Experiences with

Palliative-care

We’ve had a call from the hospital that my brother is being referred for palliative care ? Does this mean the end for him ? He’s been on maintenance Nintendanub for 4/5 months and seemed to be doing well - I could speak to him - his coughing and breathing seemed to be vastly improved.

Has anyone got any experience of managing fatigue during palliative care? My mum is struggling so much with fatigue and we are getting conflicting advice. She is on a blood thinner (Apixaban) after a blood clot which has now cleared.

This study highlights the benefits and efficacy of getting involved with palliative care sooner rather than later and using telehealth where possible: https://www.practiceupdate.com/c/167106/32/1/?

Left to palliative care, no surgery or bypass offered does this sound right to anyone ? Does anyone know of an ERCP specialist? Were South East England

We have a home visit booked for this afternoon for a palliative care plan to be put together. Does anyone have any words of wisdom or tips for us please? Thank you in advance x

She was transfered to be treated at a local hospital which the oncologists board decided she will have palliative care only. My dad said the oncologist didnt offered radioteraphy or chemioteraphy, he was so shocked didnt ask why. She is at home now with prescription of Keppra and dexomethasone.

My Palliative care nurse and I met for the first time last Tuesday morning at the start of the Skybridge, chit chatted and went to the starting metal strip. We met previously several months ago on telemedicine where she interviewed me prior to the doctor.

BTW I caught some heckling about being on palliative care and racing my palliative care nurse on our hospital’s sky bridge several months ago . That’s ok I was joking yesterday evening with my APN about racing one of my young doctors next week in a power walk.

Hello all, Before I get into my post, I’d want to note it contains content about my mums end of life care. I do not want to worry or upset anyone so my post is more for those who are either end of life themselves, or have supported a loved one at this stage. If you are a family member, I kindly ask

Also we have been trying to get him on the Palliative Care list and did not know how to go about this. When the Paramedic came we told him about how we have had to moan/knock on the doors to get the OT, Speech & Language back on board.

After my family and/or myself were told on 4 occasions that I was going to die and I was on palliative care only, we wouldn’t accept their prognosis. We never gave up! I’m now 7 months post transplant and feeling great.

Dad is currently on palliative care at home. Radiotherapy would only acerbate his symptoms. My Dad is an otherwise fit, healthy, positive and cheerful person.

Never knew until I was told that Buprenorphine Patches between 10 & 20mg are used also for palliative care 😞 A totally sad reality 😭 Have checked with other pharmacist & medical consultants so he is definitely telling the truth.

We have been told this is now palliative care husband also has Alzheimer’s, is there anyone out there who is in the same boat? I am struggling with dealing with both these, anger, frustration, sadness, fear, feeling my life is over now which is incredibly selfish feeling for me to have I think.

She is now at the Palliative care stage. It's heart breaking watching her decline.

I would prefer to take the sublingual tablet instead but my palliative care doctor says no I must have the patches. I don’t know yet what dose they will be but she says they are a a low dose to start with but they may increase if needed. She knows about my PLMD and says they will help with them.

We have spoken to Macmillan and palliative care but they have not been very helpful in terms of support for him at home. Palliative care said he could get a nurse in once a day. We can’t continue to stay with him forever though. I have 2 young children. Does anyone have any advice please?

They involve the palliative care team if no improvement. Three weeks ago she was still able to be hoisted into a chair, she's bedbound now. Sleeping much of the time. I have told them I have failed her as she didn't want a peg fitted to avoid this prolonged suffering.

To be referred to oncology for radiotheraphy , if this makes me ill will just be left with palliative care treatment. So have to have physio in a fortnight then change over to oncology.

I am getting a referral for a palliative care doctor who hopefully can manage my pain without making me feel like a criminal. There was some mention of immunotherapy and some possible trials but nothing concrete or followed through on.