Teenage cancer survivor. AMA.

[mishfish]

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

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).

I do have a blue badge and avoid using it specifically because I’m scared of being told off for misuse as I am young (and look very young), with kids and do not look like someone with a disability when I’m going about my every day business. I worry people will think I’m pretending to limp so often it’s left in the dash board. I don’t believe it’s up to the public to police whose misusing blue badges. I do sometimes see someone who doesn’t look disabled but wonder if they have a hidden disability like myself and were brave enough to use their 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.

That is really frustrating but you really do not ever know. I’m imagining myself out with my nan and needing to pop into the shops for something and someone in the distance thinking what you have suggested here.

@DairyMilkisEvil sorry if I sounded harsh there. I am honestly terrified of using mine because of those sorts of thoughts. Not a single person I know knows I am in receipt of PIP either

I’m fine now - was a bit scary for a while as I had liver mets but now 7 years post treatment.

It’s interesting to read where someone else is at.

The blue badge thing terrifies me, I recently got one ad I have a lot of pain from surgical damage. I’ve had some nasty looks but thankfully no comments yet.

mishfish

Please don't be terrified to use your blue badge. It's no ones business. People can be very quick to judge but you should put your health needs before worrying about these people.

Do you think having cancer so young has changed how you think ? Like do you worry more about everything or maybe the opposite ?

I know I am being unreasonable! Just needed to vent. I do understand what you mean. My life is hard enough without other people making it harder and sometimes it gets a bit much, and I think we all know that there are a good proportion of people who do misuse the blue badges (eg the builder who ran out of Tesco's to his van the other day, which was parked in the only blue badge space)

Do you think having cancer so young has changed how you think ? Like do you worry more about everything or maybe the opposite?

I think the cancer and being a young single mum was the making of me really. It grounded me and made me make some really sensible decisions that I may not have had otherwise. I suppose it gave me a purpose.

I do worry about leaving my children young but I counteract that by having a life insurance policy in place meaning they’ll be financially ok if I were to for whatever reason. I worry about their health but remind myself that childhood and teenage cancer is very rare and I know many other survivors aside from myself (and sadly lots of friends who are not here today). I worry about austerity and the NHS so I buy OTC where possible and try not to drain their services and put a career path in place for myself which would mean I’m hopefully able to support myself financially regardless of my family situation, and plan to one day extend it to help others who have been in a similar situation.

I think what I’m trying to say is I’m aware and worried about the realities of life and try to take practical steps to protect myself if anything bad were to happen.

I’m not too fussed about my appearance as this is such a minor part of life, I like to focus on my brain, my health and my karma and I think these are important. I was quite shallow before thought I was the bees knees

*I’m fine now - was a bit scary for a while as I had liver mets but now 7 years post treatment.

It’s interesting to read where someone else is at.

The blue badge thing terrifies me, I recently got one ad I have a lot of pain from surgical damage. I’ve had some nasty looks but thankfully no comments yet.*

Did you need chemo for the mets? Did they appear after the initial treatment or when/during diagnosis or treatment? The main pain I experience now is through surgical damage, I sometimes get muscle spasms and my entire leg tenses and it is agony but no matter what I do I can’t release the tense

I know I am being unreasonable! Just needed to vent. I do understand what you mean. My life is hard enough without other people making it harder and sometimes it gets a bit much, and I think we all know that there are a good proportion of people who do misuse the blue badges (eg the builder who ran out of Tesco's to his van the other day, which was parked in the only blue badge space)

I wish there was more understanding of the fact that what may be ‘just quickly running in’ for one person means that for someone who parking further away is not an options means they they literally can not do what they set out to do when they left their house.

@DairyMilkisEvil I just realised I haven’t asked any you needed yours done?

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

Thank you so much. Is your daughter still receiving treatment?

Yes, so I had two main tumours, then it was on the surface of most of my organs but the liver stuff wasn’t spotted st that point. Surgery those and they shaved it down, I had 3 x chemo but it continued to grow. Liver surgery in the January which confirmed it was malignnt (the tumour was a mix of both) then more chemo and stem cell harvesting. Then 2 x high dose with stem cell rescue. Then another relapse, the surgery again in the January showed it was benign (miraculously).

How long were you in treatment for? Did chemo go smoothly or did you have lots of bumps?

Also who is your life insurance with? I can’t even get travel insurance from mainstream insurers.

How long were you in treatment for? Did chemo go smoothly or did you have lots of bumps?

9 months in total. I got every infection going when I was neutropenia, including c diff 😐

Each cycle was 5 weeks long and there was 8 of them

Week 1: cisplatin intravenously for 48 hours alongside doxorubicin for 72 hours (maybe it was the other way around?)

Week 2 and 3: ‘off’ where I would inevitably get a temperature and infection with the neutropenia and end up back in hospital

Week 4: methotrexate for 6 hours and I couldn’t leave hospital until it had cleared (usually 72 hours)

Week 5: as above

Then back in hospital for week one the Monday after

I was anaemic, neutropenia, had c diff, staff, strep, mouth ulcers, my fanny was falling apart, ulcers up my bum, ulcers covering my mouth and down my throat, hallucinations, nausea... it was endless

Sounds familiar - did you lose any hearing from the platinum?

Sounds familiar - did you lose any hearing from the platinum

No thankfully!

Sorry- life insurance is with Aviva but it took over a year for the policy to be accepted as I was waiting on results, then surgery etc.

When I travel I usually go with Freedom travel insurers