'My hearing issues caused feelings of isolation'

I had been so excited about starting a new life, recently moving to a different area to be nearer to my family after my divorce and was about to begin a new job. I’d even thought about dating again. And then, three days before the first lockdown was announced, I was diagnosed with breast cancer. I was on a family zoom call whilst we watched Boris announce the lockdown and the shock I felt was immeasurable. I really couldn’t comprehend how it might affect my treatment. At this point my type of cancer or stage was unknown, so as a family we were all distraught and fearful. Obviously contacting my consultant or his nurse was at the top of my list of priorities, but when my calls, texts, and messages went unanswered, I started to panic. After eight weeks I was so anxious that I couldn’t sleep. I wasn’t eating, and I was alone every night with no-one to hug me and make me feel safe.

Eventually one of my sons contacted a solicitor to arrange a letter of concern to Ross Hall Hospital and, in the meantime, I finally managed to speak to the Head of Medicine, telling him in no uncertain terms that I was engaging a solicitor as I had received no communication from the consultant or nurse. Magically the consultant rang an hour later to inform me that he and his team were shielding, but he had arranged to transfer my case to another consultant. The new consultant called me later – she was amazingly supportive, informing me that my biopsies were being further investigated as there were some anomalies.

After a few more weeks the results came back, I had been diagnosed with Triple Negative Breast Cancer. After googling (obviously I know that’s a bad idea, but when the entire world is in a pandemic, you don’t have much choice) I realised it has a poor prognosis and the recurrence rate is extremely high. It is also usually found in younger women of ethnic origin – I am neither, unless you consider sixty to be young.

The fear of losing my breast

One positive of the pandemic was that all medical staff had to stay in their current positions and locations, which meant my surgery was to be performed by one of the best breast surgeons in residence at a private hospital nearby. I was pleased that it would be a female surgeon too. For many women with breast cancer the greatest fear is losing their breasts. It doesn’t matter that it could be lifesaving, we identify our femininity via our breasts and hair. For me, my breasts also represented feeding  and nurturing my eight beautiful children.

My surgery was nothing short of amazing. The surgeon not only managed to remove the lump, rather than perform a mastectomy, she also reconstructed the nipple. I had minimal scarring and only one lymph node removed with no cancer involvement. However, the next leg of the journey would be the hardest.

Covid bubbles created issues for care and support

The Covid rules about mixing meant it was difficult to see family, but we tried to work around them, with each member keeping themselves locked away for chemo week. The hardest part for me was not being able to hug my baby granddaughter, she was my main reason for keeping going during the bad days. I longed to get on the floor and play with her and not being able to cuddle her hurt my heart more than I can describe. My GP prescribed antidepressants to help me get through this period.

Having to sit alone whilst having chemotherapy treatment broke me too. I almost turned back before my first session when my youngest daughter drove me to hospital, then had to leave me at the main door. The thought of having no-one to hold my hand was frightening and lonely, especially as I have hearing issues, and face masks made communication even more difficult than usual.

I was not prepared for the pain either – no-one had thought to tell me that chemotherapy not only kills cancer, but it kills all your good cells too. It can also cause damage to your nerves, which in my case affected my feet and hands, causing pain which continues to this day. Chemo affected what little hearing I had, and I became profoundly deaf.

The horrors of chemotherapy

Everyone knows that chemotherapy is horrific, I was given EC and Docetaxel which I knew meant I would lose my hair, feel nauseous and fatigued, but I wasn’t prepared for the loneliness. Going to bed every night alone except for my two dogs was the hardest part. My lovely daughter-in-law formatted an online diary so every member of the family knew when chemo week was and who was going to look after me. Everyone took turns helping with the dogs, getting my food shopping, ensuring I took my medication – especially the horrible jabs in my stomach.

I cried when my daughter cut my hair, not only due to my hair coming out in clumps, but because no child, no matter their age, should have to do that. We both wept for the loss of my thick curly hair, which had been my pride and joy. For a while afterwards my head was sore and itchy. In Scotland you can get a prescription for a free wig, so I had a bit of fun looking at all the different options. I fancied a Madonna-style high ponytail or something long and swishy but chickened out and went for something more like my own style. It felt safe and familiar, however it was too hot and itchy, so I wore scarves instead. Today I now embrace my shorter curlier style.

Life after treatment

I’m not sure exactly what I expected my life to be like after treatment. I thought I would need some downtime, the chance to grow my hair and nails and to look for work. What I didn’t expect was to feel as if I’d been dumped in a foreign place and to have no understanding of what was expected of me. I didn’t expect the peripheral neuropathy to continue, stopping me being able to walk far again. The brain fog continued as did the fatigue.

I was incredibly lucky that my cancer was caught early. Following treatment, a mammogram and an MRI scan showed no evidence of disease, so I would only need to have bisphosphonate infusions twice a year. I was told by the senior registrar to go home and enjoy my life. To say I felt deflated and confused would be a huge understatement. I left the hospital with my son who was baffled that I wasn’t jumping for joy. I was happy that the cancer was gone, of course, but had no idea what my future held. I’d been told what to do and when to do it for over a year, now I felt lost. Life after cancer leaves you with more questions than before. Why me? Will it come back? Will I ever feel normal again? Will I feel like a woman again? No one really has the answers to life after cancer because its looks different for everyone.

My life is very different now. I have two beautiful and funny granddaughters and a wonderful partner who didn't flinch when he saw my scars and, more importantly, accepts there is a very real possibility that it might come back. If it does, he will take me to a local hilltop where I can yell and shout out my frustrations. If I were to give anyone advice about life after cancer, I would tell them that there is no normal, life will always be different, but it will be your normal so accept what you can and try to live your new best life your way.

Kerry is mum to 8, all now grown and making their own way, and her grandchildren are some of her greatest joys. She isn't working just now so when not playing with her grandchildren, she can be found crocheting blankets and jumpers for them. Her hearing loss has spurred her on to learn sign language in the New Year.