I am a cancer survivor, diagnosed at 17 with a brain tumour.

Were you inspired to make this post by the karma kid?

No, I simply decided more or less on a whim to share my story, partly with how COVID has affected many cancer sufferers and their treatment. Who is the karma kid?

The kid that faked having brain cancer on the r/AMA sub a few days ago.

I am surprisingly unsurprised that someone would stop so low as to pretend to have a potentially fatal disease just to get appreciation from strangers on the internet...

Humanity alternately amazes and disgusts me.

Maybe that person feels really, really alone.

Very likely, but there are better ways to go about making internet friends than claiming to have an illness that has ruined so many lives. I sympathise with the emotions behind the post, but it’s just wrong to do that sort of thing.

You are absolutely right. The question is whether that person is even familiar with such ways and/or capable of using them.

I knew a person who faked illness IRL. It was basically a cry for help and she only got better with extensive counselling.

Of course we shouldn’t just abandon people who do this, but it is much more difficult with strangers over the internet than with a real person. I think there’s only so much words can do without a facial expression to back them up.

What stage is it?

My grandpa was diagnosed with a stage 4 brain tumor at 74 years old a few years ago and died like 3 months later

I'm ever so sorry to hear about your grandpa, I often felt a bit guilty that I had an eminently curable tumour when I was on the same ward as children younger than me who would never live to see their twenties. As far as I'm aware, Germinomas don't have stages as such, but are more technically a birth defect. When you are born there are a variety of cells that should be reabsorbed into the placenta or some such, but in my case a tiny bundle wasn't, and it just so happened to turn up in the right place (or wrong place depending on your perspective...). It grew as I did, until eventually it was big enough to start pressing on the wrong bits of my brain.

How did you find out you had cancer?

It was a rather long journey to discovery, actually. All the symptoms were fairly subtle, until I started getting migrainous headaches. It was one morning when my mum was giving me a lift to college on her way into her job at a hospital; I started to feel really sick, and she decided - thanks to the symptoms she had been noticing - that she was going to take me to the hospital instead and have someone take a look at me. They decided to give me an MRI to be safe, and lo and behold a tumour! Or, more accurately, two very close together, called a bifocal tumour.

What has been the most difficult part of your diagnosis/treatment?

Also, I’m glad you’ve survived and decided to do this! :)

Thank you very much! I think, as is fairly obvious, the actual treatment was probably the most stressful part. If you look at the image of my mask, that's skin tight and down to the shoulders, then add in the fact that things touching my neck is to me what touching a cat's paw is to them, and you might guess I struggled at first...

I had to have radiotherapy of the head and spine; interestingly enough, whenever I had a beam fired at my head through my sinuses, I could taste something indescribable in any way except horrible. I took to putting on Vicks vaporub before each treatment, to help with the smell/taste.

Have you experienced any lasting side effects from the radiotherapy? I understand if you don’t want to go into detail. I only ask because I’m an aspiring physician scientist who is interested in creating new treatments for individuals, I have not had personal experience with myself or loved ones and cancer so I’m just curious about the quality of life after treatment

Personally, I don't think I would be much help, as I not only have a variety of other side effects that may be caused by the tumour in the first place or the radio therapy, but also had only two weeks of high dose craniospinal radiotherapy. However, what effects it did have on me at the time were: hair loss, fatigue, nausea.

I hope for any future cancer sufferers that you develop many more kinder options for cancer treatment!

Nonsense, anything you have to say is helpful because your experiences matter. As I’m sure your physicians will tell you there is a human aspect to medicine other than the science.

Thank you again for your courage and strength. You have truly inspired me to continue further in my studies. I wish you nothing but the best!

Thank you so much for your kind wishes!

We still know so little about how this world truly works, but we're learning more all the time, and it's thanks to driven, adventurous people like yourself.

Have your view on death changed since you first got your diagnose?

My view on death hasn't really changed - that is still a very scary thought - but my view on the process of getting there is much different now, particularly having come so close to dying myself. I saw children younger than me with incurable or incredibly virile cancers. I got to know one incredible young woman who would be on chemotherapy for another 2 years at the time, while I got away with two weeks of radiotherapy. You take life as you find it, and anyone who doesn't use the brain they were given because "school is boring" or something is wasting everything they have ever been given. I was trying desperately to succeed when I was diagnosed, and had gone from mostly B and up GCSE grades to no more than a D in any of my chosen college subjects no matter what I did, and there are people out there who are capable of so much more than what they give, but can't be bothered!

Is it painful?

Sometimes, in as much as I have to inject myself with growth hormone and have regular MRIs, but I feel nothing to do with the tumour itself, only the side effects.

How are you dealing with it?

Mostly well, but all of my physical development has been delayed, so I'm still living at home, going through puberty at 22 and struggling to find a job (a task at which I had succeeded before the whole COVID mess...). I am, however, just starting on the final level of an AAT accounting qualification, so it certainly isn't all bad!

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Personally, I always felt very strange whenever someone said "you're so brave for getting through this" or something like that, because I always felt like it was something that I simply had to do, or I died. It wasn't bravery, it was being too afraid of dying to give up, if that makes sense?

I feel you, I had thyroid cancer at 18, and always feel really weird about telling people because they have this idea that if you beat cancer you are brave and tough. For me the treatment sucked, it was the worst time of my life and I needed therapy afterwards to get over it. I didn't really want to do it, but if the alternative is death, what else are you going to do?

It’s nice to hear from someone who gets it! I hope things are better for you now.

Spot on. I developed a pituitary tumor in my early 30s and have so far had two surgeries. If it grows back, radiation is the only choice.

In my case, fear of death had nothing to do with it at all. My kids were 3 and 7 at the time. I didn't really have time to waste dealing with this nonsense. I talked to the surgeon and I just bluntly told him to cut it out of me so I can get on with my life. The surgery is fairly minor - they go through your nose. I was in on Friday and out by Sunday. The neuro nurse told me that in her 10 years on the ward she had never seen a patient so anxious to get out of the hospital as I was.

You can't sit around and languish in self pity. You get the treatment and move on. You either get busy living or get busy dying. There's not really anything brave about it. I like to give people the analogy that to me, it's like I just got caught in a bad rainstorm. The act of hurrying inside isn't brave. Dealing with tumor treatment isn't brave either. You just do what you gotta do.

Respect to you, mate. You doing okay now?

You're tough man

Thank you, but - as I said to u/hotshotvegetarian - it was much more a matter of not being able to give up than toughing it out. I always felt a little guilty staying on the cancer ward, as I had it much easier than most of the other kids there! I had something that was treatable with an intense two week course of radiotherapy, they had something incurable that would kill them slowly and painfully over the next X days/weeks/months/years.

What symptoms were you showing prior to you diagnosis?

For years I had excessive thirst and urination, symptoms of a condition called diabetes isipidus which is a problem with water reabsorption, I had headaches not long before diagnosis (which are sort of what tipped us off). Long-standing tiredness and lethargy, including a lack of heart rate upon exercise (heart rate of 42 bpm walking up Snowdon, which is the heart rate of a marathon runner when they exercise, not a regular human; I am by no means a marathon runner!)

what are your ambition(s)? did a this experience have any effect on it ? what about dealing with the mental issues?

My ambition for while now has been to qualify as an accountant, which I have nearly achieved. Before my cancer I was studying to be a material scientist, and couldn’t really face going back to it after finding out why I was failing so much. Before my diagnosis of cancer, Ian sure I was depressed. While I was never officially diagnosed with depression, I was having issues with my college studies (due to cancer at it turns out) and my family were also having issues at work, which resulted in a lot of arguments about my academic performance, and created a rather toxic home life. As I said to someone else, being diagnosed was actually a bit of a high point, as it explained why my life had gone so wrong!

Damn man, may god bless you and i wish u all the best in your career.

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Have a good day.

Thank you very much, have a good day yourself

Wowza, always glad to see you've survived and are a fighter. To read through your responses to people with your goals and outlook in life.. great to see. I too had a brain tumour (benign) but we didn't know that unless I got it removed.. boy was that a scary decision, but ultimately it was either watch & wait... and see what happens, or get that sucker out.

How'd I come to find it is a whole other story in itself... I fell off a bridge when i was 19 (doing something stupid), got sent home from the hospital that night without any scans done.. completely not cool. But a couple days later went in for scans... we found a 'bright spot' but was assumed to be dried blood of sorts... anyways noone followed up on it with me and I got a "ive got two feet and a heartbeat, if it were to kill me i'd be dead".. well... 9 years later my new badass doctor saw my medical history, i had zero symptoms but on a hunch he said 'lets get you scanned up and updated'.. that bright spot i mentioned? Went from 8mm in size in 2010... 9 years later, it was 28mm. What a nice surprise to find, a brain tumour just lingering. So i got it removed, and thankfully was benign but was gr.2, with signs of mutation. So definitely a good thing it was taken out when it was.

Live on, Live strong.

That’s one hell of a story, you are one lucky SOB!

How drastically has it affected you? Last June my brother was diagnosed with Glioblastoma, in a matter of a month from the first symptoms to diagnosis he was unable to walk, or speak or anything. He regained the ability to speak until he passed away this past March.

I am very sorry to hear that, best wishes for you and all your family in such a trying time as this to organise a funeral and mourn (I was privy to the difficulty of arranging things for my grandfather last month.)

In terms of my own life, it’s affected me pretty heavily, but on the scale between what happened to your brother and a regular human being (if such a thing exists), I got off pretty lightly. I am perfectly functional when aided by my medications, but tire extremely easily.

I felt really bad before diagnosis. I had been getting migrainous headaches for a few days before, and had been tired, lacking in energy, drinking a lot of fluids and excreting just as much (thanks to diabetes insipidus) the list goes on! After diagnosis, I felt quite relieved to have an explanation for everything that had been happening (including my rapidly declining college marks, which were a source of great strife within my household...), so I was scared by having cancer, but also glad in a way.

Have you only done conventional therapy?

I have only had an intensive two week course of radiotherapy, followed by my still ongoing medication, such as Thyroxine, Hydrocortisone, Desmopressin, Growth Hormone and Testosterone.

What has been the hardest part about having cancer? I myself just got diagnosed and I'm curious.

Quite ironically, my experience with being diagnosed was (for the most part) positive, as I had been feeling awful and failing my college courses for no apparent reason for about half a year previously. The hardest part for me might have been getting through the treatment itself, as the mask is (as pictured) rather form fitting and claustrophobic. Consider lying in nothing but your pants on a table with a ridge digging into the small of your back for 45 minutes as the worst, most inescapable smell in the universe assails your senses, all the while this yellow plastic face-hugger pins you in place so no more of your brain is fried than necessary. To add to this humiliation, picture 17/18 year old me being prodded and poked into the right place whilst pinned by the mask so my spine is in line with the machine by a pair of particularly attractive female radiographers, which amounts to most of massage with much less relaxation.

But I think you do learn to enjoy whatever you can get, and - if you will eventually be cancer free - getting to say "I beat cancer" is the most wonderful feeling in the world! The one most positive thing I can say is that I wouldn't trade in those experiences, because having to get through that and come out the other side has made me more resilient, more dedicated to what I want to do in life, and less afraid to face up to unpleasant things.

Do not let this nasty f***** of an illness get you down, you can lead a functional life after all this!

Damn bro that's a lot to deal with. I thought i had it bad being it was a power and going 10 years looking like a zombie he gettin a face transplant. Once i figure out how to award this AmA im going to.

My cancer is due to the meds i take for antirejection of the organ. Best of luck to you!

Everyone has it bad on their own way, and you shouldn’t feel like you are any less deserving of recognition for your hardships than anyone else just because “your illness isn’t as bad as mine”. It’s not about one upping everyone else, it’s about sharing, understanding and making someone else’s burden just a little bit lighter.

Has going through this changed your perspective on any aspect of life in any surprising ways?

Pretty much what i said in this reply, coming so close to death and getting to come back does make you think more on life than before.

For how long did you stay "radioactive"?

Or was the amount of radiation negligible to the people around you?

There's absolutely no danger to anyone around you as far as I am aware (but obviously I'm not a radiographer...), and the only person it has an effect on is you, things like nausea, hair loss, extreme fatigue, things like that. It is by no means as nasty, IMHO, as chemotherapy. I had good days and bad days, where I was sleepy and felt a bit sick (and waking up to clumps of hair on your pillow is never a good start to the day!). But plenty of other people had it so much worse.

Do you have any permanent damage from the treatment?

Nothing really from the treatment, but I shouldn't see too much of the sun, as I have had more radiation than the average person, and melanomas are a serious risk for me. The sad thing is that once you've had cancer - and the treatments for it - you're more vulnerable to it in future. Apart from that, I have permanent damage to my thyroid and pituitary and have to take a variety of medication to compensate, including testosterone and growth hormone.

What are your hobbies and passion?

I love a good book or video game, and have actually taken up wood carving with this whole COVID nonsense giving me plenty of time off!

wood carving is really cool! I too love a good book an game. what's the last best thing you read?

In terms of actual novels that you can buy a paper copy of: Shogun by James Clavell. I terms of the "literary fast food" you can find on kindle unlimited, I really enjoyed Jay Boyce's A Touch of Power series.

whats this a touch of power about?

Have you heard of gamelit (game literature)? I would say that this book falls into that category. A young girl called Jade, who is incredibly ill and frail, finds herself transported (reincarnated?) into a fantasy world where everyone has a video game-like status screen and one ability that is unique to them. Jade’s turns out to be the ability to siphon a small portion of a persons’ attributes and one skill from anyone she makes physical contact with. She starts of really weak but quickly grows ridiculously strong, and has to explain that to those around her. Jade is a wonderfully real character, and I was aching in the chest when I read the last available book for now. Just talking about it makes me want to reread it!

haha.. that's great. first time heard of gamelit. will defined give a go if I get hands on them. and it was wonderful to know people are still reading books! it's very rare to find these people, esp. where I am from, India, most kids are into internet, netflix and youtube. keep it up buddy!

Really and truly I’m also a bit of a traitor to books, as I haven’t read a print book in months, it’s all been digital! But it does always shock me how obsessed some people can get over social media. There’s almost nothing on my Facebook account, because I don’t see the point in sharing what I had for lunch just so people give me a digital thumbs up.

exactly, we have same ideas regarding social media. me too moved to kindle now for reading. man you are one brave soul! keep it up

It’s nice to find someone else who doesn’t understand social media! Thank you for the kind wishes, life be good to you.

Hey kid, wanna play league?

Do you mean league of legends? I would love to, except I literally don't have a computer capable of playing anything without the bottom turning into molten metal...

I would love to one day finally get the money together to buy or build a gaming rig, but sadly my first job was on an apprentice wage (which is, IMHO, criminally little), so my savings are actually worse off than when I started!

How are you holding up?

Finding a job and keeping it is proving to be difficult, particularly with COVID, but I’m alright, really.

Thank you for asking!

What were your initial symptoms?

My symptoms presented over a long time (years); they started with the symptoms of a disease called diabetes inspidus (which is an issue with the reabsorption of water in the intestines, I believe), which resulted in excessive thirst and urination. I was also very tired and lethargic, and contrary to the norm, my heart rate actually went down with exercise (eg. When climbing up Snowdon, my heart rate was 42bpm; this is the heart rate of a marathon runner when they exercise, not a normal human being), non-responsive pupils, weight gain. All sorts of things could likely be attributed to my cancer, but it’s rather hard to tell as this all developed form around the start of secondary school all the way into the end of my first year of college (around 6.5 years for those unfamiliar with the British education system)

My mom died of brain cancer when I was 3 and I've always wanted to know how she felt like.

How did radio/chemo feel like? Was it painful or did it affect your cognition in any way?

Did you lose your memory or have any personality changes at any point? My mom's cancer was stage 4 and apparently she lost her memory at times. According to my dad sometimes she'd act and say things that would indicate that her mind was when she was a kid. Her personality changed at times where she'd be angrier and aggressive at times, which was unlike her. I'm assuming your cancer was caught early and you didn't have any major brain damage, but asking just in case.

I’m very sorry she died when you were so young, and I hope I can help you understand even a little.

For me the radiotherapy affected mostly my memories of that time now I look back at it. For most of my life I haven’t had a great memory anyway, probably due to my tumour, so I might simply not notice the difference?

I had craniospinal radiotherapy, and it felt a bit warm wherever they were firing the beam. Whenever I had the head portion of the session there would be this indescribably unpleasant smell, which I ended up using Vick’s vaporub to mask. I also ended up with a very neat tan line down the centre of my front and back, which has since faded.

Mine was caught fairly early, not long after I began to get hydrocephalus headaches, but about as much damage sort of death that was going to occur had already been done, but as it was pressing on my pituitary and thyroid, the damage is more hormonal than cognitive, although my ability to process multiple things at once or at speed has been quite severely impaired.

You like chocolate or ice cream cake?

Chocolate cake is nice, but I’ve never had ice cream cake, so I couldn’t say which I prefer!

Did it hurt? Or was it just feeling constantly tired? What was your family members reaction to you having cancer?

No pain at all (except for blinding headaches near diagnosis due to hydrocephalus), but apart from that I had been drinking lots and going to the toilet much too much for many years, been really tired and lost academic performance in the last year or so before diagnosis.

Me and my family were all upset (as I hope would be obvious!), but we were all relieved to a certain extent as well; it was treatable and provided an explanation for all the things that had been going wrong in my life for the past year.

hey, aren't you the kid who faked his cancer earlier?

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not trying to be rude or anything, just something i found out recently on r/memes

Understandable, but if you check the evidence link in my original post, you’ll see a letter detailing my diagnosis with my lace of personal details.

This was really unfortunate timing on my part, I hadn’t even heard about the fake cancer scandal until someone asked the same thing as you did...

Oh I see.

then I have one more question: If you manage to beat cancer, will you go back to the live you lived before, or will there be some changes in your life due to the sickness?

Already beaten! Life is very definitely different, not least because of the raft of medication I have to take. Travel is awkward, as some meds need to be kept refrigerated/are hard to get hold of in other countries etc.

What name did you give it?

If you're talking about the tumour, I didn't name them. If you're talking about the mask, he's called Damien, after the exorcist.

I'm not saying you're the brain cancer kid, but if you could provide some proof just so you can validate your post and you don't get harassed because some asshole cried wolf and now everyone is wary of cancer posts, that would be great.

As linked in the original post, see this link for a letter detailing my diagnosis (anonymised and replaced with my reddit username). Thanks for the heads up, someone else asked if I was inspired by the karma kid, and as I told them, I hadn't actually heard of them until I asked. It would appear to be a (rather unfortunate) coincidence...

Thanks man, this validates your post. Most people are on edge with the whole 14 year old brain tumour kid and this helps!

I understand completely, it annoys me to no end that someone wanted strangers on the internet to pity/sympathise with them so badly they would lie about having such a life changing illness as cancer. Now that I know about that, I sort of want this to post to be a restoration of faith in cancer sufferers too!