Saturday 7 January
Now sharp-eyed readers may have spotted that this diary starts the day before the last one was published! By way of a little back story, my doctors have been trying to get me on to a clinical trial featuring new immunotherapy treatments, on the basis that my first line of chemotherapy worked well initially and then failed completely, and the second-line chemo, while it did show signs of working, was proving pretty hard for me to tolerate. But getting on to clinical trials has proved more than a trial in itself!
By the time of the last column I’d been consented for a really promising trial and come through all the necessary tests with flying colours. And because my New Year’s Eve heart scare – actually it was a complete false alarm (and thanks again to the staff at University College Hospital in London for sorting me out on their busiest night of the year!). But because there was nothing to it and it preceded my being consented for the trial – no reason why it should affect my trial status.
But that brings me to Saturday 6 January. I got up not feeling too great but set about the Observer diary for the next day’s paper. Finished the column early afternoon and set off to Hertfordshire to see my boys. But by the time I arrived there my fingers were absolutely freezing cold and I was getting really powerful rigors (I think they’re called …) right into my core – so much so I couldn’t stop my teeth chattering. After about an hour under a very warm blanket with a hot-water bottle the symptoms abated but I felt very odd indeed. So we started taking my temperature – which failed to produce a single reading under 38C and plenty up in the 39s and even 40. Temperatures at this level are a huge red flag for someone undergoing chemotherapy because it can indicate a systemic infection – occasioned by weakened immune system, low white blood cell counts etc, which can overrun your system in no time at all. In other words temperatures in this range are definitely potentially life-threatening for many cancer patients.
So another call to the Royal Marsden MacMillan helpline – who for some reason were nowhere near as efficient as they were the previous weekend – and instructions to go to nearest A&E – in this case Luton and Dunstable. Again, I got there and appeared to have been put to the front of the queue – the national protocol has it that potentially “neutropenic” cancer patients (those with low white blood cell counts) should be on intravenous antibiotics within an hour – but wasn’t seen for nearly 90 minutes. However once I was seen they were absolutely amazing. Blood tests, painkillers, fans to cool me down (temp still 39.4C) a bed on an intermediate ward and intravenous antibiotics and fluids in no time at all.
Sunday 8 January
On the upside it turns out according to the consultant I saw (yes L&D turns out consultants on Sunday mornings – and good for them!) that I do not have “neutropenic sepsis”, but I do have a “small pneumonia” at the bottom of my left lung. Which is a bit of an odd one because I had no indications of any signs or symptoms until the shivers started on Saturday early evening. Anyhow, signs are that the (very) strong antibiotics are overhauling the infection and that all being well I’ll be let out Monday afternoon with six days’ worth of oral antibiotics. Actually while I’m hugely grateful for the antibiotics they really don’t seem to agree with me – stomach pains and no appetite – again!
Monday 9 January
Still feeling antibiotic rotten but doctor comes at 2pm and says I can go. I just have to wait for my drugs from the pharmacy and for the final paperwork to be signed off. To cut a long story short – and remember this is a hospital with capacity issues – three hours later I was still sitting on my bed waiting. So late in fact that I had to do my regular interview with Radio 4’s PM programme from the ward! Can’t fault the treatment but these kind of system delays, especially when the staff and the NHS are under so much pressure, must be driving everybody mad!
Tuesday 10 January
Back to Marsden for blood tests before what might well have been my first dose of immunotherapy trial drugs on Thursday. But oh no! Unless my pneumonia infection has basically gone away then I can be excluded from the trial. And because this episode has occurred after I was consented to, the drug company (trial sponsors) has to be told about it. Medical team clearly a little exasperated – with me I think! What else can possibly happen? They’ve got me a spot on a high-profile trial – actually a relatively rare spot at that (120 places available via 50 centres in the US, Australia and the UK) So they’re clearly worried that if the sponsors start to feel I might be a bit flaky or especially sensitive to infections etc etc, we might lose our rare and valuable place.
For me this really is becoming stress city – which isn’t just psychological but produces actual pains in my stomach and oesophagus. What if I lose out on this trial as well? When might the next one come along? What will have happened to me in the meantime? So no treatment on Thursday – one of the genetic tests is not back, apparently.
Thursday 17 January
Back to the Royal Marsden for blood tests and good news! Blood tests all good – no outward sign of infection and I’m feeling OK. So nothing to frighten the horses at the trial sponsor there. But now it appears their “medical monitor” – in Poland apparently – has to say yea or nay to my inclusion in the trial. Stress levels definitely rising all round now. All data sent off and consultant Dr Starling firmly of the view that there are no solid grounds for excluding me.
Wednesday 18 January
Ordinarily this should be BBC Media Show day. But the stress is really getting to me – and as I say it requires painkillers to control the effects – so I decide not to do the show this week. BBC as always was amazingly considerate. Another issue now bubbles up. Can the pharmacy prepare the drugs in time for treatment tomorrow – still no word from Poland. At 4.30pm I call the senior research nurse Tracy to see if there’s any news. She says no. She then calls me at 6pm to say we still haven’t heard. Now, no one’s saying this – least of all me – but everyone’s thinking: is there a problem?
By 7pm Wednesday – the night before the treatment is supposed to start – and Tracy calls to say I’ve finally been accepted and “randomised” into that part of the trial who get both drugs. She’s thrilled. But all I could do was cry.
Thursday 19 January
First doses of nivolumab and GS-5745. The lists of side effects are long and some are potentially fatal but fortunately not that often – so fingers crossed on that front. But the thing I noticed most? They don’t make your hair fall out – so goodbye to the amazing Paxman “Coldcap”!
The chemo’s too much, but getting on a clinical trial is gruelling enough
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