Thursday, 7 October 2021
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.
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.
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
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
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.
Thursday, 24 June 2021
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.
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.
Thursday, 10 June 2021
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
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.
Sunday, 9 May 2021
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.
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.
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.
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.