Less than three weeks after my discharge from Queens Park Hospital I started chemotherapy at Christies; I had two different drugs, 5FU and Mitomycin on the first occasion and five more treatments at three-weekly intervals, 5FU every time and Mitomycin alternate times.
I had a light lunch of cauliflower cheese (anticipating nausea I thought the less I ate the fewer times I would be sick). My anaemia was then at an acceptable level and the treatment began, scheduled to last approximately 24 hours. Paul was with me when the sickness started, suddenly and violently; so violently that I wet myself every time I retched. (It was more than 20 years before I could face cauliflower cheese again!). Next day Paul returned to collect me and drove me back to his place with a sick-bowl on my lap and spares in the car!
The next treatment three weeks later was much worse. After the radiotherapy I went into instant menopause and I thought this might be a contributory factor as to why I was feeling so unwell mentally. I felt my flesh was sucking in and yet my body felt like it was exploding outwards. I felt like a hostage and wanted to tear the cannula from my arm and make a run for it.
At this point in my life as a patient I had started to notice the decline in the care I was getting at Christies. More and more pressure had been heaped on the nurses and they no longer had any time to sit and reassure me as they had done previously. Instead of all the familiar faces there seemed to be more and more bank or agency staff and as a result there was no continuity of care. (I truly hope this had improved over the years).
The toxic chemicals gave me a runny tummy, which really burned my stoma and caused me a lot of pain, so felt I needed to irrigate to try and empty myself as quickly as possible. Trying to irrigate in a hospital toilet whilst hooked up to a drip that was feeding chemicals into my hand or arm was a bit of a nightmare to say the least. Apart from vomiting my insides up during and immediately after the infusion, a few days later I would start with ulcers in my mouth and then through my entire digestive tract (mucositis). I could hardly eat anything as it hurt too much and I was in a mess. After that second infusion I told Paul I couldn’t go back for any more, I was finished. He would hear none of such nonsense and plied me with Build Up drinks and stuffed me with bean sprouts and brown rice (he had heard the latter had healing properties and I have no idea if that is true, but it didn’t exacerbate the soreness in my mouth and gut. Much later I was to discover that a hearty meal of brown rice before the chemo was better than eating very little. It seemed to line my tummy and lessen the effect of the toxins).
After my second brush with cancer my Australian cousins had given me an anti-cancer, anti-heart attack cookbook containing the Pritikin and Gerson diets, predominantly vegetarian or vegan and a bit too radical for me to follow. However, having read that book and many more, I concluded that red meat was more carcinogenic than white, so after my AP resection I had stopped eating red meat to try and aid my chances of survival.
Latterly I had been given a book written by Penny Brohn who had co-founded the Bristol Cancer Help Centre and she advocated the holistic approach. It all made sense to me and although I couldn’t manage a vegan diet, I did start a regression diet and loosely follow a maintenance diet to this day. I also take supplementary vitamins and minerals as advised by Penny Brohn and visualisation was something else she also recommended. That leads me to question whether writers/journalists should write about their cancer when they are currently trying to combat it. How can you visualise the tumours leaving your ravaged body when your daily life is focused on a book, an article, blog or radio programme? Think John Diamond, Helen Rollason, Nick Clarke to name but a few, (more recently Linda Bellingham and Kate Gross). Although I might have been tempted to document my experience at the time, I had my dissertation to concentrate on and that didn’t give me time to dwell on my cancer. (During my earlier encounter with cancer my time was spent concentration on my sons and working to pay off my debt).
Probably the most important part in trying complementary therapy was the belief I was actually doing something to help myself.
During the chemo I also had problems with my vision, memory and concentration – and mentioned these issues to the doctors who said they hadn’t heard of those side effects. As I usually arrived at the hospital very early and without exception only started my infusion very late, I decided to make use of the time (when I was still feeling human) by conducting my own unscientific survey with the women on the ward – and was interested to find that the majority said they experienced the same difficulties as me. I reported my findings to the doctors and thought no more about it, but now, some 25 years later, I find all three listed as possible side effects of chemo – and even given a title – ‘chemo-brain’!
The results of the blood tests prior to my 4th treatment showed my red blood count very low and so I needed to be transfused. With the last experience in the Blackburn hospital fresh in my mind I went into panic mode, even more so when the staff said they had no record of that in my notes, though the consultant had promised to notify Christies. Fortunately the staff trusted me and phoned Blackburn for the details. They assured me I would be fine, as they would give me an injection of steroids and also antibiotics in anticipation of any adverse reaction. The blood transfusion went according to plan, followed by the chemo and I was comparatively well throughout both.
Even though Dr James had initially been very reassuring about the possible hair loss, the inevitable started to happen. In retrospect I should have cut my hair short while it was still thick and silky, but I was clinging to the hope I might not lose it – or perhaps experience only slight hair loss. Gradually I noticed a change in the texture – it became dry and brittle and I had a terribly itchy scalp, but still I clung on, refusing to accept what the consequences might be, but then it happened. First whilst I was combing my hair and then great clumps would appear on my pillow each morning till eventually it all fell out. The loss of my eyebrows I could cope with as they could be penciled in, but the loss of eyelashes was quite a different matter. My lovely long thick black lashes – gone forever. Even though they grew again they have remained very sparse, perhaps also due to the aging process and not least that instant menopause. My nails suffered too. They have always been corrugated from root to tip, but during the chemo they grew corrugated from side to side – very weird!
One thing I hadn’t considered about being bald was how cold I would feel! Fortunately I love wearing hats and my mum made me a selection of knitted berets that were warm and snug. The wigs I was issued with were a real treat and my Art History tutor gave me a lovely large scarf to tie in a turban. The steroid injection caused me to plump up and with a nice head of hair, albeit artificial, I started to look remarkably well!
A beneficiary of my hair loss was Wilf, a porter who had regularly wheeled me to and from the radiotherapy department. He wore a rather thin bedraggled pigtail and one of his fellow porters, a young strapping lad, had a nice thick plait almost down to his waist. This dismayed Wilf, so when my hair finally fell out I plaited half of it, sealed it at the top and added tape so that he could attach it to his own, thus giving him a plait to be proud of!
Around this time I had to submit my dissertation to the college and hang my degree show.
A month after my chemo finished I had another CT scan and a check-up with Dr James, where he asked me to bring Paul into his office, which I knew to be the procedure when a doctor may think a patient might need some support when being given bad results. He looked me straight in the eye and said the scan results were good, but there were no guarantees; ‘however, I know you – and what you are capable of. We have done everything we can, so it’s up to you now!’ I knew what was implied, but he stopped short of telling me to go home and put my affairs in order, he was throwing down the gauntlet – and I accepted the challenge.