Lunch : Well 20 steroids a day is going to make... - CLL Support

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Lunch

Sepsur
Sepsur

Well 20 steroids a day is going to make sleep interestingly rare. Very poor day at The Christie today. They can’t locate biopsies from last week & bleed around lung will preclude me from trial

65 Replies
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Oh dear. So sorry for such a less than ideal day. Hang in there. We are all rooting for you. You’ve beaten bad odds and huge problems before. You’ll beat this too.

Sepsur
Sepsur
in reply to AdrianUK

Yes that’s true & thankyou for the encouragement

AdrianUK
AdrianUK
in reply to Sepsur

On a practical point, do you need treatment straight away? Or could they fix up the lung (depending on what it is...) get you better then treat?

Sepsur
Sepsur
in reply to AdrianUK

That is half the issue - biopsy on lung is the crux

AdrianUK
AdrianUK
in reply to Sepsur

Yeh. That’s kinda important. Amazing they have “lost” it!? What’s the plan there go searching in the lab some more?

Sepsur
Sepsur
in reply to AdrianUK

That’s what I believe. Tomorrow they decide to send me to Wythenshawe (or not) because pleural effusion will probably have congealed because it contained so much blood - needing specialist chest surgery at Wythenshawe

HiddenThis reply has been deleted
Newdawn
NewdawnAdministrator
in reply to Hidden

Says the image is not presently available to people from European countries Scott whilst they ‘work to protect our data privacy’ or something.

Newdawn

Newdawn
NewdawnAdministrator

Are those steroids making you ravenous Sepsur? You’ll need more than a mince pie!

Stay strong, it’s a total bleep, bleep, bleep but you’ll get there in the end!

Newdawn

Sepsur
Sepsur
in reply to Newdawn

The hunger wolf has just set in. Looks like I am heading to Wythenshawe for chest drain ( decision tomorrow). Then again, every certainty on Friday - evaporated today. Very dubious of probability of this being the way forward for sure.

Shedman
Shedman
in reply to Sepsur

So sorry for your news.

Not read your biopsy story, so don’t know your symptom history..

My pleural effusion a year ago proved to be submassive PE.

A close call between senior renal and his junior, but junior won the day in suspecting PE; so, rather than draining fluid with large needle, injections for blood thinning.. the latter is not best where there is a large drainage hole created..

Steroids: I’m guessing those many are spaced at regular intervals through the day? Or is it large doses a few times a day? That was my situation a year ago for a month or three. I did not resist doctor’s instructions/hopes that i gain weight - but i was an odd creature for quite some time and eating for two.

Lots of folk here will be keeping fingers crossed for you. I will be hoping the medics, in spite of this biopsy going missing, make the right decision for your care and treatment.

Stay strong. We are all in this together.

Sepsur
Sepsur
in reply to Shedman

Thankyou

I think those ‘tell tale ‘ crumbs mean one mince pie has been eaten ! Yummy.....

Sepsur I do hope you get this sorted out soon, and if you have not had one ask for a bone density scan, as steroids can I believe, affect bones long term.

Regards

Colette x

Sepsur
Sepsur
in reply to mrsjsmith

As if by premonition, our charity has organised a body composition & bone density workshop ( wrong word - can’t think at present) in the Spring. We have the professional input & guidance of various specialist NHS staff( voluntarily) because they wish to study us - a guinea pig group of ICU survivors.

Interestingly, we can hire the machines & their operatives cheaper away from the hospital than attending sessions in hospital.

I was already eager to be involved, now it has more significance.

mrsjsmith
mrsjsmith
in reply to Sepsur

Sounds interesting, do report back.

Sepsur
Sepsur
in reply to mrsjsmith

Will do 😀

Jm954
Jm954Administrator

Pooh to the results not being available and the bleed around the lung. :( :( :(

However, all those steroids mean you will be buzzing so get that Christmas 'to do' list out and work your way through it!! :)

Hope you get your answers soon Sepsur, you've been through enough in your time.

Best wishes

Jackie

Sepsur
Sepsur
in reply to Jm954

Thank you - last time I was on 10 a day and I found that even when eating, I felt ravenous, salivating as I thought about other food.😳 Now I’m on 20

Jm954
Jm954Administrator
in reply to Sepsur

Everyone had better watch out then!! :) :)

Sepsur
Sepsur
in reply to Jm954

Cannibal in Cheshire?

Wow! And I thought that five steroids a day for a week was bad. I couldn't sleep the whole time and then the days after they wore off I was so tired. I feel for you. My nurse back then told my wife to be sure and take advantage of my extra energy and have me do extra chores around the house...LOL

I hope that they get things sorted out for you soon Sepsur. You sure have been through the ringer and I knot that you are ready to get back to reasonable health. Hang in there...:)

Chris

Sepsur
Sepsur
in reply to noeagaman

🤣🤣🤣- I’ll appreciate getting on the move again - I worked a 50hr week 2.5 weeks ago - unimaginable today.

I have a pile of logs that need shifting if you need a small job!!

Sepsur
Sepsur
in reply to camper2

🤣🤣

Newdawn
NewdawnAdministrator

I think shifting Yule logs is about your limit at the moment Sepsur! 😉

Hope you manage some sleep.

Newdawn

Sepsur
Sepsur
in reply to Newdawn

Wide awake!!!!

Newdawn
NewdawnAdministrator
in reply to Sepsur

You’re bound to be! Pity they couldn’t give you something to help you sleep. Having said that I rarely sleep in hospital.

Newdawn

Sepsur
Sepsur
in reply to Newdawn

Got home tonight again

Newdawn
NewdawnAdministrator
in reply to Sepsur

Oh so you’re home now?

Sepsur
Sepsur
in reply to Newdawn

Yes

Newdawn
NewdawnAdministrator

Well listen to some soothing music and hopefully you’ll manage some zzz’s.

Time for me to try I think. Glad you got home.

Regards,

Newdawn

Sepsur
Sepsur
in reply to Newdawn

🙏 - doing nothing tomorrow

Well the pie at least looks good? Thinking of you Sepsur.

Peggy

Sepsur
Sepsur
in reply to Peggy4

Yeh - it was tough to swallow in one

cllady01
cllady01Volunteer

Sepsur,

wishing for you: sleep and some better news for a change! I appreciate your sense of humor through all you are experiencing.

Sepsur
Sepsur
in reply to cllady01

🙏

So sorry to hear that!🥴 Wishing you all the best with whatever comes next. Enjoy you mince pie😋

Sepsur
Sepsur
in reply to MystyUK

🙏

Hope you will feel better soon. I love mince pies and it shows.

Sushibruno
Sushibruno
in reply to very

😂

Not a very nice Christmas present 😟Sepsur, as it sounds a really tough time.

Many many years ago my husband as a youngster lived in Wythenshawe. His mother was a cook in the kitchens in the hospital there (and a very good one!). It was built during the war, near to Ringway airport where the no.1 paratroop training school was. They dealt with a lot of burns in those days and also plastic surgery for the burns victims.

Just thought you might be interested during the wee small hours. Could you do some research into a subject you are interested in (Not CLL!), as the Internet is open all night.

Best wishes, hope they get it sorted soon.

Cx

PS I worked in medical records in our local hospital, and having turned the whole hospital upside down looking for missing notes, they were discovered propping up a table leg in the consultant's house.

Thank you - there were a few air bases - one near Warrington too became o freight airport after the war. But I remember talking to some older residence years ago, who spoke of all the Yanks flooding town with money & contraband

Sierrastar
Sierrastar
in reply to Sepsur

I was a child inYorkshire during the second world war.

The saying was “ The Yanks were overpaid, oversexed, and over here.”

We were damn glad to see them. Elizabeth.

Sepsur
Sepsur
in reply to Sierrastar

And the GIs retort was that the British troops were “Underpaid, undersexed & under Eisenhower” 😀

Interesting! I don’t think that happened in Wythenshawe!😉.

Cx

PS talk to us when you are finding it hard going, as you can be sure someone somewhere will be awake as well.

Dear Sepsur,

Thank you for your posts to me, particularly as you have been so ill.

May the force be with you,

Best wishes and good health,

Peter

👍🙏

Well, it is plain to see you have many friends in your corner and please know there are many more as well. You just hang in there and keep us posted when you are up to it.🙏💕☘️😍🎄 Panz

Sepsur
Sepsur
in reply to Panz

🙏👍

Sep,

You would think that the pharmaceutical companies could do a better job with the aesthetics presentation to improve appetite.

I am picturing the meds in a shaker in the form of Mrs. Dash's seasoning, or perhaps in a steak sauce, or even a salsa that could be topped over an omelet.

Ooh Grief, even alfalfa pellets have more appeal. I feel the need to Grandma come and cook for you.

Thank goodness for the pie. I hope this passes soon for you and a banquet is served.

JM

Sepsure you are in my prayers and hopes for easier journey for you.

How is it possible to loose records from very important investigations???

You have great inner strength and you will be victorious 🙏🏻🙏🏻🙏🏻

🤗

Dana

Oh crap !! So sorry ....well good luck sleeping let us know ok?

Sepsur
Sepsur
in reply to Stelladoro

Thank you

Praying for you now. 🙏

Thank you

Great.. Funny... Slightly disturbing picture! How frustrating for you the hospital lost something so important to you. Can't imagine buzzing on steroids, I am at the other end of scale at the moment. Hope this has some kind of resolution for you before Xmas, hang in there 🙂

Sepsur
Sepsur
in reply to Root65

Thank you

WOW, how many milligrams for each steroid pill?

Maria In GA

Sepsur
Sepsur
in reply to Mimi4times

Dexamethasone 20 x 2mg daily in one go

Mimi4times
Mimi4times
in reply to Sepsur

Get ready to blow up, weight wise. I was on 60 milligrams a day. Had to ween off and was done last March. My weight shifted all over; never been the same!

Maria In GA

JigFettler
JigFettlerVolunteer

What an intense time you are having Sepsur! Complexity, uncertainty, decision change, direction altered, tough choices.

Thank you for sharing with us!

Heartfelt very best wishes, strength, and courage to tough this one out.

Thinking of you!

Jig

Sepsur
Sepsur
in reply to JigFettler

Thank you - I must admit the steroids are reducing all the pressure from my nodes & making breathing easier - so my blood 02 saturation has risen from 92 to 97. Better pallor - still massively out of breath descending & ascending small staircase to grab cup of tea. So ‘feeling’ better is artificial kick from steroids - but temporary improvement is welcomed. Slept1/2hr first night but all night last night which also helps.

Man, what a heap to endure. Big sympathy and big hopes for your wellness Sepsur!

Sepsur
Sepsur
in reply to hawkeagle

Thank you

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