Alice… what's the matter?

breast cancer blogger

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Introvert. Online waffler. Breast cancer fighter. Dreamer. Maybe a writer, one day…

  • I want a dog

    Ah… Now *this* is what I was expecting to feel like 6 weeks ago! At least I dodged it for the first 2! 😦

    Headache
    Eyes hurt
    Throat dry
    Loss of balance
    Weird wobbly feeling in my legs
    Veins hurt
    Neck aches
    Queasy

    I think despite a promising start (lunch with my sister after treatment was nice) I will have to write off this evening and go to sleep early. Today was nice (Jen) and horrid (needle fest!) in equal measure.

    This cycle started rather traumatically since not only did the timing change last minute, they couldn’t find a good vein anywhere for half an hour that didn’t have me yelping with the pain (and believe me, I don’t say that lightly, since I don’t have injections at the dentist for fillings, folks!).

    IMG_1593In the end I was trying not to bite the end off a bottle of water and Jen did a sterling job of trying to distract me – since I was pulling all kinds of gurning faces from being stuck in 4 different places by needles before we could finally get going. I know veins don’t like chemo, but mine shut up shop and went home for lunch!

    And I miss Bob. Need cuddles. Steroids make me feel weepy and HORMONAL! Grrrr! 😉

    The chemo makes me dizzy and my headache may be from that or the bone marrow stimulation injection.

    The steroids are making everything seem like a massive deal because they are like taking a big horse sized PMT pill or something.

    And my hand is sore.

    And I had to crawl upstairs to bed – which did make me laugh a bit at myself (as if there was the version of me doing the things and then the other me watching me doing the things and shaking my head about the ridiculousness of all this) as I was climbing stairs on my hands and knees and bawling in the style of a 2 year old.

    It did make me very pleased I have a cleaner to clean my stairs too, or that would have been an even more traumatic experience.

    But anyway, here I am with my phone on dimmed setting, feeling dizzy, hungover but hyped up like I’m on something rather more racy than bottled water, not getting to sleep even though all of the above would suggest that this sleeping thing is a
    Bloody Good Idea.

    I want a dog,
    A chihuahua
    When I get back to my small flat
    I want to hear somebody bark
    Oh, you can get lonely

    Don’t want a cat,
    Scratching its claws all over my
    Habitat
    Giving no love and getting fat
    Oh, (oh oh) you can get lonely
    And a cat’s no help with that

    Lyrics by Neil Tennant

  • We are family

    Everyone can see we’re together, as we walk on by
    And we fly just like birds of a feather, I won’t tell no lie
    All of the people around us they say, Can they be that close
    Just let me state for the record… We’re giving love in a family dose.

    We are family, I got all my sisters with me
    We are family, Get up everybody and sing!

    Wow, what a busy couple of weeks it has been. so much to talk about. But I’m going to focus on the most important one first. My lovely family.

    Today I’m thinking particularly about my sister Jen who I’m looking forward to seeing again soon. Various things have happened over the last couple of weeks that have made me really appreciate what I have in her friendship and how lucky I am to have her in my family.

    So… Jen and I have always been pretty close. We had a pretty idyllic childhood, we’re very lucky to have the family and extended family we have and we’ve always been given love and support by every one of them. We were born 3 years a month and two days apart, and because we have birthdays at the same time of year my folks basically put up party decorations in the house for my birthday and they stayed up then until the New Year. I never think about my own birthday without thinking of hers and Christmas all in with it – as one big two-month-long party!

    My little sis
    My little sister

    When Jen was born I was old enough to realise that I shared the responsibility of looking out for her… and there are plenty of pictures of me beaming proudly as I sat with her.

    Whilst a little sister was someone that could potentially run off with my toys, she was also a potential source of entertainment and interaction which I have always appreciated. We had great fun making up games to play together. And although at times we irritated the hell out of each other growing up, there was never a question of whether it would be me and her against the world!

    Jen was the person who sat with me for my first chemo session… and I wouldn’t / couldn’t have chosen a better person for the job. She’s calm in the face of all the crap that goes with chemo, knows just when to crack a joke to lighten the mood and knows me pretty well so can natter with me for hours. Sat waiting for the chemo nurse that first time, with vats of blue liquid which we weren’t sure were for the machine or me, we managed to talk about all the normal things that girls like to natter about. And whilst I was faced with syringes full of cold bright red liquid that make my veins ache, she was the one who could make me laugh.

    Come to think of it, she’s the first person I thought of and spoke to when, about ten and a half years ago, I was having a tough time and thinking about finishing a relationship. Whilst I did talk to friends as well, Jen can tell as much from my silences as she can from what I tell her. She’s never judgemental (well, to my face anyway!) and she knows when not to push me. I totally trust her to manage the conversation with supreme skill. I guess that’s why she’s in the kind of client-facing business she is, too!

    If I were drinking champagne, I’d be raising a glass at this point to my lovely sister. But a tasty pint of fresh squeezed orange juice will do for now!

    Jen, you’re the best, I love you and I’m looking forward to hanging out again soon! xxx

  • Slap headed

    Today, with all those lovely ‘roids pumping around my body, I awoke at 5.30. Since I only managed to get to sleep at 1am I did think that was a little bit tight! But I was totally alert by 6.15 and I was up and rummaging around in the drawers, because part of the reason I couldn’t sleep was I had a PILLOWFULL of hair.

    It was like sleeping on the back doormat or a wire-coated retriever. Not something to recommend! So I decided I’d had it with my remaining excuse for hair and it would be going this morning, no matter how shoddy the implement to do it with. As it is, I found some trimmers (hurray!) and set to work with them set on number 6, then 3, then 1… it was a bit tricky getting the back bits but I did the best I can until I can get someone else to neaten me up – preferably take it to a grade 0. 🙂

    Bald, slap headed and hairless
    bald he is destined to be
    bald, well tonight thank God it’s him instead of me.

    Lyrics by The Darkness

  • Tomorrow we might awake on the other side

    So it’s time for the hair to come off. It’s bugging me now. I daren’t touch it as every time I do I get a shoulder-full.

    I would have thought getting someone to strim all your hair off would be quite an easy job but finding a hairdresser who’s available when I am seems to be trickier than expected! And I daren’t do it myself – not because that wouldn’t yield hilarious results and probably keep me giggling for an hour, but more because I’ll probably make a mess everywhere and my hair is already getting into EVERYTHING as it is! 🙂

    I had a lovely message through from my sister, who’s one of about 4 followers to this blog… she said:

    “You are beautiful, inside and out. It is no coincidence that people say you remind them of famous beautiful people… Christina Ricci and Katy Perry to name two… So you’re gonna look like Sigourney Weaver for a while, that can’t be bad either! Try and remember that the next time you look in a mirror. (Though maybe don’t go as far as picturing an alien busting out of your belly!) Xxxxx”

    She’s been reading my other post about my hair loss.

    Now, obviously she’s just being lovely, but that made me think of this song, which always makes me cry… (and sometimes when you’re feeling grumpy that’s a good thing!)  🙂

    Everyday is so wonderful, then suddenly, It’s hard to breathe
    Now and then I get insecure… from all the pain, I’m so ashamed
    I am beautiful, no matter what they say, Words can’t bring me down
    I am beautiful, In every single way, Yes words can’t bring me down
    Oh no. So don’t you bring me down today

    To all your friends you’re delirious, So consumed in all your doom, ooh
    Trying hard to fill the emptiness,
    The pieces gone, left the puzzle undone. (Ain’t that the way it is)

    You are beautiful, No matter what they say;
    Words can’t bring you down, Oh no,
    You are beautiful, in every single way.
    Yes words can’t bring you down, Oh no,
    So don’t you bring me down today.

    No matter what we do (No matter what we do),
    No matter what we say (No matter what we say)
    We’re the song inside the tune (Yeah, oh yeah), Full of beautiful mistakes
    And everywhere we go (And everywhere we go),
    The sun will always shine (The sun will always, always, shine)
    And tomorrow we might awake, On the other side

    We are beautiful, no matter what they say
    Yes words won’t bring us down, Oh no
    We are beautiful, in every single way
    Yes words can’t bring us down, Oh no
    So don’t you bring me down today.

    “You are beautiful” by Linda Perry, sung by Christina Aguilera

  • Mr Blue Sky

    Mr. Blue Sky, please tell us why you had to hide away
    For so long… where did we go wrong.

    Hey there Mr. Blue, we’re so pleased to be with you
    Look around see what you do,
    Everybody smiles at you.

    Hey you with the pretty face, welcome to the human race
    A celebration, Mr. Blue Sky’s up there waitin’ and today
    Is the day we’ve waited for

     

    So today’s the day I’ve been waiting for. It’s chemo day 2, and all the chemicals have been delivered and piled up in my living room.

    I woke up with a headache this morning which isn’t ideal, because that’s put me in the wrong mood to have people sticking needles into me and yattering at me for 2 hours whilst horrid chemicals are pumped in and make my arm ache. But we shall see. Nice Alice will just have to try harder to be cheerful.

    Carrying on from that thought from yesterday about diving in to cold water… I hate diving. Water shoving itself rudely up my nose and making my head ache. The chemo meds make my sinuses ache like that, which I’m trying not to think about too much because I really don’t want each chemo session to be this big stressful event. But I am feeling stressed and sad and grumpy and sorry for myself today. I think it’s because I’m not sleeping terribly well.

    I haven’t tested any theories about the poor sleep / headache yet, but the mattress I’m on isn’t the most wonderful thing in my life at the moment. It’s all memory foam, and so there are no edges to the bed, and it feels like I’m going to fall out at any minute when the edge squashes down unexpectedly. I changed it because it’s supposed to be better for your back… I have to say I have yet to be convinced of the benefits but I am determined to complete the test scientifically by giving it enough time to do some good. I wake up every day with all the sheets and blankets having re-arranged themselves into massive rucks (how?!) so it’s not getting my vote on practicality either.

    Anyone who knows me well, will know that I didn’t get the nickname princesspea for nothing. If I don’t sleep well, nobody will be having a good day the next day! Kind of an anti-Bagpuss. Alice is awake, so all of the mice on the mouse organ, Professor Yaffle, Madeleine and Gabriel are going to bloodywell hear all about it – and they will ensure that it doesn’t happen again!

    ————

    18:15

    My parents were with me for my chemo today which was nice to catch up. My mum even managed to sit still for more than a few minutes. 😉 We had a natter to Claire the nurse. Before she arrived, my dad brought the mower over and blitzed the back garden grass (the strimmer went kaput at the weekend!) whilst my Mum helped me with the housework and we arranged some lovely flowers she bought me.

    Then of course I had to sit still for the treatment with my arm wrapped in a heating pad. The only reason for that heat pad is that the drugs are all in solution in syringes and in a polystyrene box with an ice pack when they are delivered in the morning – so they’re rather cold going into my hand, and for some reason they go down to my ring finger and little finger first before they go up my arm – so I end up with an achy hand if I don’t wrap my arm up with the pad. So the heat from that helps warm up the saline and drugs as they go in my arm. Boy, did my hand ache though when the heating pad turned itself off! We soon re-set the heater again when I started whinging about that! 🙂

    We had the records on the player – Queen’s “A day at the races”, Beatles “Magical Mystery Tour” and Simon & Garfunkel greatest hits, to keep us entertained. Having a record player is lovely… there’s a real old fashioned theatre to getting up off your backside, crossing the room to put a record on the player, having pulled the inner sleeve out of the cardboard cover, often filled with song lyrics or larger format photos of the band than you can get on CD, and then running the little brush round to get rid of the dust… it’s a real performance but it’s a bit like cookery, you do some of the extras for the sheer pleasure of it.

    Once the treatment was done, about 3.45, I was determined that it was time for a treat – so we headed down to the cake shop – Fancy on Roff Avenue – for one of their lovely cakes. I had chocolate cake and some hot chocolate – so my full chocolate hit for the week all in one go! Mum had shortbread and Dad had a slice of lime and coconut cake. I was straight on Foursquare, Twitter and Facebook hooting, tooting, tweeting and feebing about it. 🙂

    I’m fairly wired now with all the steroids pumping around – it’s like a massive bottle of coke and 4 chocolate cookies… Hee!

    Lyrics from Electric Light Orchestra – Mr Blue Sky