In November 2013 I went to my GP as I had been feeling a bit odd and had had colds on and off all year which I couldn’t seem to shake off. She prescribed me some anti-biotics and then said “What’s that on the side of your head?”
“A fungal infection” says I.
“How do you know that” says the GP
“Your colleague told me about 2 years ago, I’ve been putting various creams on it but it keeps coming back” says the patient.
“I don’t think it is a fungal infection, I’m going to refer you to a consultant” said the GP.
Thus began this saga.
In truth this mark on my right temple had been there for about 6 years but 2 doctors and a pharmacist had told me it was a fungal infection and I had no reason to disbelieve them. I used all manner of creams and unctions on it, I even rubbed raw garlic on it after reading something on the web (that stung!), sometimes it went away but it quickly came back.
In January 2013 I saw a head and neck consultant who became the first person to use the “C” word. He told me he was fairly sure it was squamous cell carcinoma (skin cancer) and he would need to surgically remove it and given the area it covered probably take a skin graft from my neck to cover the wound. This duly happened in February 2014 so at least I got my annual skiing holiday in before hand, it was a minor op so I was in and out in a day.
I wandered about with a pretty obvious wound on my temple and a less obvious one on my neck for about a month and then all the dressings, stitches etc. were removed. The wound had healed well and the consultant came to have a look. He was pretty pleased with his handiwork, he told me not to worry as he’d removed everything and that this type of cancer rarely spread, he booked me an appointment for the following week.
By this time I’d started to collect what eventually became a small library of leaflets and pamphlets that the NHS give out so that nobody can complain that they haven’t been informed. One of these was about checking lymph nodes and showed the locations; I never knew I had lymph nodes next to my ears! So I checked my lymph nodes and found a couple of tiny lumps next to my right ear.
At the next appointment I was seen by a young doctor (everyone looks young so yes I must be getting old) who didn’t seem particularly interested, he mumbled at my notes for a while and then tried to get rid of me, so I told him about the lymph node leaflet and the lumps I’d found. He left the room and came back with the consultant who said “Dr Whateverhisnamewas tells me he’s found some small lumps next to your ear so I’d like to look at them.” Well done Dr Whateverhisnamewas!
More surgery was booked and the lumps were removed in April 2014 and analysed with the result that despite the fact skin squamous cell carcinoma rarely spreads, mine had. The technical name for this spread is metastasis and if you want a scare Google “metastatic squamous cell carcinoma”, I did when I got home and realised that this was pretty serious.
In May 2014 I saw an oncologist who told me there wasn’t much known about metastatic skin squamous cell carcinoma as it rarely occurred in the UK, it was more prevalent in Australia. I was sent to Leeds to have a CT scan and a PET scan which showed up something below my right ear ( I can’t have an MRI scan as I have a pacemaker fitted, actually I’m on my second one now, other than that and the cancer I’m really healthy!). An ultrasound scan took place and a sample taken which was analysed and found to be more cancer cells. The recommended treatment was removal of all the lymph nodes from the neck on the side where the initial tumour had been and removal of the parotid gland (which produces saliva) on that side as well, this should be followed by a course of radio therapy to give a better chance of a cure.
It was June by now and I started to find that it is difficult to pin anyone in the NHS down about things like chances of cure, chances of survival etc. Over a few weeks I’d been given a number of impressions about the seriousness of my cancer ranging from thinking I had only a few months to live to thinking there was every chance of the treatment curing me. Neither my wife or myself was ever clear about how serious things were.
Looking back it sounds stupid but all I could think about at the time was that I wouldn’t be able to go sailing for ages. I sail small dinghies; I’m not good but I’m not crap either, I sail at open meetings and national championships and my sailing had improved quite a bit in the last season or so as my fitness improved. If I went for all this treatment I would miss the rest of the season including 2 national championships.
Also, I was in the army for around 16 years and illness is something I don’t have a lot of time for; its for other people. I hate hospitals too as they always seem to be full of incredibly unhealthy people (staff included). I know people are ill but some of them seem to just accept it, even enjoy it to a certain extent, visit any hospital and witness the people outside the main doors in pyjamas and dressing gowns, sometimes with a drip attached to them, smoking. My worst fear at this point was that I would go from a fit and active person to being a perpetual patient attending hospital half a dozen times a month.
So I asked my MacMillan nurse if she would find out what was likely to be the outcome of me doing nothing. She spoke to the consultants and then told me that if I did nothing I would be dead in 2 years. It was quite a mind concentrating moment so I opted for the treatment. Another motivating factor was that when I reach 60 I get my army pension, as a Yorkshireman this was pretty important.
In August I went in to hospital for surgery on my neck, I was in the operating theatre (under general anaesthetic) for 7 hours and woke up with drips attached to both arms, 3 drain tubes coming out of my head and a catheter fitted (how did that get there?). I was in hospital for a week where I slowly got rid of the various tubes and was eventually allowed to go home. I had so many stitches in my head and neck I now have scars overlapping scars from the previous operations. I had been warned that I may suffer some nerve damage; my lower lip was a bit floppy but it took a week before my shoulder stopped working. The staff in Ward 31 at York Hospital have my undying gratitude for looking after me so well, particularly given the grief they got from many of the other patients.
In early September I’d had the stitches removed and I went on my annual holiday to Cyprus and had probably the weirdest moment up to that time. I went down to the sea for a morning swim and found that I couldn’t swim, my shoulder didn’t work and it seemed that this affected one side of my body. The beach shelves quite quickly where we go and only a couple of yards into the sea you are out of your depth, I’d done my normal launch into the waves and then almost drowned. I managed to struggle back to the beach and stood up wondering what had gone on; I used to play water polo and now I couldn’t swim. Happily, after a couple more goes (no diving though!) I managed to do a sort of side ways shuffle using one arm and kicking my legs. I practised in the pool and by the end of our time there my shoulder was almost working again. It doesn’t sound like much but it took this to make me realise that it would be a long time before I got back to my old self, if ever.
My radiotherapy started in late September and started with a visit to have my mask made. In order to keep my head still during the treatment I needed to have a mask made that could then be attached to the treatment bed when I was lying down. My oncologist also told me that he’d decided to add chemotherapy to my treatment in order to kill off any cells that might have got further round my body than the area that would be treated by radiotherapy, this seemed like a good idea at the time.
My first chemotherapy coincided with my first radiotherapy session so that was an interesting day! Chemotherapy wards are the oddest of places where large old-person-like comfy chairs are provided for you to happily lounge in whilst an almost lethal poison is dripped into your body (along with other things). The whole process takes about four hours or so, during which you are offered a grim lunch and terrible coffee, then I was allowed down to the radiotherapy ward.
Being put in the mask and then fastened to the table was odd and apparently sometimes causes some distress to some people, but I pointed out that having spent 24 hours in a gas mask; 15 minutes would be a doddle. Seeing the look on the nurses faces I quickly pointed out that I’d been in the army and wasn’t a pervert and everyone relaxed. I’d taken a CD in and so at least I could listen to something I liked and the short time quickly passed.
At this point I thought things wouldn’t be as bad as I expected although I knew that as the daily radiotherapy went on I would be likely to suffer a number of problems. But it was the next day when the effects of the chemotherapy started; I was sick after eating anything and began to feel like I just wanted to curl up and die. The vomiting lasted about 3 days but I felt completely soulless and ill for about 2 weeks, I was told I had had a bad reaction. During this 2 weeks it was all I could do each day to get up, shower, dress myself and drag myself from York to Leeds for the radiotherapy.
The radiotherapy finally finished in early November, 35 sessions in total and towards the end I had another dose of chemotherapy for good luck; different drug same results. The staff in the various radiotherapy treatment rooms were brilliant through the whole thing, always asking how I was and helping where they could, the chemotherapy suite wasn’t quite the same unfortunately. My skin held out for about 5 of the 7 weeks but then needed daily dressings as it began to break down. After 4 weeks I was having trouble eating and nothing tasted like food anyway, my mouth filled with ulcers on the right side and I had to buy a childs’ toothbrush to clean the teeth on that side. The oddest thing was my hair starting to drop out but I didn’t realise it was at the time; I was on the bus back to Leeds station from the hospital in about week 5 when I noticed white hairs on the collar of my fleece, “who would bring a dog upstairs on the bus AND let them sit on the seat” I thought to myself brushing them off. When I noticed them again on the train back to York it dawned on me that it was my hair just dropping out as I sat there, I ended up as a man with one sideboard; an inch of baldness above my right ear and no hair on half the back of my head.
Once all the treatment had finished I did my best to get back on the path to normality wherever that was. My shoulder had got worse because as well as some nerve damage I had been hunching up a bit because my mouth, jaw and skin were in such a state, so I began physiotherapy to sort that out. The mess that was the inside of my mouth slowly began to heal and my taste began to return, by Christmas I sat down to a full traditional Christmas dinner and was able to taste it. I had no idea whether all the treatment had worked or not and wouldn’t find out until March when I was due for a scan, I assumed I was cured as I was improving all the time. The hair on the back of my head started to grow back and by February I wasn’t attracting as much attention in the pub, I still only have one sideboard though.
I had a CT scan in March (after having to cancel the MRI scan that had been requested) and awaited the results, the idea was that this would be used as a baseline to compare future scans with. By then I was fit enough to start sailing again although my shoulder was still restricting me and my fitness was non-existent, I managed OK but wasn’t as competitive as I was the previous year, at least I was sailing again. In April I received an appointment date to see my consultant but it was scheduled for a Monday rather than Thursday as usual, I queried it with the receptionist and she told me it was the consultant’s less important clinic on the Monday, “So you must be getting better” she said smiling, I strode out of the hospital a happy man.
On Monday 20th April I sat waiting to be seen, my consultant appeared but then headed back to his room with a set of notes, I was then called in by someone I had never seen before. This consultant was thumbing through my notes trying to engage me about my treatment which he obviously knew nothing about. I gave him a summary and he looked at my neck to see how it was healing and seemed pleased. I thought all this was a good thing, obviously nothing wrong and I’d be out of there in 5 minutes with the next scan booked, so I casually asked him about the scan I’d had in March; “Oh yes, it showed something near your lungs, just a minute” he said and then left the room. I sat there feeling a bit numb.
He came back about 5 minutes later and said that he’d been trying to get me onto the MDT meeting on Thursday so that my usual team could discuss my proposed treatment. I can’t remember exactly what else he said but I wandered out of there with an appointment for the Thursday feeling pretty dazed.
Thursday came and my wife went with me for my appointment, the CT scan had showed something in the glands near my lungs so I needed to have a PET scan to give them a clearer view and also and EBUS to take a sample so it could be analysed to determine what it was. I was told it could be anything at that stage including a chest infection, so I asked what the implications were for me if my cancer had spread, my oncologist shrugged and said “It’s incurable, you may have between 3 and 18 months to live, we can give you chemotherapy but only to control it”.
I can’t really remember what went on after that as I wasn’t really listening, we were taken round to a quiet room and a lung consultant came to see us and explained about the EBUS, and the we headed home to contemplate my limited future.
I duly had a PET scan and the EBUS and today (28th May 2015) I got the results; my cancer has spread to the glands near my lungs and it is incurable.
However, I have absolutely no intention of dying, certainly not before I get my army pension!
After the appointment in May I started to research alternatives to chemotherapy, it hadn’t done me any good in the past so I’m not particularly enthusiastic about having it again. I read a few books and gathered a lot of information and amongst all the quackery and charlatans found something which may help me. It too sounds like quackery but a Doctor in the U.S. apparently had considerable success with this method so I thought I’d give it a go.
Essentially, I have changed my diet; I am taking a number of natural supplements and I’m trying to sort my head out as well. So I’ve started this blog to document what I’m doing; if it works people should know, if it doesn’t then I’m no worse off as there is nothing else that can be done.