Normally, I like to have my new blog post written and launched by Friday each week, but since the increase in my treatment regime, and prior engagements made long ago, this week and next are particularly difficult and will find me writing at the w/end. However, another reason for my time issue, is that I have had contact from 3 people, who I have encountered in very different situations, and have asked for various forms of support with their issues.
This prompted my thoughts for this post. All of these people are unfortunately, 'experienced patients,' with family, friends, and medical teams around them. However they have chosen to contact me, regarding their issues. I wrote last year that it was 'time to look at the ways we offer support' but I also wonder if some of the support we need as patients, is just not there at all? Maybe we don't even know what we need?
Giving and receiving support is extremely difficult in a lot of cases, particularly when something like cancer is involved. There is no rule book, to guide either party. You as the patient, don't really know what you need until it becomes apparent, and your loved ones/friends can't understand what you are going through. Also if you are anything like me, you hate asking anyone for anything!
Experience has shown us that most people don't feel comfortable discussing certain concerns with either their clinicians or loved ones, for a fear of 'burdening' them. It is also extremely difficult to have to admit to people you know well, that you are finding things tough. Particularly if you are the person that people normally look to when times get difficult for them!
I have met a lot of people affected by cancers similar to mine, and many that have gone through a stem-cell transplant, like mine. However I can say that without question, everyone's situation has been unique. Personal circumstances, treatment regimes, health prior to diagnosis, complications after treatment, and the psychological effects on them from the whole process.
The word support means different things to us all, and we can offer it in different ways. One increasingly common method now, is by giving information. Surveys have shown that informed patients are more likely to take control of their care pathway, which will result in improved outcomes. This is great, but speaking personally I do not feel supported at all, by a handful of booklets! This is only a small part of the story. Knowing what may happen to you, and what the treatment is likely to do, is helpful, but also frightening. What do you now do with that information?
As my life has taken me in this direction I spend a lot of time in the company of people affected by cancer. Not only patients, but professionals, family, friends, and organisations working to improve things. I also have a lot of communication with people who contact me via social media. I am still shocked, how many people cannot find the support that they are seeking.
Why is this? Possibly, because what we require, can change from day to day. As our world goes through the 'high-low' process, our needs are constantly changing. Many things that occur for us, are outside our personal experience boundaries, and we have no 'back catalogue' to drawer on.
It seems that my personal experience, is the major qualification, in the support process. One of the reason's that I started doing the work that I do, is that I 'get it!' Much as people tell me about different schemes and projects that are starting, or already exist, there is no credible 'official' system that caters for what is required.
Maybe, a chance conversation, or a blog post stimulating your thought process, may prompt
the support you have been looking for. Social media has opened up the support arena greatly, and there are millions of us sharing our experiences with the world. I know I have received huge help from this area.
In summary, I'm very happy to be able to help where I can, and feel privileged to be invited into very personal areas of peoples lives. Unfortunately, I am unable to offer a solution to the professionals who ask, how can we improve things for you guys? I am not convinced that there is anything 'official' that can. Cancer will always create different 'grey areas' for all of us. Definitely a place where 'one size does not fit all!'
Do you feel that you are able to access the support you feel you need?
Firstly, I would like to say that it is not me asking the above question! This came from one of my followers on Twitter, and it got me thinking. The reason that tweet had been sent, was they had found that since they were in remission, and treatment had finished, the amount of followers they had was rapidly decreasing.
They had very quickly put the two things together and made that assumption. That then made me wonder, and I looked at my own life since cancer, and many other people that I know, both personally, and via social media.
In several of my previous posts, particularly 'my name is not cancer,' I have talked about the fact that whether we like it or not, we tend to be seen as that person with cancer, rather than the person you were before. Personally I have got used to that now, but I know that people who have little experience of what we go through, have a quiet fascination to know more. I guess also, that in many ways we encourage that curiosity, by the awareness raising that we do. Also, if no one asked about things, we may just assume they weren't interested!
I wasn't using social media from the start of my journey, so I have no direct comparison, but an example that is valid, would be my fundraising . I started raising funds after my stem-cell transplant. There was a fantastic wave of enthusiasm by people to donate. As time moved on, that waned, and raising money became more difficult. Along the way, I have been seriously ill on numerous occasions and the donations have increased. Now, only currently having maintenance treatment regularly, and after 6 years, it is a lot more difficult to raise enthusiasm.
Is it then, our use of social media that gives us a 'slanted' vision of how people view us? A lot of people tend to judge their own popularity, by the quantity , and coming and going of followers. Personally I don't. I have always tried to have fun, and make people smile. That hasn't changed since my diagnosis. What has changed, is that I now use social media!
However, when I review my own journey, since diagnosis many interesting things have occurred, both good and bad. Since, and because of my illness, some incredible things have happened for me, and I have met people, and done things that I could only have dreamed about, in my life before cancer. There is talk in the future about a book. The ironic thing is, that there is little appetite for the first 50 years of my life, the most excitement, is about what happened after I was diagnosed!
Due to my cancer work I am now known around the world, through conferences and social media etc. Certainly that would never have happened in my previous life, but I would like to think that people enjoy what I do, rather than having an intrigue into my health issues. Or am I kidding myself?
Most of the patients that I know through here or personally, were quite happy getting on with their lives, until cancer came along. A lot of us enter the internet world, because we want to connect with like minded people, raise awareness and find out more information. We are passionate about what we do, and open our lives up to the world. This creates, in many cases, a swell of interest, generally temporary, short or longer term. Then our lives go back to a 'new normal.'
Life with cancer, creates many highs and lows, physically and mentally. It can be difficult dealing with the physical side of things alone. At times there is a lot of attention paid to you because of your condition, not only from the medical profession. If there is a positive conclusion for you after treatment, it can be extremely difficult, psychologically, to return to everyday life. Maybe, without a lot of the attention that we were used to.
This year I will be talking at more conferences than ever before, only because of my illness. It is great that so many people are interested in things, and a valuable opportunity to raise awareness, but I would be doing none of this if I hadn't got sick. Certainly my phone never rang with so many interesting people.
In my own case, I will never be far from this terrible disease, so this is part of my 'new life,' but I can empathise with people who might question, where all the people go, when they get better.
What is your view? How has your life changed? Is this an issue you have even thought about? I look forward to hearing from you.
You will always find me on Twitter @christheeagle1
