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
HysterSisters
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

 

 

Thursday 7 October 2021

Cancer: have you heard of it?

October brings us the double-whammy: Breast Cancer Awareness and Menopause Awareness Month. I have mixed feelings.

With my ‘PR girl’ hat on, I know these “awareness” months are important and useful in cutting through the general background noise and focussing a concentrated burst of publicity on a particular issue. However, there are so many of them now … every day/week/month dedicated to a particular cause, disease or foodstuff, (British Pie Week?), that I do think they have somewhat lost their impact.

That aside, I am very focussed on cancer and the menopause this month for my own personal reasons.

Menopausal moans

Can I just say to anyone reading this that will not go through menopause or has not yet experienced it – the menopause can be pretty shit.

That said, considering I’m not able to avail myself of any hormone therapy, some of my symptoms aren’t too bad. My hot flushes are manageable now that I don’t drink that much caffeine and I keep an electric fan in most rooms, as well as a hand-held-fan in my handbag for when I’m out and about.

However, as I’ve highlighted on this blog before, oestrogen does more than play a role in menstruation. It’s vital for bone health and maintaining normal insulin and cholesterol levels, as well as cognitive function. It’s the reason why so many women start to get forgetful and confused as they get older.

And this is scary. I often can’t remember things I’ve done from day-to-day and find I now start most stories I tell with “sorry, if I’ve told you this before …”

The other key role of oestrogen is to act as nature’s WD-40; the lubricant that keeps joints supple and mobile and moisture where you need and want it. (You all know what I’m getting at …) This elasticity in organ tissue also includes the bladder, which without oestrogen can lead to weakness and/or interstitial cystitis.

So the menopause can shake up your life, not just physically but mentally and emotionally. Your sense of self changes and you realise that things that you used to take for granted may no longer be possible for you. You have to accept and adapt to a new way of being … but that can be very hard.

Cancer counselling

I’ve certainly struggled with the changes I’ve experienced over the last (almost) 10 years; because let’s be honest, there’s been a lot! Of course, I accept where I am and what has happened but there’s no denying it’s been crap.

Fortunately, I have finally (after a four-month waiting list) been allocated a counsellor via The Royal Marsden. I’m not sure what I hope to get out of it, really, but just to have someone to talk to/at about what I’ve been through and how it’s made me truly feel, is a very good thing.

I’m also back under NHS care, at Queen Charlotte’s Hospital, for my uterine oncology. I went to see my surgeon this week for what will be regular (3-4 month) check-ups. Everything looked fine at the surgical site – no more granulation, thank God – and so I just need to get used to the general low level of discomfort that I feel in the pelvic area (as I have done in my mastectomy site).

I’m not due to see my breast cancer oncology team until early November when we will discuss what medication, if any, I should be on. The more time that has elapsed, the more fixed I have become that I do not want to go on any new drugs (Letrozole) but I am open-minded to hear what they have to say.

So that’s where I’m at.

In other news: I’m still not working … and bloody loving it. However, my productivity levels have slipped to an all time low. Now that the Autumn TV schedules have started, my TIVO box has never seen so much action and keeping up with MAFS UK, MAFS Australia and all ‘The Real Housewives’ really is proving a full-time job!

Wednesday 8 September 2021

That 'back to school' feeling ...

I know I’ve not posted for a while, but I wanted to share a few words in what has proved an unsettling week.

First and foremost, as my electronic calendar reminded me, this week should’ve been my nine years NED. (That’s ‘no evidence of disease’ for the uninitiated).

I can’t really articulate how I feel about this, other than feeling like I’d almost won a protracted game of ‘Snakes and Ladders’ only to find myself sliding all the way back down to the start of the board …

Of course, the truth is I am still nine years ‘NED’ in terms of breast cancer but in an overall sense the counter has been reset: five months and counting …

This general sense of ill ease has also been heightened by the sad news this week of the passing of the singer, Sarah Harding, from advanced stage breast cancer aged 39.

Each year in the UK, just under 55,000 people are diagnosed with breast cancer and 13% of those are aged under 45. On average just under 1 in 3 (30%) will receive a secondary diagnosis at some point.

So, as tragic as her story is, I’m glad that it’s put the issue of cancer in younger women back in the spotlight - even if, for those of us that have had a cancer diagnosis (of any type), the detailed coverage can leave us feeling quite raw.

I’ve also been struggling quite a bit from the long-term impacts of my recent surgeries. The sudden and immediate drop in oestrogen has played havoc with my joints and I’ve been left feeling like a little old lady. I also had a brief relapse in terms of my abdominal muscle strength. I hadn’t really appreciated how careful I now need to be and that I must live with these additional limitations. That’s been upsetting and hard.

Lastly, while it was an active choice on my part - and one I’m very glad I made - today I have finally entered the ranks of the unemployed.

For someone who has worked continuously for 25+ years, this is new territory for me. I’m grateful to have this time to get my life together but find I’m already fretting about what the future might hold and my preparedness for change.

All of which is pointless, I know. It doesn’t matter how much we plan, there could always be unexpected changes - good or bad - just around the corner.

So that’s been my, largely introspective, week. I have been trying to distract myself by getting out into the sunshine and have a very sociable weekend planned.

For the first time since before the pandemic, I have someone coming to stay. I can’t wait … but I’m not sure Phoebe-the-cat will be quite as thrilled to give up her room for a few days. She’s become quite the gobby-little-miss in the 18 months she’s had me to herself at home!

It’s been quite cathartic though, packing up the home office and clearing the decks. And the metaphor is not wasted on me: we all need to step away from the old to make room for the new.

I do hope that this break of routine will help me to start to think and live differently. This could be the first day of a new me.

Friday 9 July 2021

A lady of leisure(wear) …

Well, my worst fears having been realised: giving up work has resulted in an embarrassing and acute case of laziness! 

In my defence, the first week I told myself I was just ‘winding down’. The second week I spent in Scotland with friends; celebrating my birthday, watching the football but also largely sitting around drinking wine and eating cream cakes. 

The third week, this week, I have been forced to recognise my innate (and well practised) ability to waste entire days in my dressing gown and achieve absolutely naff all.

Well, that’s not strictly true. I have been to the hospital this week for my post-hysterectomy check-up. It was the first time I’d seen my surgeon since late March and he gave me the womb cancer diagnosis. He just wanted to check that everything has healed properly inside (it mostly has) and to see how I was doing. 

It was all very positive. The only issue the scan identified was some tissue granulation at the seam/scar where my cervix used to be. This isn’t common but it’s not unusual either. It sometimes happens on internal wounds as they aren’t dry and scar tissue starts to form over an unhealed area and prevents/slows true healing.

The treatment is either to cut it out or, more commonly, to cauterise it with silver nitrate. So I said ‘fine, yes, stick some silver nitrate on it …’

Yeesh. What was I thinking?! The procedure itself was fine but, of course, scars are not normal tissue in terms of their sensitivity. When it was over and drops of silver nitrate made contact with the surrounding flesh, it felt like someone had scorched the inside of my lady-parts with a match … The walk back to the Tube station was a very, very slow one.

Anyway, hopefully that’s done the trick. If it hasn’t and he wants to do it again in four months, I’ll tell him to just cut it off. While it’ll be even more painful, I’d rather have a permanent fix.

That also wasn’t the biggest drama of this week: Phoebe-the-cat has been ill. For such a sociable affectionate cat to stop eating and start hiding all the time was really very upsetting. She became completely listless and I was genuinely concerned that her body was shutting down. She’s about 10 years old.

But no, turns out it was a virus and she’d had a breakout of cat acne and herpes! Who knew that was even a thing? I certainly didn’t. Poor little thing … but all sorted now: painkillers with a puréed pouch and my little mate has bounced right back. 

So, with a clean bill of health for us both, here’s hoping the second half of 2021 will be much better than the first. And, of course, this weekend we also have the much anticipated Euro 2020 final. Is football finally ‘coming home’? I certainly hope so.

I’ll be keeping everything crossed for the England team on Sunday and - whatever the result - look hopefully forward to the much touted heatwave they reckon will be with us in time for 19 July and a return to ‘normality’, however that may ultimately manifest.

Game on!

Thursday 24 June 2021

Oestrogen: can’t live with her, can’t live without her

Oestrogen really is my nemesis. Left to run free she promotes cancerous cells in my body; show her the door and my body ceases to function properly. It’s one relentlessly exhausting and dysfunctional relationship.

For the last four months, I’ve had increasingly bad pain in my left shoulder. I first noticed it after my polyp removal op in February and thought maybe they’d had me in an awkward position. Over subsequent months it got worse and worse and I finally went to see a physiotherapist at the beginning of May.

Initially, the physio thought it might be residual effects of whiplash I’d received in October 2020, when I slipped on some wet leaves and banged my head. Eight sessions in, though, and that doesn’t seem to be the case - at least not entirely. Certainly, the treatment has relieved the tension in my neck - as has giving up work! – but the pain of moving my shoulder shows no sign of abating.

Basically, it now seems I have ‘menopausal adhesive capsulitis’ or ‘frozen shoulder.’ Bastards.

Turns out that little fecker, Oestrogen, is the WD-40 of the body. Without it, some women find their soft connective tissues go brittle and hard. In fact, Oestrogen impacts every aspect of joint health including the bones, muscles, cartilage and ligaments.  

This capsulitis is so common in peri-menopausal and menopausal women that the Japanese even have a colloquial name for it: "goju kata" (50-year-old shoulder). Gee, thanks for that.

Frankly, it’s a bloody nightmare. One of the treatments is hormone therapy, which I clearly can’t have, so we’re going to see about getting a cortisone injection directly into the soft tissue to reduce the inflammation.

It really is excruciatingly painful and incredibly limiting in terms of what I can physically do. I am finding it pretty upsetting. Hopefully the symptoms can be eradicated or, at least minimised, or I will soon need to change my car to an automatic. Getting my manual car into reverse gear can sometimes bring tears to my eyes …

Sorry, not sorry!

One thing I’m definitely NOT crying about, though, is jacking in work! Despite my physical maladies, mentally and emotionally I feel my life has entered a new and more liberated phase.

Last week I went into the City for the first time in over six months, had a farewell lunch with my lovely team, and handed back my phone and laptop. It was incredibly bittersweet being back in the office and temporarily feeling ‘part of something’ again but stepping away for the sake of my mental and physical health is absolutely the right thing to do.

Because my energy levels are still far from being at the levels that they were before Christmas. A lot has happened in just a few months, not least three operations and a crash into surgical menopause. Even without the cancer bit, I think most people would be a bit tired!

So, while I am trying to plan and give structure to what could otherwise become quite empty and unproductive days, I’m also giving myself some latitude to just rest up. The fatigue can be very unpredictable. Just a short walk down to the supermarket and back can require a recuperative catnap.

Nonetheless, (now I am fully vaccinated), I do have some activities and UK-based trips planned: Glasgow, Jersey, Devon … with several more pending. So, if you’re free for lunch, dinner or drinks, in the coming weeks or months, do let me know. The occasional walk may also be agreeable but I do insist on regular tea/scone breaks … for medical reasons, obviously.

I’m also really enjoying (if that’s the right word) the hour I have once a fortnight talking to other ladies through the Maggie’s Centre about their experience of cancer. They really are such an amazing bunch. I am constantly surprised, moved and impressed but the candour, humour and intelligence with which they speak. We laugh, we cry … it’s an incredibly humbling experience at times.

And it also makes me remember just how incredibly blessed and lucky I am. Some of these young women have terminal diagnoses, unsympathetic employers and/or acute financial worries. I have none of that. I face challenges but I really have no complaints.

So, I continue to look forward: to the summer and to the future.

Kate x

Thursday 10 June 2021

A fresh new chapter in a whole new book

Well, it’s finally public and official ... I’m giving up work (at least for a bit).

I’m one of those annoying and incredibly fortunate people who has never been unemployed. I went straight to a job from university and have continued to transition from one role directly to another.

Apart from extended medical absences due to major surgery and cancer treatment (2012 and this year), I have worked continuously for 26 years. And to what end? To become very comfortably cash rich, yet incredibly time poor. To have money in the bank ... that I end up spending on getting other people to do the jobs that I never have the time or energy to do!

So, I’m not just pressing the brake ... I’m turning the engine completely off. I want to enjoy the silence and really take the time to take in and absorb where I am, and how I got there, before I decide where to go next.

That all sounds quite profound, doesn’t it? In reality, we all know that any contemplation of the universe will also be interspersed with quite a lot of mundane ‘life laundry’ that will finally get attention and probably even more television watching. I suspect I will soon know the ITV3 daytime schedule off by heart ...

Nonetheless, I feel like a massive weight has lifted from my shoulders. No more keeping on, keeping on ...

Given my incredibly risk averse nature, some people might think this is a brave/reckless move. It’s really not. Without wanting to sound crass, while I am jumping into the unknown, my years of financial prudence mean I am doing it with a fairly secure financial safety net - so Phoebe-the-cat won’t be chowing down on budget kibble just yet.

If the last few years (indeed months) have taught me anything it’s that none of us know what’s coming round the corner or how long we might be here. And I, for one, still have a lot of living to do ... and a loft to tidy(!) ... so I need to stop faffing around and reassess my priorities.

As one door closes, I’m confident several more will start to swing open ...

Tuesday 1 June 2021

Crossroads ...

Hello. I'm back. I know I’ve not posted for a few weeks but there have been big decisions to make and a lot of life to try and get moving again.

I know the word ‘crossroads’ will probably evoke very different things for people depending on how old they are. For some it might be dodgy motel-based soap operas, while for others it might be Blazin’ Squad or Britney Spears.

Anyway, to cut a long story short, I’ve reached what I think is a turning point in my life. As you already know, 9.5 years ago - at the age of 38 - I was diagnosed with Grade 2 breast cancer. Now, at 47 (teetering on the verge of 48), I was diagnosed with Grade 1 endometrial cancer too. Having cancer once under 50 is a definitely a bit shit but having it twice is really taking the piss.

Thankfully, I seem to have bounced back … again. Nonetheless, if I didn’t take this watershed to really question how I’ve been living my life and what I might want from it in the future, then I think a lot of people would be surprised.

This was brought home to me quite starkly when I returned to work. For the most part, I’ve felt very supported but there was also an abrupt dose of realism when someone candidly asked me in my first week: “why did you come back?” It was totally without malice and a very good question. Why had I decided to come back?

The fact is I have always been a creature of obligation and habit. I’m not a rule breaker. A bit cheeky, perhaps, but definitely not a rebel of any note. I hate to let anybody down and to think that I might not be able to meet the expectations of others, or more importantly of myself, is something that really does not sit well.

So, I’ve been given a lot of food for thought. I went back to work because I thought it was expected of me but I need to be realistic. I need to give myself time to heal: physically, mentally and emotionally. I’m still less than 10 weeks out of (yet another) major surgery and find I get very tired when sitting at a desk and in virtual meetings all day.

I’ve also started to question my personal motivations: my ikigai, or reason for being. The ideal, of course, as people tell me is to get paid to do something that you really love. I don’t disagree … but the chances of someone paying me to watch Poirot and eat biscuits are disappointingly slim.

It’s all a question of balance. And now is the time to try and get some.

Mindful of this fact, I’ve been taking advantage of some of the support options that are available. The most immediately accessible is my local Maggie’s Centre at Charing Cross Hospital in Hammersmith. Maggie’s is a wonderful charity that provides free support to those affected by cancer at centres across the UK. I used their facilities back in 2012 and to go back and talk to one of their advisers was really helpful.

In particular, I signed up to a short programme of workshops for ‘younger women’ with cancer. I was pleasantly surprised to hear that I was still eligible to be included but, in truth, I am the oldest woman on the call by far.

Nonetheless, it has helped me validate some of my feelings and also helped me to realise just how very far I’ve come. Some of the ladies are still very much in the thick of it: angry at their bodies for going wrong and wondering whether they will ever be able to step out, post treatment, from the cancer cloud and regain a sense of normality.

And, fingers crossed, they will. As I said to them, in the vast majority of cases, developing cancer is just shitty bad luck. That’s the tough reality. But over time – as I and many others have – they will reach a place of acceptance. ‘Real life’ will resume … it might just be a little bit different to the one they had before.

It’s advice I need to follow as well. Sometimes changes are forced upon us but we can choose to make them too. So that’s where I’m at … stood at a major life junction and trying to decide which way to go next. It’s exciting. I think.