Auto sct - here we go.....

FormerMember over 5 years ago

43 replies
13 subscribers
43708 views

Hi all, I'm buckling up for the ride

See my personal info for the train crash of my journey so far...sorry for length

Yesterday had first chemo at Addenbrookes day unit about an hourish away. Given the GCSF that needs mixing together. Gave myself 2 jabs rather than leaving needle in for second syringeful...followed by a clexane chaser!

I hesitate to say this was the simplest bit...

Will return there for Auto stem cell harvest planned for next Tuesday and Wednesday (9/10th). Will stay in caravan nearby as hospital accomodation doesn't take dogs, obviously!

Transfer will be at my local hospital in Ipswich

Greatly encouraged by all your stories....in my moments of despondence and anger I know you're all there with your experiences and encouragement...if you can do it I'm going to give it a damn good try!

My husband is always there for me and takes one day at a time....he never reads up or anticipates anything, no questions or negative expectations. However I'm the questioner, reader, planner, preparing financialspreadsheets...info, dates etc for when I expire (sounds better than die or snuff it or shuffle off to rose cottage, lol). I'm learning to stay in the moment and breathe.....trying not to jump forward to all the things that can go wrong but taking notes of advice....avoiding mouth ulcers is a Biggie.

Veins not good after 2 courses of chemo. Pick line never worked well. In for central line this week...hope we can go for subclavian rather than neck. How does showering work?

CAR-T has been mentioned as being a possibility so there's hope if this doesn't work....last resort....let's get this over first with lots of crossed fingers as I'm really not that optimistic regarding long term.

Kudos to all with long term health conditions especially with pain issues.

I'm not sure I've got the strength to 'live long and prosper' Spock

Regards, Lynda xxx

FormerMember over 5 years ago in reply to FormerMember

Hi Lynda

Wishing you all the best for next week. You have had such a terrible time over the last 2 years, I really hope it goes smoothly for you and you will finally get to put all this behind you.

You must be so relieved to at last move forward. Lets hope the nasties are minimal.

I will keep my fingers crossed for you.

Tina

FormerMember over 5 years ago in reply to FormerMember

Hi all of you out there in the 'normal' world (although it is quieter in Ipswich hospital, not watching the very scary news reports of Armageddon)

I've got to.....day -2...Melphalan monday tomorrow then a day free before auto stem cells transplanted...I have a lot of them, apparently!

My kidneys were deemed not up to speed, hence day -0.5. I'll get a powdery nebulizer to coat and protect my lungs.

Lollies on order (the last lot were distributed amongst the inmates!)

Portable plastic bidet is in use today.

Saline mouth wash then difflam as required as per protocol.

Syringe driver with haloperidol has worked since start day -1 ..no nausea or vomiting until today and fine again, now.

Not looking forward to when symptoms hit but they really are watching me closely.

Have said definitely to expect infection (s)....mainly due to bowel bugs invading mucositic areas...nice!!!

All the best, Lynda xxx

Thehighlander over 5 years ago in reply to FormerMember

Lynda ((hugs))

Lets look for this to far less eventful then you have detailed above. At the start of each SCT my team said "you will defiantly get a few infections"........ I proved them wrong on both occasions........ just saved them all up for the years following SCT.

......go for the brain freeze tomorrow xx

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

FormerMember over 5 years ago in reply to FormerMember

Susan-d....thinking about you....how goes it?

Lynda.....a week behind you :-( xx

moomy over 5 years ago in reply to FormerMember

Best wishes, lovely folk!

pop in here when you feel able,

hugs xxx

Moomy

FormerMember over 5 years ago in reply to moomy

Hi all....big day 0 tomorrow.....still waiting for lung powder treatment today. Limpy but up and around. Bit concerned they've just informed me I have c. Diff....no real symptom problems .....?yet. Don't want to give me further antibiotics until it proves a problem apparently

Any suggestions for me?

Love Lynda of the haflingers xxxx

Thehighlander over 5 years ago in reply to FormerMember

As you are "Limpy but up and around” no reason why you can’t do some cartwheel in the corridor or is that just showing off?

BIG ((hugs))

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

FormerMember over 5 years ago in reply to Thehighlander

Well, I'm out on day +12. Boy, tough going....all those hours of sleeplessness. Now my brains fired up but body is having none of it. Had the 100 day talk yesterday. Didn't really think it would take as long....running on hb of 8.2 so may have transfusion tomorrow. Naive, huh?

Hope you're all ok out there...I'm watching bird feeders like a little old crazy woman xxxx

Lynda

johnr over 5 years ago in reply to FormerMember

Hi Lynda, good to see this update and day 12 is good going so onwards and upwards as they say and enjoy being back in your own bed

John

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are

moomy over 5 years ago in reply to johnr

Hi Lynda,

congratulations on escaping! Day 12 is pretty good! Yes, getting home is totally exhausting, but potter about as and when you feel able and you will improve!

i recommend circular walks, round the house to start with, then house and garden and then out from there, if circular you can cut back to rest easily if it all gets too shattering!

Lots of rest and sleeps as your body has been through more than a major operation! (After my mastectomy last year I slept 9+ hours a night plus an hour in the day too!)

hugs xxx

Moomy

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