Another trip on the roller coaster

Been in 20 days now. White blood count going up but neutrophils stubbornly flat at zero. Feeling lethargic despite unit of blood. I was HB 81 . hard to keep motivated. Room quite warm and i just want to sleep. Could be worse.

Tessa

Awwww, Tessa, thinking of you. Pesky neuts, eh? But at least white count is up, hopefully not too high suggesting infection? 
Honestly, sleep is sometimes excellent medicine; especially if you’re getting disturbed nights from regular obs? 

Hugs xxx

First frost this morning up in Inverness so had to clear the car windscreen.

'Could be worse'...... was one of my regular thoughts when I looked round the wards when I had little walks.

Knuckling down for the long run is the only way to go - keep your eye on the greater good in all this, yes, hard at this time but you will get through this........ ((hugs))

Frost in Southampton too they tell me. You were right moomy had temp spike in afternoon and iv antibiotics. Long sweaty sleep.

Tessa

Hi Tessa, 

The sweaty sleeps is something I’ve not missed and touch wood, so far hasn’t returned. Just taken the dog out in Exmouth and although there is no frost it’s absolutely freezing you’re probably best wrapped up. 

I was in hospital last week speaking to a guy with AML who had had an Allo 2 years ago but had relapsed so they’ve now decided to do a Haplo from his son. He was going through the conditioning therapy and was in good spirits and said they were very confident it would clear it again. He’s the first I’ve met in person who will be going through it twice!!

Didn’t want to add anything to what the guys have said but thought I would just say good luck. I’ve struggled the past few weeks so know how frustrating this can be so again good luck. 

Regards

Mark x

((hugs)) Tessa.

I don't know if have said before, but two Allo SCTs was always the long term plan for me.

The first was a shot in the dark and if it worked I would have little or know post treatment side effects or issues............ yes, to the no side effects but it did not work so on to the second part of the plan.

Hang in there Tessa x

Still rather wobbly. My nearest relatives in the right age group would half nephews or their children. But hospital  told me they have idetified a donor. Must have common genes.

Tessa

I do like this Tessa xx

That sounds promising, Tessa.....

hang on in there, 

hugs xxx

Sorry to hear you are still there, Tessa, but good news about a donor. 

Keep on keeping on and you'll get there. 

My neuts started to creep up with FlagIDA (no G!) on Day 16, but I was told that was very early.  With my second lot of chemo, there was no movement at all until Day 46 and then it crept up at snail's pace. 

Thinking of you and sending hugs. xxx