Hi
I was diagnosed and had my surgery May 08. I had 4x ECT then 4xDocitaxel and Herceptin. I have 3 more radio sessions to go. I got divorced, my ex mother in law died the week after I got the decree nisi through, Oct 08. My 101yr old granny had a massive stroke the week after that funeral and then she died three weeks after that, Dec 08. My boyfriend of two years walked out on New Years Eve, taking all his stuff.
Two weeks of no contact then he rang up to talk. Somehow we've managed to clear the air. It's been painful for both of us. Last week he came with me to my radiotherapy and Herceptin. That's when the watershed happened. It all came out how he wasn't able to cope with the thought of waking up to a dead me, how he hated seeing me being moved about like a slab of meat on the radio table, how he hated hearing the same old platitudes especially "I know how you must be feeling". My Herceptin 3-weekly cycle has been on a Thursday but because of New Years Day it was moved to the following Monday. Despite them making my next appointment, pharmacy is on an automatic 3 weekly call-off so my drug hadn't been made up. I'm so glad he was there because I would have blobbed and stormed out. He made it happen and I'm so grateful.
The biggest thing has been the dripfeeding of information. The impression of informed consent is lip service because they only tell you about the next stage of your treatment. I had my first MUGA prior to Herceptin because they needed to know my start level, not why. 59% - not bad I thought, then I asked why it was important. No discussion as to what my options were should it go down. My last MUGA was 52%. This time I've been told if it goes below 50% I'll be taken off Herceptin but no other options have been discussed.
I was told I might expect flaky nails. Not the extreme peripheral neuropathy in my fingers and fee that I've got. My boyfriend took one look at my fingernails and asked what was going on. I showed them to my adjuvant nurse and she just said "Oh, they'll grow back". No-one said they'd be in any danger of falling off.
I struggled with the cold cap through eight sessions and have still got a good covering of hair. Yay! Then reading the tamoxifen leaflet it cites hair loss as a side effect. How can we win?
Upshot is we're now rebuilding our relationship one brick at a time. We're now talking openly and honestly. I'm not such a cow to him and he's not such an ostrich where I'm concerned. Whatever happens he'll be there and when we're ready we'll find a new place where we can have our fresh start.
Sorry for the lengthy post/rant but sometimes it helps.
Kindest regards
Linda x
