Mum has pancreatic cancer

[oldbaghere]

He has a few months at most

Fuck

Yes off

Half 12 at hosp mum just phoned as I was posting this.

Ok then. Gather your thoughts and then listen to what they have to say, say what you need to and ask your questions.
HCP as a rule IMO and IME are usually caring people, but do get bogged down by sheer demand and are in danger of forgetting that they have an individual in front of them, a person, and not just a 'case'.
Work with them, they are not against you and should be able to deal with worried, stressed, upset people.

V best of luck.

these are my Q

what kind of pancreatic cancer

location

spread

stage

treatment options

what do you recommend and why

side effects of any treatment

quality of life issues

who is the top consultant and how soon can she see him/her

clinical trials available

best/worst case scenario for life expectancy

the hash of this appointment system

macmillan/palliative care

pain relief

supplements for her diet etc

does that sound ok?

V comprehensive. Yes, sounds good.

Put the 'hash about appointment system' at the v end though IMO.
Macmillan/pain relief/diet should come first I think.

Remember, the best specialist in the world can only talk about statistics, NOT about how your mother is going to do.
"80% of patients have problems with vomiting with this treatment" does not tell you whether your mum is going to struggle or not.
"5 year survival rates are 50%" does not tell you which half your mum is going to be in.
IYSWIM.

you fucking could NOT Make this up.

meeting cancelled. There's an emergency. They will phone to rearrange after 2pm

Oh Oldbag...

Fingers crossed that they get you all in this afternoon and get some form of a plan together. Thinking of you all.

Oh no!

Hope you're in the meeting just now and have not combusted.

Well today was a very mixed bag.

she got good pain relief but i've to contact my dietician friend as they were less clued up than she is - but then it's her speciality.

mum is to have a biopsy but due to christmas that won't happen until 9 jan. that biopsy will determine the type of tumour she has which will then determine the treatment options.

the negative is that mum and dad are feeling very hopeful. I think they are taking too much out of it. They didn't listen when the doctor was saying that surgery was only an option if they caught it very very early and in mum's case it hadn't been caught that early, for example.

But. 9 Jan is the next date in the diary.

God I sound like a bitch saying they are v positive as a negative.

No, you don't sound like a bitch saying that; you are very likely actually hearing what is being said whereas they will to some extent hear what they want to hear.
Which is fair enough - everybody copes with bad news in different ways.
I am glad that she has better pain relief; that makes such a difference.

I hope you as a family will be able to have some kind of Christmas together and put this to one side until January.

there were just so many questions it was pointless to ask until they have done the biopsy. Like, the treatment options are determined by the kind of tumour - so I couldn't ask any of those Questions, because the doctor wouldn't have been able to answer

I have been in your situation but with my sister. I will never forgive a colleague telling me to pull myself together when I was having a sobbing meltdown and found the delays and lack of 'instant' healthcare difficult. In reality they don't have free appointments just waiting for this situation and are managing availability vs demand as best they can. It's still incredibly difficult as a relative.

I imagine your parents are experiencing this differently to you. You don't sound negative at all. You're worried they face a crash, but maybe they are just letting it sink as as they feel able and will get there eventually

Mum sorry your mums appointment didn't go better oldbaghere. At least pain relief is being looked at, I hope you can have a nice Christmas regardless of this and twatty ex. Pm me if you need or want, the hospital appointment thing sounds very similar to what we had with mum

Just phoned dad. She's v v bad this am. I think things are moving rather fast.

Sorry. That wasn't clear. She's had a horrendous night. I suggested straight to hospital and dad bit my head off

I have a really really bad feeing about this. This back pain started as an ache exactly a week ago. She now can sit or lie can not bend down or get in and out of the car and the oxycodone (I think?) hasn't touched it.

This isn't good, is it?

Can you call GP/Macmillan/OH to try to get some help to make your Mum more comfortable?

Thinking of you all

Methinks via dad who isn't in the best form that she is going to be admitted. Today.

I'm supposed to be there tomorrow and Boxing Day. I have no Xmas dinner for my kids. Well I have starter and dessert. No turkey. Fuck.

Jesus wept I've turned into Elizabeth Bennett. Methinks

Try not to worry about all the outside stuff, get them to get your mum some help and worry about the other bits later, your dad might be snappy because he's scared

Please does anyone know. They are taking about admitting her to a specialist Macmillan unit today. How bad does this make it

I can't answer that oldbag. It does mean she will get specialist care though so that is a good thing. Hold onto that.

Try and stay calm with your Dad. I'm sure you are all under huge stress and it must be enormously frightening. A McM unit will help you all.

You can cook the turkey for your dad. Christmas will not matter.

So sorry for your family.
My dad was admitted to this type of unit to get his pain under control -they were awesome + he had some quality time before he died -which by the way was an extremely ppeaceful end controlled by the drugs.
Keep strong I know it's crap now but she is seriously in the best place xxx

A quick google found this

Patients are admitted to the Macmillan Unit for treatment of complex or difficult to manage symptoms, or to receive care when they are approaching the end of their life. It is not a long stay unit. Many patients are discharged from the Macmillan Unit ward with ongoing support from the specialist palliative care service, either to their own home, or to nursing or residential care, once their symptoms have been controlled

This could be what you need to give your mum care and relief of symptoms..discharge her and then deal with the future

Huge hugs to you oldbag. This must be so very very hard