I have to say i have only had good experiences with the bc nurses in the both hospitals i attended, they came to see me everyday during my stay in hospital and phoned me a few weeks after i left to see if i needed anything doing for me
and to ask how i felt, and the bc nurses at the hosp where i had my treatment were always available and couldn,t do enough and although i didn,t really use them it was good knowing they were available to me if i needed them.
The only contact I had with my BC was on initial diagnosis when she was present in the room. After that I did ring a couple of times and got another BC who was very nice, but it took about a week for them to answer my calls as I had to leave a message on an answering machine, so for anything urgent, would be useless. I found out the other day that my BC nurse left months ago, so good job I haven't needed her. I think to have someone who would answer the phone immediately, even if they can't give you an answer there and then, would be so much more reassuring than leaving a message, never knowing if and when you might get a reply.
Thank you for replying. I'm on a pilot project for people who have just finished cancer treatment - a nurse phones every few weeks. I think it's an excellent initiative but have suggested to the hospital that support is needed from the day of diagnosis - that's the real hour of need, in my opinion. There is very little support and the BCNs are too stretched and have clinical/admin tasks. I have suggested that more nurses are recruited to work alongside the BCNs to offer telephone support to patients undergoing treatment.
I am shocked that some of you do not appear to have regular and easy access to a BCN. At my hospital there are two BCN's, and one or the other have been present at diagnosis and at each of my 3-weekly consultations with my oncologist during chemo and currently during Herceptin. All breast cancer patients see the oncologist prior to each treatment.
From the outset I was given a card with their names and "bleep" numbers at the hospital, and I can contact them easily. They have been there when I was upset post-operatively, and to drain seromas, fit me with my prosthesis, help with advice about getting bras and swimsuits pocketed (my hospital offers a free service for this), and have been invaluable in all sorts of ways. They also run a clinic for mild cases of lymphoedema, and run a Bosom Buddies support group.
I thought everyone was allocated a BCN nurse or nurses, and I would have thought that two big hospitals like Guy's and St. Thomas's (where I had my radiotherapy) would have had them.
Like most of you I was given a card with numbers for contact, but apart from the intial diagnosis and post surgery, none have ever contacted me. One of trhe BCN runs the lymphodema clinic which I was referred to, and she is excellant on that side of care
There are four BCN at my hospital but given the amount of patients there are this is not enough. I have their email addresses and phone numbers. I see one every 6 weeks in the lymphodema clinic and went through a stage of seeing another one every month when i was suffering with very bad depression
I see more of my Macmillan nurse and also the Dr at my local hospice as they are prepared to see me at home and also feel they are more able to deal with my situation more (I have secondaries)
Having said that when I thought that I might have a recurrance my BCN were very good and got me an appointment with the consultant on the same day
Forgot to add, the staff in the appointments offices at the hospitals where I was treated were very helpful too.
I had a breast care nurse all the way through and when I was on chemo rads she called every 6 weeks or so to make sure everything was OK; she dealt with anything like urgent appointments for the surgeons, but she gave me the direct number for the secretary who worked for the oncologists as she was at another hospital. I only ever used to contact her if I really needed t, buthse was always on hand when I had clinic appointments. Have to admit, I did initially find that the BC nurses at my hospital were very geared towards dealing with woman who were feeling very vulnerable and they weren't so good with dealing with ones who were emotionally stronger and I fell into the latter category. I was happy to have contact only if I needed it as there is a lot of pressure on the BC nurses here with their case load, so I thought it was better for the resources to be used on the patients who needed it most. Also, there is a brilliant Maggies Centre where I live which offers courses and great support.
I met a BCN when I saw the surgeon on first being diagnosed and had a chat with her afterwards. Have never seen or heard from her since, although I know they are very busy and I think only respond to people who are having problems and not to those who are doing okay. As debsy says I would use the secretaries to the onc and the surgeon if I needed to contact anyone - and they are both very nice and helpful.
I was introduced to the BC nurse on my diagnoses, went of and had a big chat with her and she seemed really helpful, she promised to come and see me when having my mast and didn't, she was present when I got my path report and again we went off and had another big chat,had to chase leaving messages on her a.phone for prosthesis fitting and then I always felt I was chasing her for anything I needed, once I met my Onc she wanted to check me every 3 weeks for the first 6 months and then 6 weekly for the next 6 months, I always met with her and now only have trust in her and her team, we have an agreement that if I have any niggles then I am to call her secretary immed for an urgent appt, this is the same understanding with my PS and BC.
I wouldn't even know who the BCN nurse is any longer at my hospital and never met one at all at the main county one as had to split my treatment between the 2, 25 miles apart, last time I met with BCN was when I chased my 1 year appt then had to chase my PS referral as my files were getting mislaid due to me using 2 hospitals, I am now 3 years and wouldn't consider calling her, I use the secretaries to the relevant cons.
think many others on here have had the same experiences,
When I was first diagnosed, I was given a card with three part-time breast cancer nurses names. One of them sat in on the initial consultation but was quite brusque. I didn't come across the others. I think 2 of them have subsequently left. I didn't come across a BCN throughout chemo, radiotherapy, etc. If someone said "ring the hospital" I wouldn't know who to call as I've seen so many docs and nurses and have no sense of having a key worker. Is this other people's experience, or did I just hit the hospital (Guy's and Thomas's) going through a bad patch?
Happy New Year to everyone