Not happy

Hi Wilkie, I am so sorry that you have had a poor response from the nurse and she wasnt supportive. Have you had the results of the pet scan & mri  yet ? How soon is your appt to see consultant ? My heart goes out to you, the waiting and not knowing is just awful. It may be helpful to you if you were to write down a list of questions for your appt , have you been told about all the treatment options. It may also help you to chat to macmillan helpline to share your fears, ask them to help you compile a list of questions . I wish you the best and hope you stay in touch with the forum. there are many wonderful people on here that have wide range of experience with bladder cancer , that can help you xx

I’m so sorry your nurse wasn’t supportive.Mine was like that and it is depressing when you most need support.I hope something can be done to help.Angela’s suggestion to write questions is a good idea as it’s not always easy to take in all the information.I took my sister in with me,an extra pair of ears is helpful.Sending hugs.Love Jane xx

I should get all the answers Tuesday when I see specialist again it's just the waiting it was last November when I was told I had the cancer it's so stressful waiting thankyou for reply Chris x

I always take my partner when I met my surgeon he was very good explaining things but it's just the waiting love  Chris x

The waiting is awful Chris,I do understand.Love Jane xx

Hi Wilkie, sorry to hear about the useless oncology nurse. My CNS is wonder woman and has been my biggest support throughout, which I have really needed as I live alone. However Tuesday is only 4 days away....(I know that's easy for me to say and much harder when you await results xxx) so hope you can pass the waiting time treating yourself to anything you fancy. Wrap up and go looking for snowdrops? Snuggle in and watch escapist tv? Big slice of iced lemon sponge? Currently my top 3 indulgences  Sending a big hug. Let us know how Tuesday's meeting goes? Hx

Hi Wilkie 

The waiting is an incredibly difficult time to go through, and I think we all feel that very keenly. I have sometimes waited weeks for results or a plan and the waiting was torture. I felt I couldn’t get on with anything and it was very stressful. 

In my own case, I didn’t find out anything from the nurses in advance of appointments-I always had to wait for a face to face with consultants or surgeons to find out more, and I’ve had both good and not so good news at different times, but not over the phone. 

It’s disappointing to feel unsupported during this time, but the nurse might not be authorised to tell you anything specific over the phone. Or they may not have all the information needed if they are not aware of all the scan results for example, or don’t know fully what the plan will be going forward.

I found it better to see the actual consultant/surgeon to explain everything face to face. As the ladies have said, it’s a good idea to go with questions in advance of the appointment- I went for one appointment with a full A4 page of questions which were answered one by one which was very helpful for me. 

You’ve said your surgeon was good at explaining things, so that’s a real positive-not all of them are! It’s just a few more days to get through to find out more from the expert and it will hopefully feel better to have a detailed plan based on all your results going forward. I would have found it difficult if the nurse had told me something I either didn’t understand or didn’t want to hear in advance of sitting down to have everything explained fully to me. 

Sarah xx