CNS

Hi K man,I hope you do hear back from your CNS.I've had no contact with mine since I was diagnosed and if you phone you just get an answering machine.I was disappointed in the macmillan support worker too,he rang once and was very helpful,said he would ring back and I have not heard from him since.I feel a bit let down really.Best wishes for your chemo when it begins.Jane

Hi Harry 

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Hi Kman and Jane,

Hmmm...maybe someone from Macmillan will pick this up? Worth calling the macmillan person again, as you never know, maybe he's gone sick without leaving a note about you or something like that.

It just shows how bad the NHS variation is around the country with some CNSs really great and others uncontactable.

Best to both, Denby

HI k-man I feel so sorry that you and Jane have had such disappointing level of support. The one-to-one connection with my CNS and the trust I feel in her, has made everything much more bearable for me. She works as part of a small team of urology nurses who give the BCG, and Chemo. There are two CNS nurses. They all answer a shared phone. If my CNS is not available (she was recently away for 4 weeks) the other nurses do everything they can to help. Ansafone messages are without fail returned by the end of that working day. They know you are sitting there feeling anxious and waiting to hear, and they think it's important to respond. Everyone should experience this level of good practice. If you can find the energy I'd phone and chase that elusive nurse, perhaps it's just a system breakdown. Thinking of you x