How am I ?

That seems to be the first question most people ask me these days.
The simplest answer is to just say "Ish".
If I'm feeling like sharing I'll say "relative to last week?" "better/worse"

There's just no way I can describe how I feel some days without going into information that people just don't to hear or deal with. Most just want me to say "good thanks" so they can get on to what it is they want to ask or talk about. Family/close friends excluded.

Tomorrow I receive my third cycle of Vinblastine. I have no idea if it's working. There's been no improvement in any area that I can see. In fact I've started having night sweats again after a break of over four years.
They are not nice and I soak the bed sheets like I've spilt a jug of water in the bed.
I don't sweat from my back much anymore since having radiation in 2008. However I sweat from my arms, legs and chest. When I woke this morning drenched, I lay there watching the beads of sweat form on my arms. Nothing I can do but dry off and put on a dry tee-shirt to isolate me from the cold wet sheets.

I'm taking GCSF growth factor to try and get my white cells back into the normal range as they have been depleted by the chemo and leave me open to infection. Side effects from that include back, muscle and joint pain.
Unfortunately a side effect of the chemo is also lower back pain. :(

My breathing swings from Okish, and then bad to worse. Sometimes in the same hour.
Fatigue levels are very high. I get fatigued and start to cough if I stand up and move around the house. I can only walk very short distances. If I sit quietly in a car for instance, I can go without my oxygen for about 2 hours without too much distress. However it's always nice to put it back on for a small increase in well-being.

I've been bleeding more lately, my arms are a mess. Twice Sarah has bumped into me in the slightest way and I've been left with a 20mm diameter blood blister. I bleed into my stomach too, from where or how we have no idea. All I can do is try and keep my platelet counts up.

Thing is I'm still here to complain about it. For that I'm grateful. I just wish that one of these days I'll get some good news, no matter how small so we can celebrate and feel like it's all been worth the suffering.

Maybe tomorrow's counts will show a improvement.. forever hopeful  :)

Vinblastine

Just received my first cycle of Vinblastine chemotherapy today. Would be so good if this one works to remove the cancer from my bone marrow so i can start making my own blood again. At least we are trying new things, better than the "time to give up" suggestion I got last month!

There was a new Doctor covering on the day ward today and she approached me while I was having my chemo and challenged me over my request to have a unit of blood today along with a unit of platelets. This is a situation that arises nearly every time there's a new doctor on the day ward that does not know me or my situation.

I was quite annoyed at having to explain yet again why I like to try and keep my counts as high as possible and she certainly gave the impression that she was going to deny my request.

Then she pulls out a note from Paula, the doctor that is usually covering the day ward and tells me that it says that "Ron can decide on his own blood requirements". I growled at her and asked why she put me in a situation of having to justify my decisions when all the other doctors give me a free rein.
"Oh I just wanted to get to know you" she replied. "There are other ways" I said "than making me stress over something that wasn't even an issue"!
Doctors.. why do I have to bang heads every time I meet a new one??  Rant over.

So far the chemo hasn't made me nauseous, I'm not expecting it to either.
I'll update next week.

By all accounts my daughter Ashleigh and husband Michael are having a great honeymoon travelling around Taupo, Napier and everywhere in between. I look forward to seeing them again on Thursday when they return.

...Ron 

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

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

Not a lot happening

Just a quick update..

I got through the week with just the one unit of blood given today. That's a big improvement on 3-4 units I used to require each week. The pattern seems to be one unit on a Friday and that will see me right through for seven days.

Platelets aren't so spectacular but are improved. I now have one unit on each of the three visits, Monday, Wednesday and Friday. My counts are usually around the 3-4 figure and I have not had a bleeding event in several weeks.
So some improvement there but not anything to get too excited about.

I've split my prednisone dose to 10mg morning and 5mg at night. It makes for a far better night's sleep but my body complains bitterly about the day time reduction with aches and pains. I'm hoping it will adjust over the next week or so.

Breathing has improved but I still have the odd period of breathlessness.

That's all for now  :)   ..Ron