KiwiCat's updates

Mixed news today.

I was booked to have a Zoom call with the surgeon at 11:30. I had the appointment by email and text but no Zoom link. That happened last time too, with the link only coming through the day before, but I just realised I still didn’t have it this morning. I was just sitting at my computer wondering who I could email or ring to check on the missing link when my phone rang.

The surgeon hadn’t been given a specific time to contact me, just this morning, and had me listed as a phone meeting. So then I had to scramble to remember what I was going to raise with her because I thought I had another couple of hours to compose my thoughts and make sure I didn’t forget anything.

I did manage to get all my questions out. The answers… aren’t quite what I expected.

Firstly, the Sarcoma MDM apparently already looked at my case at the end of November… and have passed me back to “the” gynaecology oncology team because they apparently specialise in treating non-operable tumours and mine has been surgically removed so it’s not there for them to make decisions on. Yes there is spread, and yes I might be passed back to them later if the right conditions occur, but for right now they can’t help. They also don’t have any information about my particular genetic variant so don’t have any advice about relevant treatments.

In terms of who “the” team are that I’ve been passed back to, this is basically Waikato Hospital’s oncology team. I pointed out that no-one from there has contacted me yet, and she made a few excuses for them but I think she was a bit disappointed too. She thought, for example, they had already given me the results of last fortnight’s kidney ultrasound (which it turns out was clear) which they hadn’t. Then she said that from the notes she could see, they’ve said they’ll be in touch 3 months after the post-surgical referral, which means end of February or possibly early March.

Back to the Sarcoma MDM, what I’d been told to expect was a date for a CT scan, but since they passed me back within days of me being told that it seems Waikato are responsible for organising that… and that they will now think about it at the end of February.

So none of that has left me feeling very encouraged. What about the good side?

Well for one thing we have the referral to the private oncologist, Michelle, who we’re seeing in Auckland tomorrow, and the surgeon is going to pass on details of our discussion today to her, including the fact that the surgeon feels the CT scan should be done sooner rather than later. Michelle can then expedite the CT scan and we can also look at figuring out the pain in my right side that is persisting but is as-yet unexplained.

Also, if Michelle also has no plans to throw me into chemotherapy (and with the knowledge that Waikato won’t even start doing anything until nearly March), she could write a letter saying there’s no planned treatment for awhile and that might mean I can finally get my broken finger repaired.

So okay, disappointing that I’ve been shuttled about and put on a shelf for a few months without notification, but hey: if the worst news tomorrow is that there’s no immediate treatment plan, at least I get the use of my hand back, right? So much looking forward to that.

All of which means, I guess, that I might be getting a promise of finger mobility for Christmas. Yes, yes, small in the grand scheme of things, but it would be an awesome present to get.

Non-broken fingers crossed! 🙂