Eowind

cat'owner', husband, cyclist, coder, gamer.. battling bile duct cancer....
Tweets are private, sarkasm is a thing,
Retweets = interest, not always agreement!

[Eowind @eowind]

This is Linda ,his wife. I'm sorry too say but Sami lost his battle against cancer on tuesday the 5 of January.❤️ He was not afraid and was not in pain.
Words cannot describe the pain and the lost I'm feeling❤️

[Eowind @eowind]

The only thing I can do by myself to help improve the situation was from my oncologist: activate yourself.
Så that's what I'll do then.
Physically: Walk, even if it's short distances.
Mentally: puzzles, crosswords. In my case code? Just a couple of minutes

[Eowind @eowind]

Spent today on the phone with closest ones informing that the last stent did not work and we should prepare for the worst as liver values still going wrong direction.
On leave for the night from the hospital, back tomorrow for glucose IV. Continue like that until Monday.

[Eowind @eowind]

Meeting my palliative doctor on Monday, hopefully nurse at home to help with IV after that.
Not giving up, slight chance bilirubin values will get better, but smaller every day.
My parents are in denial, I don't blame them. They should't outlive their son!

[Eowind @eowind]

@JonassonJenni Yes, he's the best

[Eowind @eowind]

Hmm. My doctor's want me to start thinking of the scenario when thing do not turn good this time. At least to visit the thought from time to time.
ERCP managed to put a temp solution in place, hopefully good enough to get rid of jaundice.

[Eowind @eowind]

Next in line for ERCP. Within the hour. Starting to get nervous again. And hungry, haven't eaten for 24 hours other than glucose IV. hope they find where the bile passage is blocked and are able to fix it. Don't know what happens if they can't

[Eowind @eowind]

Still waiting on preliminary time in 50 minutes. There is a risk that it will pushed into the morning as holidays. I would like to blame covid for the delay but I honestly don't know and these priority lists change all the time due to sicker patients arriving.
No jaundice at all!

[Eowind @eowind]

ERCP is planned some time today or evening. The susrgeons were quite clear that the chances for it to work were lower than last time.but they recommended the procedure as bilirubin value is 387. Now back to sleep til they come fetch me 😴
☃️ 🌨️

[Eowind @eowind]

@ogcancerpatient @nicoleeytweets After one PICC-line and 7 different PVC that clogged I was given a Titanium Port. And did that change my life. It just works and when not at the hospital, I don't have anything sticking out from my body. I.e. can take a bath!

[Eowind @eowind]

Bilirubin level should have gone from 150 to below 100, instead it was 280 yesterday and now over 400.
ERCP time again today or tomorrow 😔, hopefully tomorrow as no fever and specialists are back... We'll see. Skin is yellow as well... Bile duct and jaundice really messed up

[Eowind @eowind]

I made a video update of all the stuff that has happened since last weekend. https://t.co/WR5ifjeY72
Thanks to all healthcare workers making sure that we patients get the best care during the holidays!
🌲☃️🎁☃️🌲☃️🎁☃️🌲☃️🎁☃️🌲

[Eowind @eowind]

And from the next step of analysis of my biopsy I might be eligible for a medical study. Requires that the cancer has a mutation and there is 10% chance.
Best Xmas gift this year, hope!

Thanks to all healthcare workers taking the extra steps for their patients!

[Eowind @eowind]

To have ones oncologist call at eight in the evening the day before Xmas to discuss possibilities forward and give hope just baffles my mind. Totally different tone of hope compared to talking with surgeon and palliative team.

[Eowind @eowind]

Chemo and radio has had massive effect according to operator that changed stent on Friday. Stent had gone from bile duct to the duodenum due to almost 'melted?' tissue. New one is in place. Next to get back on chemo ASAP when liver values allow for it. Labs on Monday!

[Eowind @eowind]

@TASPSU83 Same here. Just hope there is time 🤪

[Eowind @eowind]

Once again deciding to not give up even though cancer has spread in my liver.
One day at a time. But #cancer has it too easy in our bodies... Would be nice with more research on #bileductcancer, it is not one of the hip ones and gets little exposure 😢

[Eowind @eowind]

@sinustakykard Saknar känslan av en mile i benen!

[Eowind @eowind]

Today we received bad news from the liver biopsy. My bile duct cancer has spread inside the liver.
We'll meet the palliative team tomorrow. And then hopefully home if I feel confident with new medicines. We'll see in the morning.
Brain cycles will be spent analysing this tonight