Post Radiotherapy

Hi to anyone reading this.

I joined the group back in August but haven't really been on since. I found it quite harrowing if I'm honest as there are a lot of people going thorugh the most terrible of times and I felt like if I got through this I needed to do it on my own and on my own terms and not think that what I read about somebody was necessarily going to happen to me and if it did, I would handle it as i happened, so I distanced myself from the community and ploughed on.  

I received an email from Macmillan on Friday saying that any individuals experience can help people and I remember a very positive messge I received that said something like like, 'my oncologist said it would take a year out of my life but I will cure you-it did and he did' and that positive message stayed with me. So I am just going to wite my journey so far and hope it helps somebody as fingers crossed it's positive.

After finding a lump in my neck, I was diagnosed with a cancer on 17th August 2022: this was a horrible time, I kept crying, I was terrified and I didn't know what was going to happen to me. Incidentally, I'm 6', was 15 stone, married, early fifties and a very fit active triathlete-non smoker, not too much alcohol. When I was told it was cancer, it was straight and to the point, it floored me but no point beating about the bush. 

After the ininital shock and upset, all the tests started: CT scan, MRI scan (horrible-but doable), Ultra sound, and biopsy under General Anaesthetic.

Still during this time, not knowing what was to become of me, I asked my consuatnt 'Am I going to die' she said this could have killed you but you have done something about it so let's get you sorted. I then had a meeting on 5th Spet with my consultant and a surgeon, they informed me I had SCC cancer at the base of my tongue and three lymph nodes that had cancer cells in and that it was HPV derived. They said the chances of survival were good and my choices were initailly chemo therapy or surgery. I opted for surgery and then Radiotherapy. I then had a panendocopy under GA to see if the area afected was operable. It was.

I had the surgery on the 29th Sept. It lasted 6-7 hours, I had transorial robotic surgery to remove the tumour at the base of my tongue and a neck dissection to remove two lymph nodes. I then had 25 staples in my neck to keep the wound intact. Waking up from the operation wasn't nice, I was delirious and sick when I was in the ward but next day I was home with a bag of drugs-mainly pain killers. That was Friday, Tuesday I was working again from home, sore but ok. The operation is tough on you for your swallowing but amazing considering that what you have had done that some of us are home vitually the next day. I have a scar on my neck which runs froom my ear to my Adams Apple but it's fine, it's very neat. The paiin you get from this op (or I have had) is the tendons and muscles underneath, oh and the numbness from losing some nerves in your cheek and your ear. As I write my neck is still sore, movement isn't restricted too much but it still a little bit painful and I hope this gets better over time. 

Six weeks after the op I started Raidotherapy (14th Nov) for six weeks. After initially having the mask fitted I attended hopsital, every week-day for six weeks for RT treatment, blood samples taken every Wednesday, meeting with Dieticiaan once a week and also a meeting with a Cancer nurse once a week. I drove myself to hopsital every day for the six weeks as this was something I needed and wanted to do. The RT was fine for the first two weeks-no problems. On the Monday of the thrid week my taste buds had gone, saliva was gone but that was basically it. The last two weeks of treatment were hard; tiredness, little bit of hair loss (just at the back of my head), difficuty swallowing, skin starting to feel hot. I'd kept wotking all the way through treatment but the last two weeks I actually took two weeks holiday-more so because I found it diffiult trying to balance all the appoinments and work. Had my last session 23rd Dec and rang the bell to signify the treatment was done. Last two weeks at home were the hardest part of the treatment-I was warned about this that after your last session the RT is still actively woking inside you. The side effects were; stopped eatiing (was just on shakes and fibre suplements), the skin on my neck started to crack and weap and scab and was very painful and angry. A consequence I hadn't expected was constipation. This was horrible, I'd not been the loo for over a week and New Years Eve I was in agony. Even thorugh I wasn't eating I was on protein shakes, I think the amount of milk I was consuming alongside the pain killers had the efect to bung me up. Lactilose cured this and in hindsight I wish I'd have taken it ealier-my fault for not speaking up when I asked how I was but I think if you are in this situation, factor a maintenance amount in your diet-not a mice subject but one I thin I could have avoided-the hospital offered to give me an Enema on NYE.

I'm now three weeks post RT and I have had pulpitis in my tooth, dentist thinks this could have been caused by the RT but one tooth needs root canal treatment now. 

So that's my journey, I have an appoointment in early February to see the Oncologist and then they set dates for scans etc to be then told in March if the treatments have worked. I'm positve they have but a little spectre of doubt is still there that until I'm told officially I'll keep the champagne on ice. Since my treatment started I've walked at least three miles every day, probably missed 5 walks in the last 5 months. I think this has helped me massively. The scabs on my neck healed in a week and my neck now looks fine but it is still sore and the skin is sensitive. I've also had a cancer exercise specialist and she's been amazing. I'm three weeks post RT and just come back from a run (only 5k but in 27 mins I am pleased with that) I've also been doing indoor bikes, now up to 50 minutes. I've not swam yet as my skin on my neck still feels sensitive but I don't think it will be too long beofre I'm back in the water.

It maybe ramblng above and if you think it is, I apologise but I think if I write down where I am it may halp someone see that all of our journeys are different: some poor people's are so hard and my heart goes out to them and I don't take anything that has happened to me for granted or indeed that the ordeal is over. Some people's experience however, still tough have a different path and I hope my update just balances out a bit the way things go. For me I cannot fault the NHS and all the staff that have looked after me and I thank them so much. Fingers crossed that mid-March I get a good outcome but we'll see.

Good luck everyone.