Yes, folks, it seems a long time since I updated this. It’s been a very exciting month (NOT). Another wedding anniversary, this time passed with no acknowledgement which I found rather hurtful, having taken my husband to his favourite restaurant on the Friday before, Explanation - he “can’t celebrate”. So that’s it? Another example of how he is so wrapped in his grieving that he forgets that I’m the one with this effing disease!
Rant over. The fact is, we have different responses and neither can fathom the other. For now I am still pragmatic. I can’t change anything so I just worry when I have to. I don't spend hours dwelling on what is going to or could happen. I am however being practical, trying to sort out my finances and work out what I need to have sorted. I ordered a book for my husband and executors called What to Do When I Die and it looks very helpful. Unfortunately D saw the order and it’s sent him even further down the path of misery. FFS, we know it’s inevitable. Maybe if I were more ‘ill’ it would make more sense to him but, right now, things are running relatively smoothly apart from 1. Bouts of lethargy that I know are fatigue and 2. What I’ve come to call constirrhoea, where my body can’t decide whether I’m constipated or have diarrhoea and compromises on fearful cramps and hours on the loo. There is no room for prudishness with cancer!! I must admit this cycle has been rather trying and pretty exhausting.
My last two appointments have been telephone consultations, the first by choice; the second, I am mortified to admit, by sheer carelessness on my part. I received my appointment letter and saw 11.30, put it in my diary and that was that. Dr U, 11.30. Only it actually said Wednesday and I didn’t notice because my appointments are always on Friday. So at 12.15, I got a phone call from the head of the team asking if I was aware I had an appointment at 11.30. As I said, I was mortified. Dr K wasn’t bothered. As he said, he was able to write several reports, which was kind of him but to miss a precious NHS appointment and then be given a full half hour telephone consultation is rather generous.
So I learned that my CT scan is clear, with no sign of spread to any organs - yet. My bloods are still slightly raised but within the normal range (they have always been way lower than any of your readings, thanks to capecitabine! Yes, you have blood markers too, average healthy adult scores around 35; I’ve been at 18 for months but am now up to 28). What I don’t want to see is further increases because that will mean capecitabine has run its course and I must switch to a baldy treatment. That’s when my anxiety will set in. Not for the hair loss - I’ve managed that before and it grows again (only, how can it grown again when you have the treatment indefinitely?) but for the stress of weekly hospital visits and the serious fear of the side effects. Oh, and my MRI report wasn’t back and that’s the indicator because they will be able to measure the change in my tumour and decide if the slow progression is still slow enough. So, I’m not quite Stable Mabel but I’m doing ok.
I guess the highlight of this time has been the heatwave. Having reported a reading of 38C, my brother firmly put me in place by saying that Melbourne last year register 54C. But they are prepared for it - air conditioning! Me, I had a rotating fan and cold flannel. I spent my time wearing the flimsiest kaftan (me? A kaftan??) reading on the sunlounger under the trees where, actually there was a tiny and increasing breeze. I got a lot of reading done.
Another highlight was that my friend Anne’s granddaughters, well, the 2 older ones, and their two friends organised a bake sale and raised £120 for Maggie’s. Apparently they made fliers on lampposts, used social media and baked all sorts of delicious cakes and buns, along with making lemonade, and set up stall at the end of their cul-de-sac. They were then invited to the Maggie’s Centre at St James’s and photographed with a giant cheque. Since it went onto social media, I don’t mind PROUDLY sharing it here. It kind of chokes me to think that they were thinking of me, especially as I hadn’t seen them since lockdown. However, I met up with them in the local park last week - and they were so shy, they could barely look at me at first!! So I took a photo of what was left of their very sophisticated drinks whose name escapes me - turned out it was hot milk with a dusting of chocolate so it looked like a cappuccino.
On the downside, I had a horrid experience in the park. D was in the dumps, having spotted that book title, and refused to come with me so I had to manage walking on my own. I got very tired just walking across the car park and down some steps, then I had to go across an underpass that is like an old railway arch. The ground is timber, a bit uneven in places. Manoeuvring across that was a bit dicey and I wobbled a bit, then I trod on my own foot (the neuropathy at work) and I heard this laughter, followed by “Is she drunk or what!” I leant on the bridge getting my breath back and saw it was two raucous teenage girls I once could have flattened with a look (in the classroom), with their families. I felt so humiliated and vulnerable and at the same time wanted to put them in their place but, armed with their phones, I’d have been plastered over social media as the drunk in the park! What has happened to kindness? As a teenager, at worst I’d have stayed silent, at best I’d have gone over to see if the woman was ok, drunk or not. Now people just seem to feel it’s ok to be callous and take the piss. I so wish something could be done about my balance, I’m sure it’s just that my brain needs a bit of retraining, but, to be frank, as soon as departments see Stage 4 cancer, they aren’t interested - it’s hardly a good use of limited resources. I guess I could consider seeing someone privately - that’s only just occurred to me - I am so wobbly when I’m tired, I’m covered in little bruises from walking into door jambs.
On the bright side, I had some reminders of childhood. David and I used to go and collect bullrushes from the local pond (for heaven’s sake, no worries about health and safety then, just whether we got our socks and shoes dirty. We did) and I haven’t seen any in years. And I also spotted Cuckoo Pint, something from Brownies or Guides; anyway, I knew my wildflowers. That lifted my spirits, gave me time to get my breath back, and continue the trek to the café!
Peer. They ARE there!
