My dad and this horrible disease

[MisterM]

Hi to all,

I have been reading the forum since my dad was diagnosed in February 2013, but not posted before. The forum and the support team have been really helpful for me during this terrible time. Sadly, my dad passed away on 26 August, aged 58.

His story is similar to so many others on this forum: a total roller-coaster ride. The common themes seem to be uncertainty and a mixed response from health professionals, pain, pain and more pain coupled with on-going tiredness and eating/digestion difficulties. I don't think he fully reported the pain during the whole period, it was never fully sorted-out, and his digestion was never really dealt with either.

I hope this post can help or assist others, as previous posts have helped me. I know everyone's experience will be different, but here are my golden rules:

1. Chase, chase and chase again: Chase up appointments, doctors, secretaries, the GP and nurse specialists to get what you need. Don't accept anything that you're not happy with. I was unhappy that 2 weeks is an 'urgent' referral for a CT scan and found on one occasion that the 'lung cancer slots' the next day were empty and he was then scanned in less than 24 hours. I had to chase for it (use PALS, they are definitely your friend).

2. You are not alone: use this forum and the PCUK support team. They are a goldmine of information, experience and ideas. This helped me a great deal, as I didn't feel so alone (although I certainly don't wish for anyone to go through this) and we were able to try lots of practical tips. It's a bit obvious, but use your family and friends for support, my dad had nearly a dozen trips to the 'regional hospital' )an hour away) and five or six different people gave him a lift, helping to spread the work-load.

3. Make the most of any time you have. Juggling a family and a job as well as helping my parents was hard work, but worth every minute. Sadly, my dad was rarely out of pain and was not able to get out and about, but we were able to visit him often at home. Don't miss out!

Best wishes to everyone out there struggling against this disease.

MisterM

[Mistipop]

I'm so sorry to hear your news, I lost my mum last year aged 65, 5 months after diagnosis. Our story is so very similar to yours...pain, sickness, pain, agitation, pain etc. They never managed to get on top of her symptoms.

Looking back now I feel no one was in any rush to do anything for us.

I dip in and out of this site, sometimes it's too painful, other times I get comfort from it, still in the bereavement process I guess.

Your info will be invaluable to other's suffering the affects of this horrid cruel disease.

Wishing you all the best. At least we all know and understand how each other is feeling.

Take care

Xxx

[adamjhill83]

Hi,

I lost my Mum on the 21st August 2012 to Pancreatic Cancer. For some reason I am finding it harder now than I ever have. Hoping it has nothing to do with CKerrie as I'm a soap addict. I've only just joined this site and already am feeling a benefit in just being able to talk to others. So just want to say your points were very helpful so thank you

[Cathy]

Hullo

I'm so sorry for each of your losses but thank you for taking the time to post on this forum and for the very useful information.

I do hope that this forum gives you all some comfort when you need it and that you will post whenever you feel you want to.

Best wishes

Cathy xx

[Mistipop]

Adamjhill83, I'm finding harder now too. I am glued to corrie, the whole household has to be quiet, I want to hear every word, I want to make sure they get the storyline exactly right (although I am aware everyone's story differs slightly)

I'm a little obsessed with it.

Hope you are ok

Xxx

[MisterM]

Thanks for the responses. It is certainly a difficult time for all of us.

Best wishes.

[KATB]

I second all of your points - that's a great post MisterM.

Still on the journey with my amazing daddy but so much of what you said rings true.

The support team here are totally fabulous - I don't know what I'd do without them.

K

x