[CANCER] Appointment: Oophorectomy

So, yesterday, I had an appointment with the Gynae team at Stepping Hill, to talk about possibilities of an oophorectomy (ovary removal). I’d been told by the appointment booker that I was first on the list, and should be done by 2pm (I had meetings booked at work), so…

 

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It’s #waitingroomfeet again … consultant re oompherectomy

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… obviously I went in about 2pm. The letter from my oncologist was on the screen (I was supposed to getting all letters by default, but have slightly given up on the effort), basically saying that I have Stage IV cancer, and am on zoladex/exemastane to control hormones (as my cancer is 8/8 fueled by oestrogen), and wants to do a preventative oophorectomy (I keep calling it an oomphorectory and people keep asking me why I want to lose my oomph!) – reduces oestrogen flow, ensures I remain permanently in menopause, and means won’t need the massive zoladex injections every 28 days (hurrah, one less hospital appointment, as I’ll be in every 3 weeks for IV, every 3-6 months for scans, plus other consult chats, etc.)…

I was asked various questions about cancer, gynae history, etc by the Dr, one of the consultants, and he then went off to check with the lead surgeon (after he’d checked my BMI, sigh). The surgeon then came in and said that robotic surgery was safer option for women who are overweight, and given this leaflet to read:

 

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Leaflets leaflets #cancer

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I was slightly thrown by him then saying ‘just don’t eat carbs for a couple of months’ and we’ll see you in September to arrange surgery for October/November, and talk to the anesthetist. We did manage to establish that the surgery is still doable, but he’s keen for me to lose 9 points on the BMI scale. As I may have mentioned before, I have disordered eating, and have worked hard to get my mental health more balanced around food, and now eat food I enjoy, has good nutritional value, and when I’m not in chemo, am very active and fit … so quite frustrated. Because clearly, we have been surrounded by ‘the diet industry’ for 50+ years now, and all that seems to have happened is we then have an ‘obesity epidemic’ (contested term) … and a lot of bad things of being overweight – some research is demonstrating that this is down to diet-cycling (losing-gaining-losing-gaining, etc.). Not my specialist research area but ….

However, been talking to my Beyond Chocolate buddies, and can experiment with some new meals, including more protein and even more veg (already trying to eat the rainbow to give self vitamins, etc.) and ‘be curious’ without going on some crazy diet (last experience of Slimming World – lost about 3.5 stone, was already gaining back whilst going, and probably regained about 7) … don’t want to undo the good work already have, nor do I want gall stones from swift unhealthy weight loss, etc.. Starting to feel like a gym class may be possible tomorrow … long way from the total blackness of last week.

Anyway, I then went into town, had my PDR (all good), and onto a meal with teammates (SO nice after spending so much time at home):

Anyway, today I need to get on with some writing, so need to go quiet now, right!

[MEDIA] Talking about @Barnardos report with @PremierRadio and @HeartNorthWest

Barnardo’s released a new report focusing upon screentime, addiction, mental health, online grooming, and cyberbullying …

I was asked to respond to this on Premier’s News Hour

and shortly afterwards for Heart Radio (not sure which show it went out on):

It’s always interesting to see which elements are used, from a 15 minute chat.

Notes In Preparation: 

[CANCER] Surviving (hopefully) the last Docetaxol #BreastCancer #BusyLivingWithMets

Last time I blogged about cancer, I had been discharged from radiotherapy at the Christie (where I’d had stereotactic radiotherapy). That means in around 4 weeks time I should be due a scan (no appointment arrived yet) to check and see how successful the combined radiotherapy and heavyweight docetaxol has been – there is expected to be ‘scar tissue’ on the bone, but the hope is that there is nothing else visible on my spine, or anywhere else. I will always be Stage 4 cancer, and never be cancer free, but the hope is for shrinkage (or stability), and best case scenario – NEAD (no evidence of active disease).

Chemotherapy

Thankfully, when I saw my oncologist, we decided that I only needed ONE MORE docetaxol, as it’s the Herceptin and Perjeta I really need (and when I realised the woman next to me in the chemo ward had stopped at one, sometimes I wonder – but it is a powerful drug – so I will follow the recommendations I am given!

My mum managed to come with me to this (final, please, final) docetaxol chemo (although we agreed that she would disappear the day afterwards as just want own head space whilst struggling way through the side effects):

and also, this is the last time (for now at least) that I need to wear the cold cap – as before, it’s worked really well (I think it’s all about the fit), so Nicky gave permission for these v flattering photos of her trying to wedge it on:

Also had Poppy and Turkey to one hand … whilst that table in front of me was kept supplied with hot ribena, Costa coffee snacks, and hot chocolate … as well as my iPad (clearing out last few emails before turning it off):

Managing Docetaxol

Before my mum disappeared, we had to zoom back into the hospital as I was 7 steroid tablets short … these are designed to manage some of the side effects, though leave one a little ‘manic’ – and they had decided to peter out my steroids over 3 extra days to give the rash/acne a chance to not appear, and also try and manage the nosebleeds:

  • Aside from the night before chemo when I got NO sleep at all, the Zopiclone has been sending me off to sleep (honestly, I’ll sleep through as much of this as possible) … but I don’t think the GP will keep chucking that at me, and hopefully once get back to more active ‘fitness’ rather than my Pokewalks, should be tired enough to sleep.
  • The nosebleeds tried to start as expected as the steroids wore off, but with use of the Nasceptin cream, soon retreated, which is bliss!
  • Indigestion kicked in early … I found some omeprazole from last time, which remember to take before food – has helped… otherwise glugging back the aniseed Gaviscon!
  • Metallic taste in mouth – liquorice toffee seems to cut through this!
  • Body aches and pains from where the filgrastim (hurrah, last of those yesterday) is regenerating white blood cells, and having said to the radiotherapy oncologist I’ve had very little pain in my back … it’s quite noticeable over last 5-6 days…
  • The acne started to flare up again properly a couple of days ago, so I’m keeping at it with the antihistamines, germolene, pliazon *I read in When Breath Becomes Air this is a common side effect of chemo ‘and a sign that it’s working’ (hmmm).
  • I have thankfully retained some concentration – enough to read a few books, which is nice. Quite a bit more impatient with stuff that’s ‘not good’ though…. Third jigsaw is part done, not sure when I’ll be back to that, but second one was here:

  • I have found it much harder to bounce back energy wise, and the last 2-3 days have been exceedingly black – full of thoughts about why am I bothering to try and do anything, how am I ever going to manage work, got nothing to contribute to the world, it’s going to come back elsewhere, etc. Not untypical reaction to such a harsh drug, but terrifying to be in the middle of. I’ve been proudly saying since my diagnosis in August 2017, I’ve only missed heading out for a walk 3 times … make that 5 now (aside from anything else, stomach is quite unpredictable). Still ticking away a bit there tonight…
  • Despite the fatigue, undertook to mow the (small) lawn and (lying down) weed the beds, but that about wiped me out for yesterday, and today, I popped out to a couple of shops, then ended up rather dizzy in Asda 🙁
  • Still minor feeling of peripheral neuropathy, but nowhere near as bad as last time, so hoping that will fade away again…
  • Eyelashes and eyebrows still holding on (for now) though eyes super-watery…

Tomorrow I am back ‘working from home’ – had a bit of excitement today pre-ordering stuff for bathroom to be redone in August. House is slowly slowly getting there – including getting personalised with some pics. Just want it all done so can curl up with a book, or go out for a hike (walk/swim/cycle) and not think ‘I should be doing x’.

What Next?

  • On 11th June (sod’s law, day had booked things in work, will get there – but late) I’ll have an appointment with Gynaecology to discuss an oophorectomy (ovary removal) – as this is the main source of oestrogen production, and my tumour is fed 8/8 by oestrogen.
  • On 17th June I’ll have Herceptin and Perjeta (targeted therapies – or are they chemotherapies… anyway, they are not immunotherapies – I know that much) – which will take about 1.5 hours in the chemo suite. There’s expected to be limited side effects (fatigue, thinning hair, etc) unlike the docetaxol. I’ll have this every 3 weeks for as long as it keeps working (so we pray a long time), adding in denosomub bone strengthener every 6 weeks (injection). So I expect to take my work iPad to these appointments and just hope rest of life gradually fits round!
  • On 17th June I’ll also be seeing my oncologist again, presumably to sort the next scans, feedback on the gynae appointment, and any other bits and bobs.
  • On 18th June I’ll be back in the GP, back onto the Zoladex injections (hormonal suppression) – and I guess exemestane – which I had to suspend for chemo. I’ll be on this every 28 days until oophorectomy has been done (which am assuming is around Sept-Nov time).

So ‘for the rest of my life’ (however long that is, team is optimistic, but it’s a challenge to live with) I’ll be having hospital appointments minimum of every 3 weeks, and trying to fit everything else around that. Talking to oncologist and nurses about possible travelling, they said it’s possible for 2 of the drugs to be taken (chilled) as injections, and the Perjeta could miss the exceptional appointment. They are very keen on quality of life!!

#EmptyShelf19: May

This month I read:

Beyond Words: Illness and the Limits of ExpressionBeyond Words: Illness and the Limits of Expression by Kathlyn Conway
My rating: 4 of 5 stars

I’m looking at interrogating my own writing about my experiences of cancer, and there was a lot of interesting material in this book. I read more deeply the first half, reading somewhat faster the second half. Conway covers a huge number of writers who are writing about various/chronic illnesses (including cancer) and the struggles that it takes to describe something that is rather indescribable – and the way that eg cancer has moved from being something shameful/hidden, to something that now requires a triumphal ending and a finding of meaning in the experience…. whereas it’s not always that straightforward.

You Have the Right to Remain Fat: A ManifestoYou Have the Right to Remain Fat: A Manifesto by Virgie Tovar
My rating: 4 of 5 stars

I was in two minds about how to review this book – in one way its rather like a long blog post rather than a book, so not a huge amount of nuance – However – a lot has been packed into a small space and a lot of now familiar arguments about the balance between mental/physical health, the obsession with ‘obesity’ (when this seems to be tied as a problem to many of the ‘solutions’ aka diets). Very easy to read.

Invisible Women: Exposing data bias in a world designed for menInvisible Women: Exposing data bias in a world designed for men by Caroline Criado Pérez
My rating: 5 of 5 stars

There’s plenty to chew on in this book – yes a lot of the material is drawn from newspaper articles but there’s a significant sprinkling of academic paperwork in there too – and it’s designed as a conversational starting point rather than an academic treatise – it does raise a lot of questions about how everything is built around ‘the default man’ and how many ways women (and men) lose out because of this … and there’s a rant around pockets too. The assumption that something is ‘normal’ is highlighted well – things that seem ‘objective’ are built on years of normalising something that doesn’t seem to be so. Very readable.

Happy Fat: Taking Up Space in a World That Wants to Shrink YouHappy Fat: Taking Up Space in a World That Wants to Shrink You by Sofie Hagen
My rating: 4 of 5 stars

A pretty straightforward enjoyable read – and particularly interesting in an age of ‘body positivity’ re reclaiming ‘the fat movement’ which originally started in the 1960s. Some gentle comedy, some much grittier stuff, and lots of the really helpful stuff about how health is more than physical – the mental health side of weight-focus and how much damage it can do … well worth a read.

Hidden Figures: The Untold Story of the African American Women Who Helped Win the Space RaceHidden Figures: The Untold Story of the African American Women Who Helped Win the Space Race by Margot Lee Shetterly
My rating: 4 of 5 stars

I found this quite a hard book to read, though I did end up re-reading it in one sitting a couple of weeks after the film (where there’s not that much obvious overlap to be honest). Bits of the book were quite dry/technical – but there were flashes where the story came to life and we got to see the women involved and understand the contribution that made to both the American space race and the desegregation of the USA (albeit that it’s never gone away).

Everywoman: One Woman’s Truth About Speaking the TruthEverywoman: One Woman’s Truth About Speaking the Truth by Jess Phillips
My rating: 5 of 5 stars

I really enjoyed this book – reading it in an evening …. I’ve seen a few of Jess’s bits of content online (TBH was disappointed re comment want to stay size 10 & eat cake – but the book points out just how much that comes from the culture we’re entrenched in – and there’s a lot more speaking out against it. I’ve got (female) friends who are in the frame as potential MPs, and some who are not sure how much they want to take the crap that comes of being a woman with a strong voice … I liked the honesty and humanity of Jess.

The F*ck It Diet: Stop Dieting and Start Taking Up SpaceThe F*ck It Diet: Stop Dieting and Start Taking Up Space by Caroline Dooner
My rating: 5 of 5 stars

I first came across the idea of the anti diet movement 10 years ago, and reading this book is a good reminder of how far I’ve come since first reading Beyond Chocolate…. which this sits v well alongside of. Big reminders here that seeking to lose weight long term in the way that diet culture wants you to constantly demonstrates that this fails – this is more about self care/compassion and learning to ‘let go’ of all the expectations we (particularly as women) have on ourselves and our behaviours/looks. Particularly liked the emphasis on rest and the dangers of constantly being in a high stress state (often leads to emotional eating aside from anything else)… and the reminder that one can expect to feel hungry because human beings eat.

When Bad Things Happen to Good PeopleWhen Bad Things Happen to Good People by Harold S. Kushner
My rating: 5 of 5 stars

Plenty to think about

As someone with incurable cancer – the question why can arise a lot (although why not just as much). The notion of a big God pointing out people on who to heap suffering is not a comfortable one, and the rabbi gives helpful insights into the notion of suffering on earth and an emphasis on how much we are made for community with each other and can help each other out in the difficult times.

Embrace: My Story from Body Loather to Body LoverEmbrace: My Story from Body Loather to Body Lover by Taryn Brumfitt
My rating: 4 of 5 stars

I met Taryn when she bought the documentary to the UK
– and enjoyed the buzz and the storyline there. There’s more in this book than I expected from the previous media coverage/film, and it was a swift read – and a very open one – watching Taryn give up other aspects of her life to get the message out that health is as much mental as physical and that there are things we can do to nourish ourselves rather than the stick that is diets.

Autoethnography as MethodAutoethnography as Method by Heewon Chang
My rating: 5 of 5 stars

I’ve had this book on my desk for over a year, as I’m planning on writing an auto ethnographic piece on having cancer in a digital age – and this book gives a really helpful – dare I say – introduction as to how to undertake this in a way that is less ‘self-indulgent description’ and more an ability to be able to give a critique of social conditions in academically and methodologically solid work.

SecretsSecrets by Lesley Pearse
My rating: 4 of 5 stars

I always enjoy a Lesley P book …. they draw you in with a great saga, a mix of difficult tangled lives – sometimes you wonder at the way they fall into place at the ends but enjoyable reading!

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