Tuesday 17th April

Various posts from PCUK Forum:

Nia, if your Macmillan Nurse is coming to meet you then I hope you will get all of the information you need to prepare for your dad's care. Make a list before you see her, I found it helped me to remember to cover all the concerns I had. I have found my dad's palliative care team (a combination of my dad's GP, District Nurse, Carers and Macmillan Nurse) to be very good... but as I think I said to somebody on another thread, be sure to push and ensure that you get exactly the help and support you need. If you act like you can cope, you may be left to do more than you can actually handle (or are comfortable with). I'm not being negative here, just from my experience a lot more support is available to you than may be initially offered.

Also, remember that you can sometimes get alternative therapies like Reiki through Macmillan. If that is something your dad might be interested in.

Barb - I am sorry that your mum wasn't offered treatment. I know how it feels when that last glimmer of hope is taken away from your parent. When my dad was told his cancer was inoperable, he was not interested in any life prolonging therapy - he doesn't want to linger now as his quality of life is severely impaired due to immobility and weakness.

I also understand what you mean when you say you fear what we all have ahead. My fears are slightly lessened the more I speak to people about things like pain and symptom relief.... but then we aren't really that far along the path with my dad (I don't think).

Another post:
We were a bit silly in that we bought dad a brand new double bed just before he came out of hospital. A week later, the care team (carers and District Nurse) decided that he would need a proper hospital bed and we were left with the dilemma of where to store a double. Ah well, you live and learn. :)

And another:
For those of us still going through our journey with loved ones who are ill, it doesn't make us give up hope - I guess we just learn to revise what we hope for. Early on in my dad's illness I hoped for a diagnosis of pancreatitis or IBS.
Then when we knew he had pancreas cancer I hoped for some form of treatment.
Then when they couldn't offer any treatment I hoped for my dad to be comfortable and in peace.
It's often hard to find any positives in this awful disease and dying process.

And another:
Melanie - yes I agree with you there. (She has suggested supporting improvements of diagnostic techniques for PC). Later on (after my dad has passed) I want to look into that in more detail. I am also concerned in that pancreas cancer has affected my paternal grandmother, father and maternal grandfather. So I want to look at the Europac info and what they're doing to investigate genetics. And another positive I can see (if I look hard enough ;)) is that I can always think about fundraising for research and diagnostic techniques.