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
  • My wife's MacMillan nurse has been ok. First time we met him (after Janet's operation on the colon) was weird..."Hello I've been allocated as your MacMillan Nurse because you had Cancer of the bowel. I'm actually discharging you because you are now cured".  That went with the surgeon saying, in the post-op consultation after an emergency operation to remove an obstacle from the colon: "Good news, we've removed your cancer and it came away quite cleanly." Janet: "I didn't have cancer though..." Surgeon: "Ah, that's the bad news, you did."

    Since a metastasis to the liver was (belatedly) discovered, the (same) Macmillan nurse has been helpful on the couple of times we've had to contact him.

    Jan's first chemotherapy treatment was so awful that she was ready to give up the whole process in favour of palliative care only. Not only did he manage to give emotional support to help Janet through that darkest of times, he also persuaded the Oncologist to call Janet on the same day, offer her an appointment and promise to adjust the dose of chemotherapy until they found something more bearable. It that sense, as a single point of contact who could co-ordinate the whole or any part of the care team into doing the best for Janet, he proved his worth.

    Good and bad experiences with any professionals I guess. Your MacMillan Nurse seems to have missed out on some parts of the training.

    That's not necessarily a problem if the rest of your care team are good to communicate with, or even if just one of them is. If you're getting the standard lack of communication from the rest of your care team AND your MacMillan Nurse is off-hand and uncommunicative then it must be awful.

    Hope things get better

    Russ

Reply
  • My wife's MacMillan nurse has been ok. First time we met him (after Janet's operation on the colon) was weird..."Hello I've been allocated as your MacMillan Nurse because you had Cancer of the bowel. I'm actually discharging you because you are now cured".  That went with the surgeon saying, in the post-op consultation after an emergency operation to remove an obstacle from the colon: "Good news, we've removed your cancer and it came away quite cleanly." Janet: "I didn't have cancer though..." Surgeon: "Ah, that's the bad news, you did."

    Since a metastasis to the liver was (belatedly) discovered, the (same) Macmillan nurse has been helpful on the couple of times we've had to contact him.

    Jan's first chemotherapy treatment was so awful that she was ready to give up the whole process in favour of palliative care only. Not only did he manage to give emotional support to help Janet through that darkest of times, he also persuaded the Oncologist to call Janet on the same day, offer her an appointment and promise to adjust the dose of chemotherapy until they found something more bearable. It that sense, as a single point of contact who could co-ordinate the whole or any part of the care team into doing the best for Janet, he proved his worth.

    Good and bad experiences with any professionals I guess. Your MacMillan Nurse seems to have missed out on some parts of the training.

    That's not necessarily a problem if the rest of your care team are good to communicate with, or even if just one of them is. If you're getting the standard lack of communication from the rest of your care team AND your MacMillan Nurse is off-hand and uncommunicative then it must be awful.

    Hope things get better

    Russ

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