It’s National Cancer Clinical Nurse Specialist day on 15th March 2023. Last year we shared some lovely quotes from our community, and it was received really well.
This year we want to do the same and share quotes/stories of how your CNS helped you. Extra points if you also share a picture/video!
You can comment below with your experiences or If you would rather share your experience privately, please email hcpnetwork@bloodcancer.org.uk
*** If you rather we anonymise your message on social media please let us know ***
Thank you!
Khadijha
Clinical Engagement Manage
Blood Cancer UK
Ditto. There is one at my hospital, but she hasn’t been of any benefit to me whatsoever, and has never given any support. Even my surgery nurse thinks that I should report her to the head of oncology, as she isn’t doing her job properly, and has only ever fobbed me off on the two and only times I have spoken to her on the phone.
My nurse specialist has let me down so badly in so many occasions …I have lost count the times I have been waiting by the phone because she was supposed to call me…for hours on end. Her excuse, when I finally managed to speak to her: she had forgotten! She is always in a hurry. I have the feeling that she is not listening to me. I have thought of making an official complain about her, but I am worried that it will go against me. I am sorry, perhaps I have been unlucky but she was allocated to me and I don’t really think that there is much I can do to change to someone else.
Thank you for sharing, I am sorry to hear that you’ve not had a positive experience with your CNS. As someone with blood cancer you have a right to be given a key worker. Someone in your medical team should act as your main point of contact for everything to do with your medical care and wellbeing. If you can’t get through to your CNS there may be other options to explore. Depending on where you’re based, do you have a local Maggies/ Macmillan cancer information centre you could contact? Or perhaps there’s a general nurse or chemotherapy nurse that managed your care that could help? Could you mention it to your consultant at your next follow up? Our support team are to talk through options to get you the information and support you require.
As always our support is here for you all, should you wish to talk about this thread further. You can call us free on 0808 2080 888 to speak to a member of our trained blood cancer support team in confidence. Or email support@bloodcancer.org.uk.
