Apologies. I had planned for this to be a short post about my bone scan but then it turned into a whopper ...
Just to recap, the last piece of this enormous puzzle was going to be deciding what tablets I should (or shouldn’t) take for the ongoing management and prevention of breast cancer. The choice needed to based on the state of my bones and so I got sent for a DEXA scan.
This required my first ever (and hopefully last) trip to Northwick Park Hospital. What an absolute shit-hole. It’s only redeeming feature is a multi-storey car-park ... which says a lot.
Not all NHS hospitals are grim - far from it, Queen Charlotte’s and The Royal Marsden are very nice - but you can always tell what it’s going to be like when on the outside concourse you see some old girl in a hospital gown, wheeling her drip in one hand and puffing a cigarette from the other.
Anyhoo, scan done and I went to see the oncology team at The Royal Marsden to get the results and discuss next steps.
I should say, going to The ‘Marsden again also gave me the heebie-jeebies. I go for an annual mammogram but that’s in a different part of the hospital. Sitting alone in that familiar outpatients’ room was horribly unsettling and I couldn’t help but have a little cry behind my hospital-issued Covid mask.
Worse still, the results showed that my bones are fooked. Really badly diminished. I knew from my last two scans 2015/2018 that I had osteopenia in my back and hips but the significant decline into full osteoporosis all down my spine and the top of my left femur was totally shocking. My bone profile is so much worse than anything they’d expect for my age.
So, drugs. My initial thinking was that, as Tamoxifen would now (perversely) strengthen my bones post-menopause rather than weaken them like it did before, that might be my best bet. But no. While I have no womb, there is still the (although very unlikely) chance that I might have rogue womb cancer cells in my system, and the Tamoxifen could feed them to crop up as a secondary elsewhere. Bugger.
Which leaves Letrozole: Letrozole is an aromatase inhibitor. While I no longer have ovaries, my body can still create hormones in my adrenal glands. Letrozole lowers oestrogen levels by stopping an enzyme (aromatase) in fat tissue from changing other hormones into oestrogen. Sounds good? Well, not really. It also comes with a host of side effects, the most common of which are: dizziness, high cholesterol, fatigue and deep muscle pain, as well as joint pain, bone thinning and fractures
. Double bugger.
The recommendation is therefore that I take Letrozole for 2-3 years but only after I have taken Alendronic Acid for six months to try and put some strength back into my bones. I’ll actually have to take the Alendronic Acid for significantly longer (and throughout the Letrozole treatment), alongside a lifetime of Calcium and Vitamin D supplements.
To support this decision, I needed some blood tests to
- check my current calcium and vitamin D levels and
- check – with my permission – that I definitely don’t have any of the BRCA related genes.
I’d gone through the process of having blood taken for a BRCA test about three years ago but ultimately didn’t proceed. I won’t go into the reasons why not here but the main one is that I really genuinely don’t think that I have it. Nonetheless, this time I have said yes. I’m confident it will come back negative but – if it doesn’t – I’d rather my family members were fully aware of any potential cancer risk and hopefully avoid some of the issues that I’ve had.
So bloods … Anything vein-related with me can be a nightmare. I am a little lady with tiny veins. Add to this the fact that, post breast cancer, I can only have blood taken from my left arm – the same arm that had its veins horribly burnt with chemo damage – and you can appreciate that blood tests/cannulas are not much fun.
However, even by my usual standards, this week was quite the drama. To cut a long and painful story short, it took three separate nurses about nine attempts between them to get blood out of me. It was quite surreal. Even with the needle very visibly right inside my vein, no blood came out. Nothing! It was like I was the undead …
Fortunately, they were finally successful but it was all a bit traumatic and so I prescribed myself an enormous slab of lemon and raspberry cake from the Hummingbird Bakery on my way back to South Kensington station. I knew I was onto a winner when the lady behind the counter, on taking my order, slavered enviously under her breath: “ooh, that’s goood ...” And she was right. It was.
Because, on the back of the osteoporosis news, I really have needed some cheering up. People are very kind and tell me that they see me as a resilient can-do sort of person - and, for the most part, I think that I am. However, there are some things I simply can’t change and this has made me incredibly sad. I’d already lost and given up so very much as a result of my first cancer diagnosis, treatment and surgery ... And now that immense sense of loss has been revisited and amplified.
To be blunt, while I look the same on the outside, my
insides are completely fucked. If I was a car, I’d have been stripped for parts by now - and even then it would be slim pickings. There’s not an awful lot left that works properly
any more …
The fact is I’m 47, fully menopausal with the fragile bone density of someone much, much older. Moreover, removing the ovaries has considerably more far-reaching physical and emotional effects than menopause alone. And those chemical changes/deficiencies are irreversible for me because I can’t take hormone supplements.
Add to this the constant potential threat - however tiny that may or may not be - that either or both of the two cancers could return: it’s just really, really shit. So, yeah, I’ve been on a bit of a downer this weekend.
On the plus side, being back under the care of the ‘Marsden means that I can access their psychological support team. The oncologist is putting in a referral for me so hopefully I’ll hear something in the next week or so. Even if there is a waiting list (I know there was last time), I’m in the system.
Another source of recent anxiety and sleepless nights has been my return to work. I’ll log back on tomorrow and, up until ten days ago, I was very positive about this. Now I’m not sure.
My major concern is the speed at which I am expected to ‘bounce back’ and be fully operational after a 7-week absence. I'm also hoping that there isn't a two month backlog of work waiting for me.
Because, let’s be honest, I didn’t just sprain an ankle or have my appendix out. This was a major life-changing surgery, a second cancer diagnosis, and a permanent shift in my physical and psychological make-up.
The ongoing fatigue is considerable and that’s even before I try to get my head back around international branding, budgets and marketing campaigns. Of course, I know my absence has been hugely disruptive to the business but it’s not been massively convenient for me either ...
The fact is, the physical fatigue from the hysterectomy alone lasts much longer than the 6-week surgical healing time - sometimes up to a year. Overlay that with the wider and ongoing psychological impact of what has occurred (and still needs to be addressed) and there’s not much ‘mental stretch’ left to give when it comes to work-related stress. I hope some consideration will be given to that.
But, let’s still try to end on a high. In just one week, (fingers firmly crossed!), those of us in England will be able to meet in groups of up to six indoors and with much larger groups outside. I can’t wait!
Already my social calendar is filling up and by the end of May I hope to be able to see my Mum who I've not seen since Christmas. Before then, various London park and garden gatherings have been arranged and longer-term (post 21 June) plans for assorted trips away.
Right now, as we emerge from this Covid cloud, I think every one of us needs to feel there’s something good coming over the horizon. I’ve certainly had a few false starts this year but, fingers crossed, we’ll all come together and celebrate just how far we’ve all travelled - maybe not literally, but certainly spiritually and emotionally.