I have learned how to slow down time! Have a biopsy and try to wait patiently to find out if you’ve got cancer or not. Those seconds will tick by on the clock like they are hours. Days feel like weeks.
This is more of a personal post than you might be used to if you’re a regular reader to my blog, but I think after keeping this to myself for the last four months, I’m ready to share it with you. It is now part of my story and I could use your help.
It was a Friday evening near the end of October last year. I was sitting cosied up in bed with my book, having recently returned from a rather fantastic press trip to Aruba in the Caribbean. I was reading book 3 of the Outlander series, Voyager, where the main protagonists had also made the journey from Scotland to the Caribbean, albeit not on a ten-hour flight like I did.
They’d just been shipwrecked.
I casually rubbed my the side of my face as I read, my hand absently brushing down the fleshy part of my left cheek.
I found a lump.
Now, I tend to be a bit of a worrier at the best of times (seriously, I’ve spent the last few years working on not allowing my active imagination to jump from zero to sixty in 0.3 seconds), but I was determined I was not going to worry about this. I’m fit and healthy, I try and take reasonably good care of myself. There would be a non-life threatening explanation for this painless pea-sized lump in my inner cheek.
I had to wait until Monday to see my GP, who stated honestly, and quite matter of factly: “I don’t know what that is. Go see your dentist.”
So that Friday I went and saw my dentist. He thought it might be a blocked salivary gland, and said he was going to refer me to the ENT (Ear, Nose & Throat) specialist on the mainland. He also said he was going to write suspect cancer on the referral, but not to be alarmed by this. All would be fine. Big cheery smile.
So I didn’t worry. A few days later I received a phone call from the specialist’s secretary; I could be seen the following week! Alas, my potential appointment fell on a day I’d planned to be swimming with stingrays in Grand Cayman. I had to choose between an all-expenses-paid luxury cruise press trip to the Caribbean (can this blocked salivary gland wait three days until I get back?) or missing out on this once in a lifetime trip.
I went back to the Caribbean.
Come mid-December I still hadn’t received an appointment letter, so upon the insistence of my friends, I rang up the consultant’s secretary to enquire. Three days later my appointment letter came – I had another month to wait to be seen.
Fast forward to mid-January, and I’m really starting to worry. The lump was still painless, but it had doubled in size. Dr. Google said that was a bad thing. My consultant is based on the mainland and only makes the trip to Shetland twice a year, along with another colleague who also visits twice a year so I had to fly south for the appointment to meet him.
Unfortunately, heavy snow and road ice warnings were forecast for the entire day I was to travel. The airport is an hour’s drive from my house and I didn’t fancy a 4 am drive to the airport on untreated icy roads (I’m a worrier, remember?) or driving home again late that evening in the predicted snowstorm, so I booked myself into the Sumburgh Hotel for two nights. I’m glad I did.
It was the day before our wedding anniversary, so my husband and I treated ourselves to a really lovely pre-anniversary date lunch together at the hotel. Below, left, my Shetland salmon starter, and right, baked monkfish with pea puree. Absolutely delicious! (Always about the food, me, eh?).
The next morning I arrived bright and early for the flight, which ended up not departing until four hours later. The plane was broken. True story. The captain’s voice came over the tannoy, “Um, sorry folks, but there seems to be a technical problem. Tech support has asked us to try switching the aeroplane off and back on again.”
So they did.
It didn’t work. We all had to disembark and pile back into the airport lounge, which, incidentally, on this freezing cold icy morning with a snowstorm swirling around us, had no heating. The heating system was also broken. It was an incredibly cold three-hour wait while they woke an engineer up to come fix the plane.
That day in Aberdeen was a gloriously sunny one. I was taking part in an online Balance Retreat Challenge that week, and that day’s prompt was to buy myself a bouquet of flowers. I couldn’t fulfil that daily challenge prompt since I was travelling, so I snapped this photo of the sea buckthorn tree outside the Maxillofacial Unit at the Aberdeen Royal Infirmary instead. I liked the contrast of the bright orange berries against the blue sky. After, I walked up the eighty-million steps to meet my consultant.
He didn’t know what the lump was either. He suggested it could be a cyst, but there was also a possibility it could be a tumour in a minor salivary gland. He was going to refer me for an ultrasound and a fine needle aspiration biopsy (FNAB) back in Shetland.
The flight home was also delayed due to ‘technical difficulties’. Apparently, there’d been a MayDay on a flight from Orkney that had to turn around and go back, so the location of all the planes was wrong. I’d resolved then and there wasn’t going to be flying off Shetland anymore until they send up more reliable aircraft. The Northlink ferry it will be from now on.
22 days later, after trying (unsuccessfully) to stay away from Dr. Google and not panic myself, I had that ultrasound and biopsy. My heart sank when I saw the coloured patterns on the ultrasound screen (see, Dr. Google taught me how to read ultrasounds during my wait). The lump had a blood supply. It was officially a tumour.
A tumour in a minor salivary gland.
Tumours in minor salivary glands are incredibly rare neoplasms, and up to 85% of them are malignant, according to my research (there’s very little out there, to be honest). The UK incidence of malignant minor salivary gland tumours is 0.6 per million per year. That is approximately (rounding up for lack of half people) 40 people every year. If 85% = 40, then the incidence of a benign result in this case is 15% = 7? Seven people? The odds were not in my favour.
The cause: primarily radiation, like the old dental X-rays of the 80s and 90s. Or fallout? Maybe it was that dodgy microwave oven I got rid of a decade ago.
I had to wait an agonising week to find out the results of the biopsy, and they were inconclusive! The doctor had aspirated a blood vessel so they had no tumour cells to analyse. I might have cried. The biopsy would need to be redone, but the ultrasound clinic only happens once a month here in Shetland. I’d need to wait another three weeks or go south for it.
My consultant referred me for an urgent MRI. However, before you can get an MRI you need to get a blood test to make sure that your kidneys and liver can filter out the contrast medium if it’s used. To help hurry things along I hand-delivered my still-warm blood samples from my rural health centre to the lab in town. Good news, my liver and kidneys are good. An MRI was booked for two weeks later, in Aberdeen.
In the back of a lorry.
True story! Thankfully I didn’t need the contrast medium (I was worried about that), and the MRI itself wasn’t as bad as I thought it would be. Truth be told, I kept my eyes firmly shut so I wouldn’t get claustrophobic. That initial glimpse of how close the ‘roof’ was to my face as they slid me in the machine was enough to make me keep my eyes shut through the whole process. To keep my mind occupied I made musical compositions in my head out of the various sounds the machine made. The scan took about 25 minutes.
Rewind though, a few hours. I’d only made my 10:30 am appointment with 12 minutes to spare. The ‘Beast from the East’ that has been battering the UK with heavy snow and wind prevented my overnight ferry (I’ve opted to travel only via ferry now as it’s more reliable than the flights) from docking. The Aberdeen harbourmaster wouldn’t let us in.
We spent 3.5 hours pootling up and down the east coast of Scotland waiting for the tide to come in so we could dock. We made land at 10 am, I hopped in a taxi and we rushed through the snowy icy roads to the mobile MRI unit at Woodend Hospital.
From the mobile MRI unit I walked the 1.8 miles to the Aberdeen Royal Infirmary to meet my surgeon. En route I only nearly got hit by a car once (entirely my fault). A pause for the tree photo (it’s become a thing now), and back up the stairs for my appointment.
The MRI results showed that my tumour lit up like a light bulb under a T2 weighted scan, which is apparently a good thing (Dr. Google hasn’t taught me how to interpret MRIs yet), and it’s well circumscribed, which is also a good thing (it’s in a nice enclosed space and not spread out all over the place). There’s also no sign of anything untoward in my neck lymph glands, also a good thing. We’re starting to feel more positive here.
I was sent for another FNAB, but this time I swear they used needles you could drill oil with.
Back to the ferry, and for the same wind/tide reasons as that morning we couldn’t leave port until 10 pm. It was a rather bumpy overnight sail home in gale force 8. I’d spent 32 out of the previous 48 hours on the Northlink ferry.
Five days later (last Monday) I got the biopsy results: pleomorphic salivary adenoma.
I don’t have cancer! It’s benign! I’m one of those seven people. Surgery is still on the books, asap, but for now, it’s not malignant. It has the potential to become malignant if left, so they will be removing it, and how much of my face they’ll be taking along with it is yet to be determined. I’ve got another follow up appointment in Aberdeen next week and I’ll find out more then. For now, I can stop worrying about metastasis and try and do something practical and useful; a goal to work towards while I wait for my surgery date. I’m confident it’ll all be done and over with before the Relay date. If not, I’ve got an awesome team who can handle it all during my temporary absence.
It’s been an incredibly stressful few weeks, waiting for test results and trying not to imagine the worst. Playing Assassin’s Creed on my teenage son’s X-box has been the best distraction, I’ve discovered; you can lose hours in that thing! The thing is, I’m one of the lucky ones. One in three people in the UK will hear the words “You’ve got cancer”. That’s one person every two minutes.
Shetland hosts a biannual Cancer Research UK Relay for Life. A few days before my second biopsy results were ready I saw on Facebook that one of my friends had signed up for this year’s relay, and after a discussion with my husband and friends, we decided that we’d set up a fundraising team too, regardless of what the biopsy results were.
We’re getting our heads together to come up with some fun fundraising ideas, but if you’d like to help, we’d really appreciate a donation through our fundraising page: Elizabeth’s Kitchen Crew. We named it that because the folk on my team are often the taste-testers behind my blog. We’re still looking for a few more team members, so if you want to get involved too just give me a shout!
CANCER RESEARCH UK RELAY FOR LIFE SHETLAND
The Relay for Life is a team fundraising challenge which brings communities together to beat cancer. Over £1.1 million has been raised since the Shetland Relay for Life began in 2006.
We’ll be celebrating our fundraising in a 24-hour Relay, taking place on the 26th of May, where we’ll take turns to walk laps of a track, all day and night, to show that cancer never sleeps.
All the money raised will support Cancer Research UK, the world’s leading cancer charity dedicated to saving lives through research.
Every step we make towards beating cancer relies on every pound donated, so please donate today and help us to make a difference.