Mother of God, the mouth ulcers

Spoiler alert: This blog includes multiple gratuitous references to a recently concluded and very popular UK TV series about police corruption.

Jesus, Mary, Joseph and the wee donkey, if it’s not one thing, it’s another.

The pain I’d been having periodically in my joints disappeared overnight when, a fortnight ago now, I started on my first cycle of the new treatment I’m on for advanced breast cancer. Also – and what a relief – the pain I’d been having in my feet for the past few months eased up massively. Now we’re sucking diesel, I thought. Then wham, I get blasted with two horrendously painful mouth sores – or more precisely one mouth sore and one tongue sore – within days of starting the new drugs. God give me strength.

Mouth sores are a very common side effect of everolimus, one of the two drugs I’m now on (Document A in your folder). I’ve written before about how painful cold sores can be (Document B in your folder). Well mouth sores are like that, except they’re on the inside of your mouth and they’re even more painful. Just when you’d started to sleep well again as a result of the throbbing in your feet having eased off, you wake up at 4am from the pain of these mouth sores. The discomfort when eating is such that I’ve had to tell the boss, who does most if not all the cooking in our house, to stop putting vinegar in the salad dressing. Mother of God.

Has it been so painful that I’ve sworn? No comment. Or cried, even, from frustration as much as pain? No comment.

I’d been given mouthwash to prevent mouth sores from developing and/or to alleviate the pain once they do develop. I’d been following the instructions to the letter, to the letter, I tell you; who knows, maybe they’d be even worse if I hadn’t been using the rinse.

As for the sleeping tablets I was prescribed at my last appointment, I’ve used them twice. The first time I didn’t notice any difference; the second time I slept for nine hours (getting up once for the loo and half-waking when my husband got up). Now we’re cooking with gas, I said to myself when I realised how long I’d slept for.

You’re monitored closely during the first month or so after you start on everolimus because of the potential side effects. The monitoring involved a mid-cycle review yesterday with my oncologist where we discussed how things were going and she gave me the results of the MRI scan of my liver that I had recently.

As I’ve said, for various reasons the consultant wasn’t convinced that the metastatic breast cancer I have in my bones and bone marrow hadn’t spread to my liver. Now many of you reading will know that I’m a bit of a grammar pedant. I would therefore like to point out that this is one situation where two negatives don’t make a positive. The consultant didn’t necessarily think the cancer had spread but there was enough concern that it might have done that she thought an MRI scan was merited. It came back clear; no spread to the liver at this time. Pleasing news.

We also went through the results of the blood tests I’d had done the previous day. My tumour marker is continuing to rise and my haemoglobin level has fallen slightly. The rising tumour marker means my cancer is active; it’s early days, but one hopes the drugs I’m on will dampen down that activity. As for my haemoglobin, if the level falls much more, we could be looking at another blood transfusion. I’ve already had two since I was diagnosed with secondary breast cancer two years ago now (Documents C and D in your folder). I’ll have blood tests and see the consultant again in two weeks’ time, at the end of this first cycle of everolimus (brand name Afinitor) and exemestane (Aromasin). We can but hope but it seems unlikely that I’ll get as long as out of this line of treatment as I did from the other two. I was on the first line for a year and almost a year with the second.

I’ve been prescribed a stronger, steroid mouthwash. Let’s hope that between that and the one I’m already using – and also the ice lollies and chunks of chilled melon and the home-made mouthrinse of salt and bicarbonate of soda – they help alleviate the discomfort from the two sores I currently have and from any future ones that might appear. If the mouth sore situation doesn’t improve, it’s possible we’ll reduce the dose of the everolimus tablets for the next cycle.

For the purpose of the tape, the consultant and I once again discussed future scenarios, with me voicing concerns I had about various things and asking questions that deep down I knew were impossible to answer in any definitive way.

As for the lesions I had removed a few weeks ago from my right calf and the sole of my right foot, I get the stitches out next Tuesday and I have a teleconsultation a few days later when I’ll find out the results of the biopsies they did on the removed tissue.

I’m looking forward to getting back on the bike and to playing tennis once the stitches are out. Running had become quite difficult for me (Document E in your folder) so I’m not sure I’ll start that again, despite that fact that Parkrun – the free, timed, mass-participation, volunteer-led 5k run that pre-pandemic took place on Saturday mornings in parks around the UK and indeed in many other countries – is meant to be starting back in June. I ran my 100^th Parkrun in January 2019 (Document F in your folder) and managed one more before the very first lockdown two months later. Despite my doubts about running, I would definately (😉) like to do at least one more Parkrun post-pandemic.

For those still in the dark over what TV series I refer to at the start of this blog and from which I’ve used multiple lines throughout, it is, of course, Line of Duty. I was helped by the fab bingo card that some joker put together.

None of what’s been going on cancer-wise has prevented me from enjoying the gradual lifting of the pandemic-related restrictions. That said, the novelty of meeting up for a drink and a meal in beer gardens when the temperature is in single digits is starting to wear off somewhat. Bring on May 17^th, when we can socialise inside again. Rather excitingly, the boss and I have booked two nights away at the beginning of June. It’s only an hour or so’s drive from the house but we’ll catch up with friends we haven’t seen for many, many years. It’s the first of many UK-based trips we’re hoping to be able to make over the next few months and beyond.

Briefing over, readers. As you were.

PS Thanks to the friends who contacted me after I posted the original version of this to point out a couple of obvious Line of Duty-isms that I’d missed! They have been duly added.