Cancer 141
Posted on September 11, 2024 Leave a Comment
I am abroad! After my 25th round of chemo I have taken a six week break, which means I am going to be poison free until towards the end of October. I have learned how to flush my lines so that I don’t need the district nurse for a few weeks. My medical bags are enormous, as I have to travel with heart drugs, stoma equipment, line flushing equipment (6 syringes each time), and miscellaneous drugs to keep me pain free, diarrhoea free and sickness free, etc.
It would all be a bit much for an aeroplane but I am thinking about that for the future.
The ferry from Harwich was horrible. I think my seasickness tablets might interact badly with the rest of them, as I have been struggling a little with food (a new concept for me). I cannot struggle with food in Germany, cuisine central of the world!
We are currently in a small town in Lower Saxony, planning to arrive at the coast tomorrow. Driving is much more tiring than it used to be, 200-250 miles a day seems to be my limit. Pathetic really, when my record is 1500 miles in 24 hours, from Sarajevo back, when also my brakes didn’t work. No one needed brakes in Bosnia then though.
We are away for three weeks, back at the beginning of September. This includes two weeks in a house on the island of Rugen, not far from Peenemunde….
Cancer 140
Posted on September 3, 2024 Leave a Comment
My common Tuesday, sitting in a chair that is too small in a room with lots of ill people being pumped full of poison. It is afternoon, so as usual, by this stage, I am starting to feel ill, but I try not to show it. I don’t want to endanger my treatment, particularly the pumping through of the poisons at the fastest rate possible. In any case, I will only feel rough tonight; by tomorrow, I should be fine.
The 25th round. We like to use numbers in an anniversarial (is that a word?) manner. Twenty-five is somehow more significant than 24 or 26. This is my last treatment until towards the end of October. I am having my break, we are getting away to Germany. We have just booked our accommodation – there is no real advanced booking now; my treatment is too unpredictable.
The consultant drew my death line on Friday. This was a piece of paper with a line bisected by a mark indicating when my first-line treatment will fail, which it will at some point. The next part of the line was my second-line treatment. When that fails, there is no more treatment, so that is it.
It is a bit of a shame really. I have been feeling better for the last few months, which has made me want to live. I sometimes feel so well (this is relative remember) that I forget I have cancer until I undo my shirt and see all the bits and pieces hanging off and out. It disappoints me. While I remain unafraid of death I don’t want to die. I am enjoying my life and would like it to continue as long as possible, at least while I feel well.
When I say I feel well I am excluding the constant tiredness but inability to sleep, the straining hernia, the sore stoma, the itchy skin, the inability to walk far and so on, but I have lived with these for so long I have forgotten what good health means.
It is all a bit odd really. As we get older we all know that we are going to die (perhaps deluded religious people don’t worry because they think their existence will continue in their heaven), but we don’t know when. Even with my cancer, though I am aware I should die in the next few months (statistically Jan to June next year) or a bit longer (optimistically), I do not know exactly when, but I feel that it has a profound effect on my life, as though I am waiting to die, when I am not, I think….
Cancer 139
Posted on August 29, 2024 Leave a Comment
I am the last of my childhood nuclear family. We were two parents, one son and one daughter; it was pretty traditional. My parents died old, my dad at 93, my mum at 85, so no complaints there, but my sister Helen died last year of cancer at 63. When you are in your 60s, 63 is not very old; it is a premature death. Coping with my own diagnosis of cancer and operation, I failed to mourn the loss of my sister, who died at the same time. I have wondered why but put it down to my own troubles. Recently, I have found myself grieving a little, I don’t think it is because of Helen but the loss of my original nuclear family as a whole.
The family was the core of my existence for the first 20 years of my life. We lived together, ate together, went on holiday together, and watched telly together. Like most people, I gradually extended my life outside with friends and eventually moved out to develop my own relationships, and so on. All perfectly normal and nothing to shout about, so why only now am I grieving for the loss of this nuclear family? Have I only just realised its importance, its centrality to growing up, to me being who I am? I had a happy childhood, idyllic in memory. I have never thought otherwise. So what has changed?
Perhaps it is me. I have developed through the course of my illness. While at the start, I could only focus on my death, it has now gone on so long (sorry for boring you with so many blogs over so long a time) that my mind has naturally started to reflect on other things. I generally feel reasonably well, so I can look backwards in new ways, I can risk the potential psychological dangers of reflection.
Perhaps the bigger question is why I am not grieving my sister and instead grieving my nuclear family. Is it the relationship (or lack of) that I had with her? Is it the timing? Is it her dying of that dreaded disease cancer? I don’t know, but the mind works in complicated ways.
I am due to meet the consultant tomorrow, the actual consultant. A rare experience. I am hoping for two things, that I am well enough to have treatment next week – my 25th as you are asking. I should celebrate and perhaps get a badge, as you do when donating blood – and that I can then take a break from treatment to go on holiday to Germany. The main problem is that my skin infection is back. It was severe enough to delay treatment a few months ago. I am busy scrubbing my face and applying udder cream to improve my look and hope no one notices. It is not as bad as it was, but it is worse because large parts of my body itch terribly, and inevitably, I can’t stop scratching. I don’t like delays in my treatment.
Cancer 138
Posted on August 20, 2024 Leave a Comment
I had dreams last night about both my PhD supervisor, Ian, and my sister, Helen. Both are dead. Ian had some sort of super space age weapon and was using it. Helen was involved in something about a route that kept closing. Dreams are generally meaningless to those who are told about them, but meaningful to the dreamer at the time. I know they were detailed, long and fascinating while I was dreaming, but I have already forgotten most of the details, so they don’t have much meaning. In the past I often had long film-like vivid dreams, complex stories, ones that I could often influence as I lay asleep. Sometimes I could wake up, go to the toilet, go back to bed and restart the same dream. It was cheaper entertainment than Amazon Prime.
It all stopped when I had my operation. Having your guts chopped up does wonders for sleep. I had heard that having an anaesthetic could significantly impact sleep for a long period, but I didn’t realise it would destroy my dreams for more than a year. It is only recently that I have started to have my vivid dreams again, the long and – to me – interesting stories about different things. Unfortunately, I am not remembering them well. This facility is starting to come back to me, so I am hopeful for the future.
Hopeful for the future. Hmm. I have been feeling quite well recently, and quite optimistic about the world. Then I took my shirt off and noted the hole in my chest with a tube coming out of it, the hole where my colon ended, covered by a bag, and the elastic tube around my ‘waist’ holding my hernia together and realised I should not have removed my shirt!
Cancer 137
Posted on August 15, 2024 1 Comment
The Combined Day Unit (CDU) where I receive my treatment flooded on Tuesday, so all appointments were cancelled. I assumed that I would miss the treatment, that my timetable for the next few weeks would become muddled, and that it may well delay my treatment break when we are hoping to get away on holiday. Norther Germany as you are asking. Fortunately, I received a telephone call yesterday, saying that my treatment was rescheduled to today, Thursday, which means cancelling our weekend with the kids, as I will not have the bottle removed until Saturday.
It is all excitement with cancer treatment. The main rule I have learned is not to make solid advanced plans, as they will often have to be cancelled. Booking accommodation and ferries has cost us money in the past, only to have to cancel them with no refund—bear in mind I cannot easily get travel insurance to cover these things. When staring death in the face, insurance companies run a mile.
Talking of death, I don’t seem to be very good at doing it. I feel healthier now than at any time since my diagnosis. I know I am not really, I am probably just more used to feeling like this, but leave me in my dream world. My plans for the future are expanding. Not only am I hoping to achieve date-related milestones, but I have at least three novels to write. I am just embarking on an advanced novel writing course which should see me complete a draft of one of these novels. I am burning to get on to the second one, which is resting at 40,000 words, and I think will be easier to complete in a meaningful way. I have no idea whether any of these novels will be published in my lifetime. It doesn’t matter, though it would be nice. My only ambition as a teenager was to write a book. I have done that 10 times over, but I don’t have a novel to my name. Perhaps I should rewrite these blogs.
Dr Nigel Hunt 