Hello everyone.
I was diagnosed on 28 Nov and I’ve been waiting for an MRI. It got cancelled today because the machine was broken. Nobody rebooked me, I was told to call again on Monday and rebook. What has surprised me was how I’ve had to do all the phoning to make appointments, chase up when I’m not heard anything etc. I had assumed the NHS moved you through the system swiftly but it seems like nobody is bothered! Is this normal? I’ve tried to feel positive and carry on but the anxiety is kicking in big time now. It’s the most stressful time yet I am having to chivvy along the no constantly.
Welcome to the forum, a place nobody wants to be but is glad it exists when they need it.
I’m sorry you are feeling lost and disillusioned with the system. I think individual experiences very much depend on exactly which location and hospital you are at, but I will say that even when I was at a hospital that was really good for cancer care I was having to keep an eye on appointments and possible errors - that seems to be a problem in general for many. There are examples of good and bad in all departments. A friend had the ‘full treatment works’ this year and was keeping a very close eye on reminding depts she was due various scans, tests and meds. Its not that the NHS don’t do cancer care well, as they do I believe, but the departments are often not joined up very effectively and administration can have glitches.I can recall ringing once for one of my later appointment that hadn’t happened - and finding out I wasn’t ‘on the list’. We are all a little at the mercy of the poor and sometimes lacking digital integration of nhs communications.
I would expect that you have your Breast Cancer Nurse allotted, and I do think this is something you can bring up with them - as you say it doesn’t feel fair, and adds to the stress of the whole experience. I don’t think its unusual though, and I suspect it is a little worse than usual due to the covid-caused backlogs and strikes and various other pressures. You may have seen the news reports recently about cancer care in the nhs and the delays ? Thats horrible for you to be part of, and you shouldn’t have to push, but there are some on here who have had massive delays in their surgery and had to keep pushing through all avenues (Like PALS for example) and so it kind of appears necessary at times. It can make you doubt your treatment, but the skill and abilities of the practitioners shouldn’t be doubted - just put it down to a slightly ropey admin stuff. I know exactly what you mean about ‘people not bothered’. This for you is the most important thing you have faced, its massive, its hitting every emotional and psychological button - but some of the people at the other end are unconnected to the psychological impact on you. I guess they are just used to this day in and day out and have lost touch with the human feelings for the patient.
Its incredibly frustrating your delay after the broken machine, and no quick rebook, but I would certainly recommend that if you ring tomorrow and get no quick rebook then let your BCN discuss with your consultant. Their intervention could make things smoother. You can always ring the helpline number above too, for some more advice. x