Supporting people affected by cancer

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?

The Grove Hotel Bournemouth

I am an official support partner of the Grove Hotel in Bournemouth. The only hotel in the UK specifically for people affected by cancer and other life limiting conditions. 

 

2 Comments

  1. It’s an interesting question in terms of support. Personally, I lean on my online community and from there also social media. At FCT I’ve made formed personal connections and friendships through the blogs and the forums, and jumping off from there I’ve learnt about other social media – particularly twitter and facebook, for sharing information. The compassion and advocacy is inspiring online, and it stems from a community that really gets it. I think it’s good to have touchstones sites online, and then to venture out and meet others who understand – which is what it sounds like you are receiving from others. IS that enough support? I don’t know, but it’s the start of a very important conversation in which anyone can enter/share/listen.

    How are you with supporting others (beyond the blog, I mean)? Do you find it overwhelming, or does it come easily? ~Catherine

  2. Hi Catherine

    I have been supporting people affected by cancer for several years, well before I started the blog. I added the social media, so that I could broaden the reach of audience, which it has certainly done!

    My feeling is that although social media on it’s own is not necessarily the answer, as there is nothing like working face to face with people. It does however give us all a platform where we can share experiences etc, globally.It is another medium available to patients.

    The bonus to this, is that we are also joined by Health Professionals, who can see what is happening, and add their experience.

    As I mentioned previously, I have been supporting others, for a long time, and it is the part of my work which gives me the most satisfaction.

    Lovely to hear from you. Keep up the fantastic work that you do too

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