J's story
CASC is one of several cancer peer support groups I belong to. These spaces are invaluable for sharing experiences, offering practical tips and advocating for one another. It’s fantastic that CASC now has five cafés, with plans to expand into other areas. I attend regularly to welcome newcomers and share my story, in the hope that it will support and empower others on their journeys.
I was diagnosed with cancer in June 2024. I have a rare form of lobular breast cancer, where metastatic disease spreads to the bone marrow without a clear primary tumour in the breast.
At the time, I was experiencing unmanaged diabetes and a hand tremor, and was under clinical care. My symptoms worsened until I couldn’t walk or see, and was covered in bruises. In May 2024, a blood test revealed a critically low platelet count of 14. I was admitted to hospital, where I received several platelet and blood transfusions, a CT scan and a bone marrow biopsy.
A haematology technician casually mentioned “breast cancer” – the first time anyone had spoken to me about cancer. I thought it was a mistake by overworked NHS staff. I suspected that I might have a blood cancer as my bloods were so low. Soon afterwards, I was invited in to a clinic that afternoon when I discovered I was meeting with a breast oncologist who confirmed that I had cancer and that it was incurable. I was immediately put on hormone therapy medication.
A week later, I suffered a haemorrhage and was admitted to hospital again. I was extremely unwell and placed on a general ward. It was a nightmare time. Again with repeated platelet and blood transfusions.
After discharge I continued with the medication and gradually rebuilt my strength. Determined to get fit again, I managed to return to activities such as outdoor bowling after just a few months.
In January 2025, my health deteriorated again. CT and MRI scans showed that the cancer had spread to my bones. I had hoped to start a targeted therapy, but was told I didn’t meet the NICE guidelines because of my platelet levels had not improved the previous year, within the 12 weeks of starting the hormone therapy.
The Complex Case Review Team advised me to continue as there was evidence I was still responding to treatment.
By July my situation had deteriorated which was confirmed by further MRI and CT scans. I began a treatment similar to chemotherapy called targeted therapy in tablet form, delivered in four-week cycles plus injections into each buttock that can take two minutes each to administer - a very painful process. I also have an injection to strengthen my bones.
I'm unwell with side effects for up to three weeks after treatment and have continued to struggle with these side effects. Following some difficult conversations with my consultant, I’ve now been referred to a spine clinic and physiotherapy, and prescribed local anaesthetic cream for the injection sites plus antihistamine.
I’ve learned how important it is to ask questions, research your options and have informed conversations with clinicians. I was initially told there was no alternative to my treatment, but my own research led me to an alternative drug used instead of the painful injections. I was subsequently told that a similar treatment might be available if I have a mutation, although it hasn’t yet been prescribed because my disease has not mutated. Given how stressful and upsetting this has been, I recently requested a second opinion.Unfortunately that has not changed my treatment but I was given a better understanding and given extra advice.
I am at risk of spinal cord compression at the base of my spine, which makes walking any distance difficult, and I now have a Blue Badge. The Macmillan Support team have been brilliant, supporting me with both my Blue Badge application and Attendance Allowance paperwork.
Self-care, and looking and feeling good, have been essential to my wellbeing and quality of life. I take care of my skin, hair and nails, and try products recommended by clinicians and peers. I’ve also explored complementary therapies and support, including reflexology, reiki, homeopathy and yoga. And I access counselling when I feel I need extra support. Psychological well being is as important as physical care.
There are many organisations offering free or reduced-price therapies and products, including Macmillan Support Workers and Nurses at Weston Hospital,Weston Hospice (Day Hospice), Penny Brohn, Bosom Buddies Bristol, Breast Cancer Now and Look Good Feel Better. Finding this support, alongside connecting with others who know what you’re going through, has helped me so much over the last 2 years.
My journey hasn’t been easy, but I’ve learned the importance of speaking up and advocating for myself, exploring a range of support options and spending time with people who understand.and “get it”. You don’t have to navigate it all alone.
JO - CASC group member & volunteer
