I would like to thank you all for your kind words. Reading KatieP I see you were given the option of chemo. I was not. I spoke to BCN and was told that there are different options for chemo one being tablet form. When I brought this to my onc’s attention, he said it might do more harm then good. What does that mean? Yes I had a problem with previous chemo (CMF) but I would have thought onc would tell me there are different types of chemo or that I am not a good candidate for chemo or the tumour is too big for chemo right now, but I am not getting that at all.
Trust me I know what to ask but I get no straight answers then I get letters sent to my GP saying different things from what I have been told. When I was first in hospital in April not knowing that the cancer was back. I had a CT Scan and my onc told me it was only two small tumours. He never said it was anything more than that.
Now that I have had the pluerodesis he is now saying he was not “surprised” by what was found. I was because I was never told before I had my operation that there would be more cancer found and I was not told before the operation that the fluid was caused by the cancer.
I don’t get it why is no one being straight with me even though I am straight with them and ask the right questions?
My BCN is my saving angel. I always feel better after speaking with her but it is not her job to do that it is the onc team. She helps me find out information which I should be given by my onc team but I am not. I come out of seeing my onc feeling why did I sit forever waiting to see him and then still not know what is going on. I met my onc nurse once when I was in hospital in April and I have not seen or heard from her again.
I could not believe after my surgery no one came to see me I had to beg a nurse to find someone to speak to me AFTER my surgery. I would expect someone would speak to me and tell me how the surgery went but no I had to be asking the questions and I felt if I had not beggged a nurse to find a surgeon I would not have been spoken to.
I had my operation on Wednesday morning in 28th May and when the surgeon spoke with me he said the drain could come out and I could go home the next day. I could not believe that as I was in extreme pain and he was going to send me home. I told the nurses I was not ready to go and when I decided I was ready on Saturday to go home Sunday they found I had a infection and suggested I stayed until Monday. What if I had gone home on Friday, I shudder to think
Yes in the past I have made complaints because that is the only way I have got things done, but if things were done properly I would not have to complain. Does that mean I should be treated differently from the other patients because I complain about my treatment? It feels that way.
I must say it is only Oncology and my last operation I have a big problem with, my other care I have no problem with.
I feel angry, upset, alone, frustrated and all these emotions because I feel no one is telling me straight what is going on with my body etc., and no one is listening to me about what I feel and know about my body.
I sometimes feel so low and just crying myself to sleep or just watch TV but not watch if you know what I mean.
Once again thanks for your kind words.
Marcie.