Before this blog I had created a different blog with the intention of recording my journey through treatment. Sadly, things didn’t work out that way as I woefully under-estimated how sick I would get. So, as a prologue to my cycling adventure, and everything that’s happened since, here’s a “summary” of those awful few months. Be warned, it may not feel like a summary….
Don’t be a man! If you feel something, see a doctor!
In January 2016 I started getting a sore throat and, like most men, shrugged it off as one of those things. By the end of February it was still there and had developed in to occasional earache so now it was getting really serious – my upcoming vacation to Maui and my ability to scuba dive could be impacted! I took myself off to see the doctor and got prescribed some antibiotics, which did nothing, followed by a stronger dose, which also did nothing. Maui time came and I went diving without any issues.
The pain was still there when I got back so I went back to my doctor and let her know and got referred to an ear-nose-throat (ENT) specialist. Dr Loos turned out to be the spitting image of Wayne, my next door neighbor. Our first meeting was pretty intimate (Dr Loos, not Wayne) as he was gently caressing my tonsils with his fingers. Yes, you read that correctly. Having another human feel your tonsils with their fingers is not an experience I would not wish on many.
My tonsils seemed a little swollen (before the caressing) so Dr Loos decided to take them out. My surgery was scheduled for June 15th and I went about my business for a few weeks until it was time for the routine op and I could enjoy the recovery with lashings of rum and raisin ice cream.
The words you never want to hear
The op went well and I was chilaxing in the garden a week later when I got the call. “We did a biopsy on your tonsils and you have cancer”. I walked in to the house and told my wife and we were pretty stunned, as you might expect.
The next few weeks were a blur of scans and tests to better diagnose what was going on and the results came back as stage 4 oropharyngeal cancer that was in my tonsils, both lymph nodes and the back of my tongue. At the time I was assigned two oncologists, which I didn’t understand, but then it became clear that the treatment was a combined dose of chemotherapy and targeted radiation. They did not sugarcoat how dire the treatment was and the chemo drug, Cispaltin, came with a phone-book sized list of side effects.
I told my family in the UK and some close friends and prepared for the start of treatment on July 12th. On July 9th a good friend had a 50th birthday party and our 80s cover band got to play a great gig to take my mind off everything before treatment started.
Mentally, the night of Monday July 11th was pretty tough with the treatments starting the following day. I had no idea what to expect, except that chemo has an awful reputation.
The act of being poisoned seems so innocuous. They attach a drip of saline to begin with and then a few hours later they replace it with the same looking bag of clear liquid and you’re none the wiser.
I went straight from chemo to radiation and, aside from the claustrophobic mask you have to wear to stop your head from moving, it wasn’t that big of a deal, at least in the beginning.
“Can you still hear the lambs, Clarice?”
A couple of days later the chemo hits you as it’s destroying both your good and bad cells and comes with all kinds of side-effects.
Not to be outdone, the radiation treatment was also getting progressively more painful. It involved burning exactly the same spots in my throat for 35 consecutive days, leaving my throat raw and incredibly painful. The medication is upped from oxycontin and morphine to 100mcg fentanyl patches and it still hurt like buggery. Not only that but it also caused a weird shooting pain in my spine called L’hermitte’s sign. Also, either the radiation or chemo caused me to lose some hearing, but thankfully only the frequency that women seem to speak at!
Chemo sessions 2 and 3 came and went, along with radiation sessions 4 through 35, and by the end of August 2016 I was done with treatment, but not quite “done” with my ordeal. I was told that I should expect to start feeling more human within 2-3 weeks of my treatment finishing, but it was anything but that.
My blood pressure was tanking to 60/40 so there was definitely a fair amount of wooziness going on. With the low blood pressure I was getting 2 liters of fluids by IV at the oncology center every day and at the hospital on weekends. Due to the throat pain I was now unable to eat and had lost 60+lbs and while most of that I could afford to lose, the outlook was not good unless I started getting some calories in me. It was time for the feeding tube that I had declined when I was in a better condition to receive it.
Went to hospital and in to surgery under general anesthetic and came around to find no tube installed. The surgeon was unable to place the tube due to my rib cage so it would have to be done by a more specialized surgeon. Surgery rescheduled, general anaesthetic again and the tube was fitted this time. A couple of days later I was back in ER due to incessant vomiting and got admitted for an overnight stay. While I was there my tube was leaking stomach acid everywhere, which is not the greatest of feelings but many hours later they finally fixed that and sent me home.
I started getting calories literally poured in to me and being fed by my wife and parents was a pretty humbling experience.
After another lengthy vomiting episode I was rushed back in hospital again by ambulance and they really had no idea what was going on. The best they could do was calm the nausea, hydrate me and send me off again. The daily hydration went on for a few more weeks and with the nausea calmed down I could venture out for a few brief walks and eventually I returned to work for a few hours a day in mid-October.
The process of recovery started in late November and with an upcoming trip to the UK for Christmas I asked to have the feeding tube removed. I had dropped from 215lbs to 150lbs in 3 months and had to see a speech therapist to learn how to chew and swallow again. She was great at that but rubbish at teaching me an American accent. I’ll never forget driving straight to KFC after my first hour long session and practising with a family-sized serving of mashed potato and gravy. It was heavenly.
I was also able to cut back on a few of the medications I had been taking for months.
A fine selection, at an unbelievable cost. That bottle of MuGard worked wonders but $3,300 a bottle!! Ouch.
By the end of the year the most awful experiences were over and I was just dealing with a myriad of side-effects from the radiation and chemo, mostly related to low blood cell counts, dizziness and spasms – all much better than the other outcome!
After an inconclusive scan in December that still showed cell activity in the cancerous areas it was a nail biting Christmas. After another scan I finally got the all-clear in January 2017 and began the process of regaining some strength and enjoying my renewed lease on life.
I would not have been able to cope with this experience without the support of my unbelievable wife, my parents, my children, my friends and my work colleagues. The outpouring of support was truly phenomenal.