Answers?

Another week, another set of problems. The trouble is this time I'm not sure I want the answers. Your mood hasn't improved very much but now that comes with other problems. You are very unsteady on your feet, it's almost as if you are drunk.

We mention it to the oncologist, or actually I do and get shouted at by you for doing so. You feel as though I have betrayed you by saying these things to the doctor, I hope you forgive me.

The oncologist is as concerned as me, I think he could see the change in you too, they want to send you for a brain scan as it could reveal the answers, answers I'm not sure I want to know.

You also can't drive, you're frustrated and I guess you feel like your last little bit of independence has gone from you.

So now it's more waiting, waiting for the scan, waiting for results. I'm not sure it will mean if the cancer has spread to your brain, I was too afraid to ask.

Is this a normal way to feel?

I've forgotten what normal is, I wonder what we talked about before this? I wonder what life was before this, I have forgotten.

Limitations

This week has been a lesson on limitations and I have reached mine. Let me explain.

I love the very essence of you and everything you stand for, you're like a cooling breeze through a barmy hot day. No matter what happens in life, you stay calm, never a raised voice, never a rant, nothing, just you, breezing through it all.

This is the essence of you and who you are, the calming influence. It's that very bit of you that I fell in love with.

I've had to remind myself of this fact all week because that bit of you I love has gone, and I just hope it's not gone forever. It might even be fair to say you appear to have had a complete personality transplant and it's terrifying. I've never known you get cross but this week everything has made you mad, especially me it seems. I'm walking on eggshells.

You've gone out this evening with friends to watch a rugby game and I'm so glad to have some peace, It seems I do have limitations, even though I think I can deal with everything, actually it's more like I can deal with everything as long as you are you.

Right now you're not and I could scream and shout at you but I try not to.

Is this a normal way to feel?

Good news, bad news

Chemo was gruelling again this week but you coped well as you always do. You have horrendous mouth ulcers and are fed up of being tired all the time but you've muddled along and made the most of it.

Now it's over again, for a couple of weeks this time and you have more colour in your face, your appetite is returning and you're a little less tired, I wonder if it's just me and because the chemo has made you so ill but you look better than ever. Better than you've looked for a year maybe, before this disease took over our lives.

Then the cough starts, I have never known anyone cough so much. By Tuesday you are in agony, something hurts in your chest and you can hardly move. Maybe I was imagining you feeling better because suddenly you seem more ill than ever. I call the doctor.

You've broken a rib coughing, if it wasn't so sad and painful I'd laugh!

It's not the best news but there is good news, bad news. Apart from that the doctor says you look well, listens to your chest and says your lungs seem to be working much better. He's not an oncologist he tells us, but he thinks the chemo is working.

I joke "It's only a broken rib, stop grumbling, you could have cancer for goodness sake". You laugh, it hurts but we do have something to smile about, a glimmer of hope, for now.

It really is a rollercoaster and I'm guessing this is a normal way to feel.

Tomorrow

When you're a child, all that matters is tomorrow. Tomorrow I start school, tomorrow it's the school play, tomorrow it's Christmas, tomorrow I'm going to a party, tomorrow I go up to big school, tomorrow I'm going to see a band, tomorrow I'm going to the pictures with my boyfriend, tomorrow it's my birthday. That's the stages the children are in.

Now we find ourselves living in the same way. Let's have a break before we go for the results. Our friends made some dreams come true before the chemo started, let's have a couple of days away between chemo sessions, let's have a weekend with friends.

We are like children again, living for the next thing and not looking beyond. Is that a bad thing? probably not and we'll stick with it for now.

Acting like a child, not a bad thing surely.

Is this a normal way to feel?

Chemotherapy

And so the hell on earth that is chemotherapy begins. No matter how much people who have had experience tried to prepare us for how awful it was going to be, nothing could have prepared us for this. How can something that is designed to make you better, make you so very, very ill.

Friday was chemo day and you were superb, I thought you were one of the lucky ones. By Saturday night you were feeling a little ill, Sunday you felt fatigued all day and by Monday you couldn't get out of bed.

For all we had prepared for how ill you would feel, to see you with a mouthful of ulcers, unable to eat, with no energy for anything is horrendous. It certainly makes you ponder on life, quality or quantity? We already know it isn't a cure and what's the use of having longer to spend it like this.

What I wasn't prepared for was how emotionally fraught you would feel, I guess it's easy to be philisophical about dying when you feel so alive, when you're feeling half dead it's a little more difficult. It's so hard to keep you positive and yesterday you sobbed, I've never seen you like that but can totally understand how you feel. I sobbed too, but I waited until I had gone out and sobbed in the car in a supermarket carpark.

All of these feelings after just one session, Friday it starts again.

Is this a normal way to feel?

Living the Dream

I've been neglecting the blog a little, maybe that means we're coping better. I doubt it, I think it just means we have been coming to terms with things.

I still can't get over how brave you are, how accepting. I still feel so cheated and you do too, it's so difficult.

But I refuse to talk about you as if you are dying, I can't think of you that way when you are so very much alive and that's why it's time to start living the dream. That's why I haven't been writing, we've been having fun living.

A family holiday last weekend, making memories and doing things we've been putting off for various reasons. It was so great to see you smile and laugh, even though you found it tiring.

There will be time for tears.. Later. Now is not the time, now is the time for living, having fun and living like there's no tomorrow.

Is this a normal way to feel? I sure hope so!