In today’s Community News Blog, we’re kicking off Prostate cancer awareness month and our new “Let’s talk about treatment” series. This series will feature stories from members of the Online Community around what their treatment experience was like. Firstly, we have Roger, known as Pozthinker on the Online Community cancer forum. Roger was diagnosed with prostate cancer in 2011. They’re here to talk about zoladex injections and managing their long-term symptoms. Zoladex is a type of hormone therapy. It is also known as Goserelin. People might have it as a treatment for breast or prostate cancer.
I was first diagnosed with prostate cancer in 2011, the year I was 66. (Yes, I'm 75 now.) I first opted for radiotherapy, but I was unable to hold my water. However, I was able to stay with the radiotherapy department, and have had hormone therapy (zoladex) injections about every 18 months since. From the start, I felt more nervous - even panicky sometimes - than I do normally, but this eased and became more manageable as time passed.
I have two injections within a very short period of time, a few days prior to which I have a PSA test. As my consultant is ok with my PSA levels reaching up to 10, I don't usually need any more for a good 18 months or so. As I don't have any noticeable side-effects, I prefer to stay with the injections rather than have tablets, for now at least. In the early days, I would often feel very nervous, even scared. This used to worry me, as it is not how I see myself at all. The hormone therapy has also affected my memory, which is very patchy at times. In the early days, I worried that this might be a symptom of dementia, but my consultant assured me it was down to the zoladex. It is one reason I try to write up my poetry blogs as they help to keep my thought processes in reasonable shape.
"I have learned to take it all in my stride."
Missing out on many happy memories is upsetting, but I have learned to take it all in my stride. I always explain to friends why I cannot remember whatever memories they may be inviting me to revisit. Most people are very understanding, but a few seem to take it personally; their problem, not mine. Many people hate talking about illness, but I find that it helps. No one likes a whinger so I try to sound as positive as I can. I even invite them to share any amusing (in hindsight) experiences, just as I do with my perceptive (pitch) deafness and mobility problems due to a leg injury incurred by a bad fall the same year as I was diagnosed with the prostate cancer.
So, how do I manage? OK(ish) on some days, less so on others (especially after nights of very broken sleep down to the cancer.) I only have a studio flat, but it is fairly spacious so I try to keep up with the housework and that is a welcome distraction. Mostly, I try to nurture a positive-thinking mindset, to which end I write up a poetry blog as often as I can. It's great creative therapy in much the same way as friends who knit or do origami, anything that we can enjoy and engage in sufficiently to distract us from Covid-19. I have also found that a change of diet helps considerably, but each to his or her own on that front. I avoid dairy foods as much as possible, go for plant-based options, and drink a lot of Soya milk. I had heard that root ginger is good for prostate cancer, so I drink a lot of root ginger tea and/or non-alcoholic root ginger beer. Ginger is also known to aid digestion, and it seems to help there too. I rarely get constipated now, as was more often the case when I had a meat and dairy diet. Oh, and I also find that four or five bananas a day helps keep my stress levels from going through the roof.
"Mostly, I try to nurture a positive-thinking mindset, to which end I write up a poetry blog as often as I can."
In latter years, I have increasingly had to get up more often during the night to urinate. I have recently been prescribed a combination of a mirabegron and tamsulosin pills (once a day, with breakfast); these help more often than not, but not always. They seem to be more effective on days when I go for a long-ish walk, but a bad foot and the Covid-19 situation means I do not get out and about as much as I would in normal times. Living alone, as I do, can be lonely as well as claustrophobic at times. While (perceptive) deafness can make chatting on the phone quite stressful, I keep in touch with friends by email, and that helps. (I am not good with video calls, so avoid them.) My best friend is in my "support bubble” but he’s worked from home through the pandemic, so I see a lot less of him as he does not live nearby.
On the whole, I avoid alcohol, although a small glass of red wine at lunchtimes often helps me through the day and/or the occasional sip of brandy if I get chesty. So far, so good in so far as I have no coronavirus symptoms. I did have a hacking cough that kept me awake all one night back in January last year, before there was any talk of a pandemic, but put it down to 'flu and it soon passed. Later, I was tested for Covid-19 by way of participating in a UCLH-Camden survey, and continue to submit information via an on-line form each week.
We’d like to thank Roger for sharing their story with us. If you’re affected by prostate cancer, you can find support in our “Prostate cancer” group on the Online Community. You can also find Roger’s poetry on their blog.
Would you like to take part in the “Let’s talk about treatment” series, and share your experiences? You can email the Community team at community@macmillan.org.uk to let us know you’d like to be involved.
