I had already decided the subject for this weeks blog when I spoke to an old lady, who was looking very lost in our local supermarket. As usual my wife was trying to hurry me up, but as most of you know I do like to talk to people, and this poor lady appeared to be very confused. Naturally I asked if I could help with anything and she immediately started telling me about how her husband had died of cancer recently. Wow, I thought, why has this happened? She had no family, and had not spoken to a medical person since. In a short time I did my best to recommend that she seek professional help. But that meeting has had a profound effect on me! My wife calls me a magnet for people to talk to and maybe she is right? She is always smiling as a ten minute shop can take me an hour whilst I chat my way round the store. To be fair I have always been like that, but I do so much enjoy listening and learning about people. Ironically in this part of my life it has been an incredible asset in the work I do, so maybe there is a plan to life that we don’t know about?
On Monday I attended my monthly Prostate Support group meeting at my local cancer centre, where I help facilitate a large group of patients and family members. I have been doing this for about seven years now. It is a fabulous group with a great mix of old and new experience to share. It is an excellent way of learning what is happening in another tumour type to my own. During meetings like these, there is always good news and bad to share but this time there was a very common theme, the impact that treatment of their disease has had on their lives. As in most cancers there are numerous treatment options all leading to the possibility of different side effects. Some of the most common ones include erectile dysfunction and incontinence, often leading to psychological and emotional issues. This session was taken up by so many talking about how their lives had changed dramatically after treatment. In many cases they were living with these issues for years, making a reasonable quality of life extremely difficult. Many having to wear pads now ‘just in case.’ Add poor sleep pattern and body image to the picture and you can understand the difficulty of living a normal life.
What I am still failing to grasp is the real lack of aftercare support, as highlighted by my chance meeting with the lovely lady. We all know the psychological issues that cancer can have, particular those people involved in healthcare. My worry is that the reality is, that there just isn’t enough of the right support available in the current system, and never really will be. The NHS is wonderful when dealing with saving lives but for peripheral services can be very difficult. It can be the things that make a real difference to your quality of life that are missing. Physiotherapy, counselling and psychological support to name just a few. But with so many issues common to many cancers, why does it still come as a surprise to many patients? Why are we not doing more to put these services in place?
There seems to be a massive advancement in treatment for many cancers, but little improvement in relative terms with cancer support. My personal view is that it would be more than cost effective to do this and would certainly stop many people returning to primary or secondary care with issues that could be dealt with in a more community setting. The need is obviously there as various smaller services are springing up all over the place, to try and fill the gaps, but here sustainability is the issue. Without the marketing and publicity of larger organisations it is very difficult to flourish long term, so we obviously need a much more coordinated effort.
To help people in a community setting would have so many benefits for society as a whole and would take some of the strain away from frontline care. Yes it would take some organising and money but we would all receive a great payback from this way of working. We cannot keep pretending that these problems do not exist, people will need help to continue to play a more active role in society. This will not be achieved the way we are continuing to work, we require leadership from the large health organisations to make this happen. Very quickly 2020 will be upon us when it is projected that 50% of our population will be affected by cancer, which is frightening if you really think about it. Half your family and half of your work place? More of us surviving the disease is a wonderful thing but we will need help to continue leading a productive life and become less of a burden on our health service.
Survivorship is bringing us unique problems, many not physical but more emotional and practical. Not just for cancer either, but many long term conditions. Dealing with our illness is great but unfortunately there is now a lot more help required. We are fortunate to be in the age of technology, and I believe that it will have a big part to play in improving things, however nothing can replace the face to face warmth of a listening ear!
Do you have any ideas that can help us improve long term support? Have you seen any positive areas of support that are making a difference? Please feel free to share your thoughts and opinions below.
I so feel for that lady who lost her husband to cancer. 3+years from losing Laura to cancer and I too feel very alone, isolated with no-one to talk too about what happened. I am lucky, I, unlike the lady in supermarket have a loving close supportive family in my husband and son. I don’t like to talk to them as I see thm struggle in ther way and tryntoxopewith losing Laurato cancer utnitneiuld be lovelyntonhav someone to speak to when you feel the need to and that someone just isn’t out there. I have good friends who have lost family to cancer I can’t speak to them as they’re going through their own loss and those young folks who have cancer I can’t speak to them about losing Laura as they themselves are coping with what Laura went through and Laura herself never got to speak to anyone in person about her cancer she dint get to share with any other young person her own age about what they were going through in person and it must have been so hard for she. so I totally understand where thst lady in the supermarket is coming from. There is definitely a big void out there. so many charities said they do the work we are both talking about but where are they ?chris, they are not there for thst lady and they are not here for me. Definitely something has to be done to rectify this. I wish I could have been able to speak with that lady and spend time with her to let her speak of the loss of her husband, bless her, bless you Chris x
Thanks so much for sharing your very personal experiences on here Lesley. Yours is always one of the stories that springs to mind, as the different age groups have very different issues. It must have been very difficult for you both at the time, and of course for you ever since.
As you rightly say there are so many organisations talking about what they do to help, but I see very little of that when I am talking to people. I also know from my own experience, how difficult it is to find a service like that.
I feel nothing will change until we have a radical rethink, on the way we need to support people affected by cancer in ‘survivorship.’ This will take much better collaboration than we are currently seeing, and a genuine will to improve. Organisations need to involve patients much more than they currently do.
My very best to you and your family, and a big hug from me, Chris xxx
Great read Chris – as you know, that’s what the Brenda Kirby Cancer Centre is all about, but we still find that people are reluctant to talk about their cancer. And yet those who have visited and talked found it helped very much. But you also raised the issue of the lady who had lost a loved one through cancer. So glad you saw her as it would have helped her I am sure.
Thx Ken. The Brenda Kirby Cancer Centre is always on my mind with the great work you do in the community. It will take time to break down the social stigma around cancer, but I feel doing it in the community and away from the hospital setting will be a great help. Yes, it was a strange moment, but I felt the meeting with the lady was meant to happen. Thanks for all the great work you guys do in the community!
very impt & much more needs to be done! We see same for women who’ve had cervical cancer treatment https://www.jostrust.org.uk/node/101684
Great work you do in the community.Not all chemotherapy medicines have the same late effects. A lot depends on the kind of medicines used. The dosage and whether chemotherapy was done with another type of treatment are also important. If an organ is damaged, a lot depends on whether it can repair itself. Before starting treatment, ask your health care provider about the possible after-effects of all the medications you will receive
Great work for your community service.
Thanks so much Tanui, your comments are much appreciated.