KiwiCat's updates

Short post. After long hours at Thames I’m being released… to go to Waikato.

It’s going to be a long night.

I had hoped today might be the very first normal, boring, no-drama day since my surgery.

That’s not to be.

I went out for a brief shopping trip with mum to pick up some new dresses, a 30 minute outing, and was exhausted by the end so came home to nap. But before I could fall asleep I got a call from Auckland Hospital about yesterday’s blood test results: they want me at the nearest hospital emergency department asap for more tests because there seems to be a new infection.

So now I’m off to Thames for the second time this week. No idea whether I’ll be coming home today, or admitted, or sent on to Waikato, or who knows what else.

Wish me luck.

Yesterday I had two appointments. The second was for my massage, which was fantastic and I’m physically so much better for it. I’m going back on Monday.

The first, though, was the post-operative meeting with the surgeon, and the news is not good.

The tissue removed has all been tested and has been confirmed as an aggressive form of uterine sarcoma. It’s a relatively rare condition to begin with, made more rare by the particular genetic make up involved.

The good news is it is not hereditary, my sisters and kids need not fear developing the same, this is purely a matter of bad luck. The bad news is that it’s fairly certain it is already spreading elsewhere in my body, and further surgery really isn’t likely to help. Moreover, the usual chemotherapy for uterine cancers tends not to be effective for this particular type of cancer.

This is not the end of the road. I am being referred from the current specialist consultant group to an even more specialised consultant group who focus on sarcomas and who have the most up to date treatment options.

From what I’ve been told, unless they have something they particularly want me to do immediately, it may well be a couple of weeks before I get any update from them, and treatment may well begin in the new year. The silence doesn’t mean I’m being ignored, they just don’t need me right now while they look closer at the results and the options.

In the meantime, it turns out that the pain in my right side that I’ve been assuming was muscle strain turns out to potentially be a bubble of fluid caught in my kidney – apparently a not uncommon side effect of the surgery I had. I need an ultrasound to confirm, and then that can be resolved. I’m currently booked for that next Thursday.

In the meantime I’m back to the district nurse this morning to have the surgical wound checked but otherwise a quiet day.

Yesterday morning I had the last of the surgical staples removed. By mid-afternoon the wound had started to gape so back to the doctor and now I have to have it checked and the dressing changed daily.

The wound itself isn’t giving me a lot of pain but I’m getting terrible muscle spasms in my back and side that literally steal my breath and ability to think.

I do have a massage booked tomorrow so hopefully that will help.

I spent last night at my parents and I had the benefit of mum’s long experience working nights in rest homes. She was up every couple of hours helping me to shift position and move about,  and I had the best periods of sleep that I’ve had since the surgery.  Thanks mum. I’ll stay here again tonight and we’ll see what happens next.

The scan results are finally through and it’s good news: no clots.

The pain that started all this was a minor infection which is already responding to treatment.

So, back home again, hopefully before dark.

Quite the week I’m having.

Yesterday I was home. Today I’m in the Thames Hospital emergency department to check on a possible clot in my lung.

Nothing happens fast here. I’ve been here since 3am, only just had an xray, probably still need a CT.

Waited 15 minutes from the call bell to be answered.

Wish me luck

It felt as though it would never happen, but finally at around 2:30pm yesterday I was released and on my way home.

It feels so good to be home… but the long bumpy, windy drive led to a bad and painful night, so then I’ve spent much of today playing catch up.

Tomorrow I’m off to get the rest of the staples removed, something I’m very much not looking forward to since the wound has been tender after the removal of every second one.

I’m told it all looks good and is healing well. That’s great, I just wish it was also less painful.

But in the end, the worst pain is coming from the knotted muscle in my back from days of sitting in that horrible hospital chair. At least I don’t need to do that anymore.

And now the blog is fighting me – sorry for the duplicate photo, it won’t let me delete.

Have made it home long steady drive, muli stops along the way

Resting at moment

Finally, finally we’ve run out of weird symptoms and worries and the doctor has said I can be discharged and go home.

Honestly doesn’t quite feel really yet.

Of course, my transport is three hours away so I’m not going anywhere in a hurry, and then I’m under physio’s orders to stretch my legs at least once an hour on the way home so it’ll be an even slower trip, but we’ll get there.

I’ll sleep in my own bed tonight without constant interruptions. Bliss.

Well maybe, but I could be very happy with a boring tale.

It seems like every day there’s something new. Yesterday it was blood results suggesting an infection they can’t find, today my heart rate is inexplicably elevated. Which could be a result of the mystery infection but seems to have started after the antibiotic treatment and is trending up, not down.

So no release today, we need 24 hours to see if the source comes clear or if not then at least for the symptoms to disappear.

I feel like I’m on one of those exponential graphs where you get ever closer but never quite get to the end.

In other news, I’m to have some of the staples removed today. I haven’t counted them but there are considerably more than I had expected,  somewhere north of 50 I’d guess. They are going to remove alternate ones and see how it goes. They seem pleased with the healing there, at least.