Hello

Hi everyone, I was diagnosed with HPV16+ cancer in my tonsils back in July and life has been a bit of a blur since then. 

*my two best friends have had exactly the same cancer and treatment and their journeys are totally different to mine. So this is my story if you read this and think this could happen to me, I would say everyone reacts differently. You journey will be yours….

It all started with a small lump on the side of my neck which normally I would have ignored, but the pain just wouldn’t go away after 4 or 5 days. Went to my GP who said they didn’t know what it was and referred me to my local head & neck clinic, looking back I think they had an idea but wanted it confirmed before they said anything. H&N stuck a camera up my nose (turns out I’ve got a very sensitive gag reflex) and found no signs of anything and so booked me in for a biopsy. 10 days later I was back in and being told I had cancer but they are unsure of where about’s it was so they booked me in for a MRI & CT scan, these didn’t show any cancer activity and so I had a PET scan a week later. 

The PET scan showed the cancer was in my left tonsil and nowhere else, after a chat with my consultant a date of September 20th was set for my operation to have my tonsils removed (more about this below). I was then sent to Mount Vernon to talk to an oncologist about what further treatment was needed, after another scan it was decided that both sides of my neck needed radiotherapy treatment and two courses of chemotherapy. I was then admitted back in to hospital to have my peg fitted. 

My radiotherapy started on the 24/10 and finished on the 2/12, my two courses of chemotherapy were on the 25/10 and 22/11. The first chemo left me tired but I was still able to work and do things and I was coping with the radiotherapy, I hadn’t fully regained my taste from my tonsil op so I lost that fully quite quickly but could still eat things like weetabix, okay wasn’t great but it was food. By week four eating was hard so was on the ensure drinks, which I didn’t find too bad.

My difficult time came after the second course of chemotherapy, I did not react well to that (Cisplatin), I was sleeping for around twenty hours a day after that it just left me empty, by the Sunday I was severely dehydrated and being constantly sick, on the Monday I was taken in to Mount Vernon for a few days to get rest and be drip fed fluids to help me recover. 

So I had my last radiotherapy last Friday and I’m home starting the recovery process, my throat feels like it has glass in it and my tongue is still sore which I find is making me gag and feel nauseous (back to my sensitive gag reflex issue). If it wasn’t for this issue I would be okay, but every time I speak my mouth fills with thick saliva and I start reaching and gagging which is embarrassing and uncomfortable. Hopefully this will stop soon once the effects of the radiotherapy ware off. 

Tonsil op & RIG fitting - again I will say this is my journey and my two mates did not have these issues. 

After my tonsil op, I was sent home the next evening, one night in hospital for what I see as a major op is a joke, I was sent home on the Wednesday evening and because of a back log at the pharmacy I had no medication to go home with, my son had to drive back to the hospital on Thursday morning to pick it all up. There was no schedule with the medication so we had to sit there and work out when to take the 25+ tablets and liquids, tablets I might add that were so painful to take. Thursday evening around 5pm my throat started bleeding, by midnight it was so bad I went to A&E, sat there for 5hrs before being seen and told I would have to spend the night on the ward. I finally got a bed at 4pm on the Friday, by this time the bleeding had stopped on its own and I was sent home on Saturday morning. 

The Thursday after I was back in hospital seeing my consultant to check on how the op had gone, on the way I started bleeding again from the operation site, only a little bit enough for us to pull over a couple of times. My consultant looked inside my mouth and said that due to the bleeding he wanted me to stay in the night but wasn’t concerned, I sat back in the waiting room for them to find me a bed for the night, then all hell broke loose, my bleed got worse, I was filling a sick bowl up with blood and half and hour later I was rushed in to surgery, it was something out of a tv show, there were doctors and nurses running everywhere. I woke a few hours later on the ward with a very sore and numb throat but at least the bleed had been stopped, but yet again the sent me home the very next day but at least I had more medication this time. The issue all this caused was my tongue/tonsil area hadn’t fully recovered by the time my radiotherapy started so now I have an extremely sore and sensitive area at the back left of my throat/mouth which is making me gag when I talk.

A few weeks later I was back in hospital for a two night stay to have my RIG fitted (2 nights for a rig 1 for a major operation, doesn’t make sense to me but there you go). Anyway to have the RIG fitted as you probably know they place a tube up your nose and down your throat in to your stomach, which my friends had and all said it was slightly uncomfortable but okay. So along came the nurse to fit the tube and, well, to say it was uncomfortable was an understatement, the poor man in the bed opposite me had to walk out of the ward as he said it sounded like I was being tortured. As I’ve mentioned my gag reflexes are sensitive but they couldn’t even get the tube in to my throat with out me reaching and gagging. After three attempts the nurse gave up and said the surgeons will try when I go down for my op in a couple of hours, I was traumatised by it all by now and just the thought of them trying gave me panic attacks. Two hours passed and I was wheeled down for my RIG fitting op, laid there getting more stressed about the tube being fitted when the nurse came over and told me that the hospital had lost my bloods and the op was cancelled until the next day. So another night was spent in hospital, just what you need when you are self employed. 

The next morning the consultant came to fit the tube as I had turned the nurses away, he turned up with some numbing spray which numbed my nose and the back of my throat and the tube went in okay, I asked why this wasn’t given in the first place and he said it’s because patients don’t like the numb feeling. Honestly I was lost for words, there was me having panic attacks about this and they could have just of given me the spray after the first attempt and all would have been fine. The RIG was fitted and I have to say it’s been great (once Abbott nurses gave me a working pump). 

Christmas is just around the corner and hopefully I will be able to eat something small by then and I’ve a holiday that was booked before my diagnosis to Jordan with my dad at the beginning of March to aim for. As I’ve said this is my journey and I know from my friends journeys that everyone is different in how you react to the treatments. Oh and my friends are both fully recovered on had it in 2018 and the other in 2019 both now on yearly follow up visits and both back to their annoying selves ;-)