Unhelpful team

Good morning Oak2 I am so sorry to hear about the problems with your bowels.  It does seem to be very frustrating that your oncology team are not doing anything about it.  I would definitely not give up and if you need to be angry be angry it might be the only way to get someone to listen.  You have been through so much and know your body and you know that something is not right and now you need someone to listen to you.  I had to insist on the doctor doing a follow up for my back pain because they said it was all fine and no it was not.  Secondary breast cancer in nearly all of my bones now.  Do whatever you need to get them to listen.  Good luck and please let us know how you get on.  Hugs to you.

Lee 2 x

Hello oak2 it can be very frustrating but I thought I’d share my experience, when I developed a swelling in my upper abdomen and also had toilet problems, like yourself constipation, I went the gp route, she referred me to colo/rectal consultant (took about 2weeks) who then did scan with contrast and found I had incisional hernia, he then (because of constipation) referred me for colonoscopy which took about 8 weeks. Sometimes because of different health boards ( my cancer clinic is one my gp is another) they find it hard to communicate or arrange appointments etc . My advice would maybe just try and do the gp route as my thinking is my cancer clinic had thousands of patients but my gp had hundreds so your less likely to be missed or overlooked?? Just my thoughts! Also ( just my thoughts again!) is because of having or living with cancer you do get fast tracked through the doctors. It can be a worrying time when you know something isn’t quite right but myself personally I go all routes and see who comes through first lol but you have to be your own advocate sometimes! I hope things get sorted for you soon x x 

Thank you for your reply. I tried the hospital route again this morning but no progress. I'm begining to think  cns nurse is on leave. She is usually helpful. So I'm going to my GP tomorrow as this cant't go on. If that doesn't work I will go to A&E and not leave til someone does something

Thanks for your reply. It is frustrating and doesn't help my blood pressure. the whole cancer thing is overwhelming in so many ways and I trusted my team to be there for me and they're not. Anyway better get on with my day.

Hope your day goes ok . ️

What about PALS, if you are in Eng & wal? PALS in the NHS stands for Patient Advice and Liaison Service. It's a free and confidential service that provides support, information, and assistance to patients.  Lots of people on here have posted challenges or disappointing situations and PALS has helped grease the wheels.   The equivalent in Sco is the citizens advice, although I've not used it myself.

Good idea, I've recently made a complaint via PALS regarding my first Cycle of Chemo which wasn't ordered in time and resulted in cancellation.PALS were excellent asked me if I wanted a meeting with relevant teams I opted for a written response that confirmed procedures would be changed so that noone else had the same experience.I recommend this approach.

I know how you are feeling. Since I have been put on a trial i feel ive been abandoned by my clinical team in my local hospital even though i have a new trial nurse and doctor. I'd have liked a call just to see how i am. Feel all alonne with these new people. :(