Many of you will be aware of the impact Covid-19 had on cancer services.
Here, one of our Chandler’s Ford clients, Tony, shares his account of living with cancer during lockdown and what helped him to cope with his radiotherapy treatment for prostate cancer…
I was first diagnosed with prostate cancer in 2013 and was ‘watchfully waiting’ until 2020 when my PSA (a blood test to help detect prostate cancer) rose to 7.7 (anything above 5 gets investigated). I was seen by my consultant in January 2021 after Covid-19 slowed my referral. Following an MRI, PET (a scan to see if the cancer has spread) and biopsy, I was diagnosed and put on hormone treatment for three months to try and reduce the PSA count.
Suddenly, I found myself in unknown territory, feeling out of control. I had no idea what might happen and felt fearful; slipping between denial and acceptance. There was immediately much to consider: Would I need an operation? Had it spread? If I needed hormone or radiotherapy treatment over a long period, would there be side effects?
In May, I was told that I’d need a course of 20 radiotherapy treatments. As my hospital treatment began, my sister likened it to arriving at an airport. As a passenger, arriving and checking-in can be the most stressful part, whereas it’s an everyday experience for those who work there. The initial reception sets you up for what happens next.
I knew at this point I would appreciate some support, but finding the right type also proved to be quite overwhelming. Initially, the shock of my diagnosis sent me into overdrive. I found myself gathering indigestible amounts of information from the internet as I struggled to come to terms with the situation. Friends told me to maintain a positive mental attitude, but did that mean I had to fight, or just come to terms with it? Should I go to one of the big national charities, or try to find a local and more specialist one? I found it helpful to think about what I really needed from support, and also found it really interesting that some charities were reporting, ‘compassion fatigue’ as a result of Covid-19, which could mean this would reduce the care and attention I might usually receive from friends. There’s plenty of help out there, but early on you’re not really sure what you need.
One achievement at that time was to decide the future contents of my diet, aiming to eliminate those that might hinder treatment, like sugar and dairy, and introduce more of those which might help – like vegetables, seeds and fats. I knew that I would need to get my body and mind in better shape to more than just survive the treatment.
Because Covid-19 prevented us from meeting face-to-face, I found writing updates to friends incredibly useful, and the fear of the unknown eased as friends opened up about their own experiences and gave me their thoughts on how to maintain a positive mental attitude. Over time, it began to work the other way, too, as in my updates I strived to prepare and inform those (who were interested to know), about what they might encounter in the future.
As a man living on my own, I also found companionship in a local meet-up group with another man diagnosed with prostate cancer.
I live in Chandler’s Ford and was driving through the centre of town one day when I spotted the Wessex Cancer Trust shop. I Googled the charity and got in touch with Phil, the charity’s Wellbeing Coordinator, who talked me through what the charity could offer me and what I could expect from my experience with them. I was attracted by the local, holistic approach offered by Wessex Cancer Trust, which included befriending, counselling, nutrition, massage and Yoga, and that everything could be tailored to my needs. I was gobsmacked by how friendly everyone was, and that was incredibly helpful.
The radiotherapy treatment was gruelling and exhausting. It felt like hanging up my brain and submitting to a higher authority, and watching the process reveals a host of other thoughts and feelings. The body’s response can be quite violent – a bit like a good Saturday night curry, and then some. It’s best to be prepared!
I found that a good book was the main pre-requisite to withstand all the starts and stops, and I read 570 pages of a 1200-page book on the days I was waiting for treatment. Sometimes I submitted to the system and tried to disassociate my mind, and sometimes I let myself be more aware of the process.
Consistency is the key, but it’s not always easy to achieve. Some side effects appear as treatment is culminated, so extends beyond the end of treatment. In anticipation of completion, Imodium and Paracetamol were my drugs of choice. Cystitis is another possibility, with cranberry juice the suggested remedy. Despite an early warning to my GP surgery, I found myself suffering a sleepless night and eventually calling 111 where I was prescribed antibiotics.
My last treatment was on 9th October, but currently I can’t feel too relieved about the end of this stage because it continues to upset my stomach, making logistics crucial for the next few weeks. So celebrations are on-hold as I let my body catch up.
Staying in touch with friends has been a lifeline. Recently, I appreciated a, ‘how it goes it’ email which turned into a meet-up of blokes I’ve known for 60 years.
It’s natural to be scared of the unknown, but as a result of the support I’ve received from Wessex Cancer Trust, I think I’m holding up pretty well. My experiences have made me want to give back and raise awareness, and encourage others to make lifestyle changes. I’ll see my oncologist before the end of the year to see if I’ve got the all-clear, but for now I feel better than I did about being able to handle what this journey throws at me.
As I enter the recovery phase, I see that this is an ongoing process, and that – like Covid-19, cancer is something I have to learn to live with.