I’ve just had an impromptu few drinks with some lovely friends, who asked me when my next Blog would be out. I admitted to them that since my last one, I’ve written two more in my notepad but haven’t published them. Why? I don’t want to be the person who is constantly whining about life and how difficult it is. I’ve been a bit sick of the sound of my own self-pity and didn’t want to inflict that on the rest of you. But they all told me that people were waiting for another and so I have promised I would put pen to paper once more.
Paul didn’t come for drinks. He is still getting used to the PEG, and the nutrition-rich formulas that I feed him are playing havoc with his stomach. Having shat himself earlier today, he didn’t trust his own arse to go down the pub. I offered him a sanitary towel, but he declined. I took Cozmo with me instead. I’m glad I went. It’s so easy to cut yourself off from people and I really enjoyed just chatting about shit for an hour. It’s so refreshing to listen to other people’s tales and just switch off from your own life for a while. And, of course, Prosecco is always welcome.
This past few weeks have been intense. I’ve aged 10 years. I look like shit. My Botox has worn off and my eye bags are spectacular! My brain is mush and I can hardly string a sentence together. But it’s Paul that has had to endure some serious shit. Deciding to have the feeding tube fitted was a big step for him, as it’s another win for the disease. He is no longer in control of that aspect of his life, and he has finally had to accept that fact. Driving to the hospital was hard. On a routine visit to the Palliative care team the week before, we had been asked to start thinking about ‘plans for the future’. The leaflet we were handed included questions such as:
· Would you like to be resuscitated in the event of a medical emergency?
· Would you like to donate your organs to research?
· Have you made a will?
· What kind of Funeral would you like to have
I was going over and over these questions in my mind and realized I didn’t know what Paul’s wishes were should the worst happen. And if I didn’t establish this information I would most definitely make the wrong decisions and he would, without doubt, haunt me forever. I was also very aware that he was nervous having never been admitted to hospital before, and so if I brought these things up I was probably going to make matters worse. But I had to know. So, I asked. He was absolutely fine about it all. I cried. What kind of shitty conversation were we being forced to have? Man, this is fucking harsh.
The operation was not straight forward. The wait was awful and being told that they had to abandon the procedure due to him being unable to breathe, was really worrying. They rescheduled for it to be done under GA, but Paul was told that there was a huge risk of him being on permanent ventilation afterwards if they couldn’t get his lungs working for themselves. I’m glad I didn’t know that until he was out of theatre and awake.
I’ve never seen him look as poorly as he did laying in the High Dependency Unit. He was weak, tired and in pain, and looked gaunt and yellow. He was attached to all kinds of machines that beeped constantly. He was exhausted and could hardly speak. I couldn’t stay for long. I was glad when it was time for the school run, so I could get out of there. I cried as I drove home, not caring who could see me. My big, strong, mouthy, pain in the arse husband was laying in a hospital bed, a shadow of his former self, and not a damn thing could be done to help him. I made myself busy at home, knowing that others would be visiting him (one of them being Nigel, who the nurses thought was his gay lover). Naturally.
But, he was soon home. The PEG is surprisingly easy to use. It looks neat and you wouldn’t know it was there. I mean, I can’t say he’s chuffed to have it, but I think he knows it’s necessary as he continues to lose weight. At his heaviest, there was 6 stone between us. There’s now 2. I’m getting fatter as he’s wasting away! Not on if you ask me. Bastard.
After 6 days without alcohol, he steadily weaned himself back on the beers. Beer is his friend. He is determined to continue his habit for as long as possible. I suppose cirrhosis of the Liver is the least of his worries. He eats when he wants to, but at least he’s got the option if he’s too tired or his hands won’t work. He has now started to use the lift, finally admitting that a fall on the stairs is now highly likely. But I cannot get him on the mobility scooter. It still sits in the corner of his ‘special’ room. The ‘special’ room is where all his stuff lives. We don’t really call it that when there’s no-one around. I might as well be honest. It’s the Spaz room. For his Spaz stuff. Cos he’s Spaztastic. Spaz.
So, life goes on. I’ve got my game face on most days. I have the occasional meltdown, but I don’t let it show because it’s hard for everyone else too. And I must keep things going. It’s amazing what you can deal with when you have no choice. And Paul doesn’t feel sorry for himself either. His consultant said he wishes he could prescribe Paul’s attitude to his other patients, because it’s so refreshing. He just has to be good at everything doesn’t he? Even dying. ‘Yeah, I’m dying, no worries, it’s shit but that’s how it is so let’s get on with it’. FFS.
That’s it. I’m off now to sort his feed. They come in different flavours. Why? It’s ‘Forest Fruits’ tonight. It smells like the worming medicine I had to drink as a kid. Gross.
PS. His Funeral request? No God and no Man U shirts. He doesn’t care about the rest.