February 2024 (day 1703 since the journey started). I have an appointment at the Royal Marsden. It is my third visit and we find out if I have been selected to take part in the trial. I had been aware since my first visit that I was anaemic with a haemoglobin result of 92. The minimum figure to take part in the trials was 100. Today after three weeks on iron tablets and B12 injections, the reading slowly edged upwards. Unfortunately, it stopped at 97, so I failed to make the required standard. I have been anaemic since diagnosis, with the haemoglobin dropping slowly over time. I was devastated, the door to the last chance saloon is closed in front of me, for what I considered to be a simple manageable condition.
23rd February 2024 (day 1718): I find myself coughing up blood. It passed quickly but I thought I would talk to my GP. The doctor did not think it was a problem but advised me to go to hospital. I found myself in the ARU (acute respiratory unit) of the Royal Worcestershire Hospital. I had a CT scan and X-ray. When the duty consultant did his rounds, I was informed that I had a pulmonary embolism (blood clot,). Also there was a high probability that I had lung cancer. I very quickly told them that I had no wish for them to pursue this new potential disease. The likelihood was that the prostate cancer was going to make any lung cancer investigations pointless (when prostate cancer moves to the lungs or other parts of the body, it is still prostate cancer). The consultant was saying he thought I had a completely new primary cancer, lung cancer.
Mark in front of Merchant Navy Class P & O Lines at Toddington on the GWSR
29th April 2024 (day 1785): For the last two weeks I have been suffering from vomiting and diarrhoea, so I went to my GP. I was prescribed tablets to see if they helped. Rather strangely, the conversation shot off in a completely different direction when we started talking about future support. Being pragmatic I was aware that at some point the NHS would stop offering me treatment. They would, however, continue to provide palliative care to ensure I was pain-free and comfortable. We discussed the ReSPECT form which details the patient’s wishes ‘when the time comes.’ Did I wanted to be treated in hospital, or, providing comfort was maintained, treated at home? One section asked if I wanted CPR to be performed.
6th May 2024 (day 1792): Chris, my younger brother, and my niece from Blackpool have been visiting over the Bank Holiday weekend. We spent Sunday mowing the lawn and trimming the edges. I found it particularly frustrating as I do not have the energy to finish the task myself. Just kneeling and standing up is hard work. I know that Chris had a conversation with my other brothers after dinner. I had been sick in the restaurant and am having problems “holding down” food.
Since the start of my journey, I have kept my three brothers informed about my situation. However, the last months have been difficult. There has been no good news to give them. Early this year I had to tell them that my treatment had come to an end and that I had no realistic options left. The cancer has attacked my adrenal glands. Both glands have stopped producing the steroids and hormones that my body needs to function correctly. The most noticeable effect has been problems with blood pressure and stability when I walk. I am now on steroid tablets to alleviate the problem.
I had known from the very beginning what my prognosis was, so I should slowly work my way through the available delaying treatments, then prepare my goodbyes. Those who have read my previous articles (see below) may remember my interest in the older churches, visiting all the Anglican cathedrals. Someone suggested that perhaps it was more than an interest in the different architecture styles and maybe I had questions that needed answers. Like many people, I find myself asking what comes next. The clinicians have run out of options for maintaining my mortal body, but who is looking after my soul?
Mark Howard