Thanks everyone your support, it has got me through the last few difficult ;) days when I felt I was heading for a complete meltdown.
@ Beryl, unfortunately I have no one that can come as an advocate for me, that is why I have faced every appointment alone. I picked a bad time to get BC ;) as there are four other family members facing their own battles and being cared for, two in a much worse situation than mine, I cannot burden them or their carers.
Others are working full time including hubby and since I am not working we cannot afford for him to have time off during the week. Also he is very forgetful haha I wouldn't be able to rely on him to remember things, Bless him , he has other good qualities.
@ Tee Pee, I did ring my GP yesterday (very caring and attentive) I discussed it with him and he is writing a letter on my behalf, which he will email to them and follow up with a phone call to the Oncology and Surgical units, he will emphasise the uncertaintity I have regarding the surgery and who is doing it. Also I am puzzled why they dont do a scan now to see what affect the chemo has had on the tumour?
@ Sister, I definitely did not take you reply as Bossy :) , you always give good advice.
As far as a breast care nurse I do not know as I was introduced to the Breast Care Co ordinator early after diagnosis and she gave me her card. I called not long into treatment and was told she was on leave for three weeks and no one else was offered as an alternative.
When all this surgery, neuropathy, cancelled chemo came up I called her again last week and it was a recorded message say she is not available till after June some time. I listened to the whole message and there was no "replacement person" just if an emergency go directly to hospital etc
I have also rang the nurse I have seen most often at the hospital (instead of the Oncologist) she is great and she is going to speak to them also and call me back, today.
I don't think it is intentional, my GP says seems to think it's because I'm too passive and not complaining like others do, he may be right, I do not know.
In any case I feel calmer and will see what come of this.
MY BIG QUESTION is to anyone that has finished chemo and heading into surgery :
Do you think it's appropriate to wait until surgery day to check what effect the chemo has had or should a scan be done earlier??....three to four weeks waiting for that just seem like torture to me.
