Shelagh,
Home hospice is available there. In the US they can come to you and you can stay at home. They send out visiting nurses, bathers, counselours, dieticians, etc. They will provide whatever equipment you need to be comfortable. They will insure adequate pain management. In some instances even provide on site respite care for the caregivers. It's actually less costly for the government to pay for this than hospice in a dedicated facility although those exist here also.

Does she live alone? She probably should have 24 hour care. She will need a live in caregiver. Very few of us were able to go it alone. Family and friends will have to "step up". This requires a network approach.

See this link for UK questions about hospice care: http://www.hospiceinformation.info/whatishospice/questions.asp

According to this site Hospice care in the UK is organized very much the same as the US. They probably just want to meet with her to put together the appropriate resources for home care. I have personally been through this twice with my stepmother and father and the hospice people were fabulous. The only reason why she would be kept in a hospice facility is if she required constant medical supervision (because her medical issues are beyond the knowledge or skills of a caregiver) or if she didn't have a caregiver at home who the hospice people can train.

If she could add some Carnation Instant Breakfast to the milk that would add quite a bit more calories. Surprisingly, I never lost my taste for coffee so I made a lot of Hagan Daz coffee flavored milkshakes and they have an espresso flavored Carnation instant breakfast. She needs to experiment with different tastes. The taste buds don't return all at once. It's a "phase in" process. Typically salt taste is the first to come back and sweets are last.

Yogurt with acidolpholis will help inhibit thrush as well.

I don't believe that there is much in the way of medication that will actually stimulate salivary function.

Drugs like Ethoyl will protect the salivary glands somewhat during actual radiation but it is a very daunting treatment and most can't tolerate it. It's not effective for post Tx.

Most of just carried a water bottle everywhere we go and consumed basically liquid diets or foods like soup, pasta and things with lots of sauce or gravy. Meats were one of the hardest to swallow. I still have problems with meats like overcooked chicken or steak. I basically order beef "still mooing".

Biotene has a variety of products that will help with dry mouth issues as well. Go to the hompage and do some digging around there is a ton of information there.


Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)