XI – Relax

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Don’t get me wrong, everything I have written before now has been completely honest and genuine. It still will be, too. It’s not been me being tough or just totally looking on the bright side, it is honestly how I have been feeling. But I haven’t written for a while; now things are different. I’ve got all this time to relax; yet it’s the one thing I cannot do. I’m trying to figure out how to explain, without sounding dramatic or OTT about how I am really feeling. How can I tell you all, that this is sucking the life out of me and has created some really uncharted territory for me, in the nicest possible way =)
I have felt myself gradually go downhill over the last 5-6 weeks, just after my second chemo. I had a beautiful lunch organised by some family friends who were so generous, I had such a great day. Then following that week I went into my work at Merrylands High to pick up something from my wonderful principal, Lila. During my quick visit I just happened to run into a couple of my fav HSC students, I got to catch up with my close colleagues and I saw my awesome gorgeous netball girls who were so blatantly ecstatic to see me, they were screaming and running at me and hugging me and some were nearly crying. And I was just as excited haha. I was so pumped to see them, they were on their way to Tuesday sport to play against another school and I was gutted I couldn’t go watch. After my visit, I got really, really sad. It made me miss my old life, my students, my colleagues, my routine, made me realise how much my life has changed. I really, really miss normality.

I’ve got such an overwhelming amount of support from my friends, family and extended community. I’ve got every which way to reach out for help with nurses, doctors, counsellors, friends, cousins, uncles, aunties, parents, every which way of possibly being supported, I have got, and I am not afraid to use them. But when it comes down to it, and coping with this anxiety I have developed, it’s really just up to me. And it’s just so much pressure. I so desperately want to feel good and happy, I am craving the vitality I used to have. In those weeks when I’m sick, motionless on the couch, it is so lonely. Just you and your mind. It’s true your mind can really be your best friend, or your worst enemy.
I’m so used to the hussle bustle life and go go go, I’ve really had to stop and try to learn to take each day by day, hour by hour and sometimes looking at the clock making it through minute by minute. It’s really difficult, this whole stopping business. Trying to be in the present moment.
Another stress is my hair falling out. I’ve been totally blessed with the opportunity to use penguins cold caps, if you don’t know what they are, google them. I’m nearly 3 months down with chemo now, 3 months to go and I am supposed to be completely bald. But I’m not. I’ve lost probably about half my hair, to anyone else I don’t think it’d be that noticeable because I had really thick hair in the first place. But I notice it, I can only wash my hair every 2-3 weeks and am not allowed to brush or blow dry or straighten it. It’s not that big of a deal coz I never really liked doing my hair anyway haha!
The ‘bad’ chemo drug (AC) is now done and dusted, I’ll never have to do it again. Which I am so glad for. The next drug named Taxol, starts in 2 weeks and is every Friday, instead of 3 weekly. It’s not supposed to be nearly as bad as the AC, as in, no nausea, only fatigue and towards the end you can develop a bit of temporary peripheral neuropathy and oedema, which is like pins and needles and your hands and feet and swelling a bit. I can deal with that.
What I am struggling to deal with is these cold caps. They are cold. Like, -40 cold. I have to wear them for an hour before chemo and then four hours after, which is tiring, long and arduous. They are also expensive and I have a moral dilemma using this money to save my mop. Is it justified? I’ve also developed an aversion to them, the look of them, the sound of them, the smell of them make me feel sick. Even writing about them right now makes me feel nauseas. What I don’t want is to go into my next type of chemo having such a struggle with these caps, making myself literally sick with them that it makes the next type of chemo just as hard. It’s all in my mind, and it’s tough.

I am embarrassed to say that, as brave and as outgoing as people think I am, I don’t have the mechanism in me that could just say F!@# society, how dare they tell me I need to have long hair anyway. I really wish I did. Maybe being hair free would create that emancipation in me? Maybe it’s what I need to flip the bird to society. Maybe it is in me. Maybe it’s in all of us. I just know I am having a difficult time deciding whether to still use them, as it will be every Friday for 12 weeks, 7-8 hours at a time.

When I said before that I can deal with the side effects of the next chemo, it was a bit of a lie. I’m really scared. It’s all really scary and I’ve never been scared of life before. I’ve bungy jumped, sky dived, jumped off massive cliffs into oceans, I’d do most things like that. But this is different, my body is paying the toll of the chemo and I can really feel it. I can feel it in my mind, I’m not sure whether it’s the chemo making me feel like this or something that’s just always been in me. You know after you cry heaps and heaps, like really cry about something, and then afterwards you have that puffy, foggy feeling in your eyes? Like a tiredness. I’ve got that feeling 24/7. My body doesn’t heal like it should do at the moment, my beautiful Canadian Maman Diane gave me a leg massage the other day when I wasn’t feeling so good, the next day my shin was all bruised. And it was far from a deep tissue massage haha. I cannot wait for my body to be healed from this, to feel vital and to feel my fitness return.

Amongst all these thoughts and feelings and anxieties and troubles, I do still get out and I do still have a laugh. I just find myself worrying though, worrying about now, worrying about my future, worrying about what I’ll do after all this and how on earth life with ever go back to normal? Am I supposed to go on some whirlwind adventure and ‘find myself’ after this? Or save the world somehow? Or was I enough before. Who knows. Let’s keep trying to go day by day, shall we xx

Byron Bay Getaway

Byron Bay Getaway

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10 thoughts on “XI – Relax

  1. Lois

    You’re so right that it’s a mind game! Day by day is the real key Ali or you’ll go nuts…….that’s me speaking from experience here with my crappy life full of drugs pain fatigue nausea etc etc etc!! I would give anything sometimes to be able to go back to my ‘normal’ life, but I know it isn’t going to happen for me 😦 Focus on the here & now & give yourself a BIG pat on the back when you get through each day. Your love of life, even going through this bleak time, just highlights how inspirational you are Ali 🙂 At the end of this you’ll still be YOU…..the beautiful warm hearted smiley Ali!!!!

    MY tips for alleviating life-sucking boredom & loneliness:
    Being in bed most of the time & on my own here at home, I live vicariously through reading my favourite blogs. i also read a lot & knit & crochet……want any lessons? 🙂 When I’m desperate I watch TV!

  2. claire c

    You are an absolute inspiration. you are amazing and are being so raw and honest. love ya babe. sending massive good vibes your way. xoxxxx

  3. Melissa

    This is your time to be selfish Ali! No one can ever tell you how your suppose to cope. From being able to read these posts and from speaking with Lindie, i think you are one true warrior princess!! Sending all my love and strength x

  4. Corinne

    Hey Ali, you don’t know me but I’ve been keeping up to date with your blog through Lindie.
    In regards to ‘finding yourself’ and ‘being enough’… In the words of Dr Seuss ‘those who mind, don’t matter and those who matter, don’t mind’. This is relevant anywhere you are. You can go and ‘find’ yourself, but you’ll find that you’ve always been who you are supposed to be at that point in your life… And you will still be loved for it. I guess this also applies to your hair – you’ll be beautiful regardless, but you just need to figure out how to tell yourself that (coz everyone else already knows).

  5. Kellie Robertson

    Hey Ali, I’m married to Graham , Lindie cousin, this makes us cousins too …??? Haha ! just wanted to tell you ,I love reading your blogs and often wonder how your doing, I do ask Aunty Jenny when ever we speak, I know some what ,of your struggles, as I have just been through all this ,beside my mum, but the good news there is light at the end of the tunnel, as she has been told that she is now in CR= complete remission …. Just as I know you will be one day too xx chin up ,you can do this , you are young fit and healthy and have so much support! lots of love xxx

  6. Naomi

    Your life has already been full of adventure, you have done so much more than many people will ever do in an entire lifetime. I say do what YOU feel you need to do. More adventure then great. Chill and hide away with your nearest and dearest for a while – just as great. Eat halloumi and sing one direction songs, maybe not so great 😉

    A true inspiration Sunshine, love you heaps.

    Nomes xx

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