So far so good...

Very tired, very Wobbly on my pins and still smelling of hospital, but I've had a great 24 hours at home, lying in front of the telly watching the cricket World Cup Final (very good game too), having the dryness massaged out of me by Julia and beginning to eat properly again.

It's going to be a long haul before I can get up the stairs without having to pull myself up the banisters without several pauses for breath and to give my legs a rest, but at least it's started well, I still feel OK and no health crises yet...

Keep Pulling

I'm sorry I've been keeping you on tenterhooks between blogs, but the hospital PC has been becoming less and less reliable and finally seemed to give up the effort altogether this afternoon.

However, it doesn't matter any more because I'm OUT!
After seven and a half weeks since admission, they've finally let me go.
I can't tell you how good it is to be home at last and I just hope it's not too temporary a reprieve from hospital food (difficult to tell whether my lunch today had already been eaten by someone else or not).

A few last minute hurdles yesterday and today, revolving around a CT scan I had yesterday to make sure my lymph glands were not swollen as a result of the latest virus they've detected in the blood.  But no, that was fine.  However, then there was a very frustrating last-minute hold-up because my potassium levels were very low and I had to have a six hour infusion all afternoon before they'd let me go.

But it's finally happened and I'm at home again.
And spring is in full swing.
In fact the pear tree sprang into blossom only today to welcome me home.
Surely a good omen.
And certainly a delight.

I have an enormous bag of drugs to make sure all my various viruses are balanced against each other and none gets control of the situation, and I will be going in to the Day Clinic on Monday and Wednesday next week.  But meanwhile, I have the weekend to enjoy at home.

Although I'm out this evening, I have to admit to being somewhat nervous about being dragged straight back in again for a crisis, but that's partly because I can't quite believe the first phase may be over and I'm so very keen not to have to go back.

Keep pulling

So please don't stop pulling on those ropes because I feel my head has only just appeared over the parapet of the well and I might well topple back in.

Now if you'll excuse me, I'll go and tackle the stairs again (amazing how feeble my body is after seven weeks lying about) and start on that monster bag of drugs.

Thank you all for all your wonderful support so far, verbal, mental, spiritual and all.

Crisis, what Crisis?

Apologies it's been such a long time since my last post, but I haven't been in good enough shape to turn on the PC.  However, all is now resolving.

The aforementioned back pain that you were all so sympathetic about in your comments moved around all over my body, changing its nature and making it difficult, no impossible, to move around without considerable discomfort in various places.  Then other more obvious symptoms of Graft versus Host Disease (GvHD), eg itchy body rash, made it clear that that was the underlying cause and it needed bringing under control prontissimo.  Cue a course of high dose steroids, and insertion of a cannula so that my drugs could be administered intravenously again instead of orally because I'd been bringing them back up again too frequently, which rather reduces their efficacy, as you can imagine.

The medical team was very efficient and decisive and Julia too has made sure that not only does she continue to come every single day (and for most of the day too regardless of her own tiredness, work crises etc) but also to ensure that she is always here for the important medical consultations, because I have been drifting about in my own little world for the last few days.  Three million cheers for Julia: RaaaaaaaaaaaY!!!

The upshot of all this is that I feel much better now, though very Feak and Weeble, my temp is normal and they're starting to wean me back onto oral drugs rather than IV, with the intention of throwing me back out onto the street by the end of the week.  I have to say I've given up on targets myself.  It's enough that I am where I am, I've been where I've been and let the future take care of itself.  So much easier to live like that.  It'll come when it's ready.

However, other very good news is that all the results of the Bone Marrow Test that I had ten days ago are now back and show that 95-98% of all my blood cells are donor cells (the benchmark they are looking for is 90% plus), so engraftment has definitely been successful, and there is zero sign of any CLL.  Still early days, but everything there looks positive.

Finally had visits from brother Andrew, sister Sally and son Ben, all very supportive and frequently emotional which felt very cathartic, restorative and healing.

Glimmers of Hope

Had a lovely afternoon on Saturday at the Cottage, sitting in deck chairs enjoying the spring sunshine, me wrapped up in several layers and a woolly hat, Julia making less use of her Arctic wardrobe.  No sickness either, unlike the previous week.  By such small, slow advances do I measure my life at the moment.

Another positive sign over the last few days is that my average temperature is gradually reducing.  They measure it six times a day.  There are a few 38+s still, but quite a few low 37s and today a 37 spot on.  I feel a bit better today too.

However, these things are never straightforward and I was kept awake for quite a bit of last night by a Sore Froat and a Sore Back, which I guess is finally protesting at all that time I spend lying down, though I try and vary the position as much as poss.

Still no useful results from any of the tests I've had, but I'm hoping that the temp will come under control before they start the test cycle all over again from the beginning!

Keep pulling, Team, and thank you all for your comments, emails and vibes.  They mean a lot to me.

Break for Freedom

Although I still feel continuously unwell, I am in a much better state than this time last week.

So we may try another Break for Freedom tomorrow, if only for the day.
Gotta keep trying.

St Patrick's Day

Shamrock

It's St P's Day today and I am to be treated to three tests, two on my heart, since infections can lurk undetected in the chambers of the heart.  One of these involves an outing to nearby St Hellier's hospital since they have a super-snazzy machine.  The others will take place here and are a hi-res CT scan also on my heart, and finally a Bone Marrow Biopsy this afternoon (not a very pleasant experience, as they drilll a big needle into the hip bone from behind.  Happily, getting the bone marrow itself is reasonably painless cos it's all anaesthetised, but they also take a sliver of bone which can't be anaesthetised.  Ouch!

Yesterday I felt a lot better in the middle of the day, but sadly it didn't last and I brought up my supper later.  Such setbacks can be very depressing.

Still no closer to identifying whatever infections are inhabiting my body unfortunately.
I have a constant high temp (peaking at 39 yesterday evening), feel permanently feverish and now have a bad case of The Shakes (another possible side-effect of cyclosporin apparently).

Hoping to be able to give you better news next time...

Hickman's gone

Miserable night last night.
Bad diarrhoea and even worse stomach cramps.

They decided to take out my Hickman line this morning, but no change yet.
But when my temperature spiked in the afternoon, I had to have blood taken from my arm instead.

Hoping for a better night, no spiking and no diarrhoea.