Update, I've just found out that we have a new Secondary Breast Care Nurse at Southampton General. Started very recently doing 3 days a week. Looking forward to a bit more support. Needed help today as I got very confused by hospital admin changes. Sadly my CT results are still lost but at least now several people are trying to track them down.
Think you make a very good point Bon. Have said this before, the bc nurse I saw when I was given my diagnosis, so was fully aware of my situation, told me once when I rang for some advice that we stage 4 ladies were a problem and we fell in a hole as there wasn’t any provision for us, but they were trying to get extra funding, (in a tone that implied I should be grateful for this) but in the meantime I could contact them...there are 4 of them....and they would always help. She was going on holiday the following day but would call me when she got back...that was last October half term....still waiting for that call! My GP tells me what she said was a nonsense as anyone with bc should be assigned a bc nurse regardless of stage, and told me to report it to my Onc. I didn’t because quite frankly I don’t want help from someone who regards us as a problem and as has already been mentioned find my Oncologist’s secretary is far more reliable, and my Onc is happy for me to liaise that way, but then it’s rare I do need to contact her. Now thinking I will ask my Onc at my next appt because if that is regularly being said to patients something needs to be done.
I think our expectations are raised because of the experiences that many of us have had of the support from BCNs that we got during primary treatment. Whether patients with other types of cancer get similar support I don't know, probably not. I know Ff thinks we are making a fuss but it has to be seen against this background of our experiences of primary care.
love to all Bon x
I'm in Newcastle and we have a SBC lead who is also the manager at our Maggies centre. She was there for my initial disclosure / diagnosis . There is a monthly support group for us at Maggies, and this wonderful place is my safe haven and my second home.
I also attend the Marina Dalglish at Aintree hospital. The secondary BCN is amazing and runs a support group and symptom clinic weekly plus always returns calls same day. Can't tell you what a difference it has made. I feel really sorry for people who don't have this sort of support. I also attend the hospice which is in the hospital grounds. The staff there are lovely. Finally, Marina herself runs a centre for ladies with all stages of BC offering all sorts of great complementary therapies. All in all I think we get fantastic support here in Liverpool.
Hi dragoncarinne 😊
A good idea to start a new thread, I’ve often seen it mentioned within other threads about who does or doesn’t have a SBCN but that’s not so obvious for anyone to see.
I have had a SBCN for a number of years (I actually thought she was a BCN for quite a few of them but then realised she was trained as a SBCN!) She has been great and very supportive and tends to sit in when I have an oncology appointment. I used to get worried that she was in the appointment as I assumed it was going to be bad news and she was there to hold my hand 😉 I can contact her my phone or email and she will chase up things like results or getting scans booked. I’m at Basingstoke hospital.
I'm curious, can people who have access to secondary breast care nurses tell us which hospital they're attached to? And how many people don't have anyone?
I'm seen at Southampton General and have not met any there.