Bye 2019

January 2020

Bye 2019
Welcome 2020 – please be nicer to me than 2019.

2019 wasn’t my favourite year. Nope!

Very busy “medically”, very challenging logistically and mentally difficult at times. My husbands cancer treatment and battle took over,  or I might say it overshadowed all other family life. But also big news and changes in S.’s life and routine.

In May, after two long years, we got to go to the urologist and as outcome of this meeting, in July she had another cystoscopy (to read about this procedure have a look at Wikipedia). This time was with attempt to remove the debris that sits in S. bladder for over 2 years. Mr Cascio was confident he can remove it.

Before S. was admitted to hospital we did ultrasound and x-ray to establish what is it made of. If it was rock solid, it would need to be removed with laser. Luckily it showed up on ultrasound that its a soft build up of some sort of mucus.

When the day came, I was very nervous, as always when admitted to hospital. Regardless of its an emergency or planned procedure on day ward, like today.Night before we had a good chat with S. and made a plan what will happen next day. With S. anxieties it’s important she knows what is going to happen. So she knew when she wakes up she won’t be able have breakfast and then we get a taxi to hospital. Then after we check in there will be interview and observations (including checking weight and temperature and the rest of stuff they have to check), then I will cary her to theatre and stay with her until she falls asleep.

And that’s exactly as it went.

Except I didn’t mention to her that when she falls asleep she will have an intravenous line inserted in her arm. I couldn’t tell her that as she has a needle phobia. All I could do to reduce the stress was to ask the
anesthesiologist to do it when S. is asleep instead before like most of the time they do (btw can’t understand why).

When she woke up it was first thing she noticed and was very upset about it. Also she was in a lot of pain down below and wouldn’t let us catheterize her for hours after. It was so upsetting and stressful for all of us it took days to recover. But the most import outcome of that day was – we found out that the debris that has sat in S. bladder for last 2 years (and keep causing the recurring UTI’s as it is great environment for bacterias)can’t be removed. Turned out S. back wall of her bladder is like the bottom of a pond and if they try remove the debris, the back wall could get damaged. I didn’t expect that.

It was a bad news. So since then (1st if August 2019) we started daily bladder washouts with antibiotics. It works great. And most importantly S. doesn’t mind that. It’s an easy procedure. Just before she goes to sleep, after we empty her bladder, we put back in a small amount of mix (saline with Gentimicin) and she goes to sleep. What a relief not having worry about the look, colour and smell of S. urine and waiting for infection to happen.
It was hard experience and changed the picture of how things are but we got it under control……..Don’t know for how long, but for now its ok.

I’m really hoping 2020 will be easier. At least steady. Without fireworks.

I’m thankful for my life, for my wonderful kids, family and friends, for roof over our heads and a full fridge. All I can wish for in 2020 is for health and strength to carry on. To be able to support my family.
Ok, I wouldn’t mind if it’s a boring year 

😉

Happy and healthy New Year to all of you

S.mum

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