Cancer Research UK main site
  • Replies 17 replies
  • Views 5968 views
  • Users 0 members are here

macmillan nurses, here is my brief experience

daisies
Offline

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
  • Offline
    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. 

Reply
  • 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. 

Children
  • 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.

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.