Lumps and bumps - when the moment comes to fight for your life

Maurice Gray and his wife Margaret. Copyright Maurice Gray.

Maurice Gray and his wife Margaret at the poetry book launch stall at the Norfolk and Norwich University Hospital. Copyright Maurice Gray. - Credit: Maurice Gray

Back in 2019, Norfolk photo journalist, Maurice Gray, shared his cancer diary with us. Plus, during 2021 he brought us up to date with his continuing treatment. Now, he is about to share the last six months of his diary for his cancer - Non Hodgkin Follicular Lymphoma stage three grade two.

Hello – I am still on the planet writing my diary update since July 2021 amidst 6000 plus cancer patients now all being helped and treated at one of the best and biggest hospitals, the Norfolk and Norwich University Hospital NHS Trust, which is celebrating 250 years this year, with a lot of education, new equipment and procedures.

Maurice Gray. Copyright Maurice Gray

Maurice Gray. Copyright Maurice Gray - Credit: Maurice Gray

I was diagnosed with my cancer in May 2018 and have been receiving chemotherapy treatment ever since and am now in the second year of my "Maintenance programme", (Luckily not in a garage!) of treatment and receiving ‘Obhinutuzumab’ every eight weeks, which is a targeted cancer drug called a monoclonal antibody which works by recognising and finding specific proteins on cells.

To date I have had 40 various chemotherapy treatments. Since my last diary in July 2021 I have had four and just another two to go.

Tanya at Cromer Hospital getting ready for Maurice Gray's blood test, with receptionist Molly. Copyright Maurice Gray

Tanya at Cromer Hospital getting ready for Maurice Gray's blood test, with receptionist Molly. Copyright Maurice Gray - Credit: Maurice Gray

It’s been a long haul, but with a positive attitude and my dedicated wife, who always spurs me along I will get there.

I will never be cured, as I was told that in the beginning of the diagnosis, but at least I will be a bit better than I was nearly four years ago.

Never forgetting that I was told by my consultant it was serious and chemotherapy was urgent.

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The consultants, doctors, nurses and all the staff In the haematology department and the Weybourne Day Unit at the Colney Centre are absolutely first class, being so kind, helpful, comforting and reassuring, with their never ending smiles and patience.

Specialist nurses at the Weybourne Unit at Maurice Gray's December 22 treatment. Copyright Maurice Gray

Specialist nurses at the Weybourne Unit at Maurice Gray's December 22 treatment. Copyright Maurice Gray - Credit: Maurice Gray

Feeling as though I am part of "a big family", which always includes the volunteers, administrative staff and the communications team, who let me in, have been fantastic.

At the end of my previous diary I said I would give the results of my August 2021 scan.

Well, the consultant rang and said that some of the cancer areas were improved and some were the same, but none had increased, so I was in what they called "stable condition", and the last year of the treatment would go ahead as planned and I am now just over half way.

WOW - what with maintenance and now stable!

I have had so much support from my wife, Margaret and it is difficult with so much to consider, but, as mentioned before it is determination and keeping on the positive side and "going with the flow."

For example, the cocktail of drugs are specifically for the purpose and she said I have been a "patient patient", (I like that).

At the Weybourne Unit, receiving all my treatments I have been seated on comfortable chairs and surrounded by wonderful staff being always at hand but however long it takes you may be feeling a little poorly and tired but you have to make the most of it.

The volunteer "Redcoat Brigade" are wonderful always looking after refreshment needs and nothing is too much trouble.

Equipment infusing Maurice Gray's treatments. Copyright Maurice Gray

Equipment infusing Maurice Gray's treatments. Copyright Maurice Gray - Credit: Maurice Gray

The next chapter is explicit.

I would say there is no pain, but inconveniences.

There are various side effects, of course, and what goes in must come out and there is always a little help available with "orange sachets," and gases go through your digestive works on to the exit – anal tunes give way to almost musical renderings – I won’t push the point?!

It can be a bit awkward other times so with the gases in the stomach and gut I would probably take off!

Drinking lots of water at least two litres a day helps enormously after the treatments and just to justify science details that if a human "farts" (it’s in the dictionary), up to 25 times each day it is perfectly normal – so think about all that gas – perhaps it could be adapted for good use instead of paying out for high energy prices!!!!

The other benefit is you’ll always have seats available in theatres or on public transport!!

I felt other important thing to consider during treatment especially as receiving cannula through veins we have to accept that the infusions go through the body system, totally, which means into the brain (we are told is only temporary) but, it becomes a bit "brain scrambled" called "chemo brain" also called "Cognitive changes" which means changes in memory, concentration and the way a person is able to think.

It can affect activity as well as hearing and speech which can be embarrassing.

Sometimes I can’t remember names or words but it all returns after a time.

Days before writing this I said "Vaseline", instead of valentine’ in a conversation!

That was a slippery one!

These problems were first reported after chemotherapy treatments.

It has been reported, in the past that when some researchers first looked at this in women with breast cancer they found that chemotherapy might be the cause.

So these changes used to be called "chemo brain".

Another name people use is "chemo fog".

Cognition basically means thinking. In psychology, it means the way information is processed and recalled, plus the way you understand the world and how it works.

Most importantly is to try and not get depressed and anxious, although I understand that this is very difficult for many people.

Cancer is a trial and we have to fight it and do our utmost to overcome it, realising that all cancers, treatment, side effects and prognosis are so very different and affect so many people in so many different ways and approaches.

In my last diary I reported I had to have hearing aids fitted. Well, in October 2021 I had to return to the hospital to have them checked and adjusted as I could not get on with them.

Pet Scan showing Maurice Gray's tumours. Picture NNUH

Pet Scan showing Maurice Gray's tumours. Picture NNUH - Credit: NNUH

They were very difficult to deal with physically as with them, glasses, and face mask behind the ears. However, the nurse said I would have to manage the best I could.

My personal opinion is that we must always support the NHS, but they are getting a bad deal and surely the government can see that?

I have had all my Covid-19 vaccinations, including the fourth for the "clinically extremely vulnerable", as I apparently fall into that category due to my cancer.

At this point, in writing this episode, I am having my treatment at the Weybourne Day Unit and they have had a lot of trouble getting the cannula into my veins due to all the treatments I have had.

However, we are now up and running and the staff are fantastic. My wife is waiting for me in the carpark during which time she is always writing or reading to keep occupied and we keep in touch on the phone. When my treatment has finished I have to see my consultant.

The meeting with my consultant took place to discuss my remaining two treatments due in April and June 2022.

After discussion it was decided that due to all the side effects I am now experiencing, and believe me there are a lot, it would be best to defer the last two treatments for the time being. I will be able to contact my consultant if I have any problems and/or lumps reappearing, but I am well aware that my cancer has not been cured but is in a stable position.

So, I will continue fighting my cancer.

I was told right at the beginning of my diagnosis that this cancer would not go away and I would have to learn to live with it.

The consultant said I had done extremely well since my diagnosis in May 2018 – it seems a lifetime, but both my wife and I have managed to come through it so far, but, without her I would not be here today.

Another consultant I met, during my years of treatment said: “Cancer treatments have advanced greatly over the last few years and more and more people are living longer past their cancer diagnosis”.

He added: “Consultants try to keep steering the ship beyond the initial shock of grief, anger, sometimes awful despair, in a constructive dialogue to enable the patient to see what life could be beyond the initial shock."

Maurice Gray's blood being taken at Cromer Hospital before his treatment. Copyright Maurice Gray

Maurice Gray's blood being taken at Cromer Hospital before his treatment. Copyright Maurice Gray - Credit: Maurice Gray

We are publishing a book entitled, “Lumps and Bumps- My Cancer Diary” in autumn 2022.

It will express, in harsh words, my total experiences - sad and happy and to the point.

Keep up the "laughing" and "humming" tunes as it keeps the endorphins going and also helps and, it has been proven, it works.

Continue with the fresh fruit and veg plus cider vinegar works wonders, and beware of covid-19 and keep the masks on.

Stay safe and get checked out if you experience anything abnormal in your body.

The staff at the Norfolk and Norwich University Hospital are the best and I would never want anybody else to look after me.

My wife Margaret, wrote and published a poetry book entitled, "Caring Thoughts", to raise funds for patient equipment for the Weybourne Day Unit.

The book is normally on sale in the Colney Centre at the Norfolk and Norwich Hospital, but due to current Covid-19 regulations it cannot be sold there.

However, you can get a copy priced £2, including postage, by contacting Margaret on 07720 657918.