Tonsil cancer and recovery, my story so far.......
I discovered a small lump on the left hand side of my neck, just under my jaw, sort of gland area in May 2018. I assumed it was a swollen gland, but when it didn't go away after approx. 2 weeks, I went to my doctor. He wasn't overly concerned, but said it should be investigated if it was still there after 3 weeks, which it was. I went back to my doctor and he referred me to an ENT clinic. I underwent various tests, blood test, ultrasound, biopsy, CT scan and pet scan and all of the results were inconclusive, the doctors were adamant that the lump was harmless, however they would have to remove the lump. The operation was a success and a 4.5cm lump was removed, one week later I was told that it was cancer, a secondary cancer with an unknown origin. A second operation was required to find the origin, so my tonsils were removed, a small piece from the base of my tongue and all lymph nodes from the left hand side of my neck. This operation was much more complex, took around 4 hours and recovery was very difficult to say the least. Around a week later again I was told the cancer had originated in my left tonsil (HPV+) and found in a further 4 lymph nodes. No trace of cancer in my tongue thankfully and the lymph nodes with cancer were directly surrounding my tonsil and had not spread further down my neck. Around 40 lymph nodes were removed in total. I was told I would need 6 weeks of radiotherapy. Which, quite frankly was the worst news ever, based on the possible/likely side effects, and not forgetting that horrible mask. I was to have a high dose of radiation to the left hand side of my neck and a lower dose to the right. I postponed my treatment until after christmas and at this very moment I finished my treatment just over 6 weeks ago. The treatment was difficult and I felt side effects almost immediately, my saliva thickened up and my taste changed very quickly. I managed to eat the whole way through and even now without too much pain, obviously with a lot of medication. I am on a fairly strict, bland diet so not to aggravate my throat and ulcers. I started getting ulcers towards the end of my treatment which are only just clearing up now, but over the past few days managed to get oral thrush too. I get quite alot of pain in my jaw/gum that goes up to my ear, which is really painful at night, but have eventually found a pain killer to help that. The mucous towards the end of my treatment got pretty bad and is only just subsiding. My taste is quite good already and saliva slowly getting better. I am convinced that I have faired better than most throughout the treatment because of the lower dose of treatment to the right hand side of my neck. I had no internal side effects on that side whatsover, just slight burning on the exterior. The left hand side of my neck burned quite badly in the end, then scabbed, then peeled, over already fragile skin due to the previous operations, but it did heal quickly. I am of course still healing and still very much in recovery right now, but I'm hoping things will still get better. Looking forward to my first packet of crisps and sweeties and of course some alcohol........
I thought I would share my story in the hope that I can help someone else, or give other tonsil cancer patients hope and be able to give some friendly advice if needed. I am 38 years young, diagnosed at 37 if that is of any interest.
Best wishes to you all x
