Maurice's cancer diary, part two: "What chemo is really like"
PUBLISHED: 13:14 13 February 2019 | UPDATED: 13:22 13 February 2019
Photo journalist Maurice shares the latest installment of his stpry since being diagnosed last year with non-Hodgkin's follicular lymphoma, grade three stage two.
I must admit that my blood pressure rockets when any sort of needle is being hovered, in search of a bold blood vessel, on any part of me, but, I quickly realise I have no choice and then the pressure comes down.
Being offered treatment to help extend lifetime has to be a priority and bearing in mind the amount of consultants, surgeons, doctors, nurses, the staff that work behind the scenes, family support, researchers and my anchor/minder wife, I have to consider just how many people are involved in keeping my welfare and life on track.
I remember a cancer patient who talked to me last year of the ‘horrors of chemotherapy’, saying, “It’s those drugs they pump into you, they’re poisons you know!” and I responded at the time by saying, “They’re all drugs designed to destroy tumours of all kinds of cancers and as long as we are not given arsenic or strychnine, we’ll be okay!”
The chemo journey begins
At the first chemotherapy, I was told by the attending nurse that I would probably experience headaches, particularly across my brow, as well as feeling lethargic and often nauseous. After various chemicals were pumped into me I felt reasonably OK, apart from being a little ‘heady’. During this session, the nurse made a point of checking me regularly and a doctor visited, as well as the ‘Red Waistcoat Brigade’, who volunteer their time to help in and around the hospital with some delegated to the Chemo Suite; actively helping patients, and running errands. They also do the rounds by visiting patients, offering refreshments, teas, coffees, biscuits, crisps fruit, sandwiches and more throughout the day, always with a smile. They are often seen popping back, offering ‘top-ups’!
The chemo finished, a note was given for the next session in three weeks, plus a bag of tablets to be taken regularly for the next five days. My wife was advised to check my temperature daily and if it reached 37.5C or above we were told to phone the emergency number at the Colney Centre immediately – it’s reassuring knowing there is a 24-hour direct contact number.
Back home an hour later, I sat down on the sofa and had a cup of strong tea with two sugars, ‘yummy’, I thought, but where were my taste buds? They’d disappeared. A first noticeable ‘after effect’, apart from the lethargy, was feeling ‘yuck’.
We looked through the guide book – of do’s and don’ts. For example, to keep clear of people with coughs/colds/infections and not to eat processed food, including soft cheeses, sausages, hams, previously cooked chicken, no undercooked food of any kind and so on.
“‘There goes my traditional English breakfast,” I said, thinking also of my favourite snack – sausage rolls.
The first reactions as I previously mentioned were being a ‘little heady’ and loss of functioning of the taste buds. This was followed by a strong sensation of a rough coating in the mouth, together with an odd white spot on the tip of my tongue. The booklets we were supplied, stated these after effects were normal and in time, fade away. None of those could be regarded as painful, just a little uncomfortable.
The 24/7 phone number, which patients have access to throughout the course, can be used for any questions or concerns they may have giving confidence and reassurance from the very helpful specialist staff nurses, who respond to calls and are always positive, whatever the query.
Juggling appointments and pill taking
Each chemo treatment has its own problems and procedures that we, the patient, must adhere to. For example - the distance to travel to the hospital for the set time prescribed for tablets and medication. In some cases they have to be taken one hour before treatments, so if you are travelling quite a distance you may have to stop to swallow the items!
My wife and I had to select a particular lay-by in order to take a selection of nine tablets (4 Prednisolone steroids, 2 Chlorphenamine antihistamines, 1 Ondansetron for anti-sickness, and 2 paracetamol).
After a few sessions of chemo, the staff at the hospital said I could take the pills before I left home, but we decided to stick to our routine of stopping in a lay-by on the hour or so drive.
There is a follow-up course of medication after each chemo session and they are very important. They consist of four Prednisolone steroids (I called them ‘Stair rods’, which I will tell you about another time). I had to take four of these for four days, plus two Ondansetron for anti-sickness.
<crosshead> The after effects
Now, is the start of some more after effects. For example, a need to have a pee very often and like most, after such procedures, constipation, which can be very uncomfortable but can be sorted quite quickly, I found out, the hard way. This was the biggest hurdle and it was embarrassing having to monopolise the loo!
Using the 24-hour phone number will give a friendly voice who will advise and, if necessary, prescribe various items to cure the pain and constipation. “Can you send a plunger, please?”
I was given advice, by one of the consultants, to have a breakfast of tinned peaches and Bran Flakes. It worked, along with some special ‘orange’ tasting powder sachets. Also, I must say that throughout my treatment I never experienced vomiting, nausea or diarrhoea.
To allay ‘awful fears’ that many people have heard, the reality about treatment must be clear and as blunt as possible. The unfounded rumours that chemo treatment means feeling bad/awful/terrible, in all cases, is absolute rubbish. Although it has to be said that various cancers, diagnosed at different stages, with some chemotherapy treatment can be much worse than others.
First of all, to imagine the unknown is enough to give anyone the ‘jitters’, but, to consider the prospects should allow a positive jolt into realising the future’s in safe hands which will fight with you to recovery.
Yes, there are procedures that are uncomfortable, but all these ‘inconveniences’ have been researched over many years for our benefit. A ‘prick’ here and a ‘biopsy’ there can bring a lot of worry but also a multitude of information from which specialists will track down the problems from there on, hopefully to see us on the rails to recovery.
Our wonderful NHS staff and volunteers
The atmosphere was always consistent at the Colney Centre whatever the time of day. The hustle and bustle somehow seemed so organised, caring and calm. Reception staff welcoming appointees while checking in, the nurse always greeting us with a friendly smile before leading me to be weighed and have a blood test (without any signs of ouches!).
Approximately 80 patients per weekday pass through Weybourne Unit, plus many more for consultations and/or other treatment. Just one section of the Norfolk and Norwich University Hospital – one of the biggest and best in the UK.
During the time I have been having the chemo treatment my wife and I have had lots of opportunities to talk to many of the staff, who always work long hours and, as they say, love their work helping those people with various stages of cancer who are afraid, even terrified, deal with the disease and above all, sometimes, the consequences.
The nurses are specially trained and will comfort and reassure their patients by talking, listening, and explaining what will happen while they are there but, above all, answering any questions the patient, or their family, may have which is really important.
Privately, the majority of staff (across the board) said, many times more space is desperately needed, which would allow for more patients to be treated. “We have a fantastic team working and the equipment but we do not have anywhere to use them”.
And if you mention car parking availability, well, that’s another story.
The Big ‘C’ Cancer Centre (adjacent to the Colney Centre) which is run by volunteers, can advise patients and families about any problems, either confidentially or in group meetings. Being a registered charity, established in 1980, the centre survives on donations and sponsorship and has other branches at Kings Lynn, Great Yarmouth and The Gorleston Hub at the James Paget Hospital.
Having a chat with the person in the armchair next to you is all reassuring stuff. Even the nurses will join in. They’re on a tight schedule but always find the time.
I remember once a lady next to me gave me a smile and called out “you okay?” I replied and the conversation continued.
Nancy, 81 years young, has a great sense of humour and is being treated for cancer. She explained that the cancer spread to her pelvis and ribs and that she’s been visiting the Weybourne Suite for six years. “The nurses, doctors, consultants and staff have been fantastic, they’ve been keeping me going for all these years,” she said.
Originally it was suggested that I have six chemo treatments, but later on, after having a check-up scan, the consultant added two extra sessions due to the scan results showing some reduction of the cancer. He suggested this was followed up by a two-year maintenance programme, giving me one of the four medications I had been having at each session as an injection every eight weeks.
We are very grateful for all the feedback and response we received through the EDP and to us directly. We hope our experiences and what we have researched has been of some benefit to others.
As we mentioned, and intimated, to get a positive diagnosis can indicate to many that rather than a feeling of failing and/or thoughts of the end, hopefully, with determination and back-up from amazing teams of staff and latest research, the prognosis will extend quality of life and a better future.
Next time, I will tell you about more after affects, some very weird ones too, that can be tolerated as ‘feeling better’ becomes the hope and encouragement. Also I’ll have exclusive statements from Mark Davies, chief executive at the NNUH a, Mr Ramez Nassif, ear nose and throat consultant surgeon, and Mr Vivekanandan Kumar, consultant urologist and NNUH cancer lead. We will also share the NHS costs relating to my treatment and details of various organisations who will offer help to patients and their families.
The bottom line has to be encouraging those who are concerned about a medical matter. If you are not sure about a lump/mole or something that is different about any part of your body – get help. Go and see your GP. We know it can be mind-blowing but it’s your life and don’t be shy, they’ve seen it all before.
And, don’t forget all the consultant referrals and treatments are free, paid for by the NHS in almost all cases.
We are very lucky to have, at the moment, such a facility in this country, especially at the Norfolk and Norwich University Hospital, which is one of the best in the country.