Palliative care for how long?

HI

so sorry to hear about all that's going on.

My late husband was on Dexamethosone at points during his 3 year stage 4 brain tumour journey. The dose was varied both up and down as needed. If you feel 2mgs is too little for your husband, speak to his medical team.  There may be a medical reason for not maintaining the higher dose but if the quality of life has dipped by dropping to 2mgs, I'd call this out.

G was on a much higher dose at one point towards the end of his journey and did develop steroid induced diabetes so please be mindful of the impact of taking these pills.

sending you love and light and hugs

Wee Me xx

My hubby died lat week almost 3 months to the day from being diagnosed with oesophagus cancer. He was on a morphine syringe driver right from being diagnosed as he was unable to swallow tablets. He came off the driver for a couple of weeks & went onto tablets but after he started being sick he went back on the driver as they couldn't guarantee he was getting enough morphine in his system. He was put on dexamethazone to help his appetite in tablet form after the stent but again they had to stop giving it to him because of him being sick.

He ended up back on dex when he started getting reaction in his site of his line due to cyclazine anti sickness meds..it kept going red & hard & they had to keep moving it. They used to flush his line with dex before attaching the morphine & cyclazine syringe. When he ended up back in hospital for the last time the took him off the dex but the palliative team made them put it back on. He stayed on the dex until the day he died. 

If someone is on palliative care I feel it shouldn't really matter what meds they are given or for how long, especially if its to ease symptoms & make them comfortable.  

My hubby said he sometimes felt he was a guinea pig as they kept chopping & changing his meds..I used to tell him that the palliative team are just trying to keep him out of pain & what works for other patients might not work for him..its just trial & error.

I agree, so much treatment is trial and error. My husband had new or different meds almost daily towards the end. Dex didn't work for him but then I wonder why he wasn't put on it earlier, he went on it when he was already really weak. 

His cancer was also rare and very aggressive. (Sarcoma). He got 3 months from the time histreatment was stopped. 

Its always worth asking the drs, care team, whoever is closely looking after him why he can't have the higher dose. There could be a good reason but you do need to understand why.

Keep talking, it helps.

Our problem was mainly with the gp refusing to do repeats of the prescriptions that the palliative nurse prescribed. I was forever on the phone to them. Hubby was on 50mg of morphine & oramorph for breakthrough pain but the gp would only prescibe 1 box of 10 ampoules that would last 2 days & the smallest bottle of oramorph...they kept forgetting to put the water on the prescriptions that the morphine was mixed with. It got to the point that the District nurses & palliative nurse were emailing them but I dont think they ever read the emails!!They didnt even read his discharge notes from the hospital with the list of meds that they had sent him home with. They wanted to know why he needed morphine!! I was quite blunt with them & told them was due to their negligence that he was dying. They were supposed to be doing an investigation as to why he wasn't put on the 2 week cancer pathway when he originally went to see them but I never heard anymore from it. I may not have made much difference  to the diagnosis & the time I had left with him.But I will never know.

Oh Detty, I am sorry you had that experience. Our district nurses, doctors and hospice team very all very joined up. It was only at the end when he pulled the syringe driver out and we had to wait for it to be put back in. He had a morphine patch that seemed to work.

It was more the hospital treating him that were so slow and with such an aggressive cancer, I feel they should have moved quicker. Bit Ill never know either if it would have made a difference. I still wonder if had been 20 years younger, would he have treated quicker?

Thank you for taking time to respond to my  concerns. I’m so sorry for your loss n what you both went through. This whole this is just awful. 

I’m so sorry for your loss. Thank you so much for replying to my comment. I’m sending you, your family n friends comforting wishes.