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.

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.

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.

Second time, unlucky ...

I’m going for my CT scan today which I’m hoping will confirm that the womb cancer was localised. The results should come through in a day or two, together with the outstanding genetic and hormone tests.

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.

Second cancer

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.

Bad medicine

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.

K x

“Think positive …” and other gratuitous platitudes

There are some things that those fearing or facing a cancer diagnosis really don’t need to hear you say.

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?”

This can be taken a number of ways if the question is not specific. In terms of physical recovery, the answer can be factual: I’m sore, it hurts, I’m tired … etc. Emotionally though, it feels like cruelly poking an obvious bruise.

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”

Fuck off. 

Seriously, get your coat and do one. How insultingly dismissive of my (or anyone’s) situation and very legitimate concerns.

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.

K x

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