In early 2019, before I even knew what my prostate did or where it was located, I had planned a short holiday in Jersey. My diagnosis, subsequent treatment and Covid meant I had to cancel plans on three occasions.
The 25th August 2022, 1171 days after starting out on another unwanted journey, found me, my brother Phil and sister-in-law Sonia at Heathrow Airport for the flight to Jersey, the fourth – and this time hopefully successful – attempt. British Airways decided to ratchet up the tension. The flight was delayed due to a late incoming aircraft and problems unloading baggage, but this proved only a minor inconvenience as it meant a longer stay in the business lounge, unlimited coffee and cake for me, champagne for Sonia and Phil. Being frequent flyers before the pandemic, we kept our status, but this will shortly lapse.
The holiday was excellent, everything that I hoped for – beautiful blue skies, temperatures in the low 20s. The shorts came out, and we did the tourist sites – Elizabeth Castle, Mont Orgueil, the German War Tunnels and Zoo. We had the benefit of some spectacular food thanks to advance planning and research by Sonia and Phil.
British Airways had a second attempt at ruining our enjoyment as we waited over an hour in the baggage area when we got back to Heathrow. Does anyone see a pattern here? They failed miserably. I completed 9 years’ service in the army, so I can claim to have been messed about by professionals!
I met another PC sufferer, a total stranger, one of the unfortunate group who started out on the curative pathway but found himself joining me on the palliative pathway after a prostatectomy some years ago. He is about to undergo chemotherapy. In his own words, “They didn’t get it all.” He spent some time on hormone therapy but came off it at one point because of side effects. What was refreshing in the frank discussion was that we both admitted to emotional issues – dark days, when the world is against us, other days when watching something on television would start an episode of crying. He has had help from St Richard’s Hospice which has a well-being service, (this requires referral from one of your medical team.) I mentioned that I visit Maggie’s when I need to talk.
I am slowly picking my way through the minefield that we all live with. For example, what do you say when introduced to someone in the support group? Earlier this year someone asked me if I had undergone a radical prostatectomy or radiotherapy. I replied, ‘Neither, I had chemotherapy.’ I could visualise the emergency exit button engaged in his mind as the conversation dried up very quickly. It’s so British – “How are you?” “I’m fine, thank you.” Nobody says, “Well, actually I had chemo 5 days ago, feel like **** and spent the evening in the toilet firing at both ends!”
I sometimes say to people I know, “Do you want the 5 second answer or have you got ten minutes to spare?” Someone I have known for over two years recently told me he was on the same medication as me, so I knew he had problems, but he had never given me any indication previously as to his status. The number of people I have talked with invariably say something like, “You look okay.” Recently on one of my volunteering jobs, where they know I have cancer, I was asked what stage I was. When I replied, “Stage 4,” out came the often heard, “You don’t look sick.” I sometimes wonder just what I am supposed to look like.
Along with rising PSA levels, now at 16.5 (November 8th.), a recent scan showed that at least 3 lymph nodes were active. Worst case: one had gone from 16mm to 28mm. As I was still basically asymptomatic, Lisa Capaldi, my consultant oncologist, suggested I wait a few months and get every last benefit from the abiraterone hormone treatment, which is, after all, still controlling some of the cancer in my lymph nodes.
– Mark Howard