Please call me Mandy, I received the devastating news that I had secondary breast cancer on 3rd November, I am now in the stage of limbo, I have had an MRI but have been told that there are delays with the bone scans and also they are waiting for my medical files from the hospital I had surgery at, back in 2008, until I can see the oncologist.
I feel so many thing but mostly like I am stuck in mud, cannot move forwards as I have no milestones or goals that I can push myself towards.
I been reading a few of the different threads and they have helped to calm some of my thoughts down, they also scare me a bit as all the different names of the chemotherapies etc I am not yet familiar with so I still at the point that everything that is said all sounds like the same word “CANCER” everything else just seems like extra words not needed.
Can anyone tell me how long from diagnosis to first treatment the gap was? I know it has only been three weeks but it feels like I have been waiting months for the next step and everything else in my life has almost come to a halt. My specialist nurse has had the chat with me and told me to carry on as normal as much as I can, plan things etc, but I am finding it so difficult to work out how I am supposed to be feeling about this. Feel like my fight hasn’t started yet, I know my enemy is there (in my body) but I do not know where it is creeping to and I am currently doing nothing about it!!!
Feeling helpless and frustrated and scared, scared of every little twinge that I feel…
Any advice of how to calm myself down would be gratefully accepted.
so pleased you have come to the forum, we have all been there and now we are there for you firstly, I would say try to take one day at a time even one hour at a time at the moment you’ve had an awful shock and you need to come to terms with what’s happened to you.
Unfortunately you are waiting for your records to come from another hospital which will take time and time you don’t have because you want to get on with what’s happening to you if you could be calm (easy for me to say) hopefully these records will arrive quite soon if not I would suggest that you chase them up don’t feel that you’re getting on anyone’s nerves by doing this keep chasing until you get them, hopefully once your record arrive, appointments, tests etc should start moving along then you will have a plan to work with.
I’m thinking of you wishing you well. Anxiety takes a such a toll on us, and waiting time is endless. Please keep posting let us know how your getting along.
I was in a similar position to you in August, I had a confirmed secondary diagnosis on 25th August from the respiratory medicine people, which was 7 weeks after I was referred, they the referred me to oncology……they then said they needed to wait for my history from another hospital which could take a month! I wasn’t willing to wait so I contacted my previous oncologist and surgeons secretaries and the hospital that all the biopsies were done at……and then gave all the info to the hospital oncology coordinator here, the notes were with the oncologist here within 4 days! I also wrote to PALS to raise my concerns as there is the 62 days after initial diagnosis target for treatment and I was missing that, I then found out that the target for secondary diagnosis treatment to start is 31 days! I recommend starting to phone your old hospital tomorrow and find out how to get your notes, and phone secretaries and your new hospital to make sure they are doing what is needed! Good luck!
