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Cousin has rare cancer, only 10 people in the World have it

elizc
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Hello everyone,

My cousin has been diagnosed with an extremely rare and serious form of cancer, only 10 people in the World currently have it.

She is being treated in France by some amazing doctors, she is only 27 years old. Part of me feels angry because I know that she has been smoking heavily, drinking heavily, eating terrible foods and not exercising consistently for years, and I wonder if this has contributed and wish that she had been more consicous of her health. Although, who knows if it would have made any difference and really it doesn't matter now and I worry part of me just wants to be right or something.

She is due to start an aggresive treatment in April which includes: a 7 hour operation, radio therapy, chemo therapy and chemo therapy put inside of her. I am so worried for her. It is having a huge impact on the family (we are a big family) and it is hard to feel very up at the moment as it is such a worry. Her Dad, my uncle, can't sleep at the moment.

I am sure some of you can relate to this feeling of helplessness in not being able to help or do anything that can heal. I am here to chat with anyone and appreciate any replies or even just reading it.

Sending love and strength to anyone and everyone.

xx Elizc

  • Hello Elizc,

    I am sorry to hear about your cousin's rare diagnosis and the impact it's having on the family. We have some information here which I hope will help you to offer her support. If you need to speak to someone about your cousin's condition you can call 0808 800 4040 for free. Lines are open from Monday to Friday, 9am to 5pm. 

    All the best,

    Moderator Anastasia

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    tell them this:

    i just got out of hospital two days ago following removal of urachus and part of my bladder (rare form of adenocarinoma); i was lucky to get the treatment as my surgeon is going straight into the covid19 wards. what a saint, like all of them. i'm home again now and recovering. 

    i wanted to say that although treatment is not an easy thing, it will give you somekind of traction in your fight and as soon as you come round from the operation then know that you are now officially on the score-board... and that makes all the difference. i ain't saying it's easy, but there was something oddly satisfying to know i had it on the back-foot for a change. i reckon it this way: if there is a corner to get round then you're a bit nearer to it.  i hope that the lady and her family can see it this way because it definitely makes you feel better. 

    my surgeon can't tell me about the future yet, but that's ok, although i haven't scored the match-winner it does feel like an early equaliser if you know what i mean and that can't be bad considering. so, plenty to play for, game on!

    hope this helps; just trying to relate what i'm feeling  

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