Back to the beginning – part 4

Today I continue on with Back to the beginning – part 4, you can find the others in the series here: part 1, part 2 and part 3.

After our overseas family holiday, Nick’s health started to deteriorate. We noticed his weight decreasing everyday, no matter how much he ate, and it was really starting to get him down. He had to weigh himself everyday and there were times he refused to look at the numbers that flashed up, because he knew they’d be less than the day before. It always got him down, knowing he was once someone who proudly told everyone, he had 18 inch biceps, to someone who was now becoming skin and bones.

We learnt that pancreatic cancer causes more weight loss than most other types of cancer, due to the fact, your pancreas helps your digestive system digest your food by releasing enzymes into your intestines.  When it’s not working like it should, then your food can’t be digested as easily, so therefore, you’re not getting the good stuff your body needs. It’s all really technical, but the long and short of it is, you need a fully functioning pancreas to survive, its something most people take for granted.

He did try and eat as much as his stomach would allow, even taking to drinking hospital strength Sustagen, to help maintain his weight and drinking the vegetable and fruit blended drinks his mum would make him, but it didn’t have the effect he’d hope for, the weight just kept on dropping.

Back to the beginning - part 4
Nick & I in December 2010, looking frail, but look at those cheekbones!

Some people would ask me, when he wasn’t around, ‘what’s happened, he’s starting to look so sick?’ but there was nothing new, he’d just got away with looking mostly good up til then, so people were surprised when they hadn’t seen him in a couple of weeks, because the change was so obvious.

It was also around this time, as a really cruel side effect of his cancer, he developed ascites. It’s a fluid build up in the abdomen area, that would swell up his stomach, making it hard and uncomfortable. He would wake up looking 6 months pregnant! We were told, once you have ascites, it also means the end is near, as the body has stopped functioning like it should.

Back to the beginning - part 4
Nick with his ascites kicking in

The ascites needed to be drained daily, it meant more time at the hospital and more procedures. They would literally cut into his side, slide in a tube and we’d watch as the fluid drained from his stomach into the clear bag below. We were luckily enough to have a wonderful nurse, who was gentle and made the 45 minute drain time actually ok. Nick would say it didn’t hurt, and he actually looked forward to being drained, because he’d feel so good after it.

At first, it was manageable at hospital, but as with everything, it soon escalated and Nick was needing to be drained twice a day. There was no way he was going to be admitted to hospital as a patient, which is what his Doctor suggested, so the next best solution was that I would become ‘head nurse’ at home and do the drainage myself, I was already looking after so much else of his routine, it just made sense.

He underwent a procedure to have a tube permanently inserted into his stomach and away we went, doing it at home, like we’d been doing it forever!

Back to the beginning - part 4
At home being drained

We were draining approx 500- 800mls each time, his stomach was like a balloon being inflated and deflated twice a day. I’d set him up on the couch, so he was comfortable and could watch TV. We timed everything around his draining, including visitors and our daughters bedtime! Again, this just became another normal part of our day, I won’t lie and say we never got a faulty bag that oozed gross fluid all over my carpets, but it was just part of what I had to do, I never thought anything of it.

Being that Nick was so organised, he started a spreadsheet (yes, he loved excel, everyone remember that?) that we would list the amount of fluid drained, plus his temperature, blood pressure and weight.

I’ve attached a photo below:

Back to the beginning - part 4
Nick being organised!

At this time, because of the new complications, Nick’s oncologist wanted him admitted to hospital, but he was standing his ground. The answer came in the way of Nick becoming apart of their Hospital in the Home program. In effect, you are treated as a hospital patient, in the comfort of your own home, with Doctors on call 24/7. Perfect for us, and our new location so close to the hospital.

So, every morning we’d have a visit from a nurse, who check in on Nick, take blood samples, she’d note down the amount of fluid i’d drained that morning, check his site and discuss any issues Nick had and then every second day, we’d get a home visit from a Doctor. It was a great set up, which again, allowed us more time at home. Plus, the nurses were always the same few on rotation. We became very friendly with the girls, who were more used to visiting elderly patients, than young couples their own age.

On a side note, being apart of this program, also meant you had to stay at home, anytime you weren’t physically at the hospital, because you were still considered an inpatient and they were liable for you. We’d ask the nurses and our Doctor to come first thing in the morning, so we could do what we wanted for the rest of the day. Many times, our Doctor would end his visit by saying, ‘Michela, Nick’s not to leave this apartment today, remember that’ and i’d reply, ‘Of course not!’, we’d wait 20 minutes after they’d left and then we’d head out the door! Oh well, there was no harm in getting some fresh air!

Even though it seemed like things were only getting worse, we still managed to keep things fun. I’d joke about being the nurse who couldn’t stand the sight of blood (very true!) and Nick would always joke about looking more pregnant with his ascites, than I ever did with our daughter. We were getting through this together and our relationship had never been stronger. I used to ask Nick not to die on me, that’s one thing he had no control over, no excel spreadsheet could help him out of that!

Before I sign off for this week, just wanted to give a special thank you to everyone for reading along and to those who have subscribed to my blog.

I have been overwhelmed by the support and beautiful words you have written about Nick and I. I never thought so many people would be interested in our story, but you have all inspired me to keep writing!

Also, i’ve finally made the leap and you can now find The Polished Widow on Facebook, if you don’t know why this is a big deal, read this post.

Til next time, Michela x

7 thoughts on “Back to the beginning – part 4

  1. I’ve been training to be a death doula / spiritual midwife or in common language – someone who offers emotional support and companionship to those at the end of life. I am finding your blog deeply moving and very useful on many many levels. I think your incredible spirit of acceptance, and living from moment to moment enabled Nick to live so much more fully than most terminally ill people are able to achieve in their last days. It seems to me that despite the sadness of the situation, thanks to you, Nick truly lived until he died. I hope to be able to enable that in others through my own work. You are both inspirational people

    1. What a lovely comment, thank you for writing me. I’ve never heard of a death doula before, but I guess it’s what I was to Nick before he passed away. I did my best to make his last moments comfortable and full of love and memories.
      Good luck with your studies, im sure it’s a very rewarding yet emotional role for you. Thank you for reading along xx

  2. Hi Michela, I just found your blog and read the whole thing! I don’t think I can find the words to accurately describe what I feel right now but I just had to tell you that I am in awe of your strength and courage. Thank you for sharing.

    1. Happy to hear that you’re reading along, thank you so much! I never thought anyone, would really be interested, in what I had to say, so this has all been very humbling.
      I really appreciate your kind words. Thanks again.

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