Friday, 30 May 2008

pain in the everything...and no Marmite!?

Friday 30th May

OMG! Woke up at 5.15 on Wednesday morning and I felt so energetic I had to leap [well, I say leap – a sort of staggering bound would be closer to the mark] out of bed and rush downstairs [careful now Tottering Thomas...] and start work. It was such a relief to wake up with hardly ANY pain in my joints! Yippee! This is all thanks to the fact that Andrew had the brainwave of simply taking Paracetamol – good job someone in this house has some sense. Either that or it finally left by itself – I shall know next time, because if it happens again, as I shall be straight to the painkillers. Then we’ll know if they worked or not – they definitely did take the edge off.

So the only thing to deal with now is the fatigue and the nausea. Bah – still taking the anti-nausea pills occasionally, but it’s not too bad. The back of my left hand is still painful, but apparently this is normal for the site of the cannula. When you have chemo the nurse wears gloves and an apron to bring it over to you - very Star Wars. They are very careful to avoid any direct contact with the drugs because they’re harmful if they get ON your skin – so I suppose it’s logical to expect that the site where the drugs go INTO your skin is going to be a bit battered. I am always glaring at the cannula to see if anything is creeping out – I have these hideous images of the stuff munching it’s way through the back of my hand...gah

Isn’t it amazing, we can invent nuclear bombs and thousands of hideous ways to hurt and maim people, but we haven’t invented a way of getting particular types of chemo into the human body that doesn’t involve a stabbing session. I’ve always been quite awed by diabetics, who have to inject themselves every single day – although I suppose at least the needle isn’t stuck into them for 8 hours at a time. And it’s not a poisonous substance. Even so. Pretty gruesome.

Today, not feeling so lively; had some super postcards from friends on their holidays etc. which made me remember how desperate I am for a holiday that doesn’t involve anything to do with computers, rain [which we have constantly at the moment] or chemo. This year is very long and I can’t wait for a bit of space where I can really relax. Seems strange to go all this time without a break when it’s a time when I most need one. What’s that all about then? Life is very odd.

I think the common perception of chemo [and this is what I thought before I had it] seems to be that ‘ok, your hair falls out and you get tired and sick, but not to worry, as your hair grows back and you’ll be fine’ [which is true], but outside of that, unless you actually go through it, it’s impossible to comprehend how gruelling it actually is. I was startled yesterday to realise that I am having the next session in just ten days!

Every single day is another mental, physical and emotional battle to get through, and I am constantly worrying. As each session appears to have a different side effect, I am concerned about being able to manage the resultant effects of the next three. And when you first see the oncologist, nobody actually mentions how much pain you may be in, and how exhausting that is in itself. When someone tells you you will be tired, you just DO NOT get it. At all. But you soon learn! I think a whack with a cricket bat to the knee or elbow might be comparable to the pain. Try it...ow!

How do people manage who are in constant pain? Perhaps they do and perhaps they don’t, but one things certain, it is knackering! When you open your eyes in the morning, the first thing you do is a 'body check' to see which bits are going to be nattering at you today – or not, as the case may be. So, I am very happy today that everything checked out as 'in good working order' apart from my hand, but that’s a minor thing compared to the last week or so. What a relief.

Bad news today - in fact, a disaster - we are running out of Marmite!! OMG! How is this possible?? See what I mean about chemo brain? No Marmite? It’s like saying no water! Shriek!


  1. I had a chest port (power port) installed for my chemo. It is beneath the muscle near my collarbone - and they use that for chemo. No 'sci fi' outfits or precautions.
    I didn't think that I would like it - but it sure has come in handy! No painful cannulas have to be inserted.
    But - it is another scar! :)

    You are doing great! You'll be done before you know it!

    Now I have to google "marmite" to see what that is.

  2. wow - that was wierd! I was just commenting on YOUR blog and your comment came in! ;o]

    Marmite is very English - I think the rest of the world hates it heh heh. I LOVE it!


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