The backache began in January 2023: I went to my GP and red flagged that I had had breast cancer (due to METUPUK infographics I knew of the warning signs), but I wasn’t referred for a scan. It was treated like standard backache perhaps from stress, as I was already off-sick from work due to stress, exhaustion and PTSD.
Later in February I passed out from something popping in my back. I ended up in A&E at Wrexham Maelor, and again mentioned the red flags, had an X-ray and was told it wasn’t cancer and to carry on with pain relief and physio. It got progressively worse, and I attended my GP twice more, as I was becoming less and less able to walk, sleep and function.
Eventually in July, my GP gave me a blood test, and this sent me straight to A&E (high inflammation and high calcium). By now I could barely walk and was very unwell due to the levels of calcium in my blood. After several days of waiting in the corridor of A&E, scans concluded I had widespread metastatic breast cancer (MBC) throughout my skeleton (including compression fractures in vertebrae and cauda equina), lungs and liver.
I underwent emergency radiotherapy to my sacrum and L3 at Glan Clwyd Hospital. I was at Wrexham Maelor for a month, bedbound for the majority and unable to get myself to the toilet or even feed myself at times. I had to learn to walk again with a Zimmer frame, (can now only do so with crutches for a short distance), and am now severely disabled, needing equipment at home. Even sitting and standing is a huge effort for my body and every day it is very hard to even get up and dressed. I was so lucky before in that I was always very physically able.
Due to my sudden and drastic change in circumstances, I will have to retire from work via ill health, I have had my driving licence taken off me, and lost my independence, as well as my mobility and sense of self. I can no longer enjoy walks in nature and getting to the wilder places that make me so happy, let alone helping out at home or with the care of elderly relatives like I was capable of. I could never imagine this happening when I have always been an active healthy person, but I realise now how indiscriminate cancer truly is.
I would not wish such a scenario on anybody else and that is one reason why I want to volunteer for METUPUK. Had I been listened to by my GP in the first instance and by A&E, I believe I would not have been so advanced in my prognosis with the resulting permanent damage resulting in life-changing disability and dire prognosis. I also consider why somebody like me who had a relatively large tumour post neo-adjuvant chemo and then surgery, did not have a full body scan, and/or blood tests, but was only followed up by annual mammograms.
My breasts are still clear now even with widespread disease throughout the rest of my body, so clearly mammograms alone are insufficient. I also have very dense small breasts so that may explain why the primary cancer was much larger than it appeared initially.
My experience of breast cancer diagnosis and all the fallout from that has been devastating. I wanted to have children, but the attempt of fertility preservation was poor in my opinion and I felt let down in many aspects of my care, be it IVF or psychological support, or ongoing care in terms of awareness of cancer return and any monitoring.
I want a better standard of care for patients after my experience. Having had a personal insight into what female breast cancer patients go through, I am desperate to improve things.
It has been shocking, the delays and errors making it an extremely traumatic situation, and the discrepancies and life-changing consequences are personally heart breaking to me and seem more common than not.
I face now leaving my partner alone, without a partner or child, dealing with everything alone as his family are far away in Poland. I cannot bear thinking of him and how he will cope, and I would also like to improve support for partners of patients in this difficult situation.
I am eternally grateful for the advocacy of METUPUK and for everything they strive for.
Who Really Cares?
Ceirios Davies
Instagram @breastcancerchat_I_am_still-me