A Very Sad Message about Ulls

Hi Steve,  I have posted a few times on other threads. When I joined this group, you, Ulls and Brian were the first to respond if I remember,  then others have jouined our 'family '.

I'm doing okay and plodding on. R has no more treatment left and psa rising every test. Now at 39. However,  he doesn't appear to have any real worrying symptoms like others. He gets a pain round his neck frequently and we had a visit from a palliative nurse, not Macmillan as we dont have any here, but same thing. She is looking at seeing if he can have Gabantamine for the pain. Otherwise we just have to amble on as we are. He is v frail but manages 2 dementia groups a week which gives me a break to do yet another pile of washing!!! He fills the machine up every 2 days as is constantly wetting his clothes, despite huge nappies!!! 

Anyway,  hope your neighbour problems have eased. Have a great weekend.  Gx

Gina, No more Naughty step (well once or twice).

Glad you are doing ok.  Richards' PSA at 39.  At least he doesn't have any worrying symptoms.  2 dimentia groups a week.  Does he behave himself?

The neighbours are just the same.  Through the week when they are at work and the kids are at school it's lovely and peaceful, actually able to sit in the back garden with a G&T (or 2).

Take Care 

Hi Stevecam at this sad time: thanks for letting us all know. I’ve re-read Ull’s biography. What a Trojan he was. A great loss to our little band of brothers (and sisters).  It must be hard, but don’t let it knock your sense of humour and fun. Ulls lasted much longer than his original prognosis (7 years instead of 6-24 months) and in that time he stocked up on lots of good memories and dispensed loads of good advice and comfort on this site. A true gentleman.  All the best,   AW

 Stevecam Thanks for letting us know. Ulls was a real fighter and a great support to many people here.

Hello Stevecam 

I was so sorry to hear this sad news of Ulls passing. Ulls has been around all the time I have been on the team and has made a really significant contribution to the Online Community. It is clear to see that he provided great support and comfort to so many here.

Please do reach out here on the forums whenever you need to talk. In addition to chatting in the forums where others knew Ulls, you could also reach out in the bereaved family and friends forum.

Our Support Line is also here for anyone who needs a chat. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

Thank you for letting everyone know. Sending all our love to both you and Tracey, take care of yourselves at this sad time.

Good morning Gina Sidsmum 

glad your having some time to yourself even doing the laundry as in an odd way can be therapeutic.  It might be worth checking with your local continence nurse as they may offer a different product which may help. As products aren’t a one fit all situation. 

take care & huge hugs to you both 

Liz & OH xxx

Thanks Liz. I have asked them and all they can do is give us big pads for day and night and even these seem to leak . x

Hi Gina ,

please go back and tell them to try different products such as Tena as they do have scope to try different brands . If they stick to the same old . Just explain that you will end up struggling with your husbands skin integrity and need to try and maintain it. If they still are awkward ( easy life syndrome) 

Get in touch with your  local NHS complaint department and ask for help . Another option is speak to your husbands oncology support network and ask them for support. 

it’s hard enough without going through hoops 

hugs 

Liz & OH xxx

Oh no! I spoke with him a while back. I thought things were going well. Please send my condolences, I didn’t know him that well, but again this is someone that helped me adjust in the early days. 

Unfortunately,  been there, done that etc. We're on Tena so not sure anything else can be done. He's like a leaky hose all the time. In one hole and out the other!!! X