This week has been an incredibly busy and eventful one for all of us of course, and in honesty I didn’t really have time to write this post, but following my ‘up close and personal’ experiences of the continuing emotional impact of cancer I just had to sit down and write, whilst the memories were still fresh! Naturally all the focus has been on our vote to stay in or out of the European Union, and the consequential fallout from our decision to leave. But whatever our views of that decision, our lives will still go on and the issues of everyday life have to be dealt with. Whilst the politicians continue bitching with each other, the issues of cancer will not just go away, and this week I have been truly shocked at how, despite the improvement and increased openness in the way cancer is now discussed, people are still deeply worried about talking about their disease and the upheaval it is creating in their lives.
Very early on in the week I received an email from a young lady who didn’t know what to do as her mum had just been diagnosed with advanced breast cancer. Then on Thursday I spent the evening talking to a support group in Bridport, Dorset called the Living Tree who I mentioned in my post last week. This group was formed approximately four years ago, in a relatively rural area. I spoke to many members during the evening, and there were several new people who had been encouraged to come for the first time to listen to my presentation. It was an incredible evening as I heard story after story, about the inequalities of work and cancer, and deeply emotional stories of how people were struggling to cope with their own lives. Most had found support within the group, and nobody wanted to imagine life without it. What I found very moving were people visiting the group for the first time to join the discussion, several were very shy but felt comfortable enough to share their very moving stories.
All of the common issues and more were involved in the stories, finance, relationships, young children, work, and the practicalities of life moving on even though you have to cope with your treatment and it’s side effects. Most of these people had issues even talking to their loved ones about how they were feeling, and of course isolation then starts to creep in. All these things we are aware of and discuss openly, yet still people are struggling to deal with them. The one thing that would certainly help for many of us is time, which is of course is our most valuable currency.
Support groups of this calibre are quite rare, and are not the solution on their own of course. We need to be so more aware of the impact at a much earlier stage, and I can’t help but think that health professionals involved in cases at the very beginning must observe many of these issues but there is a hesitation to start the conversation. We now have a ‘Holistic Needs Assessment’ which many people are now given, and is a strong indicator of how people are feeling but my major concern is still that there is not enough of the appropriate support available.
Unfortunately I feel that patients will need to be proactive in their own care, as the system can be very difficult to manoeuvre but you just don’t have the strength to keep asking. My own charity is getting busier and busier with requests for help. Not always financial either, but just someone to talk to, who will listen and try and signpost where appropriate. The people I spoke to in Bridport reminded me starkly, why I do the work that I do. Sometimes sitting in your own bubble behind a screen, can mask a little of the real world. Getting ‘out there’ is always such a valuable part of my work, as you can quickly lose touch with reality when buried in social media for a long time!
On Friday, whilst mulling over the meeting and trying to get to grips with the breaking news of Brexit and it’s impact, we received a mail from a great friend of ours telling us that she had just been diagnosed with breast cancer. She and her husband have just retired , moved house and brought a holiday home in Florida. Now she is faced with a very strict regime of treatment and a difficult prognosis. All their plans are now up in the air and panic has set in. She doesn’t want to speak to anyone or take advice, and hasn’t even wanted to read the literature she has been given. All these things will be done in time of course, but she is dealing with shock right now. She was so supportive of me during my dark times and admits that she never thought it would happen to her, which is also a common feeling.
This situation will become difficult if we don’t start getting to grips with it now, and it is something that the whole of society needs to think about, because it is something that will affect us all in one way or another. But for us to find the right answer we need to fully understand the extent of the problem, meaning we need to communicate much better with people affected by cancer. Even if that means hearing what we don’t want to! The time has come to make positive steps, as cancer doesn’t wait for anyone!
Please feel free to share your own thoughts and feelings and it would be great if you could share this post with anyone you feel may benefit, thank you!
thank you Chris as always your blogs are so thought provoking. I have tried to get people in the hospital and others to let me help to just talk and I would listen to their fears etc but I don’t seem to.get anywhere at all brick walls seem to appear perhaps they think it’s because I am older than them!!! I know I can be of help is it because of age I have all my life been a positive person and afraid I am beginning to feel a bit unwanted. Sorry I am not being a misery just saying how I feel. Thanks again Chris and your family love Georgine xx
Hi Georgine. No your age has nothing to do with it and i hit the same barriers when i talk to the service about offering support. Basically few people want to organise this sort of thing. There is so much goodwill from patients out there who want to share their exp for the benefit of others. But it needs someone to organise it. Charities rarely coordinate with each other and everyone thinks others are doing it. In the end it is left. Another powerful resource not recognised. That is the idea of sharing my exp so others can share theirs. Unfortunately this situation is real. T u as always for sharing ur own experience as it is helpful for me when I am talking to these guys! Big love to you both xx