Category Archives: Back to the Beginning

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

Back to the beginning – part 3

This is Back to the beginning – part 3 in the series, if you’ve missed the earlier posts, you can find them both here and here.

As you might have imagined, these were tough times, I had witnessed Nick becoming such a changed man, almost overnight from his diagnosis. I like to break him into two parts during this time, sick Nick and well Nick, because there was such a difference in the characters of the two. I guess you’d call it perspective, he knew he wasn’t going to be around forever, and with that, he became a softer version of himself.

He went from never saying ‘I love you’ to repeating it 100 times a day! He forgave anyone he had previous grudges with, he apologised to anyone he could remember giving a hard time too, because well Nick, could be very difficult, he was headstrong and this sometimes rubbed people the wrong way. But, sick Nick was a dream to be around, so sweet and sensitive. You could say Fatherhood helped this change along, but I’ll always believe it was because he was living on borrowed time.

We were together 24/7, we had a role reversal in our relationship, suddenly he needed me, I took over his role of being the ‘lead’, because I could see him slipping, and one of us had to be on top of everything. I got him his medication, made sure all his scripts were up to date, co-ordinated his appointments and chemo times, along with his scans etc. , talked to all his Doctors and went with him daily to the hospital, (he wouldn’t let me drive him there, that was one thing he held strong on!). We had become a tight little team, plus add a baby to the mix and breastfeeding and I was literally on the go, all the time! I would never had believed, that I could step up and be the person I was becoming, but I had no other choice.

Another reason why we were never apart, was a deal that we made with his oncologist that he would never stay overnight in hospital. Nick had a fear that if he ever stayed, he would never come out. And so, this is why we had such long hours at the hospital, trying to fit everything in. He was especially germ phobic during this time, knowing that any sign of infection would see him admitted overnight. We just became very used to the 45 minute commute in the morning, to start what he liked to call his ‘work day’.

One day, I actually let Nick go to his chemo appointment with one of his best mates, knowing there were no Doctor appointments and nothing too important to miss, I let his friend step in, so I could enjoy a rare day at home with the baby.

He came home from chemo all excited to tell me he had stumbled (yeah, right, bet he looked it up the night before!) across an AMAZING apartment in the heart of the city, that he thought would be perfect for us to live in. He had already spoken to the agent and she’d meet us the next day, to go over the details. Like most couples, we had discussed where we’d like to retire one day, (is that normal??) we had always agreed on settling in the city and living it up, with all that Melbourne had to offer. Nick had said, seeing as we couldn’t grow old together to do this, he wanted to make it our reality now. How could I not agree with him, plus the travel time to the hospital would only be 15 minutes tops, I was SOLD!

That one time I let someone else take him to the hospital, he bought an apartment on the way there! I couldn’t believe he’d even had the thought to buy a property, but real estate excited him, it was a sign of well Nick.

It was a brand new, 2 bedroom, 2 bathroom apartment and the settlement time was super quick, before I knew it we were living there. We loved it, being so close to the hospital meant we got to spend more time at our new place. Nick was so much more relaxed being there. We had awesome views of the city and of a night we would just sit and watch the city lights and action down below. If he couldn’t sleep, he’d walk the city streets alone at 3 or 4am, watching people stumble out of clubs and bars. He’d bring us back breakfast and tell me all about the crazy people he’d met. (Mostly, strippers paying their way through university and mates having brawls on the streets after a few too many!)  I think living in the city, with the constant noise and action suited him, it didn’t give him much time to be alone with his thoughts.

On the upside, we were also more in control of visitors. When we were living in the ‘burbs, we had a constant stream of people wanting to visit, but once we were in our city apartment, only the people he wanted to see got an invite, by special request only. It was his haven, away from the constant demands of a house and garden, the apartment never needed anything done, it was sick Nick’s ideal life!

Then Nick came up with this crazy idea to have a first and last family holiday with our daughter overseas. We had travelled extensively before his diagnosis and he just wanted to have one last trip. We had the discussion with our oncologist, who advised against us going, but after much pleading, he finally signed Nick off for 2 weeks from treatment. We were going away, something we both desperately needed.

Back to the beginning - part 3
Nick on holiday with his baby girl

We had previously spent a couple of nights in the small town where my Father is from in Italy and Nick always wanted to return. He thought this would be the perfect place to get some time out, so he roped my parents in with us and we took a two week holiday stopping in London for a couple of days, then the beautiful quaint town in Italy and then a few more days in Rome, before returning home. (He even had a friend and his son meet us for the last leg in Rome, Nick really appreciate this too!)

The most relaxing time was staying with my Father’s relatives, they left Nick and I alone, no pressure to do or see anybody. Nick spent much of the time sitting under an apple tree, reading the Lance Armstrong biographies. (He never did get to hear about Lance’s doping allegations and fall from grace, what would Nick have thought then??) And while he was unwell and couldn’t eat much, he never let it ruin his time away. He was so happy to be away from the grind of it all. Plus he got to spend quality time with our daughter, walking down to the piazza every morning for coffee and pastries. Nick used the Italian he knew, to befriend the locals, pretending this all never happened, that cancer was still a word he knew nothing about. That holiday was the best thing we ever did!

Back to the beginning - part 3
Nick enjoying a coffee at the piazza

I’m a firm believer that sick Nick had such a positive outlook on life, because he  was fulfilling whatever he wanted. Sure, when we returned from our holiday, his scan showed that his cancer had grown another 2cms, (because of the pause in chemo) but Nick didn’t care, he’d been able to live a couple of weeks, like he was almost normal again and for that, it was worth it!

Back to the beginning - part 3
Nick waiting while I shopped

That’s all for now, please stayed tuned this Sunday 16th March for an extra special post, if you knew Nick you might have an idea what this is, but I won’t give anything away just yet!

Til next time, Michela x

Back to the beginning – part 2

Today’s post is a continuation of last week, if you haven’t read it yet, you can find it here, and so, we continue the Back to the Beginning series.

The morning after Nick was admitted to hospital, I rushed down by 7am, he look comfortable enough sitting up in bed, watching the morning news. I was expecting him to tell me they were scheduling his gallstone operation, or that some more tests had actually confirmed reflux, but when he started to tell me what the Doctors were 99% sure of, my head started to race..

Pancreatic cancer, what the hell is that? Is it treatable? Do they know we have a 6 month old baby? What’s a pancreas??? And so, he filled me in and with that, came the grim reality, that the survival is approx 6 months from diagnosis, this was serious.

That day Nick had a biopsy that confirmed, it was indeed pancreatic cancer. Strangely enough, we felt some relief at this diagnosis, it meant Nick hadn’t been losing his mind, complaining all these months and also that we could just get on with the job of trying to fight it. Such was his attitude, that all he wanted to do was hit it with all he could and hope to be around past the 6 months they predicted. He hoped for a full year…this was someone who just the day before, was sitting on top of the world.

And so, we learnt everything we could about pancreatic cancer (thank god for iphones and google!). Though he didn’t fit the norm of a pancreatic cancer patient, the average age is 71, Nick was only 32, they are normally heavy drinkers, smokers and obese, he was none of these. The Doctors themselves were baffled, they asked if they could include him in a study, because it made no sense that someone like Nick would get this. We meet with our oncologist, he had no answers, Nick’s family had no history of cancer, at all. There was no good news, he had advanced pancreatic cancer. It’s called the silent cancer, because you generally don’t know you have it, til it’s too late. It’s not set in stages like most cancers we’re familiar with, because most times, it too far gone, but if you needed a number, Nick’s was classified stage 4, terminal.

Terminal sounds so cold and final, but it was our reality. From the day of his diagnosis, we knew he wouldn’t be around for long. It was June 2010 and when Nick pushed our oncologist for an end date, he said, he’d be lucky to make it past Christmas that same year. Boom, we made it to February, suck that Doc! (ok, there’s my widow’s humour, sorry!)

And so, we started treatment, radiation and chemo, 6 days a week. He sat in his chemo chair for 6-9 hours a time, if things went wrong, sometimes longer. This became our life, one of being poked for blood samples every morning, doctor appointments for progress updates, radiation and chemo, countless pills and injections. It was relentless, and tiring. Sometimes, I bought our daughter to keep him company, but more often than not, we relied on our wonderful family support to drop her off and keep her away from hospital nasties and long hours of boredom. I also need to thank all our family and friends who would drop by during these long chemo sessions to provide some company and me a little break to grab a coffee.  If i didn’t say it then, please know how much Nick and I appreciated these visits. Of course, he would also spend much of his morning on the phone in his chemo chair, rallying people to come past, did you ever get one of these calls ? ‘Mate, we both know you don’t do any work, come see me!’

Back to the beginning - part 2
Nick having chemo with his favourite girl

During this time, we were always honest and upfront with our family and friends about Nick’s situation. This was a lot harder on everyone else, than it was on us. I think faking that it was going to be ok, would have made his passing all the more difficult. In fact, i’m a strong believer that those, that took his death the hardest, were never honest enough, to believe it was going to happen. Knowing the reality, made it easier for me to accept. Sure, he always hoped to be the miracle patient that would recover and live another 60 years, but the results always told us otherwise. All that the radiation and chemo managed to do, was slow down the growth of his cancer. It had already taken over 3/4 of his pancreas, that had swollen to 3 times it normal size. This is what had caused his back and chest pain, it was pushing on all his organs, outgrowing its little hiding place in his chest.

With all this treatment, came the weight loss. He went from a fit and healthy 110kg, (promise this was mostly made up of muscle) to his end weight of 44kg and the ongoing joke that he could wear my jeans. It was when the weight initially started to drop, that he loved the most. All of a sudden, he almost looked good being sick. He could finally wear skinny jeans and fitted shirts, he liked the new Nick.  (On an off note, he never lost his hair, its a myth that all chemo patients do this, as we learnt, it depends on the type of chemo administered and this was not one of his side effects.) People who didn’t know he was sick, told him how good he was looking, was he doing something different? , ‘Yeah, chemo’ he’d joke. On our off days or when we had time left in the day, we would head out. He never wanted to stay home unless he was feeling really sick, but normally he’d suck it up and pop a morphine lollipop for the road. (Yes, these are a real thing, not so great if you have kids around though!)

How our life had changed, from planning our future to living this repetitive hospital life instead, always hoping for something positive, but ultimately knowing it was fruitless to look too far ahead in time.

This post has gone on for long enough, I hope i’ve kept your attention so far.     I’ll continue this series next week, when i’ll further discuss Nick’s positive state of mind even during this dark time.

Til then, Michela x

Back to the beginning - part 2
Us enjoying some time out

 

Back to the beginning

Today i’d like to take you back to the beginning, back to the diagnosis, that
ultimately lead to my late husband’s death. Many of you reading, may not know our story, so thought i’d give you a glimpse into this moment in time.

We had a picture perfect life, together for 10 years, married for 6, (I was a young 24 year old bride!!), we had a home we loved, we were financially sound, busy social lives, loved our families, were both enjoying success in our careers and had just had a beautiful baby girl. Plus thanks to my husband, we also had a 10 year plan for the next stage of our lives, but cancer was not something he had factored in.

In January 2010, Nick began experiencing chest pains. Being the avid gym junkie that he was, he first put it down to lifting too much and straining muscles etc, but when massages and sticking to cardio only, didnt alleviate the problem, he began to look into other reasons. He’d describe it as a burning and pulling sensation, most of the time it was manageable, but annoying. So, he started to live off Gaviscon, I still can’t look at those blue bottles now, without cringing. Thinking he had really bad reflux, he always had two bottles going at a time, swigging from them, like an alcoholic minus the brown paper bag. But nothing was making this pain go away, now leading to sleepless nights and a loss of appetite.

So, we started the doctor appointments, including hospital emergency rooms waits, but still no answers, they all thought it must be reflux or a burnt stomach lining, he was so fit and healthy and tests showed up clear. More medication followed, and he only got worse. Though, you wouldn’t know it, he hid his pain well, never taking a day off work.

By now it was June 2010, when it all came to a head. He was interstate in Tasmania on a 2 night stay and I was home with our baby, who was only about 6 months at the time, when he called to say he was coming home early, the pain was really starting to get to him and he just wanted to get a good night rest at home, if he could. I was slightly worried, as it was so out of character for him, he loved his interstate jaunts, nights out eating, drinking and socialising, it’s what he did well!

Once he was home that Thursday night, he told me the pain was getting so bad, he was going to the Epworth emergency department and was not leaving til he had some answers. He refused to let me come with him, not wanting us to both have to sit there all night. I always remember that time, him pulling out the driveway, my daughter in my arms as we waved Daddy goodbye, never realising it was the last time we would ever be the same again.

Nick told the story that once he arrived at Epworth Hospital, he ranted and raved til someone saw him, he was so over not getting answers, being polite was not helping his cause. That night, the Doctor in charge saw Nick quickly. He told me later, that Nick was making such a scene, he just wanted to shut him up. Those who knew Nick, i’m sure would believe this, he always got his way! This Doctor was the only one who really listened, after going through all his recent medical history, he uttered the words to Nick, ‘I hope i’m wrong, but I think you have cancer’.

He was admitted to hospital that night. He didn’t tell me what he had discussed with the doctor, just a phone call, to say he was staying overnight to get some pain relief and some tests done in the morning. He said they thought it was nothing serious, maybe gallstones.

He told no one why he was admitted, he spent the night without me to comfort him. Later I received an onslaught of text messages from him, ‘i love you and my baby girl’ and ‘come as soon as she’s awake in the morning, even if its 5am‘ , that’s when I started to get suspicious…

I have decided to split this into two posts, so stay tuned for Part Two: the diagnosis, treatment and our handling of this situation.

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Til next time, Michela x

Us in late 2009, i'm 9 months pregnant with our daughter.
Us in late 2009, i’m 9 months pregnant with our daughter here, with no idea of how life changing the next year would be!