morning all, just an update, oh my god, talk about world upside down, so oncologist appointment yesterday too as we thought, lay out our treatment options. a lovely specialist nurse (not) had previously called me back, told me in no uncertain terms i would be on flot, and i cant have surgery as too high risk due to the masectomy i had last october.
we go in with this on our minds, oncologist starts talking chemo, radio then surgery, imagine his face when we tell him we was told that wasnt an option, told him who had told me this, and this nurse just happened to be in the room, who tried to back track, the 2 pre op appointments that one was cancelled, was for a laparoscopy op, first i had heard this word mentioned, apparantely leaflet missed out of "pack" they give you, so not one discussion had, that this was a very important next step, as the ct pet scan, that i had to chase for results and was told it hadnt spread any where else, apparantely wouldnt go as far as what he laparoscopy would show.
absolutely on our knees as after said nurse had left room to do some photocopying, we advised oncologist sorry we did not want her present in any further meetings discussion, very defensive and almost aggressive attitude. so we still had to sit with her in the quite room, why she left to partly photocopy the staging laparoscopy document, which is incomplete. when she went through what this procedure is looking for, and i asked will they get the results the same day, yes she said and then she just came out with "if it finds any thing, we cant cure that". then she saw our faces, our reaction, it was very much, "oh has no one discussed this with you", of course they hadnt, even the lady at the pre op had no idea what she was pre opping us for, so we have gone from hope to oh my god, now i understand/realise what it now means when you lovely honest people have had the trauma of having your cancer stage upgraded in a bad way after this laparoscopy procedure. trying to be positive but not happening, still going to try and do our weekend away which was planned way before this next chapter, as an "up yours cancer" after getting through my masectomy treatment finishing april this year. just came out of the hospital, terrified, confused, so angry, this nurse went on and on about the food line, tried to down play the time in hospital, as i know you have to stay in until you can manage to use it, never mentioned i should be going in for the laparoscopy first with possible food line second. we just cant believe it. one of the only good things is that lovely husband now realises if it wasnt serious before, this has just got possibly a thousand times worse, so at least we are back on the same level, team, thank god, couldnt do any more of this without "us".
can i just say the breast cancer forum was amazing but this forum where previously we all took eating and not losing weight drastically for granted, and the honest experiences shared, so that people like us/me can read and now in hindsight go into these meetings and ask things such as what about my laparoscopy, which i had no idea that was my next step, before treatment plan, is invaluable and comforting on dark days such as these. even the team we saw yesterday, when i asked where the PALS office was, immediately agreed we needed to go in there and talk about our experience. i was due to go in on 30th august for a procedure that no one could tell me what it was and why and i hadnt even had my results from the ct pet scan, hence the reason i cancelled. the oncologist face when we said that no one could tell us what is was for, and when we kept the 3rd september pre op assessment, they had to triple check what the hell i was being pre opped for with no luck.
so thank you all for your honest experiences, and journey updates, feels like mine hasnt started yet and we have wasted several weeks due to not having this laparoscopy procedue and what it would have brought to the next stage in this god awful journey, but on a lighter note whilst waiting for bloods at the hospital yesterday, and it was very busy in a lovely portacabin in, not the nicest areas of such an up and coming hospital, was hearing the good old british moans about the wait time, the queue and how sunny it was, did raise a slight smile.
even just typing this has made me realise there are some things still in our control, not many but some, hugs to you all, hopefully will get the call this week for this overdue procedure, then will deal with the fall out then. hugs to you all
jules
