Wednesday 2 November
It’s another big week for me and my cancer (aren’t they all?), but it’s Wednesday so it’s Media Show day, and things are really hotting up before the US election. We’ve got a good show. I’ve managed to persuade Piers Morgan – as one of the few British journalists who actually knows Donald Trump – to speak to us from his car while he’s filming in Florida for ITV. And he’s really interesting about what the media have and, critically, haven’t understood about the Donald. Piers is also one of the people from the worlds of journalism and broadcasting – many of whom if I’m honest I really can’t claim to know especially well – who’ve come forward to make my life easier (whether they know this or not) by offering good wishes and positive thoughts. And if my experience is anything to go by, if you know anyone with a cancer diagnosis – don’t hesitate – just drop them a line to let them know you’re thinking of them. Genuinely appreciated all!
The show went well, I think, but I’m still suffering from occasionally quite acute fatigue – I blame the radiotherapy, as I didn’t get anything like this in the course of seven cycles of heavy-duty chemo. Also since the radiotherapy, I’m really only able to sleep on my back (earplugs, earplugs, my kingdom for a pair of earplugs, can I hear despairing partners muttering?). The doctors reckon this might be because of the impact of the radiotherapy on my diaphragm, which might’ve been “clipped” by the high-energy x-ray beams.
Anyhow, all’s well with the back-sleeping malarkey except that at around five on Thursday morning I get the first signs of an unmistakable – and potentially very painful – condition. Kidney stones! I was first diagnosed with them more than 25 years ago and every now and again since a new one would get stuck in my kidney and kick off a bout of “renal colic” – the name given to the excruciating pain that can come with them. This time a couple of painkillers see it off – but stand by, if you can face it, for what happened a few days later…
Thursday 3 November
My first day on the new treatment – paclitaxel and ramucirumab (the one I’m having to pay for) and my first visit to what one of the nurses laughingly described as “business class”, otherwise known as the PPMDU (private patients medical day unit). So at 9am there I am being shown into the unit, discreetly hidden from the regular NHS day unit I’ll be visiting later for my paclitaxel infusion – and guess what? It looked very similar to its NHS equivalent; and while we’re on the subject of business class, the seats were actually identical! Staff were great, of course, and I got my first dose of the very expensive (£12,000 plus per cycle) ramucirumab, which the NHS currently won’t finance.
The treatment was first class and, as I’ve previously indicated, I’ve no problem with the principle that I should pay for it, as the NHS should be protected from additional unfunded treatment costs I choose to avail myself of – but I still struggle with the Royal Marsden taking a 20% markup simply to supply an already very expensive drug – which, by the way, is already standard treatment as part of second-line chemotherapy for my cancer in the US – and charging a private patient’s day rate as a whole day for a treatment that takes just over an hour. I’ve taken to calling it my very own “cash for treatment” scandal. I hope they’re putting the money to good use, which is perhaps something worth looking into.
Anyhow, having received my ramucirumab, I was escorted back downstairs to rejoin the rest of the human race in the NHS MDU. And do you know, aside from having identical seats to “upstairs”, I think there might actually be more space down here? But time to get reacquainted with the “cold cap”. This, as its name suggests, is a rubber cap attached to a refrigeration system that rapidly cools the wearer’s head, thus reducing the risk of hair loss that some chemotherapy drugs otherwise more or less guarantee. It doesn’t work for everyone, but it really worked for me over seven cycles of chemo.
And to be honest, a few quizzical looks from other patients more used to seeing women using it and the endurance test that is the first 20 minutes of wearing it as it literally freezes your scalp (think ice-cream brain freeze and multiply by 10) was a very small price to pay. Of course I’d forgotten how hard it would be and very nearly took it off. But in the end the name of the new machines they now have at the Marsden, Paxmans – true! – and a well-timed traquiliser from the staff got me though it. And, so far, I still have hair – on my head.
Saturday 5 November
Today would turn out to be one of the most difficult since I was diagnosed back in March – and none of it to do with my cancer or its metastases directly. For a start, I have been suffering with constipation (thousands of cancer patients do) which, once it gets to 5 or 6 days – as it has for me – can become almost painfully uncomfortable. Then there was the discomfort under my right ribs – put down to my liver playing up or, more likely, another hangover from the radiotherapy. And to cap it all was the recurring renal colic from my age-old kidney stones and their appalling sense of timing. And here’s the twist. The painkillers – co-codamol, a mixture of paracetamol and codeine – tend to work less effectively over time but, critically, make you more constipated!
To cut a long story short, Saturday was a bit of a perfect storm: in increasing discomfort and waiting until enough time had elapsed to allow me to take more painkillers which a) no longer quite do the job; and b) make the you-know-what worse. As a result, I can’t leave the house and have no desire to eat or drink. And it’s the latter that’s set to provide the biggest twist of all …
Tuesday 8 November
Due at Marsden for pre-chemo blood tests preparatory to the next dose of new chemo due Thursday. By now, after such a dreadful weekend, I can add extreme fatigue to my list of ailments – shower, dress and have to sit down, slightly breathless, for a rest. Blood tests show sharply declining level of platelets, which means no chemo for me unless they recover. Doctor also spots that my blood pressure is pretty low – and I get light-headed when standing up and so prescribes intravenous fluids to help.
Wednesday 9 November
Up at six, looking forward to Radio 4 Media Show today. Unfortunately, same thing happens – extreme fatigue and dizzy when I stand up. Decide Media Show might not be possible – the BBC, by the way, have been nothing but support itself over the course of my cancer travails. Return to hospital for more IV fluids. I think these are probably the longer-term consequences of the radiotherapy taking my appetite for food, and critically, drink away, and my simply not drinking enough for far too long
Thursday 10 November
Back to Marsden to see whether platelet levels have improved sufficiently for treatment to proceed. Not only have they gone down further – something my consultant Dr Starling and her team are unsure of the cause of – but my blood pressure’s up and down like a yo-yo.
As a result, I was admitted as an in-patient to the Marsden to try to get these things sorted out and see what might be done with my kidney stones, which are still giving me gyp!
And three days later, as I write – intravenous fluids and antibiotics and a host of new medications later – that’s where I still am.
PS: the ward staff are great and the food’s not bad at all.
My cancer diary: ‘One of the most difficult days’
