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First weeks at home

I just found that I had written this blog kind of collating my experience of my first weeks at home and never posted it.

Home, post-surgery day 7

First day at home

Tuesday 20th July 2021

The last 24 hours ironically have been the toughest so far.

The point of transition between hospital and home is statistically one of those points where you can feel that you have lost ground.

My housemate is amazing but they can’t provide the same level of support as three shifts of medical professionals.

I didn’t need to be in hospital any longer, I was confident about the discharge, especially with the additional supports I had arranged.

But I had major pain breakthrough over the last 24 hours with a number of contributing factors and I am, I confess, feeling a bit sad, sore, and sorry for myself.

However, called my GP and they are all over it, so I’m confident that I am moving through this tougher bit.

Thanks to my Beloveds for being in my corner as always.

So this week, the goals are simple.

Firstly, adjusting to the additional demands of being back in the domestic environment.

Three of those demands have fur… because of the surgical wounds, and the numbness associated with them, having cats actually on me is just not an option.

Secondly, rest and sleep; I’m still on a bit of a phantom regime of obs every 30 mins; so I’m dozing and napping rather than sleeping solidly – to which end, my GP has agreed I can trial taking one of my sleepers tonight.

Thirdly; managing bowel function. I stopped what they supplied me as it was too strong by last night and that was one of the compounding aspects.
So for me, that’s yogurt, my probiotic supplement, and psyllium husks.

🚫 reminder, no medical advice thanks unless it is your personal lived experience from a similar extensive/complex surgery. I have a great wellness team and some phenomenal Beloveds for whom it is their professional wheelhouse so I am very comfortable with my plans. And I also have some Beloveds for whom it is very much their lived experience and we are in regular contact too.

Fourthly, continuing with regular meals and meds. I’m using the My Therapy app to track my meds, and that is working well – although it took a bit to set up. The meal prep and the gifted meals are working well too.

Tomorrow I have my first assisted birdie bath happening.

One thing I can tell you, I am missing the long showers I was having in hospital.

I am also missing the hospital bed with its adjustability and the air mattress.

The recliner is where I am sleeping for at least the next week, the normal bed is not yet an option.

Gentle Creatures, the recliner was where I slept for the first six weeks after surgery.

I have to concede that perhaps my housemate and my sibling are correct when they suggest that perhaps, just perhaps, I overdid it a bit yesterday afternoon and this morning. I am perhaps.. just perhaps.. not the easiest patient once I am back in my home environment…

The greatest wealth is health


Wednesday 21st July 2021

Post surgery day 8

Why yes, I am starkers, thank you for noticing 🤣

I have just had my first post-acute surgical care service; this very chatty lady came and gave me a sponge bath.

There’s quite a knack to doing it correctly when you have huge surgical wounds. I have now been coached in the process.

Finally, with the adjustment of my medication, I got a good night’s sleep last night. Got up, made toast and tea, had my 0800 meds and my 1000 meds, chatted with a friend via messenger, and then crashed again until the PCA came.

Yesterday, when I was really struggling, another friend spent some time chatting back and forth on messenger to distract me.

Feeling much better, going to reply to some other messages and then maybe have an afternoon nap. Probably have to put on the stupid post surgical underwear before the nap. Yes, there is magical underwear 😅

But there needs to be some skin time each day or I will go nuts – I have to wear this stuff 24 / 7 for the next 6 weeks.

Wednesday 28th July 2021

Super early for my Wound Clinic because I am disproportionately anxious about it.

Quiet coffee to ground and centre, then I am going to arrange a wheelchair to go up to the clinic.

I could probably walk there and back, but the impact of a sleepless night, an early morning, and the walk combined with the new experience of the wound clinic potentially will cost me too many spoons for today.

I’m somewhat unduly protective of my surgical wounds at the moment so my ride-in saw me hugging my elbow pillow between me and the seat belt, but the Uber driver was very considerate and careful.

Thursday 29th July 2021

My housemate put one of our picnic benches into the sun so I could sit outside and drink coffee whilst they cooked BBQ ribs for lunch.

Then they took me for a walk 😅

I only made it 500 metres!

But.. still.. a walk.. sunshine.. outside, lol! The Wattle is now blooming as we round the corner towards the next festival I observe; The Quickening.

Also my first wear of this jumper.. cheap and cheerful from KMart, should have got two and two of the yellow ones as well. I got an 18 and it’s oversized, soft and warm, and yeah, probably highly flammable.

The colour reminds me of my hangover shirt from uni the first time around..

My mother also wore such bright colours… I think it also makes me think of her. I have a foreign interest in both yellow and orange currently, lol!

Orange by the way, is also the MS colour – huge shout out one long time friend and one new friend – both of whom have been so supportive and helpful to me in my home prep for a safe recovery and generally through all waves hand vaguely this.

01st August 2021

Two delights today.

Audrey is not normally a lap cat and when I first came home from the hospital, she was quite distant. I suspect she didn’t like the smell of all the medication. Since I have been off the endone, she has returned to her normal self.. or perhaps even more affectionate – today, she delayed my walk because she hopped into my lap for over half an hour of smooching.

The rose is a bloom from the struggling, neglected rose bush that lived here. I gave it a boost before I went to the hospital and it has rewarded me with this lovely (unfortunately not scented) rose.

My housemate took me out for my waddle this evening (my time frame was interrupted by a 2-hour doze after dunch / linner) – ever so slightly less distance than yesterday, but my pace is better. My gait will eventually return to normal, I’m sure 🤔

Toxic Positivity

I will keep on sharing these kinds of simple alternatives to toxic positivity because it’s really important.

Toxic positivity is, in my opinion, the insidious secular & new age extension of prosperity theology and I fucking hate it with a passion and think it needs to be stamped out with extreme prejudice.

Self checks

Ensure that you are vigilant around your self-examination. Train yourself to check your breasts/testicles routinely, and monitor your bowel habits and your urine output. These are our body’s early warning signs, and we don’t have a lot of awareness of them.

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