A cancer diary: The reality of chemotherapy
- Credit: Maurice Gray
Back in 2019 Norfolk photojournalist Maurice Gray shared his cancer journey with us.
Nearly three years on from his diagnosis of a type of lymphoma, he brings us up to date with a new series of features about his treatment for the ‘Big C’.
Here he gives us an insight into the realities of undergoing chemotherapy.
My first chemotherapy treatment finished at the end of a long day at the Weybourne Day Unit in the Colney Centre at the Norfolk and Norwich University Hospital.
I was given an appointment for the next session in three weeks, plus a bag of tablets to be taken regularly for the next few days.
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My wife, Margaret, was advised to check my temperature daily and if it was 37.5C or above we were told to phone the emergency number at the Colney Centre immediately – and then an assessment of my condition would be dealt with straightaway.
It is so reassuring knowing there is a 24-hour direct contact number.
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The hour-plus drive home was comfortable, because my wife was driving asking regularly if I was okay.
“A little heady and I just feel hungry,” was my reply.
Back home, I sat down on the sofa and had a cup of strong coffee with three sugars. “Yummy”, I thought, but where are my taste buds? They’ve disappeared!
It was the first noticeable after effect, apart from feeling slightly ‘yuck’ from the lethargy.
We looked through the guide book of do’s and don’ts.
For example, I had to keep clear of people with coughs/colds/infections and not to eat processed food such as soft cheeses, sausages, hams, previously cooked chicken, no undercooked food of any kind, plenty of water and so on.
There goes my traditional breakfast, and favourite, sausage rolls. Oh dear!
Chemotherapy lowers the immune system and therefore the body is less resilient to bugs.
The slightest thing can trigger off an infection, so you need to be cautious at all times. I’ll have to put my ‘bash hat’ on!
When it came to reactions, the loss of tastebuds was followed by a strong sensation of a rough coating in the mouth together with an odd white spot on the tip of my tongue.
The booklets reassured us that these after effects were normal and in time, fade away.
In my experience, none of them could be regarded as painful, just a little uncomfortable, and, in time, expected and acceptable as I got used to them.
Although it must be said, that all patients do not experience the same side effects, for different reasons and some have much worse effects than others.
The 24/7 direct phone number, which the patients have access to throughout the course, can be used for any questions or concerns they may have and we were given confidence and reassurance by the very helpful specialist staff nurses, who respond to calls and are always positive, whatever the query, and action straightaway.
Each chemo treatment has its own problems and procedures that we, the patients, must adhere to.
For example, whatever the distance we travel to the hospital, the prescribed tablets and medication, in some cases, have to be taken one hour before treatments, so if you’re travelling quite a distance you may have to stop to swallow the items, which is exactly what happened to me, as we live quite a drive from the hospital.
My wife and I had to select a particular lay-by, en route, in order to take the selection of nine tablets – four Prednisolone (steroids), two Chlorphenamine (antihistamine), one Ondansetron (anti- sickness) and two paracetamol, swallowed with bottled water!
We said this could be concerning because we imagined a scenario where, just as I would be ‘knocking back’ the pills, while parked in the layby, a police car cruises by, doing a U-turn and heads straight for us: “Ello Ello Ello!”
That did not happen, but the message is, be discreet.
After a few sessions of chemo, the staff at the hospital said I could take the pills before leaving home, but we decided to stick to our routine, which they found quite amusing, and on arrival, always said: “Have you been in the lay-by this morning?”
There is a follow-up course of medication which follows each chemo session and they are very important.
They consist of four Prednisolone (steroids). I called them ‘stair rods’, which I will tell you about later!
Four of these for four days, plus two Ondansetron for anti-sickness.
There were other after-effects.
Needing to have a pee very often and, like most after such procedures, constipation, which can be very uncomfortable but sorted.
Quite quickly, I found out the hard way!
This was one of the biggest hurdles and it was embarrassing, having to monopolise the loo, apart from thinking of Dyno Rod, pneumatic drills and dreams about the Dambusters, accompanied by anal tunes and melodies never heard of before – almost worthy of an audition on the X Factor!
This does not happen to everyone.
Using the 24-hour phone number will give a friendly voice who will advise and, if necessary, prescribe various items to cure the discomfort and constipation. “Can you send a plunger, please?”
Advice from one of the consultants suggested breakfast of tinned peaches and Bran Flakes.
It worked, along with some special orange-tasting powder sachets.
I must say that throughout my treatment I never experienced vomiting, nausea or diarrhoea.
And the after effects are certainly worth experiencing, stacked up against the opportunity to be able to have the availability of drugs to fight the cancer.
The atmosphere was always consistent at the Colney Centre, whatever the time of day.
The hustle and bustle somehow seemed so organised, caring and calm.
The reception staff welcoming appointees while checking in and a clear voice calling out a name and beckoning an individual patient, or couple, from the comfortable, bright and spacious waiting room.
Nurses always greeted us with a friendly smile and led me to be weighed and have a blood test (without any signs of ouches!)
Approximately 80 patients per weekday pass through Weybourne Unit plus many more for consultations and/or other treatment.
Just one section of the Norfolk and Norwich University Hospital and one
of the biggest and best in the UK.
We have to be aware that there are other cancers, such as breast, prostate, pancreas, lung, stomach, bone and many, many more which desperately needs a back-up.
The NHS is unique and should be supported.
The costs relating to cancer treatment alone is astronomical to which, us the population, do contribute to.
However, there are medical conditions which cannot be treated and funding has to be raised by the private sector.
This undoubtedly causes massive concerns for the patients and their families.
To imagine the unknown is enough to give anyone the jitters, certainly I got them when I was told the news that I had Non-Hodgkin’s Follicular Lymphoma, Stage 3, Grade 2, but, to consider the prospects should create a positive jolt of realisation that the future in safe hands, which will fight with you to recovery.
Yes, there are procedures that are uncomfortable, but all these ‘inconveniences’ have been researched over many years for our benefit.
A prick here and a biopsy there can bring a lot of worry, but it gives the specialists information from which they will track down the problems and hopefully to see us on the road to recovery.
The starting point at each chemotherapy treatment for me was getting used to the cannula (a thin tube inserted into a vein or body cavity to administer medication, drain off fluid, or insert a surgical instrument), which is inserted into the back of the hand normally.
The nurses are skilled, but I caused them problems because the veins were not offering them the entry they needed.
Sometimes they use a finer needle, but on most occasions it didn’t work. I said on one occasion: “If both my hands are showing good bloody veins, but no blood they would fall off!” This was, of course, not the case.
The problem solver, to encourage the veins, was simply putting my hands into a bowl of hot water, for 10 minutes, which helped them on their way.
At first, when I saw the bowl, I thought they were punishing me and I had to do the washing up! In fact, it worked and the cannula went in with no problem.
I then worked my way, at three weekly intervals, to the fourth session of chemotherapy.
I got used to experiencing the same side effects, the layby medication, cannula difficulties, and feelings after each session.
Then, it was time again for another CT scan.
A Computed Tomography scan, which is also called a CAT scan, it is an imaging test that lets doctors see inside the body.
The patient lies still on a table and special X-ray equipment takes pictures from different angles to create cross-sections of the body.
My scan results showed decreases in some lumps. One lump or two? It sounds like a cuppa! No, seriously, the team have me covered every step of the way, as they do with all their patients.
And the consultants decided to go for an extra two courses of chemotherapy as I had shown a slight decrease in my lumps.
At this point my wife decided we needed to do something, in return, to raise funds for equipment for the Weybourne Day Unit as a gesture of gratitude for my care and treatment.
Not being able to jump out of planes or run marathons, she decided to put some of the eclectic poetry she had written over the years and publish a pocket book, entitled Caring Thoughts.
Margaret has published several poetry books for lots of local charities.
Some of the poetry had been endorsed by the late comedian, Sir Ken Dodd, who she had the pleasure of meeting up with on one of his tours.
She started writing poetry whilst spending weeks in hospital, with many operations and procedures for an undiagnosed bone disease in her sacrum, complete with large tumour on the inside of her sacrum, which she christened Charlie.
To date, she is still undiagnosed and Charlie has to be scanned regularly to check on his condition.
However, she continues, in spite of the pain, to carry on as normal and certainly looks after me. What a wonderful woman.
Margaret and I spent a day at the Norfolk and Norwich Hospital launching the books, complete with a raffle. 500 books were printed and at £2 each will make a donation of £1,000 to the Weybourne Day Unit.
Copies of the book, for £2 each include postage, and are available by contacting me on 07720 657918.
In my next diary, I’ll be telling you about more side effects, my next course of treatment, laughter as medicine, plus two companions, cider vinegar and olive oil, and my PET scan.