The Bald Woman's Blog: Part 30
The benefits of Jamie Oliver's banana porridge... and the horrors of shadowy nightmares
Wednesday, October 1:
Well, this starts breast awareness month and everyone who is undergoing or has undergone any kind of breast cancer treatment will be more than aware. Perhaps, like me, they are wondering how on earth all this happened and why.
Would it have been any different if we had checked more, been more aware? Ate differently, had never smoked or drunk or breast-fed or not? It's a ridiculous, endless list and there is nothing that anyone can blame themselves about, but cancer is a real bummer, whichever way you look at it.
It is one of the reasons I started this diary. To make myself understand more than anything and to sort out the confusion in my head, to relieve the "congestion" of questions and for some relief from the disease itself – to try to see all round rather than one-sided.
It then became a way of letting the many friends who have diligently cared about me and asked after me exactly how I was doing, without a repeat performance several times each evening. I would write the diary, print it out and send it round. Everyone was happy.
It occurred to me that there would be other people who might want to know what was in store – or even what other people went through – it's all very personal and this is how this "blog" was born. It's been a great comfort to me at a time when I am very vulnerable, acutely emotional and hovering "in the in-between" and "what ifs".
I'm not sure if anyone really wants to know what is to come, but if it is never written down, even from a personal point of view, then no-one will ever know. I can say, at this point in my treatment I have changed. I'm not sure quite where or how yet, but it's a definite "slip" somewhere.
I couldn't sleep last night and suffered from my own silliness of wanting to eat just before bed, thus there was no digestion process at all. The chemo gives me weird and not very wonderful feelings, too, and these don't help.
This time I have managed it a whole lot better and although the horrible "naggers" are with me all the time for the first three days, I haven't been sick this time, just felt it. Didn't, so far, get mouth ulcers and managed to stop myself eating the entire stock of the fridge in one go.
Websites I have found useful:
Breast Cancer Care
Cancerhelp.org (the patient information website of Cancer Research UK)
Netdoctor.co.uk
Scarf Studio (scarfs and bandanas)
Also I bought some nice healthy snacks instead of Marmite, crisps and anything sweet and fruity. This time it was dried cranberries, prunes (bit dodgy!) and plenty of Jamie Oliver's banana porridge, so filling and delicious and easy to eat.
Today my mouth is still very dry but I have some "sucky" sweets to help out – antiseptic ones! There, I've done all I can in that department. I haven't used the paint stripper mouthwash again – very painful! The secret is to keep brushing gently and rinsing and never sleep without doing that first – those ulcers were terrible, a lesson hard learned!
The one thing I cannot seem to shake, and it was the same last time, is the terrible "mental" strain it seems to have on whatever brain gets left after the chemo. I was trying to describe it to myself last night when I couldn't sleep and was obviously keeping Alan awake thrashing around – mind you there was one point when he was adjusting my pillow so he wasn't resting well, either.
He has taken this week off to try to help, although as I am writing he is in fact in the guitar shop – but we won't mention that – just yet, anyway!
When I come out from chemo I always feel, jittery, jumpy and cranky. The wait to be picked up, even if only five minutes, seems endless and I'm hopping about getting cross for no reason. After about three hours a terrible terrible tiredness comes over me and there is no choice but to sleep. A "go away and leave me alone" kind of thing.
Usually, the next day, I'm tired but up and about and pacing myself to do small jobs, but all the time is this horrible unsettled feeling. Functioning, but not really.
Poor Alan can do no right! I sit in the passenger seat and tell him how to drive –"mind that corner", "look that space there – no that one". "Watch out, why did you do that" and so on.
He is a member of the Institute Of Advanced Motorists, for goodness sake, and drives cars for a living, among other things, but he's been very good about it all. I have been the Heather Mills-McCartney in his side! That's why he's allowed in the guitar shop today!
Night-times are the very worst. I am absolutely exhausted by the evenings for the first three days and can usually be found on the sofa, maybe bed, but that's difficult in our house.
When bed is finally allowed, after cats, dogs, child etc I can drop off immediately, but about an hour later I'm awake. It's usually the same dreams. They are always horrid disaster things that are never definite. Sort of "shadows" – nightmare type things. Shapes in the dark you can't quite see, that never quite gets you but is always there.
In the background are chinks of light – slits really, that you can see through, where everything looks safe but unattainable. In the dark it is warm but "slippery" and I can only describe it this way. It is like swimming in a sea of jelly like slime, far too deep to put your feet down so you have to keep going, you must find the edge so you can get out.
It is exhausting trying to find the edge in the dark and when you do it is high above your head. This means that it is almost impossible to pull yourself out of it as you have no strength left by then and it is far too slippery to hold on to anyway.
You dare not let go in case you go under where it is very dark indeed and feel if you do that will be the end of you! These dreams are frequent, several times in one night, the result is that I dare not sleep for too long – just in case, and wake up with a terrible start, usually, very hot and dry mouthed.
This starts off the next cycle of wee, drink, wee, try to sleep etc etc. Eventually, though, this effect does go and by tomorrow night I will be able to sleep more normally, at least as one can under these circumstances, but I wanted to write this down as, in all things there are patches that are just not good at all and for me, this is one of them.
I really do not cope well with this "mental" thing and maybe it doesn't happen to everyone – I really hope it doesn't! For me, it's back to my childhood nightmares of strange faces peering in at me, dark scary pits that you cannot see the bottom of and that whole "out of control" situation again – this time with no Mum to put it all to rights!
This morning I have had the worst time so far. I know why. Alan is home trying to help me over chemo week. It makes me weak, tetchy, snappy, rude, slightly depressed, but also it makes me feel that everything is out of kilter.
Having Alan home is even more out of kilter and this morning, as Laura does not go into college on a Wednesday we thought we might have a small lie-in. It was, as they say, so the wrong decision! I need to eat fairly regularly, just small amounts that keep me from feeling sick and weak, especially in the first few days after the chemo, so the big mistake this morning was leaving it all far far too late to have breakfast.
My blood sugar had dropped to suicidal levels and nothing seemed right. I was fed up with the scarves I have to wear, jittery and bugged by the fact that I couldn't get the pc to work properly and annoyed that Alan hadn't got out of bed earlier and at least brought me some tea and something to eat to stop this.
In fact I had to get up and make him tea! Now, for some reason this really got to me and in the end there was a volcanic explosion that had nothing to do with methane gas! I shouted, screamed and eventually cried with sheer frustration, the sheer unfairness of life and well, just everything.
I did say it might come home to roost with a lot of flapping and today it did! I'm still twitchy about everything and best left alone today – I have warned everyone. I did say I would be honest with this diary and this is basic honesty today. It stinks!
Part 31 next week
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Weather for Luton
Friday 10 February 2012
Today
Sunny spells
Temperature: -6 C to 1 C
Wind Speed: 13 mph
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Tomorrow
Sunny spells
Temperature: -5 C to -1 C
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