A cancer diary: Still fighting with my chemo mix
- Credit: Maurice Gray
Back in 2019, north Norfolk photojournalist Maurice Gray shared his cancer diary with us.
Nearly three years on from his original diagnosis, he brings us up to date with a new series of features about his treatment for the ‘Big C’.
In the latest part, he talks about undergoing chemotherapy during lockdown
My next update continues from Christmas 2019, when having chemotherapy took us into the new year, 2020.
That was followed by two days on January 14 and 15 with Obinutuzumab and Bendamustine treatment, followed by the same drugs on February 11 and 12.
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A week later, I had a big problem when my stomach (digestive system) and bowel seized up, which we had to report to the specialist nurses on the 24 hour phone line.
All the times the chemo mix was fine and the blood tests checked out good – I just needed a pneumatic drill – every time certainly went in the right direction.
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By March 10 and 11 I was back at the Weybourne Day Unit at the Norfolk and Norwich University Hospital for my treatment, for my Non Hodgkin Follicular Lymphoma Stage 3 Grade 2 cancer.
It’s a blood cancer which is called ‘follicular’ lymphoma because the abnormal B cells usually develop in clumps called ‘follicles’ inside lymph nodes.
Then on March 23 the government put the first lockdown upon us.
I was in the extremely clinically vulnerable bracket and was advised to shield immediately.
I certainly adhered to this for my own health and my wife, Margaret, decided to shield as well to protect me.
Ready for the next treatment at the Weybourne Day Unit I had to go on my own as my wife was not allowed to accompany me, due to the Covid 19 rules, so Margaret took me and collected me from the hospital after the treatment.
Everything seemed to be going ok, but after the next treatment on April 7 and 8 (I was getting used to the two drugs by now), I left the unit with a ‘takeaway’. Read on!
I was given five Zarzio injections, which is a solution in a pre-filled syringe containing the active substance Filgrastim, to stimulate the production of white blood cells.
With my particular cancer, the blood count on the Neutrophils are very often low and have to be checked before every treatment and at a certain level before I am able to take the treatment.
I couldn’t do them myself, but I told the consultant that without a doubt, I was sure my wife, Margaret would oblige! I would be lucky that she would volunteer to stab needles into my stomach. I hope.
Due to surgery I had received many years ago, the needles were going through scar tissue and it was bloomin’ uncomfortable and, we believed, caused further problems.
It seemed trial and error.
However, this had to be done and this is why I consistently mention hurdles!
Margaret was very gentle, and made sure she did a good job.
The opportunities to gain friends while having treatment is good.
Having a chat with the person in the armchair next to you is all reassuring stuff.
Even the nurses will join in, which gives us confidence and a positive attitude.
Nurses are on a tight schedule, but always find the time.
They are desperate to get back the volunteers.
During my first course of chemotherapy, a lady next to me gave a smile, during one of my treatments, and called over, “You okay? “Yes thank you” I replied and the conversation continued.
Nancy, who then was 81 years young, has a great sense of humour and is being treated for cancer.
She explained that the cancer spread to her pelvis and ribs and has been visiting the Weybourne Suite for 10 years and said: “The nurses, doctors, consultants and staff have been fantastic, they’ve been keeping me going for all these years”.
Her treatment is still continuing today, and she celebrates her 83rd birthday this year, and has injections at every hospital visit.
During my chemo treatments, Margaret and I noticed I was losing weight, quite a lot, although I am eating, but not as much that I had previously.
So I took to a ‘pint a day’
No not beer, I mean milk, full cream milk, and in time it helped.
It got to a stage where I had lost so much weight a belt would not hold my trousers up and shoes were in ‘flop’ mode although one of my feet (I have got two) swelled up after bashing it on the edge of the bath and so I had only one foot ‘flopping’.
It was an accident, I hasten to add.
The other matter I have to mention is exercise, which is very important - you shouldn’t do too much and certainly not too heavy. It is suggested by the consultants and nurses to do light exercises, so I use a couple of torches – get it?
No, seriously, keep as fit as you can without damaging yourself we were told.
Use your organisms – don’t get the wrong ideas, just in case you are thinking alternatives!
I mentioned recently about ‘humming’, even singing. I can’t sing, so I just ‘hum’, recalling the music and losing most of the lyrics.
As it happens, this has been reported to help avoid dementia problems.
We have done a lot of research and it has been proven that our bodies can produce endorphins (natural ‘peptide’ chemicals produced in your body interact with receptors in your brain to help you feel focused, less impacted by pain and put you in a better mood).
Laughter, singing and hopefully my ‘humming’ keeps the body producing these and have been labelled ‘a blessing to the body’ and help self-healing.
Check it out and put it to the test.
It’s all fact and helps positivity and determination and certainly keeps us going!
No comments, please!
So hum and laugh as much as you like, as it works by setting targets for the future.
Don’t worry about those who think you are mad. If you enjoy what you are doing or want to do, then do it.
Whilst writing this instalment, I had to pop out and get my second Covid-19 jab at Hoveton Village Hall, where a very well organised and very helpful team greeted everybody with a smile.
The hall was exceptionally well laid out and felt comfortable.
The nurse who gave me my jab, Nina, was brilliant and very helpful and a very professional site manager, Kirsty, was keeping the whole hall calm and efficient.
Margaret and I have now had both our jabs. Make sure you have got yours.
My next treatment was due on May 5 and 6, 2020.
The unit had now been moved to the Spire private hospital, due to the Covid-19 situation that the Norfolk and Norwich Hospital were dealing with.
I felt extremely privileged and lucky that I was still able to have my treatment.
But, it did not happen because my blood test was far too low for me to have treatment and it was cancelled and rebooked for a week later.
The bloods were still too low and it was cancelled again. But after another blood test (there was not much left at this point!), hurrah, on May 19 bloods were good and off I went to the Spire hospital for my treatment.
This was in individual rooms, unlike the Weybourne Unit and very ‘en suite’, but the nurses and specialist teams were the same and being as cheerful and kind as always.
The consultant decided that I had taken enough of the treatment and cancelled the drug for May 20 and said they were booking a CT scan.
A computerised tomography scan combines a series of X-ray images taken from different angles around your body and uses computer processing to create cross-sectional images (slices) of the bones, blood vessels and soft tissues inside your body.
CT scan images provide more-detailed information than plain X-rays do. It’s amazing!
The scan was at the beginning of July.
The good news was that some of the cancer had decreased, but it had shown up an area in my throat which was bigger than it was before my initial treatment.
So, I was referred urgently by my consultant haematologist, back to the ear nose and throat (ENT) consultant (a very nice man) where it had all started in May 2018.
It wasn’t a happy day for me and Margaret, as we thought we were doing so well after coming that far.
On the way home we both said “we have done this before, so, we can do it again”, and promised each other to remain very upbeat, and keep humming!
The appointment came through quickly and we went to the ENT consultant and he took one look at my throat and said: “I will do the biopsy now”.
Wow, I thought. So we went into another room, with two nurses and I sat on the bed and Margaret sat on a chair. The consultant said: “open your mouth” and he sprayed some liquid in and said: “that should take a few minutes to numb” and then picked up a large instrument which looked like a type of scissors and said: “open wide, don’t move and I will cut a bit from the area”.
Within minutes the specimen was in a jar and I was ready to go.
The consultant said: “The results would be back in approximately 10 days”. My mouth was totally numb and very ‘frothy’, for a short time.
In the meantime, keep humming and laughing and fight on.
We want to say a big thank you to all the people who have contacted us with such kind and reassuring comments and those who have purchased copies of Margaret’s poetry book raising funds for the Weybourne Day Unit.
Copies are still available by contacting us on 07720 657918
In my next diary, I’ll talk about the result of the biopsy, new medications, questions about radiotherapy, further chemotherapy and what the consultants have to say.