What I shared on Facebook on Monday 05th July 2021 as my Cancer Journal Number 9.
These cancer journals were my ongoing strategy of keeping people up to date without having to share the same information again and again. I would write, and then I would get specific friends to act as beta readers, and that was helpful. Then I would post to Facebook, send the same message by email, What’s App, SMS, etc. It saved a lot of emotional energy for me, and that was becoming vital.
⭐ Cancer Journal ⭐
Monday 05th July 2021 (9)
One week until surgery today!
Notes in italics are my reflections today, a year later.
⛔ gentle reminder – no horror stories thanks, no medical advice unless this is your lived experience or your professional wheelhouse.
It is still astounding to me how many people attempted to share horror stories – not even their own, but the friend their mother type horror stories 😡
Pragmatically/ practically: I think I am almost as prepared as I can be.
Food prep, gardener, dryer, recliner, shower chair, medication, scripts, appropriate post-surgical underwear (yep, it’s a thing), readdress on mail, all organised.
Still trying to get the cleaner to commit, and if she doesn’t commit this week, I will need an alternative arrangement, so if you have a good cleaner in the South East, hit me up.
Given that I ended up having chemo after surgery and got so incredibly sick from that, I cannot stress how important all this prep turned out to be. In discussion with various members of my wellness team, I was astonished to discover that they all thought I was the most organised patient they had ever dealt with. They were impressed and said that most people neglect the preparation for when they go home.
The move is done, although there are boxes everywhere; the kitchen, laundry, bathroom, and my bedroom are set up and that’s what I need for recovery.
So much gratitude to all who helped with the move 🌻
Mentally, psychologically, emotionally
Mentally / psychologically; I have moments of unmitigated terror, and there are tears and anxiety. Lots and lots of anxiety.
I don’t live with anxiety normally, so this is a humbling and educational insight into what those friends that do live with anxiety and panic attacks experience.
If that describes someone in your life – take the time to educate yourself about how best to support them and seriously, be fucking kind, because it is awful and debilitating, and it shakes your confidence so badly, and I know that I don’t know even half of it.
To all my Beloveds with anxiety who have been so kind to share your experiences and strategies.. thank you so much.
I personally currently have the emotional regulation of a tired two-year-old, combined with a similar executive function.
Physically, I have spent days this week post finishing the move just resting and trying to recover.
There are a lot of difficulties managing my pain and fatigue. Additionally, I seem to have strained my left wrist and my right thumb in the move, my hands, feet, and ankles are swollen by the end of each day, and pretty much just hurt from the moment I wake up until I can get to sleep- and then there is the addition of the exacerbation of fibro pain. I am so fucking exhausted on top of that, and pain wears you out anyway.
It’s hard to wind down at night, and it’s hard to get moving in the morning. I seem to need about 10 hours of sleep, minimum.
I don’t have a lot of usable hours in the day right now.
I am worried of course that things will go wrong (statistically unlikely), that they will find more cancer (possible – there’s a further investigation that they are doing as part of the surgery), and about the general loss of autonomy, and personal space, and independence.
I know I’m going to wake up with an oxygen mask, an IV, a blood pressure monitor, six drainage tubes, and a catheter, at a minimum. I’ve never had major surgery before and I’m not so much concerned about the surgery itself as the aftermath thereof.
It was only two drains. Still weird. I both hated and was grateful for the catheter.
I have spoken now with a number of the medical professionals involved in my care and treatment regarding recovery; my particular medical profile combined with the sheer scope of the surgical procedure means a longer than usual recovery.
Thanks to everyone who has offered to visit but I don’t think I will be up to it, to be frank.
Unless they keep me in over the weekend, in which case, visits would be welcome, provided I am not too unwell.
I hope to be out of hospital by Friday the 16th, but that might be optimistic.
I ended up staying in hospital until the Monday, and left with no drains in place. We also went into lock down again whilst I was in hospital, and that sucked because I couldn’t see my house mate and best friend. Also, they were taking home my sleep shirts and washing them so I had fresh ones each day, and that was important. Thankfully, another friend lived in the 5km radius of the hospital and was able to do that for me.
To do list
I am a bit stressed about the fact that things to do keep cropping up for me to attend to this week; I had hoped to keep it pretty clear, but it’s filling up rapidly.
I need to do a kmart trip to exchange the items that they sent incorrectly that I need post-surgery.
I need to go to Bunnings to get some bits and pieces: suction grab rails for the bathroom, curtain rails for my bedroom, and the toilet, and various bits and pieces like that.
I have a day of food prep to do, but the freezer is already filling up 🍽
This was a lifesaver in so many ways – as was all the / Menu Log/Uber eats/ Door Dash vouchers.
I have to prep for an interview for a new internal role – that will probably happen in the first week home from hospital – awesome timing, eh?
I know, you will be stunned that I didn’t get the role. Given that I then had chemo and ended off being off work for a year, it was really something that worked out ok in the end.
I have appointments with my two GPs and my psych.. but at least that is telehealth.
I have to sort out a super glitch that has seen my income insurance neglected somehow… still can’t figure that out and that was/is a major blow. A friend has offered to help me sort that out because my executive function just isn’t up to it.
I need to spend some time on the phone to my health fund to make sure I have my head wrapped around everything that end.
There’s donor consent forms to be filled out – that’s another conversation to have, people.
Are you an organ donor? Do your family know? There’s a significant proportion of organ donors whose medical attorneys or next of kin do not know and consequently do not agree to organ donation. This time, this is about my blood and tissue being used for cancer research.
Medical Power of Attorney
And again, medical power of attorney; do you have one? Enduring attorney – do you have one? Will (something I currently don’t have, I confess). Get your documents in order.
I do have some social arranged for Friday, and I hope to do nothing Saturday and Sunday except enjoy being at home.
I honestly don’t know what my emotional landscape is going to be over the next month, so I will simply say this:
📥 I love the support and the messages, but I may not have capacity to respond.
📤 As a side note, if I am inspired to respond whilst not fully compos mentis, I apologise in advance!
⛔ I anticipate being very emotionally unavailable, so if I am insensitive or fail to engage, apologies in advance, but right now, my focus is on me, my self-care, and the care of my household (house mate and the cats).
🚫 As I recover, I would welcome visitors most likely, but again, please stay away if you or anyone close to you are sick or have been unwell in the last 14 – 21 days.
📍 I have pinned the post with the announcement about my diagnosis and the boundaries I want to work with, so if this post is the first you have seen, please refer to that pinned post.
⭐ This is the ninth of my Cancer Journal entries, if you are interested in the others, I have put links at the bottom of this post.
🌹 Be kind, Gentle Creatures, tend your gardens, take time to eat the roses, and walk your boundaries.
❗ Check your breasts, check your testicles.
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
- 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)
- 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.
- Deciding strategies
- The Camus Question of Choice
- The Follow-up Tests
- The phone call.
- Check your breasts