Dear Minniea and Nanci
Thank you for your recipies and advice. I've passed them on to my sister and hopefully she'll try them out when she's feeling up to it. She was about to try some cauliflower cheese when I spoke to her yesterday, but wasn't holding out too much hope of being able to taste it. I just can't imagine what it's like - being unable to taste anything - and this has certainly made me appreciate everything I eat. To be honest, I don't think she can be bothered preparing turnip, carrots, etc. when she's on her own - but even if she manages to open a tin of 'good' soup, at least she's getting some goodness from the stock and veg. She's been a bit tired and fed-up this week-end and is still waiting to hear from the hospital dentist about going in for the first couple of extractions. She never thought she'd be looking forward to a dental visit so much!
If she's having trouble eating now, I don't know how she's going to get on when she has no teeth. The doc said they would try to get some kind of plate made up, but her mouth is in such a mess that I doubt very much she could manage to wear one. Anyway, we'll cross that bridge when we come to it.
Thank you again for all your help and concern.
Shelagh

Just to let you know that my sister has had all her upper teeth removed - and so far so good, she's experienced no infection in the mouth area. She feels a lot happier now and is not afraid that one is going to become dislodged and she's going to swallow it. They are going to remove her lower teeth in four weeks' time, all being well.
She is eating a lot more now and a very slight sense of taste is returning, though the dry mouth persists. I had a visit with her today and she seemed very calm and content. She thinks she looks like an "old, toothless witch" and that she can't pronounce the letter 'F' properly, but says she doesn't care! She appreciates the most insignificant things now and takes nothing for granted. For the first time in ages, I didn't come away feeling sorry for her - just glad that she's found some sort of contentment.
Thank you again for caring.
Shelagh

Shelagh
Just found this site myself, been a great help. Have you got in touch with the MacMillan cancer support, there

Rolf and Shelagh
This may also help..
WWW.cancerbackup.org/uk
Free phone number for help desk
0808 800 1234
For free information booklets on various cancers, and treatments, etc. Also the desk is manned by specially trained nurses who are very easy to talk to and can help with many issues you may have.
Glad you found us here
Sunshine..love and hugs
Helen

Helen & Rolf,
I have been in touch with the cancerbackup.org site and they have sent me several very helpful booklets. Haven't tried MacMillan yet - I suggested to my sister that she might like to talk to someone who understood what she was going through - but she still insists she can manage on her own.
It's less than a week since I last wrote here and, in that time, she has gone quite a bit downhill. She fell (indoors) a couple of days ago and banged her head off the door - that has really shattered her confidence. Said she just got up too quickly from her chair. Her mouth is once again in a bad state and feels 'like mush' and swollen - so she's more or less stopped eating again. (Maybe the reason for her falling?) Think she has thrush in the mouth - so she's been prescribed loads of tablets again + extra steroids. Hopefully when she gets them tomorrow, she'll start to pick up a wee bit. She was very down on the phone tonight - so different from last week-end. She seems to be cutting herself off from everyone, saying she's nothing to say to people.
I am seeing her on Tuesday, so will try then to get her to speak to someone from MacMillan - though I know that she'll probably tell me where to put the phone number! I don't know if she sees it as a weakness to ask for help - but she seems determined to 'go it alone' for as long as possible.
I wish there was something concrete I could do to help her. All I can do is try to stay positive and upbeat - and be there when she needs me. We don't, however, pretend that everything's going to magically come alright.
Hope you are all as doing well.
Shelagh

Dear Shelagh, I suspect that you are now into the toughest phase of your supporting your sister. It's where I am also with my husband. I am sending you strength. John has fallen several times- it is usually the result of his standing up to quickly or bending down to quickly and his blood pressure drops ,altho is did happen a few times as a result of not enough hydration or nutrition. He now counts to 10 slowly before rising from a sitting position to standing and that has helped alot. I can understand your sister's reluctance to have to socialize or deal with other people. Her energies really must be self directed now. All you can do is be there with her when you can and try to get the best medical supervision for her. Is she on anything for depression? Amy

Amy,
My sister isn't on any anti-depressants at the moment. We did mention them to one of her doctors a few weeks ago, but he seemed a bit reluctant to prescribe them. I visited her again yesterday and we had a really good chat about the 'old days' when we were growing up. It really cheered her up - and we seem to be making up for lost time, when we weren't really that close. One of her cheeks looked really swollen yesterday - but she's developed thrush in her mouth and it may be the infection that's aggravating the internal tissue. I don't know. She was prescribed an anti-biotic last Thursday, but didn't get it from the chemist until Tuesday (her local chemist had 'run out'). So I don't think the delay in starting the medicine has done her any good. She's also on a high dose of steroids again, just for one week, together with loads of painkillers.
She wasn't 'down' yesterday - in fact we were able to discuss her not being here with a laugh. But, as I've said before, it's like a rollercoaster - one minute laughing, the next crying. Our other sister died 8 years ago, so we believe that she's watching over us.
I do hope you and your husband are managing to have some good times also - and share happy memories.
Best wishes,
Shelagh

Shelagh, I always hated rollercoasters as a child, and I agree with you that this ride is like being on one. Glad you got to spend some positive time with her. We are trying to carve out positive time here also. It's hard when they are hurting. Stay strong. Amy

An update on my sister. She eventually agreed to go into hospital for a few days last week to get her medication sorted out. She was in a great deal of pain and took some old anti-depressants that she had kept lying around from previous years - just to get some sleep. The result was that she was out cold for about 10 hours and, when I couldn't get in touch with her all day, I immediately thought the worse. So, she did have 2/3 days in the palliative care hospital and they re-prescribed all of her pills and potions. So her batteries are recharged for another wee while. She was due in today to have her lower teeth removed - but I'm not sure if they would have done this or not because I think she still has a thrush infection. Just waiting to hear. I thought she might just leave it, but she seemed determined to get rid of the lot as they were annoying her no end. It's just one more painful thing for her to go through - let alone the indignity of having no teeth - but she says that she doesn't care how she looks or sounds. Just as long as she gets some benefit.
Thank you to all concerned for such a caring and helpful site. I shall keep in touch, though think I should be moving to another 'Topic' area by now?

One month on, my sister is now in and out of the hospice and currently waiting to have a stomach peg fitted as she can no longer swallow any food. She has good days and bad days - but is quite happy to be in the hospice during the week and then get home for the week-end. We're all hoping that once she gets the peg, she'll be able to take in a bit more nourishment and gain some strength from that, as she's fairly weak at the moment. After this procedure, she wants to come home and stay home - so she's hoping to get a McMillan nurse to call in regularly and has also been promised some aids to help her get round the house more easily. She's started making a Christmas shopping list, so I think she's set herself another milestone. She's had a very poor last month, but seems to have got some of her old spirit back all of a sudden, and was even arguing with me today! Her voice is very husky of course, but she uses it wisely and doesn't talk unnecessarily. Her strength of character is quite amazing - and I hope it stays with her to the end.