macmillan nurses, here is my brief experience

I have often read macmillan nurses are wonderful but mine makes me feel a nuisance and I have only spoken to her twice in 2 years. She just seems cold and lacking in human understanding of what we might be going through. 2 years ago I had bladder cancer and have had regular cystoscopy and had just got to the 2 years and thought I had made it and was really shocked to find there were red spots in the bladder that may be more cancer growing. I realise theirs is not an easy job and they have to keep a certain detachment but I do not feel supported by her at all, maybe I am just being over sensitive but then this is a difficult time for me. This is part of my conversation with her. Q Can you let me know the results asap A Yes. I am on holiday next week so you will have to wait until the week after, you can ring me then. Q Can someone else give me the results I really do need to know A Mmmm, you could call my colleague.. Q waiting for the results is the hardest of all A well you will still have to wait for treatment anyway Q I was really upset  when I found the cancer may have returned. A Oh!  Really! Q I was really shocked yesterday. A Well I told you it could recur! Q What might the treatment be if it is the same as last time A You will have to wait and see Q I read on one of the websites that if the cancer returns and its the same type etc as before then after surgery its normal to have 6 weekly visits to have chemo in the bladder. And I really would like to know what the next procedures might possibly be A You will just have to wait and see Q But is this the usual procedure if the cancer is the same as before A yes

Parents
  • I'm a bit puzzled as to why you are addressing questions to her that you should be asking your consultants or doctor  unless Macmillan nurses have that role My only experience of a Macmillan nurse was when my mother's  cancer had become terminal we had one visit to introduce her then she went on indeterminate leave we had a call ten days later to tell us this then we heard nothing more

  • thanks Rodis, oncology nurse well not sure who this might be because I first had breast cancer then 2 years later bladder cancer, never had an oncology nurse just the one for breast cancer and then this macmillan nurse but you know what I am going to ask for someone else because she is rubbish at her job.

    darkerdays when you have had breast cancer then a secondary bladder cancer and go regularly for cystology to the clinic you do not see the consultant and so have no choice until about 3 weeks from now when I will be booked in for surgery, then! I will speak with the consultant.  because you have not had these problemsyou do not understand how it works but you know it is scary because you have so many questions and no one to answer them and that is why I have no choice but to ask the macmillan nurse who is not very good at her job. And to be honest yours sounds rubbish too and I am sorry you did not receive the support you and your mum deserved at this very difficult time.   others have told me how great they were for them you and I were unlucky.

  • Hi daises, I was allocated a breast care nurse and when I had secondary cancer in the thigh I still phned her. She told me that she was still allocatted to me even though the breast cancer had been treated. I did have problems with getting her to take my bone pain serious before I finally had a diagnosis of secondary cancer. Went to PALS to complain but they were more useless than the nurse! Eventually i spoke to her and told her how let down I felt. Now she is brilliant. Sometimes we have to be bloody minded. which is difficult when when we are going through yet more treatment. My oncologist is great, but he said "us professionals need a push now and again" This is so true! I appreciated his truthfulness.

    Take care dindin

Reply
  • Hi daises, I was allocated a breast care nurse and when I had secondary cancer in the thigh I still phned her. She told me that she was still allocatted to me even though the breast cancer had been treated. I did have problems with getting her to take my bone pain serious before I finally had a diagnosis of secondary cancer. Went to PALS to complain but they were more useless than the nurse! Eventually i spoke to her and told her how let down I felt. Now she is brilliant. Sometimes we have to be bloody minded. which is difficult when when we are going through yet more treatment. My oncologist is great, but he said "us professionals need a push now and again" This is so true! I appreciated his truthfulness.

    Take care dindin

Children
  • Hi Dindin thanks for the reply, I will give my breat care nurse a ring monday and check this out, there are 3 of them and they were great and my oncologist is the best ever.  earlier this year I had a suspect growth that turned out to be nothing and I wasnt due to see my oncologist but prior to my results i phoned his secretary with my concerns and the lovely man called me at home that evening.