Hello, I’m newly diagnosed and waiting to hear if the cancer in my uterus has spread.
It’s an anxious and turbulent time, as you all know.
My concerns are about poor communication between the hospital and me including delays in getting me in for investigation, not telling me what is happening, changing the Fast Track status for no apparent reason, promised support not materialising, not informing other departments about another health condition and the allocated nurse not returning my calls or her number just rings out.
When I’ve challenged any of this I’ve been told it’s due to the Bank Holidays in April and May……..yes, pretty feeble explanation!!
Is it possible to switch treatment to another hospital ?
I may have to go to another hospital for a hysterectomy depending on results.
Or do I just need to navigate this as best I can whilst being aware of the short comings ?
At the moment I feel I’ve lost confidence in this setting.
I’m feeling lost in the system
Welcome to our community, I hope you find it both informative and supportive.
I am sorry to hear about what you have been going through, I can certainly relate in terms of departments in a hospital actually talking to each other and having more than one condition at the same time seems to defeat some of the systems all together.
Something that has helped us in the past was contacting the patient advice and liaison service (PALS), they can help by contacting the staff to find out what is happening and in our case did manage to unblock some issues, for others we do need to to a bit of self advocacy and it can also be worth getting your GP on the case too though often they get as frustrated with the hospitals as we are.
Sorry not sure what the answer might be to if you can swap hospitals but if you give the helpline a ring - 0808 808 0000 - they should be able to provide an answer to that.
You might like to look at/join our Womb (uterus) cancer forum as there will be many there who will have lots of direct experience they can share. My wife's cancer is different - Leiomyosarcoma - but hers is also believed to have started with a fibroid.
<<hugs>>
Steve
