Alice… what's the matter?

breast cancer blogger

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

  • Ring the bells

    Ring the bells, wake the town,
    Everyone is sleeping.
    Shout at the crowd, wake them up
    This anger’s deeper than sleep.

    Got to keep awake to what is happening.
    I can’t see a thing through my ambitions,
    I no longer feel like God is watching over me

    Got to tell the world we’ve all been dreaming
    This is not the end, a new beginning
    I no longer feel my God is watching over me.

    Tomorrow’s the big day.

    Ring the bells to tell the town that Alice starts day 1 of chemo tomorrow.

    So – my feelings over the last few hours were ranging from calm to grumpy and a bit scared. @Horse_ebooks has it right – “you are not in control of the things” – and that’s just spouting randomness.

    I don’t like not knowing how I will react to my body being attacked by extracts of Yew tree and other such poisons, and I worry that I’ve left having things like a haircut too late and my hair will fall out in clumps with a horrible ripping  noise. And of course it won’t happen like that but I have such a wonderful imagination that can also be a slight disadvantage at times like this.

    And I have a friend’s funeral to attend on Wednesday and I’m worried I won’t feel well enough to go. I hope I’m wrong and I just feel a bit tired. She was a lovely lady who grabbed life by the bollocks and shook every last ounce of fun out of it, and I want to pay her the tribute of doing exactly the same, despite being presented with a few challenges such as day one of chemo the day before her funeral.

    I want to do this over the next 7 days:

    Tuesday
    Get some work done, get shopping delivery, have chemo chemicals delivered, have brunch with my sister who will be here for the day, have chemo, have some nice chats with my sister and a friend, have some tea (if I can) and then some kip.

    Wednesday
    Get out to a coffee or lunch with friends, go to a funeral, go to funeral wake #1 in the local pub near where I work.

    Thursday
    Back to work – hope I can concentrate properly!!

    Friday
    Morning – Work (concentrate!)
    – Work has been very supportive already allowing for the various appointments and op recovery time I’ve needed. I’ll be aiming to continue working as much as possible.

    Afternoon – An ultrasound scan at the hospital for unrelated thing #1 – endometriotic cysts.
    – Fun fun fun! – but at least I’ve had them before and so know the symptoms. (This time though, they can’t hoover them out, and so they won’t operate unless they have to, which means the symptoms stay.) The silver lining of chemo, apart from it meaning I’m less likely to die of cancer, is that the drugs also interfere with your hormone levels. Whilst I will most likely have unpleasant hot flushes, I may not have the very painful stomach cramps and other horrible muscle spasms each month for the duration of treatment.

    Evening – Funeral wake #2
    – I’ve been invited to a dining pub out in the countryside; I am hopeful I will feel up to driving about as I’ll be off the booze. It could be a strange experience if I turn up with no appetite, as normally I over-order to excess allowing myself the opportunity to eat my own bodyweight in delicious food. Plus, even if I have an appetite, I’m not supposed to eat most of the stuff they serve, various gamey meats, potatoes dripping in butter and cheese or a little nibbles bowl with chorizo chipolatas ready to ooze their saturated fats all over my greedy fingers.

    Saturday & Sunday

    Meet my parents and Uncle / Aunt in some bonkers National Trust house and chuckle about some old tat that the bonkers owner collected and displayed there, and then (hopefully) go and look at some nice gardens in the sunshine, have cake and a cuppa, and chat to my family. Then a meal and a hotel stay that night. The weekend plan involves some travel time to the West country so I will have to see whether I am ok to get up early and get there for lunch, or just merely do a leisurely saunter over there in time for dinner.

    Monday
    MRI scan at the hospital for an unrelated thing #2 – strange lump in my buttock.

    It’s probably nothing to worry about – but they had a look and then didn’t laugh and tell me to feck off. (So that means I’m not just a whinging hypochondriac, honest!)

    PHEW!

    I’ve done such a great job of maintaining a calm demeanour and trying to make sure everyone else is as unaffected by my crap as possible and I’m now starting to feel a bit cross with myself. I wonder if I’ve done such a good job that nobody will pay attention when it actually matters. Or indeed if I will feel tired but not ask for help…

    In some ways I am more worried about Lymphodema than the chemo, because hair grows back, but once you have lymphodema it’s hard to get rid of it. MUST stop using my left arm to lift things! I will talk more about Lymphodema another day, because I’m tired now.

    Lyrics by James (Booth/Glennie/Gott)

  • Forget what we’re told

    Today was the day I had the news about me that I neither wanted nor was really expecting. After all, most of the conversations up until that point had been about a surprise that my tumour was anything but benign in the first place, and certainly the node biopsies had been negative.

    But no.

    I knew before the consultant said what the results were – because he asked me if I had anyone with me today. “Uh-fecking-oh”, I thought. “Here we go.”

    Apparently, my results were thus:

    Tumour

    – T2, Grade 2, size 2.5cm (1 inch).
    (That’s not tiny, but it’s not that big in the scheme of things, so that’s good)

    Margins clear and no lymphovascular involvement.
    (That’s very good, apparently, since it’s less likely to have carried cancer cells elsewhere and it means that I don’t need to have any more removed from my breast)

    HER negative – (herceptin negative – so no markers for more aggressive cancers found)

    ER positive – (e.g. oestrogen receptive, so will respond well to hormone therapy)

    “Ok,” I thought. “So far, so good…” 

    Lymph nodes

    – 3 out of the 4 taken were clear.

    BUT tests showed that the sentinel lymph node (the one most directly connected to the breast and therefore most likely to become cancerous) had indeed got cancer cells in it.

    What does it mean?

    It’s now a numbers game. The oncologist plugs all the results into adjuvantonline.com and then interprets the results.

    Because I’m young to have cancer (pre-40s) that means that if I opt to only have radiotherapy, my prognosis for getting more cancer in future is greater – with about 64% chance of being alive after 10 years. Yikes!

    But with combined chemo (FEC and Taxotere) and hormone therapy as well as radiotherapy, the numbers look much better. 84% of people alive after 10 years.

    Plus, with the HER negativity I’m told that improves these numbers by about 5% so we’re looking at around 89% of patients remaining clear of cancer after 10 years.

    I like those numbers much better. So it’s a bit of a no-brainer in terms of what I have to do really for the next 6-8 months:

    1) Chemotherapy in cycles of 3 weeks @ 4 weeks of 75mg/m ² of FEC and then 4 cycles of x 75mg/m ² of TAXOTERE

    2) Hormone therapy (Tamoxifen)

    3) Another op to remove the remaining lymph glands in my left arm

    So there was I, sat in the hospital on my own, feeling a little bit sorry for myself. But actually, this has been a bit of a shite few weeks for many other people so I should shut up really since I have my chance to fight.

    What is it with this last few months and bad news? Yesterday I heard that a friend of mine not greatly older than I am, died this weekend. Her other half came to see me today and I was nearly in bits seeing him so sad and yet so calm telling me about how she’d been struggling the last weeks and he showed me his wedding ring; they had got married on Saturday.

    So let me just say this. I do appreciate what I have. I am alive, with family and friends who love me and with a lot of people showing support for me. I will fight, and I will come through. And I will remember those who haven’t or whose loved ones haven’t.

    Big hugs to you all. xxx

    We’ll do it all
    Everything
    On our own.
    We don’t need
    Anything
    Or anyone.

    If I lay here
    If I just lay here
    Would you lie with me
    And just forget the world?

    Lyrics from Snow Patrol

  • Being Boring

    I’ve had a bit of time to myself today. I read a book, watched some TV, and pottered about – but I’ve been a bit fidgety. I had a visit at lunchtime for a few minutes from someone I’ve not kept in touch with as much as I’d like but who has been a big part of my life for a number of years. Unfortunately it’s made me quite introspective.

    Every so often, I get a little bit too much free time to think about things and I get grumpy for a bit. This afternoon’s been one of those times. The challenge is to fight the urge to curl up and feel sorry for myself about all the things that haven’t gone to plan this year. (Girls do that apparently, I’m told we pick a thing we don’t like and then collate it into a list with lots of other things we also didn’t like). 

    For the last 12 months, possibly more, I’ve withdrawn into myself when I’m not trying to stay busy by organising some kind of massive social event. I need to involve myself in planning fun things even when I’m not feeling entirely fun or funny myself. For whatever reason (and there are probably a few) I wasn’t happy for some time over the last couple of years and that felt wrong; I reasoned that if I wasn’t feeling right I could take drastic action and correct everything, like I did a few years earlier when I’d felt so down.

    So I did, I took action and I made some changes in my life. I’m still making them. And it’s hard on me and on the people who love me. When I look back at where I’ve come from it fills me with terrible sadness about the difficult choices I’ve made because I take all the responsibility for their impact (whether that’s fair to me or not, I don’t know). I don’t always feel certain about my decisions at the best of times, but the people who know me know that I try not to live with regrets, so I don’t make decisions lightly and I don’t enjoy re-visiting them once they are made.

    Cancer doesn’t allow you the luxury of making decisions. It takes choices away from you and it makes you wait. And whilst you’re waiting you can either keep busy or you can go into meltdown. Luckily for me, I’m pretty good at keeping busy so I’ve done as much of that as I can, by filling in forms, making phone calls, planning and putting things in diary entries, shopping, emails and chats online.

    What I will be grateful for (fingers crossed) is that most of my cancer is gone and that I’m going to nuke any last remaining trace of it over the next few weeks. Grateful that my friends and family love me and have been there for me, regardless of how often or not I’ve kept in touch with them or how my behaviour over the last months has made them feel.

    Some of us don’t get the chance to make amends or to recover from cancer. A friend who was at school with me was one of the unlucky ones who didn’t survive her cancer. Being Boring was her favourite Pet Shop Boys song. At least I get to sit here and be bored. This one’s for her. x

    Now I sit with different faces
    In rented rooms and foreign places
    All the people I was kissing
    Some are here and some are missing
    In the nineteen-nineties
    I never dreamt that I would get to be
    The creature that I always meant to be
    But I thought in spite of dreams
    You’d be sitting somewhere here with me.

    ‘Cause we were never being boring
    We had too much time to find for ourselves
    And we were never being boring
    We dressed up and fought, then thought: “Make amends”
    And we were never holding back or worried that
    Time would come to an end
    We were always hoping that, looking back
    You could always rely on a friend.

  • Shut your eyes

    Shut your eyes, I spin the big chair

    And you’ll feel dizzy, light and free

    And falling gently on the cushion

    You can come and sing to me

    I’ve had some pretty strange dreams over the last few days.

    In Saturday night’s dream, I was on a beach pottering about between rock pools. Most of my past and present work colleagues were there (?!) enjoying the sea and sunshine and indeed one of them was giving a lecture on how bad everybody else in the company is at their area of specialism.

    Dream me felt compelled to point out that indeed wouldn’t it be better to stop complaining about that and explain to people how they can be better at it? Then I launched off into a pool which stretched some way in under the roof of a cave. In that pool, somehow people were able to float both in the water and also several feet above it in the mist around the cave entrance. Nice!

    Just as I began to float in the air above the water I awoke.

    On Monday morning I awoke from a dream whereby I was again in water, but this time had been tasked with sitting in a giant fish tank and was having to cut angelfish (quite flat ones) in half with a pair of scissors to kill them.

    Lyrics courtesy of Snow Patrol

  • Nobody said it was easy…

    Had a nice chat to a friend who’s living in Holland at the moment. She’s moved back there after living in the UK for many years. The catalyst for that was a combination of things including the break up of a relationship and the end of one of her work contracts.

    Originally, my friends and I had been trying to persuade her to move nearer to us and find work nearby so we could all socialise. I’m not convinced she was that fussed for the idea, but I definitely stopped hassling her to do that and put the stoppers on the entire idea by splitting up with my other half and suddenly becoming very antisocial as a result.

    This year has been crazy just in terms of the sheer number of people that have split up with each other. In fact everyone in a one group of my friends (mainly couples) has split up. It’s like a ripple effect of unhappiness. It’s very weird how things happen like that. In fact, having done a quick search on one of the more gossipy newspaper/rag websites it’s apparent that my theory is not unfounded:

    Yes, divorce is infectious… (Daily Mail article)

    It’s a myth that second marriages are more successful than first marriages. In fact I’m led to believe that remarriages have a higher divorce rate. Perhaps it’s because, having “survived” the process once, the fear of the decision lessens and the choice is easier to make. It doesn’t necessarily make the decision the correct one, of course, but it can be made with more confidence.

    I heard a depressing statistic the other day that around 50% of all marriages now end in divorce. I’m not convinced it’s that high but even so I am saddened that it’s on the increase no matter what the headline figure is.

    Particularly, I was thinking back to when everything was new with my last relationship and splitting up was unfathomable.  But then, things you don’t expect to happen in your life have a bigger impact on you than you’d like to admit, and whilst it’s not the fault of your partner, they become associated with each difficulty or sadness in your mind.

    For example, a couple who have some difficult events in their lives – such as a miscarriage,  trouble conceiving, unhappy with work, health issues etc. Could such a couple continue to nurture their relationship and ride the rocky patches? Yes of course they can. IF they are both in the right state of mind, continue to love and care for each other and if they express that on a regular basis and if they aren’t stressed and working late and if they don’t have other health problems to deal with.

    These things add up. They sometimes pile up into a great unnavigable heap. That’s when it gets difficult even talking about all that crap because it can make life even more depressing. I should know.

    Nobody said it was easy
    It’s such a shame for us to part
    Nobody said it was easy
    No one ever said it would be this hard…
    Oh take me back to the start
    Lyrics by Coldplay