Tuesday, February 15, 2011

"Stop the world I wanna get off!"

I got a call on my cell while I was meandering along the road to catch the bus into the hospital today. It was the Surgical Outpatients department saying they'd received a referral from my Hematologist and had an appointment for me at 10.30am this Friday. Yes, you heard right. In just two days.

I was a bit surprised since I hadn't actually told them I'd decided to go ahead with it yet, but my hematologist is the proactive sort and is obviously keen to get the ball rolling. Besides if I'd decided to go the other route it would have been easy enough to cancel it.

I dragged a friend along to my appointment since hubby couldn't get the time off work and got in there to discover my doctor was away but that she'd asked someone else to meet with me. Her replacement was lovely and answered all my crazy questions.

My platelets have dropped since Monday (when they were 31) down to 18 yesterday. So, as before, I'm to go for another bloodtest on Monday unless I deteriorate in the meantime, in which case, I'm to go straight into the ward.

Unfortunately, if my history is anything to go by, now that my platelets have slumped this low it's unlikely they'll come up again by themselves. I'll be monitoring myself closely over the next few days for signs that things have deteriorated further. However, because of my bad reaction to the Immugam transfusion last week they're now reluctant to give more unless they have to. As the doctor said, "If we can avoid putting you though that again, we will."

I had my suspicions yesterday that my platelets were dropping again. The site of my bloodtest was still seeping when I went to take the plaster off five hours after the test! And then this morning I noticed a few new tiny red petechiae on my upper right arm and shoulder. So I wasn't really surprised to hear the low result.

Of course if I can't maintain my platelets at the moment on the highest dose of Prednisone they can give me then we have other problems.

A surgeon isn't going to want to operate on someone with a low platelet count. After all, they don't want me to bleed out all on the table... that would be very inconvenient!

Ideally they'd like my platelets to be 80+. It's unlikely they'll do it if I'm sitting under 50. And that feels like miles from where I am now!

So how am I aside from all this? I'm knackered!

I've been very stoic and practical though out the process of making the decision to have the surgery, but the exhaustion is getting to me now and undermining my calm. One of the draw backs of being on a large dose of Prednisone is that no matter how physically, mentally and emotionally exhausted I am my brain won't shut up and let me sleep.

I'm so tired right now all I want to do is curl up in a corner and cry. Let life carry on without me, I don't want to know about it anymore!

It sucks, but that's not the way life works...

I'm trying not to think too hard about the fact that I'm working Friday through Monday. I can't afford to take any time off and we're going to be working short-staffed this weekend anyway. So unless my platelets crash though the floor and I've no choice but to go into hospital, I'm be soldiering on.


  1. I so understand you wanting to curl up in a corner and cry. I'd want to do that too!
    If you're feeling that low, and you have every reason to, is there any way you can get the weekend off? It worries me that you are so sick and still boxing on. There comes a time when your health and well being have to come before monetary considerations.

  2. What Sue said.

    In any case take care, and know there are plenty of people whose best wishes you have.

  3. Hi Pen,

    Sorry to hear about your health situation. Sometimes it’s hard to know what to say when someone is feeling so poorly, but you just keep that chin up and concentrate on your own personal needs for now. The rest will fall into place. Easier said than done, I know.

    Take care and all the best. Hugs. xo

  4. I completely feel your pain. Been on the horrendous drug for almost four years now, while trying to keep my basketball career afloat. More than physically, the psychological effects are unforgiving. A lot of people don't really understand how serious it is. Most of the time, the average person will say to keep a positive attitude, try to focus on the good in life, pray, all that. But the difficulty in that is the equivalent of walking against a windstorm with a parachute on. At the same time, I came to realize that there is a multitude of folks living under much harder circumstances. I pray things get better for you. I'm sure they will! Keep the faith.