Cancer 44

Posted on May 25, 2023     Leave a Comment

I got angry today and swore at someone on the telephone. I don’t regret it. He really got to me. I do not normally experience high levels of stress. Having cancer is sometimes stressful of course but usually I manage perfectly well. It is the smaller troubles that sometimes get to me, like people who pull in to parking spaces instead of reversing, or the smell of coffee at breakfast or those ridiculous extending leads that people who shouldn’t have dogs because they haven’t trained them use with their untrained dogs.

As I have said before, my treatment starts soon, but there is a period we can go on holiday before it starts so we are trying to sort out where to go. One of the limiting factors regarding travel is my stoma. I need sufficient supplies to keep me going while I am away. As a relative beginner with a stoma I am frightened of running out of bags. It would not be a pretty sight, an unprotected stoma just below my left ribs oozing shit at unpredictable intervals like an untrained geyser. It would make a mess of my clothing, might look unsightly in a nice restaurant and as for going swimming…?

I use around 3 bags a day. We are hoping to go away for about 10 days from Tuesday, and I do not have enough bags for the full period. I put in an order on 22 May for new supplies (or my stoma nurse did). I saw the GP had authorised the prescription on 23 May, so I assumed I would receive everything. I received everything except the bags (waste bags, anti-stick spray, dry wipes, and so on). Having not received the bags I contacted the company supplying them and it turnes out the GP authorised 10 bags instead of 10 boxes of (10) bags. A simple error, but the company neither informed me nor the GP that there was a problem. Today on the telephone to the company I tried to sort things out, but it was not to be. After going backwards and forward, with the result that the phone person left me permanently on hold (I put the phone down after 15 minutes of that) I tried the text thingy and the text person suggested that a) I contact my GP about the problem and b) that I get stoma bags from my local hospital, I was fuming. This should not be my problem. At the same time the wife phoned the GP who promised they would send the right prescription to the company today so the bags would arrive before we go away.

As the wife suggested, at one point I unsuccessfully used the argument that people are not rationed in their use of toilet paper so why was I rationed in the use of stoma bags? I could cobble the other components together to manage the stoma but not the bags themselves, which adhere to the skin surrounding the stoma forming an excellent seal so that there is no smell and no leakage. If I could predict when the stoma was going to erupt I could manage with tissues in some way, but it is not predictable. It usually goes off in the early hours, but also intermittently during the day. I have no control as there is no sphincter. It is the same for wind. It just goes off. Others can hear it because it can sound like a real fart, though there is no smell because there is a charcoal filter. The best bit is when I leave the stoma bag off for time to let the skin breathe. I always have a tissue to hand for when it activates. And it does. Especially in the early hours. I know you love to hear about this fascinating subject. Sitting there with a tissue does have similarities to the good old days when I used a toilet, sitting there in private reading a book or looking at my phone. Now I sit on a settee holding a tissue and looking at my phone.

I digress. My very high stress levels from the telephone call and the very poor responses I was receiving (the person often left long gaps because they didn’t know how to answer. Very rude – which is why I don’t regret using a swear word) were dissipated immediately on telephoning my stoma nurse who immediately sorted things out by saying she will bring me some bags tomorrow. Problem solved again by the wonderful staff at Derby hospital!

Cancer 43

Posted on May 24, 2023     Leave a Comment

0830

Another day at the hospital. If anyone needa directions to any part of this place I can probably give them in detail. Today I meet the nurse who will be administering my chemo. But that is for later. Right now I am sitting in Clinical Measurements waiting an indeterminate time for my 12 line ECG. Fortunately I have my Kindle with me as I suspect there will be a lit of waiting today. I am rereading the wartime trilogy with Guy Crouchback as the hero. Your quiz question for the day is what is the title of the trilogy?

To the book.

0850

Well that was quick. In, tabs and wires fastened, ECGed and out. I now have over two hours until my appointment. What to do when stuck in a hospital? I could write a very long blog but I don’t want to bore people too much. There is nowhere round here suitable for walking. I have my detachable keyboard which connects to my phone so I might try and work on something. Catch up later.

0945

I just went for a walk. I left the hspital, crossed the busy road and walked among the houses of the new estate. Pretty good for new houses. I then went to Aldi, bought some chicken slices and raspberries to eat while waiting (I only report the reasonably healthy stuff). Now I am sitting in the 5th floor restaurant with a placcy cup of tea looking at the ghastly view over the city. There is a hint of a hill in the distance. I wish I was there.

1400

A good long chat with the nurse responsible for my treatment. I hqve a better idea now of the future pattern of my life. The first treatment starts on 12 June. I go to the hospital to be hooked up to a picc line the day before (a line through my vein from upper arm to near the heart), and then the various drugs are administered both on 12 June in the hospital (about 4 hours sitting in a chair with a drip attached), and then going home with another drip attached for 48 hours, ie 3 days out of action. Hopefully the next six days are ok, unless I have side effects, then I need blood tests to see if I am functioning properly, and then the next treatment starts 14 days after the first. The are 6 treatments in a cycle after which I will be scanned to see if it is workibg. If so I immediately move into the next cycle. One that is complete and is still working I might take a break from treatment and we can spend a couple of months in Spain. I can’t go abroad to Europe while undergoing treatment partly because we now don’t have the reciprocal health agreements because of fucking bastard cunting Brexit and all who sail in her. These Brexit benefits never stop, do they?

After the talk with the nurse I waited nearly an hour for my blood test and finally got away from the hospital around 1330.

Cancer 42

Posted on May 23, 2023     Leave a Comment

Having a sort of end date to my life changes the way I think about things. When we don’t have such an end date we can put things off until later. We can say, ‘Yes, I would love to go there, but not yet, I have other important things to do’. I no longer have that luxury because I will be dead before long. Today we went to Leek, not a place we go to regularly, and I wondered en route if it was the last time I would ever go there (not that I would be bothered). We passed the sign for Stoke, a city I have never been to, just passed through, and realised that I probably never will go there (not that I am bothered). It makes me wonder about the things I have done and the things I have not done, and the limited time I have to do things.

People often have a bucket list (not sure why it is called a bucket list, the buckets I have carried have usually had gobbo – mortar to the uninitiated- concrete, soil or water in them). They say they want to do such and such, reeling off a long list of to dos before they die. I am not like that. I have nothing that I really want to do before I die; I believe I think this because if I had such a list and didn’t achieve everything I might die unfulfilled, frustrated and unhappy. Not a way to go.

What I do think is that if we say, ‘let’s do such and such’ then we should get on with it. I have tended to think I would like to go somewhere at some point and then never get round to it. I am trying to change that so that if I decide I want something then I will get it now. I am not very good at this, it is difficult to change the habits of a lifetime, and there is not a lot I really want.

These bucket lists usually contain things such as: visit the Taj Mahal, climb Ben Nevis, visit the Giant’s Causeway (don’t bother, it is a pithering little thing. I was so disappointed), go to Paris and climb the Eiffel Tower, visit Morocco, climb Ayers’ Rock, wear a grass skirt in Tahiti – I don’t know, all sorts of things anyway. I have been wondering what I could put on my bucket list:

  • See family
  • keep driving and walking around the Peak District
  • Holiday in Scotland/Ireland/Northumberland/France/Germany/Spain
  • Write my campus novel (35,000 words in)
  • See the publication of my book, Applied Narrative Psychology (Cambridge)
  • Write my English Civil War novel (OK, 100,000 word draft, but words a little out of order)
  • Write my Wingfield Manor social history book
  • Write my Vauban book
  • Read all the books on my list (not possible, too long, keeps getting longer, will everyone stop writing books?)
  • etc

If I had this (and the rest I can’t be bothered to think about at the moment) as a bucket list and I didn’t get it finished then I would, not die disappointed because I would be dead so couldn’t be disappointed, but know I am near death disappointed. That is not for me. Forget the above. What happens, happens. To be honest I can’t see the Vauban book coming out. Anyone else want to write it?

The other kind of bucket item people have is that they have not been to certain places, and they must, simply must, get there before they die (the places I mentioned above I have been to before). I have been to some places, and I have not been to others. So what? I might have liked to go to certain countries that I will never get to now (such as New Zealand or Kazakhstan), and I have never wanted to go to other places (such as Japan or Congo). I have liked most of the countries I have been (Ukraine, Russia, Iran, USA, Spain, Bosnia, India, Chile, etc – actually this would be a long list), and I have not liked others (China, Italy – sorry, both massive over-generalisations, I have liked elements of both, though I think the food in Italy is the worst in Europe). In the end it doesn’t matter. If I had never left Derbyshire it wouldn’t matter. If I had been to every country on Earth it wouldn’t matter.

I see little point in regret or disappointment regarding what I have seen and done or not seen or done. I can list things I have never done and it does not make me feel regret. I have never:

  • Been to any Disneyland/world
  • Visited Egypt
  • Climbed Ben Nevis
  • Owned a mansion
  • Been to a horse race
  • Been to a Premiership football match
  • Read any Jane Austen (I’m proud of that one)
  • Been to a West End show
  • Been in a betting shop except to once pick up a friend
  • Stabbed anyone
  • Run a 4 minute mile
  • Been to Newcastle
  • Owned a Playstaion, Wii or X-Box (or whatever they are. My limit is Doom 1)
  • Known how to use a washing machine properly
  • Been on a ride at Alton Towers

And I am not bothered if I never do them.

Je ne regret rien.

Cancer 41

Posted on May 22, 2023     Leave a Comment

I have had my first oncology appointment. The consultant was very pleasant, appears knowledgeable, and answered such questions as I had. I need some further tests, particularly in relation to my dodgy heart, but I hope to start chemo treatment very soon. I had hoped they might say I can take a pilll every week and there will be no side effects, but unfortunately that is not the case. I will be on a fortnightly cycle. I will have a line in position throughout my treatment (which may last for life) which goes from my upper arm to just above my heart. On Day 1 I will be in hospital on a drip through this line. Days 2 and 3 I will be at home still being fed through the line. There are variousside effects that I may or may not experience, the worst probably being diarrhoea, which can be problematic with a stoma. Imagine having diarrhoea into a small bag that needs to be carefully detached every hour without spillage and another bag put in place quickly so that there aren’t further uncontrollable leakages (no sphincter for a stoma!). Fortunately diarrhoea treatment is available.

One of my worries was that more tumours may have grown since I was last scanned just after my operation. Fortunately the treatment for such growths is the same chemo I will be receiving anyway, so yah boo to current lumps.

If the first treatment doesn’t work there are other options.

My next appointment is Wednesday, when I will have my heart checked, my bloods taken, and I will meet the nurse who will administer the treatment. Hopefully I will also get a scan.

If the treatment does work the median survival time is 24-30 months, which means 50% of people die within a couple of years. As an optimist it means that 50% of people are still alive after a couple of years. I intend to be and to stay positive as much as possible. It does mean I am unlikely to be around for more than one more general election and I am extremely unlikely to see the UK rejoin the EU, but I can hope for the future of other people.

Cancer 40

Posted on May 21, 2023     Leave a Comment

It is the big day tomorrow. My first oncology appointment. It is hard to know what to think, and my feelings are contradictory. For all my attempts at rationalising the experience of dying of cancer I feel at times that my resilience is being battered and is in danger of breaking.

While I have no idea what will be said or discussed at the meeting tomorrow, I do run possibilities through my mind because my brain gives me no choice. I look at the worst case scenario; “The cancer is so advanced you have days/weeks to live,” and I look at the best case scenario, “We have very efffective treatments for this form of cancer which means you can live a nearly complete life for years to come.” I suspect the reality will be somewhere in between the two, though there is another worst case scenario, “You have a significant growth but another operation can deal with this.” I don’t want another operation. The last one nearly killed me. The problem is, if it is suggested that either I have the operation with a significant chance of a prolonged life versus no operation and death within weeks I think I am daft enough to choose the operation, even though the effects of the last operation are still to the forefront of memory.

I can feel all sorts in my abdomen, but I have no idea whether I am feeling cancerous tumours, the after-effects of the operation (abdominal muscle still recovering), the impact of a bad diet (I have eaten most of a bacon joint over the weekend and cake), the novelty of the stoma (you don’t need details), or just an over-active neurotic imagination creating pain and unease where there does not need to be pain and unease.

I still have no fear of death, only of dying. The difference between when I was still seriously ill from the operation and now is that I can more clearly see the things I would like to do while I am alive. I realise that once I am dead this will be irrelevant but I am not dead yet.

Orwell was right when he discussed doublethink. I would like to extend this to doublefeel. It is quite amazing how two or more entirely contradictory thoughts or feelings can be happening in my head simultaneously. I have experienced this before under normal circumstances, but the intensity when it is life or death is quite brilliant. It is the supernova of the brain world. At the same time I am optimistic and pessimistic. I am sad and happy. I am looking forward and I am looking back. I am planning my next book and I am planning my funeral.

In the end, there is little point in me fretting about tomorrow, but that is what we do isn’t it? Something important is happening so it tends to focus the mind, sometimes constructively, often not. The best thing I can do today is to get outside and enjoy the sunny weather. Perhaps go for a short walk (there are no longer ones), eat some nice food (or any food – that has always been part of the problem), go for a drive, read a book while sitting in the garden, or whatever I want.

Margaret Mitchell, said that ‘Gone with the Wind’ was about survival, about how some people can live through catastrophe. She asked what it was that enabled some people to survive terrible circumstances and others didn’t. She said that survivors would call the ability to survive ‘gumption’ and that her book was about those who had gumption and those who didn’t. I believe I have gumption, even though my thoughts and feelings are all over the place at the moment.

Here’s to gumption! I hope it survives in me after tomorrow. After all, tomorrow is another day.

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