To be so frustrated at the lack of sensible care for mil, im just getting nowhere.

[gigglepin]

Me again, sorry,but i cant find any forums for folk going through this, dont know where else to turn.

Today bil managed tog et a Dr out to mil. So far they have spoken to her on the phone. It was not her GP, it was another Dr she has never met.

He px antisickness medication..which isnt fucking anti sockness, its omeprazole. She nowhas not kept anything down for 3 days.

He px decent pain relief..but she ran out this morning, so has had nothing until after 4pm tonight. She is in pain. He told her to not take any paracetamol, so she hasnt.

her appointment is later this week, she isnt well enought to traips there, but has had no definitive diagnosis, so wants to go to get this. She was discharged from hospital and told "we think its melignant melenoma in your liver, we have reffered you. Now she is acutely unwell, its clearly end stage & time for palliative team care.

GP has reffered her to macmillan, but she has heard absolutely fuck all from them either.

So, until she gets her diagnosis, and they tell her that there is nothing they can do, she is in limbo, bieng ignored and fobbed off and suffering.
Its so frustrating.

sorry, rant over, does any one have any advice at all if you have been through this yourself?
Thankyou x

Nothing constructive OP but so sorry for what she (and you) are going through.

No idea but have you tried the other forum 'gransnet' maybe someone there has been through similiar?

thanks girls x

Have you had any contact with the district nurses? Weren't they meant to be visiting your mil yesterday?

Did you say on your other thread that district nurses are involved? If so why are they not getting involved with symptom control?
Have you tried ringing McMillan nurses?
If MIL had no actual diagnosis and is unable to keep fluid down can you ring the ward she was on for advice, they may suggest admission for I'V Fluids, unless she has had a terminal diagnosis.
It's so frustrating trying to get things done quickly in the community

You need some answers as to what the plan is.

one came yesterday, brought her some fortisips...which she cant keep down. Apparently, DN are coming in once a week, not every other day.

fucking useless.
DH & fIL going with her to appointment...armed with questions.

So frustrated, she so does not desrve this. poor woman.

Contact your nearest hospice even if it's miles away. They will offer so much more than bed for last few days eg outreach, day care, carer support for your BIL and your family.

Ok, she absolutely wont go back tot he ward becuase they were fucking useless and unhelpul and downright neglectful. It was a ward full of alcoholics, took her 4 hours to get a jug of water becuase it wasnt any of their jobs apparently.
Loads of awful things on the ward.

I have phone Macmillan for advice, theyw ere quite helpful with info and suggestions. GP reffered mil to macmillan, told they would ring her, that was last week, she still has heard nothing from them.

So had she now got her pain relief, as you said after 4pm? If so, has it helped? If not could you phone the out of hours GP? Could you contact the DNs and explain what os happening? You should have a number that you can call now. Do you mind me asking whereabouts your mil is, or would you rather not say? Sorry for all the questions.

ps. hospices are not only for those with diagnosed cancer - any terminal condition.

Have you tried ringing the local hospice? They may be able to get things moving or you more quickly. It is absolutely not acceptable for her to be without adequate pain relief, your poor mil.
Hope you get it sorted soon.

she has oromorph, whcih makes her nausea worse. plus tramadol.
oromprph worked well fro her pain previously, hopefully she will be able to have a peacefull sleep but her legs are so oedematus and uncomfortable and her ascitic abdomen is just huge.
She is lethargic and breathless as she has copd, with reduced lung function she is in a mess.

will phone hospice, im off to work, night shift, if i get a break i will give them a ring tonight to ask for advice.
Better go xx thanks again xx

Hope you manage to get some help for her x

gigglepin I really feel for you, and totally understand your worries and frustration and the lack of care, and speed of diagnosis...

Anything to do with the liver tends to look like it happens quick. What I mean is, you can have a problem for a long time without knowing then suddenly it all goes tits up and you've got someone who's truly suffering on your hands and needs speedy help.

She needs diagnosis, so however hard it is, get her to that appointment. Taxi, you taking a day off, I know its hard but you need that diagnosis so that the help and support can be able to start... I've been through this twice and I totally get the furstration and anger, but the reality is everyone is doing what they can do in the circumstances, without diagnosis, the risk of prescribing something incorrect is too great.

Anti-sickness drugs are a strange entity, they always made me sick, and most other people I've known to take them. My neighbour reacted badly to them (he did have late stage melignant melenoma in the liver) and I'm sure between McMillan and the hospital etc they found a solution to get him pain relief without the sickness. I will ask my friend as I'm afraid its all rather fuggy.

Anger is completely understandable, and the general pace of cancer treatment in the UK is actually not bad at all, unfortunately anything to do with the liver seems to happen quick... nobody wants your MIL to suffer, and it may require some 'on the ball' pushing from you and the rest of the family, but finding the right drugs to relieve the suffering can be quite difficult.

I have experience the same anger many times gigglepin but my anger has to be directed at the bloody illness more than anything, as a few of my family work in cancer care and are utterly utterly dedicated to, if not curing, relieving suffering. Its a bastard bitch cunt of an illness, and I totally feel your pain.

There are happy endings, of course, there is always hope. But if you can do anything for your MIL, and you are limited in your options, its to be on the ball, and y'know, in the worst case scenario of diagnosis, become her muse, news, joy, and emotional relief. Its a heavy burden but I am convinced that its more affective than any drug.

I wish for your MIL a cure, but being a realist, I wish you strength, you are obviously a caring DIL and rather than get angry at the world, keep on top of inconsistencies and provide a little brightness to a truly dark time.

Sorry if over dramatic and negative, not my intention at all, I really truly wish you strength.

By the way, I ended up moving in with my MIL/FIL when my eldest was a week old because I was not happy with the level of care MIL was getting. There was frustration, but no anger, as BIL/DH/FIL etc were doing the best they could and McMillan (being a charity) couldn't be there 24/7... its not a feminist rant by the way, the men did a lot right... but I needed to make sure that everything that was frustrating me was met, by me.

Sorry for the long post gigglepin feel free to PM me anytime. I've no medical training or experience, but certainly know people who have. I truly hope your MIL has a happy ending, and I honestly believe that you can help with that whether she's cured or not. xxx

Can you get her to A and E at the hospital the specialist appt is? Don't want to say too much as might out me but I work in liver cancer, and it's very specialised and district generals aren't always equipped to deal with it. A lot of the symptoms you have mentioned could be managed with things like drains and stents. Failing that, definitely sounds like she needs hydrating, that could be done in a local hospital-if she gets admitted there they can phone your nearest HPB centre and get advise or get her transferred. Haven't read other thread so not sure how far along she is, but liver cancer patients can often look at death's door but improve with drainage and proper mnanagement. Good luck.

You have my sympathies.
The only suggestion I can give is to keep phoning out of hours docs until her pain is under control. Or even they admit her to hospital. But keep phoning until you get pain relief

From experience I know our local hospice will not do anything without the patient being referred there by a doc, even if the patient has been attending day centre there.
We were left in limbo over New Year with my MIL in extreme pain, the person who answered the phone at the local hospice couldnt help us, gave no advice other than get hold of MIL own GP which was impossible over the holiday, the OOH doc prescribed high dose morphine which we then had to scour the city to find a pharmacy with it in stock.

Eventually MIL was admitted to general hospital and from there to hospice where she now has pain under control
but we're counting the days.

Can you take her to A&E? It sounds like an emergency to me.

I think the op said her mil did not want to go back into hospital on her other thread.

I understand that chestnut but sometimes it's the only way to get what you need...especially if she has acsites, that could be drained off so easily and would improve her shortness of breath as well as her pain. Some hospices can do it but it's quite rare. And as a PP said you can't just turn up to a hospice, they need a detailed referral form a HCP usually. They often have fab advice lines though, but she sounds like she needs actual medical care, not necessarily just palliation. OP if you come back-she really needs a hospital. I know it's awful but to get appropriate care you have to be willing to access it IYSWIM.

Sorry I wasn't disagreeing with you at all iamabadger just giving more info to those who are advising the op.

No, wasn't directed at you or meant an arsey way! Wan really for hoping the OP comes back, finding it a bit frustrating reading this-MIL has no diagnosis and hasn't seen a liver doc, there is no way to know if she's end stage or not! Some of my patients come in to us in this state then leave, obviously not necessarily cured, but in a much better condition, a lot more comfortable and with a proper plan in place for their care. I'm lucky enough to work in a specialist centre though, hence the advice to go to the one she has an appt with. Actually OP, you could even ring their switchboard and ask to speak to the HPB or hepatology on call reg and get some advice from them.

Hi,
Thanks SO much for all of your kind words, sitting here sobbing.
Aldiwhore i never in a million years thought that the words "bastard bitch cunt" would make me cry and smile at the same time, such a fantastic description.

A&E was a distinct possibility, tbh, bil rang 999 and they refused to come out to her as she isnt considered an emergency. She is unable to walk far..to the car, and is very resistant to going there. I fully understand your reasoning though about once her being there, she can get all of the help & referals that she needs. If that were true, i would take her there myself and get dh & bil to carry her to the car, but i know that she will be sat on, neglected and ignored while there. Its truly dire.

So, she has oromorph, she has diuretics, she has omeprazole. She has her appointment tomorrow.
It apears that the consultant at the specialist centre spoke to mil's GP last week, saying that he didnt think there was any point in her travelling all the way there, to refer her to the paliative team instead. This based on MRI, CT, USS & her hospital discharge paperwork.
GP disagreed, and insisted that she goes, mil does not want to go, needs to go..her words. She needs to hear it for herself. Fair do's, she has to do this. DH is taking her.
I have instructed him to take pillows, and bundle her up all snug & comfy int he back od the car, lots of stops...water pills, and fetch her straight home after the appointment.
They NEED to go as a family.
I think that from there, things will move in a more satisfactory speed.
Patience
patience
patience.

I dont even like mil that much, she dislikes me, hell, ive been on here loads of times whinging about her. But i now regret that. She has provided me with her son, her child, a kind, lovely, sweet, devoted man. That is because of her.
This is so hard. mixture of guilt, frustration, desperation, sadness, the anger is now ebbing. My priority is not anger, its my son, who adores his nana, its my husband, who adores his mum. Its getting them through what is to come.

Its just that i know what is to come, i wish i didnt, i wish i could look at this through thier eyes, and not my medically trained eyes.

chin up chuck...i spose.

fuck...who am i kidding...its chins up not chin! as if i have one chin.