A cancer diary: A back to front battle against lymph nodes
- Credit: Maurice Gray
Back in 2019, north Norfolk photojournalist Maurice Gray shared his cancer diary with us.
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’.
There are more lumps and bumps and this time it’s in the mouth.
But all has been sorted very quickly.
The consultant is on the lump for a biopsy by taking a couple of snippets while I stand with my mouth open – a couple of snips and a lot of froth.
Mr Ramez Nassif is a very experienced ear nose and throat consultant surgeon, so there are no worries in his hands.
He kindly allowed us to interview him during my cancer journey. He has to deal with all sorts of patients and cancers.
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During the conversation he said: “Cancer treatments have advanced greatly over last few years and fortunately more and more people are living longer past their cancer diagnosis.
“However, what could be more challenging and emotionally draining trying to deal with news of unexpected terminal cancer and end of life?
“Dealing with patient’s expectations and their loved ones at this stage would surely depend on extensive training, professionalism and most importantly well supportive team of nurses and allied health professionals.”
The results of my biopsy came back and I was referred directly to the doctor dealing with me who organised an appointment to decide what to do with the lump, which was in the right tonsil area…even though I had my tonsils removed when I was a youngster!
At this stage, a suggestion was made for me to have radiotherapy for that area, as the scan showed that 80 percent of the cancer had gone.
Therefore, it was decided that I should have an appointment with a consultant oncologist.
But I was a little worried about having my throat lump being ‘zapped’, because of what I’d read in the booklet issued to me at the beginning of my treatments, when I was diagnosed with Non Hodgkin Follicular Lymphoma Stage 3 Grade 2 cancer, back in summer 2018 when chemotherapy was my best option.
I am not saying radiotherapy is no good.
The booklet we were given explained the good and the bad of any treatment and problems that can occur.
So, I agreed to the appointment with the consultant oncologist, on the phone due to the Covid-19 situation, and an extremely kind consultant made the call and we chatted about what would be done over a short period, but he said he did not think there was any rush, thus allowing me plenty of time to consider the options, and he said he would advise my consultant accordingly.
Finally, my wife Margaret and I went to an appointment at the Colney Centre at the Norfolk and Norwich Hospital with my consultant haematologist and discussed the whole situation regarding my cancer.
And after some discussion and lots of questions, which were always readily answered by the consultant, it was finally agreed that I would start a course of Obinutuzumab infusions every eight weeks for two years.
“Wow” I thought, “that’s a long time”.
But my wife and I were up for anything at this stage.
Obinutuzumab was one of the drugs I had been having over the previous months and belongs to a group of targeted therapy drugs known as monoclonal antibodies.
These drugs work by targeting specific proteins (receptors).
Obinutuzumab targets a protein called CD20 on the surface of white blood cells called B-lymphocytes (B-cells).
It then triggers the body’s immune system to attack the cells and destroy them.
I was then told to stop the antibiotics I had been taking for nine months, but to continue with the anti-viral (Aciclovir) tablets, three per day, until further notice - and I am still indeed taking them every day!
Also, during one of my chemotherapy courses, when our little toy poodle was due for her annual vaccinations at the same time, she was not allowed to have the kennel cough vaccine, as it was a ‘live’ vaccine and my consultant said that could cause a problem for me.
I have to avoid live vaccinations like the shingles one, for example, although the flu and Covid-19 vaccinations were ok as they were not live vaccines.
Earlier during my cancer treatment I received a statement from Mr Vivekananda Kumar, consultant urologist and NNUH cancer lead, who said: “We are proud of the service we deliver for patients. We work as part of a multi-disciplinary team, made up of different specialists, to design a personal treatment plan for each patient depending on their condition. Our specialist nurses also provide an additional source of support for patients as they progress through treatment.”
And towards the end of my first year of treatment I had the pleasure of interviewing Peter Andre at Potters Holiday Resort at Hopton, who allowed us some private time before his evening show.
Somebody had told Peter before the interview that I had been diagnosed with cancer and during the interview he told us he had lost his brother to cancer.
He did not want to elaborate, but was very keen to know about the cancer unit at the Norfolk and Norwich University Hospital, where I was having treatment, and said he would keep up with mine and the hospital news.
We have emailed him on a number of occasions, but to date had no replies.
If you see him about, tell him to give me a call!
We have to be aware that there are other cancers, such as breast, prostrate, pancreas, lungs, stomach, bowel, kidney, bladder, bone and many, many more which desperately need a back-up.
The facilities the NHS offers to millions in the UK is unique and should be supported.
The costs relating to cancer treatment alone are astronomical to which, us the population, do contribute.
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.
The day arrived for my first dose of the new treatment, the Obinutuzumab infusion, and I duly arrived at 8.30am for the morning session.
As always, the staff were so kind, caring and welcoming and no question was too much for them to answer.
Never feel afraid to ask any questions in the Colney Centre.
Everybody who works there is amazing and you will always be told detailed answers to all your questions or problems, however elementary some of them may seem to you.
After the session I felt heady, had sore eyes and eyebrows, and was very tired, but these were all normal reactions, and after a few days I was back to the writing.
At my second session of Obinutuzumab infusion, I showed the consultant a strange bump that had grown, over a short period, at the base of my thumb, like a mini volcano.
He told me to make an appointment with my GP as soon as possible.
I thought I was growing another thumb!
I managed to book an appointment within a few days and as soon as my GP saw the bump, he said it could be cancerous and referred me immediately to dermatology at Cromer Hospital.
My consultant dermatologist appointment came through very quickly and when he looked at the bump, he said it could be skin cancer and it would have to be removed surgically.
So on December 29, 2020 I went to Cromer Hospital and had the bump removed from my hand and came home with six stitches and another course of antibiotics.
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 there is an encouraging horizon and with determination and professional guidance the future may offer a longer life.
I recall my wife saying to The Professor during my first year of cancer: “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”.
She also said to one of the consultants who asked, on leaving the room after one of the consultations: “Have you any more questions?” My wife said yes she had and explained that she felt guilty because we were taking this journey, being positive and upbeat to tackle it, as lots of cancer patients were struggling and in some cases not surviving.
The consultant replied that having a positive attitude, like ours, could benefit patients in lots of ways during their cancer journeys.
That statement was mindblowing, but gave us more courage to do it our way and be positive, but always follow the rules.
The volunteers at the Norfolk and Norwich University hospital, who we christened the Red Waistcoat Brigade, have not been able to attend during the Covid crisis, but prior to that were in full swing.
A lovely group of people, led by Sally Dyson, and I had the pleasure of meeting a group of them before the pandemic.
They are always looking for volunteers in all departments and if anyone is interested please contact them on 01603 286060 or email: firstname.lastname@example.org
Margaret’s poetry books are still available raising funds for the Weybourne Day Unit priced at £2 including postage. Contact us on 07720 657918.
Next time: The results from my hand surgery, how treatment progresses and referral to another consultant.