Sunday 14 November 2021

Closing doors, looking for new ones ...

Hello! Time for another round-up of news. I’m trying to save the blogging for when I have something to share, so apologies if this makes for longer reading. (And this will probably be my last blog this year).

In the last week I have been back to both Queen Charlotte’s (QC) and to The Royal Marsden to speak with my respective uterine cancer and breast cancer teams. 

The appointment at QC actually turned out to be an administrative error as I’d only been in five weeks ago but, as I was there, I asked if I could speak with a Macmillan Cancer Support nurse. I’m so glad I did. We had a good long chat about how I’m feeling about things - (more below) – and she’s also got me an appointment with a specialist practitioner (in early December) to talk through some of the more specific physical issues that I’m having.

As for my ongoing breast cancer management via the ‘Marsden, after six months of taking alendronic acid to bolster my weakened bones we were ready to discuss aromatase inhibitors to stop my body converting androgens into oestrogen.

In short, I’ve decided that I don’t want them. Yes, my body can still create oestrogen in minimal amounts, and that’s a small risk, but the pay-off for this short-term suppression (I would only take them for 2-5 years) would be worsening osteoporosis, diabetes and more severe menopause symptoms, alongside a host of other debilitating side effects. No thanks.

I want to live and enjoy my life, now - however long that may be - and a short-term treatment that could have long-term negative impacts is not an option I will choose.

To be candid, I just can’t stand to have any more treatments that will continue to erode the core essence of me. I have been through so much, and given up so much, over the last (nearly) ten years that I need some respite.

Fortunately, the oncology team were completely in agreement.  So, while I'm still under their care for annual monitoring (i.e. mammogram) for around another two years, I won't be back to speak to any doctors unless I make a specific request.

Normal - what's that?

Even before these appointments, I had been feeling very down. People always talk about life getting back to ‘normal’ after a significant life event but often it never really does. In truth, you create and adjust to a new normal; accepting that things will never be the same.

I’ve written about this before. An enforced life change/loss needs to be grieved before it can be accepted. I was very angry, upset and resentful after my breast cancer treatment but over time - a long time - I readjusted and got on with my new way of living.

But to go through it all a second time - a whole new loss, a whole new normal to be established - has been utterly crushing. I’m not angry this time, I’m just tired and broken.

So, it’s good that I’ve continued with my counselling. It’s been enormously cathartic, every few weeks, to just talk through recent and ongoing events and how I’m feeling about them. It’s helpful too to get my counsellor’s informed suggestions, like getting a referral to a Menopause Clinic at QC (which I now have for January) and access to online post-cancer health workshops for women.

This has been a bit of an eye-opener. The most recent was around ‘sex and intimacy’ and involved some very candid discussions. I’m not easily shocked but seeing a woman on ‘Zoom’ brandishing an array of sex toys and a glove-puppet ‘vagina’ was not what I was expecting on a Tuesday evening …

But it is good to talk and connect with sympathetic people who understand and ‘get it’. This doesn’t have to be exclusively about cancer, it can be about any other type of condition. I’ve spoken in depth with friends with auto-immune disease, who have had strokes … People that understand that life could be short and that sometimes you to have to accept and adapt to a new way of being.

Because, unfortunately, I did have an experience the other day with a person who, when told that I was having counselling (even though they know my health situation), looked at me in blank bemusement and asked “Counselling? Why…?!” It was disappointing and frustrating. I don’t need that.

What I also don’t need, as helpful as some people might find it, is creative suggestions to help exorcise any feelings regarding the loss of my reproductive system. So, while I’m a big fan of the
website, among the things I won’t be doing are:
  • Drawing a picture of my uterus (I have photo thanks, care of the pathology report)
  • Composing a song or poem about it
  • Writing it a thank you letter
  • Crocheting a uterus-shaped pillow

Trying to find another 'new' me ...

What I do need is my sense of self back. This was something that I spoke to the Macmillan Nurse about. My whole world, personally and professionally, feels in a state of uncertain limbo. I’m adrift.

The surgical plummet into menopause (plus ovary removal), as many reading will understand, has also not helped. Low oestrogen - while a very good thing for me in many ways - has been utterly debilitating in others. I find I can now burst into tears about literally anything.

So while I think I should now be considering a return to work, I question whether I am actually ready. I'm also torn regarding my next career move. I definitely need a change of pace and/or work culture but do I try and find a part-time role (in whatever sector) or a flexible full-time role for a worthwhile cause/organisation? Or should I go freelance? Aaargh. I just don’t know.

In the meantime, it’s been a joy to get back to watching and taking part in live theatre. As many reading this blog will know, the theatre (and the many friendships I have made through it) has been a big part of my life. So, it’s great to be back on stage with the Beaufort Players after a two-year break, doing what we love. (25th-27th November - tickets still available! 😁)

And then, of course, we have Christmas. Unlike last year (fingers crossed), in person catch-ups and celebrations can be had and my December diary is already filling up to help me see out what has been a very emotional year.

Few of us know what is around the corner in 2022 but I hope for all of you it remains healthy and cancer-free. Because as we all know: cancer can f*** off.

K x