If I was reading my life as a book, I would have scrapped it by now as being too unbelievable.
First, despite being promised a face to face appointment this time, they made it another phone appointment. I wasn't sure how I could sign the Denusomab consent form over the phone so I rang and got them to change to to a face to face. Well, not so much a face to face, as a mask to mask, but still...
I walked into the onc's office today - now, the last time I spoke to him on the phone he told me it was good news and my bone mets were stable which was a shock as it was news to me I had had bone mets since the beginning. Anyway, I walked in today and he told me it wasn't bad news, the tumours in my lungs and liver were something about being slightly increased but not enough to measure.
LUNGS? I more or less lost it with him and told him that nobody had ever mentioned lungs to me before - in fact, a previous oncologist had pointed out that there were inflammatory nodules on my lungs - probably from a previous chest infection - and they were NOT cancer and I was NOT to worry.
I told him that it is something new every single time I speak to him and at this point, I have no idea where the cancer is - I'm told something different every time I speak to anybody.
He checked again and said "oh no, you don't have it in your lungs - those tumours are benign". I asked him if he was sure because at this point I have no idea what I have or where - he checked the previous three scans and there was nothing on my lungs in those.
He said he would double check with the....now I heard him say "urology" and my husband heard him say "geology"... . team to make sure of this. Still confused about that.
So he asked how I was. Now - the last time I spoke to him, I asked if the surprise news of the bone mets were causing the random bone pains that my GP had blamed on Tamoxifen and Docetaxel. He had agreed this was the case. So he asked how I was today and I told him "...the same. Still in pain.. He asked where - shoulder and hip - how long? "Shoulder, four years - this is the reason I got sent here in the first place - two years of my GP pretending I had frozen shoulder and the hip for about a year or so. The chemo helped the shoulder pain massively, but it's still not 100% pain free"
Now, when I got the news about bone mets, and the onc told me I had them but he didn't know where, I requested and received my CT scans, GP letters and reports.
So I know for a fact that the two places where I am in pain are two places where there are metastases. Guess what his next words were? Not anything to do with metastases - oh no. He asked if I had ever been diagnosed with arthritis!
I just...well. I had no words.
Anyway - the upshot was that the bone and liver mets have increased very marginally - not even enough to measure. He wants me to stay on the Tamoxifen because he feels it's still doing its job AND I finally got the permission slip for Denusomab signed which was the reason I wanted a face to face in the first place.
I don't half have a headache after rehashing that lot on the way home! I just can't wait to see what the urologists and geologists say when he trots up asking them to look at my lungs!
I had a minor meltdown on the phone to my GP about the bone mets saga and something she said stuck in my mind. "At least you have all the news now, There are no more surprises". I can't wait to tell her about the lung cancer nonsense - that was a surprise, believe me!
