Mum has pancreatic cancer

[oldbaghere]

He has a few months at most

Fuck

[PacificDingbat]

oldbaghere, I was so pleased when I read this morning that you had found your GP helpful, but now there's bad new re the hospital appointment. I am sorry.

I agree, don't wait for whatever the hospital have to suggest/discuss, make your own plans and do whatever brings you, your mum and your family joy.

Creon is not the be-all and end-all - it helps part of the 'exocrine' pancreas function (not the insulin part, but some of the other digestive 'juices' the pancreas secretes). Allow your mum to eat whatever she fancies/what agrees with her - small amounts frequently and concentrating on calorific foods. If she can tolerate them.

"How long has she got?" is an impossible question to answer at all accurately. When experienced drs say 6/8/12 weeks, they give a statistical answer which does not mean squat in relation to the one person you are interested in, your mother.
Try to hope for the best while planning for the worst .

[oldbaghere]

Pacific that's incredibly helpful, because it is exactly where I'm at with it.

The docs look at statistics. They don't know the person. And my father was doing the doc is god refrain last night. I pointed out to him the doc was just his dgc1 in 20 years so he had to stop thinking they had all the answers.

What I'm maximumally pissed off at is that they told us right before Christmas, and now they have fucked about so long there won't be any treatment even in a palliative sense before Christmas. So what the fuck did they tell us for? They might as well have told her on 27th December.

[PacificDingbat]

You're not wrong there.
She is your only mother, but only one of many patients.
And I know that what time of year it is does make a difference in how you feel about it, even though of course whether you found out last week, this week or next week does not really make a difference to her outcome.

People surprise you all the time. They do far better that anybody would predict, or sometimes unpredictably worse.
Median survival times as discussed upthread is a good example of that: what percentage of patients with a similar illness survive how long does not say anything about your mother. Drs do not have a crystal ball - at best they can give you a ballpark.

Btw dealing with a nasty illness like pancreatic cancer and all the physical, emotional and psychological fallout is really, really hard work all round. Pace yourself. Look after yourself too. Take something to help you sleep if you need to. Eat. Breathe. Do something fun and don't feel guilty about laughing.
Sometimes all you can do is laugh death in the face.

[oldbaghere]

What's funny is I got sleeping tabs. And had no need to take them last night I slept for 5 hours. It's as if because I have them as a safety blanket I don't need them.

[PacificDingbat]

Fair enough, they are working then

[oldbaghere]

[OhThisIsJustGrape]

My mum had pancreatic cancer, hers was very advanced by the time she was diagnosed, probably at a similar stage to your mum's. I'm so very sorry that this is happening to you all, it's a hideous time there's no denying but I agree with pp and make the very best of the time you all have left together. My lovely mum passed away just a month after her 47th birthday.

My mum refused chemo as the side effects completely outweighed the teeny benefits, the consultant couldn't guarantee it would make any difference to how much time she had left with us and therefore to her it just wasn't worth going through.

Mum was given excellent palliative care though, plenty of pain relief and even underwent a nerve blocking procedure to try and help with the pain. Macmillan nurses were good although tbh it all happened so fast that we didn't really take full advantage of the support that we could've accessed.

If there is anything at all that you want to ask me then please pm me, I don't want to go into details on here as you may not wish to know but you know where I am if you do.

[oldbaghere]

Thanks oh this I will do xx I want to know what we are facing. I have a sense from talking to my friend that mum is in a similar place wrt the chemo

[oldbaghere]

A positive thing. I have a really really annoying colleague. She drives me demented.

She massively put herself out yesterday to do something very very helpful and supportive for me.

I have utterly changed my view of her.

[Tiredtrout]

That's something then! Hope you have a good weekend oldbaghere

[PacificDingbat]

You will find out lots of things about people on this journey - have a good weekend.

[oldbaghere]

Tomorrow is the meeting with the multi disciplinary team. Not with her lead consultant coz he's on his holidays but with the registrar leading it.

I'm going to ask about the whipped. Even though I don't think it will be possible.

I also think mum and dad will hear news they aren't really prepared for. Ie that nothing they can do really means nothing they can do. And a few weeks really means a few weeks.

She is in horrendous pain and can barely move. The pain is in her back as well as her stomach. I assume it's the tumour pressing on nerves? I have googled and I think there's a procedure they can do to block the nerves so I'm going to ask if they might be able to do that.

They did say on monday that she wasn't a candidate for even palliative chemo but I'll ask again anyway.

She looked notably frailer yesterday. Frailer even than Monday.

[PacificDingbat]

oldbad, a Whipple procedure is a huge operation that involved taking out virtually every internal organ we can do without - it will only be considered if there is no metastatic spread and therefore a chance of cure. The recovery is long and hard and mortality is high, particularly in a frail person .

You mum need her painrelief sorting out - she should have a palliative care team involved: specialist nurses and drs who deal with this kind of thing.
Yy ask about a coeliac block - anaesthetist can block the nerve that supplies sensation to the abdomen.
Pain control in pancreatic cancer

I am sure there will be news that will be v hard to hear and I am very glad that you can go with your parents. Take a notebook, write stuff down; in fact write any questions you want to ask down too so you don't forget when you are maybe a bit flustered or upset.

Your mother is lucky to have you to support her and your dad

[oldbaghere]

Thanks pacific. So the whipple won't be possible because it has already spread.

We have had no contact from anyone. She was literally told and told we can do nothing and was out the door of the hospital and home within an hour tops. I am so angry about how we have been left to cope with this there's been no contact from a palliative care team or anyone and is unlikely to be before Christmas. They dropped this bombshell on us and have gone "oops. Can't do anything til after Christmas"

Even the apptmt Friday was a non starter because her consultant is on holiday and now we are only to see the reg on Monday.

It feels like they don't give a shit because she's terminal and there's nothing they can do to cure her so they're going to do nothing at all.

But. That anger won't help. What I have to do is push to get things in place for her. As soon as possible.

[PacificDingbat]

You have every right to feel angry and maybe there'll come the time when you will want to but all this in writing and complain about it, but yes, right now anger won't help.

MacMillan can see your mother within 24 hrs, Christmas or no Christmas, from the moment of referral. I think they accept self-referrals too, although that may depend on where you are (I'm in Scotland).

You really should not feel that nobody give a shit because her disease is not curable - people work really, really hard at allowing terminal patients as good a quality of life as possible for as long as possible with hopefully a good death (yes, there is such a thing).

[PacificDingbat]

Sorry, nope, according to their website you need to be referred by 'GP, District Nurse, ward sister or Hospital Consultant'

[daisydotandgertie]

old bag your GP is the key to support in the community if you're in England. Eventually Macmillan should work with your GP.

If your Mum is in pain today, contact OOH and insist on a house visit (triage will take ages) for palliative pain management. The OOH GP can administer/prescribe a variety of pain killing help.

Don't let her sit at home in pain waiting for the hospital to 'do' something.

Contact your GP first thing Monday morning and insist on an emergency appointment (ours did a house call the afternoon we found out about my DH's terminal cancer) because they will be the ones who will support you when you're not in the hospital's care. For us, the hospice were utterly useless but the GP was better.

[SantasPelvicFloor]

Oldbag I don't really know what to say because I want to offer hope but I know that would be minimising your reality.

When you have time in the future and can revisit this situation please write to the dept 'caring' for your mother and just let them know how it felt to be diagnosed with a terminal disease, pushed out of the door and told we'll see you after Christmas... I'm fuming on your behalf.

[SantasPelvicFloor]

Lovely advice daisy and you're right. The GP is probably going to be your biggest support here

[PacificDingbat]

Oh yes, get on to OOH today for palliative pain relief - whoever you speak to in triage will give your mum priority if you let them know she is a newly diagnosed cancer patient with insufficient pain control.

[oldbaghere]

I will do that.

It feels like - they gave her a few weeks and now a week has been wasted. She won't even be seen by the registrar until tomorrow, which is a week post diagnosis.

Her gp is useless

[Mignonette]

Oldbag

We lost both Fathers in a year. My Father had stomach cancer left undiagnosed despite repeated visits and requests for further tests.

Just wanted to say that I feel deeply for you and will be thinking of you. Palliative care will help you all but my advice to you is to find out as much as you can so you can anticipate issues rather than be left reacting to them. Bank Holidays need to be planned for so as to ensure continuity of care.

Issues like symptom control, mobility and activities of daily living equipment, special payments (there are some available to the terminally ill in some circumstances) can be addressed by MacmMillan, Marie Curie and local hospices which will have a staff member who will advise on welfare and social benefits.

If you would like to PM me, I am always available for support, advice or angry ranting.

to you all and I wish you a good Christmas with meaningful time with your Mother.

- a whole bottle for you and can we have a valium emoticon MNHQ please to send MNers mental calm?

[oldbaghere]

Pure all so kind and helpful. Thank you all so so much. You're all amazing.

[kansasmum]

I'm so sorry oldbag. I would deffo call OOH and when they come out ask the Dr to speak to hospice team for pain management. We had to get OOH dr out for my Dad he had (liver cancer) cos the hospital discharged him with a totally useless prescription for pain relief. The dr was great and really helpful.

I found once Dad was referred to the hospice team ( it was hospice at home) things were MUCH better and I could call them 24/7 and they always made me feel like mum and I were making the decisions and had some control.

Be prepared to really be your mum ( and Dad's) advocate tomorrow. The squeaky wheel gets the oil. Don't be fobbed off and if you don't understand something keep asking. It's their job to explain everything so please don't feel rushed out of the appt if you haven't got all the answers you need.

[PacificDingbat]

Yy re squeaky wheel and forward planning.

Always plan for the worst case scenario and then enjoy if you don't need what you prepared for.