The Thursday before last, I went ahead with another round of treatment for the advanced breast cancer I was diagnosed with last April. Also, I’m ok to leave the house as long as I stay clear of other people while I’m out.
Those are the two key pieces of news I have to report since my last post. Both pieces of news are good. Proving once again that everything is relative, I am aware of a substantial number of other women who’d be happy to be in my shoes. Every case is different, but scans and treatments are being postponed or cancelled across the country and many women are still “shielding” at home while the coronavirus continues its spread.
I had blood taken for testing on the Wednesday morning at the local hospital where I’m being treated, in Tooting in southwest London. Face-to-face consultations are not happening to reduce the risk of the virus spreading so the consultant called me that afternoon to discuss the results.
Here’s a synopsis. My bone marrow function in general is fine, which means the treatment is still working on that front, but that damn tumour marker is continuing its seemingly inexorable rise. We can’t pin down what’s causing this. There’s clearly cancer activity going on but we don’t know where. It didn’t show up on recent scans and I have no new symptoms that might suggest to where the cancer is spreading or has already spread but is not yet detectable. I’m a bit dehydrated – “drink more water” – but my neutrophil (infection-fighting white blood cell) level is just good enough to go ahead with the next monthly – or rather 28-day – cycle.
That’s treatment round 12 under my belt. It’s hard to believe that it’s almost a year since the oncologist called to say my blood test results had come through and that it’d be “crazy not to follow up”. Follow-up showed that the primary breast cancer for which I was treated a few years ago had spread to my bones and infiltrated my bone marrow.
The plan for now is that I stay on my current treatment until there’s a concrete reason to come off it. There’s no point changing treatment if you don’t know what it is that you need to treat. And, very importantly, it’s still working on the bone marrow function front.
In the absence of any new symptoms, we’ll keep doing regular scans – coronavirus pandemic permitting – so that we pick up promptly whatever it is that’s causing that tumour marker to rise. In the meantime, my blood is being tested to determine whether I can metabolise a chemotherapy drug called capecitabine, a likely future treatment. On the one hand it’s pretty disconcerting to think that we’re now essentially looking out for bad news. On the other hand, it’s good to be prepared. Even if I can metabolise it, though, capecitabine will not necessarily be the next treatment; that will be determined by where the cancer spreads to and to what extent.
The waiting area at the phlebotomy unit was more or less empty when I turned up at St George’s on the Wednesday morning. Sometimes there can be dozens of people waiting – although as a cancer patient, you get to skip the queue and go straight in. I don’t know whether the lack of people was a coincidence or whether they’re cancelling non-urgent blood tests. Also, to enable outpatient cancer patients to avoid any unnecessary human contact, the oncology day unit has been moved from its usual home on the third floor of one of the main hospital buildings to a stand-alone building in the hospital grounds. That was very reassuring.
I’m very relieved that for now at least the pandemic is not affecting my treatment. I’m a member of a breast cancer support group on Facebook and women on there are having scans and treatment and operations cancelled or delayed. Some are accepting of whatever decision has been taken but others are angry and upset. Healthcare professionals are having to make some very difficult choices but policies seem to vary from place to place and that really doesn’t seem fair.
I also want to say that I’m really not ready for all these platitudes that are flying around, like “the earth breathed and the earth healed” and “this was the time parents became teachers” and, worst of all, “everything will be alright”. I know why it’s happening but it’s not for me.
I appreciate the beautiful birdsong and the fact that the air is cleaner. I love the Thursday evening clapping for the NHS and the lone trumpeter in Hebden Bridge. I love any number of other things that have come out of the crisis (the creativity and imagination on show is fabulous) – but there are many people for whom it’s already not alright and there are many more for whom it won’t be. And I’m not just talking about the people who’ve died and their friends and families. Life will be different, and we don’t know yet know how different, but for many people it will never be the same – and not in a good way.
On a more positive front on a personal level, the oncologist said during her phone call with me that she’s happy for me to go out – as long as I’m sensible and take all the obvious precautions. Walks in the park are fine as are cycling and running, but shopping isn’t, as that would entail going inside and being among people and putting myself unnecessarily at risk. That suits me fine!
As time had gone on, I’d more or less come to that conclusion myself although I hadn’t yet ventured out. It was good to hear it from someone who knows a lot better than I do. It was followed a couple of days later with a text from the NHS Coronavirus Service telling me to stay at home for at least 12 weeks “unless a healthcare professional suggests otherwise”.
That was over a week ago. I’ve been out for a couple of walks on the common at the bottom of the street and I’ve done one run. It was my first since February 1st and my legs have only just recovered.
I’m not taking any chances, so I’ll stay very local. I don’t really even feel like going out on my bike. Out of the three activities, I feel this is the one where you have least control over your surroundings. I know it doesn’t work like this but my thinking is that I’ve not put all this effort into living well with incurable breast cancer only to be felled by this friggin’ virus.
I may not have been cycling but that doesn’t mean I haven’t been pedalling.
Last Sunday, one of the two cycling clubs that I’m in – the Balham Cycling Club – organised a virtual fundraising event for St George’s Hospital Charity. The idea was for those members who have access to an exercise bike or turbotrainer to cycle collectively the distance of the UK – from Land’s End in Cornwall to John o’Groats in the very north of Scotland – and to raise the distance in Pounds sterling (1,407km/£1,407). The response on the day was so incredible that we decided to do the return leg too. In the end, 45 of us took part, we cycled more than three times our original goal, and to date we’ve raised more than £5,600 – almost four times the amount we set out to raise originally.
I reckon my contribution – done in three stages – was 80km (50 miles). It was a heartwarming and humbling event and l was proud to be part of it.
Thanks for reading. Stay well and stay safe.