Friday, October 19, 2012

I'm now going to ignore...

I'm now going to ignore my blood counts! Well at least stop trying to put any meaning to them.
Today my haemoglobin was 102, only down slightly on the 109 from Wednesday and that's without a transfusion. So who knows?

Platelets hadn't bottomed out completely either.
Lets see if I can get through this long weekend without too much drama :)
Shall pop into the hospital on Sunday and grab a unit of platelets just to be safe.

Codeine worked well on the left flank pain too. Once the pain went the muscle stopped spasming and now doesn't hurt at all.  :)

I'm really hoping for some fine weather this weekend so I can take my Evo 6.5 TME out for a drive.
It's been a couple of months since I last got to have a run in it and since then it's had quite a few improvements made to it.

Last weekend my good friend Michal completely groomed and waxed it for me. It shines like a new penny :)  Last night he sent me a text saying he wanted to put another coat of wax on and would pop over on saturday morning.

He just loves grooming nice cars. (His 1968 Camaro is groomed to show condition.)
That's lucky for me because I couldn't even work the hose these days!  ;)

..Ron

Wednesday, October 17, 2012

Hmmm

My counts had been slightly improved for a couple of weeks now and there was some hope that my bone marrow might be improving. Then out of the blue on Monday we have appalling counts of 1 for platelets and 90 for hemoglobin.

The bubble burst. It explains why I was so fatigued over the weekend.
Then yesterday Sarah and I had a meeting with a doctor and a nurse from the hospice.
That really was a sobering discussion. The only good thing being that they said I wasn't in need of any hands on help at this stage, mainly advice etc.

Then today we had a follow up meeting with my haematologist Alwyn D'Souza.
We both expected very bad news. When we saw him three weeks ago he said it was probably time to give up. I sent him away with instructions to look outside the square for other drugs and to also investigate bendamustine. I didn't really expect much and Sarah and I both felt that he would have used the time in between to soften the blow and today would be a repeat of last time..IE: give up.

But that wasn't the case. He'd been on holiday most of the time in between and done considerable research in his own time. Today he discussed several chemotherapy options. Even going into depth on how each one worked at a molecular level. I was very impressed.

So once again we have a plan, several in fact. Next week he will discuss with his colleagues the various options and see what the consensus is.

Considering both Sarah and I were dreading today's meeting, we both left feeling very confidant.

Don't get me wrong, there is no expectation of long term remission, but we just might find a palliative treatment that offers a much improved quality of life over what I have now, and possibly less or no dependency on constant blood transfusions.  We live in hope.

CT scan results don't show a lot, some nodes bigger, some smaller. Nothing new, so I'm happy about that.

I've pulled a muscle in my left flank from coughing, the pain is incredible! I'm trying to find the right pain killer from my not inconsiderable stock that might help. I'll try codeine tonight.

This weekend my daughter Ashleigh is getting married to her partner Michael Kussrow in Brisbane.
I'm unable to attend due to my poor health so they are coming here next week for their honeymoon and to catch up. I'm really looking forward to it.

...Ron