You are diagnosed with cancer. It devastates you and you feel completely alone, but are patient support groups the way to go?
My initial diagnosis of breast cancer came as a complete shock. Life had been running along very nicely and suddenly I was in a breast clinic being given the unwelcome news that had a 6cm tumour in my breast and needed urgent surgery, followed by both chemo and radiotherapy.
Support at this time is plentiful. You have your specialist nurse and a plethora of supportive friends and family. You have plenty to concentrate on as you join the conveyor belt of treatment where you move along through each well planned stage and eventually fall out the other end hopefully cured.
Living after cancer
As many who have experienced this have commented, I found that there is a shortage of support at this stage, as I attempted to return to my previous life and work.
At this time I felt more bereft than I had at diagnosis. I didn’t feel quite right but wasn’t sure what to blame for this. Was it “chemo” brain or radiotherapy or the early menopause caused by the need to block oestrogen levels that had resulted in my head feeling completely empty? I was a goldfish with little memory and experiencing difficulty in performing the simplest task.
It was at this point my excellent cancer nurse specialist suggested I try attending our local support group. I wasn’t keen to be honest. I’m not really a group person and spent a great deal of time at work in meetings which I found immensely frustrating.
“A mixed bag”
Against my better judgement I attended my first meeting and found the speaker (an oncologist) excellent and the ladies a mixed bag but all very welcoming and supportive.
The group had a number of social activities including swimming at a local school and it was in these small groups I gained the support I needed. I met some wonderful people and formed friendships with a small number of ladies with similar attitudes to myself who remain friends to this day.
Unfortunately the group also had a number of members who had been part of the group for an extremely long time and this caused difficulties as their treatments and experiences were completely different to those of the more recently diagnosed. This made meetings, at times, a bit combative as all compared treatment regimens and confused each other.
The group was run by a committee of group members all of whom had experienced breast cancer and were enthusiastic. For me, the main problem was that to keep a group like this on track there has to be strong leadership and in my view this needs to come from somebody that is not one of the patients attending. This kind of group contained a lot of people with strong personalities and opinions and needed independent direction.
Sadly this group, like many others, of its type has now folded as many seek support from the online community or more available specialist nursing services.
Living with a terminal diagnosis
At diagnosis of my secondary breast cancer I was very unwell, confused and completely pole-axed. I somehow had never expected to find myself in this position and just couldn’t compute what I was being told. It felt unreal. The world stopped and I felt like I was standing on the edge of a precipice waiting to fall to my inevitable death.
At this stage there again is loads of support from nurses and the oncologists and for me from the palliative care service.
As I have previously blogged, I accepted referral to our local hospice and there found salvation as I was able to talk about how I felt in an environment where death is not considered a dirty or frightening word. Sadly you can’t attend hospice day therapy forever so once I was back on my feet I was discharged.
So what support is there for those of us who are now living with a terminal diagnosis?
I did attempt to continue to attend the breast cancer support group but it is difficult for others at the group to see someone who has succumbed to everyone else’s worst nightmare.
I stopped going but continued to remain in contact with a couple of people one of whom has sadly been re diagnosed with cancer and is also terminally ill. It has been this friend and what we laughingly call our mutual support group that has helped me through some very difficult times. I have been fortunate to find a like-minded “buddy” and this has worked well for us both.
“A complete nightmare”
A new group for secondary cancer patients was set up by a local charity group and myself and friend decided to attend.
For me this was a complete nightmare and broke every group therapy rule. We sat in a circle and everyone was asked to introduce themselves and explain what was wrong with them. Each lady cried and some were completely inconsolable.
The group moderator also cried as she was so overwhelmed by the grief.
I just wanted to curl up and die and found myself falling back into my previous healthcare professional role attempting to raise the mood with some more positive observations.
It was utterly grim and took me some time to get over. Maybe this is useful for some people as they need somewhere they can go to express their distress BUT I would suggest that this is something that may be better offered by those experienced in palliative care and definitely on a more individual basis.
Help people live with dying
We are a relatively new patient group. Secondary cancer is now considered a long term chronic condition as many people survive for years rather than months. It is also an increasing group as treatments improve and people survive for longer.
Therefore, support groups need to consider how to help people live with dying, including both the practical (eg finances) and medical (eg cancer fatigue and symptom management) needs as well as the psychological.
As people are very individual and will always be at different stages in their disease this needs to be recognised and extremely well managed by someone, I would suggest, who has appropriate specialist palliative care experience.
My buddy’s cancer has progressed and she is now in the terminal phase of her disease and this is extremely difficult for me as a fellow sufferer to watch. This needs to be well managed in any support group designed for secondary cancer patients but shouldn’t mean the subject is avoided.
A life-limiting disease is what brings the group together and disease progression and death needs to be discussed openly and be an accepted norm rather than being viewed as the elephant in the room.
Surely these are services that palliative care are best placed to provide? Support needs to be provided by those with the specialist experience of dealing with dying and all that that entails.
Our culture is one that fears death and avoids discussing it at all costs. Greater understanding of what will happen during the terminal phase could actually help people to deal with it better. I found meeting others at the hospice for day therapy hard but oddly reassuring as they were closer to death than I but still able to live and be themselves and this helped me immensely to lessen my fear.
Support for those with secondary cancer is clearly becoming a more recognised need as recently Breast Cancer Care set up a secondary cancer support group locally and employed a therapist to moderate it. Although the inaugural meeting had an excellent attendance numbers have fallen off for the next two meetings and it will be interesting to see if this improves with time and how they plan to handle the difficult issues surrounding group member death.