Deceptive Cadence

Sinking in despair and tell the world my joys

****** content warning - I will talk quite explicitly and graphically about surgery, drug reactions and complications. Surgery is brutal and it’s only now that I feel able to share my experiences *******

2nd April 2023

I arrive home in the evening on the 2nd April. I thought it would easier. Now I can control things. Manage my meds etc. I head upstairs to the bedroom. Sorting out my meds leaves me wondering how the ward staff managed it all. I’m really grateful to get a call from the community nursing team who arrange to visit me later in the week for TWOC and removal of clips. I was fully expecting to need a trip to them for those things.

My gratitude post goes on Facebook. Screenshot below.

My evening cocktail of medication consists of 2 laxatives and 2 stool softeners, 2 antibiotics, 1 Longtec (oxycodone), 2 paracetamol, 2 ibuprofen. I set an alarm for the night meds which I repeat but omit the bowel meds. I’m convinced I’ve missed something and Adam is trying to help me. I’ve never taken so many pills. We’re both groggy and snappy. I get distressed and need some reassurance. I was a functioning, working adult 10 days ago, how did I become so inept?!

10 days in hospital and I’m institutionalised…… 😳😭😳😭😳

I task Facebook friends with giving me reassurance. Somebody tell me how well I’m doing - I’ve managed my meds since being home. I take Shortec (oxycodone) and drift to sleep. I sleep much better in my own bed, but still wake up in pain and distress.  The medications are in boxes in the wardrobe which I thought was near enough, but I need what I’m taking at night by the bed. Adam doesn’t cope well with disturbed sleep.

I wasn’t expecting home to be this hard.

April 3rd - I wake up and see a message from a singing acquaintance. There’s a phenomenon amongst shapenote singers where you can feel quite connected to someone you’ve never met just by virtue of having a shared love of sacred harp singing. Chris pops me a message saying that they led Judkins for me in Portland, Oregon and they hope I feel better soon. I reply with thanks and expressing how hard home is.

At 8am I’m ringing the doctors to arrange an appointment because I need more painkillers. The hospital only gave me 3 days supply of oxycodone. GP calls me later that morning and prescribes me a bunch of stuff. It’s expensive with the various charges. I’m not used to dealing with these things. Later that week I sort a pre payment certificate. Annoyingly, some youths decide to throw stones at our car so I end up contacting the police when I should be napping. Additional admin I could do without quite frankly. Grrrrr! 🤬🤬🤬

The sun is beaming outside, I can see blue skies from my bed looking out the back window. There are worst places to be holed up, I think to myself.

An army of folks have signed up to bring us meals 3 times a week for the coming 6 weeks! The “take them a meal” website is amazing. Our first visitor brings a lovely pasta dish and a bonus sticky toffee pudding. Yummy! I relay hilarious tales of my experiences and put my happy face on. In some ways the inconsistencies between the different doctors and my reactions are the making of a comedy show. The kind of situations that make you laugh and cry in equal measure. So how am I not crying? The other factor in play is bass notes - if my basic needs are met - if I’m fed, watered, clean, toileted, adequate pain relief then I’m doing pretty good. If any one of those things are missed or out of whack then all hell can break loose and often will in seconds. I got the concept of bass notes in a podcast series by Rob Bell about joy. He mentions the importance of simple rhythms and habits in the practice of finding joy. In terms of recovery I assign bass notes as my basic needs being met. Of course for visitors we make sure all of the bass notes are sorted.

I make a list of my meds and timings, do some adjustments to the antibiotic regime so that I’m not having to take the last one at midnight. The GP advises me to use ibuprofen until Thursday when she wants a review of my pain management. I was hoping to use that as a step down from the heavier opiates over the next few weeks.

We have a calamity with sticky fortisip getting knocked over and staining the bedding. Adam changes it all for me - I can’t even strip the bed! So weak. I try to be kind to myself. We’ve got through the first day at home. I forget the injection….that gets done in the small hours.

Over the coming weeks I speak with various friends relaying my drama. Anyone who’s willing to listen. I’ve sent my refined toilet song to my mate Seth. He approves. I think about sharing it more widely.

Tuesday 4th April - I wake up in the small hours needing pain killers and some food. I pop a message to Chris, I had hunch he would find my song funny, so I test the waters.

Me: “Also I made up a bowel movement related ditty to the tune of Judkins… I’ve probably ruined it.”

Chris: “Care to share? No song is ever ruined by a good parody.”

I forward the voice message.

In case you can’t get all the words.

We bond over exchanging song parodies and within a few days I’ve assigned Chris as chief humour maker especially in the middle of the night when I can’t sleep. Little did either of us know how important we’d become to each other.

Around 9am I get a call from the theatre list co-ordinator. She has the date for my next surgery…….. Monday 24th April. I gasp! “I won’t be ready then.” She persuades me to accept the date and think about it. I can always reschedule. I ask if someone from the team can call me to discuss the surgery. Anyone! I mention J the reg. She obliges with assurances that someone will call me.

The police make contact, they happen to ring the door bell when Adam is walking the dog and I’m stuck upstairs. I’ve mentioned to Adam that I want a shower and hair wash. I’ll need supervision and help. He is chomping at the bit as soon as he’s up, wanting me to nail down a time. I’m mrs laid back (literally). I suggest 11am is sensible. The shower feels glorious, Adam dries my hair and I feel so good. That feeling lasted about half an hour as things quickly went south. The surgery put immense strain on my body and our relationship. We thought we could handle it based on our previous difficult life experiences. Nope. Those first few weeks are the hardest.

In the evening I get a call from the hospital, J the urology reg. I tell him about the surgery date. “Oh too soon! Too soon!” He says immediately, I detect a sort of gut instinct response from him. I agree with him and explain my plan. I also check with him about my own thoughts of aiming for around mid to late May when I would have been seeing urology. J agrees, he signposts me to information about the surgery. I end the call saying, “Well J I must love you and leave you. I’m sure you have a home and family to go to…….No! That’s not what I should say to my doctor….. oh goodness, I’m sorry!” I’m befuddled as a friend said, and completely unhinged. Facebook updated accordingly with a facepalm avatar.

The leaflet J signposts me to is helpful. I can’t see how I will be ready for the op but I’m not making any rash decisions. I try to put it to the back of my mind thinking I can’t do anything about it until nearer the time. I send the link to Adam.

https://www.baus.org.uk/_userfiles/pages/files/Patients/Leaflets/Radical%20nephrectomy%20lap.pdf

As helpful as J had been, my experiences of the hysterectomy leave me petrified and I feel like I’m wading through treacle trying to navigate the decision. I’ve no point of contact to discuss the issues. I’m speaking to the Gynae nursing team regularly to check I’m doing things right and clarify things.

I wrote the following on Facebook that day.

Day 45 (11 days post surgery).

3 things I’m grateful for:

1. My sense of humour. Today I’ve made a ditti about bowel movements to the tune of judkins in the Christian harmony. I’m happy to send it you if you would wish. Warning, you’ll always giggle when singing the actual song though.

2. 5 year old me. Tomboy 5 year old Hannah had 3 best friends. James Edginton, James Hearnshaw & Jason Jackson. I hated dresses & girly things. I wanted to be a boy & desperately wanted to pee standing up. 5 year old Hannah is delighted with a tube that allows stand up wees. Though 41 year Hannah is delighted to feel like needing a wee this morning & hopes to be rid of the catheter on Thursday.

3. Strong painkillers. I’ve worked out I’m an emotional wreck until pain relief kicks in. I have what I need next to the bed. I should only wake up once in the night for pain killers. Only downside is the constipation. Hoping for movement tomorrow.

Extra one is police officers who get back to me.

After all this you’re perhaps wondering about the title. Deceptive cadence. Well, it’s about chord progression in music. Essentially a major chord transitions to minor chord in an unexpected manner. My time at home proceeds in an unexpected manner of deep despair and joy. The friendship that develops with Chris and Karen (his wife) was a curve ball none of us expected. I wouldn’t have it any other way. The kidney op is the devastating blow that rocks my world.

I’m sinking in despair and tell the world my joy. The song linked has a deceptive cadence in those words. Thanks to Chris for the demo pic. The “vi” notes is the deceptive cadence.

The song? 187 in the Denson book. Protection. Listen out for the deceptive cadence, you’ll see Deidra point to the class as they sing it. Delightful!