Who's going to get the chicken?

Hey! Is that you? It’s so good to see you!

Welcome to more ramblings! I’ve been rambling away to myself for weeks but I keep forgetting there’s no one there listening….situation normal…phew!

I usually blog when a random trigger crops up, which makes me think of lots of funny things which have occurred, or keeping occurring, on this non-stop roller coaster of mirth which we call C treatment. You C, in cases like mine (as ever, I only speak for mine), C is neither the problem, or the source of the hilarity. It’s the treatment. It’s such a c. C what I mean?

Oh, the lols that pinged out of me this morning, from every pore, when I received an email from one of the Churchies, who I’d seen at the 8am service Sunday just gone, to tell me that she had shingles! Laugh? I nearly Tena’d myself. (Well, I did actually.) You couldn’t make it up – she’s only gone and got shingles! Shingles??!!! Hahahahaha! Stop! My rib cage can take no more!

Now I’m not a beartless hitch – I hope you know that. There’s a point to this. The lady in question kindly emailed me, as she’d gathered me into a warm embrace on Sunday morning, without knowing that she had the dreaded shingers. Her doc only diagnosed her last night, and told her to steer clear of babies, small children, and me. Well, not just me, to be fair, though she’s usually pretty good at that… No, those whose immunity has been compromised because of chemo.

I thought that was really kind, given how she must be feeling. I’ve never had shingles, but friends of mine who have, say it’s like burning from the inside out. Ok, I do have recent form there, but not in as painful a way.

So, had the events of the last couple of months not happened, I, like you, would’ve scoffed away and thought no more of it. It’s 12 weeks today since I had my last chemo, after all.

Not so, it seems. I may have covered this before, but when you sign your consent form for five months of cytotoxic lols, you have to acknowledge the risk of mortality (i.e. ‘Uh oh…I could be deeeed’) which chemo brings. The reason people snuff it from chemo (and it is SUPER important to stress, this is from chemo ALONE, not the overall C or the combo of C and chemo) is because your immunity is hammered to the floor – so you can’t fight a fairly regular infection – even a bad cold, or flu – in the way you usually would. A simple infection can lead to sepsis, super quickly, and there’s only two ways out of that situation.

That’s why you have to monitor your temperature many times daily, constantly, during chemo treatment, and for some while after. It’s the only true indicator that things could be about to go whatnots up. That’s also why, if you’re around someone having chemo, you have to be absolutely honest and mindful of anything you have, however small it seems, and think whether that quick coffee or delivery of a loaf of bread is wise. I had absolutely no idea about this pre-C – or rather, how important it can be.

My weirdo Onc explained this aspect to me at the time of the biro-snatching session when he’d sold me up, hook, line and Cinker, for his five month re-tox programme.

“Yeah – sepsis. Can be fatal. I’ve only lost two to that, in 17 years.”

He leaned back, looked over his glasses at me, as though he was expecting some kind of applause to break out. I leaned forwards, looked over my glasses at him, and said, “Butter fingers”.

“Yeah…” (btw, he says yeah a lot, and is a bit hippy – not in that, he’s a bit broad in the mid-beam, but just in a laid back sort of a way). “One was just so ill, he had it everywhere. But the other was just too polite. She knew her temperature wasn’t good but she just sat there waiting for it to pass over. Three days later…” (motion of throat slitting)..well, you just need to keep an eye on things. Yeah?”

“Yeah…I will”, said I, then rang the carer to ask him to go and find a really good thermometer.

You can feel rubbish during a 21-day chemo cycle – but your temp can be fine, nestling within the range you’ve been told to keep. Equally, you can feel super duper, but find that your temp is out of range.

I turned up to my last chemo to the very warm, very deep, possibly slightly suffocating, bosomly embrace of lovely Nurse L. Crikey, that’s a pair to behold, I contemplated, while struggling for breath deep within them, not of my own volition I must add.

I love Nurse L; she’s just so good at hugs, and love, and naughtiness. Once, she gave me loads of surgical gloves off of her trolley so I could still do seed sowing without risk of infection from the soil; another time, she let me vape while she was doing my pre-chemo assessment and hung a ‘do not disturb’ sign on the door to stop her boss coming in. There’s more; but not for now.

Nurse L, shall we say, is a traditionally built woman. (credit for that to the author Alexander McCall Smith … it’s a fab phrase.) She has all the right things in all the right places. Once I’d extricated myself from her 54 double Gs, she set to work to prep me for my last chemo, with her characteristic, very soft, very gentle care. She took the dressing from my PICC, layer by layer, to reveal the business end of the kit.

“Fuck me!”

(I think it’s a medical term?)

Peter the PICC had been in there nearly five months – and he was expressing a need to get out, by emitting green and red stuff. Head nurse arrives, inspects, then makes a quick call to the Onc, who said, in his usual charming manner: “give her the chemo, then rip the PICC out….yeah..???”

The last chemo has dripped through and then, Onc’s instructions are carried out. It’s Nurse L who comes in to rip the PICC. Gone are the hugs, the love – or, not gone, but she is on a bloody mission. As she is saying, “this won’t hurt”, I’m imagining her lined up fair (and traditionally) square opposite the (traditionally-built) tight head prop in the Portsmouth RFC v NZ All Blacks scrum.

Two feet of intravenous line, inserted under anaesthetic, five months prior, come hurtling out of me faster than a five-sachet dose of Move-it-all. Whooosh.
As I’m getting myself together to leave, I feel all wibbly-wobbly, and start shaking.

It’s ok, I don’t need drama – we just need to be home, and we get there. Mini carer brings me dinner in bed because she’s just super. I’m drifting off to sleep but think I must just check my temp. My safe range is 36-38.

Oh. It’s 34.1…and every five minutes, it’s getting no better. I thought high temp was a bad thing but low was ok. Don’t we all think that?

Upshot is, emergency admission into Acute Oncology within the hour, tubed up and fed with IV antibiotics for three days; contracted C-Diff virus from the antibiotics in hospital, came home, got better. Fine.

Only two weeks ago, when I saw my GP, due to another infection, did I realise that I was pretty close to being the third on my Onc’s list. Yeah. I hadn’t been bothered at all – but apparently the old kidneys were shutting down – the start of … hilarity, obvs!

About three or four weeks ago I woke up at night with lady wee problems. Given the previous drama, and not knowing where my immunity is yet, I wasn’t sure if an over the counter remedy would be enough to sort it out. Called the doc’s surgery – gone was the three week waiting list – I was in like Flynn, with a right old ticking off for leaving it so long, and sent home with eight antibiotics a day to take. Bloods were done – it was a kidney infection- and it turns out I’m still super low on the white ones. These are your immunity warriors, so it means I’m still prone to infections, from very normal things. I have my bloods done every two weeks now.

New thing, Monday this week – I’m in for a blood test, and my lympho scar is emitting gunge – nearly eight months after it was created. Bingo – we’re back on infection alert once again.

Weird, isn’t it? I was all ready to go after the last radiotherapy – I thought that was it. Hurrumph.

So what’s the point of this?

First – to thank Churchie for her email – I’m seeing Onc next week, so will mention it.

But…

I think it’s mainly, to a couple of lovely friends who are respectively 3 and 6 months behind me on this process: take your bloody temp at all times – even if you feel well.

And to those ladies (you know who you are) and others – even if you’re 12 weeks clear of cheeeeeeeeeee-mo, and six weeks clear of radiooooooooo – this lovely stuff doesn’t leave you for a little while yet. I didn’t realise that.

Also – to the amazing network of people who support people like me – you may dearly want to see your mate who’s having this treatment, and trust me, they will want to see you even more: but just please be honest if you’re not up to par.  Even a bit of a cold can cause all sorts of bother – yet you, nor they, may not realise it. I only got infected from myself, or rather, the line I’d been wearing. Didn’t see that one coming at all.

None of the above is bad – it’s just learning, going with the flow, as we always have, and always smiling and laughing our heads off.

Me and the boy carer are off to the c soon, providing Onc is happy when I see him next week.

Yes. The c. The blue, warm one.

Just for seven days – it’s my first clearance for take off for more than four days max at a time, this year. Our first holiday for 18 months. Yaaaaay!

Above all, he needs it. He really does. And I can’t wait to look after him, as he has me, once we are there.

Yeah.

Pip pip x

 

 

 

 

Sent from my iPad

 

Hello hello! Are we all enjoying the summer? (Falls over lolling!)

Yes folks, I have completed radiotherapy- and I’m positively glowing. Like, literally. From the inside, out. I might be like a walking microwave (I wish I’d been around in 1912; I could have trailed my big toe in the water from Southampton onwards and averted the unpleasant and untimely death of 1500 passengers including Leo de Bloody Caprio), but it’s all joy, and, it provides a rich source of validated, evidence-based ramblings to prove that this whole treatment lark is choc-full of upsides. For me, at least; I must stress that whatever I say is only medically, and attitudinally accurate for me. I am a bit weird, as you all know.

I’m reflecting with hilarity because I reckon I’ve been like a mobile microwave since January.

The first week of 2017 was MammoFest. I hear it’s going to outsell Glastonbury next year. This is where they squish your Lady Lumps into a vice-like, vehicle-crushing machine (lols aplenty! Ahh, how time embellishes the mammory!) Actually, it’s not that bad, but I shudder to think what it’s like if you have silicone implants (Pop…Pop…Splatttt???).

So they get you captive and then they just bugger off, because the radiation is too dangerous. For them. Not for me, obvs! No, don’t worry about me love, I’m stuck here with my boobs in a vice and you’ve FECd off! Fine! I had 3 of those that day – not a comrade to be found.

What was next? Ahhhh – February – the infamous blue dye injection. This happens within 24 hours ahead of surgery; for me, at 10am on the day of, in a different hospital, with the op due at 1pm. It’s done for the surgeon when she’s busy hoiking the tumour out. The dye provides a visible track of any random cancer cells from the tumour to the lymph nodes in your pits, which the surgeon sees on a screen while she’s hoiking. (I think that’s roughly how it goes).

So anyway, under another radioactive scanning device, a lovely person comes in, sticks a very big needle in your thrupnee bits, then pisses off to a safe zone, presses some buttons, and you’re left there basting away. (By the way, during surgery, what with all that cutting and so on, the dye leeches out to the surface of the breast. I’ve still got blue tits now – and I’m not talking about winged wildlife in my garden).

Oooh… what then. Oh yes! March! The fitting of my PICC line. I must apologise – I’ve never defined this acronym before. It’s a Peripherally Inserted Central Catheter. It’s an intravenous line (a lifeline, in fact) which gets poked in, under local anaesthetic, just by the crook of your elbow. Then it goes up a vein inside the inner arm, across the inside of your chest wall, and down into a chamber near to the heart. So, I’m guessing for me, that’s near enough 2ft of cable- and it’s yours, free, for five months (in my case). There are other ways to receive chemo – but the PICC was considered the best way for my case, my cancer, my physiology. I must say, yet again, I’ve been very lucky; not only can you receive chemo through it, you can also have blood taken from it – effectively removing the need for any arm-based injections, for anything, for a nice lot of ages.

Ok, so back to the matter in arm. Guess what. It’s X-ray again. This gives the PICC fitter (you can’t get quicker than a fit PICC fitter!) a visual guide, on a swivelly screen, to get that lot from my inner elbow to the chamber of, well, dumping of all things cytotoxic.

Here we go again. Having met the (rather nerdy, slash, weirdly interesting ) PICC fitting consultant in his chamber of mirth, we have a quick chat – then before you can say ‘radiation at this frequency could harm your unborn child’ (Ha! Gotcha there didn’t I!), suddenly I’m flat on my back again (you can take the girl out of..), on another consultant’s table – and everyone else in the room appears to have scarpered.

Not for long this time – I’m heartened! Back they troop, all smiles. I smile back. Until I see that they’re all clad in massive lead overalls. My right arm is pinned to the table. (if you’re lucky enough to have breast cancer and lymph node removal in just one side, like moi, your PICC needs to go in the opposite arm).

The room was at a hush. I pipe up: “um, hello, what about meeeee??? I think I’d be a Medium if you have any spare overalls?? …. please???”

Nerdy weirdy geeky’s tableside manner has vanished.

“I’m about to insert your PICC line, and I have a screen here which will guide me. You can watch as well if you want to?”

My sense of humour, by then, was on a one way ticket to chemosville. Which, I may add, was a FEC load more fun compared to that part of this never-ending process I’ve been scampering through.

Then, after chemo, I get a radiotherapy planning CT scan. Yes – the amazing adventure inside a giant polo mint. It’s done to build an internal map of my chesticles, which they’ll need for alignment during radio treatment. My arms are put into grippy things above my head; a snorkel type thing gets shoved into my mouth because I need to hold my breath while I’m in the polo; and we’re near enough ready.

Oh – except for one small detail. I’m about to get not one, but three tattoos!! Jeez Louise – 50 years untatted, and I come from Somerset, and now I get three and I can’t even choose the design. (I’d have gone for F..E..C, obvs.)

People who haven’t been through this process scoffed a bit when I told them. ‘Hahaha – but it’s not really a tattoo is it, just a marker pen.’ Nope! It’s a buzzing electric needle people, with actual greeny-blue ink in it; it bloody hurts, and you end up with three dots on your boob area afterwards. I saw a friend a week or so ago and she showed me hers which she’d got given 20 years ago. Again, if you’ve not had this lark, I don’t think it’s helpful to the patient if you express your assumption that you know more than the person having it …us cancoids do tend to know what’s going on with us 🙂

Anyway, once I’m all rigged up and pinned down, off they FEC! Into a room with a big window where they can press buttons and watch me fry. Cheers girls! Lovely to have met you!

Next stop – radiotherapy. Where chemo was measured in cycles, radio is measured in fractions. Great – exercise and maths – two things I am absolutely useless at.

I’m fully signed up for 19 squirts of radiotherapy. That’s 15 to the whole chest area, and the final four described as a ‘turbo boost’ to the tumour bed on the left. These happen every working day, over four weeks (you get weekends off for good behaviour. Amazingly, I did. Read on!).

Because Terry the tumour was a leftie, on the chestie, and that’s also where your heart lives, I have to have my radiotherapy squirts (ok….’fractions’ ; the consultant wasn’t overly impressed with my homemade nomenclature), while holding my breath. Why, I wondered?

There’s an official name for it but baaaasically, if you hold your breath, it inflates the lungs, pushes out the chest wall, and those things reduce the risk of the targeted radiation zapping your heart in the process. I mean, nobody really wants that, after all this, do they?? I get it. But can I do it??

It’s made both easier, and more difficult, by the fact that along with the thing shoved in your mouth, you also get to see what the radiologists see on their screens once they’ve set you up and legged it to safety in a different room, of course. This is why I’ve attached a picture (above) because I’d exceed my word count if I tried to explain it just through this, and you’d be asleep.

Right, as you can see, I’m there with my arms up in a personalised holding position. I’ve got my new favourite shoes on, obvs. We planned all this at the CT session (not the shoes) and it’s all pre-loaded on the computer. My Malbec delivery system is firmly implanted in my mouth. And look – is that me sunbathing with those glasses on? Think I’m slacking??! Bear with me.

Through those specs, I see the screen which the team see (IN ANOTHER ROOM I might add – those girls look happy because they’re just off to safety!). I have a resting breathing target to meet (shown as a wiggly red line along a horizontal bar on the bottom of the screen). I have to breathe normally, via snorkel and mouth, not nose, to hit the middle of the bar. For a while. Then – excitement! A green traffic light goes on – and with it, another horizontal bar appears at the top of the screen. That’s the cue for me to inhale through my mouth, hit the middle of that bar, and hold it there, for 40 seconds. A red traffic light comes on the screen, and everything inside me exhales. Noisily. Awks. I do this three times.

Now, see those panelly things and that lumpy round bit either side and above me? The minute the girls go, those bits start whizzing all over me – closer, further away – it’s like some Jane Austen-penned dance routine as they approach, retreat, turn around and change.

Anyway, my appointment is 20 minutes. Most of that is the set up – those tatts I had were for a reason, as they line up with the green laser lights that you can see to ensure that the zapping goes exactly where it’s meant to. That takes time; and two professionals who check, record, cross check, shouting lots of numbers to each other to make absolutely sure – and then get an Uber to the safe zone.

Sorry that’s taken so long – and also, if you knew all this already.

***********

Now, I’m not a competitive person, as far as competing with others is concerned. It happens at work, and in life – you see people crawling all over their friends, grandparents’ and children’s heads, right up the very backsides of the person they need to impress, dropping lies en route, just to feather their own nests. This stuff leaves me cold – I just can’t be arsed. But I am hugely competitive with myself – in that, I just want to improve on things the next time I do them, whatever they may be. And only at my own expense: therein lies the difference, I think.

I have the first radio appointment of the day – I asked for that slot, daily over 19 days, just so as it’s done and dusted, and I can compete with myself to drive back quicker than I did the day before to the garden, to complete more weeding than I did yesterday, before conk-out time, which is still around 1pm. But could I make that 1.15pm the day after?? (It’s quite tiring, being me.)

So after a few days of this lark, sat in the holding area with other patients, due after me, with varying degrees of mobility, I start thinking. I can nail this. I must be able to get in and out in under 20 minutes. Then, the team can start their day ahead of schedule, and I can weed til my heart’s content until I need to go splat.

Voices in your head aren’t great, but they are compelling. For me, the sense of potential achievement as I chug along the treatment conveyor belt, has been critical. I’ll go into that another time.

So – back to the daily zapping.

(Interesting: the consent form for radiotherapy listed potential side effects as heart disease, lung disease, other cancers – particularly melanoma – skin blistering and fatigue. I only bothered looking at the last one, and signed as enthusiastically, but a little more tired, than the chemo one. Bring it on! I must stress, the listed side effects only apply to me and my case).

So – all seems straightforward. I am in the waiting room. It’s day 4 of 19. I’ve got the general gist of what goes on – what I need to do with the breath hold lark, the fact I have to rely on myself to do it properly, the need I have to get back to the weeding. I’m formulating a plan. I can save time here, I know it.

For a start, I’m quite mobile. Not so the lady after me, who comes into reception in a wheelchair. For second, I have to strip to the waist for my treatment – so I can plan what I wear to make sure that’s quick to get off. Gone are those Laura Ghastly high-necked frocks which so bedecked my wardrobe before (pah! As if!) – I need release-me-quick attire. Plus I really need to focus on what I have been asked to do. It’s no good lying on the rack thinking of what you need in Tesco- you’ve got to give it your all.

I set myself a target, just to do it quicker today than I did it yesterday.

First job: when you’re called for your turn, you can see the nurse approaching along the corridor towards the glass doors she’ll go through to call you in.

Time to get my top off. I must admit, it took a while for the other patients in the waiting room to get used to this.

Next: get on the rack. Fine – they leave a modesty sheet (blue hospital paper stuff) behind a screen type thing for me. Sod that – I’ve already walked half a mile with my nellies out – no need for that in here, think I!

Then: get on the rack, put your arms up, get something big shoved in your mouth (stop it SG!); and away they all merrily go to safety while toxic radiation permeates my boobs and my soul. No, actually, not my soul! Just my boobs! (I just heard a snippet of the Verve while I wrote that!!! – it was a bitter-sweet symphony).

Right – next thing – I can absolutely do these breath holds properly – or, better than yesterday. If I don’t hit the right point on the resting breathing graph, consistently, I don’t get the cue to hit the breath hold graph – and if I don’t get either right, I won’t get the radiation. I’m understanding my bazongas need the radiation.

Suffice to say, within 5 days, I’d broken all known previous records and got my treatment time down from 20 to 4.5 minutes. Like I say, it’s very tiring being me.

Next stop is a bone density scan. Now…people have this for all sorts of reasons…and maybe, they haven’t spent the last 19 days being in Star Trek territory. I don’t know. But for whatever reason, I absolutely p’d myself laughing at……..this: (Top pic – I can’t work out how to get them in the right spot 😂😂)

I’m like, ‘WTF is this? An overhead projector? Call yourself a radioactive scanner???’ Pahh!!

Well, as you can imagine, this was quite a relief. No nakedness, no breath hold – just in, under, out. And! My carer got to stay with me all the way through ❤ I had this done because the endocrine (drug) therapy I have started can, and does, cause osteoporosis. So they take a baseline of your bones to see where you are at the start.

Other side effects of that drug? Hair loss, weight gain. Happy days! Ten years of that – it’s just too funny. Honestly- it’s just so funny! I honestly do not give a flying FEC, apart from the fact it’ll be hard to spin this blog out for ten years with exciting news of how I took a tablet. Or will it?? ….

So where I am I now? Well, my whole left chesticle (yes, including the nipp itself) is peeling – I got very badly burned from radiotherapy. I’ve lovely scabs and blisters all over my boobolas which double helpfully as crunchy nibbles should friends pop in of an evening.

Funny how we haven’t seen anyone for a while!

This treatment made me more tired than I’d allowed for. I can’t work out if that was because it was every day, and off the back of chemo, or because it does make you tired. I’m still tired – apparently this bit goes on for a while. We’ll just go with the flow, as ever.

I’m still cooking inside like a good’un – radiotherapy keeps doing its work for at least 6 weeks after your last treatment, my Onc says. So if you want your windscreen defrosting, your coffee warming up, your feet toasting, relationships with your in-laws melting – I can help!

I’m your own, personal radioactive girl. Very warm thoughts, to you all xxx

 

 

Sent from my iPhone

Well, I’ve had the most super afternoon today! Yes folks, I’ve been for a two and a half hour information and pampering session, organised by Macmillan and on offer to all cancer patients in over 80 UK NHS hospitals. It’s called ‘Look Good, Feel Better’ (LGFB – American in origin hence the initial caps – whoops, time for more meds , nurse!). Anyway, sod the grammar – look at the state of mine these days – it’s fabulous, it’s a charitable organisation, and it’s totally FREE to the patient.

Although you might never wish to belong to this club, every member gets the VIP treatment – and this is just one of a myriad of lovely things you can access. (It’s almost worth getting …. no, scrub that, it’s really not.)

LGFB is designed for people dealing with the visible effects of cancer treatment, or are generally suffering from a lessening of confidence due to that. It’s supported by 40 companies who donate funds, products and actual make up professionals to the sessions.

Corr! What’s not to love?? I’d only found out about it recently when I was having a bad day with the Radio (I couldn’t get Woman’s Hour without a crackling on the signal) and the relevant ‘Ologist (that’s a Radiologist – I’m on fire! Literally!) pulled out some leaflets for me. I phoned, got myself booked in and here I am! Not quite LGFB – but, well, Scrubbing Up Better and Feeling A Bit Less Uggers!

Now, believe this or not, I’m not a lover of that kind of one to one attention where they get up close and make lots of fuss over you – in fact, I really don’t like being fussed over at all. I mean, I’d be a bit hacked off if either of my carers forgot to get me a birthday card (DID YOU READ THAT, YOU TWO?), but I don’t need or want presents; it makes me twitchy and embarrassed. I haven’t been comfortable with well-meant, but what I construe to be over-fussing (for me) throughout this whole process. But when the fussing dish on the menu is someone right in my face, poring over my open pores and trying to suggest helpful solutions for my thread veins – urghhh – anathema.

Soo…with that in mind, having booked the session today, it was with no small trepidation (OMG! That’s called litotes – exemplified by John Milton himself, in Paradise Lost! Still got it – sort of) that I entered the Chamber of Pampersville.

One of my biggest bete noirs about this type of stuff is a lasting, often terrifying recollection of my pre-wedding make up trial, just over two years ago. I’d booked that (because apart from slathering on the ‘scara, which I can’t do at the mo, I’m pretty rubbish at the rest). To keep my options open, I went for a session at a national, multi-make up stockist high street chemists. Let’s just call it Shoes.

Bear with. Amazingly, this has a point.

The make-up artist assigned to me had just left school. I knew that, because she appeared with all her crayons, pencils and potions in a Hello Kitty pencil case. She was, I’m guessing, about 53, but good on her for trying something new.

Anyway, she was super-lovely, effervescent, and very enthusiastic to get started. This was to be her first ever wedding make-up trial (- oh fab), and because of that, her supervisor was going to be observing (double fab). I explained that I was after a very subtle, classic, muted look – something along the colour palette lines of, say, peaches and cream. Not when they’ve gone off, obvs!

She set to work.

‘What about some of our new Damson Damsel shadow on those lids? Bring out the colour of them eyes?’ The supervisor is already busy clacking her biro into tick-boxes on a clipboard.

I am speechless, my brain drowning in the potential fuss of me making a fuss.

‘If you like it, we’ve got that on offer til Saturday, if you buy two other products from our raaaaaange.’ (clack tick, clack tick, clack tick).

‘Ooh that Damson’s lovely on you!’ (clack tick); it goes really nice with Scarlet Lady on the lips!’ (Perfect for a divorcee’s Church wedding, think I, while wondering about getting some earplugs from further up the shop a bit for all the ticking and clacking going on).

I just bloody gave up. It was the potential deafness that was going to get me, to be honest. What more could she do, clack-istically, that could be worse than this? Weary, I let her get on with my eyebrows (clack, tick) and dozed off, powerless.

Oh dear. Time for the big reveal! Finally, I get to look in the mirror. Ta daaaah! Holy Shit. My peaches and cream are actually overripe plums with strawberry sauce round the mouth – and crawling across my brow are two, very surprised-looking, very over-fed, slugs. Suffice to say, I clacked off out of there faster than I knew my legs could ever carry me.

This is quite a long post. It brings me back to today’s session. As you can see, I was slightly worried about the prospect of a makeover. There’s a couple of reasons why this was exacerbated on arrival at LGFB HQ, in the Macmillan centre, today.

Number one – and this ain’t going to sound nice – but, when I got into the room, with the other 8 women, there was already a ‘cancer-off’ going on. In my last post (not the one I put up, and then hoiked down within 12 hours, lol!), I riskily took the opportunity to highlight some helpful ways to talk to cancer patients, if you haven’t had the thing yourself. This, as I must continually stress, was only based on my experience.

But I’m afraid to say, patients themselves can be equally challenging and, well, less than considerate. Often, in fact, in my experience, they can be damaging – to your expectations, your hopes, fears, and your confidence.

The ‘cancer-off’ reminds me so much of a classic sketch from way back beyond. Two old codgers are reminiscing about their respective upbringings. It goes, in sentiment rather than authenticity, something like, ‘you grew up in a shoebox in the middle of the road?? You were lucky! I had to use that shoebox in my sandwiches every day! You had sausage and mash for tea? We were so poor we had to eat my dad with no mash either!’

So the cancer-off has begun. But it’s coming from one, very new, very loud patient.

‘Your tumour was only 8ft long? You only had 15 boobs cut off? You’ve had 57 years of chemo? Is that all?” You get the picture. This was not a nervous girl, I really think that’s true. But the trouble, or rather the discomfort, was that she was holding court over 8 people who really wanted a bit of guidance this afternoon. Some of us had no hair; some of us bald patches – suffice to say,  8 out of 9 of us were not in possession of the full set of fluffy stuff, on head or face, that the good lord intended us to maintain. And also, you’ve got to stop and think; if that’s the case, some of us must be well along the treatment conveyor belt. We’ve possibly had nearly enough. I know for sure I’m bloody knackered, which is nothing compared to some of the other women in that room today. I felt that sort of talk was disrespectful to those women, with no hair, no energy, who’d come for a bit of confidence-boosting.

I just wanted to show you the other side.

❤❤❤

Edinburgh may have come and gone, but trust me, I’m aiming to get back on the case.

Sooo – we’re all settled in the room. Unfortunately, the racontreuse herself has plonked herself down next to me. Awks.

Along comes a swarm of therapists, some of whom are former C patients. This is nothing but good. Calling the room to order is an extremely – and I mean, EXTREMELY made up woman. (Notice the lack of the word ‘well’ in that sentence). I’m struggling to ascertain whether this is her real job, or she’s appearing as Widow Twankee in rehearsals for the upcoming panto season. I do know for sure that she’s not an ex-patient – she said so.

After the welcome, she tells us a funny story about being confident in make up (‘I’ve had my eyebrows tattooed already, ” overtalks the racontruese. “Even though you  don’t lose them in chemo!”, she barks to an eyebrowless, chemo-ragged room.)

Back to the kind host.

“It’s so funny. Nowadays I can put my make up on in the dark!”

This is extremely obvious to all present in the room.

“In fact, once, I did!” (Really? Just the once, you say?)

“I’d gone on the bus with my grandson to the pictures. We were at the end of the film and I thought, well, I’d better reapply my lip liner before we go back out. We’d got the bus home and it was only then I realised I’d used black eyeliner on my lips by mistake!!! Lovely little Troy – he never said a thing on the bus!”
(#pissinghimselflaughingatnanny).

Next, the make up artists are circling, looking for three apiece to assist. I’m furthest away from Flossie the Cinema Cosmetic queen; but still, as we are close in age, I’m very aware she’s homing in on me and my disintegrated eyelashes, brows and hair. Panic.

I’m so uncomfortable about the whole thing by now, what with the gobby racontreuse next to me, (blah clack blah tick blah tick clack blah tick clack); memories of fat slugs (careful, Viz fans), I reckon I’m about 30 seconds away from saying I need the loo and running to the hills. Forever.

Then – a tiny but nonetheless, compelling, light falls from two directions upon my table.

Number one: just as I’m about to leg it, a beautiful young woman, wearing a badge saying Clinique – yes, that one, not the bloody clinics I’ve been attending for nine months – seems to be near to my end of the table. With brushes. And, oh, is that a massive bag of your employer’s make up I see beside you, Red Riding Hood??

Flossie approaches more earnestly. I need to act.

Well, accidents do happen. Like the one JUST AT THAT MOMENT, when the beautiful Clinique goddess was moving away from me and – whoops! – my empty plastic water glass seemed to fall off the table by her feet, causing her to stop, assist me, and then, well, kindly offer to do my makeover for the afternoon. How kind. (Im a v v badly behaved patient: have I told you about my other, terrible misdemeanours? Hmm… just like the radiotherapy chapters to date, I promise it will be worth the wait.)

And behold – as Flossie sought, nay, beat her way to my ageing face with her failsafe black eyeliner remedies – the second light revealed itself. The other host for the proceedings announced that we’d all be given a make up tutorial using our very own bag – worth £350 – of Clinique, Lancôme, Chanel – and we could take it home!

Now as a girl who’s completely guided and informed by her strict moral and ethical code (just parped myself I was lolling so much!), naturally, I felt terrible about grabbing this and legging it as fast as I could to the car park. Oh! I meant accepting it and staying for the make up tutorial!

Anyway, like all the other women in the room, I did; we each had a fantastic makeover, and fab lessons in how to look a bit better when we all feel a bit shit. And that’s why I’m such a huge supporter of Macmillan: the patient actively, physically feels the benefit of its work.

So, a busy, but amazing day.

Radiotherapy lols coming very soon, I promise.

Tick tick clack x

 

 

 

 

 

Sent from my iPad

Aargh – – not so much drama dahhhlings ce soir but more, reflective stuff.

Today, I should have had chemo – every three weeks, every third Wednesday, since March 15th. But I don’t have to – I’m done. At the end of the last one I ended up in Holby Chemo Casualty A&E city for a three day mini break, but that was a blessing – read on.

I’m about to enter a new phase. I’m afraid this blog is not a funny one, but there’s some things I want you to know. And I think the time is right now.

What’s prompted this, you wonder?

Well, this. I spent some amazing hours this afternoon with some dear friends who I knew in Bath – J & T- when I took my first professional job there. It’s the county of my birth, and near to Bath is my original home. I’m from Somerset, born and bred, strong in the arm and thick in the head! That’s me, 100%. I sez it as I seez it.

Anyway, when I first knew J&T, 25-odd years ago, T’s brother got testicular cancer. That was a time when chemo took 12 hours and the drugs were so shit that T’s bro couldn’t move his eyeballs without wanting to chuck up in a cardboard bowl, or anywhere.

Along this road (I might have said ‘journey’ up front in this blog, but please disregard that, it’s hideous), many things have cropped up which could have de-railed me, and my two, much loved carers.

I’m going into a new phase tomorrow- just a bit of radiotherapy, every day for a month – a piece of FECing piss compared to pissing FEC. I’ve no idea how it’s going to go, but as usual, my assumption is that I’ll smash it before it smashes me. Worked so far!

What’s prompted this post is hearing about, and remembering, T’s brother S, who is very alive and very well, busy working in Switzerland don’t you know – and all of that making me realise, as if I didn’t already, how bloody lucky I am -and how much needs to be said to de-mystify CANCER, and its treatment, today. Or at least, breast cancer. It’s the only one I’ve had. They are not all the same, and even the same ones are vastly different. I only know about mine. So this is for S and his family; I cannot imagine what he went through all those years ago.

The C word: nasty, isn’t it. Not one you want to hear.

Luckily for me, I barely heard it at all – the diagnosing consultant was so rambling, mumbling, shy and crusty, I couldn’t work out if he’d said I’d got it or I hadn’t – bloody hell, that was poor. I only knew because a nurse turned up with tissues – but I had nothing to fill them with.

Like it or not, we’re nearly up to one in two of us who will get this irritating thing. My thought was never, ‘why me?’ – more, ‘why not me??’ So, from my point of view, I needed to woman up and crack on. Unlike S’s cancer, mine is absolutely the best one to get, at the stage I got it. How lucky I’ve been.

I’m reflecting in this way, because I have thought long and hard about doing so; I’ve thought about poor S and what he had to go through 25-odd years ago; how much people benefit from R&D around cancer, and what a difference that has made to patients’ lives over the years. Patients like me.

Ok readers. A few tips, from my point of view, and also, what I wished I’d not said, and had said, to cancer patients in the past.

1. I know everyone we know has had, or is having, cancer or cancer treatment. I’d say it does not necessarily benefit the new patient to hear about those experiences. As I read recently, “if life serves you lemons, don’t tell me about your Auntie who died of lemons.”
Ask the person how they feel about it. Take your lead from them. Don’t make it all about you, because you are frightened of the disease; it’s not you that has it. Relax and listen.

2. Armchair Oncology: Just… stop. Stop it now please, never do it again – unless you are an actual Oncologist who happens to be sitting in an armchair when we’re chatting.
I think there’s a bit in all of us, when we hear that someone known to us has cancer, the first thing we want to know is, ‘of the what?’.
Once we know that, we do a 30-second mental scan, comparing what we know of ourselves, to what we think we know of the sufferer. It’s natural: Maslow had a point when he put Survival at the base of his pyramid of human needs. Assume nothing: it’s one in two, folks.

3. Following on from the last point, if you have a view of why someone has got cancer ‘of the what’…it’s probably best to keep that one to yourself. Patients, I’ve heard, really don’t appreciate that sort of opinion voiced to them, unless it’s from their Oncologist. It’s not a conversation I’ve had with the five different Oncology consultants I’ve had in my own particular process. It’s irrelevant, the ‘why’ – it’s much more about the ‘how’ – i.e., how are we going to get it out of you so you can survive decently. My Onc and I talked about this and we resolved to joke that I have breast cancer because I have breasts. I’m not expecting testicular cancer any time soon. If I get that, I’ll go back to the people who told me why they thought I got breast cancer, settle down by their armchairs and readily listen to their opinion.

4. Appointments- social or otherwise. If a patient undergoing treatment makes an arrangement with you, at a certain time, please try to stick to it. That person may not have seen anyone all day, and all week, and will be looking forward to seeing you. (This goes for bereaved people too.) These patients will likely have built in a rest before you come; tidied their house even though they were knackered; be waiting at the window ready to put on a show. For these people, turning up even ten minutes late can be distressing.

5. People have been amazingly, unbelievably kind and thoughtful – I’ve had offers of absolutely every kind of  help; dinners have turned up at the door after chemo days; I’ve had lifts to every bone marrow injection the day after chemo; I’ve been sent socks to keep my feet warm during treatment and people have messaged me on the day of chemo, every time, to wish me luck. It’s been amazing and I am so lucky and grateful to have such fab friends. Something which a few of them have done might sound small but it’s been incredibly cool. It goes like this. People will kindly offer to do your shopping for you, and that’s fab, because Tesco after a chemo day is not fun. However, the problem with being British is that you’re far too British to accept. Trust me, I’m never going to ring you up and give you my weekly shop to do. Never. However – if you text or whatsapp me (better than ringing – there’s lots of sleeping involved in this lark), and say you’re popping to Tesco later and do I need anything…well then I might look in the fridge and realise I’m nearly out of milk. Britishness permits that, just about.

6. Hair. My oncologist told me that most breast cancer chemo causes hair loss. It’s the E in FEC (not the F, as I mistakenly said in a previous post). I opted to give the cold cap a go, and as a result, I’ve kept, say, 70% of the hair on my head. But even if I’d opted to go without the cap, and lose it all, why does everyone tell you you’re going to be better off going to the hairdresser and having your hair cut short before chemo even starts? Crikey, I’ve been utilising every strand I’ve got left because I can comb it over my burgeoning bald patch and become the master of disguise! I’m not ashamed of the loss – I’m actually rather proud of it – but it makes it a heck of a lot easier for other people,  because, just like when you’ve got a massive spot on the end of your nose, it’s really hard for people not to stare at the thing. And why do people assume I’m going to get some comedy wigs? A clown, a 70s Afro, a pink bob. Perleeeease. I’m all for poking fun at myself, as I hope my normal blog posts show, and I spend 90% of my life laughing my head off (the other 10% sleeping).  But to put myself up as a laughing stock? That’s different. Very, very different. I know it works for some people – I get it, and I really admire them for it. But we are all different; there’s no right or wrong response; you find your own path. This one was not for me.

7. What to say
This is a toughie. Now I know more, I feel so awks about all the naff things I’ve said to others in the past, even to my own mum. Sorry mum up there flying high  –  what a donkey I was.  The thing is, it is really, really hard to say the right thing – how are we meant to know? And guess what – you don’t have to say anything – it’s not compulsory. Make like that classic artist of our time, Mr Ronan Keating – you say it best when you say nothing at all.

The worst thing I’ve heard was from a fellow BC sufferer, which literally scared my pants off. (This was nearly as bad as when someone told me I ‘obviously wasn’t having proper chemo as I looked too well. Give a girl a break!! I can’t win, lol!!). But then the best thing I’ve heard was also from a fellow BC sufferer, who reinforced my view, from her own experience, that you put your head down and bloody crack on. Keep the shit bits with your family, push drama away, get those dramatic people away from you, find your path and crack bloody on.

The best thing I’ve heard from a non-BC sufferer, on breaking the news, was;

“Oh shit! I don’t know what to say!”..

Followed by:

“I must go and get myself checked out”

Yes, people with breasts, women and men alike, you must. This was absolutely the best reaction I heard.

I also heard, “I’m so sorry this is happening to you.” I loved that. Do that when you hear of someone new, it’s really heart-warming.

Whatever you do, never say “At least they caught it early.” Unless you are an Oncologist, this is meaningless. And anyway, in my experience, they don’t tend to say it. Early detection is very important to outcomes – vital, in fact – but small is not always beautiful, and neither is it necessarily early.

Do you know how I knew it was serious? Like, my lump thingy?

I am officially lumpy. I’ve had 3 mammograms in the last five years because I’m good at checking my boobs and, because I had an early LadyPause, two years ago, just like my mamma, my hormones are confused and I get cysts in my boobs.

When Escape to the Country isn’t on, I like watching 24hrs in A&E – I just so admire what they do, and having been treated in A&E about two weeks ago because of C stuff, I was keen to observe how it worked away from the telly.

Anyway, there was a nurse on 24hrs in A&E about 3 years ago. They were doing a little interview with her ahead of the blood and guts bit. She’d felt a lump in her breast and then looked in the mirror to see how the two boobs squared up. She noticed a tiny puckering in the skin around the breast which had the lump. She said, ‘at that point, I knew it was cancer.’

When I got out of the shower on December 28th 2016, having felt, but not wanting to face up to what was going on for three months prior, I thought of that nurse and I looked in the mirror. The puckering was there. The next week I had mammograms and biopsies and scans on not one, but three lumps. Four weeks later they narrowed it down to one offender, and hoiked the little (growing) FECer out.

Girls and boys – like me, we don’t check our breasticles because we don’t want to find anything. Please woman and man up. It’s so preventable and so treatable.

My other piece of advice? Sack Dr Google and make friends with the Macmillan website, and the many leaflets they produce. They are for patients and for carers/those closest to the patient, or anyone who feels they want to know more about any cancer. There can’t be a question they haven’t answered, and it’s done in a sensible, no nonsense way. It’s also beautifully written, respectful of patient and non-patient, and really, really informative. No drama there, darlings. You’ll find a similar approach on breastcancercare.org.

But for the patient, the only person you should really, really listen to, for detail, is your Oncologist; they know your insides, your specific situation, your tumour, your medical history and that of your family. There is too much generalisation, I’ve found. You could have the same sized lump at the same stage in the same place as me; yet its characteristics will be totally different, and we will respond totally differently to treatment. Pardon the pun, but you can’t just lump them all together. That is why I’ve been at pains to keep saying, in my blog posts, that anything I’ve written is only medically accurate for me. Much like this post too – this is MY take on the things I’ve heard and experienced. You might be a patient too and have a totally different view.

I’ll be lolling my head off from under the radio beams tomoz – I’ll keep you all posted, if you want.

****quick update: back from radiotherapy and it was incredible, overwhelming, scary, fun and bloody hilarious! So you can expect a more typical post from me in the coming week or so. Thanks for all your great support, as always xx ****

 

 

 

 

Sent from my iPad

I love the journey to my appointments. There are quicker, shorter routes to the hospital, but this one is my fave.

Up the steep hill I go, me and the car in synch like a race-fit horse and rider, straining impatiently to reach the summit. Tyres eat tarmac, hooves gnaw turf. Up and up we go, collective hearts pulsing. We push, push, push.

And we’re up.

Now, we have the whole of the world ahead of us.

This is such a beautiful time of year.

Out to my right, nascent rays warm the earth, the harbour, the sea – and the prism of the island beyond. I can see the church we were married in, and the castle in whose grounds it shares home. Dots of yachts illuminate one by one; the smooth ripple of the morning breeze awakens gentle, swishing in the trees and the grasses below.

FEC, I’m off my face again!

I was thinking the other day, that if ever a screenplay was to be made of this little period of interesting-ness in my life, it would have to start with this journey. I mean, not that I’ve over-thought it or anything; but here’s the first six episodes.

The camera is side on from the passenger seat, taking in the views I’ve described, then it focuses in on the actress who would play me. As I’m a perfectionist I’d insist on say, Johansson, Winslet or Jolie (just so we get the likeness absolutely right). Actually, let’s just go with Winslet, as she’d find the driving bit easier.

Obvs we’d have Colin Firth in the carer role, just so I can write in a cameo appearance from me for every romantic mini-break you’ve heard about in my story so far. Oi oi!! I’ve loved Colin since I saw his Mr Darcy – and that’s not even a euphemism.

Once up, we’re free as birds. We have the two-mile run along the easterly ridge ahead. Life is very, very good.

Cut to Winslet, smiling, singing and laughing to Today on BBCR4 (off her head already), vaping like a beast, sitting patiently behind cyclists and learner drivers (this is the only part of the screenplay which would be fiction).

As we look down over the hill – behold! A monument bedecked in burnished gold and regal blue; Lidl, basking in the morning sun. How much better can life get?

We park at the hospital trilling merrily; the world is a wonderful place. We check in for six hours of non-stop toxic lols, and life is good. Then Colin comes in and gives me a peck on the cheek (full on tongues if I’m cameoing at that point), or some pile cream or something. I can’t cameo with Col the first 72 hours after chemo as I’d be physically toxic to him, with possible injury to Colin junior. This is a true fact. But I know you won’t tell him, will you. (As I received this information while I was alone with Head Honcho Chemo Nurse, there was that tiny, weeny, minuscule – yet quite enormous – part of me which wondered if that quarantine period could, maybe, just accidentally of course, translate in conversation once home, into five months. Shhhhhh! Virgo intacta!)

Good, innit! See you at the BAFTAs dahhlings! You’ll be in the front row, I’ll be in the Primark.

Why all this nonsense, you ask. Well, it’s simply because I am very, very happy. I choose that route because it makes my heart sing, and so I can’t ever arrive for an appointment – whether a tox-fest, or a refreshing morning PICC flush – feeling grot. I think you have to hard-wire some failsafe things into this malarkey, just to anchor you should you drift. This is one of mine.

The thing that inspired this post was the penultimate cycle, numero 5, which I have to say bloody nearly saw me off.

As the cycles have gone on, different things have happened. All of it was in the small print; none of it was guaranteed; and none impossible. I’ve had some, not all; and even some that weren’t listed in the contract. Never all together, seldom too far apart. That’s one of the many good things about this process – rarely are there any surprises. I love that.

So to discover that cycle 5 was an absolute head-banger, in terms of sheer fatigue, pukiness, and feeling generally sh*te, was a bit like knowing exactly what you’re getting for Christmas and opening the present you put on the list last because you’d run out of ideas. A touch of, ‘I knew it was coming but…uh…thanks’.

Well, talk about drama (see what I did with the opening? I’m here all week folks!).

This one brought together a collection of experiences which I had when I was pregnant – and which have happened separately along the way. As usual, I must stress, this is only medically accurate for me (in chemo and in pregnancy, I may add). I don’t think any of my readers are pregnant – unless you’ve been careless with the pill again. Keith.

Ok, let’s get down to it. Regular readers may be wondering if a guest editor has hijacked the first couple of paragraphs. New readers – we’re about to transition back to the usual coarseness. If that’s not for you, let’s uncouple now. #shagisland

Those who’ve had babies (listen up Keith, as I think it’s your first), here’s what I’ve observed.

Hunger: I’ve found that when I’ve got to eat, I’ve GOT to eat. My answer to chemo nausea is to eat my way through it. Face it head on like the bloody trouper I am. I didn’t put on four stone for my 6lb baby for nothing readers. I have form in this department.

I might have had my quinoa buckwheat organic grass fed bloody grass clippings for breakfast ten minutes ago, but that doesn’t mean I’m not going to get hangry. Immediately.

The other day, such a situation befell me. I’d had my wheat arse grass porridge, but found myself in the Co-op for a pint of almond milk and a chocolate eclair. I was Marvin – eating my bloody sleeve off. I’d have scoffed the carpet had they had one.

Our Co-op is lovely- small, friendly (unless you get V at the till, she’s a right cow), slow, gentle – and mainly filled with very old people shuffling along leaving wee in their wake. I feel so much more at home there now.

I was desperate. Not able to wait til I got to the eclair cabinet, I grabbed a warm Gingsters and ran to the emptiest checkout. In front of me was Mrs H from church, laying out her meagre groceries on the conveyor belt; three slices of corned beef and five bottles of Gordon’s – ( the norm in our Co-op, I must say).

Anyway, under normal circumstances, I’d have helped old Mrs H; I’d have got all the bottles into the articulated lorry waiting outside; helped her with her card payment (PIN is 3971 if you’re interested); helped her and her corned beef slices to the taxi waiting to take her home.

Not this time.

There’s one thing standing in the way of me and my pasty. And that’s YOU, Mrs H, you selfish lady.

Move it sista – I need FOOD, and I need it NOW.

Fat: Yes, I am. But hoping for a little miracle at the end, which is what I got 22 years ago, and still have now.

Sick: I have good drugs for that, but I do feel a chunder coming on every time the evil cold cap goes on. This passes after around 15 mins, when I still feel too rough to speak, so tend to put the cardboard sick bowl on top of the cold cap, in situ, to indicate to all that the panic is over and I’m back on form. As with my experience of being up the duff, I feel sick a lot of the time.

Once, after cycle 1, my carer made me my usual stove-top coffee and I was gagging at the smell. The stock market waited nervously for 24 hours; Italians put on their best Armani, and packed their bags of 00 flour to flee to a more prosperous land; the Lavazza factory bosses started whip rounds for staff leaving presents. Luckily, order was restored the very next day with my usual vat of the aforesaid brand washing in with ease. Mamma Mia.

Tanned: maaaaaajor upside for me. As with up the duffness, my chemo cocktail heightens the production of the thing in your skin which makes you go brown. I’ve always loved a good tan, but since my lovely mumma passed away from malignant metastatic melanoma four years ago, I’ve been a bit more sensible. Anyway, top news readers – on (my) chemo – you’ve only to think pina colada and you’re a deeper shade of pale. Wearing factor 30. Result. Shallow one, I grant you, but with no eyelashes, eyebrows, a big gut and an inflammable backside, I take all the pluses I can get.

On the eyelash front, now, I’ve only got some little stubby things left. I had long ones, but they were fair, hence I’ve worn mascara since I was born. As I’ve said before, and as my friends know, I have an absolutely massive face. So, with blonde stubby lashettes, my eyes now look like two pin pricks in a doughnut. I can’t do anything about this – no falsies, extensions, blah blah, until this cycle ends and I stop shedding hair from everywhere. This is possibly the one and only thing I’ve minded about my treatment so far, just because it makes me identifiable as a patient, and I reckon that until this point, no one would have known. Damn! Busted!

Tired: This is when I make like a clockwork toy, slowing running out of steam. I call it the ‘putt putt putt putt …putt….putt…….putt……..SPLAT’ scenario. And I know when it’s coming; if I’m with others, funny things start happening. My voice starts going a little bit on the high side, by degrees, until I sound like a gentleman whose had his gentlemanly bits squished quite comprehensively. Then, something weird happens around my outer eyes – a wibbly wobbly ‘let’s go back in time to when x happened’ situation. And then, I know I’ve got about five minutes to get to a bed or sofa and go splat.

As the cycles have gone on, and I’ve got to know how this temporary me behaves, I’ve organised the day so that I can head the splats off at the pass (well, for the most part – the best laid plans and all that). I wake up very early, so if there’s anything I have to do, such as a hospital appointment (usually between 1-4 per week, sometimes on the same day), a quick Tesco swoop, a spot of garden tidying and so on, I get it done first. Almost without fail, I’ll conk out at midday, at whatever point in the cycle. I’ve made a sign to hang on the front door, which just says Resting, told the postman where to leave stuff if that sign is on; I shut the curtains and go and snore my head off.

For visitors, I’ve had to be rude up front and say that 45 minutes is my max. That’s before they say that to me! I’m hugley boring after 45 seconds, even in non-C word life, lols! Oddly, it’s very tiring talking one to one for a long time, or indeed listening to someone who has quite a lot to say for any abnormal duration. Early in the cycle, 45 minutes really is it. Later, I could do more, and I’ll want to, but if I do, I’ll go splat for the rest of the day. But then I’ve splatted out twice yesterday and today and not seen a soul. Funny, this lark, isn’t it!! I’ve even lol’d in my sleep about it!

I suppose the oddest one of these was after an 8.30am PICC flush. As I may have said before, the hospital is perilously close to my fave garden centre. (Perilously close to our financial ruin, muttered my horticulturally-agnostic carer, one time out of many.)

Peter the PICC was flushed, re-dressed and refreshed by 9.15, and eager to beat off Mrs H and all her gin-soaked pals perusing the Perovskias, I felt a quick visit to the GC was the law. Well, festuca me, as I drew into the car park, I was absolutely over bloody whelmed with tiredness. I could barely navigate the car past all the zimmer-driven oldies pissing their way into the perennials. What to do?

Quick logic check. Both carers are at work and cannot be disturbed. I’m 10 miles from home. My voice is going higher and my eyes have gone wonky. I’m so shagged out I’m looking for a washing line to sleep on. I don’t trust myself to drive.

Yes, I’m going SPLAT, faster than I can work out how to spell it.

One, simple answer. Put the back seats down, crawl in via the boot, shut those wonky eyes and have a damn good snore. Genius! I woke up 45 minutes later, pushed past the pissers and got what I wanted, all with a cheery, ‘good morning!!’ to all I encountered.

There was the other time, when I was getting a bit dizzy doo dah all the time, which I still do. Similar sitch; home alone, conked out in bed, then I need a wee. Off I set along the landing, upright but wobbly. I have terrible vertigo by the way; so I get as far as the stairwell and think, ‘oh FEC.’ I’m wibbling and wobbling; then the practical side kicks in. The only way to get to the loo, and stop changing the colour of the carpet, which could be a new F&B mix (and texture – Parp Splatt, 000) by this stage is to crawl. Yes, actually crawl. Talk about drama daaaaaaarlings – it was epic. Just like Scott of the AntArstic, only more carpet drenching. Bleuchh!

Gosh, I wish Winslet could have been with me then. She knows trauma, that girl. Not everyone survived Titanic with the dignity and the make-up she had.

Hang on a minute though. Wasn’t she the one lying on that old bit of wood (on location in a lido in Antigua with an ice machine blowing?) Didn’t she kick Leo off the inflatable dolphin dressed with a bit of old 2 be 4 in the sale from B&Q that time?

Oh Kate. Please be me. You have it sussed. (Does anyone have her number?)

Pip pip – a huge sorry for the length of this one. It’s been a while, as I’ve not been fab, but I’ve missed you. Yes, Keith, even you xx

 

 

 

 

 

 

 

 

 

 

 

 

Hello, hello! It’s been ages – where have you been??

Ah – sorry – other way round.

I think the best way to explain the absence of my ramblings involves a principle I maintain for my garden: I never plant out my seedlings unless it’s a sunny day. Think how you’d feel if someone hoiked you out of a greenhouse and shoved you into a cold border? I wouldn’t like it – and as my plants are, actually, humans, right, with personalities, periods and feelings and all that, I treat them the same as I would any other friend. (Did I mention I actually think they are my friends? #awks.) Do unto others as you would be done by, praise the Lord and Happy Christmas. Works for me!

This is not to say that I’ve been all Wuthering bloody Heights with dramatic wailing, stumbling and tearing out of what’s left of the hair (ok, a few stumbles – more of that later) all this time. Don’t do an audio conjour-up on my account of Kate Bush (erm…sans surname for some these days!) Oh no.

The surprise return of my No.1 bestie from lots of countries, after six months, has been absolutely monumental for me. Little tinker had led me to believe she was arriving on a certain day, but all along, a date and a plane ticket five days earlier had been in plan. Loads of people were in on it – including the carer – but managed to keep quiet. All I can say is that it was the best, brightest, warmest and most emotional moment I think I have ever had. I keep staring at her and touching her to make sure she’s real. She thinks I’m FECing bonkers and is booking a one-way ticket back to Bali as soon as she can.

Then there was what happened last week. I rest my case.

Also, I’ve been a bit annoyed after Cycle 4, 12 days ago. I have a flexible contract with FEC – it’s set up to do very useful, but sometimes unpleasant things to me; I have resisted well; so much so, I’ve obviously pissed it off and crossed a line – so on Cycle 4, it decided to remind me that ultimately, it is in control. Hence I’ve been feeling rather worse, in new and different ways, for longer, this time. I am having to fit round it, as opposed to vice versa – but that’s fine; no drama, no surprises – we push on through, laughing our pants off, obvs.

Well, one surprise I suppose – this was NOT in the small print I signed up to! I’ve taken to fainting! Ha! I am Kathy after all! I was planting out some perenns the other week and suddenly felt super-dizzy. I was on my own – fine.  I could hear myself saying out loud, ‘woahhhh….this is weird!’ Next minute, face down in the festuca (Elijah Blue, plant fans!) with not a Heathcliffe in sight to snog. Bugger.  Total disorder in the border. Hilarious!

Anyway, it was a really sunny day (obvs – see para 1) so I just lay there for a bit; I almost snoozed actually, as it was so warm (south-facing beds – can’t beat ‘em). I always carry my phone in my back pocket (or…controversially…my BRA!!!!! Rude word!! TITter ye not!) so I texted #1 bestie who was not far away and just asked her to come and look for me in the flower beds when she got home. No problem.  I think I was well back inside making chickpea burgers by the (short) time she arrived. Chickpea burgers, I hear you laugh? Come on guys, these halos don’t polish themselves. Nutrition is key to this whole thing and I am bang on it. Or not; maybe should’ve gone for a bit of wagu, moorhen or lark the night before that episode?

Hmm, what  else. Oh – I’ve felt so pukey. Not actual vomola, but just feeling like I want to a lot of the time. That’s fine – I’ll see Onc next Monday for my prescribing appointment and he’ll just say ‘get over yourself’,  and we’ll continue the same zapping cocktail two days later. I have such a laugh with him – he’s the only bloke in the MDT (multi-disciplinary team) assigned to my case. He’s the token man, the weirdo, the whacky, geeky,  super-intelligent medic who does something completely whacky, geeky and super-intelligent in his spare time.(Not telling you what – I do have doctor confidentiality to think of you know.)  I think most of them do – it’s a stress reliever I guess. I’m going to talk about all the fantastic women who are the pride of my pack another time. In the meantime, let’s hear it for the (medical) girls!

Any country lane up, what with the fainting, near puking and all that on my side, and the fact my carer is on his knees with a very busy workload, and sorting out a certain dependent at home, I have persuaded him to actually take some time off and for us to go on a full-blown, two-centre, four-day, sea and countryside mini-break! I am SOOOOO excited!!!! We’re going THIS WEEK!!!!

We can’t go anywhere for more than two working days at the mo just because I have hospital appointments, in between zappings, one to three times a week. I’ve managed to squidge them up and get a routine one sorted for dawn one day, so that we can head off straight after that, mid-week. No.1 bestie is here with her man to chill out in her home and feed the cats – we’re all set.

Or are we?

Time was, for a romantic mini-break, all you did was throw a negligee (the satin pillowcase purchase has thrown up some whole new ideas into my wardrobe, folks!)  some lippy and a frock into a bag and away you go, just like Bridget Jones on her first weekend mini-break with Daniel. I don’t think my follicles would stand up well to an open top sports car just now but hell, I can wear a scarf with panache.

Also, this is our attempt to replicate our honeymoon, which we spent in Dorset and the IoW. We did the exact same itinerary last year, for year 1, but this time, a zapping is set to disrupt the schedule. So we’ve split it; we’re doing a bit of it this week, and the rest of it just before the actual day, our second wedding anniversary (woo hoo! Must be time for a vow renewal!), because the day after the anniversary, I get zapped for the final time.

I’ve been making lists. LOTS of lists. We haven’t been away together since January (post-diagnosis but pre-nonsense). It’s not reading like the typical contents of a replicate honeymoon suitcase. Thus far, we have:

 

• 12 x 1.5L bottles of Evian (I drink 3L a day, without fail, and have shoved a couple more in for emergency purposes)
• 20 sachets of Move-it-all
• Lots of big, clean pants (see previous bullet)
• Clean satin pillowcases (bleeeucchhh – what will they think when they make the bed up in between days at the hotel? Perv central!)
• Rattly bag of meds to cover all eventualities (see above – so we present as pervs and drugs dealers? We’ll be arrested by day 2!)
• Thermometer (see bracketed comments above) – although it is one you just wave at your face – not a pointy one. Ahem.
• Organic gluten-free oats (obvs)
• Emergency contact card and instruction card to medics in case of neutropenic sepsis episode
• A pair of jeans, a frock, a toothbrush (and that’s the carer’s)
• 653 Freddo bars (obvs).

Not quite the romantic idyll of two years ago is it??

Never mind, we continue, determined, and I absolutely cannot wait to see my carer truly relax and kick back, catch up on sleep, read his weird books and for us to have some lovely coastal and country walks together. He needs and deserves it, big time.

So, little FECer, you may think you’ve got the better of me this time but you know what I say? Babooschka to that.

Pip pip, I’ll send you a postcard J

 

 

 

 

 

It must be Thursday – albeit only just. I never plan a blog post – its timing or its content. It just comes when it wants to, and buggers off in between.  I think about things along the way, store them in the memory bank and then something, just something tiny,  and funny (to me), triggers the whole lot to flood from what’s left of my brain to my fingertips and on to the page. Weirdly, this usually seems to be on a Thursday, or late Wednesday night, as I now write.

So the funny trigger, the hoo hoo cue, the ha ha car, arrived this morning, straight after I’d come from gym circuits (yes, you read that right!) with the Oncology Physio at the hospital. That’s funny enough in itself – me, gyms, circuits – bleeeucccchhh, no thank you! I’d rather watch an episode of Top Gear. Preferably while asleep. Or dead. Yeah, that would make it tolerable.

No, I’ve asked – asked – to do circuits, exactly 7 days after each chemo infusion, because even though I might feel pants, it spurs me on to ensure I start and then continue to exercise well for the rest of the cycle.  Anyway, no hero points due here, I bloody hate it – she makes me do the exercise bike first, which I loathe, and then all sorts of vile, pointless things with weights – but on the plus side, we are making in-roads into Mount Gut, which needs to be done.

I digress. The hospital is close to one of my favourite garden centres/country park/vintage tat/saw you bloody coming, you muppet type places. As it’s relatively early, I decide it’s rude not to pop in after evil, bike-loving Fizz Mistress’s session and see, for one last time (honest) if in a garden centre, I can differentiate between want and need.

I’m perusing the perennials, when a friendly assistant approaches. “Hello, you alright there?” (Note to the world, and people who kindly work in shops – PLEASE do NOT keep using this phrase as your opening gambit. It makes the customer feel like an idiot. Yes I will be alright, when you keep your half of the bargain and consider interacting with me along the agreed t’s and c’s of our supplier/consumer relationship. The phrase is, “Can I help you?”. End of.)

Think I’m a bit touchy tonight? You just wait!!!

“Yes, just having a look to see what you’ve got in, always on the hunt for more plants!”

Her mouth has dropped, and her eyes have gone north.

“Yes, terrible when you’ve got a bald patch to fill!”

I am smiling because I know what is happening. Meanwhile, she is busy burying herself backwards in the begonias. And deeper with every word. She continues.

“Errmm…anything in particular you need? Is it really bare or just a bit patchy?”

I kid you not, this is exactly what happened: please know this, every word of every blog I post is 100% true – all of it actually happened. If it didn’t happen, or you can’t hear me in these words, it’s not authentic, and if it’s not authentic, it’s not being written.

“No I’m fine thanks, don’t worry!” and off I go, smiling my gym pants off. (Oooh, fashion update: I got some flashy new cut-off gym trouser thingies and matching top from Tesc….er, design duo Florence and Fred, for Fizz. Yeah, all the gear, no idea! They are quite bright. Carer’s reaction first thing? “Blimey, the neon goddess has arrived!” followed by “Nice arse!” I love the bones and the skin off that man.)

Well at last, say I! I was told from the outset that even with the cold cap, I would lose 30-50% of the hair on my head. Without the cold cap, I would have lost all of it by cycle 2 – it’s not an ‘if’ or ‘maybe’ with my chemo cocktail. I’ve been quite excited to see that it’s happening – not least because, (upside time, taaa daahhh!), if FEC is making my hair fall out, even with the cap on, think what havoc it’s wreaking on the other stuff. It means the treatment is working. Happy days!

The hair issue has, as ever, been hilarious from day 1. We were just finishing the first cycle, (see angle poise days, the blog title I can’t remember), and as the delicate, first frost on an autumn puddle type ice sheets were sliding off my head when the cap came off, Head Onc Nurse was briefing us on what to do to minimise hair loss.

“Try not to wash your hair too often lovely,” she said, ever so gently. “But when you do, use a PH-neutral shampoo and conditioner. Run the shower water as cold as you can take it. I’m afraid you can’t rub the shampoo in, just pat it on. Then, when you come out of the shower, you have to let it drip dry. No towels. No blow drying, or any products on the hair. Try not to comb it.”

My hair has never been my crowning glory. There’s lots of it, but it’s as fine as you like. So, without products, blow-drying or even a decent, scalp-tingling wash, it looks like poo. The net is, I don’t give a flying FEC about my hair – which may beg the question over why I had the cold cap.

Well, it’s quite simple. I think I might have a bloody horrible head under all that thin, pointless stuff. I mean, what if it’s Tefal-like, or covered in scabs and moles and rats and purple sprouting broccoli?? How do any of us know (unless you’re a bloke, obvs – hahahahha!)? Oh, and the other reason I had the cap is that Consultant Onc just told me I would be having it. I don’t argue with him!

Head Onc Nurse continued. “You’d be best to change your pillowcases. Cotton pillowcases draw out the moisture from your hair, and as you turn in the night, you’ll rub the hair off like a new-born does. There’s too much friction.”

FECing hell, what am I meant to do, go pillow-less??? Sleep on cling film??

“Satin pillowcases are the best.”

Excuse me?? SATIN pillowcases?? I am filled with horror. I haven’t heard of such things since I had a random accident with a Jackie Collins ‘novel’ when I was 16. (Lady readers: don’t be sat there pretending you haven’t done the same. No – YOU!  Shaking your head there – you HAVE. I know you have. Own it.)

Oh great. So I’ve got to go from 400 thread-count to 400 volts of static. Bring it on.

Once home, I venture (embarrassed) on to Amazon. Short of visiting Hugh Heffner’s gaff, I cannot think where on earth I could procure such items. My fingers are typing ‘satin pillowcases’ into the search box, but my whole head has made like an owl and turned the other way.

I find some. White, at least. Urgh. I can barely look. But they are needed, so into my basket they go.

What happens next? O….M….G

“Customers who bought this also viewed…”

NO THANK YOU! NOTHING TO SEE HERE! MOVE ALONG!

So, all that being covered, we’re on course. The day of cycle 2, I’m gently combing my hair, with a device that has teeth wider apart than the tines of a potato lifting fork (or Phyllis Nelson, if you’re of an age younger than the one which knows what tines are) and wallop – a great big chunkola of hair just comes out. No problem. In between cycle 2 and 3, it’s just dropping on the floor, combs or not. It’s highly addictive: I reckon I could stroke the whole lot out over three episodes of Escape to the Country and be done with it.

I am fine with all this, and if you know me, you know that’s true. It’s just a tiny bit galling that every day, strangers are literally stopping in the street to take pictures of my next door neighbour’s luxuriant bush. Referee! But to be fair, I’ve never seen her Wisteria look better in the seven years we’ve been here.

I’m not the only one losing it. The cats are busy moulting and it’s a right job to tell who’s hair is which. Karen we can be sure of – pure black. Willy (her real name is Tilly but she’s morphed into Willy or Willers) is tabby, but then so am I at the moment – no highlights since January!  Anyway – all hair, feline or otherwise, is being collected up and put into my compost heap.

Now then readers, as you know, the head is not the only place one has hair. As I only have protection against hair loss on my heeeeeed, obvs, everything else is, well, different.

I liken the current situation to the Shipping Forecast. I’m a BBC R4 addict, so it seems natural enough.

As of tonight, we’ll summarise thus:

• Extreme South (Legs, Upper, Lower) Bald as a coot, not changing, waxing savings growing
• Mid-South (none of your beeswax you filth-brainers)
• Mid to upper South – Forearms – Hursuit, hoping for change to bald asap
• North – Face – Full beard (only joking!!!!)
• North – Chin – Granny hairs which need plucking from time to time – sporadic – hoping for change to bald asap
• Eyebrows – waning – could do with that anyway
• Eyelashes – waning – don’t want those to go – only decent thing I’ve got
• Extreme North – Head – Patchy – Fair to muddling – to thinning – to disappearing

Oh! I’ve left a region out. I never knew I had nose hair until I didn’t have it. That’s because now, my nose runs all the time. No, not full-on, green snotty, crusty baby bogies (bleeuuchhhh! Mums out there, chip them off your bubbas, they’re disgusting!) Just a steady stream of running watery-type stuff. Apparently, your nose hairs hold that lot back. Who knew?!

Funnily, a friend recently asked why hair has departed from other places. It’s purely because my head is the ONLY thing which is protected (or semi) from that situation. I can’t be wearing a cold cap body suit can I love!

So back to this morning – bald patches, begonias and all that. At the weekend, I posted a pic on FB of me in a hat. I don’t like hats – I didn’t own one before this, and I look shite in them. But I’ll wear one for social occasions just because, it’s easier for other people. I wish for that poor girl’s sake this morning that I’d had one on. We all get ‘bad news Tourettes’ – I’ve had it myself in the past.  It’s human nature.

In fact, while I’ve got you,  the whole CA/CHEM thing is harder for the people who haven’t got it/are not having it, than it is for the person experiencing it, and I genuinely mean that. I’ll blog about it in the future, if you tell me that would be useful, because now I know far better how to have a conversation when someone’s dropped the C-bomb. I wish I had known before.

In the meantime, you’ll find me at home or out and about, quite happily baring the bald, the bare or the patchy – who bloody cares? I’ve nailed the Rab C Nesbitt comb-over, and if you look, or want to see, I will show you.  If you try to sneak a look, I will charge you!

Shipping Forecast update, 00.01, Thursday 4th May:

Hair: Thinning, patchy, variable; bald in parts; not bothered

Self: Happy, loved, grateful; blessed indeed 🙂

Pip pip x 🙂

 

 

 

Happy Thursday everyone! Hope you’re bearing up, as the end of the four-day week, which usually feels twice as long, is coming into plain sight?

Isn’t the Easter bank holiday the best ever of the whole year? Four full days of relaxation, time with friends, good weather, plenty of yummy food, drink, biscuits, cake, tons of chocolate eggs….

Errrrrrrrrrrrcccch goes the needle scratching across the record (ask your parents, kids).

Biscuits? Cake? Easter Eggs? Fat (and I mean positively portly) chance of that this end.

Side effects are kicking in big time this cycle, and a new one has come upon me. As hard as I try to resist, it’s growing on me. No, it really is.

I became aware of it at the regular prescribing appointment with Consultant Onc just prior to my last cycle, two weeks ago. This is where he wants to know how I have been over the first 21 days, what symptoms or side effects I have had, and therefore, if there is any need to tweak the FEC dose and other meds for the next cycle, which is due later that week. There we were, shooting the breeze about bowels, movements, baked bean cream and other hilarious matters, and he asked me if I had any further concerns.

I might as well go for it. “Just one. I’m eating really healthily, not drinking alcohol, exercising four or five times a week – but I seem to be putting on weight, or rather, not losing any.”

“Ohhhhh! I forgot to tell you last time,” he said, over his glasses. “Your chemotherapy makes you gain weight.  Very common.”

You ‘forgot’ to tell me. YOU FORGOT??? Well cheers for that, Doc.

“In your case, you will only drop weight on chemo if you start vomiting, feel really nauseous, or lose your appetite – but we control that with medication, and I’ve given you very good drugs. You haven’t had those symptoms yet, have you?

As I shift in my chair to get more comfortable, my stomach puts its head, arms, legs and its own bloody stomach on to his desk, lays down and spreads itself out, gurgling contentedly. A complementary parp pops out for good measure. The question is rhetorical. The answer is unpacking itself before his very eyes.

“Hahaha – so I lose my hair and gain weight! Can’t I have option B, you know, the one that works the other way round?  Hahahaha ….ha? Please? “

He looks at me like I’m a small child convinced I’m getting a trip to Disney for my birthday when he knows full well there’s a week at Butlins all booked and paid for, and he’s about to hand me the envelope containing the tickets.

“No.  If it bothers you, just be sensible about what you eat.”

Sensible?????

In the last five weeks, I couldn’t have been MORE sensible. Let me elaborate. (I was going to say ‘expand’, but I think I’ve done quite enough of that.)

Between diagnosis and surgery, I had a weird and uncharacteristic cavort with fish fingers, pizza and Cadbury’s Freddo bars. (OK – time to fess up – the Freddo part is not uncharacteristic.) This did not go unnoticed on the scales, so straight after my surgery, I decided to sort myself out. About a week later, following some test results on Terry the (now homeless) tumour, I found out that instead of going straight to radiotherapy, chemo was to be the first stop.

I didn’t really know anything about chemo then, other than that the general consensus is that it’s not as nice a treatment as, say, a hot stone massage. So, I decided to knuckle down and get myself as fit and healthy as possible before it began.  I managed to get the moth family out of the cobwebs on the Nutribullet; the Dominos loyalty card got ripped up, Captain Birdseye took a dive to the watery deep and the Freddos hopped off. The exercise stepped up and the poundage dropped back to normal. I was ready.

After cycle 1 (specifically, the day I turned yellow), it dawned on me that I might need to do more – not so much for weight management, as I was now fine – but in order to equip myself properly for the tonking which chemo gives your system. My pagan thinking went roughly like this (here comes the layman’s science!):

Your liver is your basic powerhouse – it’s forgiving, but only to a point. God knows I’ve put the poor sod through enough since it came off formula 48 years ago, so now is as good a time as any to give it some TLC. Also, your immune system is going to be in big trouble, as the job of chemo is to kill not only any residual cancer cells (a very dear and spectacular friend described FEC as ‘the Domestos of cancer’, which I told her I’d nick for this blog – thanks P!), but any other useful, fast-dividing cells you possess. High up on that list – sitting next to hair follicles – are your white blood cells, which form the core of your immune system. Hence the measures you have to take to stop getting any kind of infection while having chemo – your immune system gets flattened, and you have no means to fight back. It can mean ‘thank you and good night!’ for the patient. I signed a form saying I understood that bit. (The same form that had the bit about weight gain accidentally Tippexed out.)

So anyway, cut to the chase – I go off and research foods that are good for liver health and for boosting the immune system, buy them, and eat shedloads of them. I dump or restrict things that aren’t (Malbec, red meat and I had a very tearful parting, knowing we’d only meet infrequently over the five months to come) – and stick to it.

Well get your sunglasses out why don’t you, because the light from my halo is about to blind you! Easy peasy, unwaxed lemon squeezy – there’s not a vegetable, grain, pulse or plant protein I don’t love. I check out my approach with my lovely GP and she declares me to be ‘incredibly sensible’, which is as much of a shock to her as it is a moment of pride to me.

So I’m stuck to my wonder regime, deriving immense gratitude at the sound of ‘kerching!’ every time another devoured portion of kale or quinoa racks up my clean eating tally. I’m exercising throughout the 21-day cycle (apart from on the really pants days). OK, despite all this leafy healthy stuff, I’m still utterly dependent on Move-it-All to shift the lot out, and I’m not the most fragrant person on the planet right now but who cares? I’m glowing (that might be the FEC, thinking about it…) – I’m reinvented, I’m Deliciously bloody Smella!

That’s not to say a few mishaps haven’t occurred. Oh no. The other week, I broke the cardinal rule of dieting. I went to Tesco while I was hungry. Oh dear oh dear oh dear. Skulking under the Gluten Free Organic North African Bark Scrapings (lovely in a stir fry!) and the Free Range Grass Fed Grass Clippings (try them as a micro-green scatter over the tofu timbale for that cheffy touch at dinner parties!) somebody (ahem) has pushed in ten slices of corned beef from the deli counter, and four fresh cream éclairs. (89p for two; £1 for four. No FECing brainer). After the five-minute drive home, somebody (double ahem) seems to have stolen them.

But that aside, for someone whose usual approach to dietary regimes is to buy the book/blender/juicer then sit back with an almond Magnum declaring the diet complete, I am doing super-well.

The scales, however, have a different view. Three or four pounds WENT ON between the first and second cycles. I chucked those out as they were obviously faulty or the battery was flat – but strangely, the new ones say the same. Drat.

And the other, very weird thing. The weight is re-distributing itself around my frame. Creepy, eh? One morning, I just about caught my wedding ring as it slipped over my knuckle. Now, dear friends, I know where it was heading.

Yes readers, the hottest place in town is currently my stomach. It’s as though it’s grown two fat fingers which have poked out to whistle to the rest of me. “Oi! You lot! All her flubby bits! Come on over – the party’s at my place” and then been sucked back in to the lardy depths by a bacon double cheeseburger.  Not all of the flubbers were listening; there’s still a fairly well-populated gathering (pre-drinks?) going on around the thigh and backside area..but for the most part, they’re getting settled in around my middle. Oh joy.

There’s a little fly in the chemo ointment which is not 100% responsible, but certainly being super-helpful, in developing this new conurbation. Steroids. (Not to be confused with Asteroids – I’ve already got those!) I get them intravenously on infusion day; then three days’ worth in my goodie bag to take home.

They’re there for a good reason – anti-sickness booster, anti-fatigue and, an appetite stimulant. Suffice to say, they are very good at all three of their jobs – but boy, do I wish they’d take early retirement.

They know very well what they are up to. Every time I pop them out the packet I can hear them, chanting:

“We’re gonna make you fa-at, we’re gonna make you fa-at-….hahhahahaha!!! …Eat me! Eat me! You know you’ve got to!”.

Evil little shits. Well, I call them that, but they also contribute to my constipation. Hmm.

Not only that, they give me a massive face, which is not a great look on someone who already has a massive face. I swear, if Tim Peake dropped round mine on day 4 of a cycle, he’d be doing a double take and having an epic attack of déjà vu.

What’s a girl to do? Well, just go with the flub…er, flow.

It is what it is – and the upside is, I’m far luckier to have this than the opposite, which would make the whole shebang so much harder to deal with. I’ve seen others on the ward who are so weak from sickness they are really, really struggling. As ever, I seem to be getting a very decent hand from a challenging deal.

Nonetheless, I’m staying vigilant – it would be remiss of me to add voluntary obesity to my current list of complaints, after all!

So no, I did not indulge in plenty of yummy food, drink, biscuits, cake, and tons of chocolate eggs over Easter.

Am I bitter? No chance. I can’t even do 10% cocoa solids at the moment, let alone 70, as regular readers well know!

Now pass me my chia seed and organic dandelion porridge, while you look up where the nearest branch of Evans is for me please.

Pip pip for now 🙂

Well a very good Sunday morning to you all. Are we all ready with our barbecues and flip flops, set to embrace today’s promised heatwave?  I can’t wait for the sunshine to come – I’m on it.

T-shirt, summer jeans, sun cream  – they’re all laid out and ready to go. Quick watch check. Hmm. It’s 5am. Over-keen? I’m not quite used to it yet, but 5am is my new, natural wake up time. It’s lovely actually – and one of the things I add to the burgeoning list of upsides I experience, or, elements of really good fortune in what could be seen as a relatively duff situation. I’m having this treatment in spring/summer. Great! I can lie in bed and listen to the birds waking up with me, watch the night sky fade to pale, and wait for the sun to come. Hurrah!

It’s four days since the last FEC-fest (Cycle 2, Day 1). The days since have been a little trickier to navigate than the equivalents in the previous cycle, but that, I was told, is to be expected. Over four months my system will be regularly topped up with glorious toxic goodies, and the effect on the body is, naturally, cumulative. Other side effects have started to embed – more on that another time. No matter – we’re just going with the flow – all is absolutely FINE.

My session was a morning one last week – it was to be a sprightly 10am start. We’re a little more prepared, in that, I’ve added a scarf and puffa jacket to my bag to combat the effects of the angle-poise cold cap (it’s a glorious sunny day, but minus 20 degrees on your head is minus 20 – and we were minus the proper body warming aids last time). I’ve also decided to spend the 6 hours on the bed rather than in ‘the chair’. This was because I got pretty spaced out and sleepy the first time, and frankly, with all that kit on your head and face, and my naturally gesticulating arms pinned down with lines and wires, conversation options are pretty limited.

In I snuggle. My carer takes his place in a chair (not ‘the chair’ – he won’t even take a paracetamol, so expecting him to do empathetic FEC with me doesn’t seem very likely). Again, for the upside/good fortune list, we’re lucky that he can be with me and still work – so he’s all settled, laptop whirring, list of conference calls ready that he can just duck out and do. We’re good.

Step one is to take an anti-sickness pre-med, after which we need to wait an hour for the main FEC infusion to start pumping intravenously. It’s the only oral medication I have to take on hospital day (aside from random pain relief if needed) but by god, it’s enormous – a whacking great horse pill. The carer says I look like a contestant on I’m a Celebrity doing the Bush Tucker Trial getting this thing to go in, and stay in, so between the gagging, heaving and regurgitating, we’re up to 10/10 on the laughter front in no time.

Once we’ve established that the tablet is staying put, there’s still time to kill, so I flip the TV on. Beaming Philip and Holly appear. A low but audible tut escapes from the carer’s lips and he shuffles his chair away from any risk of seeing the TV screen – but he’s back into his Excel like a rat up a drainpipe and well, we’re happy.

Philip and Holly are trilling away about what’s coming up on today’s show (can’t wait for the bit on how to make healthy chicken nuggets using ground red lentils in place of breadcrumbs – bleeeuuuchh!). Gradually, I notice the clunk of a faulty trolley castor, making its way down the corridor. This place is trolley-central – like Tesco on a Saturday – hundreds of them, fully-loaded, missioned in different directions. But this one is different….because as it gets closer, it’s releasing essential oils and it seems to be singing. This can only mean one thing. “Good morrrrrning darling!!!”

Carer throws his laptop on the floor, glues himself to the TV and starts taking notes from Holly about how many lentils to bung in the food processor. He’s not risking it this time.

“Remember me???” says Marion, as beautifully coiffed and faultlessly feline as last time.

“150g seems a like a lot”, mutters carer at the telly.

“What are we having today darling?” purrs M.

Well, I had thought about this in advance. Someone had suggested that a spot of reflexology would make a relaxing start to proceedings, and I know it’s on Marion’s list of delights. I suggest it.

The cat eyes lower.

“We can’t darling. Remember! Today, WE are INFUSING!!!”

We, I think? Oh no Marion, please – don’t tell me you’ve got it as well you poor cow, and you’re working; are you porting your own FEC around the place, rigged up to you underneath that pile of whale music CDs and putting on a cheery face while you treat others? Honestly, the bravery of some people.

“When we are INFUSING darling, we need to keep the pathways clear. Reflexology may interfere with your pathways. How about a light foot massage?” I decide to have a think about it and let her know later. She’s gone in a whoosh of lavender, off to infuse somebody else.

The next clunk, or clunks rather, are the trolleys bringing in the angle poise, the drip stand and the machines; it’s time to get going.

I get rigged up with the cap (funny: doesn’t seem to have got any warmer since last time?? And has it shrunk in the wash?), and hooked up to the machines via my PICC. For the first time, I see the tray of syringes containing the saline, the three pre-meds, then the F, the E and the C, which get fed into me in sequence via the drip over the hours to come. It’s because I have changed position – from bed height, I can see more. I consider the wisdom of this for future sessions.

Off we go and it’s fairly uneventful. Each infusion is loaded in turn; a timer is set; the nurse goes away and comes back when I start beeping, to load the next one.

Now, I know it’s a while since my writings on Parp Gate, but please do not think such matters have dispersed (would that they had!). Move-it-All is still very much doing its thing.

That, coupled with a diligent intake of 3 litres of water a day (plus a pint of Lavazza that morning prior to arrival) mean that being pinned to a bed attached to things is slightly limiting when nature calls…which she does, an awful lot these days. If I want to go to the loo, I need help – and I have to get the timing right. I can drag my drip stand in with me – it comes in like a faithful dog to heel, the machines switched to battery mode so FEC can keep on FECcing. But with the cap – well – there is a time limit. The nurse has to disconnect the head pipe from its power source at the wall so you wobble off like a discombobulated Telly Tubby (La La my arse! I’m much more Po lately!), rubber tubes flapping from the top of the scrum cap. You can only have up to ten minutes off power – otherwise the cold won’t hold in the cap – and the follicles will start to give in.

It’s an operation run with military precision. I assess the optimum time for the visit (the point where I am utterly convinced all procedures will be executed); let the nurse know ‘it’s time’; and away we go. First step, still fully attached: get myself into a standing position and face the direction of the bathroom. The door is opened for me, the light is on. The anticipation is building – I’m like One for Arthur, skittish on the blocks at Aintree, eager to get off and away. Next: switch the FEC dispenser to battery mode and free up the drip stand. Done. Finally – disconnect the cold cap from the power source and put the stopwatch on. I’m off! Hysteria doesn’t even come close – I’m humming old Benny Hill tunes out loud as a pace setter as I leg it into the loo, get the various deeds done, anti-bac myself up and peg it back to base to get re-connected. We have to do this about four times during these sessions – I plan to make an Olympic sport of it. Watch out Beijing, here I come.

Soon, lunch arrives. On this day only each cycle, I’ve told myself I can have whatever I want to eat, regardless of how good or bad it is for me. Goodbye kale, hello lard! I did toy with the idea of a spinach and tuna salad but the beef stroganoff and fruit crumble with ice-cream slightly nudged it. Having scoffed the lot (it takes time, which is annoying; the tightness of the scrum cap’s chin strap limits your jaw movement), I lay back for a snooze under my puffa jacket and some extra blankets which have been kindly delivered.

Alas, Move-it-All waits for no man. As I doze off, I’m vaguely aware that the carer has opened the window wide, and in fact, all doors and windows in the immediate vicinity have either been set, or possibly blasted, free. Oh dear.

My machine starts beeping and in rushes Nurse R, who is about my daughter’s age, and with whom I always have a good laugh. As with Parp Gate #1, I decide to head the awkward convo off at the pass.

“Does it smell a bit?” I venture, knowing the answer full well.

“Well, um, there is a sort of smell I suppose,” says R, very professionally.

“Smell?” says the carer, lifting his head from the laptop. “It’s like a bloody sewage plant in here!”

Then, of course, we’re all laughing our heads off, crying in fact, R trying to remain professional and us telling her not to worry about it. She’s still laughing as she heads off down the corridor, and I’m very glad she is – unless she’s heading to the nurses’ station with a resignation letter, that is.

The day is drawing to a close. It’s been busy on the ward – too few nurses for the number of patients, rushing around with trolleys to make sure each person gets what they need, and when. They are amazing.

We all have different infusion lengths as we’re not all having the same chemo for the same cancer, but today, it seems that we’re all due to finish at roughly the same time. Final machine beeps start pinging in every direction; it’s a like a hundred kitchen timers all going off at once. So either I’m in the final of Masterchef or we’ve all opted to be soft-boiled, and we’re ready to come out.  My final beep is definitely my favourite, as it heralds the removal of the cold cap, which you keep on for a further 90 minutes after the infusion. We’ve played the ‘guess how long now’ game, and I must say, this time, it has been pretty uncomfortable so the moment cannot come too soon. Oh for those warm head towels! I can hardly wait. We’ve even managed to get to the second of the afternoon’s Escape the Countrys, but today, the novelty had definitely worn off.

Trouble is, with so many in, it cannot work that way, and that is fine. It’s a priority thing, and I’m often (gratefully) on the top of that list. It’s another 20 minutes before someone can come and take the cap off, which is a short time in the scheme of things. The moment comes, the warm towels are on, and I am in heaven.

And with that complete, look at the other, pretty major upside? That’s two cycles down now, which means only four to go – this is easy peasy, and I really do mean that.

Back at home, I’m straight to bed. Not wanting to squander a moment of the ‘you can have whatever you want to eat on this day only in the cycle’ day,  my carer brings me baked crinkly oven chips covered in grated extra mature cheddar, with vinegar and tomato ketchup. The whole lot disappears and I’m into the land of nod, doubtless gassing the place out.

The kale can wait ‘til tomorrow.

Enjoy the beautiful sunshine all – it’s going to be a fantastic day. Pip pip (beep beep) for now.  J

 

Oh readers. I feel the need to share, even just to sense your empathy from across the interweb. I absolutely know you’ve experienced what I’m about to talk about, regardless of whether or not you’ve had, or are having, chemotherapy.

It’s a bit sooner than I planned to post again, so apols for that. It’s just I’ve been laughing my head off allllll day (again). What am I like, LOL! (FB sub-menu, the easy one).

When you’re having chemo, very quickly, you no longer think of days as dates or actual names of days of the week [as usual, I must stress, this is only medically accurate for me]. So, the day of your first infusion (when you first go ‘in’ to have ‘it’) is called Cycle 1 (C1), day 1 (D1). I have six cycles to do (pretty interesting – I hate bikes), and the cycle (bloody bike again) is 21 days. So – one day in, 20 days to get over it, then back I go for C2, and we re-set the clock to C2, D1. You with me?

Let’s step back. Prior to C1, D1, I went in to see my Consultant Oncologist (can we say CO from now?) It is called the prescribing appointment, and you (well, I) have to do it two days in advance of going ‘in’ and having ‘it’ – every time. So there we are, 2 days BC. (I’m saying Before Chemo; sorry if me and the carer are offending a pretty major religion, of which I’m a part, but I’m on an acronym frenzy or I’ll get RSI and you’ll get very bored.)

CO, who is totally brilliant, is talking to us about my prescription ( – the FEC which is to come).  I, or my carer, have to sign a consent form. He reads out the list of things, by law, he needs to warn me of.

“I need to make you aware that your chemotherapy prescription puts you at risk of:  heart attack, pulmonary embolism, paralysis, total hair loss, heart failure, DVT, pleurisy (had that Prof, boom!), stroke and death. 17 years doing it, and I’ve only lost two so far.”

Well, it’s all I can do to restrain myself – I’m all for launching myself prostrate across his desk, grabbing his Bic and saying, ‘sign me up now Doc!!!’. Soon to be carer holds me back. There’s more. I can barely wait.

“You will either get constipation or diarrhoea. It’s most likely to be the former, So even though we haven’t started yet, I’m going to add Movicol… orrrrr…hahahahahhaha…..ha ha, ha, ha……HA HA HA HA!!!…as I like to call it….”  He’s warming so far to his clearly very well-practised theme, I am can feel direct heat radiating from him; he’s bloody apoplectic. I feel like buzzing for Marion and her hot towel and whale music – where the hell is she at 8pm on a Monday?

This is all building up to…

”Move-it-All!!!! – haha haha haha haha haha haha haha haha”

 

…………….Tumbleweed……………….

[feel the whistle of the wind]

 

I sign the form and we go home. God knows where he ended up.

So we get to C1 D2 (or maybe D3, 4, 5, 6 – that bit was and is still, very foggy). I’m taking the comedy laxative among the other bits I have to take, but other stuff (the stuff you hear about with us Chemoids) is happening so we (me and him) don’t really bother about it too much. But for the record, CO was spot on.

I’m so, so lucky to have my number 1 bestie, who is abroad just now, and great girlfriends – all of whom support me (especially the one in another country) every single day. I cannot imagine doing this without them.

On D7 (two days after [literally] bleedin’ PICC drama – see last post), I feel ready for a light walk.  Off I go, with two of the girls, for a quick 20 mins. I’m tempted to do more (even though I have to sit down mid-way and frankly, I look like I passed away several weeks ago) – but I opt for the sensible and walk home with just one of them.

We’re nearly home, chattering away, and then, out of me, with no warning whatsoever, comes a very distinctive:

Parp

There’s a silence

I wonder if she heard it says a voice inside me. Can I pass it off as something else? I look downwards, and slyly sideways,  to see if she’s noticed. She did, but was being polite, think I. I have to fess up.

 

“Oh gosh, I am so sorry!” I bluster; “I can’t help it, it’s the bloody laxatives!” We collapse into giggles, and all is well. So, I can Lady Puff in front of my friends: this is good.

Not quite so good as the Ds go on – but as always, there’s a funny side.

One of the sides, what with me taking laxatives and all, is that things can get a bit uncomfortable in the South. Plus, drinking a minimum of 3L of water a day makes me jolly glad we got our bathroom done pre-FEC (albeit just post surgery/recovery from aforesaid, which was not the best timing ever). So, readers, add up intensive laxatives + FEC’s resistance to allow all things to pass, plus needing to pee every 30 mins or so.  We’re talking baked beans, and not of Heinz’ original 57, popping out from secret places.

Ever cheery, I realise I need to get this sorted. Off I trot to our local WonderDrug (other high street chemist-type shops are available). It’s quite quiet, so I pick up some random items on special to try to appear normal (face wipes – 99p; cotton make up remover pads – 99p; they’re straight in the basket). Off I go to find the THING that I need.

Well FEC me – I’m searching high and low for it in exactly where I think it should be – in with the old digestive, IBS, Immodium type stuff. Can I find it? Needle, haystack – you know the story.

A friendly assistant is nearby. As, so it seems, suddenly, is the entire population of our very small community (word must have spread about the face wipe offer).

“Ooooh baaaybes! You looks [this is the dialect in WonderDrug] a bit lost! Can I help you ?”

“I was looking for the …..some……you know….Hhhhhhnnn-you-THol…”

“What baaaybes?”

“ Hhhhhhnnn-you-Thol.  I’th not for me, it’th for….” (wondering who I could assign the ailment to).

“You want ANUSOL?”, she shouts.

I’m busy burying myself in the promo L’Oreal Elvive stand because the whole shop has come to a standstill, taking a minute’s silence for my poor, sore arse.

As she reaches for it from the place she’s obviously hidden it FROM PUBLIC VIEW, ON PURPOSE, she smiles “Of course baaaaybes. Here you go”.  All that, with a fake, benevolent smile. I wanted to punch the face off her. I didn’t. I just parped my way home, proud at every puff.

I must tell CO on Monday, at my next prescribing appointment, two days in advance of C2, D1.

I don’t think he goes to WonderDrug. They don’t do Move-It-All there.

Pip pip for now.