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.
Friday, 23 April 2021
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
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
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
Tuesday, 6 April 2021
I also hope it may allay some of my concerns about any potential recurrence of the breast cancer and the persistent pelvic/bladder pain I have had since well before the hysterectomy.
The cause of the womb cancer itself is still unclear. It might be Tamoxifen, it might be Lynch Syndrome, it might be shitty bad luck … but, like the breast cancer, it does seem that I have developed it younger than the norm. In fact, those that develop it are generally aged well over 50 and obese: neither of which I am.
Understandably then, I’ve been reading a lot about ‘second cancer’ this week. It came as quite a surprise to discover that one in six of all primary cancers diagnosed are in people who have already received a previous primary cancer diagnosis.
What makes some people susceptible in this way remains a mystery. Across an entire lifetime, I guess it would be feasible (if unlucky) to be hit by two separate lightening strikes. However, to have two primary cancer diagnoses at a relatively young age in just nine years, has given me considerable food for thought.
Do I have a genetic predisposition, as yet unidentified? Have lifestyle choices that I have made put me at increased risk? I just don’t know.
The thought that I could have done more to prevent this is a persistent one. Of course, I can’t undo what has passed but I have made proactive changes since New Year to significantly reduce my alcohol and caffeine intake and no longer eat meat.
I will also – when I know what it needs to be – follow my medication regime properly. I am yet to speak to the oncology team at The Royal Marsden, as any discussion needs to be based on the full histology findings, but I wouldn’t be surprised if I was asked to resume the Tamoxifen now that (ironically) the risk of womb cancer has gone.
As I’ve explained before, Tamoxifen is great at minimising oestrogen in breast tissue but does the perverse opposite in the uterus. It also has a confusing effect on bone density: causing loss of density in pre-menopausal women but helping build density in post-menopause. As drugs go, it’s pretty bloody contrary.
Consequently, my consultant wants me to have another bone density scan as soon as possible. In fact, I’d also like a full body MRI/CT scan for total peace of mind. While I’m already having a CT of my chest, abdomen and pelvis, the fact is breast cancer – when it reoccurs – does so commonly in the long bones of the arms and legs as well as the brain.
So, right now, I still have more questions than answers. While, on the face of it, my physical recovery seems to be going well, I am reluctant to commit to a return-to-work date until (i) all the outstanding diagnostic tests and medical recommendations have been made and (ii) I feel my mental and emotional recovery has advanced too.
We’re making progress but there is still some way to go.
Saturday, 3 April 2021
This might, on first view, read like an incredibly churlish post. Surely, you may surmise, people only say those things because they care? Mostly but not always. Sometimes it’s just to make themselves feel better.
“How are you feeling?”
In honesty, how do people think I’m ‘feeling’ about it? How would you feel about? It’s crap and it’s scary. I'm terrified of what might else might be lurking in other parts of my body ... and that it's going to kill me. But I'm pretty sure that's not the answer they want or are equipped to respond to!
People want a sanitised, glossed up version. They don’t really want to hear about the practical reality of the situation, either … like the fact that it’s prompted me to review my finances and update my will. Apparently, that makes me a massive fun-sponge and I’ve been told to “change the subject” because it’s “depressing”.
Which brings me to the next point …
“Think positive” and/or “it’ll be fine”
I'm definitely not a negative person but I am a staunchly realistic one. Because let’s be frank: never in two millennia of medicine has being positive or blithely optimistic actually cured anything without a surgical or chemical intervention. Well, has it?!
Despite the tone of this blog, I’m generally quite an upbeat person. But I also think it’s much more important to be pragmatic than positive.
So being told to ‘stay positive’ feels much more for your benefit than mine. Of course, I don’t want the worst to bloody happen and constantly hope for the best outcome, but I also need to be fully aware of the range of scenarios I might face and prepare for them (just in case).
Other insensitive generic comments along these lines include:
- “My friend’s aunt’s next-door-neighbour had an operation once and they were fine, so I’m sure you will be too.” Piss off.
- “Yeah, but you’ve got the all clear. You’re OK now.” No, and no. #FFS
So, what should you say?
I saw some friends yesterday and probably the most refreshing question I faced was “so, just how shit is it?” My answer: “really shit.”
So, if you really want to be a friend, please let us talk about it – but only if we say that we want to (don’t push it). And that includes the scary, upsetting stuff too.
Trust me, however uncomfortable you might find the discussion it won’t be nearly as uncomfortable (and distressing) as the person facing or having treatment is finding it.
We have legitimate concerns and fears and sometimes we need to be allowed to articulate them, to manage and make sense of them, without being made to feel that we’re selfishly dragging everybody else’s mood down.
So, there we are. That’s my Easter sermon delivered, a day early. 😉
I plan to spend the weekend pottering about and eating all the lovely chocolate and biscuits that people have sent me and then, when I'm allowed to resume ‘light exercise' next week, I can work them off again.
I’ve also got my CT scan booked in for Tuesday, back at King Edward VII in Marylebone, so fingers firmly crossed that those images and the other outstanding histology results raise no further concerns.
Wednesday, 31 March 2021
As you all know by now, I have visited a LOT of hospitals (NHS and private) but King Edward VII in Marylebone is definitely a cut above: it’s certainly the only one where a doorman in a top hat has greeted me like I was arriving at The Ritz.
It was clear to see why it’s the hospital of choice for the Royal Family. The staff are incredibly courteous and attentive and the food … my God, it’s like eating in a restaurant.
The operation itself (because sadly I hadn’t just visited on a mid-week City break) also went very well and the external scarring is amazingly minimal considering the extent of the surgery.
They just made tiny little cuts across my pelvis and in my navel and pulled everything out from below. I actually thought I’d be quite sore ‘downstairs’ but not in the slightest. I clearly have the most expert of surgeons. He must have whisked it all out through my lady-parts like a magician removing a table-cloth.
In the end, I only stayed in hospital the one night. I could’ve stayed two but I was making such good progress – standing up, walking OK (albeit very gingerly) – that I decided to come home. However, I did make sure I had my 3-course dinner first …
The real discomfort of the first few days was from (i) bruising and cuts to the abdominal muscle – a bit like I’d done too many sit ups – and (ii) the effect of the CO2 they pump in to inflate your abdomen during laparoscopic surgery and the anaesthetic/painkillers.
The CO2 irritates your diaphragm which then, weirdly, causes horrible shoulder pain. The more you move, the worse it gets and you just have to wait for it to leave your system – which can take a couple of days. The painkillers and anaesthetic also slow your digestion to a grinding halt, which is bloody uncomfortable as well as anti-social: I felt like a bruised and bloated balloon slowly deflating and leaking gas …
I was also bored. Really bored. I was uncomfortable, incredibly tired and couldn’t settle to anything – so reading or watching television was only in short bursts. I’d wake up early, potter about and then need a nap … like a small child or a pensioner.
Thankfully, that has now passed and I was looking forward to enjoying some alfresco catch-ups with friends in the garden under the gazebo. Except … I wasn’t the only victim of wind last weekend.
Sadly, the inclement weather saw the ‘Winey House’ break free of its moorings and take off like a big sail across the garden; its mangled frame, snapped.
Fortunately, help was at hand. My friend JR came round with a couple of assistants. JR might only be (almost) five but he was very quick to cast his critical eye over the situation and direct his father in the deployment of power tools.
I was very grateful for his expertise and for the cold instruction to purchase “better” garden games … although the Space Hopper that lives in the shed did meet with approval.
Which brings me to yesterday. I’d received a call on Monday from my consultant’s secretary to say that my biopsy results were in and that he had a cancellation if I’d like to come to the consulting rooms and see him in person. Obviously, I said yes.
Unfortunately, it wasn’t good news. But it wasn’t the worst news either.
The biopsy results confirmed that the atypical complex hyperplasia was not limited to the earlier polyp and was extensive inside my womb lining. In short, the diagnosis was Stage 1 endometrial cancer.
Fortunately, this early diagnosis – based on there being no indication that the cells had yet invaded other parts of the reproductive or lymphatic system – means that I don’t need to have any further immediate treatment, like radiotherapy. I’ve already had everything removed.
However, just to be on the safe side I will have a CT scan of my complete torso in a few weeks’ time and will be monitored closely with regular check-ups.
There are some other genetic and hormone test results pending too. There is an outside chance that I might have a rare genetic abnormality called Lynch Syndrome, which is evidenced in a strong familial tendency towards certain cancers - including womb cancer and bowel cancer (from which my Dad died).
It’s possible, I suppose. However, I suspect it’s more likely to be that bitch Oestrogen again. I’m finding her ominous presence quite wearing now: like a ninja assassin constantly lurking in the shadows.
Nonetheless, while I’m very upset to receive my second cancer diagnosis in nine years (and still under the age of 50), I still feel incredibly fortunate. Fortunate that I got referred quickly at new year and fortunate that I had the private medical cover in place to expedite surgery.
If I’d waited those extra two months to get surgery on the NHS (as I was no longer priority, as they didn’t think additional abnormalities would be found beyond the polyp), who knows what the outcome might have been? It’s a sobering thought.
Monday, 22 March 2021
It’s a been a busy and unsettling few weeks but I now have a much better understanding of what needs to happen and the impact it might have.
My thoughts and feelings on having a total hysterectomy continue to fluctuate. For the most part, I think I’m quite dispassionate … I don’t really know how to feel. In other moments, though – less frequent, thankfully – I do allow myself a little cry. All perfectly normal and understandable, I know.
The isolating nature of our current Covid situation has obviously not helped. There is a real lack of direct access to advice, materials etc. and so I’ve had to hunt it down for myself. The Royal College of Obstetricians and Gynaecologists have some useful resources, as do the Cancer Research and Macmillan websites.
However, by far the best site I’ve found is a US website and forum called ‘The Hyster Sisters’. It’s great. You register and put in your operation date and that puts you in a cohort of other ladies facing similar treatment and gives a ready support network. There are practical tips and videos too on how to prepare for the operation and what to expect post-surgery.
Forewarned is forearmed
Acting on the insights I have gained, I have:
- Cleaned the whole flat. That won’t happen again for quite some weeks … operation or no operation.
- Done a Tesco “big shop”. In particular, I’ve bought peppermint tea, chewing gum and dried figs … those painkillers can be ‘binding’.
- Stocked up the freezer with home-made meals.
- Moved everything I might need to access (clothes, toiletries, kitchen utensils etc) to within easy reach – i.e. no stretching or bending.
- Bought a step to help me get in and out the bath/shower.
- Bought a ‘litter-picker’ (extendable grabber) to pick up things I might drop and a long-handled dust-pan and brush. [Still not sure what I’m going to do about cat sick :-/ ]
- Prepared my ‘recovery spaces’ – i.e. my lounge and bedroom – with plenty of cushions and pillows.
- Made sure a few friends have keys to the flat, in case of emergency.
- Cut the grass. This clearly wasn’t essential but, if I hadn’t, by the time I’d managed to get out there again Chris Packham would have been out there with a pair of binoculars.
- Put up the ‘pop up’* gazebo. This definitely was essential. From 29 March, we (hopefully) will be able to meet groups of up to six people outside in the garden. We don’t want rain in our wine.
What happens next?
Obviously, a lot still needs to happen. Not least the operation itself but also some serious conversations about how my hormones should be managed to negate any future cancer-related issues.
So I’ve been in touch with The Royal Marsden’s breast cancer team and told them about my situation and given them the details of my gynaecology team at Queen Charlotte’s so that they can assess (based on upcoming histology/biopsy results) what drugs, if any, I should be on moving forward.
This might seem strange to people – especially those living outside a metropolitan area - that I’ve had to personally tell each respective hospital about my previous relevant treatment at the other. But the National Health Service, while a fantastic institution, is not actually ‘national’. In West London, for example, within just a few miles there are at least four different NHS Trusts – all with their own databases, patient records/numbers. It's certainly not joined up.
Nonetheless, I can’t fault the responsiveness and skill of the teams by which I’ve been treated. While I’ve opted to go private for this particular operation (to shorten my wait time), my surgeon is the same as for my polypectomy in February on the NHS.
What will be different will be the glamour of the surroundings. I’m going to be treated at King Edward VII Hospital in Marylebone, 'London's foremost private hospital' according to its website claim, which has only just said goodbye to Prince Phillip after his recent ill-health. So if it’s good enough for royalty then it’s good enough for me … and I’ve already been online to check out the sample room service menu!
I will keep you all informed on my progress and I continue to be truly overwhelmed by all your support. I've been incredibly touched by all the lovely messages (and gifts!) that I have received. Your good wishes really do mean a lot to me.
Thursday, 11 March 2021
Well, hello again. I’d rather hoped that I wouldn’t ever need to revisit this blog but it is the easiest way to keep everyone up-to-date. So apologies that this is a long post and apologies too to those hearing this news for the first time.
Firstly, let me be clear. I don’t have breast cancer again ... but my oestrogen has been trying very hard to ‘pursue other opportunities’. It has been a long and protracted journey but I’ll try to recap as succinctly as I can.
I won’t share the gore of my symptoms but late in 2017 I visited Queen Charlotte’s hospital and a large polyp was removed from my womb. It was a tense few weeks waiting for the biopsy results but thankfully it was benign. I was told that, while it could’ve happened anyway, it was most likely caused by the Tamoxifen that I had taken for five years following my diagnosis with invasive oestrogen responsive breast cancer.
Now the next bit is my stupid fault but also, I feel, partly the fault of the Royal Marsden for not having regular check-in touch points with ‘survivors’. Once your treatment ends, you do not have annual consultations to discuss progress or concerns, you are merely dispatched with a leaflet and an answerphone number.
Now, Tamoxifen does a good job of preventing breast cancer but it has other side effects. Yes, the worst of those is its potential to cause womb cancer but it affects your mood and physical responses in other ways. I was also frankly sick of taking it and being reminded every-single-bloody-day that my tit had tried to kill me. So I stopped taking it.
If I’d been having regular consultations with someone they would’ve told me that this was a stupid thing to do. However, I’d been left to my own devices. I couldn’t even tell you when I stopped. I think it was during 2019 ... I’d come back from India with what turned out to be dreadful whooping cough that lasted over six months and - combined with all that - I fell out the habit of taking it ...
** COMFORT BREAK: maybe get yourself a cup of tea ... there’s quite a bit more to explain. **
Roll forward to 2020, the year that we will all remember for all the wrong and terrible reasons. Locked down in our homes for months on end, days and weeks became as one and we lost all sense of time.
So when my symptoms started and for how long I’d had them before I finally contacted my GP in early December, I really couldn’t say.
[And, on the subject of contacting the GP, that deserves a separate little side rant of its own. Why - when you are forced to submit your ‘request’ via an online portal - does it only allow you to type and submit said request in core working hours? It’s not a ‘live chat’ function, it’s an email. The internet works 24 hours a day! FFS ... #shakesfist]
Anyway, fast forward a few weeks to New Years’ Eve. My symptoms by this point were horrendous. I’d been to my Mum’s for Christmas (support bubble, before I am judged!) and I’d been very unwell. I came back to London and found myself awaiting an internal scan at Ealing Hospital (ugh).
Previous readers of this blog will know that I am not a fan of Ealing Hospital. It’s where I was diagnosed with breast cancer. The staff seem very nice but it’s a depressing, under-resourced shithole and my visit on NYE offered nothing to reverse this opinion.
Upshot is they found another enormous lump in my womb. A whopper. I was urgently referred at frightening speed back to Queen Charlotte’s rapid diagnostic unit for more scans and in the space of just a week found myself undergoing surgery (8 Jan).
Well not quite ... they did try to remove it but I was bleeding so heavily internally (sorry, TMI?) that they couldn’t complete the procedure or all the biopsies.
So the saga continued for several more weeks. I FINALLY had the lump removed on 3 February and then I had the tense wait for biopsy results.
- The prognosis: complex atypical endometrial hyperplasia. The cells were not yet cancerous (thank god) but were definitely ‘on the turn’. In fact, my surgeon told me after the fact that the lump was so abnormal that he ‘definitely thought’ it was malignant, so was very pleased it wasn’t ... Me too, mate. Me too. :-/
- The treatment: total hysterectomy with bilateral salpingo oophorectomy. Basically that’s the full engine and all the connecting pipes: uterus, cervix, ovaries and Fallopian tubes. We can’t risk there being any more rogue delinquent cells in there.
Wow. Bet you weren’t expecting that, eh? I certainly wasn’t. :-(
What next?So, 2021 has clearly not been great for me. I’m now preparing for another major operation and trying to get my head around the wider implications of that surgery as well as the management of my hormone levels and the risk of potential breast cancer.
Oestrogen is clearly not my friend. In fact, she’s a spiteful little bitch. She’s already decimated one of my tits and clearly been wreaking havoc in my lady parts ... she needs to f*ck off.
So I’ll leave it there for now. I will post again about my operation which, having expedited it with my work health insurance, is scheduled for 23 March.
Finally, I know I appear to make light of these things (with ‘pragmatic resilience’ as one of my friends kindly observed) but these have been, and obviously continue to be, challenging and deeply upsetting times - especially when I can’t even get a hug!
So thank you to all of my lovely friends who continue to be so supportive: sending flowers, leaving cake on my doorstep and just listening to my concerns. While I still have some way to travel, I know I never take that journey alone.
Watch this space!