My story part 9 – 9/10 “playing with death”

08/25/2013

This post is also available in: Norwegian Bokmål

This is so hard for me that I unfortunately can’t go into details about everything! 

230920101065

I was struggling with the appetite, but that wasn’t really that unexpected when it’s incredibly painful when it comes out again. Not a lot of it comes out through the stoma any more; the wound on my stomach has of course burst open again… it’s huge. Not one huge hole, nope, there’s 3 gaping holes on my stomach, and this I have to endure for months. If you’re someone that has had stoma equipment fitted you’ll know this… Imagine how it is trying to close up a 15cm crater on your stomach! It has been burnt into my memory watching pills come out through a hole in my stomach and it still has 5mg written on it… it hasn’t been very effective then, to put it that way. I can barely stand thinking back to what I went through. Lots of bad memories. It is painful to look at photos and see what the doctors wrote and didn’t write in my journal. This is so hard for me that I unfortunately can’t go into details about everything!

The wound had to heal and they wouldn’t operate on my intestines before the wound on my stomach was better, so I had to go through a new period of just waiting. The days were long and the hours longer. I felt it was becoming harder and harder to be away from the kids, they would rather not come visit me in the hospital that often as they were sick of people dressed in white. I had nurses tending to the wound on my stomach – tried to make it as tight as possible but they were of course in a hurry so everything was rushed. And as you know haste makes waste, and the person having to bear the consequences was me.

I lost count how many times I got a leakage after the nurse had been there changing on my wounds… What do you do then? In the end you become sore, frustrated and pissed off. Daniel could see that when the stoma nurse and the regular people were there it was fine, but as soon someone from the staffing agency was there it all went to shits. I didn’t know them and they had never seen a wound like that etc. So I had to once again tell them how to do it and train them. I was so down that in the end Daniel started doing it himself. He was there day and night so it took longer for him to call for help than him doing it himself. IT SHOULDN’T BE LIKE THAT!!! He has done so much he really should not have had to worry about. But he could see that if things weren’t done properly they had to do it again straight after… And tending/rinsing the wound was incredibly painful. Worse than the first one I had.

230920101064

13

The hardship and misery was wearing on us as a family, and I was set in that I was going to be home on Christmas Eve for the kids’ sake. That’s when I was told from my local council that they wouldn’t tend to my wound so I could celebrate Christmas in hospital instead. You can make that a nice enough celebration… Fuck, that’s enough! I can tell you there is nothing nice about staying in hospital for that long. I had my morphine pump with me and a wound I couldn’t trust. The holes on my stomach were so large at that point that nothing came through the stoma and everything came out through the holes. It was.. Well I don’t have to say anything more about it… My stomach was bright red and full of pus – nothing would attach properly then. I spent a lot of time in the shower or bathtub just to withstand the pain.

IMG_0107

13b

Then I could just rinse off the stomach content and there I would stay. I would sit there for hours. It is tough to think back to that time because it was challenging for everyone around me too. They couldn’t plan anything because they never knew if I was feeling ok, was having surgery or had another infection. I could be feeling great in the morning and be on my way into surgery in the evening, it turned quicker than the weather in Norway.

Then try to imagine how it was like trying to be a family. It was more important than in a long time to try and have as normal a Christmas as possible. I was going to be home for 2-3 days during Christmas. I had nurses to tend my wound and change the morphine and the tubes in the morphine pump. But could the council help? Nooo, I didn’t have cancer so I wasn’t in the right category to get help! The end of the story was that we drove twice a day to St Olav to clean my wound and change the tubes to the pump. That’s a 1 hour drive one way. Something that was very draining for Daniel. He almost went off the road twice in the 9 months because of lack of sleep. Nothing happened, but it very easily could have! It’s terrible to think back to that! The hospital couldn’t understand why there was so much “resistance” and no accommodation from my local council, and it was a really rough period for me. I was weak and had enough taking one hour at a time.

IMG_0167

So Daniel thought there HAS to be an easy solution to this? All they had to do was show at the hospital to get training. The council of Stjørdal had a running offer for training… No-one showed up!!! That’s when you feel rather worthless. A friend of mine came and helped us “outside of work” during Christmas, so I didn’t have to drive in on Christmas Eve to change the tube in the morphine pump. What you have an example of there is bad treatment of patients and absolutely no understanding for my situation. Did I mention that while I was drugged down at the hospital incapable of moving, Daniel tried to contact NAV (the Norwegian Social Security Dept.) to get an agreement happening for me to not show up personally. The answer he got is terrifying. They refused to even meet with Daniel without me present to respect my privacy. That is rather difficult when I’m on a different planet, to put it mildly.. I’d like to point out that there are so many exceptional nurses out there, but they have people above them controlling them that really should not be there! Money and politics has the power, and that makes the people at the bottom of the food chain suffer… All respect to them for managing to come to work and work hard even though the people above them doesn’t understand shit about patient treatment.

IMG_0131

The night before Christmas Eve was spent on the floor in front of the heater at mum and dad’s place. I was lying on a mattress with a plastic sheet and with several water bottles. Why? Because it was impossible to keep my stomach and stoma clean, so I was lying on my side letting feces run down my stomach to the plastic sheet and onto a towel I had there. Splashed water onto it so it wouldn’t burn my skin so much and dried it with a hairdryer after. No, I didn’t sleep that night either. It was unbelievably painful and an “out of body” experience, but I knew if I laid like that then Daniel could sleep a whole night without helping me with my stomach… I was incapable of turning or getting up without help, so if I had to go to the bathroom I had to call mum on my cell phone. Or yell out loudly. I was lying there waiting to push the button on the morphine pump. It had a timer so I had to wait 3 hours between each time, then I could finally have an hour with a little less pain!

IMG_0124

As mentioned we tried to make Christmas as normal as possible with my family. Grandma Stina – my mum and grandpa Stein Morten – my dad, has been the rocks for me together with Daniel through this period. I am forever grateful for having the world’s best family! THANKS FOR EVERYTHING…

julekort 1

julekort 2

julekort 3

 

Tuva had a Christmas wish:

What do you want for Christmas Tuva? Mum will get you whatever you want…. (ouch, she’s going to tell me she wants a horse or something like that, I thought). Tuva: What I want the most is for you to get well mum….. Sigh, perhaps the only thing I cannot give her! Tears were running down my cheek when she goes: I can wish for a Hannah Montana wig too mum….

 

Everyone wanted to come visit and everyone sent me flowers – was I dying?
I was scared to death and tough at the same time!
I fought a battle every day and I think I did well. It would have been easy to give up at several points, but all I had to do was look around me and look at all the pictures and poems the kids had made for me and hung in my room. It gave me strength to battle on! The tears were there every day but I had to keep fighting. Not only for myself. I fought for my kids, Daniel, my family, my friends, and also for anyone that comes after me! NO-ONE SHOULD HAVE TO EXPERIENCE THIS!!! I wrote in a diary to document everything.

IMG_0147

To put it mildly, the hospital journal does not match my diary. 

Bilde 028

To put it mildly, the hospital journal does not match my diary. And I wasn’t writing it by myself, the days I couldn’t write myself, mum, Daniel or the ones visiting me would write. I had my auntie, “the best auntie in the world An-Magritt” taking photos for me, so many things were written down and documented. I was so scared and unsure that I needed proof to show my kids that I wasn’t in the hospital voluntarily. I was seriously ill and I thought about them every day.

Mum loves you so much Elias, Tuva and Vilde <3

Finally the day arrived, all test results were fine and I had finally got a handle on all the infections. I had gained some weight and my blood pressure was ok. So they had approved me for surgery after many let-downs and push-backs. I never managed to trust that it would actually happen, but that was because I had been given the green light many times and had to suffer the disappointment when it didn’t happen. I understand why the doctors didn’t want to operate on me when my general condition was so bad. But there and then it felt really unfair, one day or one week or one month became SO much longer when all I did was wait! I had many rounds with myself and eventually I managed to get my paint to the hospital. I couldn’t do much with it, but it was nice to draw or paint a bit every now and then. Plus music – if I didn’t keep getting new music to listen to I would’ve gone completely mad. Music is great therapy, at least for me! I would lay there listening to the lyrics and become part of the song – it became a way to survive, to keep my motivation up and make the hours pass. I saw everything there was to see on TV, and in the end you are watching a re-run of a re-run… That is when you realise you’ve spent too long in a hospital bed 🙁

The day of my surgery had arrived, and I was as usual was more scared of taking the lift than the actual surgery. I was “drugged” down pretty heavily in my room before I was taken down to surgery. But I cried – in anger and frustration. We were getting closer to the lift and I panicked, I DID NOT want to take the lift (I have really bad claustrophobia). I became hysterical, cried and was on my way out of the bed, because I wanted to walk! The nurses could not convince me otherwise and I was not listening! In the end Daniel had lay down on top of me to hold me down “with force”, he put one leg over my hips and used both hands to keep me in my bed. I was so angry and very disappointed that Daniel would let them take me in the lift and not let me walk on my own. I was strong and I remember quite well putting up a good fight against Daniel, I was relatively strong and Daniel didn’t like that he had to hold me so hard. But I wouldn’t have been able to walk on my own, and to carry me down the stairs with all the tubes attached to me wasn’t an option. I was hitting around me and tried to get away and out of the bed, but lost against Daniel… My Daniel – that was a tough one to swallow. Daniel was completely overwhelmed by having to “hurt” his wife that much. We managed to get downstairs and I was quite distressed so they sedated me right away. I could hear from far away in the distance…

“Everything will be ok – it will be ok Ingrid. I love you”

I didn’t say anything back… I was too tired, disappointed and couldn’t take any more. I’d rather just not wake up. Wouldn’t it be best for everyone if I just died. All I am is a burden for everyone and I can’t take this much longer!
When I woke up I wasn’t sure if I was in heaven or if I was alive. I was unsure for quite a while… Until Daniel came in to me 🙂 Daniel’s beautiful eyes looked at me! I was as usual very angry, I normally am after surgery, it’s a side-effect from all the drugs. Not a good feeling, but that’s just how it is. Then I hear him say… It was successful because she is angry 🙂 hehe

They told me they had removed a lot of my intestines and given me a new stoma. Now I only had about 2 metres left of my small intestine. My large intestine was removed many years ago when I got stoma the first time. So you can believe that food passes quickly through the system, not much gets taken up so I don’t get much nourishment. The only positive thing is I will never get fat. 🙂

Everything looked like it would be ok. The surgery went to plan, but I was really far down. I was under heavy observation and under large amounts of painkillers for a long time. It took several days before I recovered and there were early signs that something wasn’t quite right this time either.

Bilde 024