Background: It's the wee small hours and I've just helped my dear wife to the loo and back.. She now sleeps soundly but no longer at my side, rather in a hospital bed that arrived last week. Loosing my life long love is more imminent than ever as I sleep in her riser recliner at the foot of the bed.
In 2021 we were on holiday and she turned yellow overnight. The dreaded Pancreatic Cancer was diagnosed. Soon after she had a Whipples procedure and then Folfirinox,.For eight months she endured it and we hoped all was gone. Life returned for a year or so. Then in December we received the devastating news it was back. In multiple sites around the blood vessels that feed and return from the bowel plus the lungs. The specialists were kind but clear... there is no cure.
She made the brave decision to live life to the full and not to undergo more chemo... and that is what we've done. About four weeks ago things took a turn for the worse. From. walking a few miles, she now struggles to make it to the loo so a commode now stands ready for when we need it.
With Macmillan's help, all our aids arrived quickly...but the NHS supplies driver summed it up. He said it's quick because we are now treated as a "virtual ward"!
A Ward in our living room? Our adult boys now use our bedroom as a lounge! They are a great help... shop, cooking and, sitting with mum while I make a call... but they can't bedbath her, toilet her, administer the oramorph.
Before, we could get out together. Now Sue sleeps 70 to 80% of the time. Even considering using the brand new wheelchair isn't an option. She's far too poorly to subject her to curbs, bumps and the cold!.Yes, I did say cold... even in the recent. Heat wave Sue needed a blanket over her legs.
So hard to see my lover, the mother of my children, my soul mate and wife of 42 years, slowly... or not so slowly... get weaker and drift away. Each moment is precious but I find myself hoping she will not linger for wanting to be with me.
MST Continus went from 5mg every 12 hours to 10mg and now 15mg. That seems to be keeping the pain at bay. Antidepressants have helped her mood but no longer stimulate her appetite. Oramorph stands available for pain that breaks through....but not much use when that pain comes with bowel movements...unpredictable... pain that can be 10/10. It helps afterwards but poor Sue endures the loo. At the same time she doesn't want to be over medicated and not present.
I'm here for her but I recognise I'm watching her slip away... my lover and soul mate. Then, in my sadness, I feel guilty for considering my self, given all she must be feeling.
My knees ache with the kneeling...and probably lack of exercise. Sue has Lorazapam if anxiety keeps her from sleep in the small hours but I'm reluctant to even have a beer or a scotch because I never know when I'll be needed...and then I need to be present.
I know I'm not alone... but caring can be a lonely place and.... I want my lover back!
Somehow, it helps to get it out. Thank you for reading.
Paul
