Hi everyone,
I was just wandering if anyone has had problems with treatment? I should have had chemo in September but apparently got lost in the system,so after alot of stress and tears,I got a phone call last Wednesday to say I was booked in for my first fec t today turned up as planned got as far as the chair to then be told that pharmacy wasn’t aware so it hadn’t been made up and my treatment had to be cancelled until Wednesday . Having the cancer diagnosis is bad enough but I’ve had to fight for everything even had to chase my own surgery up,I just cant take anymore stress and cancellations, I’ve spoke to cancer management who was just full of excuses that there was staff shortages and somebody hadn’t been doing there job properly,but he understood! I said “really have you got cancer and been treated like this” no of course he hasn’t! hes got absolutely no idea what we go through! I know unfortunately I’m not the only one it appears its the norm at my hospital as others had theres cancelled too today and its been ongoing for weeks after talking to other patients there I’m not at all hopeful for the future,I’m just seriously annoyed they can treat people like this and seemingly get away with it.sorry for the rant! And I hope everyone’s treatment is going well and as planned! Unlike mine. Xx
Oh Livvy, you are absolutely right nobody should have to be pushing their own treatment and keeping a track on things like you are …at a time when it’s the last thing you feel like doing. It’s hard enough without the catalogue of issues you’ve had. It’s such a lottery across the UK it seems, getting the brilliant departments or the ‘just ok’ ones. So, you spoke with this cancer manager person, did they reassure you in any way that there will be changes from now on, can they forsee an improvement? If not then maybe time to involve PALS from your hospital which may getting the senior managers attention? I don’t know where you are located, but is there any chance of changing hospitals if you are between different ones. Saying that if your fect is on Wednesday, and it goes ahead this time, then it would only delay things for you.
I do feel for you though. I was ‘forgotten’ for my post rads meeting, nobody ever made an appointment and over 14 weeks later, after being patient I gave up, rang the BCN and now have my follow up for November! That was only a VERY minor thing compare to you, but it does cause upset and you don’t know if you’ve been missed and keep waiting daily for contact. So, therefore, I can imagine how totally fed up you are !!!
Maybe if you are seriously annoyed, on behalf of yourself and others, then it is time to kick up some more fuss?
Thanks charys,
I’m just utterly fed up with the whole scenario its been a nightmare from the start,I’ve seen 3 different surgeons everyone of them have told me different things I haven’t been able to build up a rappor with any of them, infact I feel like a nuisance by asking any questions and rushed out of the appointment as quickly as possible! The so called manager didn’t have any thing reassuring to say just full of excuses and seemed to think that because he had a sheet with all my appointments for my future treatment on that he was doing me a favour! Because he had sorted it! Even though my chemo nurse had already told me that I had appointments on the computer from beginning of September that no one knew about apart from the computer!? I’m in Cumbria by the way to get treatment elsewhere it would mean Newcastle which is miles away,as you say I cant let this go I need to kick up a stink they cant be allowed to get away with this there playing roulette with peoples lives! And you, me, nobody should have to remind them and chase them up for appointments,treatments etc! my oncologist is new met him twice now but lovely,he’s so disgusted about mine and other peoples treatment he wants to leave he’s already had enough! Anyhow another rant over! I think I need a stiff drink! I will keep you updated. Xx
oh livvy im so sorry to hear how badly you have been treated. I cant imagine how awful that is. I hope that you are soon back on track. Most of my treatment went to plan although my herceptin injections were delayed by about 6 weeks because of an oversight. I was frantic at the time as I had been given a time schedule and presumed any deviation would result in the cancer coming back/not being got rid of. Have you contacted Mcmillan they were brilliant when I had problems and intervened for me.
Hi Sheba56,and sueH-S,
Thanks for your kind replies at least I know someone understands how difficult it is,I’ve been referred to MacMillan I’m not sure I can do much more fighting on my own I cant stand the stress! Went for my first chemo yesterday they were only 3 nurses so were very short staffed for the amount of people that were there, 5 which I could see and more in the waiting room. after a delay of a couple of hours had my pre-meds and my saline put through my picc all going well so far… No chance! The nurses soon discovered I hadn’t had a heart scan so it got stopped,after several phone calls they managed to fit me in for an emergency one thankfully! Otherwise my chemo would of been cancelled yet again until Friday,which if that had happened I wouldn’t of been responsible for my actions ,ever feel like your jinxed! The chemo nurses are worth there weight in gold how they keep there spirits up as well as the patients is beyond me,alot of there precious time is spent on the phone trying to rectify other peoples mistakes! There job is to treat us not chase up scans,results,pharmacy,etc I have considered several times I cant do the treatment anymore with all the added stress if my children weren’t so young I doubt I would be. But I will not give up I will come back fighting for me! For you! For anyone that has to go through this! And of course the wonderful nurses that don’t get enough pay and appreciation for the b****y hard job they do! I just hope I’m a minority and no one else has to go through this! I hope you are both well now and on the right road to recovery,I’ve seen your pics sue and you look stunning! Gives me a bit of hope that you can still look good going through cancer treatment.well after all that ranting back to my chemo,felt a bit sick but other then that fine! Even though I’ve been peeing like a racehorse! With all the water I drank? start my g-sf injections tomorrow what ever there called lol a bit apprehensive about doing it myself but needs must I suppose! Take care everyone I will be back!? XX
Hi sue H-S,
Thanks for the info I’m not expecting it to be all plain sailing Il take the rough with the smooth aslong as its not all rough lol! I’m going to try myself with the injections believe it or not we have a short supply of district nurses as well! So rather then trying to chase up getting that done when I don’t feel upto going to the g.p surgery I’m sure Il manage haha.i hope your radiotherapy is going well I bet your worn out! I’ve to have that too after chemo,take care and I’m sure Il pop over to the october thread at some point,if not for more wonderful advice or another moan lol. XX