Hello, I'm sorry you and your husband are having to go through this. I can only go by my recent experience with my mum who had oesophageal cancer. When we felt her pain was not being controlled or she had other symptoms that were not being controlled we called the 24 hour district nurses. They were able to come out . Mum had her medication chart at home. If things needed altering they would contact the GP. Sometimes they would contact the hospice for advice. Usually there is scope to give more pain relief / try something different.
Its good your husband is due to go to the hospice to get his pain under control but would emphasise from mums experience to you that the team- GP, district nurses and palliative nurses working with you in the community should still be doing what they can to get your husbands pain under control while you are waiting. The worst thing is if you feel alone in this .... you are not and please dont be afraid to call any numbers you have .
Has your GP referred you to MacMillan, Maggie's or Mari Curie nurses? Marie Curie are especially useful as they often look after patients at home during the night to enable caring relatives to sleep.
My husband has the same cancer and is in pain after radiotherapy. Do you have any tips on coping with this please and did you find the hospice helpful?
He can only eat a few mouthfuls. Even yoghurt is a struggle. With the current situation we feel rather cut off from support.
Thought I'd post on here too as I keep losing my messages to you! I have tried to send you a message in the friends bit too.
Sam had support from our local hospice and district nurse team. they offered advice by phone and also sent an OH nurse around with equipment she thought he'd find helpful.
They suggested adding complan to food to help build him up and this was successful with things like Angel delight but don't overdo the powder as it can alter the taste. I also got him some of the small pots of custard and things like creme brulee desserts. gives a variety of tastes but all slip down easily.
GP I'm sure said that you can get liquid paracetomol (apologies if i've got that wrong) but he prescribed dispersable co-codamol for pain relief and they do disolve in a small amount of water so not too much to swallow.
take care of yourself too Ronnie because it's hard coping with all of this on your own.
