I suppose I better say a little bit about me. Back in 2020, I was 59, so I will keep it at that. My age increased to the tune of 1 in December, but, I'm not really keen on that number. I was also Male, and continue to be so..
I'm taking my Black Labrador for a run over the fields (he runs, I meander). The sun is out, it's cottage pie for tea and there are no dancing programs on TV tonight. Isn't life great. I'm just walking along and I feel this lump at the back.of my tongue. Before I go any further (Yeh, I know I've only just started), I had twice been referred to the hospital with suspicious lumps in my mouth. They both came back as non cancerous. This though, it felt different. I knew.....
It was Lockdown, So unless I'd got a tank, I was not going to get past the Doctors receptionist. I phoned up and as I thought, it would be a telephone appointment. Now, to be fair to the Doctor, I think I was a bit economical with the truth, as I ended up with antibiotics. I took these knowing I might as well be Smarties, but they did help clear up that nasty rash. Anyway, after a week, I bit the bullet and said I need to see a Doctor. They said there were only telephone appointments available. I thanked her very much and said, I will be there in 10 minutes.
Lockdown was then in its infancy, so barging into reception was actually a doddle. I politely said that I needed to see the Doctor. After a bit of negotiating with Michel Barnier, I was allowed to see him. He looked in.my mouth and with words I will never forget, he said "Oh". It's only two letters, but it's two letters that changed my life. I completed his sentence by saying "Oh bugger". After this bit of banter, I left and sat in my car. At this point, I must declare, I was a smoker. Yes, I know now. I don't know what's worse admitting to you all I smoked, or if my wife is reading this..... I smoked a cigarette in the car. I won't say my mind was racing, it had ground to a halt. What do I tell my wife?.... Nothing, yeh, that's a plan.
I got home. Tea was Steak Pie, Chips and peas, something I would kill for now, as 2Cal drip feed makes its way through my feeding tube. .." Fine, yeh. Just a standard referral at hospital". The minutes later, a phone call came through from the Doctor saying that I had an appointment was in two days at the Hospital. My wife just gave me the same look, as when I've left the fridge door open. The Rollercoaster was starting it's way to the top.......
I go alone to the consultation, due to Lockdown. I feel strangely confident as I go in. I've been here before and it's been ok.I explain that I think this swelling may be more serious, than the previous two, hoping for his confirmation of this. He looks in my mouth and my jaw hurts for the first time. He says "I m inclined to agree with your assessment" ....Oh Bugger
I have a camera down, or is it up, my nose, X-Rays and blood tests. To be honest, the rest of the consultation is a blur, as is the walk to the car and the drive home. I get back, it's Haddock, Chips and peas for tea. I'm really not hungry. Worst of all TV is full of singing and cooking. A week passes. I'm not sure what I did. I didn't want to walk the dog, or chat, or anything. A letter arrives for a biopsy appointment.
There is little to say about the biopsy, other than to say I had one. My memory around this time is terrible. I have to rely on letters to remind me.
It's results day. I might be ok because I haven't been asked if I want someone to accompany me. Yeh, I could be ok. I sit in the waiting area. My Consultant walks through and says "hi" to me. He was smiling, that's good. I get called in. The room is very busy. My consultant, three nurses and two other doctors. Uh oh. He looks at me and without much fanfare, but not harsh, he says " I'm sorry to say, it is Cancer". Oh Bugger
I put my head in my hands. The nurse offers me a tissue. I refuse and tell them I only ever cry when I watch the end of Educating Rita. I remain surprisingly calm. I ask if it's terminal (I often wonder why I asked if it was terminal, instead of is it curable). He says it is curable, but will mean a major operation and perhaps Chemo and Radiotherapy. I'm then looked at by a dentist who tells me he is taking out 3 teeth whilst I'm in theatre. He makes it sound as though he pops in whilst everyone else is having a coffee break. I'm told what the Cancers are and where they are. I just hear there are two or three, I can't remember.
As I write this next part, this is the first time since the operation that I have actually looked what the Cancers are. Up until today, I have just referred to them as lumps. I have never used the word Cancer. It's too defining for my liking. But in a world exclusive, I can announce (I'm going to be interested to find out what they were)....2 Cancers. One on the floor of my mouth and a Sqamous cell Carcinoma on the soft palate/retromolar.
After this meeting, I sit in the car and decide what to tell my wife. ... "Hi, it's me. Ok,, it's not great news, but it's not all bad. There found a lump, but it's totally curable" There, I told the truth. Ok, I reduced the numbers by one, made out, it was easily and totally curable and no mention of the word Cancer, besides that, it was spot on. I drive back home with Status Quo full blast. I'm just going to get Fish and Chips tonight and find a 're run of Midsomer Murders....
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Well, it's June 14 2020. The day of my operation. It's a Thursday, so I'm fairly confident my Consultant Surgeon, hadn't been on a 24 hour Stag Party. My wife drives me up the M6 to the hospital. Now, when they point out all the risks of surgery to you, at no point was I told of the risks of being driven by a very nervous, short sighted lady up the M6 with the sun low and no screen wash in the bottle. Anyway we get there, although I am suspicious of the grass in the radiator grill. I get out of the car and do what any person who is undergo mouth cancer surgery, probably caused by smoking does...I have two cigarettes. I then screw up the rest in the box and hand it to my wife. Now, in a film, they would make this a very symbolic moment, with tear inducing moment and a slow motion passing of the packet, indicating the start of a new passage in my life.....arh, I can see it now.....Nah. I just couldn't see a waste bin.
I get my 3 suitcases out of the boot, (it appears to have a dent I'd never seen before). We say our goodbyes...(a note for the filmakers...try and make this even more fear jerking than the cigarette scene). That's it. I'm on my own. I am in fact remarkably calm. Why am I not shaking? I go into the ward and shown to a bed. The dreaded gown is there. Have you noticed. You can have a chat with a nurse or doctor, whilst wearing you normal clothes and they will listen. Once you have that gown and green socks on, you could point out the ward was on fire and you would just get a knowing smile that you really just have a bodily fluid problem.
I write a glowing report of the delightful trainee nurse who has greeted me in that booklet about "How have we done". They give you this form before they divide your face into 3 pieces....Oh...There is even a question on there, would you recommend us ........ What? Yeh, Sure. When I get out, I'll put something on Facebook for people to get there name down for surgery as soon as possible. Who thought that was a good question? This cheers me up. I picture in my mind the meeting where this form was discussed. 10 people just back from the pub after lunch. You know that feeling. Your in a meeting and there is nothing you can do to keep your eyes open. You stretch your eyes, you move about, it s all no good. You will inevitably awake with a jolt when you hear that the tea and biscuits have come.... I come out of this daydreaming. My Consultant appears. He is not in the mood for small talk....Because I am now in my gown and green socks, he talks to my via the nurse. We are ready to go. Two minutes ago, I was in my comfort zone, a post pub meeting, now I am on a bed about to be wheeled to the Operating Theatre, by a Porter, who was not to be messed with. Off we go. I say hello to nurses and cleaners as I pass by, but I'd forgotten I'd got my gown and green socks on, So it was a waste of time.
I arrive at my destination. It looks like a storeroom. Loads of talking, but not me. I don't remember any of what I was told in there. I remember telling myself, I was going to stay awake enough to make sure I was properly out. .... That was is. I was out. It was to be a full 20 hours before they had finished. I think that was partly my own fault and vanity. They were originally going to take a graft from left arm. They explained it was the best place, although there may be nerve damage. I told my Consultant that I played guitar and I need by left hand to play up and down the fretboard. So he sighed and checked my legs. Ok, he said, we could try your leg. I was going to say that I played football, but I didn't really fancy the idea of where they would go for the next suitable area. So what happened was they took a chunk of flesh and blood vessels from my leg and put it somewhere in my mouth or tongue ( it's terrible I know. My tongue feels like a 10oz Gammon, but I have never asked where they put the graft). The graft didn't work. Apparrently, the blood vessels were working horizontally, but not vertically, So it had to be done all over again. Now, I know I have tried to add humour to this whole terrifying process, but you can't help but to be amazed at the skill of the Doctors. Transferring skin and blood vessels, then checking the horizontal and vertical flow of blood vessels. Amazing.
.....So they started again, but this time from my right arm. This was successful. They had now been operating on me for 20 hours. 20 hours? I've had jobs that haven't lasted that long. I will forever in the debt of those doctors and nurses. To do all that incredible surgery over 20 hours. I've worked on projects where there are deadlines, but working that long would be out of the question. Not having a long lunch was disappointing. There levels of concentration must have been amazing. I will forever be saying Thank You to them.
Coming round...tomorrow.
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Coming round. This is part reality, part hallucination. It's night time, I am surrounded by two individuals who want to inject me with some unknown drug, in order to steal my organs. I make sure they don't by flailing my arms and legs. I insult and swear at them, until I get too tired to put up any defence and let the girl inject me and I drift away. ....Now, I can remember that dream/halucination, but I am alarmed to find out later, that I was fighting off the nurses thinking they were going to hurt me. This is so embarrassing.
my first 2 days in Post Op care, I can't really recall. I am still halucinating, so even, now, I can't tell you what was real and what wasnt. It's quite frightening to think back. I thought the nurses were running a money laundering scheme and an unqualified doctor was on the ward. It all seemed so real. I had only started texting my wife after 3 days, but I was reporting back about this scary environment. She has kept these texts like a World War 1 wife would keep letters sent back from the Front Line. I've heard stories of hallucination, but I never knew how "real" they were. I'm scared to think what would have happened if I'd done something daft. You can't tell the doctor your are hallucinating, because you don't realise it.is going on.
I will describe from day 3, where I am more lucid. The hallucinations have stopped...... I wake up, surprised to see my blood pressure being taken by Elvis. Sorry, I just had to.... I am surrounded by wires and tubes. It is nothing like Casualty where after Open Heart Surgery, they are sitting up, chatting with one tube in their nose. I remember being told that I would have a Trachy Tube and I wouldn't be able to talk, eat or drink. I don't even try to talk. I don't want to see it either. The nurses are wonderful, especially after my swearing fit when I first "came around". I'm not sure what all the tubes do, it's clear I'm not going out jogging after lunch.
I then take stock of my situation, I have two large bandages on my right leg. One one my calf and the other On my inner thigh. I notice immediately that my green sock has gone missing. It's probably being washed. I look ridiculous wearing just one sock. I also have a bandage on my inner right arm. Considering I came in for the removal of two small lumps in my mouth, I certainly got my moneys worth. Now, I don't know how many Hundreds of Thousands of Pounds, this whole process will cost,, but I'm fairly certain ,it would not be covered by my lifetimes NI payments
I am visited by my Consultant and 6 other doctors. He examines my mouth and says encouraging words. It all looks good (The other doctors nod at their boss's assessment), but have I been to the toilet yet? he asks... Urm no. ..You must, he says. Ok, I reply, It seems another example of gown and green socks syndrome. He would never discuss my toilet needs if I had my suit on.
To be continued........
I'm now trying to get to grips with the bed settings. It will not be until my last day in hospital that I find out how to lower the bed without the bottom of the bed going upwards. Without going into too much detail, I manage to "go to the toilet". This seems to be greeted with much joy. I will not be returning to this subject again, although I am now asked every morning about how things are in that department.
I am approached by an athletic looking lady. Now, unless she has found my missing sock, I fear this may involve me moving off my bed before I can work out how high it can go. She is the physiotherapist. We are to do some neck exercises. I haven't yet seen my face or neck, so I have no idea what it looks like. We go through the routines and she tells me to practice these at least 3 times a day. I promise to do so, with the same conviction I had with doing my Geography homework at school, many years ago.
It's been 5 days since my operation.I have films and programs to watch on my Tablet, but I don't get have the levels of concentration to watch them. One of the nurses, who always looked very serious comes over to me. I bet she's spotted I've not been doing my neck excercises. She asks me if I would like a shave? I've never been asked this before. Is it a euphemism?.. I've not got a clue what I look like. I agree to having a shave and the nurse turns out to have a funny sense on humour. "Do you want to see yourself handsome"? I say ok. Well, one things for sure....I can't grow a beard. Tufts of ginger and grey. This is odd, regardless on what my grandson says, I have brown hair. Ok, I've been delaying looking at the damage. I have a scar from my lip to my chin. I have 3 big scars on my neck, which is swollen.....and there is my trachy tube. (The maintenance of this, I will get into in a while). I'm not that shocked at my appearance, as I didn't look that long. The nurse starts to shave. I can't talk, but I've no need. She doesn't stop talking for half an hour. She is so funny, but I can't reply. Who's have thought, after a major operation, tubes everywhere and losing a sock, I would be laughing....incredible
Oh yeh, the Trachy tube.. The nurses have been coming up to me and using suction on it. I don't understand the workings of it. I just know it's there for me to breathe, as my airways are blocked due to the operation. I've know idea what or where from this fluid is coming. I just go along with it. I m allowed my own suction tube, So I can do the easy bits myself. It's my new hobby. I say that, but I have been practising walking with the physio. I always thought I was quite good at walking, but doing 15 steps brings a round of applause from 2 others in the ward. It's starting to dawn on me, that I have been through a major operation. I was not going to make an incredibly fast recovery. I was human, I was not invincible. How could this be happening to me. But relief was on the way. I was about to make the first of my trips to the Max Fac department to have my dressings changed. They became my lifeline. I couldn't talk, but I was getting good at speed writing. I can't think of anything specific that was funny....You had to be there, as they say. It's amazing what a smile can do. Smiles were not as easy to come by when I was moved out of Special Care an onto the head and neck ward.
Moving day has arrived. I am accompanied through the hospital by a lovely nurse, who assures me that she will make sure my green sock will be forwarded into me when it is back from laundry. Things will be differrent for the next three weeks. No longer is there a nurse watching over me. You are at the mercy of the Alarm buzzer. I arrive. The porter is not impressed by all the luggage, but insists it is not a problem. No windows on the ward. Where's that booklet "How did we do" when you need it? The nurse says goodbye and leaves me to it. I feel like that 4 year old,whos mummy has left him on the first day of Primary School. I don't even know where my peg is. What will the other boys be like?
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Ok, I'm the new boy on the block. I lie on my bed. Blood pressure, temperature taken. The ward is off to the right of the corridor. I cannot see the nurses station. I feel a bit scared, I suppose you always do in a new environment. I can't talk and I don't really want to keep pressing my buzzer. I just of lie there.. You may notice, that the humour has gone. I want to go back to special care, where I had...urm..special care. In the end, I have to press the buzzer, it's way past my painkiller time. A Care Assistant came. I wrote down that I wanted my pain killers...please, of course..She said that she would have to get a nurse and dissapeared. Half an hour goes by, so I reluctantly press the buzzer again. The Care Assistant reappears. Oh yes, she says on her way in and swivels and goes back out. A nurse finished with a gentleman opposite me. I wave in a way that I think means can I speak to you. She says "in a moment". I'm feeling dreadful. I don't want to cause a fuss, but, I really am in pain. It looks like medicine time anyway. I'm last out of the 4 beds to be seen. I write down that I really need my painkillers. I try to write that I would like to split my tablets. I would like the strong ones now and then my paracetamol in two hours. I get no reply, but assume she has understood. She really looks miserable. My two stepdaughters are nurses and I'm sure they don't "do" miserable. It's 4pm. It's been a long day. It rolls around until 6pm.....I press my buzzer. This times, a nurse comes, I write down, could I have my Paracetamol? She says I'm not due any for another two hours. This was to be a running theme for the next 4 weeks.
Do you remember those nights in the hospital suite? What you could not fault was the room service. Every four hours a nurse would come round, do your blood pressure and take your temperature. I had heard about a tv show on Netflix, called Breaking Bad..I needed something to cheer me up, So I Googled it. It's about a Chemistry Teacher who finds out he has Cancer. To help pay for his treatments he decides to start making Crystal Meth...Well, that should do the trick. I won't give the plot away, but it was very helpful. More about my new venture later.
To be continued.........
Well, I'm not going to go on about the time on the ward. It's very boring. Just to say that all the doctors who were involved in my surgery were fantastic on their daily visits. I will never be able to thank them enough. Now that I have told how to write a blog properly ...(Thanks Dani), I'm going to sign this one off and start a new one called " Horty's coming home". After that it is the exciting world of Radiotherapy...Yeah....
