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macmillan nurses, here is my brief experience

daisies
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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

  • Offline in reply to rad

    Your message was strong and said a lot rad. You could get another referral but an alternative avenue is a support group

  • Offline in reply to DarkerDays

    yes, as you say darker days, another referral or a support group would be an idea. sadly another referral would bring me the same macmillan nurse due to the way they allocate the service in my area (thats just the way it goes). I have considered support groups but decided against them, as i have been rejected from a support group because of the nature of my illness. I dont have a womans cancer, and my cancer support group as such is 50 miles away. I understand this but i suppose i chose then to give support groups a wide berth.

    I only really use cancerchat as a source of support. everyone is welcome and the annoynimity allows people to be honest. I feel if i can help someone else then  i can learn from it.

    Rad x x

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    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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    Totally agree. My mum has been diagnosed with cervical cancer. I have been trying to get the nurse to call us since we found out, over 6 weeks ago to discuss pain management. Still no response from them. Either she is on holiday, or away from her desk. From all the messages I have left I have not received a single reply. Last week we had to call the ambulance to take mum to the hospital as the pain was unmanageable. Four different doctors at the hospital all said that we should have contacted the mcmillan nurse instead and all were shocked when we said that we had tried to but had not received any response. I wish these nurses were as good as their PR team.
  • Offline in reply to HHayer

    I’m glad it isn’t just me that’s had issues with these nurses. They always ring back I’ll give them that but I don’t have and never have had, a named nurse. There is a so called team of them and it could any one that rings back. Getting a straight answer is always a problem and usually I get told to ring some one else. 

     

    By contrast, my friend’s husband has been treated in the same hospital for a different cancer and the difference in the amount of support they have received is incredible. May be the one’s I’ve had to deal with haven’t seen the memo. 

  • Offline in reply to rileyroo
    Yes the care from Macmillan does seem to vary. My first experience with them was after my husband was given a terminal cancer diagnosis. While we were at the hospital I visited the Macmillan section to ask for some financial advice but was told that there was nobody there today who could help but if I came back 2 days later I would be able to speak to someone who could give advice or they would visit us at home. When I told her our address, I was promptly told that as it was 50 miles away it was too far away and not even told who else to contact. I was a bit taken aback at this and thought to myself, Well maybe so but we are not too far away when it comes to donations and proceeds from the "world's biggest coffee morning". After we came home I rang my husband's lung cancer specialist who sorted everything out for us. We were however assigned a community Macmillan nurse who visited us twice at home during hubbys 6 month journey. On her first visit my hubby told her that he hoped when his journey was coming to an end he would go to bed and not wake in the morning. Her reply was "well it is lung cancer you have and I don't think it will be as easy as that" Well she was so right but it would have so much nicer if she had just said "well yes that might just happen. Our district nurses were amazing and they arranged for a Marie Curie nurse to come and sit with hubby a couple of times while I got away for a couple of hours, she was lovely. Macmillan always seem to have all the recognition for their work but their support seems to vary so much.
  • Offline in reply to HHayer

    Here's my experience...I refused treatment & was refered to McMillan nurse.Being in alot of pain & getting nowhere with my GP was told by receptionist GP uses paramedic who would contact me...no one did.

    I phoned McMillan nurse a few days later only to be told to contact my GP

    .Gosh

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