have said above. Including the fact that stories are not enough, which is why I am doing this work.
When talking to health professionals with these powerful stories, it only appears like a short term fix. The enthusiasm for improvement wains quickly afterwards.
If we can collaborate at all with what we do, we may be able to move things on quicker. Many thanks for dropping by, with your comments and look forward to hearing from you in the future, Chris
You may or may know how passionately I believe in the power of sharing our stories. Through sharing comes healing, empowerment, personal growth, friendship and a sense of belonging. It’s funny how we sometimes believe we are the only one thinking the way we do or feeling the way we do. And no one should have to “do” cancer alone. No one. Thanks for all you do.
I do know how passionate you are about sharing Nancy, and I follow your wonderful blog with interest. It is only in recent years that I realised I am not the only one!
Social media has certainly helped us find others experiencing similar things, but is far from the complete answer.
We are all part of a team, trying to improve things for others. thank you foe everything you do too Nancy, and for your support. Working together is the only way we can have some impact.
Thank you for sharing your thoughts here, Chris
Chris, I can’t get access to your story. Perhaps you could email or re blog