I gave a talk last Thursday, at the launch of a new group which I have been helping to develop from an existing Breast Cancer Support Group. My part was to illustrate how all cancer patients need support, irrespective of their prognosis or type of cancer, and told my personal story. It was the first time I had spoken the words Anal Cancer out loud, and I told them about the refusals of support based on the 'good' clinical prognosis - that they should take into account a patient's support system and make sure they get the best advice, not just medical. It seemed to go down well, and many of the Cancer Nurses are going to come to the group. We are now called the 'Hertfordshire Cancer Support Group for Women' - and the colorectal patient features very highly! (Can't think why ....!). It's very brave of the breast cancer ladies, who've been running it for 12+ years, and it was quite traumatic to speak on their, and my own, behalf, but I think it is well worth it. I'm going to write about it somewhere within Macmillan's media, so watch out for it. This is an excerpt: "I believe my story represents many women, whose lives and possibly relationships too, are changed through a cancer diagnosis, and whose type of cancer is less common, or has a ‘good prognosis’ clinically and therefore are not offered support. I hope that in its telling, it will enable you as the professionals to change how such patients are treated, and to look at the wider picture of their support network and circumstances that may affect their clinical outcome.
"At our recent meeting with some of the Cancer Nurse Specialists it was pointed out that our group would be particularly helpful for rarer cancers, such as endometrial for example. I am speaking as a patient who has experienced a rarer cancer. I was diagnosed in May 2007, with Anal Cancer. I then had little experience of cancer, and as her sole parent I was frightened not for me but for my 12 year old daughter.
I was just finishing a University degree, I had hoped to go into teaching, but the diagnosis halted all my plans. I had to wait for 9 weeks after diagnosis until my treatment started, and during that time I was unable to go to work, or socialise, due to pain and the constant urge to ‘go’ caused by the tumour. This left me very isolated at home with noone to talk to about my fears. I had a limited support network - I had lost my mum to Alzheimers, and she had died in the December, 5 months before. When I went for my first CT scan I wept, I had had to miss the scattering of mum’s ashes and I hadn’t yet told the family of my cancer. We were already a family in grief and I felt very alone.
Searching for support, I left a message on the Breast Cancer Support Group answerphone. I was so relieved when I received a call from them, who listened and really understood. Subsequently she phoned me again to say that the committee had unanimously agreed that I ‘was a woman living with cancer’ and should be able to come to the group.
"Apart from the loneliness, and the fear for the future, the financial implications also caused me huge anxiety. I didn’t qualify for any financial support, and had to use my small inheritance to pay for all our living expenses for over a year, until I could return to work. I had been an independent woman, changing career, but with the cancer came a loss of confidence and self esteem, and the loss of the ability to care for myself or my daughter for the 2 months treatment and struggled afterwards for months too. .....
"During my treatment I was referred twice by nursing staff to Macmillan and twice I was refused, as my prognosis ‘was too good, I wasn’t ill enough’. I was told I could use a Macmillan centre, but an hours drive away, it was impractical with the fatigue, side effects and distance.
"I understand now that my prognosis was better than some, but I experienced the same anxiety and uncertainty, and almost stopped my treatment due to extreme distress. The effect of what seemed constant dead-ends when I tried to ask for help, was to make me feel like a fraud – that my feelings about my cancer weren’t valid, that I didn’t somehow ‘belong’ or deserve to be heard in the same way as perhaps a bowel cancer or breast cancer patient."
The message was that there should be far more resources for all cancers, not only the most common, and that our group was a step in the right direction and should be supported by the clinicians.
