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.
Cancer 136
Posted on August 10, 2024 Leave a Comment
All goes on as normal. My bloods are more or less the same as usual, with the cancer marker slightly elevated, but nothing to worry about apparently so I won’t worry. It has been between 3 and 4 for a long time, now it is between 4 and 5. my 24th treatment is authorised for next Tuesday, so I will go into the hospital, prepared as usual for a long day sitting in an uncomfortable chair with poisons pumping through me, ready to feel fine for the first couple of hours and then an increasing feeling of sickness, which will last throughout the day and night and will hopefully be reduced by Wednesday morning. I will have my bottle attached until Thursday and then be free again for the next six days, when hopefully I won’t have too many side effects other than tiredness and perhaps diarrhoea. The 24th treatment. I will then have an extra week off because of the bank holiday, then my 25th treatment, and then hopefully I will take a six week break so my body can recover a little and we can go on a proper holiday.
Life. This is it forever, or as long as the drugs keep the cancer at bay. The routine does drag when I think about it, and trying not to think about it obviously means I think about it. Along with the routine there is the stoma, which means carrying around – never forgetting – a stoma changing kit and finding somewhere to be able to make the changes. And there is the tube that comes out of my chest and has to be taped down so it doesn’t dangle too badly and get caught up where it shouldn’t.
I have a big bag of goodies when we go anywhere. There is not only the stoma kit (which is fairly complicated) but also the drugs for my heart, my permanent antibiotics, and the drugs for when things go wrong such as anti-diarrhoea tablets, anti-sickness tablets and painkillers. Not forgetting the cleaning materials, dressings, tape, and so on. It surprises me that I don’t forget things more often. I did forget my heart drugs and antibiotics when we were in Yorkshire for a couple of nights this week. It doesn’t seem to have adversely affected me, though I haven’t slept much since (2-3 hours a night).
It does get to be a drag at times. I have never been one for spending too much time dealing with my body, but now I have to. Sometimes, when I think this is forever I just want it over with. Fortunately, by over with I am more likely to mean a miraculous cure than suicide, as I remain generally optimistic (and entirely unrealistic!).
Cancer 135
Posted on July 30, 2024 Leave a Comment
Another day in the Combined Day Unit, or cancer ward. As usual I have managed to make the day not drag by reading and writing, but again as usual the strategy has gradually failed as I start to feel more sick and my head gets a little hazy.
I am now at the stage where the drip bags are nearly empty. The nurses keep resetting them for a couple of minutes at a time and I am getting anxious to be off. I arrived at the hospital seven and a half hours ago and have been sitting in this chair for five hours. It is ok when I feel fine, but not now. I am sure some of the sicky feeling is having had two cakes while sitting here. I am my own worst enemy.
There is some messiness around the entry point of my Hickman line, so before I go the sutures will be removed. That is bound to sting a little and not what I want at the end of the day.
I am now being flushed, ensuring all the drugs are in me and hopefully doing their job. Once that is finished I can have the bottle attached, two days of a nuisance, bottle attached to the tube which enters my chest. I have to be careful so as not to catch it anywhere, which rather restricts my actions.
It is also very hot in here, very uncomfortable. Still, I look around and there are several people in a worse state than me. That’s what I have to look forward to. Whoopee.
Dr Nigel Hunt 