KiwiCat's updates

In a way, it all starts with me wanting to donate blood.

I did my gap year in England in 1996 at the height of the ‘mad cow disease’ outbreak so there was a chance of me developing Creuzfeld-Jakob disease sometime in the following 40 years. There was no test for it, you just had to wait to see what happened, but in the meantime I’ve never been able to donate blood. Fair enough, I don’;’t want to be giving someone else that 40 year countdown to wait through.

But last year, through the miracles of medical developments, I was finally free to donate (a full 12 years early!) and I cheerfully did so in mid-winter. (July, for my northern hemisphere readers ^_^). It’s a mobile sevice that comes out our way about four times a year. They’re always after more donors so they were back on the phone about another opportunity in November, but I was going to have just travelled overseas, so we settled on a January appointment.

Come January I happily turned up, filled in the paperwork and presented a finger for the obligatory blood iron test… which I failed. This caught me by surprise. I went through two pregnancies with no iron issues, so they tested again. And again. Nope, definite fail. So I didn’t get to donate, but they did take a vial to have it lab tested for me.

When the results came in I apparently was fine. The letter explained various things about how the onsite testing can be oversensitive, etc, but essentially there was nothing to worry about.

In the meantime, I had hurt my back, triggering a sciatic nerve issue from a few years earlier. I went to the dr and showed them the letter about my iron levels but the focus was on organising physio for my back.

Some months later I’d finished physio. I was still getting aches at times and tended to put it down to other things, sleeping on bad angles, lifting things (we had the house half-packed for open homes), menstrual cycle and so on. The latter was being annoyingly heavy, but not odd.

In July I booked a week off as a nice calm break. I was going to spin and dye some yarn, and work on my cross stitch. Instead we had an offer on the house and went unconditional and so needed to seriously start packing everything else. So that first Saturday morning I began by packing my external office ready for it’s move. Or, I would have if I hadn’t fallen over and broken a finger at 9am.

Perhaps I’ll leave the adventures with my finger to a separate post, but the other thing I had planned for this week off was another dr visit just to check if my heavy periods were a concern or just perimenopausal symptoms. It seemed to be the latter. He did get me to do a blood test, though, and my iron was low so he prescribed some iron tablets.

That was July. August’s period made it clear my body disagreed with the diagnosis. But we were moving. Move day was 4 September and I was taking 2 weeks off for the move so I scheduled another dr visit then. He suggested several possible options, still thinking it was likely just perimenopause at this point, but also sent me for an ultrasound just to be sure.

I had that on a Friday morning. By Friday afternoon I was rung and told I was being referred to a gynaecologist and an MRI might be needed to clear up the image.

Mum had had a hysterectomy at around my age (just a little younger) so at this point I thought that’s where we were headed.

And here’s where my broken finger comes back into the cancer story. After 10 weeks it was still swollen, sore, and unbending. We had bee told that the break would heal naturally so my physio believed it was a soft tissue injury, but just in case she sent me for another X-ray. I walked across the road to make an appointment and the radiologist had a gap in her schedule so did it straight away. While she was at it, my phone was ringing, and after the X-ray I rang back the missed call and it was the gynaecologist’s office making an apointment for the 26th, just under two weeks away. I was pleased to have gotten such a quick response, accepted, and went back to work.

Tuesday morning my physio rang with the X-ray results: no sign of healing at all. It was in exactly the same condition as it had been after 2 weeks. So she was referring me to a plastic surgeon. Then a few hours later I was called by the plastic surgeon’s assistant asking if I could be at an appointment in Thames that day at 4pm. Well it was rather short notice, it takes me about 1.5 hours to drive to Thames but sure, I could make that happen.

So off I went to Thames, and was soon meeting the lovely Simon who was very put out that my finger had been misdiagnosed and very keen to get in there surgically and fix it. He then casually asked if I had anything else going on medically so I told him about the ultrasound and my gynaecologist appoinment with Tarek. He knew Tarek and then declared he would speed things up by organising the MRI, which he did with remarkable speed and on Thursday I was having that.

Friday – one week since the ultrasound and still a week before I even met Tarek – Simon rang to say the MRI results were in and they now wanted a CT so he was organising that too. That ended up happening the following Tuesday.

By this time I was beginning to have some strong suspicions that we weren’t dealing with a straightforward hysterectomy, which Tarek confirmed that Friday. After first telling us Simon had checked in that morning on progress, he explained that the imaging all pointed towards cancer, but it can’t be officially labelled that without a tissue sample to confirm it. He was referring me on to the national consulting team who would now tell us what to do next, but it was likely to need a biopsy.

The biopsy turned out to be tricky. The growth started in the muscle of my uterus but went out, not in, so it’s hard to get to. He referred me for a CT guided biopsy and I finally struck my first set of thoroughly unhelpful people in this saga to date. I won’t name the practice but for the first week they said they were working on getting me an appointment. After 2 weeks they admitted the radiologist was on leave. Nearly a week later they rang Tarek’s office to say they’d made an appointment for me, but two days later they still hadn’t rung me and I was only getting an answerphone when I tried to ring them. It was highly frustrating.

In the meantime, Tarek decided that trying going from the inside was better than nothing so he did a biopsy that way and on Friday just gone we got the official result: cancer cells detected.

It’s not exactly something to celebrate but now it’s confirmed we can get on with figuring out what’s next. It also means I no longer need that troublesome CT guided biopsy appointment.

Tomorrow, Wednesday 22 October, is when the consultants team will be discussing my case and deciding what comes next, treatment or surgery. The coming long weekend is poorly timed for this, but I assume it will mean travel again next week. So far everything’s been in Hamilton (approx 6 hours in the car as a round trip) but these next ones are apparently likely to be Auckland-based, and almost certainly central Auckland so the same distance away.

For someone who gets carsick on a good day, living out here isn’t the best idea sometimes…

Oh well. That’s the story to date, so you’re all now all caught up.