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.

Would appreciate any suggestions on palliative care and coughing. Thank you 😊 xx

mum seems to be deteriorating daily over the last month. Her left arm is rigid and stays by her side, her posture is slumped over and tilted to the right, her speech has more or less gone. She sometimes has an excess of saliva but still appears to be able to swallow. This week I thought she looked as

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

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/?

Speaking to palliative care today but would love to connect with other families who have had some success with the treatment. Mom is the primary caretaker for dad who had a stroke 2 years ago and is partially paralyzed, and they both want to live independently at home.

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.

I was diagnosed with lung cancer and brain mets in 2014, l was told l would need palliative care. Needless to say, lm still here lol. I had a partial removal of my left lung and a tumour removed from my brain plus radiotherapy.

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.

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

Does anyone know what palliative care options there might be? I will of course phone everyone I can once the world opens up but for now I’m at a bit of a loss.

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.

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.

V best friend in Seville, Spain..with PSP end stage...there is NO palliative care avail..i am senior pall care nurse from UK.Recent DRUG CHANGES..VIA PEG TUBE INCLUDE; OLANZEPINE INCREASED FROM 5MGS TO 10MG...AT SAME TIME STARTED V HI DOSE AMITRYPTILLINE 50 MGS...SINCE THEN MY V DEAREST FRIEND IS ' KOSHED

Based upon reports I’ve read here on the group, a while back , I asked my palliative care specialist to try transdermal estrogen patches.

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.

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

I’ve always said I believe I will be cured (which I am not yet) despite pigeon holed by my oncologist and hospital system in palliative care. I was also given a year to live and like many of you I’ve exceeded their expectations and now it’s 2 1/2 years.

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.