This probably all started about two years ago, around August 2017. I noticed a tickle at the back of my throat. It really just felt like I had a piece of lettuce stuck in the back of my throat, but I couldn’t get rid of it. It didn’t hurt or annoy me – it was just there.

I finally went (on September 17, 2019) to my GP looking for advice. He couldn’t see anything, but, if I remember correctly, he didn’t actually bring out a mirror or
laryngoscope to have a look. Nonetheless, he said he’d refer me to an ENT.

The ENT’s office called to say they had an opening in January 2018, and I took it. But, after about a month, the tickle stopped. The “lettuce” had disappeared. Not wanting to tie the province’s doctors up needlessly, I cancelled the meeting with the ENT.

A number of months later, I’m guessing it was the fall of 2018, I noticed a lump on the right side of my neck. I’ve had the odd swollen lymph node in the past; they’ve tended to disappear within a couple of weeks. This swelling didn’t go away though. It never hurt, but it did (if I remember correctly) grow and shrink and slowly grow again.

Eventually, I thought I should have the lump looked at. It wasn’t hideous to look at, and nobody, even my wife, ever said anything about it. I wear a beard, and sometimes my whiskers masked the lump. But I didn’t want it around forever, and knowing there was an outside chance that it might not be benign, I went to my GP again.

February 13, 2019 (Wednesday) Day 0
After asking questions, my GP requisitioned an ultra-sound of the lump.

February 20, 2019 (Wednesday) Day 7
I had the ultra-sound at Island Ultrasound.

February 21, 2019 (Thursday) Day 8
I met with my GP. The ultra-sound results (text below) were inconclusive, so he requisitioned a CT scan and a Fine Needle Aspiration (FNA) biopsy of the lump.

February 26, 2019 (Tuesday) Day 13
I had the CT scan at the Saanich Peninsula Hospital.

March 1, 2019 (Friday) Day 16
I had the FNA biopsy at the Jubilee Hospital.

March 6, 2019 (Wednesday) Day 21
I met with my GP who told me that the CT scan report (text below) indicated a couple of possibilities, including cancer of the lingual tonsils with an extension into a level II lymph node on the right side of my neck. The FNA report was inconclusive, but included the words “squamous cell carcinoma“. The FNA report also indicated the possibility of a branchial cleft cyst. Given that there was no conclusive diagnosis, my GP referred me to another ENT.

March 22, 2019 (Friday) 16 days later Day 37
I met with the ENT. He stuck a laryngoscope down my nose to have a look at the back of my tongue where the lingual tonsil is. As far as he was concerned I have “at least” stage IVA HPV-related base of tongue cancer. Unfortunately, he needs a better biopsy to confirm the diagnosis, so, with my OK, he did another FNA biopsy of my lymph node. He expects the pathology report of that biopsy back within three weeks, and we booked another meeting for April 12.

If the pathology report for this latest biopsy is also inconclusive, he will have to do another biopsy, but this time it would be done with me asleep. I assumed that he meant he’d biopsy the base of the tongue cancer, but it’s possible he’s talking about opening my lymph node.

March 29, 2019 (Friday) 1 week later Day 44

My wife and I met with my GP simply to ask a few questions. It turned out that he had just received a copy of the pathology report for the 2nd lymph node FNA biopsy. Again, unfortunately, the results were inconclusive. The pathologist had not found any cancer cells. I phoned my ENT the following morning to suggest that my ENT book the 3rd biopsy, an open biopsy, now, rather than waiting until he and I meet on April 12. The ENT’s medical office assistant (MOA) indicated that, although she would forward my request to the ENT, it was very unlikely that he would do anything until after that meeting anyway. After the call, my wife pointed out that the ENT undoubtedly has a queue of people just like me awaiting their chance, and that I simply have to stay in my spot in that queue. That’s really frustrating, but probably reasonable.

April 12, 2019 (Friday) 2 weeks later Day 58

We met with my ENT who said that, given that the 2nd FNA biopsy had been negative, we needed to do a third. That could either be to open my lymph node up and take another sample, or do an open biopsy on my tongue. Sigh. I said let’s go with what’s likely to result in actual cancer cells, i.e. the open biopsy, and that’s what’s now planned. This is taking so long. The MOA booked me in for May 22; that’s almost six weeks from now. Sigh.

Vacation

Because it’s likely that I’ll be unable to eat easily when I finally begin treatment, and because I enjoy eating, and because Katherine really would like a holiday and the house renovations are basically behind us, Katherine and I planned to take a holiday. We booked a couple weeks off in this 6-week period where I’m waiting for the open biopsy. We booked flights from Vancouver to London to Beziers, France, from Beziers to Paris, and from Paris to Vancouver. We booked a car for our time in the south of France, AirBnB’s, and hotel rooms.

Then, before we left, I sent a note to my ENT’s MOA, saying “by the way, my lump is growing and it’s getting a little more difficult to swallow, but I expect that won’t come as a surprise to <the ENT>”. Her response was that the ENT thinks I should have the open biopsy sooner…well, it’s not going to happen now, but I sure wish he’d made that decision sooner.

May 22, 2019 (Wednesday) 6+ weeks later Day 98

Finally, let’s do a real biopsy! Into the Royal Jubilee Hospital here in Victoria. Arrive at 1:00 PM. Get changed into a backless gown, a robe, and booties. Zip all underneath. Processing takes 30 minutes. Lie on a gurney for 1 1/2 hours, reading a book, while I wait for my 3:05 PM surgery.

Why does changing and processing take two hours? Well, they’ve got some questions to ask to ensure that I’m who they think I am, and that they know as much about me as they think they need to know. And, because most people coming in for day surgery are not as mobile as I am. I’m healthy (well, except for the lump on my neck) and I don’t need any special attention. I can get changed by myself and I don’t need help getting to the bathroom. Nursing staff don’t need to prep me in any special way. Most people take way longer to process. Oh, and some of them are an hour late. That’s why pre-op staff want you in two hours before surgery.

An operating room nurse stops by to ask some questions. The same questions.

The anesthesiologist (Nick) visits to ask some questions. Yep, the same ones that I’ve been asked first by an admitting nurse and then by an operating room nurse: what’s your name, when is your birthday, why are you in here today, are you allergic to latex or rubber, do you have any allergies, do you have any prosthetics, do you have any programmable implants (e.g. pacemakers), do you smoke, when did you last eat, when did you last drink something, how much did you drink, have you been to the bathroom lately, do you take any non-prescription drugs like cannabis. You can tell they don’t want to make any mistakes, and I appreciate that. Nick also asks a little more about my medical history, especially about any heart conditions. When we finish up he tells me I’m the healthiest guy he’s met today. Hey Ma, I got a gold star!

My ENT, who will be doing the biopsy pops by to say they’re just about ready for me.

At 3:35 I’m wheeled off to Operating Room 5. I haven’t been in an operating room since I was 3, and I don’t remember that experience. Just like on TV, there are big lights, an operating table, machines, and staff. They crank my gurney up to the same height as the table, I scoosh over in the way you do when you’re trying not to let the hem line on your backless gown rise to your waist, and they start work. The OR nurse puts a blood-pressure cuff on my right arm, and a pulse oximeter on my finger. Nick puts an intravenous line in my left arm. The OR nurse puts an oxygen mask over my face and tells me to breath. Nick says that I’ll be out in about 20 seconds and then I’ll wake up in Recovery. I’m paying attention to how I feel, because I don’t feel anything different, and I’m concerned that they’ll do surgery on me when I’m actually awake but they won’t know. Then my neck and head start to feel warm. Then I wake up in Recovery.

I’ve gotta say, the hospital really has this routine figured out. Their staff are great. They get their jobs done efficiently and seemingly happily. Lots of smiles all around, and no scrambling. Pre-op staff do their stuff, Operating staff do theirs, Recovery staff say “Hi, Ken, you’re in Recovery now. Can I get you a drink of water? Yes, it’s normal not to be able to swallow properly yet. Feeling better now? OK, let’s move you back to Day Surgery”. And off you go on your gurney again.

And then you wait in your screened off area for the grogginess to dissipate. Want a cookie, or a cracker? Cookie please. Oh, OK, a digestive; I guess that’s a cookie. OMG. My mouth has no saliva. I’ve got a mouth full of dry, grainy powder, and no way to swallow it. Why is my mouth so dry? Nurses check my chart and note that Nick sprayed the inside of my mouth with Lidocaine. Not only does that kill pain, but it temporarily deadens one’s saliva glands. OK, may I have some water please to wash this “cookie” down?

I’m released. It’s now 5:00 PM. I really thought the whole process would take much less time, like, maybe an hour. Who knew they’d take such care to ensure I came out healthy at the end?

My wife tells me that the surgeon called while I was still out to let her know how things had gone. He found “average cancer”. Goody.

May 24, 2019 (Friday) 2 days later Day 100

I send an email to my ENT’s MOA saying that, assuming I’ve got cancer, I don’t want to make an appointment to meet the ENT and discuss options. I say that, if the pathology report on the biopsy says that I have cancer, then I’d like an immediate referral to the BC Cancer Agency. I’ll be happy to meet with the ENT to discuss the reports contents, but really, let’s move this along.

I receive a reply a few hours later saying “done”; I’ve been referred to the BCCA. When I phone her, the MOA tells me that BCAA will call me after receiving the pathology report. So now we wait again. But at least we’re moving towards treating this thing!

June 5, 2019 (Wednesday) 12 days later Day 112

I called my GP to inquire whether he had received the pathology report for the open biopsy. It turns out he had. When I picked up a copy today, the date of the report is June 2. The report was sent to my GP, ENT, and to the BC Cancer Agency. My GP asked if I’d call him if I hadn’t heard from the Cancer Agency within a week. I didn’t ask, but I assume that he’s offering to chase them down on my behalf if nothing happens within a week.

The report says that the pathologist says the sample contained “Squamous cell carcinoma, poorly differentiated, p16 positive”. A second doctor reviewed “this case” and “agree(s) with the diagnosis of malignancy”.

The Microscopic Description is:

Sections show fragments of an invasive, poorly differentiated, non-keratinizing, squamous cell carcinoma, which appears to be arising from surface epithelium. The invasive carcinoma is diffusely and strongly positive for p16. The tumour invades included skeletal muscle and there is a suggestion of lymphvascular invasion. Perineural invasion is not recognized.

So, I have HPV-related base of tongue cancer. I don’t know yet what non-keratinizing means, and I don’t know which skeletal muscle it has invaded. Now I just need to wait for the BC Cancer Agency to call me to start the treatment discussions.