Reality bites

I breezed through my first chemotherapy day last Thursday. Came back from 11 hours at the hospital and four different drips (herceptin, then pertuzemab, then carboplatin chemo and then doxetaxol chemo) feeling absolutely fine. A bit tired as I hadn’t slept the night before (rehearsing the day, you know how it is when you’ve got something biggish coming up), but otherwise, feeling rather proud of myself.

The night before, DH presented me with my Team Pinchy t-shirt that he got my lovely aunt and uncle to print for me. I wore it all day and the nurses loved it. (We’re doing some more, £10 each with all proceeds to the amazing Fountain Centre complementary cancer care unit at the Royal Surrey County Hospital, so let me know if you’d like one.) Mummy was with me all day, and I was so well looked after by my own lovely research nurse Celia. She was a complete legend – kind, gentle, funny, and smart, and hugely reassuring.

The worse bit was the cold cap to try and prevent my hair falling out too much. That was fricking cold – a -5.5 degress bright pink cycling helmet hooked up to a cooler to keep the temperature constant for more than three hours. The first half hour was almost unbearable, after that I sort of forgot about it, though picking ice out of my hair at the end of the day reminded me of going face down into a snow drift in Val d’Isere.

But today is Day 5, if we count Chemo Day as Day 1, and it has to be said, I feel like crap. The euphoria of finally starting treatment and it being absolutely tolerable on the day rapidly dissipated when the side effects started coming, thick and fast, on Friday. Nausea? Check – and the anti-emetics made me feel how I imagine a heroin addict feels going cold turkey, like I wanted to crawl out of my own shaky, twitchy skin. I didn’t know what to do with myself, it was the weirdest feeling. Sore mouth? Check – chemo blasts the cells in your body that replicate themselves most quickly (hence hair loss), including all your mucous membranes, so the inside of my lips, mouth and throat feel like when you really burn your mouth and then have that horrible taste for days because it’s full of dying cells. Everything tastes disgusting. I get hungry but don’t fancy anything. Ice helps, a bit. Manuka honey, too (trust me to need the pricey stuff – a girl’s got standards to keep up!). I keep getting weird little aches and shooting pains in random bits of my body.

I’m beyond tired – proper feet-not-working fatigue. My wonderful M&D took the kiddies back to their place on Friday afternoon (described by my 4yo DD as a ‘mini-break’ !?). DH made me a day bed on the sofa and for the first time ever, other than a week or so after each of the babies were born, I have been forced to accept that I have to rest.  This is Brand New for me. As a freelancer, I didn’t even have maternity leave with either of them, cracking on with writing and editing and cleaning during their naps. I don’t find it easy to stop, sit down, relax, do nothing. I am always busy. There is always something to do in the house, for the kids, for other people, for my clients. But now I really have no choice but to do bugger all.

Also for the first time, I am starting to willingly accept help instead of my usual refrains of ‘It’s ok, I’ll do it, no thank you, I’m fine’. Some of S’s delicious homemade butternut squash soup? Yes please. DH cleaning the bathrooms, hoovering and doing the cooking? Yes please. Pops doing the ironing? Yes please. Lovely school mum friends popping into Sainsbury’s for bog roll and making us a lasagne? Yes please. I am learning to accept, with grace and gratefully, any and all offers of help and support.

I’m not used to this, at all, but maybe it’s one of my big lessons from this whole caaancer thing. I’m not alone. I don’t have to do everything myself. I don’t have to be superwoman. I don’t have to cope. There’s being capable and Just Buggering On (all good things in my view) and there’s being stubborn, anally perfectionist, and martyr-ish. One of the promises I’m making to myself, my family and my friends right now is that there will be a lot less of the Resentful Saint about Pinchy from now on. Which I’m sure will be a blessed relief for you all.

Right, I’m off to read some chick lit in front of the telly and try to ignore my mouth ulcers. Amen.

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10 thoughts on “Reality bites

  1. julesey10 says:

    You’re my hero. So proud of you for getting through friday and the last few days with grace, dignity and a great sense of humour. You’re a true inspiration. xxxx

  2. Yes you are an inspiration. Hear hear to all the above. Hail Maja, oh awesome one!

    I hate it that you are suffering. Hate it. Makes me mad.

    BUT so glad “Dorothy”, that you are taking your ruby shoes off , to allow your feet to be massaged before you get back on that yellow brick road.

    Count me in for a Team Pinchy T Shirt please. I’ll run with it!

    On a practical note, does bonjella work for the mouth ulcers at all? I know it helps me when I have the occasional one but as I’ve never experienced what you are experiencing, I don’t know. But thought I’d mention, just in case it’s worth a try (I like the taste of it if nothing else!)

  3. Natalie says:

    Hey lovely! I hate the fact that you are so poorly but STILL you make me laugh and cry all at once. You are indeed one amazingly spirited lady and I am soooooooooo proud to be able to call you my friend.

    Consider meals on wheels in motion….
    Love you
    xx

  4. Sarajane Marchant says:

    Hi there, one of the lessons I have learned over the past couple of months is to accept help gracefully, bit long in the tooth, but finally learned……..
    Totally agree, how can you write so well, when feeling less than great, soo jealous!!

    Definitely put me down for a tee shirt, would love to be able to wear it when I go too!!

    Here’s to you feeling better very soon xxxx

  5. I’m guessing you must live relatively close to me, if your hospital of choice for the proceeds of tshirt sales is anything to go by. Learning to rest is hard. I’m a constant go go go person but when anaemia strikes me down as it often does I very unwillingly rest. Its not easy, sudoku often helps me if my mind is still going but my body isnt. Wishing you the Best of luck!

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