I'm still waiting and it's so hard. Bone scan showed two 'hotspots' on my sternum and thoracic spine, both of which could be mets but could also not be, so CT scan ordered. I don't have the results from the biopsy on the second part of my breast, the consultant does but I can't be told until after she has the results of the CT scan and has discussed that at the MDT so maybe in a fortnight I'll know. We're way past all the waiting time standards and nothing has actually been done to treat this yet. It's been almost three months, it's grade 3, and I'm so worried it's growing and seeding and spreading.
I'm a mess, I can't concentrate, I'm making stupid mistakes like not locking the door behind me, or locking myself out, making wrong turns (have stopped driving apart from locally as I don't trust myself), forgetting things, I accidentally defrosted the freezer last weekend by unplugging it! I know I should be eating well, being active, sleeping, but I have no appetite, back pain makes even walking painful, and sleep?! I'm at least well hydrated I guess, and trying as best I can with the rest. I feel exhausted 24/7.
The friends who know keep asking for updates and there aren't any! And seem disbelieving when I say there won't be any til December other than "had a CT scan today". Guess they feel as powerless and frustrated as I do.
This sounds like such a difficult time for you. Have you thought about giving the lovely team here at Macmillan a call? They're always happy to chat things through and might be able to give you some extra ideas for support while you're stuck in this waiting process. The number is 0800 808 0000. Best wishes
