That was the week that was ...

It’s been an eventful seven days, so let’s start at the beginning.

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.

See you later, ovulater ...

Tomorrow I’ll say goodbye to my entire reproductive system.

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.

*The term ‘pop-up’ is clearly misleading. It did not ‘pop up’. It took a lot of WD-40, swearing and kicking. And now it is up, with the sides on – like a big white Wendy House – it looks like a crime scene tent from Silent Witness.

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.

Kate x

Cancer Wars: Episode 2021 - The Oestrogen Strikes Back

After nine years of relative good health and prosperity, there has been an ominous disturbance in the life-force ...

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!

Kate xx