XIII – Thinking Out Loud

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Chemo is DONE! FINITO! FINISHED! FERTIG! FINI!

Thank god. Thank the heavens. Thank Allah. Thank Jesus. Thank Buddha. Thank every deity known and praised to mankind. But most importantly, to me,

THANK THE UNIVERSE.

I can’t even begin to explain to you how much of a relief it is, to know that I have finished chemo. It still doesn’t feel fully real. It’s been 6 months since I started chemo, 8 months now since I was diagnosed. Although it was dragging a little bit in the bad days of chemo, I feel like it really has gone fast. I don’t actually feel like I have finished chemo yet; I am still dealing with a few side effects from my last bout, which was the 17th October. About halfway through Taxol, I developed a really crazy itch over my whole body, unbearable. Like it brought tears to my eyes sometimes. If I scratched it, it made it ten times worse. So they switched up my chemo drug to another one which was a sister drug; it was more potent so I changed from going every Friday, to just having two Paclitaxels 3 weeks apart. They were OK. Not nearly as bad as the AC – I could still function. Just reallllllly, really, really, really tired. ‘Never been so tired in my life’, tired. I had a few days off work last week because I just couldn’t get out of bed. Well on Thursday I managed to get out of bed and get to work, only to be there for about 20 minutes and decided I needed to go back home to bed. So I have been doing a whole lot of sleeping. Another side effect has been ulcers and chronic desert mouth. I guess you get used to it after a while, but it still doesn’t make it pleasant. I still have desert mouth now, so thirsty and no amount of hydration will quench the thirst. My whole mouth feels raw, like someone has scratched it out with steel wool. But look, my inherent love of food has well surpassed my sore mouth; it has not stopped me. I have also had really excruciating leg cramps. Aching pain in my knees and hips, cramps in my thighs. I’m not sure why that is the only region that was affected, but it was pretty bad. For a few days I would waddle around like Donald Duck. I felt like I lost my strength in my quads, so found it really hard to walk up even the smallest amount of stairs. Just a few days ago, I was lying in my bed, having a sob because my legs were just so sore. I was thinking about life after leg cramps. I was imagining myself going for a jog, riding my bike (I GOT A BIKE!!!) and even just walking without being in pain. I was trying to remind myself that this feeling wont last forever. Now I am over the leg pains, I feel overwhelmed with gratefulness that my legs aren’t sore. They will never be sore from chemo again. Soon, my nose will stop bleeding every day, my eyes wont water and get things in them all the time because I’ll have eyelashes again and every nick and cut I get will heal instead of just be there constantly.

I ended up shaving my head. My hair continued to fall out after I stopped using the cold caps and was totally gross, so I just went for the old buzz cut. Being bald is not the best thing that’s ever happened to me. It felt really fresh when I first did it. I can see these patterns of dissatisfaction in my thoughts, though. When I was using the cold caps, I was unhappy about my hair being short, being gross (not being able to wash it all the time) and I was unhappy about it constantly moulting. Then I shaved it and thought YAY! I never have to worry about it malting like that again. It didn’t take long for me to get to a place where I was then unhappy about being bald. I don’t like the way it looks, I feel unpretty; unfeminine. I think i can predict what is going to happen – is my hair going to start growing back and I’ll then be unhappy because it’s short? What’s going to be the next thing that I will be unhappy about? I really would like to get to a place of contentment with how I look – I am not quite sure how to get there though. It’s in the plan.

I want to make a promise to myself that once I get my eyebrows and eyelashes back, I will never complain or give myself negative self talk about how I look again. Easier said than done, I think! By far, having lost my eyelashes and eyebrows is worse than having lost my long blonde hair. I don’t think that anyone should have to see themselves like this. It is without a doubt, the most confronting part of cancer. When I get out of the shower and see myself with no hair, no eyebrows, no eyelashes, it is shocking. EVERY. SINGLE. TIME. It never gets easier.  I never get used to it. I make light of it and liken myself to Uncle Fester. But it’s still not fun. It’s been a new thing learning how to apply makeup so I look semi-normal, too! I look back at photos of myself, with my long blonde hair, weirdly dark eyebrows for a blonde and Mr. Snuffleupagus eyelashes and think about how beautiful I was. But then I also think back to when all those photos were taken of me with my long blonde hair, weirdly dark eyebrows and Mr. Snuffleupagus eyelashes and can’t remember ever thinking about how beautiful I was at the time of said photos. Why is that? I think it’s because I was probably focusing on something else I didn’t like about myself at the time. So what should I lesson should I learn from this? STOP FOCUSING ON ALL THE BAD STUFF. I hear it from myself constantly and I hear it from female family and friends around me. All the time. It’s like a normal, acceptable thing for women to not be happy with how they look. I think it’s time to change it up.

Now that I have finished my whinge about chemo symptoms and being bald, the real reason I wanted to write this blog was to thank some people. My thankyous. They go out to a hectic bunch of people. Even though I am still not finished the year yet (radiation to go), chemo is finished. The worst is over. Those that have been closest too me, have seen me fall apart this year. I don’t really know how else to put it! That sounds soooooo draaaaaamatic. But I have fallen apart. I’m not sure that I’m fully back together yet either, but I’m surely on the mend. I often wonder about how I would ever repay the people that have been there for me; I feel like I will be trying forever to be there for them like they have for me. The only way I can really think of how to thank them is to publicly acknowledge them, and let everyone know just how amazing they are (I know it’s hard to believe that Nikki has a good side, but it comes through occasionally).

I would like to thank everyone that has written to me over the last 8 months, old school friends, strangers, people from all walks of my life. I literally have hundreds of emails/blog comments/ facebooks that I haven’t replied to, but I am so grateful that so many people have me in their thoughts and are so kind to give their time to wish me well. I love hearing from people so much! I honestly do. Just because I haven’t replied to you (yet) doesn’t mean I don’t completely appreciate your kind words and gestures.

Now here is my hot list of heroes in my life.

Tony Larven. I’ve got to give you a mention, T dog. My Physio is a weapon, he’s been my Physio since I was a wee young lass, tending to my many, many sporting injuries. He’s kept me in line (well, tried to anyways). At the beginning of my diagnosis, he was on board, contacting people I wanted contacted for diet, operation rehab, and anything I was concerned about, plus seeing me regularly. When I wanted to throw in the towel, he was still there, on board with me throwing in the towel, haha. He’s given me so much of his time over the last 8 months and I am just so grateful.

Tony (mafia), Shanaka and I

Me and the Mafia

My girlfriends. There are 6 of us who have stuck together since school. We are all so different, but so similar at the same time. I think it says a lot about my friends characters that we have been friends for so long and never had any mishaps or falling outs! Our connections are so strong, we have travelled the world together and are all still so close. I’ve cried to each of them, telling them at the beginning was absolutely heart wrenching. The worst. But they have been there for me since the beginning and I take solace in knowing that they always will be. They da bomb.

Jess, Nikki, Me, Ash, Court and Kaethe. This pic is for you, Mrs S.

 This pic is for you, Mrs S.

Lindie & Daniel. My cousins. I know how hard it has been for them seeing me go through this and being further away. But they both have been a massive support for me and make me laugh all the time. Daniel has been with me when I have been overwhelmed and anxious and has seen me at my worst. I love spending time with him due to the copious amount of laughter he provides me. OHHH WE LAUGH. Lindie has looked into every obsessive fanatical food venture/research with me and we are constantly in contact via text message. She’s my twin. The yin to my yang. She get’s me. I know how hard it is for everyone to know what to say to me and comfort me, but she is the only one that I feel like is feeling what I am feeling with me. She’s got the empathy, yo. If I cry to her on the phone, or tell her I’m upset via text, or whinge to her about having chemo side effects, she doesn’t say ‘it’s ok, think about how good you will feel when they go’, she say’s ‘this is complete BS’. It’s like she’s in the moment with me feeling the frustration too.

Daniel

Lindie and I

Lindie and I

Kristy and Nicole. I’ll lump them into the same category. Kristy is my cousin, Nicole is my sister from another Mister, they are both my fambam. One of the biggest blessings out of this whole cursed cancer saga has been living close to these two gems. They are both hilarious and both have amazing children who I love love love love love spending time with. I’ve said earlier that being with kids is so therapeutic; it’s refreshing. They’ve both loved me at my worst and loved me at my best. And I love them! 

Owie and I

 

Evie, Chloe and I

 

Kristy and I

 

Noyo

Luke Suter. I’m not really sure where he came from, how he just turned up in my life and I’m still not sure if he’s real (am I getting punk*d?). Whatever it is though, I am super glad he is in my life. Not even phased by my situation at all. Date number 2, I told him I had to shave my head and it wasn’t a worry for him. The kindest, friendliest, happiest, positivest, hilariousest, fantasticest, wonderfulest, generousest, beautifulest man I have ever met (I realise that most of those words aren’t real, but I thought I’d throw them in for emphasis). His exact words – ‘It’s only temporary. It’s only temporary. It’s only temporary’. He’s got so much faith in me. More than I have in me, I think. He oozes love. He’s reminded me why I love the universe and has made me see past this year, which I haven’t been able to do for a very long time. He’s got my back. It’s awesome. He’s awesome.

Suterkris and I

 

The De Silvas. Sounds like a sitcom. Probably the best family I know that are not related to me by blood (it may come as a shock to you that Shanaka and I are not related, we do look so much alike). I’ve known them since I was about 15 or 16 and they have always treated me like an adult, which I loved when I was younger. The amount of love, time and support they have given me this year is crazy, unmeasurable amounts. I have on and off lived at their house this year. My home away from home. I’d turn up happy or in tears and they would be there. They gave me a place to go when I didn’t want to be at home, they gave me a job and they have given me so much of their time and there is just no way I will every be able to repay them. They listened to me. The heard every irrational, scared, overanalysing and pained thought I have had. Jules has cried with me, cried with my mum and cried for me, on many occasions. She’s probably crying reading this right now. Shanaka has given me the tough love approach, literally, one step before a slap in the face. He’s my guru! My bald, black, oh so wise guru. There have been many chats with him that have helped give me a reality check. One in particular, when I was at peak anxiety and I was even too scared to go out for a walk. He made Juliet stop the car where we were, made me get out and made me walk home with him, haha. But it worked. The talk we had on that walk I will never forget, because it made me look at some things in my life that weren’t working for me. And you were right Shan, new doors have opened up for me. Their daughter Tia is one of my most favourite people too. She has the emotional intelligence of an adult but is still really good at being a kid too. I love her like she is my own sister. The De Silvas’ saved me this year.

shave3

shave5

Nikki Jane. Well. Where do I even start? It’s not just this year Nikki has coached me through, it’s been for more than ten years! Nikki and I talk minimum 3 times a day. Even before the old cancer card came into action, we spoke this much. When we lived together, we would still call each other on the drive to work and call each other on the way home. Some people may think that is weird, but I just think those people don’t actually know how awesome Nikki is. This Old Love has really stepped it up a notch in the last 8 months, though. I feel like I have bragging rights to the world’s most awesome best friend. If there were a best friend award, she would win it. She was on the phone with me constantly while I was being diagnosed (before I went in for the ultrasound, immediately after the ultrasound finished, before I went to the GP, immediately after the GP). Then she was with me the next day when the GP called to confirm my diagnosis (as were her awesome parents – yes, I am even calling you awesome, Chriso). She pep talks me through life. She knows me better than anyone knows me, sometimes I thinks she knows me better than I know me. She can read my every mood, emotion, action, reaction, she can often tell how I am going to react to things before they even happen so will try and adjust the situation to suit my needs. When I was having my bad weeks, she would come see me every single day after school. Every day. If it were a weekend, she would sit with my mum and drink all the wine while I flailed on the couch in the horrendous state I was in. She told me when it was time to wash my hair. She told me when it was time to shave my head. Most decisions I make in life need Nikki verification before they can be validated. Nikki is selfless. I’m actually in awe of how selfless she is. She is going to make a great wife one day, I’m not sure if she has space in her life for a husband though as I am quite a handful to look after.

My  Buzzy

 

 

Lucky last but not least, my parents. Lynnie and the Big Easy. L-dog and I-man. Lynette and Ian. Could my parents be more kind? Generous? Giving? Loving? Patient? Understanding? I think Corinthians was written about them.

No. The answer is no.

I often wonder how people with no support get through these situations, or with an unstable environment, or have only unstable people to lean on. My parents have not only put up with me, but embraced the Ali way of living without complaining. When I was diagnosed and went crazy (proper crazy) and cleaned out their cupboard of anything that looked even remotely unhealthy/process/not organic and left them with a single piece of lettuce sitting on its lonesome in the fridge, they didn’t complain. When I then made them (expensively) restock the cupboard, they didn’t complain. When I lost track of my back accounts, money, bills, memberships, because it was all just too much and I couldn’t function, Dad took over and organised everything for me without a worry. He always takes everything in his stride, the old man does. Mum is constantly doing everything she can to make sure I am ok/comfortable/happy. Neither of what either of them does goes unnoticed. Even though I know I have not done any of this on purpose or asked for it, it breaks my heart thinking about how much heartache I have caused for them this year. I can’t imagine what it’d be like watching your own child have to go through something like this. They have been so good to me. When I was really sick, it’s like I reverted back to being a child. I wanted food that I loved when I was a kid (mashed potatoes and vegemite toast) and I wanted my mum to look after me! On my worst days (where I couldn’t stand to hear any noise because it hurt my head, the blinds were all drawn closed because I couldn’t stand the light, nothing was cooked because even the slightest scent would make me sick, I was unable to move from the couch from being so weak), on those days, Mum would just sit there. On the couch next to me, because she knew I hated being alone. She just sat there all day. My parents are amazing.

Lynnie!

Lynnie!

My pretty Dad

My pretty Dad

I tear up a little bit reflecting on those horrible days; I thought my life was over. I guess no one will ever really understand it unless they have been through it, no one will really understand just how sick I was unless they saw me. I hope, I pray, I begggggggggggg the universe that no one I love ever has to go through what I went through. They have to find another way to deal with this other than chemo. I would love to be able to say that I have dealt with this whole year with grace and poise. I’ve heard of people that have done that. I’ve heard of people that have been through things like this and show nothing but clarity and composure. That most certainly has not been me. I think it might be time to start picking up the pieces of my life. Maybe let’s see what radiation will throw at me first though.

Untamed hair, out of control eyelashes, unkept eyebrows, it’s the dream!

Untamed hair, out of control eyelashes, unkept eyebrows, it’s the dream!

 

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38 thoughts on “XIII – Thinking Out Loud

  1. I got teary reading this. I admire anyone who goes through what you have, but the love you have around you is abundantly clear through your words. I am so glad you have such support and such hope for the future. May it be long and wonderful.

  2. Tahreer

    Ali you are such an inspiration and you have been a lot , and you are the bravest and the strongest person I have ever met , , from being the best PE teacher at Bghs to becoming the most inspiring person now , I take my hat off for ur bravery , I wish i was as strong as u to express how I feel but ur truely just awsome love you so much and fake care and I hope nothing but pure happiness , u deserve so much in life enjoy it and make the most of it and I hope every illness in the world does not come ur way , stay strong 😘❤️😘❤️😘

    • Thanks so much for your comment! Thanks so much for all your comments – I must say you have to be one of my top fans! I appreciate everything you have written to me throughout 2014 and am so thankful xx

  3. Sarah

    i never knew you with beautiful hair and eyelashes but I still thought you were beautiful when I first met you 🙂 inside and out!

  4. Natti O

    Well done Ali! What a journey you have been on. I am so so happy for you that the chemo has finished. You are an inspiration to all that are around you.

    I think you should take up full time blogging too!
    Lots of love xx

  5. Patricia Smythe

    Ali, I wish I had the words to give you a reply that would describe to you how amazing you are. I hope with all my heart that the universe cuts you a little slack for the next 60 yrs or so. Love Patsie

  6. You are a truly amazing Ali and have a quiet strength and courage that is truly remarkable.
    You have absolutely handled yourself with poise and grace throughout this whole, horrific ordeal:
    Poise – a dignified, self-confident manner or bearing; composure; self-possession
    Grace – A sense of fitness or propriety. A disposition to be generous or helpful; goodwill.
    Poise and grace are not about keeping everything together all the time, they are the way you pick up the pieces time after time when you think you can’t possibly go on. They are about perseverance, kindness and love. This is the stuff you are made of.
    Onward and upward! xxoo

    • THanks for your comment, Roxy. Even though I have taken so long to write back to you, I often think about this comment when I am feeling not so good about myself and then think, you know what, I am pretty awesome =) xx

  7. Bronte Callaghan.

    Ali!! wow. what a journey – so so happy to hear that chemo is done for you. Your honest story is mesmerising to read. xxx

  8. CC

    I really do admire your honesty in these posts. You really are surrounded by LOVE, and I am soooo happy that all these people have been there for you during these challenging, painful, life changing moments. You are my HERO. I love you and miss you soooooooooooooooo much. XOXOXOX

    • I admire your FACE! You’re actually my hero, braving it out in the Winnipeg Winters. Love your face. I’ll be thinking of you while you take the tractor another round and pull the plough across the ground xx

  9. Jenny Green

    As always Ali you blow us away. There is so much love in your words. Keep doing whatever it is you need to do to keep going. There is no script. There is a good reason you have experienced so much love. It’s you! Love you and you awesome entourage . Xx

  10. Caity Catalano

    Just as you now see the beauty in those old photos Ali, I’m sure one day you’ll look back on these blogs and see how strong and inspiring you were. Lots of love and best wishes. Xxxx

  11. Belinda Rae

    Ali you truly are just one of the most amazing souls EVER! Your rawness is so inspiring and your smile as beautiful as ever. Sending love and happiness your way. Xxx

    • Thanks Belinda! Thanks so much for all your love and comments throughout the year. It’s so lovely to hear what you have to say and I’m so glad you have been enjoying my blog. Much love xx

  12. Shell Streats

    Ali you are amazing! Whilst you may not have felt the sunshine whilst you’ve being going through all this, you have definitely spread it to those who have read your stories. Your words are inspiring and you have shared many lessons by which people should live by. You were beautiful with long golden hair, you are beautiful with no hair and no eyelashes, and you will be beauitful for as long as your beautiful soul shines through! Thank you for spreading the sunshine Ali! You kicked chemos ar*e now kick radiations! XX

  13. kellie robertson

    So glad there is light at the end of the tunnel , you have made it this far , you’ll fly throught the last part

  14. Karen

    Dear Ali,
    Well I have spent this afternoon reading your entire blog, after being told about it by my daughter who is a bestie of one of your beasties, pictured in the Eiffel Tower photo above. So I guess I’m sort of an auntie once removed, although we have not met before! I can’t think of any words that haven’t been used already to describe you, but you are truly inspirational, brave, honest, insightful, intelligent, beautiful and wise beyond your years. I’m sure your blog has helped many people and those who have replied are probably the tip of the iceberg. Having just embarked on my own cancer “journey” (I also dislike this term) in the last week, you have motivated me to remain positive and count my blessings. I’m sure I will remember your words and re-read your posts over and over in the next few months. I hope your radiation treatment is going ok and I wish you the very best for a future in which you will continue to shine! xxx

    • Hi Karen!
      Thanks again for your beautiful message. I think about you all the time and hope that treatment isn’t being too harsh on you. If you’d ever like to catch up, please contact me – I gave my number to Kim. Love Ali xx

  15. Jessica

    Hey miss, its Jessica Willis. You’ll probably think its a bit weird with one of your students commenting, replying etc.. but i thought it’d be nice. So i read bits and pieces of your story, its so beautiful, sad, heart touching, happy emotions knowing that youre getting better and healthier.. Having a smile on your face. Its been such a tough journey for you and ive gotta say you have pulled through so well. You stayed strong and solidered on throughout the entier time. Pass class is missing you dearly, yeah we like mr D. He’s a good teacher. But we all cant wait for you too come back. especially all us girls.. We cant wait!! Hopefully you’ll be back soon because i think our Pass class needs to put our heads down ahah.. But i hope youre doing all well, stay strong 🙂 hope to see you soon. xx

    • Hi Girl !! Soooo lovely to hear from you! Of course you can comment on my blog. Thanks so much for your beautiful message, it’s been a tough year but I am at the good end of it now and am excited to come back in a few weeks! It’s going to be an epic year, can’t wait to kick butt with you and my girls in everything we enter! Enjoy the rest of the holidays and I’ll see you very soon, say hi to the girls for me xx

      • Jessica

        aw okay sweet ahaha!! thought it might be abit weird but algood :”) thankyou! and yes, kick butt in eveything! i sure will say hi to all the girls. i told celina i was reading your blog and that i commented on it.. she read it and seen that we were talking, she told me to tell you that she said hello and she hopes youre doing algood. she misses you and everything like that.. ill let the other girls know as well :”) x x im sure they’ll be happy to hear that youre going good 🙂

  16. Sajina

    HEY MISS MONO!!! Bet your wondering who this is…… Its sajina Im pretty sure you still remember me 🙂
    Your blog is absolutely emotional and inspiring I can’t believe what you’ve been through. You are a warrior and a damn fighter. I want to say keep fighting and have faith. The usual E girls Hibaq, Farhana, Sabrina, Tanjuma and Hasina are wishing you a smooth and healthy recovery. We all miss you and hope you get well soon and get back to your usual self energetic, fun and crazy!!! 😉 wishing you the best for the future!
    Sajina xxx 🙂

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