I had originally been diagnosed with a rare head cancer called Adenoid Cystic Carcinoma (ACC) and breast cancer in 2016 (read about it here: https://honeykidsasia.com/what-cancer-has-taught-me-about-motherhood-single-mum-rebecca-mcqueen-shares-her-story/). I was living in Cambodia at the time, so I had my surgeries in Thailand, for both breast cancer and ACC’ The ACC surgery was huge and removed a third of my upper jaw bone and palate. I also had head radiation every day for a month.

I returned to Australia for chemo and radiation for breast cancer. A kind friend let us stay in their ‘very rustic’ beach cottage/shack for the next few months while I had treatment. We survived without internet or unsealed walls but also very grateful to be just behind the sand dunes from a beautiful beach. It was a very healing place to be.

Then in 2019, ACC returned which also needed a major surgery. I healed well and all was good for a while.

In September 2020 I had some weird tingly feeling above my eye which I thought was nothing, but I asked my doctor about it at a regular checkup anyway. A scan was done, and a 3cm long tumour was found behind my eye. ACC was back again, Stage IV incurable and inoperable. I was 43 with a 9 year old son and had been cancer free for almost two years. Three doctors told me the same thing; ACC had metastasised again and if I had treatment I would have a year to live, at most. The surgeon told me the tumour behind my eye was inoperable, go home and get my affairs in order, and to work out what would happen to my son. The radiation oncologist told me I could not have radiation as it was too risky. The area would overlap with my previous radiation and would likely cause necrosis to the part of the brain closest to the tumour. My medical oncologist suggested chemo, but none were quite right. I said no to chemo because I knew how sick it would make me and I didn’t want to go through that again. I decided to wait for a clinical trial to go on, while making a lot of lifestyle changes.

n February 2021 I was lucky enough to land a spot in an immunotherapy clinical trial. Even though the tumour remained stable, my eye started to lose function until it wouldn’t open or move at all, so I was then taken off the trial in February this year.

I have not been on any kind of treatment since then. My oncologist has just found something that might work off label though which is very exciting, a targeted therapy called Lenvima, which I am starting next week. I’ll also be starting daily Mistletoe injections.

I am still living in Australia, near the beach but not in a shack. My son is now 11 and homeschooling, I have taken up photography, volunteer as a photographer for a wildlife hospital and have learned how to grow my own vegetables. I'm loving walking my rescue greyhounds every day. I’m happy and feel healthy, even though I still have a 3cm tumour next to my brain.

If there’s anything you would like to ask, AMA! I will be available for the next couple of hours so I will try to answer every question until then.

Edit 1: Wow thank you for all the questions! Keep them coming! I need to take breaks because my one good eye needs a rest from the screen occasionally, but I will get to them all. :)

Edit 2: I'm going to take a break now but I'll come back a bit later to answer any more questions. :)

Edit 3: Thank you everyone for the thought provoking questions! They have made me reflect and think about the past year (and more) in ways I wouldn't normally. I'm signing out now but will check back in over the next few days to read any more questions and comments. Thank you again!

Proof: https://imgur.com/a/H99ExUy

Comments: 324 • Responses: 75  • Date: 

Chenille_627 karma

Are you afraid of what happens when you go? And how have you prepared your son for this. It must be very scary for all of you, my heart and well wishes are with you and your family. Hugs from an internet stranger.

WalrusKooky75151744 karma

Thank you, for asking this question. I have prepared as much as possible, writing a will with a lawyer and detailing as much as possible for the care for my son. To prepare him emotionally is the hardest part. It would be just devastating for him if I died while he was still so young, or even as a teenager. We have pets which makes talking about death a bit easier. Recently one of our quails unexpectedly died and he was the one to find it's body. He was distraught, and could not stop crying, he was just so upset. He asked me "Mum, how can I feel better?" and I told him that the only way to feel better when you are grieving is to just feel fully sad. Cry. Cry and cry, let it all out until your body feels relief and then you will start to feel better again. I'm hoping these small lessons help him in the future.

IceDragon77574 karma

My mom passed from cancer when I was 18. What I didn't know was she lived 7 years past her terminal date. I just remember her getting really sick really fast.

I wish I knew. I wish I made things easier for her. I wish I said "I love you" more.

WalrusKooky7515327 karma

I'm so sorry to hear about what you and your mum went through. That's quite amazing that she lived 7 years beyond her prognosis. Telling children is such a difficult decision to make. I don't know your mum but I'm sure she was a very strong woman to go through what she did. Maybe she was protecting you, and she didn't want you to worry. That was one of the things I though a lot about before telling my son, how I wanted him not to spend his childhood worrying. It's difficult. Us mums can feel the love, we know it's there even if the words are not said much. Big hugs. x

IceDragon77155 karma

Thanks for giving me the other perspective, I appreciate it a lot.

Also I wanna thank you for sharing your story. I have the same cancer that took my mom, and February I was told I have 1-2 years left. Hearing about people who live past their "expiration date" definitely makes me feel better about my situation.

Any tips for dealing with the stress and anxiety? I noticed my I've found it hard to make myself eat.

WalrusKooky751587 karma

Oh so sorry. One of the things I started in the beginning was hypnosis. I needed my brain to think positively about it and stop the stress and anxiety. It really helped, and my hypnotherapist recorded sessions so I can listen to as I need the . I also found some good hypnosis recordings on YouTube which I listen to every night when I go to bed. Also counselling or psychologist sessions helped a lot too. Il also on anti depressant meds which help me. I’m not sure what can help you boost your appetite though, but it’s important for you to eat as you know. Maybe ask your doctor if there’s something they recommend for that. x

SignificantWarning5253 karma

I'm just out of words. I don't know what to say. I'm glad you're still among us.

WalrusKooky7515219 karma

Thank you x

Rebelmermaid13 karma

As someone who lost their partner to ACC while pregnant, please make videos of you and your son, talking/laughing just being you guys! I miss my partner everyday and wish I had more videos of us. I have lots of photos but videos would of been amazing to show our child.

Thank you for sharing your journey especially for others who have ACC, I hope your sharing paves the way for more research into head and neck cancers!

WalrusKooky75152 karma

I'm so sad to read this, ACC can be relentless. I'm so sorry for your loss. Videos are a great idea, thank you.

Yes, we definitely need more research. Rare cancers are so underfunded.

Mymarathon154 karma

I wish you and your family all the best. I am so sorry you are going through this. I can not imagine what you are feeling. Or I can but I might be wrong.

May I ask, why did you have surgery I Thailand and then chemo in Australia? Are you from australia?

WalrusKooky7515198 karma

Thank you, my private health insurance stopped covering me while I was in Thailand. I am Australian so I moved back so I could have chemo for free.

JimmyMack_5 karma

Why were you living in Cambodia/Thailand?

WalrusKooky75157 karma

I was teaching first grade in a school for disadvantaged children in a poor village just outside of the tourist city, Siem Reap.

anth0nyf132 karma

glad to read that you’re feeling happy and healthy! what are the names of your greyhounds? :)

WalrusKooky7515138 karma

Thank you! They are Snowy, Patsy and Nez :)

Thirdtwin125 karma

How do you feel about yourself? Do you see things in a different perspective after all this?

WalrusKooky7515299 karma

I feel so much better about myself now than before cancer. I have gotten rid of all of the stress in my life, set more boundaries, try to practice mindfulness and meditation. Slowing down has made me appreciate what I have so much more now, my son, family, friends, my dogs. I feel like a different person really.

FroYoBroHoe104 karma

Hi! 👋 The world is so glad you’re alive! After the operation that affected your jaw bone and palate, did you participate in speech therapy?

WalrusKooky7515118 karma

Hi and thank you! I haven't had speech therapy, but I think I should have. It wasn't suggested to me in Thailand but I'm sure if I had the surgery here in Australia it would have been part of the after care protocol. I have an obturator which is a prosthetic jaw and palate, and without it my voice is hardly there and sounds very hollow so I need to wear it all the time. I have worked on jaw movement and my voice myself, but I still can't open my mouth more than a couple of cm. Singing helps though, plus it's fun :D

Asksaboutducks90 karma

Do you like ducks?

WalrusKooky751568 karma

I love ducks, especially ducklings :)

Jurydeva77 karma

Is there a chance of your eye ever regaining it’s pre-treatment use/movement? Also, have you considered options for what you think you’ll want to do in regards to treating your eye?

Just want to wish you the best! I’ve had very personal run-ins with cancer and have taken care of loved ones, personally nursing them through it. Your spirit is amazing. My heart and strength is with you.

WalrusKooky751596 karma

Unfortunately not. I've just tried a course of steroids to see if my eyeball would start moving, but it didn't meaning that the damage is permanent and irreversible. I haven't really thought about what's next with the eye itself. Sometimes when I exercise it opens a little bit and I can see, it just doesn't move. I don't think I would have surgery to remove it.

subversivepersimmon37 karma

I am sorry. :( It's interesting that it opens with physical effort. My, you still find the strength to exercise! How? You are inspiring.

WalrusKooky751546 karma

Thank you. I’m experimenting with more exercise to see if it starts to help more.

EssehJupeh71 karma

I am absolutely rooting for you. And I love Greyhounds! Did your outlook on life change after the diagnoses? Thank you for answering questions.

WalrusKooky751573 karma

I love that you love greyhounds! Yes, my outlook on life changed after the diagnosis. I look for the joy now, I don't rush anymore, I say no to things that cause stress.

lukeman300066 karma

Do I have to write a question so my comment doesn't get deleted?

I just wanna say you're a fucking warrior and you should be proud as fuck of your attitude and outlook. I can only aspire to such greatness

WalrusKooky751537 karma

Awww thanks!!

sharpshruter63 karma

I’m glad you’re still here! Keep being an inspiration! I am a sucker for beach sunset pictures, do you snap scenery too, or only wildlife? Thanks!

WalrusKooky7515120 karma

Thanks! I love a good beach sunset! Here's a recent one of mine https://imgur.com/a/lpMicqE

sharpshruter39 karma

Gorgeous! Thank you!

I just made this my work computer wallpaper, thanks for making my world a little brighter.

WalrusKooky751520 karma

Oh that's so great! I'm so glad you like it!

Julius-n-Caesar49 karma

Other than getting a hug from your son, what’s the best part of your day?

WalrusKooky751582 karma

Hmmm that would have to be my daily coffee! Really though, the best part would be walking on the beach at sunset most days. :)

SignificantWarning541 karma

Have you spoken to your son about the situation? What's the plan for him if God forbid something happens to you?

WalrusKooky7515104 karma

Yes, my cancer has been a part of his life since he was 6 in one way or another. The plan is that my sister will come to live at our house and will care for him. That way he doesn't need to move and everything else will stay the same for him. I think it will be easier for him that way.

SignificantWarning540 karma

Thank you for answering. I just pray to God that you will always be there for him. Thanks for sharing your story and showing the world what a true warrior is.

WalrusKooky751531 karma

Thank you so much.

Srynaive38 karma

What words of wisdom do you have? I imagine what you have been through lends to a perspective most people don't have.

Would you consider writing a biography, solely for your son? I lost my mother to cancer, and there were so many things I wanted to know. Thinking of your son, it would be great to be able to read your words, and have that physical thing to aid in remembering. If I were him, I mean.

WalrusKooky751576 karma

I'm not sure if I have words of wisdom. Some things I've learnt over the past year are to deliberately take time every day to find joy, something to make you laugh. It makes such a difference but we get so busy that it's easy to forget this simple thing.

That's a really nice idea. A friend gifted me a subscription to a kind of biography writing thing. They send me a prompt every week and I write a story, add photos etc. Then after a year it will be published into a book which I'm going to give to my son. Only problem is I forget to write most weeks so I'm way behind.

sassyclimbergirl29 karma

My father-in-law was gifted this same gift. He chose to ignore the prompts and write about his life in ways that made sense to him...might work for you 😊

WalrusKooky751527 karma

That's a great idea. Sometimes the prompts just don't relate to me. :)

cstyves34 karma

Hi, thanks for taking time to share with us!

Do you have a portfolio or an account we can check your photos?

WalrusKooky751562 karma

Fuzk8 karma

Amazing shots!

WalrusKooky75155 karma

Thank you so much!

alliexon683 karma

Oh my god you are so TALENTED!

WalrusKooky75152 karma

thank you!

morphballganon34 karma

Fascinating story. Why is the tumor behind your eye inoperable? No good way to reach it?

WalrusKooky751544 karma

Thanks, it's in a v very difficult spot and also the shape, it's long and thin and there are parts growing on important nerves. It's too risky and impossible to remove it all.

MultiversalTraveler27 karma

To me breain cancer seems the scariest because it can affect how you think and feel. How do you avoid letting it get to you. Like how do you get past that terrified feeling that maybe one day soon your thoughts might not be completely your own?

Also as someone who has adhd I just want to say thank you for putting in the time and effort to understand your son, even with all these worries.

WalrusKooky751532 karma

Yes that is scary. The reason I am not having radiation is because of the high chance of damage to my brain. My facial recognition would have gone, my ability to appreciate music and images would have gone, among other things. I need to continue believing the tumor will not grow and do everything I can to keep it stable.

Thank you, ADHD really is complex and I'm still trying to understand it. It's a lot easier now that he's older and able to express his feelings with words, and can self regulate.

MultiversalTraveler10 karma

Of course! Adhd and autism are both hard to understand. There are communities here on reddit if you ever want to ask questions.

I don't know if you will be okay, but I hope the positivity your spreading gives some small comfort. That can't be taken away from the shelter. It can't be taken away from your family. And it can never be taken away from your son.

WalrusKooky75158 karma

Thank you so much for your kind words! I hope I am spreading positivity, we do need more of it in the world at the moment. :)

Libertinelass22 karma

Incredibly strong lady. I hope you have many more moons with us. Glad you are doing hobbies that empower you and give back to our furry friends.

I’m curious what you were up to in Cambodia? I just returned and have fallen in love with the people and culture. I’m going back soon to do volunteer work with elephants and cats.

WalrusKooky751535 karma

Thank you. Cambodia holds a place in my heart! I'm so glad you're going back to volunteer, that's a great thing to do. I was a Montessori teacher in Phnom Penh for a year, then a first grade teacher in a very poor small village outside of Siem Reap for around 4 years, teaching children from disadvantaged backgrounds.

WalrusKooky751526 karma

Oh also, a friend of mine runs a cat rescue charity in Siem Reap! Seam Reap Pagoda Cats :)

Quwilaxitan17 karma

Hello, thank you for your story! I would like to ask, do you feel like your treatment was adequate and that you were well received, or were the dr.'s like, "it's another cancer patient?" It seems like in the states there is this attitude of treating people like $$ and that's about it and it freaks me out to think of going through what you did without supporting Dr.'s

What is your favorite animal to photograph?

WalrusKooky751553 karma

I have been mostly happy with my treatment so far. I had a radiation oncologist who I didn't feel right with so I moved to a different one. My medical oncologist is amazing. She really gets to know her patients well and even called me from her home to tell me about a study she read about my rare cancer which is promising. I'm lucky to have found her though, not all doctors see patients as family in the way she does.

My favourite animals to photograph are quokkas! They are just the best!

palpablescalpel16 karma

My dad has ACC! He's currently cancer free but as you know it's such a looming type of cancer. Have you read "Relatively Indolent but Relentless" by Matt Freedman?

WalrusKooky751518 karma

Oh wow! There's not many of us, so glad to hear your dad is cancer free! Can I ask, what kind of treatment has he had? I've not read that book but I will look it up, thanks!

ImAnIdeaMan16 karma

How do you feel in retrospect about the doctors telling you that you had a year to live? Are you glad they told you, do you feel it made you better prepared or more grateful that you're alive now, than perhaps you otherwise wouldn't have been? Or are you somewhat bitter (probably for lack of a better work) and wished they had said nothing or estimated longer?

I've always been curious about this, as sometimes I've seen people say a doctor said I had ____ to live and they were wrong in sort of a resentful way, but it seems like they would rather estimate short than the other way around.

Thanks for the opportunity to ask.

WalrusKooky751544 karma

Great question. I think for me, it gave me the kickstart I needed to make the lifestyle changes I knew I needed to make but hadn't got around to yet. I was always the kind of person to leave. essays to the last minute and use adrenaline to power through to the deadline, so I guess it kind of did that for me. I can see why others would not like to know though, and if I wasn't such an optimist then it could have really been horrible to know.

I have read about the Indigenous Australian custom of 'Pointing the Bone' where, as punishment, a spiritual person will point a bone at the offender. This is meant to mean they will definitely die within a certain time. The offender then goes off alone, stops eating (probably from depression and worry), stops doing normal daily activities, then eventually they lie down and die. I think this is what doctors unintetially do to cancer patients when they say "You have a year to live." Some people believe it to be true, then they die within the time frame. One thing that helped me is that I didn't believe the doctors, I had a gut feeling they were wrong.

GeoE4612 karma

I like this Pointing the Bone punishment. It shows so well what nocebo can do to a person and that the mindset can have such a tremendous effect on psychology and physiology. This was also shown in many studies regarding sport performance and effectiveness of diets. Staying positive when things seem not so good, is a lost skill in humanity but so much necessary.

WalrusKooky751510 karma

So true. Placebo effect and nocebo effect are proof that our minds can heal or harm our bodies. Powerful stuff. And you're right, staying positive is really necessary for our health but can be hard to do. One of the first things I did after I was diagnosed last time was to find a good hypnotherapist so I could make myself think positively. It really works!

-Siphon-16 karma

First off, forgive me for being so bold but you are a badass! We're so glad to have you here and I wish you and your family the best from the bottom of our hearts. I wanted to ask, are there any good habits you've picked up on that other people should too?

WalrusKooky751521 karma

Thanks so much! Some good habits make me very boring lol, go to bed early, get 9 hours + sleep every night, eat lots of greens, go for walks, meditate. And always be kind because you really don't know what the other person is going through. :)

-Siphon-3 karma

All sound advice that I think a lot of us take for granted. Thank you for the reply, it means a lot you took time out of your day to do this!

WalrusKooky75152 karma

You're welcome, I'm finding it a great way to reflect and glad I can be of help to others at the same time. :)

skdslztmsIrlnmpqzwfs15 karma

do you have a partner (i guess the kids dad) and if so how is he coping with this?

WalrusKooky751539 karma

No I don't have a partner, it's just my son and I. My son's dad and stepmum live in another country but they are very supportive.

BukkabangSanchez14 karma

Hi, thanks for doing this AMA! if my question makes you feel uncomfortable, please just skip it! are you scared of dying? not as in you're scared for anyone else being affected by it, or not having things in order but just losing life. also, do you believe in some form of afterlife? Wishing you all the best, may your cancer just fuck off to where it came from.

WalrusKooky751534 karma

Thanks for the question, it doesn't make me feel uncomfortable at all. I'm not scared of dying. Not just because I don't believe I'm going to die soon. I'm not a spiritual person but I have listened to Dharma talks about this topic and also practiced some Buddhist death meditations, where you meditate on the fact that one day you will die, we don't know when or how, but one day we will. It's not meant to be morbid, but more to help us appreciate every day more. I don't know if an afterlife exists, but I like the idea of our spirits never truly dying.

gold4_main14 karma

Your story is really inspiring. My question for you would be -- what kind of life advice would you give to your younger self?

WalrusKooky751524 karma

Thank you, this is a good question and is making me think! Hmm.. I think I would tell the younger me to find ways to relax and stop all of the stress in my life. To spend time on joyful things. To spend more time with family and friends instead of being so busy all the time.

untitled2012 karma

Is there any advice you’d give to someone without any health issues (about any topic)?

WalrusKooky751530 karma

Great question! I wish all healthy people would look after themselves, physically and mentally. Eat vegetables, exercise and avoid stress as it's a big cause of cancer. And find the things that bring you joy and practice them daily. :)

untitled204 karma

Thanks. How do you feel about not waiting to do things one wants? I quit my job this year so I can travel and work on my business ideas because I don't want any regrets.

WalrusKooky75159 karma

Yes! Definitely don't wait. Do it now, don't wait until everything is 'perfect'. I did a similar thing in 2009 when I gave up my good job to go and volunteer in Tanzania, East Africa for a year. It was so scary but I'm so glad I did it. Changed my life.

cheese_resurrection11 karma

Favorite kind of cheese?

WalrusKooky751523 karma

vegan cashew cheese!

1_whatsthedeal9 karma

Congratulations!!! That's amazing.

How did you deal with the initial diagnosis? Was it apathy, terror or something else all together?

WalrusKooky751516 karma

Thank you! I felt disbelief. The first doctor to tell me had a very concerned look, there was a clinic nurse there as well, who I think was there to support me if I didn't handle it well. But I just didn't believe him.

mhobdog7 karma

Hello. Thanks for doing this AMA. You are an incredibly strong person and wow, so much respect for you, and sending good wishes your way.

How has this prognosis affected your perspective on life? Do you feel it’s changed how you look at things, or what feels important?

WalrusKooky75157 karma

Thank you so much. I think my perspective has definitely changed, I am much more relaxed now and see that spending time with the people I love and care about is more important than work.

Gammathetagal4 karma

You are a great inspiration.

Miracles happen and we must train ourselves to expect them... and they come somehow.


WalrusKooky75152 karma

Thank you <3

Gammathetagal2 karma

Have you been influenced by Louise Hays "You can Heal Your Life" and her overall teachings?

Dr Joe Dispenzas meditations and visualizations are truly powerful also and I have heard of amazing miracles happening from them also.

If you care to share what youtube videos and what teachings have helped you. You ate obvioysly doing something right.

Please only share if you want to. Sometimes being secretive is best for you and your health.

I heard also doing intermittent fasting and keto resets the body for great health as well. Maybe you can tell us what nutrition habits you have done that also helps. But only if you want to you dont have to share. Do whats best for you.

I heard gerson therapy works for some people.

WalrusKooky75152 karma

I'm more thank happy to share! I follow Dr. Kelly Turner's books Radical Remission and Radical Hope. The books list and describe different approaches to the 9 or 10 key practices that people who have gone into complete remission from serious cancer diagnoses.

I watch a lot of TED talks about healing, cancer, happiness, etc. I use hypnotherapy to guide my mind into a positive thinking direction, and listen to emotional releasing hypnotherapies at night. I'm doing intermittent fasting, so I stop eating at around 8pm and start eating again at around 10:30-11am. I juice vegetables but not following the Gerson therapy, however coffee enemas sound interesting! A friend says they feel great so I might try that one day too.

Gammathetagal2 karma

Thanks. I will look into Dr Kelly Turner.

What an incredible story. May God bless you and your family this Easter Holiday. 🙏🙏

WalrusKooky75152 karma

Thank you, same to you :)

Jupaack6 karma

When you lay on your bed before sleeping, what do you think about ? what comes to your mind?

WalrusKooky751510 karma

I don't think when I'm going to sleep. If I didn't calm my mind I would probably be worrying about all sorts of things. I listen to hypnosis on Youtube (usually Michael Sealey) and I fall asleep within five minutes. :)

emsmo6 karma

You seem like a really cool and inspiring person. Living on a beautiful beach, with gorgeous dogs and taking such amazing photos of animals and scenery is just awesome! You sound like the protagonist of a really good book, haha.

What are your favorite animals to work with in wildlife rehab? (:

WalrusKooky75159 karma

Oh wow thank you for the compliment! My favourite animals at the wildlife hospital would have to be the Tawny Frogmouths. They have such individual personalities, such funny birds! And the resident wombat too. And the possums. So many I can't just choose one. :)

emsmo3 karma

Oh wow just a quick google of tawny frogmouths gives such a variety of personalities, haha ! They seem fun, and possums and opossums are so adorable, some of my favorite animals!!

WalrusKooky75157 karma

They are so fun! Possums are gorgeous too. I don't know if our possums are related to your opossums, but they are cute!

delighted_tea6 karma

Wishing you and your family the best. You are incredible brave and strong to go through all that!

I am an aspiring photographer with a primarily focus on wildlife life photography, I am curious how did you get the wildlife photography gig? Something like that is what I would love to do for a living or in my spare time!

WalrusKooky75155 karma

Thank you so much. I tend not to wait as much now as I used to, so I just built up enough courage one day to email the wildlife rescue hospital and ask if I could volunteer as a photographer. And they said yes! It has been an amazing experience photographing the animals. I give them all of the photos with full use after each visit so they can use them in whatever way they like. I have taken a break from it for a couple of months, except for one day they called me and asked me to come and take photos for some large banners they are printing. Photos are a great way to help charities, good photos help them raise awareness on social media plus they can sell prints etc to raise money.

Elsbeard6 karma

I'm so glad you're still here!

Do you have a favorite song?

WalrusKooky751511 karma

Thanks! My favourite song is Feeling Good by Nina Simone! Always makes me feel good when I sing it. I also love the Michael Bublé and Muse covers.

Elsbeard6 karma

Oh I love Nina Simone too! I was just listening to that song on my way to work today! I sing it in the car all the time.

Exceptional taste. <3

WalrusKooky75155 karma

It's such a great song! x

fiveleggedslut6 karma

You said you are feeling happy and healthy, do you have any pain at all? And if not, does it scare you that someday you could be in extreme pain because of the tumour?

WalrusKooky751510 karma

No, I don't have any pain at the moment. I have some numbnness in my face, but that's all. I've never envisioned being in pain in the future so I can't say I'm scared by the thought of it. I have felt terrible pain after one of my surgeries in hospital but that was controlled with a button I could press which sent a dose of some strong painkiller into my system. I'm guessing that's what will happen again if I do experience high levels of pain.

Groundbreaking_Air766 karma

What makes you the most happy at the moment?

WalrusKooky751513 karma

Right at this very moment, watching my son jump on the trampoline, seeing my guinea pig enjoy grass and the afternoon sunshine and listening to my favourite songs are making me happy. Just simple things really. Other things that make me happy are singing while I make juice or meals in the kitchen, walking to the beach alone at sunset for some time to reflect on my day. :)

Jealous_Ad58495 karma

Wow - this is a remarkable story. I don't know what to say but I wish you the best of luck! What drives you to continue on?

WalrusKooky75156 karma

Thank you! I guess a lot of things drive me to continue on, number one being my son. I'm always planning things to get excited about, like camping trips or photography days. Having things to look forward to really helps!

Zonerdrone5 karma

If you had the option would you consider physician assisted suicide?

WalrusKooky75159 karma

Only if I was intensely suffering in pain and had no chance of survival.

Gibodean5 karma

Greyhounds are noble animals. What would you say is the best thing about them? That they are skinny and sleek, or that they have a beautiful snout?

WalrusKooky75156 karma

I can't just choose one best thing about greyhounds. I love their shape, their snoots, their derps and the way they are funny and make me laugh. I also love their ears. :D

redfragle5 karma

Have you watched ‘the magic pill’ ? I found it fascinating, worth a look if you want to.

WalrusKooky75153 karma

I haven't seen this, but I'll look it up,. Thanks!

thetagangbang5 karma

What is your biggest regret in life? What wisdom would you impart for us?

WalrusKooky75157 karma

This is a really great question, and I'm trying hard to think of an answer. I'd like to say I don't have any regrets but I feel like that would be a bit selfish. I regret not spending more time with my grandparents before they died, I really miss them and wish they had the chance to know my son.
I don't know if I have any wisdom to share, except maybe to slow down, try not to be too busy for friends and family.

V_7_4 karma

Could you explain more why it's unoperable? Is the risk too high you would die during the procedure? As someone with no clue I would think it's better to just cut all out than die.

And just one thought for you: It's better to have a great mum during your childhood than having shitty parents for 40 years.

All the best for you!

P.S.: Did you also research new international method trials directly going towards the tumor?

WalrusKooky75156 karma

Good question. The tumour is located way back between my eye and the skull base so it's difficult to reach, and also it isn't a neat and tidy ball shape, it's long and narrow and has these kind of 'strings' coming off it if that makes sense. It's also wrapped around important facial nerves. It would be a very risky surgery to remove it and it would be impossible to get it all. I told the surgeon I would be happy to lose my eye if I had to, but it still would be a very risky surgery for no benefit if it wasn't all removed.

Thank you for the thought! That's a great way to think of it. I really hope I'm a good mum.

WalrusKooky75155 karma

P.S.: Did you also research new international method trials directly going towards the tumor?

I'm always looking for reports and articles about ACC, there aren't that many studies done on rare cancer though. I haven't heard of any trials like this yet.

NotARedditorISwear94 karma

Glad that you're still alive.

What's your favourite food?

WalrusKooky75157 karma

My favourite food is dark chocolate. :)

Bandit68884 karma

Truly rooting for you to get through and that the Lenvima does help in anyway it can so you can spend more time with those you love and the things you enjoy.

I suppose if I have to ask a question, it would be have you thought about making a video for your son? Like I dunno about your favourite places, things you've done in your life, even a recipe.

WalrusKooky75155 karma

Thank you! I'm really excited to start on Lenvima, and hoping it's going to work!

A video would be fun to do, thanks for the idea!

jarfil3 karma

I said no to chemo [...] I’ll also be starting daily Mistletoe injections

Isn't Mistletoe just a light version of chemo?


WalrusKooky75157 karma

Thanks for the question, mistletoe and chemo work in different ways. Mistletoe is an immune system booster. It does a variety of things like give extra energy, and it also boosts white blood cells especially T-cells which are the kind that kill cancer cells. Chemo kills cancer cells directly, but also a lot of good cells and suppresses the immune system.

timberwolf01225 karma


It looks like it improves quality of life but is recommended for treatment of cancer. In all cases there is a lack of evidence and the studies that have been done all have flaws that reduce their veracity. Really we need proper medical testing to fully understand if this is an effective treatment

WalrusKooky75157 karma

More medical testing would be great. I'm trying it as it doesn't have many bad side effects, and my options are really limited. I'm kind of at a desperate stage where I am willing to give anything promising a try.

timberwolf01226 karma

I absolutely empathize with your position, I really to wish you all the best.

WalrusKooky75153 karma

Thank you :)

Fernxtwo3 karma

What's your favourite potato based dish?

WalrusKooky75154 karma

Baked purple/black potatoes!

Calvertorius3 karma

Being originally from Australia, how did you end up living in Thailand? I’ve often thought about moving to another country but haven’t figured out how it could happen.

WalrusKooky75153 karma

Moving to another country can be a great experience! The first time I moved countries was in 2009 when I moved to Tanzania for a year to volunteer. Then when my son was 2 I went on a trip to Bali, Thailand and Cambodia. While I was in Cambodia I visited a small school and was invited to work there as a teacher. I said no to begin with, but after I arrived back home I realised what a great experience it would be so I contacted them and told them I was coming back and would take the job if it was still available. It was., so I sold things and packed up some things to put in storage and booked the flights. I was only going to stay for a year but I ended up staying almost 5 years. If you want to do it you will find a way to make it happen. Good luck!

DaBi5cu1t3 karma

Have you been a bit more care free? You've cheated death for 2 years! Do you feel like you can take more on in life now than you did then?

WalrusKooky75152 karma

Funnily enough, no! I used to do crazy things like travel alone to developing countries, take boats without wearing life jacket, drink alcohol (not on a boat lol), fly on those tiny planes that wobble in the air, I've even walked across tall rickety wooden bridge over a river in Africa and used to ride a motorbike in Cambodia in the crazy traffic. Now I'm more likely to think about safety and do the more sensible things. I feel like if I'm working so hard not to die from cancer, I don't want to die from anything else either.

Definitely_wasnt_me3 karma

Why are you homeschooling your son?

As someone who experienced this, it had a severely negative impact on my social adjustment and my ability to operate in many environments.

WalrusKooky751514 karma

I'm sorry you had this experience. I'm homeschooling because my son has anxiety, ASD and ADHD and finds it very difficult to learn in a classroom environment. Also it's much calmer at home without the stress of getting ready for school on time, and the inevitable afternoon meltdowns. He's so much happier now. He goes to a small drama class every week, goes out with a support worker twice a week, and he still has friends who we see all the time. Plus we really enjoy being together and going out to different places. He's doing so much better now in all aspects, including socially.

StressAssassin3 karma

So does the expression of emotion like when I say to you, I'm so sorry that you're having to endure this kind of hardship, does that "feel" differently than it did before? Like you find the inner-scales that weigh everything...have they become profoundly different in your journey?

Continuing to persevere and moving on with your life as you have, does it seem as if your making decisions now for everyone else around you, like your son and his wellbeing, or is it focused on you getting better, and focusing on your small victories, given the time you didn't account for personally? So many things go would go through my mind in your situation. I will you well, health and happiness from here on out to the last, that's for sure.

WalrusKooky75152 karma

I think it's hard for people to understand how it feels for me. I think sometimes they project how they guess it would feel for them onto me, assuming it must be something to endure, or a hardship. Instead it's more like your second paragraph for me, I'm focused on wellness and happiness. celebrating victories and having fun.

Thank you for the great question, I hope that answers it ok.

keepingitreal02 karma

May I ask what kind of scan they did? I have been ignoring a warm sensation under my eye this past year.. although I recently had eye exams and a brain mri

WalrusKooky75152 karma

I had a head MRI. I hope you find the cause of the warm sensation soon.

TansenSjostrom2 karma

I have a question... Can... Can I see the doggos!?!? asking for a fren.

WalrusKooky75153 karma

Of course! They are on insta :) https://www.instagram.com/snowytheschoolgrey/