My insides betrayed me Pt 2

Part 2 of my Pancreatic Cancer journey

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If you haven’t read Part 1 you can read that here

I remember being wheeled into surgery and being in tears and one of the support staff saying “what are you crying for” and that was the start to my surgery. What a start haha

After the surgery, which ended up taking almost 10 hours instead of the 4 they originally said, I was wheeled into ICU until I woke up. (The surgery is described in Part 1)

They had accidentally cut a vein while operating and I had lost 2 1/2 liters of blood.

I opened my eyes to my hubby holding my hand, he had a stressful day. I can’t imagine how it felt to be told it would be 4 hours and left pacing for so much longer with no contact.

As he held my hand the doctors gave me some medicine I needed after having 2/3 of my pancreas removed. (Apologies it was 12 years ago and I now can’t remember what it was called)

As they gave it to me my body reacted and I went into a convulsion type reaction so hubby got my hands ripped out of his and he was pushed out while they dealt with that. He only got to see me for a matter of minutes.

Finally around midnight they could wheel me to my bed on the high dependency unit, which is next to the nurses station.

Not long after my hubby had left, my nurses arrived ready to give me some more of that same medicine in the same way.

Luckily I was awake and able to tell them “no they decided it needed to be given to me via needle and not the drip.” They said they had to go check and came back saying yes you are correct. This needle became an every day thing in my stomach and thighs.

One of those nurses is the only one I remember the name of. His name was Lee and he was my main nurse for the first almost 2 weeks. He was also my favorite.

The first couple of days are a blur. Lots of sleep and morphine and sponge baths, oh and having my teeth brushed for me.

On Day 2 they had me standing up next to the bed, then the next day walking to the end of the bed, then around the bed etc to get me on my feet and moving.

I had tubes and catheters coming out from all directions.

On day 5 they removed my catheter and morphine drip and said I would start on clear fluids.

So I was only left with the cannula coming from one of my arms and the nasal gastric tube out of my nose at this stage.

My beautiful hubby was by my side every single day while amazing friends and family looked after our son and my older two children stayed with their dad.

In one of my coughing fits I accidentally coughed up the nasal gastric tubes that went into my stomach to aspirate the bile out. Little did I know what kind of consequence that would have…

After a few days on clear fluids and soft jellies my stomach became distended which then led to a bile vomit I will never forget. And losing my spongebob nighty that I had bought especially for the hospital stay. It accidentally got thrown in with the bedding. I was so upset.

Because of the distended stomach, it meant I had to have those tubes reinserted through my nose while I was awake. That I will never forget either. Especially the part where the nurse was putting it in and went oh that felt like it went into your lung. Um what? Is that even possible? I do know she had to pull it back out a chunk and try again though. Not fun at all.

Due to the distention in my stomach it was assumed the muscles had stopped contracting due to the surgery so I was put on a fluids through the drip only diet. Paralysed stomach for me yay. Not.

Not long after this I was given the gift of my own room. Sometimes I think they felt sorry for me because I had projectile vomited all over myself haha

If you have ever seen the high dependency unit you will know how much of a gift this is.

For example, while in that unit I had my neighbor rip out his iv squirting blood all over the curtain while I was out walking with Rory. I came back to a smell of blood so strong the nurses asked me to come back later so they could clean up. Yuck. I am definitely not a vampire. And also 2 falls that the nurses got in trouble for because we had to tell them they happened. A person with Angel-something which meant he was 22 but the age of a child so he had Mickey Mouse clubhouse playing constantly. And I didn’t get much sleep because it’s always on – lights, people, everything.

So when given this gift I was super happy and the way the nurse told me it was happening was so cute too. She sat down on the end of my bed with the cutest look on her face saying they have a surprise for me. “We are giving you your own room” was the next statement with her eyes so wide and a big smile on her face.

By this time I had a reaction to the potassium they were putting in my drip and it burned so they had to drip it slowly which meant going without fluids for 8 hours. Which was not possible or good to do.

So they sent me for another CT scan, which thankfully the fluid for that seemed to flush my vein and it was fine from then on.

But they forgot about me down there. And they left me laying in bed for over an hour next to the patients receiving chemo. I will never forget that smell. And the sadness because two of the people were so young too. So that was a bit scary wondering if that would be me soon. I cried a few times while waiting to be wheeled back up to my room.

Poor Rory had been left waiting. Again. When I say he was with me every day I mean it.

After a day or two of fluids it was decided I needed to have a PICC line inserted so that they could give me vitamins and minerals straight into a main vein. And this was supposed to mean no more cannulas.

They were taking bloods daily to check on me and I’d had 2 blood transfusions due to the blood loss as well so I was definitely a pin cushion already.

I knew my veins were disappearing though but the PICC line procedure confirmed it. By the end of the 3 weeks they were struggling to get blood from any vein. Sometimes no blood coming out at all.

During the PICC line insertion I was in tears while this woman tried to get it to go in, it was so painful, and this woman kept saying if I can’t get it in we have a big problem. She could see the vein on the screen but she couldn’t get the line in. Saying it was too small and wouldn’t work. That was scary.

Thankfully she eventually got her supervisor to come in, who got it in one go and it was done. I breathed the biggest sigh of relief. Maybe had some more tears too.

And that was me up until a few days before I left.

No food, no drinks, nothing except what came in through those lines.

I remember feeling so grossed out for the nurses who had to aspirate the bile out of my stomach.

I remember them putting cold water through my nasal gastric tube for a scan and my body automatically gulping as it felt the coldness go down because it felt so good and real.

That tube also ended up giving me the sorest throat. I asked for some numbing gel to try and help with the soreness but that didn’t do much either.

It wasn’t until the last week that I let my youngest son come to visit.

And that was a mistake.

He was so scared of me (he was only 1) because I had tubes coming out of my nose and arms and shoulder. He wouldn’t come to me at all and cried when he looked at me.

Even writing this the emotions come flooding back.

That night I wailed and cried. A nurse came in and asked me what was wrong and all I said was I want to get out of here I want to go home.

I was done by then. I don’t know how people do even longer stints. Even though I had given birth to my 3 children there, it just depressed me.

I had to ask for help every time I wanted to shower because of all the tubes. In the first week or so I had to be showered by one of the nurses. I remember my period arriving while being showered by Lee and feeling embarrassed. Talk about leaning into support. When I could shower myself I still had to wait for a nurse to come and organize all my cannulas.

I read the entire twilight series while I was in there.

I had to leave the ward every meal time because the smell of the food was so overpowering and I was hungry and couldn’t eat.

One time when we had left the ward Rory and I were sitting on a seat out in the halls and a woman came and sat down beside us with her yummy smelling food and I said to Rory can we go please. It took a minute for him to realize the smell of the food and then he jumped up to help me leave. It was funny now that I look back on it.

This whole time I was in there was filled with different advice and plans of attack. It kept changing and that was annoying in itself.

6 months chemo, no we will do radiation, actually no we won’t. It’s slow growing, no it’s fast growing, actually no it is slow growing. There was some of the tumour left, some cancer cells left.

Back and forth.

When I left hospital they still didn’t know what they were going to do. They had to have meetings with hospitals around the world to discuss what they had done with cases like mine before choosing anything for me.

When I finally had my drains pulled out and the tubes taken out of my arms and that nose tube pulled out I was so happy.

I remember giggling because to pull the staples out they used a normal old staple remover. I thought they would have had some special tool but no they did not.

Whipple procedure scar. Can you see the staple holes and drain holes?

It was finally coming to an end. The hospital part anyway.

I had amazing nurses who would come in and crack jokes with me. Some spoke in funny accents, some showered me, some gave me comfort when I was over it.

My surgeon was beyond amazing. I had to see him for the next 5 years after discharge.

I also had to have CT scans every week, then 2 weeks, then monthly, then 6 monthly until they got to yearly, to make sure the tumour hadn’t grown back.

They decided on that form of action because I was so young and they didn’t want to do anything that may cause bigger, further problems down the track for me if they didn’t need to.

I am so grateful that is what they chose for me. And that it was an option for me. I know for many others that just isn’t the case.

It took me a long while to have the energy to walk anything further than from my bedroom to my lounge. That would often put me straight into needing a nap.

You can imagine all the muscle had dropped off me by this point and I was just bone. The loose skin from this has been part of my journey to self love over the years. I blew up 8 kgs of fluid at one stage in the hospital and then that dropped in a day.

I would feel guilty when people would come to visit because I would get so tired easily and wouldn’t be up to much of one.

My stomach lost feeling on the scar side and that followed over into my vulva region. Losing feeling there was not a fun thing to experience. It is only now, 12 years later that I can feel things on my stomach where it was dead. So progress right?!

And this year (2021) I had a yoni mapping session done where I didn’t even realise there was numbness inside my vulva. What an amazing experience to release some trauma.

My first meal when I got out was a mince and cheese pie from a bakery in Redcliffe. After not eating for weeks I had said “you could feed me a cockroach dipped in chocolate and I would eat it, that’s how hungry I am”. But those weeks in the hospital I had daydreamed about this pie and so I had one. If you are a kiwi you know what I’m talking about. They are hard to come by in Australia.

I ate subway on the second day of being out and my body did not like that at all…

They told me I would never be able to eat normally again and would need to be careful with what I eat. I take Creon to help me with my digestion.

I have a risk of developing diabetes due to only having 1/3, the tail end, of my pancreas. But 12 years later that hasn’t happened so I’m pretty happy.

If you know how much I love sweets and cake and icecream you will know how awesome that is.

I went vegetarian for 7 years because my body stopped digesting meat but then one day I felt the urge to try some chicken and my body was fine with it again.

Life is as normal as it was before the operation these days.

No more scans, although the doctor has told me to go get one done anytime I have some weird pains just to be safe.

I used to feel a little fear when it came round to scan times wondering if something would show like the first time, but other than that I never felt afraid that the tumour was going to kill me.

And I don’t feel fear that it’s going to come back.

Because my lifestyle these days is so much healthier than it was back then. I consume everything differently for not only my body but my mind and soul as well.

True health is so much more than just what goes in your mouth.

Pancreatic cancer doesn’t really have a cause. They think it may be linked to smoking, diet and all the usual cancer causes but they don’t actually know.

I remember a nurse asking me all these questions about whether I smoked etc trying to figure out how this happened to me.

So today I live my life feeling blessed that I experienced all of that and I am still here to share about it.

Personally I wrote another blog about what I believe caused my cancer and you can read that here. Of course these are my personal opinions so you can choose to take it or leave it.

What a journey!

If this is a journey you are taking please ensure you have amazing support people around you. People who lift you up, who don’t fall into the fear as it is easy to do.

Our bodies speak to us if we are listening.

Sending so much love today, tomorrow and for eternity ❤️

Xo S

1 comments on “My insides betrayed me Pt 2”

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