What support from the hospital do people have?

Hi

For me, if it is urgent medical matter, I call the oncology hotline. I don’t know whether you have the number or not. it depends on the treatment you have. If I have general inquiries , I message the oncology nurses via patient’s portal. My hospital has MyChart which is rather fancy. Does your hospital has an online patient portal? I found I get a much quicker response on line than calling the telephone line. You will have to request to get the patient’s portal set up. 

Hope this helps. X

Sorry to hear about your woes.   I have a phone nummber for "concerns" which if unanswered (common) goes to an answering machine and a nurse will phone me back later in the day.  Hotline to my onco if need be.  Then I have a 24x7 red alert phone number which is like an oncology 999 service.  Everyone on immunotherapy is given that.  When I was on regular treatment I had the phone number of the day centre where I got my treatment, an emergency number and a general enquiries number.  I think some of these are duplicated because I started my treatment locally, but then moved to a teaching hospital because I was on a trial. 

At the start of my trial treatment I had a bad experience with the phone-in line.  They sent me off to A&E without telling me it was A&E.  They just gave me this weird address at the hospital and I realised retrospectively it was the back door to A&E.  After that I refused to phone them for a while, so I wrote them a letter instead.  It worked!   

The setup you describe seems problematic to me.    It's not operational or a service because it's to a single nurse.  What happens when they are off?!!  I suppose you have to add on their A/L to the wait.  Hardly acceptable. 

I wonder if you are between support at the moment and once you've had your oncology appt the support will follow?  Can you get in touch with oncology now and pre-empt the support?  December is too long to wait.  

Post diagnosis is the worst time when all the uncertainty and waiting is.  You're totally entitled to a helpline.  I don't know how many people your nurse is supporting or how many calls she's getting a day, but not responding is not on.  That would be an escalation for me.  Perhaps there is an under-resourcing issue but that becomes a NHS issue and can be called out.  

Thanks for replying Mmum.

The Dec appt will be my second oncology appointment,the first was biopsy results and arranging radiotherapy. As you say,what happens if she's off . . .

I don't even have any contact details for oncology though I do know the oncologist only comes to my 'local' (2 and half hr round trip) hospital every 2 weeks. It feels even more scary to be left with pretty much nothing after such a distressing diagnosis.

Sorry to hear of your situation,thank you for reassuring me that I'm not wrong to feel it's unacceptable. It's very poor that I've now got to scrabble around to try to find some support whilst dealing with everything else . . . 

I have 3 contact numbers. My oncologist’s secretary. The breast care nurses (fortunately there’s a team of 3 supporting the metastatic cases). The oncology emergency hotline which is 24x7 and is for treatment or cancer related issues. I did feel left in the lurch when I received my incurable diagnosis, not helped by it being unexpected and delivered as an “oh and by the way your scan shows a secondary deposit on your liver” by a registrar over the phone. This 7 weeks after a scan that had been done after hospitalisation with diverticulitis during the chemo for my primary TNBC.  I tried the MacMillan centre in my hospital and was very underwhelmed by the service available. I got to attend one 2 hour session on mindfulness, which helped a bit, but that was it. No counselling available.  

I am so sorry to hear that you are not getting the support you deserve.   I was diagnosed 3 years ago with incurable mestatic breast cancer. I was given a list of hospital contact numbers for oncology. This included the breast cancer nurses.  If I have a problem or a question I leave a message and someone usually rings me back within 24 hours.       I have my oncologist ring me every 3 weeks to see how I am, so he can authorise my next treatment, which is an injection.  I have had no complaints with the support I have received from my hospital. 

Maybe you should ring the main switchboard of your hospital and ask for the oncology department and ask for some help, it sounds like you have slipped through the loop somehow, as you should always have someone who you can speak to for help and advice.  xx

Omg, what an awful way to find out. I know the staff work with people with cancer all the time but I wish they'd remember it's our first time getting the news, I'm so sorry you found out like that.

Thanks for responding. The oncologist comes from another hospital, I'm not even sure which one as there are more than 1 in the city they are from. It's interesting to hear other people's experiences , I find it very odd that I've had absolutely nothing in writing and been left without any contacts x

Thanks Stella, I have no idea if my hospital has a portal. After speaking to someone on here today I was given details of things that,apparently, my hospital has but no one has bothered to inform me. It appears the hospital /bc nurse is very bad at communicating , all quite depressing /distressing especially as I'm meant to somehow have a relationship with them for treatment going forward. I'm trying v hard to not feel resentful! x