Hello
This is the first time I have posted here so hope this goes through!
My Mum was diagnosed with BC stage 2 in Feb and has has mastectomy and also complete lymph node removal (we now await results) and she is 78 years old. Needless to say I am in bits but trying to stay positive and support her all the way.
I am just surprised at the lack of support for her from her designated Breast Nurse - the Nurse has promised to phone Mum twice and not followed through so Mum had sat by the phone all day waiting calls that never materialised - I have also listened to a conversation between them on the phone (Mum had phoned her) and to be honest I found the Nurses attitude to my Mum very patronising - also Mum has had to request where she can buy post-op softies and the Nurse promised to post these out to her needless to say they have never arrived. This is really upsetting me because of course I want ultimate support for my lovely Mum.
I just wondered if anyone else had experienced this or are we just unlucky - I do know that the vast majority of these Nurses are brilliant and just wondered why this one chooses to ignore my Mum.
Thank you for listening.
Hello esbee
Welcome to the forums, this is a very worrying time for you and your mum but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Best wishes
June, moderator
hello esbee
there are sometimes more than one BCN nurse as they can work shifts. I had one early on that i found totally unhelpful but another that was my fairygodmother. Do you have a cancer centre like Haven or Maggies in your area?
I am sorry your mum is not getting the support you want at what is such a stressful time.
Give the helpline on BCC a call they really are fab
rhian xx
As Rhian says, there is usually more than one BCN, so if you are still concerned you could ask to be put on the list for one of the other BCNs. They’re human, and some of them are not as responsive as others. You might need to get your mum to write a letter to the specialists confirming that you are to be told everything about her treatment, so that they don’t break patient confidentiality, but that’s something you would need to discuss with your mum first.
Do give the helpline a ring, they are very helpful and very knowledgeable and will guide you through the best way for you and your mum.
And thank you for being so caring. I know she’s your mum, but it’s nice to see, I’m sure she’s very grateful for your support and even though you may feel powerless, just being there is such a good thing for the person with cancer, you are actually doing a lot.
CM
x
Hi esbee
Most BCN are super, mine is exactly like your mums. Disinterested I would describe her. I had to chase her when she didn’t return my phone calls, which isn’t pleasant when you are so worried and waiting for test results. She was supposed to meet me with the surgeon to discuss my MX and reconstruction (my husband was away and couldn’t come with me) and didn’t show up!
In hindsight I think I should have asked her directly for help and I do think she was waiting for me to ask her (but am I making excuses for her?) - but when I rang her the very first time (this took a huge amount of courage as I’m not great at asking for help and saying I can’t cope) I felt she brushed me off after 10 mins and said ‘well, ring me when you want’. That was it. I never did. The last time I saw her was after my MX in December and she said she’d see me in May. I’ve had no contact with her whatsoever through my chemo.
I’m not sure if you are able to ‘change’ your BCN and ask for a new one. I have got a lot of advice/support from this website and from my family (my mum and aunt both have had BC) and any questions I’ve had have been answered by my oncologist and the chemo nurses. I do feel that I had no emotional support at all, which is what I expected from my BCN.
Your mum is very lucky to have you supporting her through this.
All the very best.
Rachel.x
Hello again
I cannot thank you enough for your lovely responses to my post - the thoughtfulness of you all has made me cry (I was determined not to cry today but reading what you had to say has given me some relief) also I feel humbled because you are actually the ones going through this.
Rachel I was shocked to hear about your experiences and feel sorry that you too have been let down and I think you hit the nail on the head with the word ‘disinterested’ that too describes my Mums BC Nurse and to be honest I was wondering if the disinterest was because my Mum is elderly (but then again at the moment I might be thinking things that are not true).
CM you are right that BC Nurses are human too and I did dither before writing my original post as I felt bad for criticizing them when I am sure the majority do a fantastic job.
Once again thank you all and no doubt I will be back in the near future to revisit this amazing forum.
Esbee x
HI Esbee, I also had real difficulties getting a service from the BCNs, but in the end found one out of the 5 available who was OK reliable, did phone when she said she would etc, so I guess you could check, as someone said before, that thre are usually more than one BCN, and maybe your Mum could have another one.
best Nicola
Esbee- there’s really NO excuse for the very poor responses you have received from your mother’s BCN. This is a highly specialized nursing post with enhanced pay and if she doesn’t like the job she shouldn’t be doing it. It’s just not acceptable to be let down like this…and unfortunately you may be right that your mother’s age MAY be affecting this woman’s response - or lack of it.
(Today I’ve just spent 2 hours with my husband in an NHS eye clinic where we waited for nearly 2 hours for a routine appointment lasting 4 minutes: everyone in the waiting room was pensionable - and from the nurses reaction when we enquired about the delay, it would seem that that length of wait is considered quite acceptable - after all what else have the we over- 60s to do with our lives?!)
Esbee… Complain - or if you feel unable to do that, ask for a different nurse: My BCN was excellent - though as the team leader she was sometimes very busy ‘in meetings’ and hard to contact directly: twice I had to speak to one of her colleagues- who was SO insensitive I think she would have done well in the Waafen SS.
Hi esbee
I am a Bcn and I am a bc patient so have a Bcn too. I had to request a new one cos I just didn’t gel with the one I was allocated as she just didn’t listen. When I had bc a few years before I had a wonderful Bcn who listened and was supportive and Iv never heard a bad word about her.
Hope you can get one you and mum feel happy with.
Lulu xxx
Just had to tell you that my Mums BCN has just phoned!!! (maybe she reads this forum!) - I still thought she sounded (in a ever so pleasant but insincere way) very, very patronising and I could hardly bare to listen to the conversation.
Thank you Topsymo for the advice about complaining - believe me I would if I was the Patient but when I suggested this to my Mum last week the thought filled her with horror as she doesn’t like to make a fuss - so unfortunately I do have to respect her wishes on this.
Lulu it was interesting to read things from your prospective too my Mums BCN certainly doesn’t listen either.
Thank you for your support
Esbee x