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.

Sunday 9 May 2021

“Dem bones, dem bones, dem ... dry bones”

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 … 

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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.

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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.

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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.

K x

Friday 23 April 2021

A few loose ends

Not much to report this week but I have had my CT scan results and spoken with an oncologist at The Royal Marsden.

I’ll start with the CT scan results. For the most part they were considered “unremarkable” which, while a bit insulting, is actually a good thing. However, a few things were highlighted: (i) a small internal split in one of my reconstructive breast implants (apparently nothing to worry about) (ii) some scarring and a slight collapse in my right lung (possibly due to previous chest infections) and (iii) my small bowel has prolapsed.

Putting the ‘pro’ in prolapse

As a slim woman that has never had children there are two words that have never really garnered too much of my attention: pelvic floor. Yes, that’s right, I’m going there. I’m going to talk about my ‘undercarriage’ …

Now that my troublesome uterus and ovaries have been evicted, my small bowel has cheekily extended into the space vacated. This is an inevitable effect of gravity but, while everything else appears secure and stable, I do want to prevent it getting any worse.

As with pretty much everything, diet and exercise appear to be the prescribed routes to success here - so I’m now a low alcohol, low caffeine, pescatarian and clenching for England. Should the IOC ever choose to recognise demonstrations of pelvic floor strength, I want to be in medal contention.

A tough pill to swallow

So my main outstanding issue is the breast cancer medication. I spoke to the ‘Marsden on the phone just now and any final recommendation/decision is dependent on the results of the DEXA bone scan that I’m not having until next week. I already have osteopenia in my spine and hips so my choice of drug will rather depend on how much or little that has worsened in the last three years.

However, I’ve been promised that my next appointment in two weeks’ time can be face-to-face so it will be nice to have a proper discussion and feel that I have a clear roadmap in advance of my return to work. The current plan is for me to go back on 10 May on a phased return: gradually building up my hours over the course of a few weeks.

In the meantime, I’m enjoying the sunshine and trying to get to grips with ‘real life’ again: getting out to see people and dipping a toe in on some work projects, just so I feel prepared. My summer social calendar is filling up too. It’s lovely to have things to look forward to again, so let’s hope that continues.

Saturday 17 April 2021

Here comes the sun ...

It’s been a largely positive week.

Annoyingly, I am still waiting on the CT scan results but I’m taking that to be a good sign, i.e. that there isn’t anything immediately concerning that needs follow-up or investigation. I will, however, continue to chase …

I did, though, get the full histology results. Good news: I don’t have any genetic defect that puts me (or any of my family) at higher risk of any other cancer – specifically, colon cancer.

The pathology also showed a high level of hormone responsiveness (quelle surprise) in the endometrial tissue – although less so in the tumour itself. This baffled me, somewhat. Fortunately, in my extended circle of very talented friends, I do know a lovely oncologist who was able to offer an explanation to this. It certainly helped to put my mind at ease.

On top of this, I had a good chat with one of the Breast Cancer nurses at The Royal Marsden. There is a very high likelihood that the Tamoxifen that I took to prevent the recurrence of breast cancer has contributed to the development of this second cancer (given its propensity to act like oestrogen in the uterus) and so I will be speaking to the ‘Marsden’s oncology team on Friday.

The main thrust of this discussion will be what, if any, breast cancer drugs I should now take. There seems to be three main choices: Tamoxifen (as no more risk of womb cancer!), Letrozole (which has a whole different set of potential issues) or nothing at all.

The plus side with Tamoxifen is that it will now build bone density strength rather than diminish it (like Letrozole), so a final decision will probably need to be made after my bone scan on 28th. Of course, I could opt to go without – although, with my risk averse nature, that’s unlikely.

Nonetheless, it would be fair to argue that my risk of another oestrogen-responsive cancer is now quite small. My ovaries are gone and while I believe the hypothalamus can create oestrogen, the levels are low and largely drawn from androgens converted from excess body fat – of which, thankfully, I don’t have a lot at present. [Apologies, if I’ve got this science bit wrong!]

So, progress is being made and I’m feeling much more upbeat about things. I think the relaxing of lockdown restrictions and the improvement in the weather has definitely helped too. Last night, the Winey House was open for garden visitors (Chinese takeaway and prosecco … nom nom) and I’m sitting outside now, watching the birds with a cup of tea, as I type this blog.

As Mr P (remember him?) said to me earlier: “The sun is coming out – literally and metaphorically.”

I couldn’t agree more.

Saturday 10 April 2021

Is no news, good news?

Frustratingly, I am still waiting on the complete histology report and CT scan results from King Edward VII hospital.

My consultant’s secretary has chased them up and I’m hopeful that I’ll get some answers next week. My GP has also arranged an appointment for a DEXA bone scan, 28 April, at St Mark’s Hospital in Harrow. No idea why I’ve got to travel so far for that - bit annoying - but it does allow me to add another hospital to the massive list I have already visited. If there was a ‘frequent flyer’ programme for NHS patients, I would certainly be a gold card holder.

In terms of recovery, I’m physically doing really well. My external wounds are really negligible; I’ve actually got worse scars from having moles removed. I can also do much more now like drive, go for longer walks and can lift small things.

However, I am EXHAUSTED. Absolutely shattered, all of the time. This will be a whole host of factors I know: internal healing, sudden hormone drop, psychological trauma ... etc.

Because, understandably, it has been quite the emotional wallop. I do sometimes find it catching up with me in an unguarded moment and having a little, but thankfully brief, cry. I also - much as I do love a bit of SU4C Bake Off - have to fast forward or leave the room whenever the ‘personal cancer stories’ come on. It all feels a bit too raw.

“Friendship is the only cement that will ever hold the world together.” – Woodrow Wilson


Thankfully, as I will never tire of saying, I do have truly fabulous friends who check in on me constantly, let me chunter on about my various issues and provide practical support and help.

It was such a tonic to catch up with the lovely Fi on Tuesday after my CT scan in Marylebone and then to come home and have little JR and his family round for tea in the garden.

As instructed, I had purchased ‘better’ garden games and some apple juice (as mango was not to his liking). We also ‘popped up’ a brand new gazebo. So, like a Phoenix risen from the ashes, a reincarnation of the ‘Winey House’ is now awaiting garden visitors/drinkers.

More good news came this week when my GP - on my second time of asking - finally conceded that a primary cancer diagnosis might make me eligible for a Covid vaccine. [It did seem ridiculous to me that I had to push the point on this when, if I was an overweight smoker I’d have already been offered one ... but I digress!]

So, I’ve had my first jab. AstraZeneca, if it’s relevant or anyone’s interested. I did feel bloody rotten for a bit - weirdly reminiscent of chemotherapy, actually. In particular, I woke up in the night with a headache, feeling sick and with dreadful stabbing pains in all my bones (like with Docetaxol - ugh!) - so I had to get up for my go-to chemo relief: paracetamol, sugary tea and toast with ginger jam.

It seemed to do the trick as when I woke up in the morning, the nausea and bone pain had gone and I just had a residual headache for a few more hours. My arm still really hurts though ... is that normal? My injection was Wednesday morning (more than 72 hours ago) and it still feels really heavy and sore.

Thankfully, I do still have a lorry load of Easter chocolate to eat my way through as a distraction. Someone had helpfully suggested that I ‘must have’ lost weight due to the hysterectomy but sadly, with the average uterus weighing less than 60g/3oz, I won’t be needing a new wardrobe just yet!

Just to put this in perspective, and because I obviously have too much time on my hands, here are some other things that Google tells me weigh c. 60g:
  • 1 x chicken egg
  • 1 x tennis ball
  • 1 x small kiwi fruit
  • 1 x scorpion
  • 1 x newborn raccoon
  • 1 x blueberry muffin
  • 3 x mice
  • 19 x teabags
Clearly I’ve no idea who has spent their time weighing scorpions or teabags but it’s a valuable point of reference. I thank you for your efforts.