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I think my dad is going to die.

Anna_Mazza
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I'm not sure why I'm posting this. But I have no idea what else I can do. This topic is so taboo that no-one will discuss it with me, but I think thats what I need.

My dad was diagnosed with spinal cancer last year, I cant remember the name.. It's quite complicated as you'd imagine. But it's extremely rare, there were only two doctors who knew how to go about treating him in the entire United Kingdom... That was scary.

If anyone does know the name, please tell me! There was a huge report on someone with the same cancer, Jeffrey Spector, who made the descision to end his own life after being told that he may become paralysed. He was extremely brave, and I feel a strong empathy towards his family. But it confuses me how people responded so nicely and well to this situation and he got so much support. There are doctors that refuse to give my dad the basic medicine he needs to stay alive (for no apparent reason), crucial pain killers or even his 'food' Ensure, which is the only 'food' he can consume. He has been refused specialist accomodation, treated terribly and neglected in hopstials. I just do not understand how people can treat him like this.HE NEEDS THESE THINGS OR HE WILL DIE AND EVERYONE JUST SEEMS TO COMPLETELY DISMISS HOW SERIOUS AND RARE THIS IS AND MISTREATS HIM. IT FRUSTRATES ME SO MUCH.

Anyway, the effects.. The tumours had been growing in and around his spine, crushing it almost entirely, meaning he is pretty much paralysed, can no longer walk and has no sensation in most of his body. His digestive system is also entirely paralysed, meaning he cant eat and has severe bloating as a consequence of this which gets to such an extent that he can hardly breathe as it swells so badly his diaphragm can hardly move. He is in immense pain constantly, all he can do is sit around, and that is nothing like my father. I want my father back.

I have a feeling he is going to die soon, however as I'm only 15, no-one will talk to me properly, but I can tell they're scared. Everything he has left is deteriorating and he is the strongest most intelligent and caring person I know, but Im terrified that he is going to break completely as he gets physically worse as he's struggling so much at this point already to find a reason to continue and a purpose in his life as a 'vegetable'. He cant do anything himself and this causes so much distress.

Sometimes he will send me away and won't spend time with me because he cant hide his physical and emotional pain and he doesn't want to look weak infront of me. But oh god I wish I knew how long I had, Im trying my best to make the most of everyday and remind him how important he is to me.

I'm so scared.

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    You sound like you're doing the best job you can. I don't know what I can say to help but your dads cancer sounds terrible, it must be horrible to see him like this. Have you got other family members who can fight his case for him? Is he in Hospital or a cancer ward? Stay strong x

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    Hi Anna

    Really so sorry to hear about this.

    There is information about spinal cancers here that you might like to look at:

    www.macmillan.org.uk/.../spinalcordtumours.aspx

    This is another site specially for young people whose familly have cancer

    www.riprap.org.uk

    I'm surprised about what you say about his not getting the painkillers - I'm not sure about the "Ensure" this seems to be a supliment for people on tube feeding - One of the nurses might be able to explain - you can post a question on the Ask the nurses section or phone them free or email them see here:

    www.cancerresearchuk.org/.../welcome-to-ask-the-nurses

    Its very difficult to know exactly how much time you have left with him but from your description it may not be all that long. I think that when you're in pain it can be difficult having people around you even, perhaps especially people you love.

    He'll be most worried about you so try to show him that you'll be able to cope just fine when he's gone - you may not think it but you will. My wife had lost both her parents when she was not much older than you - she turned out pretty damn well and so will you

     

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    I've noticed you do lots of research on cancer too. I've found since my dad passed I've googled every aspect of his cancer possible, I'm very much a 'why' person. I think it's helped with the grief process to know more about what my dad had... It's like I try and find a cure for him even though he's not around anymore.

  • Offline in reply to GrahamM

    Thankyou. It's really comforting an helpful to hear this. Sorry, I was in quite a state writing the original post. I really appreciate the links and I'd really wanted some more information, thankyou! I'll do my best to stay strong and help him in any way I can.

     

     

  • Offline in reply to Michelle1978

    My grandma, (his carer and my guardian) is really trying to help, not much is happening. BUT! On the right side, although its taken a year, i think a charity has finally considered helping him pay for a bathroom he can use properly. And no, he tried to get a place in a retirement home, as everything is well equiped for his disabilities there, however they rejected him as he wasnt old enough, so he lives im a regular flat. And yeah, it is pretty terrible but theres nothing you, me or anyone can do. Just support him :( thankyou so much for your reply, you're very sweet. . Its comforting to know that people do care and are trying to support me. Thankyou

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