A cancer diary: 'What my journey has taught me'
- Credit: NNUH
Back in 2019, 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’.
Here he tells us about starting chemotherapy.
After going to the doctor with what I’d thought were just ‘lumps and bumps’ I’d undergone a number of tests at the Norfolk and Norwich University Hospital, resulting in my diagnosis of Non-Hodgkin’s Follicular Lymphoma, Stage 3, Grade 2.
But the test I was really concerned about was the bone marrow test, because of the experience my wife had when she went through a similar procedure a few years ago.
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I can only describe it as being like a corkscrew digging into a bone.
Now it was my turn.
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Waiting in a comfortable room, within minutes my name was called by a smiling nurse who led me into a crisp, white room, while double checking I was the right person.
I was greeted by another smiling lady doctor, who welcomed me and my wife, Margaret, saying: “Come on in, how lovely to see you”, which made us relaxed and calm.
The doctor got straight to the point: “We are going to do a bone marrow procedure, it won’t take long. We will take a snippet from the hip, best place where we can get a good result.”
She continued, saying: “Take your shoes off, lay on the bed on your left side and if you’re wearing a belt remove it so we can get to your hip, as I want you to get your leg over.”
We all laughed at that point.
“And put your right leg against the wall, and we’ll just pull your trousers and pants down sufficiently.”
I swallowed. I think that unlike women, generally men are reluctant to deal with any health problem - especially one below the belt, so to say, even if it has been removed.
“Good, that’s great, stay like that please”, said the doctor, pleasantly.
There was a little fumbling to find the right place, then: “Right we’ll take it from here – keep still while we give you a local anaesthetic in this spot, you’ll not feel it”.
Oops, that was me.
The doctor then said: “This should not hurt and if you can be still for a few moments we’ll be finished”.
At this point all I was thinking about was my ‘derriere’ being exposed.
“All done” came the gentle voice.
Well, that was certainly much better than the long drawn out bone marrow procedure my wife had.
I rolled off the couch and quickly adjusted my clothing.
“Leave the dressing on the hip and keep it dry for 24 hours,” were the doctor’s parting words.
There are more than 200 types of cancers, which are treated in different ways and these days more treatments are being researched and introduced successfully.
My next step was a very important meeting with The Professor and the team who were looking after me to find out the results of the bone marrow procedure and which chemotherapy treatment would be suitable for me.
It was time to find out what we were facing, and, of course, the biggest question was, can The Professor and the team keep me on this planet, and for how long?
A cancer journey is lengthy, with hiccups and hurdles to deal with.
But we the patients can plan our future as best we can, supported by an amazing team of professionals.
While we were discussing the bad and the best, we were shown, in detail, on the monitor every part of my scanned body and where the bits needed getting rid of.
It’s a strange experience having a look at your insides.
I saw some black smudges on the lower parts and asked what they were.
“Oh that’s gas all along there,” said a team nurse. “Gas in the bowel going through the system.”
Ah, that’ll explain all the ‘anal melodies’, then!
I hope you don’t mind if I take a little detour from the story at this point and share some of the things I’ve learned in the last few years.
Being able to see the funny side of situations has really helped me during my cancer journey, but I couldn’t be more serious when I say how important it is that if you notice any unusual symptoms, seek help from your GP.
Detecting cancer early is so important.
Doctors say: ‘catch it in time to consider your lifetime’.
When I developed a lump in my groin, I put it down as a strain.
And when I then developed lumps in my neck I dismissed it as the beginnings of a cold.
My wife made me an appointment to see my doctor and I am so glad that she did.
So if you have anything unusual - a little lump, bump, spot that doesn’t seem to heal or a mole that has changed appearance, get help.
We have met many people during our time at the hospital, including some who ignored their symptoms, not realising the seriousness.
Sadly, some left it too late and we lost them - wonderful people who did not look after themselves, but always others.
If you’ve been diagnosed with cancer and are going through treatment, looking after your mental and physical health is so important.
Facing cancer is traumatic, but try and have a positive mindset.
We hear and read horrendous and very sad accounts about those, of all ages, who have lost the fight or been beaten by this terrible disease, but as more and more research is done into treatments there is brightness on the horizon.
And the people who provide the treatment and care are just wonderful.
I recall my wife saying to The Professor: “Maurice and I are always a team and do everything together, we just need a leader for what is ahead”, to which he replied: “That’s me”.
Give up smoking, cut back on booze, exercise when you can in moderation and consider what goes in must come out and eat a good diet with plenty of fruit and vegetables.
And make sure that you drink lots of water to help prevent symptoms such as constipation.
At the beginning of my treatment I was told to drink more than two litres of water every day, and even though my wife kept on at me to do so, I didn’t drink enough.
But then a consultant recommended that I included fruit juice, squash and tinned peaches, which helped.
I also discovered that you need to keep a loo handy, so look out for the vacant signs!
Cherish the friends who are supporting you - and be prepared for the fact that some may walk away.
Some told me it was because they didn’t know what to say, and that was difficult.
Remind them that your cancer is not contagious - yes, some people think it is.
Go with the flow.
I’ve found that it’s true that having a laugh is good medicine.
Watching Del Boy and Bruv in Only Fools and Horses works for me.
Try and get your partner or family member laughing along with you - I think that it works better than pills in some cases.
It’s to do with the endorphins that get released into the body.
Don’t laugh (that’s a contradiction), but quite often I ‘hum’.
Hum songs, I mean.
It seems daft, but it works because my brain is trying to take in just what it is going around my body, even if I am regarded as a scatterbrain.
But taking on board some favourite music or songs, maybe film themes, anything to relax, as well as reminding myself about time past, keeps the brain active.
Also reading, crosswords or puzzles of any sort can all help towards avoiding dementia, I am sure, and helping to deal with the cancer, as I am doing now.
Of course everybody has their own way of dealing with their situation, but I wanted to share what I do, in the hope that someone may find it helpful.
Back to my story.
The Professor gave us the results of the bone marrow test, saying that the cancer had not spread to my bones.
That was a bonus. Get it? Bones!
So the time had come to decide on my treatment and The Professor offered me the choice of two types, or to go on to a clinical trial.
They explained that if I wanted to go on the trial, I would have to be assessed and if accepted, I would have to go through all the tests again, as the clinical trial section was completely separate from the department that was dealing with me.
Deciding which chemotherapy treatment was suitable for my Non-Hodgkin’s Follicular Lymphoma, Stage 3, Grade 2, we felt the clinical trial would not be a good choice, at the time.
However, we took lots of booklets home and at a very quick follow up appointment, with The Professor’s guidance, we had decided to go for the R-CVP chemotherapy treatment, which was a combination of four medications (Rituximab, Cyclophosphamide, Prednisolone and Vincristine).
This would be administered intravenously every three weeks for six sessions, we thought at the time.
My first treatment, which fell on my birthday, took a very long time as the medication has to be introduced very slowly, at the beginning of any chemotherapy treatment, to enable the monitoring of any reactions.
First of all a cannula was inserted into my hand and then several drugs passed through, including plenty of ‘flushing’ to ensure the pathway was clear for the chemotherapy.
Everything was monitored every 15 minutes and I spent most of the day at the Colney Centre, at the Norfolk and Norwich University Hospital, in the Weybourne Day Unit.
The staff are exemplary and so very kind and thoughtful.
And the fabulous volunteers pop in offering refreshments.
Throughout the procedure I felt very tired and ‘heady’ with an amazing feeling of the chemicals going round my body.
There was no pain and the treatment made me feel thirsty and I inevitably needed a pee.
So, I was escorted to the loo.
I locked the loo from the inside, and it was a little awkward, dealing with the cannula and the machine which was continually pumping the medication into my veins.
When I left the unit, I had been given a course of various medication to take for seven days and was told to ensure to avoid certain foods, like soft cheeses, pates and spicy foods, and to avoid going near anybody with a cold, cough, flu etc.
This, of course, was all before the Covid-19 pandemic.
In my next diary, I’ll share with you how my treatment progressed, about getting a CT scan and the results and my wife’s fundraising for the Weybourne Day Unit at the Norfolk and Norwich Hospital.