Tuesday, 14 October 2008

more waffle – a bit of confusion about remission

Tuesday 11th October

It’s very peculiar – I have been told I am in remission [how great is THAT?? whaahahahaha], and I am thrilled of course, but I think people may think I am not thrilled enough. They’re right - I am not jumping around the room quite yet.

It’s odd, I’m over the moon that there is no cancer to be found right now. My blood tests are great, CA 125 at 7 is brilliant [it’s actually gone down from 9 at the last test] – the norms are 0 – 35, so I am well within them. But I think that it will take me a long, long time to be at ease. Being betrayed by your own body takes a long time to recover from. Plus the fact that the CA 125 test is not definitive – it’s just a marker. But for us, it’s important. And the remission means ‘right now’ – it does not mean forever. So, making the best of the moment is good!! But hard in a way.

Sadly, you know in the back of your mind that the beastly thing can creep into another part of you if it wants to – lungs, liver, kidney – even your throat - you know that remission does not mean ‘cured’, and you know that it is out of your control. We are warned that any lump or bump could be serious [hello paranoia! jesu, my poor GP is in for a life of misery. More so the surgery’s general secretary, she is a total bitch anyway, so that’s something to look forward to!]. No matter what all those so called non medical ‘experts’ [hihihiihh] say [I am sure NONE of them have had cancer! experts? pah!!!], eating this and drinking that and ‘doing’ the other - they ‘may’ help, but at the end of the day it seems to be down to Sod’s Law. People who have never touched a cigarette in their lives get lung cancer – what’s that all about? People who have really healthy diets and lifestyles get it – what’s that all about? Personally I think it’s catch as catch can – you get cancer or you don’t and that’s that. Journalists need to spend some time in cancer wards – perhaps then they wouldn’t be so quick to publish all these silly ‘miracle’ cures. Perhaps then they would try to find people who really have survived, and publish TRUE STORIES as averse to ‘fairy tales’ that feed peoples imaginations instead of FACTS that actually help them. All they need to see is the children – perhaps that could stop even their voracious appetite for thrills without result. The children truly touch your heart – I deny anyone to see them and walk away without some kind of true feeling.

Andrew and I are in a strange state – thrilled obviously, and yet still afraid. Both of us. I went to turn the bed back last night and discovered a spot of blood on the sheet under Andrew’s pillow. This small thing made me cry – Andrew chews his fingers terribly when he’s stressed. I know that spot of blood is because of me. And it breaks my heart that I am putting him through this. I am sure I am not alone when I say that I feel guilty. Guilty for not being the woman he married any more, guilty for causing him so much stress and worry – guilty for being ugly [in my own mind – I know this – I know he doesn’t think so], for being in pain, for being cross for no reason, for a million things. And yet, saying that, I know I don’t really have to feel that way, as he is there for me every minute. It’s just a stupid state of mind that I need to get shot of. I am very lucky to have Andrew, and I feel so bad for all the women whose husbands are not as understanding and kind as mine.

The other thing about remission is that one worries about everyone thinking you are now ‘OK’...hmmm. Interesting thought. I am ‘ok’ as far as everyday things go, and as long as I am within my own environment – but I still get the dreaded ‘chemo’ tiredness, I still have those horrible moments of being unsure [I believe the expression is ‘my guts turn’] when I have to meet people I don’t know. No!! I do not want to do this. But I have to. Although actually when I have to it’s not as bad as I think it will be. Travel is a total nightmare, as one has to haul a suitcase and deal with a LOT of strangers – very stressful, and extremely exhausting.

The main problem being the hair. Hmm – at the moment of course I am starting to have hair again. Fantastico!! BUT – I have hated having short hair since I was about 12. The second problem is the facial hair – whaa! This is not normal!! Although according to Dr Hong, it is. So girls out there, why the hell didn’t you warn me?? Apparently it’s the norm for one’s facial hair to grow in rather MORE than usual if you have been on Taxol. Oh yay – one more humiliation to add to the rest – now I am growing a beard?? Not really, but the tiny facial hairs of yore are now a lot longer and thicker than usual. Luckily for me, mine are blonde, but it still makes me very self conscious. According to Dr Hong, this should start to disappear after about 6 months. AND according to my beautician, this is true and I should wait it out. It’s all very well having a great beautician but really, couldn’t she just lie??? She refuses to depilate my face until at least 6 months...bah.


  1. Where oh where do I begin...I am right there with you. Just this week I came down with a cold, I haven't had a cold in forever...yet all I could think about is "is this more cancer". so awful that we have to live our lives like this, I know it get's better...but it will never go away! Great to know other's on the same path and journey...I'll see you on the yellow brick road!

  2. I totally understand! People assume that once you finish chemo, you are "cured". In many cases, that is true! But their assumption of that can be upsetting, especially with sneaky cancers.


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