Breast Care Nurses Questionnaire
Breast Care Nurses Questionnaire How widely has this BCC questionnaire been distributed? Is any breast cancer patient able to download and complete this questionnaire?
While patients will all need information and / or support from time to time, it is debatable if appointing more BCNs is the best way to do this. Many patients will tell you that they have a poor relationship with their BCN and prefer to talk to their Macmillan Nurse, the nurses in the chemo ward, their GP or a support group.
It certainly feels more natural to speak to a medical professional that you are seeing anyway, than someone who is an almost total stranger (maybe your BCN was there with a box of tissues when you were first diagnosed but you’ve seldom seen her since).
Those with secondary breast cancer frequently find BCNs totally useless.
I hope that BCC has not already decided to have a campaign for more BCNs in advance of feedback via the questionnaires?
Holey we have 3 BCNs and they are ALL great- regularly save us from going potty with anxiety- MUCH better than forms! dilly
Plus I’ve travelled from the beginning well into palliative care and still regard them as br ca ladies’ best friend. dilly
Hi I’ve been lucky. I’ve had a great BCN who I’ve seen regularly. She even helped when I needed letter from consultant for Incap Benefit people. The district nurses who flushed my PIC line were also great. In fact, the whole team has been brilliant. I know some people have a tough time of it with their medical team and I feel very lucky.
Saffire xx
what questionnaire? I would like to fill this in as contrary to most peoples experiance I found the majority of the specialist bc nurses not much better than useless! Sorry if I offend anyone but I never had any decent practical help or worth while advise off any of them. They are great at holding hands and going “there, there” but I found it patronising most of the time.
Izz
Ditto I also found my bc nurse a bit patronising.
But when the onc and surgeon have a case meeting, she then makes a huge point in telling me that it was at her instigation.
When I was first introduced to her, she said that she would be my friend- and I was so upset by my diagnosis that I told here I didn’t want her as my friend. (I didn’t want to be talked to as if I was a child).
Now as to my McMillan nurse- she is an absolute gem.
And I also would fill in a questionnaire.
However all things considered, the team have been marvellous.
Lambkin
BCN… …we have at least 4 at our unit and i have to say that mine is fantastic…even now she is there for me…didn’t like her at first…but she was there at my diagnosis and has been a tower of strength …she doesn’t beat around the bush…she tells you it as it is…i know not everyone would like that kind of approach…but she’s sympathetic.,though not patronising…when neccessary and gives you a kick up the back side when you need it…i personally think the ones in our unit are worth their weight in gold and are part of the make-up of a brilliant team.
karen
Questionnaire -yes, how do we get the questionnaire. My BC nurse would not know me if I fell down in front of her. She was sitting with my surgeon with something which resembled a smirk on her face (though I’m sure it was meant to be a sympathetic smile -dont know which is worse). She "gave"me information which i didnt ask for and couldn’t handle at the time and i ran away, never to be seen again. Personally I would rather go to the organ grinder -I know i’m being harsh -there are good and bad in every profession, unfortunately my experience was negative.
Cherry
breast cancer nurse questionnaire I am a member of the campaign panel and I received a copy of this questionnaire by email recently. I gave my views of breast cancer nurses, based on my own experience. Maybe BCC should have gone wider and put the questionnaire on this site somewhere. I’m not that keen on breast cancer nurses but I can see it may depend on how you perceive their help and the kind of person you are and what who you get assigned to.
I wanted practical help not someone who looked sorry for me. I thought the sympathy was fake as the woman had only just met me (it was the day I was given my diagnosis) .
She then proceeded to tell me that I knew I had breast cancer didn’t I.
After 6 months of misdiagnosis and being told I definitely didn’t have breast cancer she couldn’t have been more wrong. So I gave mine a wide berth as I can’t stand that sort of sympathy they seem to specialise in. I prefer my real friends to a pseudo friend. She also told me she wouldn’t be there when I might have needed her over christmas and she wasn’t. Since then I have rung her a few times but mostly she’s been on leave. So I can’t say I’ve had much of a service from her.
At one point I asked to for a male breast care nurse as I thought that a man might appreciate my feelings about having part of my breast cut off more than a woman would. But there were no male breast care nurses. Is this fair in an era of equal opportunities? I was treated as if I was mad because I wanted to talk to a man.
I wonder why these nurses should only be available for breast cancer - if they are so important why aren’t they there for people diagnosed with cancers such as lung cancer or prostate cancer which are also pretty nasty to have and pretty common. Or are people with other cancers better able to cope with diagnosis and treatment than we are?
Mole
Anna Wood I’m also a member of the Campaign Panel so have got a copy of the questionairre. I’ve e-mailed Anna Wood at BCC to ask her whether it could be ciirculated more widely…and also to suggest she reads this thread.
Not filled in mine yet…probably because I don’t have strong feelings one way or another…the three bcns I have had dealings with have been very helpful and not too mumsy and patronising (though one of them has a tendency).
Jane
BC nurse quetionnaire Just wish I had the chance to fill in this questionnaire.
When I was dx with invasive ductal cancer in 2003 my bc nurse Jackie, was my lifleline, and still is.
I was going through a flare of Crohn’s at the time and she got my gastro involved -I was scheduled the next day for inpatient treatment for bleeding from the anus. Gastro said bc was life threatening but Crohn’s wasn’t. Guess he was right. as I am stil here today. Ended up with the hospital sending a huge box of Frutijuice nutrtional supplements which Jackie organised. . Kept me alive for 4 months through FEc chemo. when I didn’t eat any solid food. Jackie sorted this all out for which I am eternally grateful. I cannot thank her enough - she was my guardian angel, and still is.
I got steroid induced pyschosis , was almost sectioned, and she helped me come through it. with her always compassionate caring. I have had many problems since dx, but I think we need these specialast bc nurses.Just guess I got a great one.I also have a specialist IBD nurse now who sorts ou my Crohn’s problems. I don’t see what we can’t get these specialist nurses who can help us so much. I am so sorry so many of you didn’t get the care, compassion and attention I got.
Liz
Have to agree With you on this one Izz, mine have not been much help at all. In fact the only time I have had any contact with them was when I was on the ward post op, they came and gave me a leaflet on arm excercises. No explanations, just the leaflet. Nobody has ever contacted me .
My friend in yorks, has regular visits and great support
Hugs
Marge
xx
Iffy Sorry but have to sit on the iffy side of the fence here. All 3 of my BCNs were not much help at all. When asked about minimal treatments one ‘waggled’ her fingers at me and said ‘like cancer the crab, cancer spreads, then you die’ . When asked by my son about op, she described in detail what was going to happen. This I appreciated for mine and my sons sake but unfortunately when I woke from op details were totally different from what she had described. The same one also told my sis if I didn’t accept the first op date they offered me the consult would lose their bonus.
I’ve had another physically shoving a prosthesis into a bra that even my Mum wouldn’t wear and was told originally that BCNs would visit on ward to sort out prosthesis before discharge. I saw none of them and had to ask one of nurses for comfy to take home.
My overall experience is that they need extensive further training in communication and support skills, less attention to targets and at least try to behave like a female who understands
Deb
xxxx
On the fence I’ve had good and bad experiences with them. If I never see the woman who was sitting there with that dreadful, dreadful look on her face the week before my diagnosis (bc and mets) again, it will be too soon. She completely put me off going to our cancer support centre then or since. However, I have had some very helpful, practical and ‘human’ women phone me at home to check various things with me, see me at hospital and generally be very approachable. None of them are secondary breast cancer nurses, which I think there is a need for. I know how many women I have met at my hospital with recurrance or spread, so where is the specialized support for us?
Jennifer.
government targets My bcn also told me my op had to be done a week before christmas to meet government targets. Did my subsequent wound infection and readmission to hospital on chrismas eve affect any other targets I wonder?
Never again,
needless to say since she was on her chrissie hols I didn’t see her for several weeks. that at least was a decent christmas present
Mole
The GREAT value of BCN to me -and to all of us- is when we have another fright.
She gets us seen pronto and is never reproachful about false alarms- so we don’t worry ourselves to a frazzle plus we treated quickly.
I can live without the sympathy etc. It’s action that matters. dilly
BCN Breast Cancer Nurse !
What’s that!
Mine never came near me all the way thought treatment or after.
I’m afraid I also find them patronising. What I’ve found is that they seem to have been given loads of training on how to deal with women who are very vulnerable or tearful, but they are at a loss as to how they should deal with women like myself who are quite strong willed and have good coping mechanisms; a friend I made in hospital is the same as me and has said she agrees. My BCN was very shocked when I told her I wasn’t upset when my hair dropped out as I was expecting it (I also told her I felt hair loss was a small price to pay for health) and she didn’t seem too happy when I said I wasn’t wearing my wig on Christmas day (I had a fab turban). I prefer to direct my questions to my surgeon and the oncologists as they are straight to the point. Thing is, we don’t sit at home talking about BC all the time as we are far too busy with other plans and things we are working on.
I’m also not the sort of person who wants to attend charity fashion shows - I didn’t do stuff like that before I was diagnosed as it bored me. I don’t feel I need to attend group therapy sessions to talk about things either, but get the impression that’s the route they want you to go down. The BCNs seem to spend loads of time organising and attending stuff like that. I’m quite happy not being contacted as I would rather they used their energies for people who really need them.
Janet mine didn’t either [didn’t need her] but every time I had nasty symptom she was available on phone and got me seen quickly- and that’s what matters. dilly