update on younger people with pc

[deb68]

Hello everyone, its been a while since I posted regarding my 27 year old daughter, Gemma, who has inoperable ca pancreas along with portal hypertension and associated vascular problems arising from the pc.

The update on Gem is that I still have her at home despite a GI consultant at xx hospital telling us on April 1st that she had between 2/3 weeks to live!

Gemma cannot have any treatment as she is far too frail to withstand any chemo, but we have managed to get her to a relatively stable place with only oral medications instead of the syringe driver she had before and no canulas or needles in sight!

The main problems are the depression which I know is associated with pc particularly let alone any cancer in general and the asictes building up, although it has actually been six weeks since her last drain and I am hoping they will take her in next week to do another one, as she is now beginning to feel uncomfortable and the nausea is back again.

Gemma is very weak and cannot walk too far, she is mainly sleeping most of the time at the moment although she makes a monumental effort every evening to get herself up and come and watch tv with us. Her strength and quiet determination keeps me going although sometimes I simply fall apart when noone is watching.

The other night she tried to get up for the toilet and had a nasty fall resulting in some horrific bruising to her back - my husband and I managed to get her up and back to bed but she is so determined not to have a commode and doesn't like to wake me up for help!! I have explained to her many times that I would rather stay awake all night than have her fall again, but she is a very determined young lady.

I would love to know if there were any other younger people of around Gemmas age that she could perhaps communicate with - I think it might be difficult getting her to engage initially as she is very low but she might find it beneficial. There is a distinct lack of pc support groups in the UK due to the short survival time.

I seem to have ranted on a bit but I find this site really comforting as I know that so many people are experiencing similar problems and my heart goes out to everyone who is having to live with this devastating cancer.

Debbie.

[deb68]

Thanks Penny - thats really helpful.

Debbie.

[Ellie]

Hi Debbie

I can't offer any help with things you've mentioned in your post, but just wanted to say that I feel for you so much, having to see your daughter struggle and suffer with everything that has been thrown at her. I'm sure everyone on here who is caring for a loved one breaks down in private at some time or other. None of us wants to see them suffer, in pain, depressed or upset. It makes us, as carers, feel so utterly helpless, doesn't it? I think you need to have a good cry, to get things out of your system so that you can carry on being strong afterwards. We are all on this roller coaster of emotions, ups and downs, feeling positive one minute and hopeless the next.

I am so glad that you have had so much more time with your daughter than you first expected. I hope you find someone for your daughter to have contact with and I wish you the strength and courage to cope with everything that is happening to your family.

Tell your daughter that others are thinking of her and take care of yourself, too.

Love

Ellie

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[Juliana]

Hi Debbie,

You and Gemma seem quite similar to myself and my Mum. She would bend over backwards, keeps her phone on and next to her all night incase I need her and like all mums wishes she could take their childs pain away by swapping circumstances.

I am a little older than Gemma *cough*....ok....11yrs older but would be more than happy to be a penpal/shoulder/source of info to your daughter, if she is interested.

I joined the No Surrender site a while ago, and unfortunately I do not find it particularly helpful. The forums are pretty quiet, and it can take over a month for someone to reply to your thread, if they bother at all. It does seem to be more lively with the breast cancer section, as there are more sufferers - but with it being segregated like that I find it makes you feel excluded from some sort of special club.

I am on Facebook if that helps - 'Juliana Cartwright', or I am more than happy for admin to supply you with my email address. Sometimes it's easier to 'talk' via email/letter than on the phone.

Anyway, have a think - and don't worry if she isn't interested - I won't be offended x

Kind regards,

Juliana

[deb68]

Thank you Ellie and Juliana for your kind words - Juliana I will certainly suggest to Gem that there is someone for her to contact if she would like to. It is such a comfort to be able to come onto this site and find real empathy and understanding.

Thank you again

Debbie.

[scp38]

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