This is really for child cancer awareness and Oestreosarcoma awareness!

(This was done yesterday and will be my last AMA regarding the journey)

Proof! -

Proof! -

I will try my best to answer as much comments as humanly possible!

Our fundraiser for more proof! -

Verification -

Comments: 126 • Responses: 32  • Date: 

marine330093 karma

So, you're saying you kicked cancer's ass so hard your leg went with it? Awesome! Keep on keeping on.

squidzrule31 karma

Haha that's one way to put it, thanks! :)

Saotome8435 karma

Have you ever heard of Terry Fox?

TL;DR: He was a Canadian marathon runner who lost a leg to cancer. Taking it as a challenge, he attempted to run across Canada in 1980 to raise money for cancer research. His cancer came back before he could finish, but he is known as a Canadian hero to this day, and people continue to participate in "Terry Fox Runs" to raise money.

squidzrule4 karma

That was actually a really interesting read, thanks for that :)

fuckbeingdepressed28 karma

What went through your mind first when you learnt you had cancer?

squidzrule40 karma

Well, we were all sitting together (me and my mum and dad) were waiting in a cubical for them to tell us what's up with my leg, once they told us the nurse said "I'll let you have some time alone" and we pretty much just broke down for an hour.

fuckbeingdepressed11 karma

Fawk man.

When did this happen to you?

squidzrule31 karma

Last September 26th 2014 when I was 16, only just 3 weeks ago I was given the all clear!

millamusen16 karma

Did you ever fear losing your life?

squidzrule19 karma

Well I've been suffering through depression for some years now and I will admit that the whole thing really put me to my lowest I've ever been

millamusen9 karma

I'm so sorry to hear that. It's a terrible disease. Do you feel like you're getting back on your feet now that you've kicked it?

squidzrule12 karma

Yeah feeling better than I did, not great but better!

adrenal_out11 karma

Hi, so... how is your walking going? Also, I can't quite tell because of your socket but are you an above knee or hip disarticulation? (I am a double below knee... just curious)

squidzrule22 karma

That sucks man :( Yeah I've been amputated above knee, as for walking though I haven't really done much since like March (I think) obviously I've been using crutches ect but no prosthetic since then. We are currently just building upper body strength and stuff.

A prosthetic over here that allows me to do what I could do when I had two legs, like run, walk normally and ride a bike costs £30,000 ($46,047) and we've currently raised like £8,000 since June! So we still have a way to go for that.

literocola4317 karma

Dang your insurance doesn't cover a prosthetic? Do you have a crowd funding site set up?

squidzrule19 karma

Yeah we do! :) Edit link:

Iced_TeaFTW15 karma

Fixed link for you for easier access:

squidzrule2 karma

Awesome thanks! :D

adrenal_out6 karma

I am a lady, but nah, it doesn't suck too bad. Anyhow, you should check out Challenged Athletes Foundation... they are based in the US but I know they have funded several people from other countries for limbs that allow them to be active again! They have an open grant period every year where people can submit applications. I am sure you will build your strength back soon enough. Congrats on kicking the cancer to the curb :)

squidzrule3 karma

Thanks! :D I'll check it out!

PinkNoodles1 karma

Also check out Josh Sundquist. He lost his leg to childhood cancer, and was a Para Olympian skier. He also wrote a book called "Just Don't Fall"

squidzrule1 karma

Okay cool, I'll check it out :)

Lefthandedsock3 karma

You're speaking of £. I thought that your government had standardized healthcare?

squidzrule16 karma

The NHS can provide a limb, but it's extremely heavy and takes 2/3rds off my energy to use (which means I won't be able to run for a buss and will need constant rests) and also I need an holster to wear it.. When we saw what it was like we were very disappointed (since the doctor before the amputation told us that limbs are so great now and you can run and ride a bike ect) but didn't tell us the cost for a limb that can actually do that which made us quite upset :(

cmonguysimatwork10 karma

Was there anything you did to keep in good spirits on the toughtest days?

squidzrule18 karma

I don't really know tbh, I often watched films and drew in the hospital. When I was at home I just went and spoke to my friends. :)

msstark7 karma

How did you find out about the disease? I mean about symptoms, etc.

Also, do you have periodical scans or something like that to make sure it doesn't come back?

squidzrule10 karma

Yeah I did have symptoms, basically it was extremely painful, at first it started with just a simple muscle pain type feeling, then in just a week or so it became almost unbearable! I couldn't stand on it, I was waking up in the middle off the night in pure pain, I couldn't even straighten it! We went to the doctors 4 times before they X-Rayed it and even went to physio!

Edit: I forgot to answer the second question, woops! Yeah every few months we go back for tests and keep doing that for about 5 years!

iamspartasdog3 karma

4 fucking times before an X-ray? So, uh, how do you feel about the NHS?

squidzrule3 karma

Was pretty annoyed and angry at first but then again it is a rare disease. After we were diagnosed they were great! The hospital staff, the charities and everyone else involved with my treatment did a fantastic job and I couldn't be any more thankful that they managed to cure the cancer! So I couldn't really be angry towards them. Hopefully sarcoma cancers will be easier to be spot once enough awareness has been made about them in the near future!

iamspartasdog3 karma

I had and beat adenocarcinoma of the colon after being (mis)diagnosed with Ulcerative Colitis. I lost my entire large intestine, rectum, appendix and gall bladder all in one surgery, but luckily they found it quickly. I feel you on them being able to spot it early.

I was just having a discussion in another thread about PET scans. Did you ever have one? I just learned that in 2006 that Canada didn't have PET scans available, and that was foreign to me, because the day after having a CT scan, I was sent for a PET. I'm in the U.S.

Also, I bet we feel the same way about cunts who say "at least you're still alive", or "at least it wasn't [insert disease here]". I've never felt so ferociously violent in my life, as I did when someone would make some stupid fucking comment trying to trivialize or compare things.

High fucking five for kicking it's ass. Although I'll never know what it's like to be missing a limb and being viewed as "visibly" disabled by society, I do know the defeated feeling that comes with having the diagnosis and having parts of your body taken from you.

squidzrule3 karma

Damn that's, well I don't know what to say but fuck cancer and Congratulations on fighting through it!! Yeah it's a bit unsettling when you notice some people staring at you In the corner of your eye. When I am walking again hopefully it won't be noticeable!

TastyBurgers146 karma


squidzrule3 karma

That's sad to hear man :( But yeah I agree, just keep a good spirit up and try to remember that you will hit that peak of the mountain so the only way is back down! :) Hm the battlefront beta, yeah I thought it was pretty sweet and really enjoyable! Though the Empire do seem a little OP..... Or it could just be me being absolutely terrible at the game :P

AndoFloyd4 karma

A girl from my high school class lost her leg to cancer as well at the age of 17. Of course the hardest part was for her, and it was also strange for all of us in the rest of the class to know how to approach the topic, and how to behave in certain situations. She was very strong, though. It never seemed like she was even bothered by it. I was always (and I still am) so impressed by her strength and ability to keep going strong. Just wanted to tell you that she is healthy now (almost 10 years later) and is living a normal life.

Keep up, stay strong. I guess my question is: how would you prefer people to approach the topic of you loosing a leg? Would you prefer it not really being brought up, or would you rather people ask about it?

squidzrule4 karma

Wow that's awesome to hear she does seem really brave and congratulations to her! :D

Well to answer your question, I ain't to bothered tbh (if people are actually curious and ask, I will tell them!) I will also tell them how I was diagnosed so that maybe if they are having a similar situation to me they can see a doctor a lot sooner than I did. Also from now on to the day I die, if I have pain which I cannot explain for longer than maybe 3 days I'm having it checked no matter what!

Jamerman3 karma

How did you get diagnosed?

squidzrule7 karma

Story time! Oh god well basically out of the blue I was on my computer and I noticed a slight pain in my left leg being the "not concerned about anything individual" I just dismissed it as a random pain, it wasn't until 2 days later that the pain was still there but not only was it still there but it was getting worse, really bad at a quick rate! So I told my dad "hey dad my leg feels weird and it's getting a little to bad to just simply ignore" So the day after I went to the hospital. At this point I couldn't walk properly, I was naturally limping everywhere since standing on it was pretty bad. We were waiting AE for about 6 hours before they called us up, the doctor looked at my leg, asked a couple of questions and came to the conclusion that it was muscle pain so take some paracetamols. Obviously this didn't work and now the pain was getting sooo intense I couldn't straighten it, I was begging to wake up in the night in pure agony! Sooooo we went to the doctors again! And they said the same thing and gave me more paracetamols and requested us to have phyiso! So we did, went to the physio, she looked at my leg (which was swelling at this point) and told me to straighten it and have this heavy bag of ice on top of it for ten minutes... (You can imagine how badly that fucked my leg up) So for the last time we went back to the doctors (which is almost a month later from our first time to the doctors) And guess what the doctor said? "Have some paracetamols!" But my mum demanded that we get an x-Ray, which she agreed to give us. Few hours later we got a call to go to the hospital and that its urgent. TL;DR - experienced random leg pain, got worse and worse (even started to swell up) and started to wake me up in the night, standing or straightening it was almost impossible!

ts1392 karma

What helped (or helps) you deal with your condition the most?

squidzrule5 karma

I'm not that sure tbh, I think just accepting the fact that this is my life now and it can only getter better from this point on. Also speaking to friends and continue being myself. Sorry if the answer seemed pretty lame but that's the best way I could put it.

_La_Li_Lu_Le_Lo2 karma

Yay you got it half price!

A lot of people find it costs an arm and a leg to go through the medical treatment.

In all seriousness though, how has losing a leg affected you mentally? Do you experience any phantom limb symptoms?

squidzrule5 karma

Haha :) Did I have phantom pain? Oh you better believe it. After the surgery I didn't have it for at least a week, but once i started to experience it, it got really bad really quick. In fact still to this day I'm still on medication to not experience it (and I had the operation in January!

Oh! And another thing to note is that you can feel like you can still move your toes (but of course no matter how hard you try, you can't...obviously)

BrachiumPontis2 karma

I'm sure your doctors have told you this, but, over time, your brain reclaims the parts of your sensory and motor cortices that corresponded to your lower leg. It takes time, but the pain and "sensation" should decrease a lot.

squidzrule2 karma

Yeah they did tell us that, and the medication I'm taking now is no where near as intense as it was a few months back so it's good that I'm slowly coming off it!

malesolomon1 karma

What was your favourite part about having cancer?

squidzrule1 karma

My...uh, favourite part you say? I don't think I have a favourite part, maybe if I had to choose it could be the new friends I made in hospital possibly?

Mackinstyle1 karma

I'm freaking out about a dentist appointment and just read this headline.

Do you think you'll now have a higher standard for things worth being worried about?

squidzrule3 karma

No probably not :P I'll still be scared of the least scariest things, because i have to do a PowerPoint in front of my whole class soon and that feels like its going to be the most terrifying experience!

McMagik1 karma

When you were diagnosed, did anything big change in your personal life? (ex. religion, bucket list, etc.)

squidzrule2 karma

Don't think so tbh, except that I think i did become a bit more religious during and after the whole thing.

gpz500s1 karma

Will you be dressing as a pirate for Halloween?

squidzrule3 karma

Oh If only I had a spare wooden chair leg and a parrot lying around! D:


This is maybe a poor question to ask, but do you get to choose what type of prosthetic leg you have? It seems like theres such a wide variety. How do you decide?

squidzrule1 karma

Yeah you do have a choice but I'm not sure if it's different here as it is in the US. For example over here the NHS can provide a limb but it's very bulky and heavy and would take 2/3rds off my energy jus to use the damn thing. Then there's a leg called a C leg (one we're trying to raise money for) which allows you to do essential stuff like running for a bus or being able to walk a longer distance without it being to exhausting but they ain't cheap! And there's a leg even better than that but it costs like double! I think the difference from that one to the C leg is that it's a lot lighter and more flexible (I think, don't quote me on that)

Flippedfoot1 karma

Congrats, I beat it 5 1/2 years ago, it gets better trust me. How are you adjusting to the new leg?

squidzrule1 karma

Congrats! Glad you're doing okay! :D

Regarding the question, yeah unfortunately haven't got one yet, still doing phyiso and stuff to build up my upper body strength ect!

The picture is me on a training leg back in June? I think.

Flippedfoot1 karma

Got ya it took about a year for me to walk without assistance after I got my leg. How long was your chemo and such?

squidzrule1 karma

Well I first had my chemo treatment in October of 2014 and finished in July of 2015 (I had 18 sessions off it))

acrylicdiptych1 karma

How long ago was the surgery and what's the adjustment been like during that time?

squidzrule1 karma

Around early January (was supposed to be Christmas Eve but I had a really bad infection during that time). Well I've had the amputation for nearly a whole year now and I've kinda just accepted the fact that this is it now. Once I do get a prosthetic leg hopefully I will feel sort've normal again! I've talked about all the phantom pain that came with the operation and that I'm still on medication to treat it.

SilentlyCrying1 karma

How did this experience affect your personal relationships?

squidzrule1 karma

Hasn't changed it in the slightest. I like to think I am still who I use to be before the cancer, maybe I've changed a bit who knows :)

eyalchen1 karma

What are your Hobbies?

How the cancer affected them?

squidzrule1 karma

Well I was never the sporty type to begin with tbh, I think the only hobby it has effected was the occasional bike riding I did