Post 235: How much pain is too much pain.
We enjoyed a mince pie meeting with my surrogate mother’s new boyfriend — the 81-year-old who didn’t look a day over 70. He told us, in passing, that his family have old-growing bones: a 104-year-old auntie and lots of 90-year-old cousins.
Quite incredible.
It’s sometimes too much for me to take, given my prognosis, but he wasn’t to know.
I was truly amazed — his pegs are better than mine, and one reason is a brand new knee he recently had replaced.
Wow. Just wow.
His strength and approach to life have made him a perfect partner for my 75-year-old Mum. He also has a cheery disposition and seems independently wealthy. We are genuinely happy for both of them.
They came and went in what I can only describe as a very fast 3.5 hours. It was fabulous to see them.
After they left the house and we’d waved them off down the road, I had a bit of a worrying episode.
My Darling suggested a late lunch: grilled cheese on toast with a garlic and tomato sauce bed. I was already settled in the lounge with my legs on the leg-stool and Mr Vicious on my lap.
When the delicious lunch was ready and smelling fantastic, I tried to put my feet back on the floor, dislodging the comfortable cat. That’s when my groin acted up — as if I’d torn something in the muscles or ligaments you only use when opening your legs like pulling your knees apart from each other.
I enjoyed the plate full of loveliness, but now I had a pulsing groin pain that was properly painful. An 8/10. It felt like my body had flipped: instead of the lumbar region causing the trouble around the back, it was the groin and tummy area towards the front — the complete opposite of yesterday but still between the hips. It made any movement painful and awkward: getting up, standing, walking… all of it like yesterday, but with a more defined throbbing that seemed to fire vertically out of the groin up towards the ribs. Horrible.
After enduring the groin pain till we had seen the end of the police (Garda) series it was time for some more oramorph, so much for weening myself of it today, not a chance.
I’d had enough of being sociable. I gathered myself and got ready to go to bed early before another tv series started and caught my eye.
I struggled onto the chairlift and when I got to the top, struggled off again. I was getting angrier with myself — and with my body, that’s quickly falling apart.
After a few minutes, I became more than a little puzzled about how I was going to get into bed — including taking off my socks, blue compression stockings and denim jeans — I became so frustrated that I grabbed the phone to get help. Everything was painful and I was getting so angry with all the pain.
I tried to call my Darling on the phone who was still downstairs watching tv, and instead managed to call her sister in Ireland instead.
I instantly realised what I’d done and tried to cancel the call. That’s when I had a total meltdown. I couldn’t stop it. The phone was beeping away. I tried in vain to stop it and became properly uppity that I couldn’t manage something so simple.
That’s when I started shouting at the top of my voice for my Darling to help — but the TV was on downstairs and she couldn’t hear a thing.
I stepped it up to a maximum, Town-Crier volume and finally got the phone to stop beeping — by which time my bellowing had hit their mark, and she came up to rescue me at last.
I was in bits, overcome by the spiral of frustration I’d found myself in. I was as useless as a baby.
My Darling hugged my useless legs and useless arms, and between us we got me comfortable in bed, without stockings, socks or jeans.
What a nightmare, being so useless.
I’m not ready for all this drama.
She dried my eyes and told me she’d sort out the missed call etc. Then she turned the light off so I could get some rest — just like a baby’s daytime sleepy time — then closed the door and disappeared from view.
Crunching down on all the squeaky stair treads my Darling headed off down to the lounge and some catchup tv.
Is this what I’ve come to be?
I was asleep for a good couple of hours when my Darling came back upstairs to get her PJs on. She was tired too.
I’m feeling like the throbbing pain really needs reporting to the hospice, and if it’s bad first thing in the morning, I’ll have to ring earlier than I would have normally.
The hospice won’t believe it. I’m becoming a right old nightmare to them — as I am to the staff at A&E.
If this is the way my life is going to be, then I’m very disappointed.
I hoped my three months off would be A&E-free, with strength and stamina slowly improving not a worsening
At this rate I’ll be “maxed out” of gabapentin very soon, and as for the morphine — I just don’t know what to think?
The other problem is that with this groin weakness and pain, it’s going to be an awful drive along the 5 or 6 miles to the MoT at 12:30. I’m right out of luck in every way just now. And it makes me feel that any short break I think I have might be ruined by a “new pain of the day” every day.
I wanted these three months off to be a time for me to play, eat well, and see some sights with my Darling.
I don’t want to be arranging more tests and scans. That’s not what I want or deserve.
This life is hell on occasions and there’s nothing I can do about it.
It’s a despicable state of affairs.
I’m not happy with anything right now. I want more info from the oncologist: how large or small are the current lesions and whether they’re getting bigger or smaller. I asked via e-mail via the oncology-secs department (not my team that doesn’t exist just now, and received — the latest MRI reports, but there isn’t a single dimension anywhere, nor any sentences a modern man could understand.
So I’m wondering if I can have a blow-by-blow chat at a clinic meeting ASAP, to let me write down what my insides look like (in the King’s English). I want to know if there’s a lesion at the bottom of my spine — where all the pain is coming from lately. Then perhaps we could arrange some radiation therapy for a particular area and dull down the worst pain first.
I want to know my short time life isn’t going to be all pain followed by even more pain.
I wasn’t aware that that was a possible future plan.
If it’s going to be pain, pain, pain for the duration, then I don’t think I can put up with that. Maybe going to Switzerland is a greater possibility than I thought?
I want my scan questions answered.
That’s the start of rebuilding my positivity and confidence in my team.
Honesty to build up positivity.
Good night, sleep well.
