Told only Fri 20th April. My dad is only 67.

[Guest]

After all the months of pain and hospital stays and never ending blood samples me and my dad were given the real diagnosis on Friday 20th April. Due to his already ill health and severe diabetes the major operation is out of the question. I am so devastated but I know there is only one outcome for him but WHEN. My Dad has suffered with this since before December 06, The Doc did mention Chemo the other day but can someone please be honest with me that he should just forget the chemo and take each day as it comes now. has anyone had similar situation and lost the loved one, If so how long did they last, He is only 67, I am now thinking that he has already survived 4 months of his borrowed time. please someone give me honest realistic timescales. Lillian

[rosieh]

Lillian

I am so sorry to hear your news. I can understand your questions. I honestly don't know if palliative chemo does help as I have no experience of it. Maybe somebody else will be able to help with that.

We're in pretty much the same situation with my dad (felt ill from mid-January, in hospital 6 weeks, diagnosed 8th March, no treatment offered). My dad is 68.

We also wonder about "when" as it isn't something that anybody has been very specific about with us. The closest we got was one Registrar who said that because my dad's cancer had started to spread (into his stomach lining) then it was likely he would deteriorate rapidly and probably had "months". For this reason they decided not to refer my dad to the Regional specialist, and didn't offer any treatment locally. I read into that months meant the short term rather than almost a year!

Have the doctors told you whether your dad's cancer has spread anywhere? How is he doing in himself - is he still able to be active and do things? Also - what support have you been offered for your dad's care? If you have a Macmillan Nurse then it might be worth talking to him/her. And don't forget your dad's GP might be able to help you.

Take care and I hope that you get the answers you need.

[Guest]

Thank you so much for replying. The care my dad has been offered is so weird. The Docs at hospital have arranged for whoever they are to come to my dads home several times a day with meals etc for the next 3 weeks, Do you have any idea why and where they got these 3 weeks from. So is that their expert opinions or what. Every now and again I have a wee laugh about it as what happens after that or do you think they know that 3 weeks is all he will need or maybe he has just to starve after that. Im so confused and never been so mixed up. Hope my reply makes some sense to you. lillian

[rosieh]

Three weeks? Sounds odd to me. My major issue when my dad left hospital having being told he was terminally ill and that they would arrange for his palliative care, is that nobody actually explained to us what "palliative care" is. So, over the course of the 2 weeks after his discharge, we were in a bit of confusion about who would come out, when, for how long and who did what.

However, what I did manage to establish is:

- The patients GP is responsible for his care when he is at home

- The "palliative care" team consists of: the GP, District Nurses, Home Carers and Macmillan Nurse

- The District Nurse Team Leader seems to be the person who co-ordinates everything for us (equipment, carer visits etc). He deals with Social Services on our behalf.

- Various other people can be involved (physio/occupational therapists, alternative therapies provided by volunteers for Macmillan etc). You can arrange that via the Macmillan Nurse.

- Home care can do a certain amount (e.g. my dad has a stoma bag covering a laparoscopy wound and Home care will change and empty it) but there is a line where they have to stop and District Nurses take over. (E.g. my dad has dressings on his pressure sores, and Home Care are not allowed to touch that). They can also give out medication but only if it is prescribed in day-labelled packaging.

Lillian, what I also learned is that you need to find somebody who will explain all of this to you, and work up an appropriate care plan for your father. Don't volunteer to do too much yourself (or they will let you!). I'm not saying this because you wouldn't want to help your dad, but because your dad is entitled to support in his final weeks and you should make sure he gets it. You might feel that your main role should be his emotional care, and as far as possible the experts should deal with his physical care. (That is my personal opinion, everybody will have their own ideas on to what extent they want to "nurse" a loved one).

Also, you might find you need to hassle people and push a little bit to get the full services you feel that your dad needs.

As for three weeks - that's puzzling me. When my dad was discharged, the lady from Home Care told us (well, we asked when we saw reference to 6 weeks in a leaflet) that they are attached to the local GP area covering my dad and are there to provide short term support on discharge (for 6 weeks). But then she said what normally happens is that after 6 weeks, patients requiring more care are handed over to an Agency care team. She also advised us that in end-of-life cases, they usually kept the same care team throughout so as to avoid disruption and distress for the patient. It may be different in various parts of the country, though? We're in Widnes.

I can understand that you're feeling mixed up - it's a tough enough time anyway without having to work all of the care arrangements out. Do you have anybody who can help? If not, then I suggest you make an appointment with your Dad's GP and ask to talk it through with them... they should be able to explain things to you.

We've been very fortunate in that my dad's GP is fantastic (she's given mum her personal mobile number if we ever need it) and came to see Dad within days of his discharge to check what care he needed and to make sure that he was getting it.

Is your dad actually home yet?

Sorry this was such a long post, it's just that if anybody can learn from our recent experience then I am happy to share the information.

Jan