Gosh I feel very privileged. I live in rural Suffolk and my surgeon is based in a local DGH ( she is a force to be reckoned with ... and this may be part of the success of her team!) . There is a team of BCNs and they are really on the ball ... they have been really attentive and helpful. cannot praise them enough.
Reconstruction nurses at Norwich have also been really helpful ...really appreciate that as I have had a number of problems (haemorrhage,2nd trip to theatre,wound problems Etc) and they are available by email or by phone .
Having been a specialist nurse (in a completely other specialty) I would suggest that the success of Nurse specialist teams often depends on how important the consultants think they are!!! Without them driving the team approach (including nurses,tattooists,mental health)it will often fail.
It may be worth asking your specialist why you don’t get support from a Specialist nurse!
great that we have charities such as this one to support us through this confusing and challenging times.
Thanks sally, it feels better to know I’m not alone! I did ring my gp in tears once & he referred me to the local hospice! They did get in touch but I strongly suspect they don’t approve of a non-terminal person using their facilities etc and tbh I would feel comfortable going knowing I was taking resources away from someone who really needs them. When I’ve rung the gp back they’re not particularly helpful, they didn’t even know I was having chemo !
ive signed on for the moving forward course but it starts in November and I think I’ll be in the middle of rads then and the next ones are March next year- I’ll be committed by then!
anyway I did do a self referral to mind matters and someone is ringing me Thursday, I’m half minded to really lay it on so they take me seriously and not as some neurotic self centred mad woman!
however I feel very much like you, ignored and unwanted by the nhs and it’s way too late anyway!
Thanks so much for the reply and I hope that everything is going as well as can,
My 'assigned' BCN retired the day before my treatment began, so the support I was given reason to expect was gone almost immediately. Think would have been a very different 'journey' if I had had the BCN support I was promised by the surgeon at point of diagnosis. NHS cuts? Or simply lack of nurses who want to take on the challenge of the role?
Hi Ruthie2, you are the first person I have have heard of in the same situation as me. There were no bcns available when I was diagnosed, I saw a private surgeon at a hospital that was trying to recruit one, so no help there and they had just had a change of charity at the hospital where I had radiotherapy so they didn't have one either! I didn't even know what a bcn was for but after going through everything on my own for months I broke down and begged a for help from a bcn at the local NHS hospital. She refused as I 'had made my choice to go private'. In the end I asked my GP to refer me to the NHS, you could try this. It hasn't really worked for me, as I am not part of the NHS 'family' but it might work for you. It is so important to have a bcn as they can help with all sorts of info and support not available elsewhere. And you desperately need to speak to a human, face to face! I learned everything at a Moving on after Cancer course run by Breast Cancer Now. It was the first time I met anyone in the same boat as me and was a life saver, but it came too late really, there was so much I should have known already if only I had access to a bcn. It still didn't resolve the total isolation and desperation of coping without support. I know how you feel so try and get a GP referral and then you can possibly get some help from other charities too.
Hey hey Cazzy here, I don't have a bcn however I do have a contact number u can ring with any g questions I need to the oncology unit between half eight and five if not the ward after this times oncology ward I also been assigned a macmillan for the nurse which is amazing help xxx
No breast care nurse or named contact for me, I have needed one so very much at times when I’ve had meltdowns and needed to talk to anyone!
apparently because I’m being treated on the health insurance I’m not eligible for a Macmillan nurse or any of the nice ‘extras’ you get on the nhs automatically, you have to fight for them and tbh it’s hard enough without that.
would I go private again and save the nhs upwards of £15k for surgery chemo radiotherapy etc? Probably not.
Here in Sussex, you are assigned a BCN. She may be one of a number of nurses in the team and you might speak to a different nurse each time. I have used them 4 or 5 times to clarify a point or to get some advice. I ring them in the morning, leave a voice recording and they always ring back during that day. Sometimes they are on the phone to me for over 30 minutes. One kind nurse offered to see me before her working day started so that my fears could be allayed. They all know what has been said to one another and their note-keeping is excellent. They are amazing people. That said there is usually one person that you gel with over another. That's just human nature.
I think with today's underfunded and understaffed NHS, we just have to be proactive. It's only natural to want those caring for us to think for us on occasions and know to contact us, but they have so very many to look after. We just have to be prepared to keep our own notes and phone up the relevant clinicians when we need advice and help.
My own BCN is excellent. She always phones back promptly when I contact her office. I have also had extremely good support from the specialist nurse I spoke to on the Breast Cancer Care helpline, 0808 800 6000; I was given the number along with hospital numbers immediately after my diagnosis.
We just have to keep trying.
I wanted to post a question: does anyone still have a breast care nurse at Poole General in Dorset? There used to be a team there who were quick to ring back, though I didn't have an assigned nurse. (I think I fell between two stools as I had my op at the private hospital nearby but my rads at the NHS General.)
I rang the helpline & left a question a week or more ago, but no-one's got back to me. I feel quite worried about this, as there was a breast care nurse at the private hospital but they've made her redundant! I feel like I've got no support, which is how it was before someone said to me that I was allowed to ring the ones at the General.
I hope you're doing well with your chemo.
I'm concerned to hear of your lack of a BCN, and support. It may very much depend on your Area Health. If I were you, my first port of call would be to speak to your consultant, to ask about this. Also, have you contacted the Forum "Helpline"?? Failing that, I'd go in person to your BC dept., rather than phone, explain your situ and ask to speak to someone in authority, to have this conversation with. I didn't need chemo, but I did have BCN's throughout both of my BC's experiences and ops, to discuss things with, right from the beginning. I can't see why chemo should be any different, and not provide you with such. Failing that, I'd go to your nearest MacMillan centre, and discuss it with them. They are a fantastic source of info and support, so may be able to point you in the right direction.
Good luck with it and please let us know how you go on.
Hello again, Minnien,
Sorry to hear that you feel so unsupported. It is a lonely journey at times isn't it. When you say that you have no support whatsoever, are you referring to your feelings about the medical side or are you saying you are totally on your own. With no family, friends or community support?
I just wanted to clarify that the nurse I adopted as "my BCN" was not around on the chemo ward/did not administer chemo so I didn't tend to see her or expect to see her at chemo sessions. I also had planned chemo review with senior nurse at chemo ward a couple of times as well as appointments with Oncologist. (Mind you I had a very amenable Onco who I could email or who would arrange extra appointment to talk through things if needed or just let me rant and swear when things did not go to plan. Swearing is a little mentioned chemo side effecct).
I would ring up the nurse who was present, or the breast clinic and ask what the usual practice is at that hospital for breast cancer patients. If they do not have a named nurse system then they may have a breast care team of nurses for people to contact.
How is the chemo going. I hope it is all going to plan and you are managing any side effects. There is a July chemo thread in this section if you want to join it. There is also the free helpline for advice and support and they always try to help in the best way that they can.
Wishing you all the best x
Thanks for this - When i first met the oncologist the nurse present said she would come and see me when I had chemo - she didnt bother and I havent seen her since
Its been a different nurse I have seen every time I had chemo so no continuity......
My problem is that I have had no support whatsoever and I wondered if there was theme
I was always confused about who was my so called BCN if anyone! When I first went to the hospital Breast Clinic I was sort of allocated somebody but, to cut a long story short, I binned her so to speak as I had to almost force an apology out of her due to an error on her part. I did not think medical arrogance was a good basis for a constructive professional relationship! However, if I had felt the need then I would have just rung up the clinic and ask to speak to any of the breast care nurses.
I also had chemo first and at my first Oncology appointment, there was a nurse present who really became my breast care nurse. So any issues with chemo or other queries after chemo etc I put them to her. Some of our communication was also via email which I found very useful (god love her I noticed she was even responding to things when she was not at work!!).
If you do not have a named contact and would find it useful, then perhaps contact the breast clinic/oncology and query how they usually manage this as they should surely have something set up.
Best wishes to you x
Does anyone not have a BCN? I am having chemo before mastectomy and don’t have a BCN
is anyone in the same position