Recap on surgery day
I was incredibly anxious. A friend drove me in and they stayed with me for as long as they were able. It was great to have someone there pre-surgery and post-surgery. It was a good decision, even though I had said to both my friend who took me in and my house mate who then waited to see me on the ward that it wasn’t necessary. They both insisted, and it was a great comfort.
There are a few things that stood out to me, in terms of pre-surgery and immediately post-surgery.
For the Sentinal Node Biopsies, there is a radioactive fluid (usually about 1–2 ml) is injected into the breast around the cancer or under the areola before surgery. I’m not going to lie, it is excruciating. I yelled and cried. And then we had to do the other side. The technician was absolutely lovely, but it doesn’t change the fact that it was one of the most painful things I have ever experienced. There was a scan done at the same time, but I honestly don’t remember what type – it was after the injections and I was disassociating by that stage.
By the time they got me up to the anesthesiologists, I was in complete meltdown mode. I was in tears, shakey, and overwhelmed. I explained to the anesthesiologists that I was neurodiverse and that the pain from the injection had put me into overload. They promptly sent me to sleep, and I am very grateful for that.
Post-surgery
You hear stories of people coming out of anesthesia being crass or aggressive, and it was one of my concerns. I couldn’t open my eyes until I was back in the ward (they tape your eyes shut during surgery). It took me some time in recovery to come to appropriately before they could release me to the ward. Surgery had also taken 10+ hours instead of 8, so by the time I got to the ward, I had a very concerned housemate who had been fielding phone calls from an equally concerned sibling.
I now know that I am not aggressive or crass post-anesthesia, but I do want to hold hands and know names. I was so concerned about forgetting the names of my recovery nurses that they wrote their names on my pillow case 😆
When I got to the ward, it was a great relief to see my housemate. I also decided to call my sibling and the friend that had accompanied me in the morning. I’m not trying that the phone calls were particularly coherent, and I can’t remember what I said, but it was very reassuring for me to be able to connect with those three people in particular.
The first couple of days post-surgery
Honestly, I’m not sure how people count these things, but I didn’t consider surgery day (Monday 12th July 2021) as “post-surgery”. It was surgery day, and post-surgery started on Tuesday.
On the Wednesday, I did do a Cancer Journal update, so I won’t repeat all of that. It wasn’t super comprehensive, it was mainly just a brief check-in for people online and via text and email. It was mainly about reiterating my boundaries because that was important to me.
Lockdown #5
On the Thursday, which was day three post-surgery, another snap lockdown was announced for Melbourne.
This did massively impact me because it meant that friends couldn’t visit, and my housemate couldn’t even come in and take laundry and do other bits and pieces for me. I could live without visitors, but I really wanted the stability of seeing my housemate every day.
It also made discharge day much more difficult because my housemate couldn’t come in and help me pack up, couldn’t do loads to the car in terms of my bag, my flowers, the bed pole, and over the toilet chair that was supplied through the hospital. Instead, my sibling booked an uber, but they don’t call the people to help you until your transport arrived. Honesty, it was all a bit inefficient and exhausting. It would have been much easier if my housemate could have come in and collected me and all the stuff.
Thursday 15th July 2021: day three post-surgery
Friday 16th July 2021: day four post-surgery
What I shared to Facebook
Bees Knees night shirt by my friend – the staff are loving my night shirts: arms wide enough for them to take blood or push up for blood pressure cuffs, front fastening, and soft/warm.
My housemate takes one home each night and washes it for me and puts it through the (new) dryer.
The left breast drain tube has been removed! So now I only have the suction wound dressing pump that is hanging off my body. It makes a difference!
Showering is glorious but exhausting.
My 02 levels seem to have returned to normal (ish). I hope to go for a walk down the corridor today – #goals 😁
They are managing my pain well.
My appetite has returned and I am feeling much better than I have been, to be honest.
Lockdown means I can’t have visitors – but honestly, I’m probably not much in the way of scintillating company right now.
A few friends did make it in once I realized that I was better than I expected to be.
Much love to you all. Xxx
Saturday 17th July 2021: day five post-surgery
Again, what I shared to Facebook.
“Dachshund delight” by my friend 💗
Pink and orange silk sleep cap via eBay.
My twinnie leaves today – I’m very much hoping that I will get the room to myself, especially given that we are in lockdown again. I don’t know how likely that is, but cross your fingers for me!
The nurses arranged for me to speak to Nurse Unit Manager and explained that due to my previous history of assault, combined with my neurodivergence, I would not be comfortable sharing a hospital room with a man. We were able to discussed how my preference would be to remain in the hospital until they could remove the stomach drain on Monday, but if they would need to put a man in the room, I would discharge. They said they would monitor the situation, but given that all elective surgeries had been canceled due to lockdown and it was already Saturday, short of there being an influx of trauma cases, they thought it would be ok.
Huge shout out however to shared experiences and support. My roomie has been the best companion in this experience that I could have asked for.
I still have what one friend calls “Mr. Sucky” in place – that’s a wound suction dressing with a pump.
I’m more mobile again today, which is great.
Also finally “opened my bowels” – I have never been so excited to poop before in my life! I actually messaged a select few to let them know, and celebrated with my roomie 🤣
Sunday 18th July 2021: day six post-surgery
Facebook post again
Day # 6 post surgery
“The Cats Pajamas” by my friend 😻
My night shirts and flowers have provided great discussion points with the various medical staff in and out of my room and when I go out on my walks.
I have had a room to myself since yesterday and I have been getting some blocks of really deep sleep.
A local work friend did a laundry pick-up and a kindness drop-off.
Mr Sucky should come off tomorrow.
In summery
The staff were amazing; I received really good care.
Lockdown whilst in hospital can work in your favour (in my case, having a room to myself for two nights after my roomie was discharged), but also really sucked in terms of not being able to see my most important person and all the things they were doing for me that helped.
Things that helped were my comfort items like the tea that I like, having good quality toiletries to spoil myself with, the fact that I think a bunch of flowers were delivered basically almost every day.
Having a two-metre long charging cord for my phone was invaluable.
I had also downloaded a white noise app, and that helped block out all the hospital noises overnight.
Discharge was convoluted and exhausting – when you are discharging after major surgery, get all the help you can.
Also, be aware of what medication changes there are; a friend warned me of this, but I got a bit overwhelmed on the day and didn’t check. Consequently, there was a change in my pain management meds that didn’t work for me. Thankfully I was able to make an emergency telehealth appointment with my GP and get them to prescribe another week of those medications via electronic scripts, and my housemate was able to get that script filled for me.
The first week at home was very challenging; no blame anywhere, it’s just that I needed a lot of support. I was lucky to have it, and my preparation for post-surgery helped. It is easy to underestimate the impact of surgery on this scale, but it is better to be over-prepared and not need it than to be underprepared and then have to deal with that situation.
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.
Related blog posts
- Wednesday 14th July 2021 (Cancer Journal 11)
- Sunday 11th July 2021 (Cancer Journal 10)
- Monday 05th July 2022 (Cancer Journal 9)
- Monday 21st June 2021 – Surgery Date (Cancer Journal 8)
- Plaster Cast
- Thursday 03rd June 2021 – the worst meltdown
- Sunday 30th May 2021: Cancer – telling your colleagues
- Friday 28th May 2021 (Cancer Journal 7)
- Friday 28th May 2021 Plastic Surgeon
- Wednesday 26th May 2021 Cancer Clinic
- Tuesday 25th May 2021 Left Breast Diagnosis
- Friday 21st May 2021: Biopsy, Left Breast
- Tuesday 18th May (Cancer Journal 6)
- Monday 17th May 2021 Arranging the biopsy
- Saturday 15th May 2021 (Cancer Journal 5)
- Wednesday 12th May 2021 (Cancer Journal 4)
- Friday 07th May 2021 (Cancer Journal 3)
- Samhain
- Cancer surgeon
- Sunday, 02nd May 2021 (Cancer Journal 2)
- Saturday May 01st 2021 ( Cancer Journal 1)
- Facebook post
- How to tell people you have cancer.
- Diagnosis
- Deciding strategies
- The Camus Question of Choice
- The Follow-up Tests
- The phone call.
- Milestones
- Check your breasts
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