Mum has pancreatic cancer

[oldbaghere]

He has a few months at most

Fuck

[oldbaghere]

I have a black book I'm writing everything down in so it's all in one place.

I've done a list of questions and I'll ask and ask til I get an answer.

Hugs to anyone who has ever gone through this it is dreadful.

[oldbaghere]

His is a stupid question.

Will I get listened to more if I go in dressed in a suit? Or don't I need to bother? I am slightly over thinking this whole thing.

[PacificDingbat]

You just might...

Go dressed in whatever you feel comfortable and confident - if you are used to wearing a suit and it give you 'armour' by all means wear it. If it would make you feel stiff and 'dressed up', don't.

Also, don't go in all guns blazing (I know you've got cause to be pissed off, but keep that for another time). Try and find that line between assertive and aggressive and stick to assertive (I know I can struggle with that...). Broken record technique can be good: just keep repeating what you need to know/don't understand. State you felt your mother was pushed out the door without much/any support, but don't get in to a rant (if you can help it).

I am sure you'll do fine.

Sorry to hear her GP is not up to scratch. Can you see a different dr? CAn you just tell him you need palliative care/MacMillan input and then do everything through them?

[PacificDingbat]

Sorry about typos - DS4 is 'helping' me type...

[kansasmum]

I get where you are coming from but no it won't matter. What matters is that although you are upset and will have info overload, just try and make sure you ask all your questions and write down the answers. Also at the end get the Dr to summarise their plan of action - eg " so you are contacting the hospice team re pain relief and I will hear from them on 24 hrs and they will come and visit mum? And the number I call if I need to speak to a dr is??"

If you can have a clear plan of action when you leave the appt it will help you feel a bit in control and it will feel less scary.

[SantasPelvicFloor]

Agree with dingbat. Don't go in guns blazing but hear them out. They may address all issues. If not, wait until the end and then check with your mum (Mum do you feel...understand...need...etc) ...so they know you speak for her...

The biggest difference you can make is making them see you as people, a family...not a 'pancreatic tumour grade whatever'

[jacksgrannie]

Op - I am so sorry to hear this. A very dear friend passed away with pancreatic cancer several years ago. I did loads of research then and I won't lie to you, it is almost always untreatable. It is also one of the most difficult cancers to diagnose apparently.

I know this is the hardest part, but you need to be strong for your mum and dad. My friend had brilliant care at home (with her husband) from the local hospice at home team. You should have specialist cancer care locally. Ask the doctor about this. If at all possible, many cancer patients prefer to be in their own homes and this is quite manageable with specialist nursing/palliative care.

Our experience with the medical profession (with my mother also, who died at home with cancer) was that they were very good indeed once the diagnosis was made.

Make a list of questions to ask, as previously advised, and write down the answers. Try to get a direct telephone number for future contacts.

Don't worry about how you dress when you see the medics - just be calm and try not to get emotional.

[daisydotandgertie]

OP my DH was diagnosed a month before we started palliative treatment and that was nowhere near Christmas.

I absolutely understand how you feel but all I'd say is try not to look at it as you versus the medical bods. It won't help. They won't be trying to withhold treatment from your DM, and they won't be trying to upset you. It really isn't their fault your lovely DM has such awful cancer.

Go for the GPs appointment first thing tomorrow morning and do not be fobbed of by reception. You need an emergency appointment to get the ball rolling. The GP will refer to Macmillan and in addition, most GPs are pretty hot on palliative care - in my area, the hospice nurses refer everything back to the GP anyway, so all scripts etc are from the surgery.

There is a whole new level of service available for terminally ill patients which fortunately most people never have to find out about .

While you're with the GP, ask about a 'just in case' box. We didn't get told about it until it was too late really and it is useful to have for in the middle of the night emergences.

My DH died earlier this year - do PM me if you have questions you want to ask off board.

[oldbaghere]

I am hoping that the news today isn't any worse than we have heard already. I don't really think it will be but I hope it isn't. For mum and dad's sake.

[oldbaghere]

The way it works is

Multidisciplinary team meet first thing. Review her results which should have been sent up having been looked at by the folks from the regional centre.

Then that goes to consultant's secretary who phones the patients with the time of their appointment.

Except I don't know if it'll work like that since her consultant has gone off on his christmas hols? Given that her results weren't up on Friday I hope they are up today.

[SantasPelvicFloor]

Whatever they say regarding the appointment you can challenge it. Explain your anguish and distress. Challenge it and their humanity will make them want to help you

[oldbaghere]

I tried on Friday. suffice to say the consultant's secretary was less than sympathetic

[SantasPelvicFloor]

What did she say?

[oldbaghere]

They have policies and procedures that must be followed.

if we don't get an appointment today I'm going to go postal. And dad said he'd pay for a private appointment

[SantasPelvicFloor]

I'm really sorry she had an unsympathetic attitude. I would have thought she could apologise that she didn't have the results even if it's not her fault. I guess they would still have taken then to MDT today (you'd hope so!).

She could have apologised but explained that at least today she would have a consensus opinion. I can't imagine decisions would have been made on Friday but you would have had more info and felt supported. It's the void of of support, a plan and info that they are not managing

[SantasPelvicFloor]

I can't believe you don't already have an appt?

[SantasPelvicFloor]

That's ridiculous for the same day?

[oldbaghere]

I know it's a nonsense.

They have the meeting in the morning and review the stuff sent up then she phones the patient/their family to give them a time.

I was to go on Friday and I was in work and I phoned to see if she could give me a rough time as I had to get out from work but she said no.

and she was rude and abrupt and heartless about it.

She's on the growing list of things I might complain about at some point.

[SantasPelvicFloor]

I think the MN line of did you mean to sound so unsympathetic is meant for her

[oldbaghere]

I said to her but that's a nonsense - are they expected to sit by the phone all day waiting for a call? I work 5 mins from the hosptial so I'd just have to duck out but what if I was an hour away

she just said "that's how we do things"

I intend to raise that with the registrar if we get to see him today - it means the whole family have to put their lives on hold for an appointment that might not even happen. It's rotten

[oldbaghere]

I mean I could have wasted a day's leave to stay off for an appointment that never took place.

And leave is going to be something I'm going to need in the next few weeks and months.

[SantasPelvicFloor]

That does sound like a system she isn't in control of. If it were me I'd have probably empathised and said I'm sorry. It's a really awful system isn't it...

[PacificDingbat]

Good luck today, oldbaghere.

That secretary does not sound like a master in communication skills, does she?
Sorry you came up against an unsympathetic attitude - that is really the last thing you (or your mum or anybody in a similar situation) needs.

The MDT is more important than the presence of your mum's consultant. MDTs are there to ensure everybody's individual case gets looked at by all specialities involved and that all options are looked at from all sides.
Whatever plan of action emerges from the MDT, this has nothing directly to do with things like pain relief, dietician's input, access to MacMillan support. I hope you get some progress from that point of view from your GP today at least.

As an aside, dietary supplements (Ensure plus, Complan and similar) can only be prescribed by dieticians here, NOT from GPs. So an early referral is often a good idea (or you can just buy them in the chemist if you know what kind of thing your mum is to have).

Thinking of you.

[oldbaghere]

Im sitting here watching the clock tick and afraid to leave my phone even for a second

[PacificDingbat]

Are you off work then today, oldbag?

You can just aimlessly wander around MN and post shite if that helps pass the time?

Waiting is The Worst...