Some information regarding nausea and medication

Sorry to hear your story and obviously you know just how poorly your wife is but I am offering you a ray of hope. 

We were told in Nov 2016 that there was no more treatment for my Dad so was palliative care from there on in.  Mum looked after Dad with help from us, their 6 children.  On the day we were told that, my world collapsed but his palliative care lasted 2 years so we had Dad for an additional, precious period of time. Dad passed on 18th November 2018.

Please don't take palliative care to mean that the end is nigh, only you know how ill your wife is. Keep an eye out for infections or changes so you can notify you those who need to know. 

Sending you hugs and strength 

Julie

Totally agree, that’s how I first saw Pallative care, but now just see it as a tool to make my Wife more comfortable, the Macmillan care does vary depending who you talk to, we had a lovely lady previously who was very attentive, but our New person, doesn’t really listen, think she sees it more as a job, the rest of the team are helpful and supportive, just have to know who to ask for what, same with DRs....our GP surgery has insisted on an 8am phone call to book an appointment since the beginning of this pandemic....whereas previously it was for on the day appointments only.....very difficult making an 8am phone call, always wakes my Wife up and not guaranteed opi will get through and get an appointment.....not really good enough.

my Wife has a fractured hip, which cracks as she moves and gets severe pain, going to see if gluing is an option guided by ultrasound, not holding my breath as support is poor ano the NHS waiting list is horrendous...

Hello Arthurd

reading your entries lots of the experiences you have had with the medical teams involved with your wife’s care have been mine too in accessing support for my husband who is on the palliative care route too.  

I have even had a stand up row with the gp receptionist to get some attention before a long bank holiday.  I have found that knowing about the Gold pathway which most gps are signed up for gets my husband quicker and more directed support.  Have you had info about that?  There is quite a bit online about it and I sort of quote it at the receptionist.  Macmillan nursing is part of that Gold pathway so you probably have but it does give the patient set out expectations on their care and the right to be involved.  For me it has ensured GP response is at least that day regardless of what time I phone.  

My very best wishes to you and your wife - it was lovely to read of how much love you two have for each other. 

janeyC

Thank you for the info regarding golden pathway, will certainly look into that, I have often thought that Pallative care patients should get some priority with their GP but last time I phoned, very worried as she had a continuous nose bleed, I was told no appointments for a week, I said it was urgent, and managed a next day appointment, but they not supposed to do that, I told the GP how scared I was and he said I should have been put straight through, he would talk to the receptionists, next time I phoned when she had severe confusion, I was again told a weeks wait for a phone appointment, said the GP said I could be put straight through if urgent, I was put straight through....luckily the confusion has now stopped, Nausea is worse than ever, & she has been unable to pass urine for 3 days, if still the same Monday will phone GP again.....with the same battle likely, she needs an ultrasound,. She absolutely scared of going into hospital, last time she was in 3 days and she was ignored, asked to go toilet for water an extra etc etc but nurses just said “be soon” I know they are busy ( was pre pandemic ) but I won’t see her suffer like that.

Macmillan are supportive, but as soon as a ‘ condition’ is mentioned they don’t want to get involved.....they deal with symptom management only.....doesn’t help, keep asking so many people, oncologist, Macmillan hospice GP etc......

just need a single contact to sort everything......thanks for listening 

Found https://goldstandardsframework.org.uk/cross-boundary-care-training

will ask our GP.....but our practice was meant to do Skype consultations, never happened, they NEVER reply to emails....not helpful, hospice amd Macmillan often reply the following day, also not helpful.

Www.goldstandardframework.org.uk

hi Arthur

above is a link to the government site.  That may lead you to other sites.

I have found ringing 111 on a weekend quite useful as their staff will either send a doctor out or suggest something for you to tell to the gp the next day.  The gp then knows my call is logged on the system and acts quite carefully to avoid a cock up which could be provable.

my other route is to use system online to write messages to the gp which again is logged so demands appropriate action.  System online is a emailing service gps use.  Again most gps went on this as the pandemic struck.

I am no doctor but I would consider ringing 111 today if your wife still hasn’t passed urine.  

thinking of you both and sending best wishes.

janeyc

Hi, my mum has been the same on that. We stopped that and switched to Haloperidol, but she doesn’t seem any better on that. She has an imaginary cat and has been talking about people in the room - they’re not there. We have halved the dose tonight to see if that will make a difference for the next few days. She is so sleepy too and really struggles to stay awake for more than a minute or so at times. 

My Wife was put on levomepromazine, made her so confused & disoriented, I thought she may have a brain infection or the cancer had spread to her brain, kept saying nonsense, imaging non existent people or things, couldn’t manage a simple conversation. I phoned Everyone medical I could think of for help ( The Pallative team later seemed to criticise me for phoning so many people ) but I was desperate. My Daughter then saw the side effects, which although the frequency was unknown it matched exactly, came off these, but wasn’t for several weeks that the side effects completely wore off. Now back on metachlopromide. My Wife has a 6 weekly injection of Denosunab, prescribed by her oncologist. Although our local hospice is convenient, due to geographic boundaries her hospice is further away and a more difficult journey, luckily our local hospice agreed to do the injections and the consultant has been really helpful and supportive, allowing us both to discuss my Wife’s needs at length. However if my Wife needs day stay, they can’t offer that, so have decided to use the other hospice, which is officially the one she should be using.....but as he denosunab is now going to be administered at home, she will not be going to the ‘new’ hospice so won’t get to talk to a Consultant been told by the Pallative team that if she needs any care or support she must go through the Pallative team first, unfortunately I don’t know how well that will work, I phoned them recently and said my Wife has been stumbling a lot and I am concerned, was told “ it will most likely just go away, maybe she has t been drinking enough” far too dismissive for my liking.....my Wife has a 3 day sickness nausea cycle, which begins the day after she changes her ‘matrifen patches’ been like this for a very long time, had an idea to change half the dose every other day, so avoiding suddenly changing 125Mcg in one go every third day...by using 62 on each arm and changing one arm every other day, both arms still on a 3 day cycle, the present hospice consultant agreed and persuaded our GP who previously Refused, but been a week now and still not prescribed, will phone again Monday to chase it up.......medications is a daily struggle with Pallative care team, GP, pharmacist etc. 

Rant over.....get so so frustrated with the support or lack of it.......

Yes I feel your frustration. I think I will ask what else she can take instead of the Haloperidol because I feel like we’ve lost her already. Physically, she has not particularly declined, but like you say it’s almost like she has a brain injury. 

Maybe try metachlopromide, it’s also available as an injection, which I am able to do if it gets bad, Cyclazine did nothing, my Wife took Haloperidol for nausea some time ago, didn’t work but had no side effects, except kept falling asleep.....these anti nausea meds are rather dodgy.....thalidomide was for morning sickness, and we all know the consequences of that drug