Teenage cancer survivor. AMA.

[mishfish]

As the title says. I was diagnosed with cancer before my 18th birthday. Ask me anything!

Sorry to intrude but about the dreaming/ I asked because I had a serious injury that left me with a limp, I also dream that I can walk normally.

I dream about the injury and how I used to walk, losing Mobilty so young is very traumatic . Sorry I don’t mean to derail.

*I have had a proximal femoral replacement (hip and femur) because of cancer in my femur.

The femur is a big bone to have replaced.*

Are you ok now? Mine has become loose and will need replacing eventually along with my hip (I currently only have 2cm of femur). I had to have a single stage revision of the knee in January and I was in so much pain from that. I dread to think about how the total replacement will be.

Is "Do you set off the security machines in airports" one of the questions you are asked the most?

It is for me. (And yes I do)

Can I ask whether you were aware of everything or did your parents shield you from some of it ?

If anyone reading this has a friend with cancer and you don't know how to react, then FFS be a true friend and stand by that person.

Even just a text to say ‘god that’s shit!’ Would have been better than out right blanking me!

Are you ok now? Mine has become loose and will need replacing eventually along with my hip (I currently only have 2cm of femur). I had to have a single stage revision of the knee in January and I was in so much pain from that. I dread to think about how the total replacement will be.

My leg has improved a lot of late because I've got a brilliant new physiotherapist who looks at me as a whole and treats me as a whole (so deals with overcompensation pain in the other leg for example).

It is currently all working really well.

I have lost a lot of weight and it helps a lot, I'm not sure whether this is an issue with you (don't want to be rude but it's been a real help to me losing weight).

I dread having to have a revision.

The femur being cut out is such a painful operation. I was in intensive care for a while. I don't like to think of having to have it adjusted or done again.

How did you get diagnosed? Unrelenting pain leading eventually to an x-ray??

Basically yes. I was quite lucky in the sense that it ONLY took 6 weeks to get an x Ray. It was when my knee was stuck at the angle that something finally clicked with my GP who decided to send me for an X Ray. I could tell something was seriously wrong as soon as it was done as the radiologists behaviour towards me suddenly changed and next thing you know I’m in a ward with a dr telling me I have a tumour. I had an MRI the next day, a bone biopsy a few days after that and diagnosed 1 week after the biopsy (though a call was made to me to arrange an appointment with an oncologist the day before results were given- my mum found out by me phoning her to ask what an oncologist was, because we were going to see one 2 days after results 😫) but we were officially told by the bone surgeon before meeting the oncologist

Do you drink or smoke now? the odd night out drinking and no cigarettes

You deserve a drink. I wouldn’t judge st all, (and I’m a recovered alcoholic!(

Even just a text to say ‘god that’s shit!’ Would have been better than out right blanking m

I have a former friend who I invited to stay in my house for six weeks with her husband and baby while there were building works at her house.

When I got diagnosed with cancer she completely blanked me.

When she thought I was okay again - two years later - she came out of the woodwork to say how great I was looking and would I like the link to the breast cancer care charity.

What a cow

They stole a young patient's food?! That's really shocking to be fair to him. I didn’t have family stay in hospital with me so would have a stock of food in the fridge where the other parents kept theirs. He was staying in the hospital with his son full time around cabbie shifts and was probably just exhausted and hungry and didn’t think!

Sorry if this is a thick question - I don’t understand your prosthesis comment. Is it the replaced bit in your knee? Or do you have an external prosthesis?

I have an internal prosthesis I suppose. My femur and knee are metal.

When I dream, i walk normally in my dreams and sometimes I even run. This despite the fact that I walk with a limp and cannot run at all. Do you dream as an able bodied person as well OP? YES YES YES! Sometimes I’m running so fast and light and free and it’s so wonderful and I wonder why didn’t I run more often when I was abled bodied

Helloflamingo it's a metal prosthesis inside the leg that replaces the bottom part of the femur and the knee to make it all attach up to the other bones. Then they stitch you up and you're left with a scar about ten inches long. It's an expensive bit of kit.

My tumour was quite high up my femur so I only have 2cm of femur remaining and my scar is 15 inches long (I’m very short!)

*Sorry to intrude but about the dreaming/ I asked because I had a serious injury that left me with a limp, I also dream that I can walk normally.

I dream about the injury and how I used to walk, losing Mobilty so young is very traumatic . Sorry I don’t mean to derail.*

Don’t be sorry. It was the most traumatising part for me.

Is "Do you set off the security machines in airports" one of the questions you are asked the most?*

It is for me. (And yes I do)

Pretty much yes. And it’s also assumed I can kick a football really hard because I’m ‘bionic’

Can I ask whether you were aware of everything or did your parents shield you from some of it ?

Because I was 1 month from my 18th birthday, in full time employment and very vocal about wanting to be first point of contact I was the one made aware of everything. If I didn’t want me parents to attend or know something then they couldn’t tell

My leg has improved a lot of late because I've got a brilliant new physiotherapist who looks at me as a whole and treats me as a whole (so deals with overcompensation pain in the other leg for example).

I’m really glad you’ve had improvement. I’ll admit I don’t ever go to physio as I don’t have enough time. I overcompensate with my other leg and my back is terrible.

You deserve a drink. I wouldn’t judge st all, (and I’m a recovered alcoholic!

It’s not the cancer that put me off- it’s the toddlers!

*Even just a text to say ‘god that’s shit!’ Would have been better than out right blanking m

I have a former friend who I invited to stay in my house for six weeks with her husband and baby while there were building works at her house.

When I got diagnosed with cancer she completely blanked me.

When she thought I was okay again - two years later - she came out of the woodwork to say how great I was looking and would I like the link to the breast cancer care charity.

What a cow*

It really does bring out the worst in some people.

I remember telling a friend whose dad worked in medicine and he told me ‘I asked my dad about what you’ve got and he said you’re basically fucked’

Also had another text from someone I hadn’t spoken to in a long time about 6 months after treatment finished ‘just texting to see if you’re still alive’

I’m really glad you’ve had improvement. I’ll admit I don’t ever go to physio as I don’t have enough time. I overcompensate with my other leg and my back is terrible

What part of the UK are you in? Long shot I could recommend my new physio.

What part of the UK are you in? Long shot I could recommend my new physio. West London. Anywhere near?

Do you have a blue badge? If so do you look at other people using blue badge spaces and want to tell them
off for misusing them? (I know some disabilities are hidden but am suspicious that approx 1 in 4 people using blue badge spaces are misusing someone else's badge). The worst are the middle age people who take their elderly parents to the supermarket, park in the disabled spaces with the elderly parent's blue badge....and then leave the parent in the car while they jog in to get the shopping. Argghhh. Meanwhile I can't park cos all the spaces are taken up by these lazy selfish idiots and therefore I cannot do any shopping that day.

West London. Anywhere near?

About two hours away sadly

Wishing you the very best, my dd has just turned 16 when she was diagnosed.
You've been through so much and have through it (although still on the journey) you snd other young people are an inspiration