Hello wonderful people here,
I am so glad I found a community of amazing people who has gone/ are going through similar experiences and can support, listen and advice in this hardest of times.
I was told I had bladder cancer two weeks ago. Since then I have been torn between denial and despair. I have a million questions for the doctors obviously, but also for people who are in the same boat and who can give me some clues.
i went through TURBT two weeks ago and am still waiting for the results of my biopsy. When they discharged me from the hospital a nurse gave me a leaflet with some phone numbers including McMillans. My main question is:
when and how often can I call them? Is there some sort of rules or guidelines when I can contact them? I don’t want to be a nuisance but I have so many questions and I am constantly in pain… Is it true that “we are always there for you “? Because the phone number I was given is an answering machine. So what are the rules of communication with my cancer team and the McMillan team? Would be very helpful to know
Hi Irinacat and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read that you're constantly in pain but the quick answer to your question is that you can ring your Macmillan nurse, also referred to as a cancer nurse specialist (CNS), as often as you want. When I phone mine, for a different type of cancer, it nearly always goes to an answerphone. This is because they are often in clinics but have time set aside each day to return phone calls.
The online community is divided into different support groups so I'm going to recommend that you join the bladder cancer group which is a great place to ask questions and share experiences with others who have had the same procedure as you.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
