Herry's Health 2022 - Colon Cancer and Chemo
I began my chemo regime of eight cycles of three-weekly torture on 15th December 2021. The side-effcts were horrendous, and I stopped taking chemo the end of the 2nd cycle on 10th January, although some of be effects lasted well beyond that date.
I wrote a note to the oncology team in Winchester and the nurses in Basingstoke on 18th January, updated on 25th, as follows:
I hope this is helpful to the team and others and explains why I’m not going on with the chemo.
Herry 25th January 2022
During the 1st Cycle:
1. General lassitude and feeling yuk - lying by the fire as much as possible. Going to bed at 8pm. Feeling a bit like having radiotherapy from the inside.
2. No appetite and incipient nausea - weight 75kg at the outset (stable for months before) down to 72kg by the end of the 1st cycle (and 68kg by the end of the 2nd).
3. Tingling sensations like strong pins and needles when you touch anything cold. Also makes cold food taste/ feel like straw in the mouth. Very odd sensation of cobwebs round the mouth.
4. Pain behind the eyes - for about 30 seconds. Usually after a cold drink.
During the 2nd cycle:
4. Strong pains in my stomach - this came on at the beginning of the 2nd cycle and by Friday 14th I had to be supported by a friend when walking a short distance. On Saturday 15th I walked to the chemist and back (200 yards each way) with a stick and had to stop frequently to lean against buildings. A 5 minute walk took 30 mins. I started taking 800mg ibuprofen on 16th which dealt with the pain quite well and so took this dose in the morning, afternoon and evening. It seemed to be less painful lying down, so I lay by the fire under a rug and went to bed at 8pm. The pains worried me as they weren’t listed as a side effects and I wondered if my cancer was developing. I tried to ring the oncologist on Friday afternoon but everyone had gone home. Consequently I rang the emergency number and was told to come into the Rainbow Unit on Monday. I attended Basingstoke Hospital on Monday 17th. It was most unsatisfactory as I never saw a consultant or anyone who seemed to know anything about the pains, but I was sent through A&E* (mixing with more people than I had seen in the previous two years) and had an x-ray which showed nothing nasty in my stomach, but the cause seemed to be unknown and was put down to the chemo. The doctor I saw when I signed my discharge waiver told me to continue to take ibuprofen to deal with it. The pains have lessened since stoping the last chemo pills (16th Jan) and are now almost gone.
5. Face - I had been aware of my face becoming red and raw for a few days but when I went to hospital (for the pain in my tummy) on Monday 17th, the nurses drew attention to it and said they would give me a cream for it. There was no one around when I left at 8pm, so I never got any. On Tuesday 18th my face was burning so much that I sent a photo to my doctor brother who advised me to get some hydrocortisone cream . This couldn’t be given over the counter so I was referred to the surgery who also said they couldn’t prescribe it. I then contacted the hospital who initially said the same thing until I sent them a photo of my face. They then rang the surgery and authorised the cream and an anti-histamine pill which I then picked up at the chemist. A three hour saga. My face burning still wakes me up and I apply Dermol cream to it several times a night but as I write on 25th January (ie at the end of the ‘off’ part of the 2nd cycle), it is getting better and burns less. The rash incidentally extends to my ears and the inside of my nose. It might also be related to the next item.
6. Unspecified sores (apart from my face, ears and inside my nose), I have some sores on the inside of one buttock, cracks on both feet and the end of my right index finger and the opposing thumb. The cracks on my feet were noticeable on 18th Jan but became much worse by Sunday 23rd (ie almost a week after the last chemo pills) and walking became painful, a version of the pins and needles that I felt in my hands, when I put my feet onto a cold floor. I also found that I was leaving blood on my bathroom mats in the morning but I couldn’t tell where exactly on my feet it was coming from. I have creamed my feet with Dermol as far as I can (I can’t reach my left foot as the result of the radiotherapy and operations I had in 2015). The pain wears off after walking some way, and it is not painful when I am at rest, but is still very painful when I get out of bed at night and I have to hold onto things to get to the bathroom. [This is still the case on 6th February, and I have to wash my bathroom mats daily, but I can walk better and have had a nurse come to apply a cream]
7. Nausea - this is a feeling stronger than ‘yuk’ and caused me to bring up my supper on 17th and 18th evenings (the latter included the last chemo pills). I know the nausea would have continued if I had gone on taking the chemo. It might have been related to the fact that I was given no dexamethadone with the second cycle. I felt better from about 20th Jan (ie several days after the last chemo pills) and my appetite is returning. My weight has also ticked up this morning from 68.5kg to 68.85kg - the first time it has risen since the start of chemo.
8. Diarrhoea - has been ongoing from my colon op in January 2020 but it has become stronger with the chemo. 5/6 trips a day and sometimes at night - but I don’t like the effects of Immodium, so put up with it.
9. Sleep-less nights - I sleep from 8.30pm and wake at 2.00 am. I don’t usually sleep again and often get up and then go back to bed for a hour at 6am. This doesn’t bother me particularly as I don’t have to perform.
10. One thing has improved with chemo. I have had polymyalgia for almost two years (and for the third time) and was refused predislone by my surgery for undisclosed reasons and put in the hands of a rheumatologist, Dr Buchanan. A nice chap but he just x-rayed my swollen right hand and left me to deal with the pain myself. I had been taking 800mg of ibuprofen each night and it was finally getting better in December when I had my first chemo, but as soon as I took it, the polymyalgia disappeared overnight. I guess that one of the related pills contained cortisone.
General comments:
I declined chemo in March 2020 after my operation for colon cancer, even though some cancer remained in a lymph node. This was based largely on the calculation that I would get an improvement in life expectancy of 15% and a reduction of 25% from the damage to my immune system (this was at the outset of the CV pandemic). I was also conscious of the fate of my sister-in-law who was on chemo for months and had a miserable time, dying anyway.
Having experienced its effects, I feel it likely that many people only continue with chemo because their families expect it and with men, as the consequence of misplaced machismo. Chemo should be given as a completely free choice of the individual concerned, having had the advice of experienced oncologists who spell out the the effects clearly. I was given 35 pages to read and all it was was a list of possible side effects. You don’t know the incidence of these effects or their degree of severity and worst of all, there is no follow up from nurses or doctors who just leave you to suffer until you are confident enough to ask to see someone, like me, or turn up for the next cycle. But even then there is no detailed debrief on how you’ve got on over the preceding weeks; you are just plugged into the drip again and left there. At the very least, there should be home visits from experienced nurses every week to discuss any side effects and to give guidance on the various pills that one is given.
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*Unfortunately they also found a single heart reading of 44 (my heart rate was actually 120/65 on all other tests) and so had me hooked up to heart monitors for hours despite the fact that that I was on absolutely no heart medication and had never had a problem. They then forgot about me, but wanted me to stay overnight. so I discharged myself. I think they lacked the seniority to stop the heart testing. I never saw a consultant.
NB: One thing I was shocked about was that one of the nurses who attended me in hospital in the afternoon came and sneezed in my ear. I asked her if she had a cold and she said ‘yes’. She was wearing an ordinary blue mask, not a medical grade mask, and I told her that she should not be attending me as I was a chemo patient and actually at my lowest level of immunity. She didn't seem to understand but nevertheless found another nurse to look after me. Clearly there is a deficiency in training there. It’s well known that there is a serious risk of sepsis when on chemo. The experience of Alex Lewis here in Stockbridge, who lost all four limbs to sepsis, and caught his sepsis from a cold, should be taught to everyone..
Herry Lawford
25th January 2022
I had a scan on 25th January, the results of which are detailed in the last note above, but on Wednesday 26th I had a call from Dr Rao, the oncologist who I had been dealing with, in great distress and apologising deeply for all I had gone through. He had thought that as I was fit and healthy I would tolerate the chemo much more easily and he was so sorry that that assessment had been so wrong. He also said that he would include my case in training.
On 28th January, I had a meeting with the consultant, Dr Nolan, whom I had not met before. He was a cool man lacking in empathy, unlike his South Indian No 2 . He made no reference to my detailed note to both of them, did not apologise or show any particular concern for my extreme reactions, and on the issue of lack of nursing support that I had detailed, just said that he couldn't get any more nurses and that many were still leaving the profession as were doctors and that the government was doing nothing to help, especially on nurses pay. The consultant agreed that more close nursing support was needed, but showed no inclination to join his fellow oncologists and insist on better support or at the very least have experienced nurses at local surgery level who would check on you. In fact my surgery didn't even know or acknowledge that I was having chemo, although of course they had had a letter from the hospital advising them, but without a request to follow it up. Anyway they have no one with any chemo nursing experience. All together most unsatisfactory, but it serves to reinforce my decision not to have anything more to do with oncology.
The consultant hadn't bothered to look at my scan taken three days before but called it up and we looked at it together. The two cancer spots had enlarged a little since the scan in November. Unfortunately the affected lymph can't be removed with surgery as that would involve cutting the blood supply to my colon etc. He thought that if the cancer continued to enlarge, that the first thing I would notice was loss of weight and then some obstruction in the stomach. He didn't recommend future scans as that would keep one focused on the cancer, when it would be better simply to try and ignore it. I completely agreed as that is what I intended to do. I hope to feel well for as long as possible and live as positively as I can, though it is perhaps relevant that my maternal grandfather died of colon cancer aged only 52.
Incidentally, the statistics on cancer survival rates are completely misleading as they ignore deaths from 'all causes' and try and show that chemo has improved one's cancer outcome, without putting it into the context of overall life expectancy, which is reduced due to the effects of the chemo on one's immune system and the increase in the incidence of strokes and vascular problems that arise from it. I had heard this years ago and is one reason that I have never given to the Cancer Charities (I support the nursing charities like the NGS instead) . This view is confirmed by Piers.
31st January 2022
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