I had a lot of questions , ranging from the wider ‘why has this happened to me’ through to more practical matters such as whether I could exercise during treatment and what to do if the side effects were bad. My advice would be to always ask questions during consultant appointments and make use of the Clinical Nurse Specialist team who in my hospital were available during office hours Monday-Friday. The consultant may not always be able to clear up all questions as in many cases there are no absolute answers, but don’t let this be a barrier to asking. Another tip is to have someone with you at consultant appointments who can take notes. A lot of information is given out quickly and I found I was concentrating hard on the questions I wanted to ask. My wife always came with me and we found her notes were useful memory joggers when we were back at home.
Coping with the period between diagnosis and the start of treatment was a challenge. For me, the wait was 20 days and my main feeling during this time was wanting to get started with treatment as quickly as I could. The best thing to do is keep up with normal life as much as possible. I continued working right up to the day I was called in to the hospital to begin treatment. This wasn’t always easy as I didn’t feel great much of the time so I worked from home a lot, particularly when the probable treatment day got closer. Being off work for a prolonged period was something that worried me, but I’m lucky to have a flexible boss and a good company sick pay policy, and at the end of the day health comes first.
I have always been a reasonably fit person so the thought of months where I wouldn’t be able to do much exercise was not appealing. For this reason, I tried to keep up a routine of exercise pre-treatment even though on many days I didn’t feel much like doing it. I enjoy cycling most of all because it allows me to leave stresses behind and enjoy the fresh air outdoors. Unfortunately I found the cancer had robbed me of so much of my fitness over a short period that cycling was no longer possible and I didn’t want to run the risk of expiring down some country lane. Instead, I replaced the cycling with long walks, something that had in fact been happening surreptitiously for some time. I think from a psychological perspective my brain knew my body was struggling but wasn’t prepared to acknowledge the reason head-on. I decided each walk would be a strike against the cancer as would each press-up at home. This might seem a cliched approach to take, but it helped reinforce a positive mental attitude which appeared to me to be a good thing to try in these circumstances.
Medication in the form of steroids and an anti-gout pill began six days before the commencement of treatment. Taking pills became a big part of my life and daily routine during chemotherapy-I took my first one on 21st November 2019 and the last one on 26th April 2020, a minimum of 4 per day. The list of potential side effects from steroids is truly endless, amongst them being disrupted sleep patterns. Despite this, I had the first unbroken night’s sleep since the middle of August after taking the first pill and my stomach felt better too, so I banked that even if it only lasted one night. When I relayed this story to my consultant she seemed pleased and told me the pills were obviously working. This was the first time in a long time I actually felt a bit better.
My main mantra during these days of waiting and preparation was to focus on the positives and to make sure those around me did too. Equally important as I found later in the process is to concentrate on things you can control and not worry about those you can’t. This became particularly useful when confronting the frustrations of not being able to work or take much exercise. I persuaded my wife to go to her annual November meet-up in London with friends from Spain even though she told me she didn’t want to go as thought she was abandoning me. She always enjoys that weekend and it is an important fixture on her annual calendar, so I was determined she wasn’t going to miss it on my account. Our daughter hadn’t really said much since we told her about my diagnosis, but I made sure I was available to ferry her to parties, to the cinema and meetings with friends. Shortly before treatment started we discovered a van selling the best take-away pizzas we have in our area, ironically just at the point where dietary advice was warning me off take-away food. The pizzas were so good we decided to carve out an exemption for them from the dietary recommendations and they became a semi-regular treat once the chemotherapy was underway.
