A cancer diary: The side effects of chemotherapy

Maurice Gray

Maurice Gray, who has been sharing his cancer diary with us. - Credit: Maurice Gray

Back in 2019, north Norfolk photojournalist Maurice Gray shared his cancer diary 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 talks about the side effects of chemotherapy.

The experience of my first chemotherapy, however long it took, gave an all round picture of the forthcoming procedures, totally different to all the gossip and rumours that are often distributed. 

In fact, when consultants explain all the facts, to begin with and the opportunities for new patients to ask questions and be given the answers, good or bad, once given the facts give a positive horizon and a determination to see the light at the end of the tunnel. 

A machine for administering chemotherapy.

A machine for administering chemotherapy. - Credit: Maurice Gray

There were a couple of questions which I asked the consultants – more than once.

The first was: “If the chemotherapy penetrates through the veins and arteries, does it affect the brain, if so, does it damage the brain?”

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The answer was: “The chemo will circulate the body to destroy the ‘bad bits’, but we cannot stop it from other areas, including the brain. It should not do any damage, although some patients do say it does muddle them up a bit, but it settles down after treatment.” 

They often call this ‘chemo brain’ - and I will mention about my own brain experience later!

Secondly, I wanted to know whether my treatment would cause hair loss. I don’t have a head of hair, but I take pride in my eyebrows.

The answer was that some people do lose their hair, but rarely the eyebrows with the type of chemotherapy I was having, for Non-Hodgkin Follicular Lymphoma, Stage 3, Grade 2, and if they did disappear, they would grow back. 

I discovered my eyebrows stayed intact, but I got ‘brow dandruff’ – a dry skin problem.

Other side effects I experienced were tingling in my fingers and toes and itching, mainly on my legs and arms, which I had to have medication for.

One evening, because I was scratching the itch, I decided to have an early bath with salt water, thinking that it would stop the irritation.

But when I brought my knees up to the surface of the soapy water, I saw what appeared red from my knees, looking like a mini volcano!

However, it soon calmed down and the itching stopped.

A nurse doing a blood test

Maurice's blood is checked before every treatment. - Credit: Maurice Gray

After my seventh dose of chemotherapy (I was originally scheduled to have six, but a CT scan had showed a reduction in the tumours and it was decided I would have an extra two treatments), my consultant told me that after the eighth I would be put on a course of maintenance injections (I immediately thought I would be sent to a local garage) every eight weeks for two years.

The injection was Rituximab, used to treat Non-Hodgkin Lymphoma, which belongs to a group of cancer drugs known as monoclonal antibodies.

These drugs are sometimes called targeted (biological) therapies.

They work by targeting specific proteins (receptors) on the surface of cells.

Rituximab targets a protein called CD20.

This is found on the surface of white blood cells called B-lymphocytes (B-cells). CD20 is found on normal B-cells.

It is also found on most of the abnormal (malignant) B-cells that occur in many types of Non-Hodgkin’s Lymphoma cells. Rituximab locks on to CD20 and it then triggers the body’s immune system to attack the cells and destroy them.

It destroys both abnormal and normal B-cells.

Once treatment is over, the body can replace the normal B-cells.

Hope you got the gist of this!

Inside the Weybourne Day Unit.

Inside the Weybourne Day Unit. - Credit: Maurice Gray

My treatment was a six-minute injection and various after effects came with it.

A slight ‘heady’ feeling, tiredness, itching sore eyes occasionally, achy limbs, tingling fingers and toes, but not all at once.

The injections were uncomfortable and I began to feel these were not working, and after the fifth one I discovered a large lump under one arm and one in my groin.

The consultants decided to stop the injections and book a PET (Positron Emission Tomography) scan, an imaging test that uses radiotracers to assess organ and tissue functions. 

We were almost back to where we started and I felt yuck.

After a dishevelled and embarrassing scan, we awaited the results and got them by a phone call from my consultant.

My cancer had returned and worse than before, so the consultant immediately said he would book a biopsy of the groin lump.

This was going to be fun I thought, again!

At the appointment in November 2019, a very friendly doctor called us in and explained exactly what he was going to do with my groin (my thoughts rushed back to the bone biopsy I’d had)!

This was a difficult one - he definitely wanted trousers down and tried dealing with the briefs to cover my modesty! He did explain that he’d seen several in the past!

It was the nurse I felt sorry for standing alongside, twiddling her fingers!

However, after freezing the area, in went the instruments and the biopsy was taken – ouch!

Two weeks later we had a meeting at the Colney Centre with my consultant for the results of the biopsy. “It was worse than before,” he said and I was to have a new course of chemotherapy, initially, once a week for three consecutive weeks, then a two week break and then two days every 28 days for six doses.

Wow, that took some working out.

The treatment consisted of two drugs, specifically designed for the particular cancer I have, and where the patient had already been treated with a previous course of chemotherapy and had maintenance injections, which had failed to work.

This is exactly what had happened to me.

I thought, maybe, previous scar tissue from unrelated surgery may have been the problem.

So the new drugs were Obinutuzumab (a targeted therapy for the particular cancer I have) and Bendamustine (a chemotherapy drug) and these were due to start on 17th and 18th December 2019.

But, before that, I had to have four days of steroids and diuretic and stomach tablets for seven days.

Three  of the Clinical Haematology Specialist Nurses at Maurice's Christmas chemo sessions. 

Three of the Clinical Haematology Specialist Nurses at Maurice's Christmas chemo sessions. - Credit: NNUH

Christmas was creeping up and me and my wife, Margaret, both knew that this would not be a Christmas of normality for us.

But we were well organised and just planned to put Christmas on hold for 2019.

On December 17 off we went to the Weybourne Day Unit for my first treatment.

It was both of the drugs on the 17th and just one on 18th.

It took a long time and after two days I was exhausted, but still trying to remain upbeat, with the extremely kind and helpful staff.

On top of the chemotherapy treatment I had to take Aciclovir tablets (anti-viral) three times a day and Co-Trimoxazole (antibiotic) three times a week which were to continue for at least nine months. I rattled a bit!

Christmas Eve and New Year’s Eve 2019 were my next treatment days, which was surreal as it didn’t seem like Christmas.

But the staff on the unit were exemplary and did everything to keep the patients in good spirits.

Some of the staff said they loved working in the lead up to Christmas.

We regarded that as a compliment.

Laboratory equipment

Laboratory equipment. - Credit: NNUH

After the three consecutive weeks of treatment, I was very tired and had to rest quite a bit, ready for the next one in January 2020.

I felt drained, quite lethargic and very heady at times, but apart from that I was remaining upbeat as usual.

Poor Margaret insisted on doing all the organising and, as always, it was done without one complaint. Well, none that I heard!

In some cases patients lose friends and often, with some of their family, it can be difficult, but it’s usually because they do not know what to say to, or do for, the person who’s the patient.

Don’t be afraid to talk to people about your problems.

People who care will also give their time to support you, as my wife and I have found out, by talking to others.

I have some other helpful companions that I turn to, and they are apple cider vinegar and extra virgin olive oil!

Cider vinegar, extra virgin olive oil and fresh frui

Cider vinegar, extra virgin olive oil and fresh fruit is recommended - Credit: Maurice Gray

They are two brilliant products and if you take on honey, as well, you have a great contribution to your ‘health kit’.

Just one teaspoon of each per day is what we both have to help the body stay fit.

I also gargle with the diluted cider vinegar as one tumour is in my throat and, in my opinion that helps.

My favourite item in my health kit, at the risk of being repetitive, is ‘laughter is the best medicine’, in my opinion, and my so-called, singing and humming also helps me on my way.

Whatever you feel is good for you – just do it! 

We have spoken to many patients since I was diagnosed and I want to share with you what one cancer patient, Mandy, said to me: “In December 2019 I attended a routine mammogram, but had not had any symptoms. However, on New Year’s Eve I received a letter informing me that abnormalities had been found.

“I attended the James Paget Hospital on January 4 for another mammogram. On January 7 I had a biopsy and breast cancer was confirmed on the 8th. I was devastated as I had lost my sister to breast cancer eight years earlier.

“I had an operation to remove the lump and a lymph node biopsy on January 30. This was followed by 10 sessions of radiotherapy at the Norfolk and Norwich Hospital. In December 2020 I had a further mammogram which to my relief was all clear.

"Although I have had some side effects from the radiotherapy, tiredness, swelling and pain I have entered 2021 feeling well and positive and am on medication for five years and will continue to have yearly mammograms.”

We thank all the people who contacted us, with wonderful comments, after the last diary and will answer all your questions and concerns. My wife’s poetry book, Caring Thoughts, which she published to raise funds for equipment for the Weybourne Day Unit, is still available at £2 each (including postage), by contacting me on 07720 657918.

Next time, I’ll tell you about the rest of my new course of chemotherapy and side effects, the move to a posh hospital for treatment, more bad news, another biopsy and the proof that laughter helps healing.

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