There was no history of cancer in Gen’s family, so when she attended a routine mammogram in September 2017, the last thing she expected was to receive a letter a week later, calling her into hospital. A biopsy confirmed that she had triple negative breast cancer – an aggressive type of cancer, which is not commonly found in women over 40.
The cancer needed to be dealt with quickly, so barely two months after diagnosis Gen had a lumpectomy on her right breast and the lymph nodes removed from under her right arm. She found it hard to cope with the speed at which decisions and actions were taken.
“Everything happened so quickly, my feet didn’t touch the ground. I couldn’t get my head around it, even now I am still trying to process what I’ve been through. I didn’t cope well and the build-up to the surgery was very scary. I had two adult children who were very upset and crying, which I feel very guilty about. I didn’t deal with it at all. My oncologist just said I was unlucky. I was incredulous. I’m grateful though that they acted so quickly.
“Although the doctors were confident that they had got all the cancer, in January 2018, they started me on a harsh regime of chemotherapy, with one session every three weeks for three months. I found the treatment extremely traumatic and intrusive. My veins collapsed after the first chemo session, so I agreed to have a PICC line inserted.
“I had to have weekly injections in my stomach to build up my bone marrow, which the chemo had destroyed. This caused terrible side effects, with severe back pain, diarrhoea and skin infection. I became so poorly that I ended up in A&E and had to have a magnesium transplant.”
The chemo was followed by intensive radiotherapy treatment, which left her with sunburn and feeling exhausted, and then further chemo. Treatment finally ended for Gen in 2022, although she still has yearly check-ups, which are not without anxiety – in her first year of remissions, she had a scare, which turned out to be scar tissue.
Gen has a positive experience of working while going through treatment. She’s a social worker with Kent County Council and is the sole breadwinner in her household.
“Whatever I wanted, my employers put in place,” recalls Gen. “After treatment I returned to work on a phased return. My manager was brilliant whenever I struggled. I was given a light case load and I could just ring her to say I was feeling poorly.
Gen, who is now 60, says she has really struggled since being in remission. “There’s a lot of misunderstanding about being in remission. You are actually not cured, you are just in remission. My mother keeps on saying, now that you are cleared, why aren’t you better? The recurrence rate is quite high. So I think it’s better to expect it to return.”
“Even though the chemo may have killed the cancer cells, it has broken me physically. I’ve never recovered from it. I get a really dry mouth, neuropathy, fatigue, tummy troubles and I know that the chemo has caused this. Yet people expect you to walk up mountains. And then there is the expectation, as the years go by, that you are fully recovered. That’s one of the reasons I joined Cancer Coach (in November 2022) – to find out if other people felt the same as I did. Cancer Coach popped up on Facebook and I decided to give it a go.
“Another reason I joined was to understand the reaction from my mother, who I have always been very close to. She was nearly 82 when I was diagnosed and from the outset she refused to acknowledge my cancer. She wouldn’t talk about it and only once did she come to treatment with me. Even then she spent her whole time talking to other people and not sitting with me. I couldn’t believe it.
“I lost all my hair, including my eyebrows because of the treatment, so I bought myself a wig. If my mother came to my house and I didn’t have my wig on, she wouldn’t look at me. She would put her hand up in front of my face. She minimised my cancer, but I didn’t want it minimised. I said it’s not a cold or a broken leg, it’s cancer.
“When I joined my Cancer Coach group last year, a number of other women in the group had similar experiences and feelings to me. We all felt that the expectation is that you are all better. But how can you be? You are older, so how can your body regenerate. The women I spoke to were brilliant and it was good to hear their stories, some of which were much worse than mine. There were other women who had experienced triple negative cancer, so we had a lot in common. This really helped me.
“I’m a great believer in sharing one’s experiences – it definitely helps to talk to someone who has been through cancer and who therefore understands what you are feeling.
“I would definitely recommend Cancer Coach. It was a fantastic experience and confirmed that my feelings were normal. All six of us in the group felt the same way.”
Cancer Coach peer support groups are run by Cancer Support UK for people with a previous primary cancer diagnosis, who have finished their cancer treatment and need emotional support. The groups are split into weekly sessions over six weeks and are carried out free of charge by telephone or over a video call. Each group is facilitated by an experienced Cancer Coach who leads the group, offers support and structures the conversation.
Cancer Coach offers self-management techniques and peer support for anyone over the age of 18 who has completed treatment for cancer, regardless of whether they finished treatment a few months ago or a few years ago. To access post treatment cancer support, apply to join a Cancer Coach support group online now.