My warts and all cancer diary - part one, diagnosis
- Credit: Archant
Photo journalist Maurice Gray shares his personal journey with us, from diagnosis onwards.
Over the years my wife and I have been following the plight and concerns around the dreaded word 'cancer', a disease which can strike, at very short notice, on the innocent and vulnerable. Some try to fight it, but others unfortunately give in. There are victims of all ages, and research is showing frightening statistics that one in two people in this country alone have or will experience some type of cancer (and there are many), in their lifetime.
And then it happened to me. I was told I had cancer.
At first, I couldn't believe what I was hearing. This was frightening and I was having to 'go with the flow', and research everything I was about to experience.
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When I noticed something was wrong
Any unusual lumps, bumps, sores, moles and spots should be checked out by a GP, or even the local pharmacy in the first instance. I found out more than 8,000 people are diagnosed with various forms of cancer in the Norfolk and Waveney area every year!
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It is general knowledge that most women will take the initiative straightaway, whereas men have a reputation of avoiding medical matters, hoping the offending problem will go away, particularly if 'below the belt'.
Most partners, wives, husbands and parents will usually notice anything such as a mole or possibly a small lump that has 'popped up' suddenly and should be checked out. I am putting emphasis on this because it is very important
I came across a few lumps and bumps while doing normal morning ablutions last April using an electric razor for a quick shave, trying to avoid the mirror (I hate mirrors). Anyway, on this occasion, I did open both eyes while mowing my chin and neck instantly thinking I'm half asleep or the mirror was distorted.
Both sides of my neck were puffed out, like a hamster. From below my ears down to my collarbone. I prodded, thinking it can't be mumps having had that years ago. Other thoughts came to mind it could be an insect bite and then I remembered my wife had mentioned that my neck looked swollen for a few days. She began nagging me to go to the doctors and threatened to book an appointment for me if I did not do so.
At this point I must mention that we have been researching alternative medicines for two and a half years and found a great deal of healing interests in cider vinegar, a product that has been used for various purposes for hundreds of years.
I tried 'gargling' with a mix of cider vinegar, a little honey and a drop of warm water and within minutes it eased the soreness but didn't reduce the inflammation, on this occasion.
The first appointment with my GP
So, I made an appointment to see my GP and was soon sitting in the waiting room and called into the 'Doctor's Den'. Before he asked: 'How can I help you?' his eyes had seen my lumpy, swollen neck and he changed his friendly expression to a more serious one, even though I was still resigned to the idea my problem was just a silly infection. Now the vibes were telling me something else.
Tapping his keyboard, he asked abruptly: 'How long have you had these swellings?' and I said 'nearly a couple of weeks', glancing at my wife who nodded.
He started to check my neck and under my arms. I asked him if it could be serious and he replied: 'I think it could be'. He then asked to examine me and told me to lay on the couch, drop my trousers and lower my briefs. He was definitely on the ball, saying: 'This is probably the problem', as he found a small lump in my groin. At this point I was struggling with my pants, which were obstructing my trousers while balancing on one leg, almost dancing to get them on in a hurry, assured he would get to the bottom of it.
'I'm arranging a blood test and a chest X-Ray immediately,' he said as he returned to his desktop. He said it could be serious. I couldn't think of anything else to say.
The blood test was dealt with straightaway and the X-Ray booked for the following day at a local hospital.
And so to hospital
I checked in at Cromer Hospital the next day and was asked to wait in a room with other patients. My wife and I gripped hands and said 'We'll fight this' as we gazed around at the sad faces of surrounding patients.
As I was waiting I recalled the last time I had an X-Ray and the horrible thoughts of having to strip off and wear something resembling an odd piece of curtain material with ties, which were always worn back to front. That was years ago and I was pleasantly surprised to find out the 'bum flashing' robes are no longer used in most cases. Anyway, I was eventually called and told to remove all metal items and, apart from having to hold my trousers up, everything seemed straightforward. I was just asked to breathe in and hold. That was it. Modesty retained.
What did the doctor say?
The next day the GP phoned to say the blood test was normal and the chest X-Ray was clear, but he was referring me to an ear, nose and throat consultant at the Norfolk and Norwich University Hospital on 'FastTrack' (within two weeks I would have an appointment). This was when the minds churned even more as my wife and I both knew that this meant that the GP was checking for cancer. Some cancers do not show up in blood tests apparently.
I decided, with my wife's backing, that I would 'log' every step of the procedures to the very end.
Again questions started in my mind. What if? How long have I got? What will we do? Will I be in hospital? Will they operate? And has it gone too far? The not knowing is mind blowing. The thoughts hit the nerve ends.
We meet the ENT consultant
A few days later at the hospital we were led into the consultant's room. I sat directly opposite him and my wife nearby. He asked me how I was and I replied 'worried'. He asked lots of questions, and checked my inflated glands around my chin and neck although, ironically, the swelling had slowed down, but swallowing was still difficult. I noticed his assistant nurse was getting some equipment together and pushed it on a tray towards him - obviously a procedure that was regularly used and about to be used on me.
I was still waffling about my symptoms when he picked up a gadget from the tray, which, at a glance, looked like a thick necklace, but not quite as thick as those the Prime Minister wears!
Before I realised what was happening he had pushed the device up my nose and then I felt it 'gliding', for want of a better word, down the back of my throat whilst he twiddled it. He watched the screen that was directly behind my head. I felt slightly gagged, but as he continued I had the feeling of having my tonsils pulled out. Anyway he pulled his flexible friend out asking at the same time for a print out and there it was, a coloured picture of my throat. 'Is that it?' I asked trying to clear my throat. He explained that a growth was right at the back of my gullet behind my Adam's apple. Yes, he pointed out and said that they would have to do a biopsy and an ultrasound.
Off I went for the ultrasound and biopsy on my neck. The staff were fantastic and explained everything they were about to do. The ultrasound was quick and easy but the biopsy was a little more complicated. They gave me a local anaesthetic to numb my neck and before I knew it the needle was in and another tool to take out a piece of the lump in my neck/throat area. I just laid there like a knitted draught excluder – rigid!
Two weeks later we were back clutching hands and talked about whatever the results show we will fight it, which is easier said than done. My wife, Margaret, accompanied me throughout and became my nurse, mentor and minder and I am so grateful.
It was now time to face the facts. 'Well,' the consultant said, 'I've got some bad news and good news'. We both took deep breaths and deep swallows, fighting back the tears.
He added, 'The bad news is, it's cancer, and the good news is that you will not need an operation as you have non-Hodgkin's follicular lymphoma, grade three stage two – a cancer affecting the glands in your neck, under your arms, in your groin and behind the bellybutton.'
He went on to say he would have to hand me over to a haematology consultant at the Colney Centre which dealt with this particular cancer, in the hospital. We would get an appointment very quickly for the consultant and a PET (Positron Emission Tomogaphy) scan.
We left the department and walked back to the car – looked at each other and said nothing then, both together, we said, 'Well, there is only one way out of this and that is to take it and fight it all the way.' We both felt tears come to the eyes but were determined we would not let that happen and hoped the family would be with us all the way. Let's think positive. 'YES' we said positively and loud!
The date for the PET scan came through the next day, for May 25, 2018. I was contacted by one of the haematology specialist nurses, giving me a phone number which I could use 24/7 in case of any queries and the date for seeing the consultant, Professor Bowles, only five days later.
A PET scan
Now my confused brain rattled round my head about this. Was I having to go to a veterinary Service? But, no, this giant facility was based at the end of a long corridor at the NNUH where you turn left just after the mortuary on the right hand side. Whoops.
I was told in advance of the scan no food for six hours before but to consume 2.5 litres of water. On top of that I was to be injected with a substance called a tracer that produces radioactive positrons. I had to wait one hour after the injection before the scan could be taken. I asked the nurse, who was attaching the metal cylinder to the syringe, 'What does this radioactive stuff do? Do I glow green at night?'
She chuckled and explained it is to show up any abnormalities, including cancer, in the body. I sat there twiddling my thumbs, experiencing a weird sensation travelling around my body which wasn't painful but an interesting feeling that can't be explained unless you have it yourself. But, thinking I should have taken a book or paper to read.
I must have nodded off for a few moments. I could hear voices outside my 'porta loo' and when the door opened I was faced with a smile from the nurse. 'I'll take you to the toilet now,' she insisted: 'You have to be escorted and can only use a special loo away from all other patients and staff. There you go,' she said as she ushered me through a door. 'I'll wait for you outside. Have a pee to avoid wanting the loo during the scan.'
I had drunk 2½ litres of water!
I was escorted to the scanner - a massive long tube with a table type platform which I was asked to lay on, after removing my trouser buckled belt, but not anything else. Again, I was expecting to be given a robe type garment but I was allowed to keep my modesty and clothes on – what a relief and less embarrassing. You should see the scan pictures!
A pleasant nurse gently strapped me down and I was asked to lay still – breath in and hold for a few moments although I think they forgot to tell me to breathe out. It seemed ages before anything happened but it did eventually. Flicking orange lights and moving backwards and forwards I did as I was told and held my breath and then breathed again. Thirty minutes later I came out, unscathed.
We hurried back to the car park, I was so hungry I ate a banana and a packet crisps practically before my wife had got into the vehicle. Back home to await the next episode and ponder.
Meeting the professor
My appointment to see the haematology professor at the Colney Centre at the Norfolk and Norwich University Hospital came five days later. He's an amazing man who left no stone unturned in explaining everything to me about the cancer I had, and told me that the PET scan had shown there were no other problems within the rest of my body – just the Non-Hodgkin's, Follicular Lymphoma, Stage 3 Grade 2. However, he wanted to do a bone biopsy to check whether the cancer had entered my bones and he asked a nurse to organise it as soon as possible.
Six days later I was lying face down, bum up, while two reassuring ladies (a doctor and assistant) explained how they were going to burrow into my buttock to do a bone marrow test. I could not see what was going on, but felt a rustling, a slight pushing and pulling and a prick. Yes I felt the needle go in with the local anaesthetic followed by a screwing sensation (forgive the pun). Within a few minutes the doctor uprighted me, while removing a wad of tissue paper, adding, 'Try to keep the padding on for 24 hours and it should heal quickly.' I was shown the smears on the platelets of my bone marrow to be sent to laboratories at Addenbrookes in Cambridge. I must add there was very little pain – it just felt like a bit of bruising.
Almost a week later I was back at the Colney Centre for another appointment with the professor and hopefully for the bone marrow results. This welcoming gent, estimated at mid-thirties, (could be a compliment) was accompanied by his specialist lymphoma nurse, who was equally attentive and very helpful. There was no rush, it was time to discuss treatment with these true professionals who were allowing me and my wife as much time as we needed.
Prior to our meeting we had been handed a blue folder containing lots of information about lymphoma cancer treatments, and organisations, including hospital departments covering any possible concerns, including things that go right and possibilities that could go wrong, health and safety, hygiene, diet, attitude, personal issues and 'bottom line' answers where required. One of the most important things on this 'journey' was to ask questions and more questions, as this helps alleviate all the wonderings and apprehensions- Just find out. Just ask. You will get answers.
I asked the professor what would happen if I did not take the chemotherapy offered and he responded by saying, 'Three months at the most before serious problems set in, but if you have chemotherapy treatment I can offer you 30 years!' He added, however, that this type of cancer never goes away completely and can recur sometimes in five to six years, and then the treatment would start all over again.
I was offered three choices of chemotherapy treatment, by Professor Bowles which also included an experimental treatment, under trial. The choice was given, subject to the bone marrow test result, with literature, booklets and a great deal of detailed and positive information and another appointment, in eight days, when we had to make up our minds.
The chemo journey begins
I would have liked to take on the clinical trial but it was complicated, requiring me to have all the tests I had been through done again, and part of the trial was a 'lucky dip' to determine certain effectiveness, leading into a number of years, so I opted out. Having read all the other literature on the other two treatments on offer, I went for the R-CVP containing, Rituximab, Cyclophosphamide and Vincristine, made from the periwinkle plant (Catharanthus Rosea) and Prednisolone (A steroid). This cocktail of drugs would be administered, intravenously, every three weeks for six sessions, and the first was on my birthday, July 3, 2018. A lovely birthday present – as I was on the road to fighting on the journey and not considering a 'death day'.
Up, bright and early – stopping in a layby an hour before my arrival at the Colney Centre, in the Weybourne Day Unit, to take certain prescribed tablets at a set time (nine in total) was another experience. On arrival I was escorted to the chemo suite, pleasantly decorated with large wall paintings, a comfortable chair, one for my wife, and surrounded by music and smiling staff.
After a blood test, to determine whether I was suitable to have the treatment, the cannula was in and we were dripping into the first session of six. An excellent supply of coffees, teas, biscuits, crisps and fresh fruit were available throughout my session and also sandwich lunches for those who had a longer stay coupled with a selection of daily newspapers which were offered by volunteers. There are more than 700 volunteers, 'The Red Waistcoat Brigade', helping throughout the hospital. The doctors and nursing staff were one-to-one and very attentive and would answer any questions, however endless.
The first session lasted nearly a day due to the strength of the cocktail being infused and the reaction. The staff were brilliant checking everything with a watchful eye, overseen by specialist nurses with long experience who gave their time monitoring every drip. This gave us the reassurance and positive treatment. All the time during the treatment, it was monitored and relayed to the consultants and doctors.
We're in it together
The true fact to absorb is how each patient with any kind of many types deals with the word 'cancer'. Each and every one of us must adopt a positive attitude and face the future, explaining to family and friends that we need their support and not to step back not knowing what to do or say. Being a cancer patient can be very lonely. Don't let this happen.
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, '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.'
The chemo treatment, side effects and how to deal with the aftermath