My cancer diary, part three: "The maintenance begins"
PUBLISHED: 10:41 14 March 2019 | UPDATED: 10:50 14 March 2019
Photo journalist Maurice Gray continues his personal cancer diary.
Since my diagnosis the ‘memory kick’ often comes to mind from the beginning of my journey, when I asked the professor what would happen if I didn’t have the chemotherapy offered. His instant response was: “Three months at the most before serious problems set in, but, if you have chemo treatment, I can offer you 30 years.” He added: “However, this type of cancer never goes away completely and can recur sometimes, in five to six years’ time, and then the treatment may start all over again.” It was a positive statement to which I did not need to give any consideration, there were no options.
There was an element of decisiveness throughout my treatment, and my wife and I both felt comfortable during our meetings with the consultants, that they could deal with any situation, whether good or bad.
I said from the outset that descriptions of the side effects of chemotherapy must be stark and precise, otherwise it is pointless trying to give an understanding to those who are unaware of the situation.
The side-effects I’ve experienced so far may not be those of others, but are generally similar. Having chemotherapy in itself may be uncomfortable but not painful. The discomforts, when the chemicals start working on the disease, make their presence known, or felt, in various ways.
Last time I explained about the body (well, the bowel) seizing up, and how I dealt with it, ‘the hard way’. I’ve also had continuous rumbling tummy, accompanied by ‘anal tones and tunes’! Not funny when on a bus, or at a supermarket checkout, but true. However, these events ease off when the stomach adjusts to the diet change and intrusion of chemical invasion. When the body’s system recovers it’s a treat you will never forget-wow! Light exercise certainly helps, and especially drinking lots of water.
Then again, chemotherapy affects the bladder and certainly encourages us patients to keep an eye on any ‘vacant’ loo signs.
I must tell you why I call the steroids ‘Stair rods’. Well, I found the steroids to be an ‘accelerator’. They left me needing a wee very often and I would rather sit on top of the stairs in readiness (there was no downstairs loo). I would get up the stairs and count the stair rods as fast as I could!
The next phase of treatment
Having completed eight sessions of chemotherapy I am now ‘looking forward’ to the two-year maintenance programme, which hopefully will decrease, even further, the cancer left in me and this treatment is an injection in the tummy - a new procedure for faster effect- with Rituximab.
Rituximab is used to treat Non-Hodgkin’s Lymphoma (NHL) and 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 called CD20 on the surface of cells.
CD20 is found on most of the abnormal (malignant) B-cells that occur in many types of Non-Hodgkin’s Lymphoma (NHL) 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.
My treatment was a five minute injection and various aftereffects came with it. A slight ‘heady’ feeling, tiredness, itching sore eyes occasionally, achy limbs, tingling fingers and toes, but not all at once.
Oh I must tell you this one. I was having a bath, on this particular day when my knees started itching strongly. I brought my legs up above the frothy water like two volcanoes (my knees I mean) and blood was running down my legs. It must have been because I had scratched them so much.
Another weird effect was when both feet shed loads of skin. In fact, my socks had to be emptied before washing them each day. It continued for a couple of weeks and after using moisturising creams, it went away.
Everyone is affected differently but if you’re at all worried, there are qualified specialist nurses on the end of a direct phone line 24 hours a day, which is so comforting, reassuring and always very helpful, kind and caring.
I will be having Rituximab injections every eight weeks for the rest of this year and then a CT Scan in January 2020, after which I hope to keep you up to date, before the second year of my ‘maintenance programme’ begins.
Many thanks for all your supportive comments, messages and emails. And my wife Margaret and I would like to thank all the staff and patients for their help, cooperation and understanding. Plus thanks to Janice Bradfield, senior communications and membership manager and her super team at the hospital, who put up with my persistent requests for information, plus the PACS Team and behind the scenes organisers and wonderful volunteers.
How much did my cancer care cost?
During my treatment we researched the costs of the procedures, and so far, including the diagnosis, tests, scans, chemotherapy and follow-up prescriptions, it is averaging at £15,000 and running. This is not including disposable equipment, gloves and the like. So, adding to the two years’ maintenance, the total will probably be over £20,000, supplied by our wonderful NHS. Imagine how much it would cost under private medicine and even more in other countries?
We have to be so grateful, bearing in mind research is in full pace and coming up with different treatments, more effective treatments, and even robots to help cure our ailments. One of the amazing robots used in the hospital has four arms and a console, providing a magnified 3D view. It’s mainly used to carry out assisted prostatectomies, but also in bladder removal, kidney removal and colorectal surgery.
Comment from Maurice’s doctors
Mr Ramez Nassif, ear, nose and throat consultant, said: “You would never have thought that delivering bad news could be an art or even a skill that a person would have to acquire. Positive attitude and energy would not be synonyms with the word of cancer. Every day, doctors and surgeons in our hospital, NNUH, have this onerous task on their hands of how to deliver the ill-fated news of cancer.
They try to adhere to their professionalism and expertise in moulding the medical facts into layman’s words, and make some sense during these difficult times for their patients. Empathy, is the key word in their training but sympathy to the bearer of bad news, they do admirably day in and day out.
They do admit that it’s a team work and surely it is, but can’t take away the emotional burden on them and their teams in sharing life changing news with their patients and their families.
They keep steering the ship beyond the initial shock of grief, anger and sometime awful despair, into constructive dialogue to enable the patient to see what life could be beyond this initial shock.
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 a patient’s expectations and their loved ones at this stage surely depends on extensive training, professionalism and most importantly well supportive team of nurses and allied health professionals.”
Mark Davies, chief executive at the NNUH, said: “We have one of the largest cancer centres in the UK, offering world class treatments to 6,000 patients each year. We offer diagnosis, treatment and research of cancer and our teams work closely together to offer patients state of the art treatments. Our aim is to offer the very best care for patients in Norfolk and we are pleased that Maurice Gray was able to benefit from our services.”
Mr Vivekanandan Kumar, consultant urologist and NNUH cancer lead, 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.”