Saturday, 31 May 2008

Marmite – an explanation

Saturday 31st May

For those of you who aren’t British and are reading this, a quick word about Marmite. We Brits carry Marmite to the ends of the earth – it is a quintessentially British thing. I have yet to meet anyone not from the UK who actually likes it. My friend in Portugal made the mistake of tasting it by sticking her finger into the jar and eating it – she then spent the next 10 minutes over the sink, retching, spitting and cursing me – much to my amusement – I did WARN her!

It’s a VERY strong tasting yeast extract. It looks black in the jar but it’s really dark brown. It can be used in gravies and cooking. Normal people eat it sparingly on bread or toast, maybe with cheese or tomatoes – maniacs like my Dad slather it on a centimetre thick and gobble it up with gusto! It comes in a sturdy glass jar, in three sizes – small, medium and BIG. There is a plastic squeezy version on the market now, which is really quite disgraceful. Plastic?? Squeezy? Good grief. How uncouth. I don’t know what came over them actually.

My Dad took a big jar to Saudi a few weeks back, and he’s running out already. I usually have a medium jar and that lasts for about a year – and the jars are magic! It’s almost impossible to run out – there always seems to be ‘just enough’ left to have a bit on your toast – hence my shock and horror to discover our jar is almost empty. I’ve had a jar in Portugal for years, as I go there so often [usually anyway], and the other great thing about Marmite is that no matter what it may say about expiry dates, it’s always edible.

And it’s one of the few things that can beat the ‘chemo mouth’! Gotta be a good thing right?

The only comparable thing is probably Vegemite in Oz, and Bovril [although I can’t stand Bovril OR Vegemite – not the same at all!]. Marmite is the best![this link will take you to the web site for your amusement]

Short note on today; I feel really sick! Can’t think why, as I am supposed to be in the ‘getting back to normal’ stage. Thank heavens it’s the weekend, so I can droop about the place and not worry about it. Will have to really scrape the marmite jar for some toast today! ;o]

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!

Tuesday, 27 May 2008

planned hair style...maybe not orange?

further on being a [not quite] slap head

Tuesday 27th May

Back to the hair [yes, yes, I know, but it’s not ‘just hair’ is it?]

Well. So ideally, it should do one thing or the other right? Either fall out, or NOT fall out. But no, all this stuff about all your hair falling out? Ha – it is far less dignified than that – MOST of it falls out.

You’ll remember that it originally literally fell out in great clumps, then that tapered off to falling out bit by bit. Well, eventually it stops falling out, and grows again! Eek! What is that all about? But probably only one hair in 50 is there, so I have this extremely weird patchy head – sort of like a moth eaten animal skin rug that you find in your attic that makes you scream when you realise what it is.

Stupid stuff – so now I have a grade 2 for the moment – I shaved it down again with Andrew’s trusty beard trimmer, as it’s only growing on the top, and nothing on the sides. So when it grows back I’d look like a woodpecker...a curly haired woodpecker. Superb! At least at that point I’ll be in a good mood again, as the chemo will be finished – apparently it takes about 3 months for your hair to grow back in to any reasonable length – and that just means being able to have it shaped – not that it’ll be anything like normal. I am still missing my long hair – I don’t think I’ll be doing much cutting for a bit once it does come back! I shall adopt the Fraggle effect - have it going in all directions and refuse to brush it. Or cut it.

Interesting factoid: you can colour your hair as soon as it starts to grow back – according to Phillip Kingsley [one of the top trichologist in the country] what happens on the outside of your scalp has nothing to do with the inside of your scalp where the actual hair starts to grow, and the roots are.

Thank goodness for that then!

useful bits about hair...cheers Trevor!

VideoJug: Hair Loss Through Chemotherapy

aaargh – my beastly joints!

Tuesday 27th May

Oof – since last Tuesday’s chemo I have had joint pain more or less constantly. And here I was hoping it’d forgotten to arrive. Keyboard is fun when you’re using hands that feel like they’re joined to broken wrists! I need to ask Dr Hong about this when I see her next time, although the other girls I talk to have had the same thing. It’s quite debilitating. Hands and knees in particular. Last time it wore off after a few days, but this time it seems it’s here for the duration – I hobble down the stairs like an 80 year old and long for a proper house where everything is on ONE level. Perhaps I’ll pitch a tent in the garden...although with our weather at the moment I’d be better off with a narrow boat.

It has abated day by day, but won’t go away completely. Pain killers don’t seem to touch it, and a disturbing thing is that the site of the surgery is painful as well. Weird. Eating Paracetamol to see if that helps, although I am really loath to put even more rubbish in my system, which is already overloaded with poisonous substances – I do chuckle when I see adverts for Organic for the back of my hand – it still feels like someone whacked it with a brick.

But this morning the taste in my mouth is almost normal and I feel more cheerful. It’s frustrating to feel constantly annoyed at everything and not quite know why. I suppose I can blame the chemo – might as well - I refuse be responsible! In fact it would be rather nice not to have ANY responsibilities whatsoever for the next few months.

It’s amazing how many things supposedly need to be done immediately; ‘sign this and send it back NOW or get fined’ [immediately forgotten and consigned to a pile], and ‘stop the payment on that’ [also forgotten in an instant], ‘post this to so-and-so’ [oops...when was that eh?], remember to do this, that or the other...a never ending litany of tiresome things that I could really do without.

When you’re tired out it seems the tasks never end; pre-chemo I would pile in, get everything done pronto, then sit back and admire how industrious I’d been. But at the moment, all industry is painstaking and everything takes twice as long. And once I reach the end, I’m right back at the beginning again. And that’s usually after stopping in the middle for a break. The only things that I see definitive progress with are work and the garden [which is now a swamp, so no luck there this weekend!]. But cleaning and shopping and run of the mill stuff just keep on going on and on...bah. It’s like water torture...Bring on a battalion of servants and a secretary please. Oh imagine! I could just sleep for a week...

But one useful thing about having housework etc. is that it helps me to get the better of the beastly joint pains to an extent – I now save the bed making and other things for when my joints get really painful, then I go and do something, and the physical activity relieves it for a while. So really everything is useful in the end! And it is quite satisfying to achieve things other than on the pc. Starting work at the crack of dawn by this point, as it’s when I feel most energetic. Today, three more sessions of chemo seems a lot!

Friday, 23 May 2008

3 days later and still grumbling a bit...

Friday 23rd May

Although it’s three days after the chemo, I am still feeling a bit nauseated by most things and pretty cross for some reason – my mouth tastes like I’ve been busy siphoning petrol for a week, I can’t stand wine and most food tastes dreadful. Usually Andrew will make me a poached egg on toast for breakfast [this is always a treat even though he’s been doing it for years!], and the very thought of it turns my stomach. Yuck – egg...NOOOO!

The weather is colluding and has gone totally rubbish just in time for the Bank Holiday weekend, and some fool tried to blow up the shopping centre in Exeter.

But one thing I forgot to mention about the last session was the result of my CA 125 test, which is now down to 9! Fantastic, still only an ‘indicator’ that things are going well, but even so, it’s a nice positive thought that the chemo is working. My bloods were ok too, and my kidneys appear to be keeping up the good work despite all this abuse. I must be drinking more water than I ever have in my life, so that may be helping.

Date: CA-125
28/02/08 1149 [before the initial surgery]
25/03/08 161 [before the first session of chemo]
24/04/08 30 [before the 2nd session of chemo]

19/05/08 09 [before this 3rd session of chemo]

Yesterday I was exhausted and just propped myself up in front of the pc minding my own business working away, and even the phone seemed a bit too heavy to lift up and as for speaking into it? Well, no thanks.

I am now living on ice lollies [marvellous – they freeze your mouth so you can’t taste ANYTHING] and Lucosade – dreadful fizzy stuff, but also another thing that seems to obliterate chemo mouth. Have actually managed to get some sleep mind you, so it’s not all bad. A bit of gardening over the weekend will help – always good to do something that doesn’t involve sitting down!

Thursday, 22 May 2008

three down, three to go

Tuesday 20th May

Tuesday morning, off again for the 8.15am appointment at the chemo ward. You never actually go in on time by the way, but at least if you are there for a ‘long chemo’ you do get started early, as they close at 6.00 and to fit in 8 hours of chemo plus odd delays where it’s not ‘made up’ yet etc. must be frustrating for the nurses as well as for me. Arrive to the smell of toast and coffee – have a coffee while you wait, thanks to the Force ladies.

Into the ‘Chair of Torture’ – I don’t know who designed those chairs but I would really like that person to have to sit in one themselves for 8 hours or so – I think they might be rushing straight back to the drawing board, standing up to do the redesign! They’re great in that you can put the foot rest up etc, rather like the old Lazee-Boy style. But they’re hard as rock! And blue plastic? Eww. I suppose it’s easy to clean? But making it hard as stone is no help to cleaning, so may that designer have many torturous seats to sit on in his/her life.

For some reason this time, the nurse that I formerly didn’t particularly want to have [he seemed MILES away and forgot a few things the first time, which made me nervous] has turned into a New Man and was brilliant this time. Maybe he was training? Suddenly he is bursting with confidence and right on the ball. Good for him – and for me!

He went through the questions about what side effects I had last time, and I told him all of them but that the worst thing for me at the moment is the insomnia. Not that I usually need a lot of sleep, but I need more than 1 hour at a time, constantly waking up, every hour on the hour, particularly now. Can’t work out if it’s sub-conscious anxiety about work and other stuff, or the menopause or the chemo.

He decided to get the Ward Doctor to come and talk to me about some sleeping tablets. The Doctor arrived, and was most miffed once he noted that I wasn’t foaming at the mouth quite then – he had a go at the nurse in front of all the ward, telling him ‘I was actually on a ward you know, and I thought it was...’ – he was obviously about to say either ‘important', or 'urgent’ but wisely clamped his mouth shut, upon noticing that EVERYONE was looking at him. Rude and arrogant. So that was fun. NOT. The poor chemo nurse was a bit embarrassed, although why I can’t imagine, as he wasn’t the one who was being rude. A while later, Doctor I-Am-Extremely-Important-And-Don’t-You-Forget-It arrives back. He has either a South African or Zim accent – not quite sure, but he uses the phrase ‘quickly quickly’, which reminds me of SA. So, he arrives at my feet [which were handily sticking up, enabling me to look down my nose at him], and says: ‘Ok, I’m here, quickly’. Ha!!

Asked him if he could ‘quickly’ tell me if, in the 5 minutes he would need to spend with me, he would mind prescribing something that would help me sleep for the next 5 nights. If that wasn’t too much trouble, as obviously he is a very busy man, unlike the rest of us lazy buggers, lolling about having fun being nuked. Grr. I really felt like being rude, but decided you never know what’s happening in other people’s days, so I restrained myself! Plus he could poison me heh heh.

He asked me how I felt about Temazepam, and we got into a slight argument about that, as I was under the impression that it’s a horrible drug, and an anti-depressant. But he said it isn’t and I actually don’t know why he asked me at all, as I ended up having it anyway. But I checked with Nurse Jones-Tulp [the crazy sister in law] and she said it’s great, as long as I don’t open the capsules and inject them into my arms and legs, which will then fall off?! Okaaaay – nurses know too many weird things! I am now armed with some of these, so when I get desperate I shall have one – oh, and I’ll be sure [as warned by Dr Important] NOT to drive heavy machinery whilst taking them either...what??

The left hand is playing up – as usual veins are being obnoxious. I asked them to use the left hand each time, as I need the right one for work, but now I have a lump of tissue in one of the veins, and it’s sort of like a lumpy bruise. Apparently that’ll go away in about 6 months...hmm! Interesting. This time my whole hand swelled up afterwards, and I had to ‘quickly’ whip my wedding ring off, as I was in danger of having a throttled finger. Kept it elevated and it was ok the next morning, but it seems I’d better change hands next time. Trouble is, it hurts like anything trying to use the keyboard, but better than having a ballooning hand I think! Plus it’s a nice black and blue.

This time seemed longer, and it wasn’t, in fact I think they pumped it in quicker which might account for the swollen hand. I couldn’t concentrate at all, managed a little game of scrabble and about 3 pages of my book [which I have had to read again – chemo brain!]. Drank about 5 litres of water, you spend half the time drinking, the other half tottering off to the loo! One handed is fun – I am always knocking the cannula and it’s a bit complicated wearing a jumper or not – once you’re cannulated, you can’t put anything on or take anything off, so I spent the morning freezing, and was ok in the afternoon. Better to take a wrap I think – at least it can be whipped on and off at will. Note to self: take a kikoy!

Yesterday and today feeling ok, just more sick than usual, but nothing too bad – brain isn’t working very well mind you, so I am hoping it’ll kick into touch tomorrow – have had the horrible ‘chemo mouth’ as well, where everything tastes disgusting, so you try eating all sorts of things but to no avail. Everything tastes like it’s infected. I reckon it’s the platinum in the chemo. Gross. Could have just done with my favourite food today – the sopa de peixe and Tortilha from my friend Bella’s restaurant in Espinho, the Barco Boador. Ola! I will see you soon, get the Planalto in babe!

Not in the best temper either – I wish people wouldn’t expect you to be actually. See how they get on with no sleep, constant fatigue even when you do sleep, feeling nauseous, bald, eyelashes falling out bit by bit and as if someone’s stamped on your hand, worrying about work, worrying about forgetting everything [the term ‘chemo brain’ is an actual cognitive dysfunction associated with chemo] and struggling to multi-task.

Chemo brain is not funny [this link will take you to an explanation of this], and can make you really stressed, as you cant even remember where your ‘list’ of things to do is!

BUT – only 3 to go!! Yippee!

a nerve wracking week

Friday 16th May

As usual, things happen, even though you wish they wouldn’t. Well, you certainly wish some things wouldn’t anyway! These last few days have been interesting. Being a freelancer is SUCH a bitch sometimes. When I first became ‘ill’ [is that what we call it? seems more like becoming deranged!] I have been expecting some difficulty, as I can’t travel due to the chemo, and it is the way we are used to working as a team. I travel to Portugal, we update and discuss everything and plan the future few weeks work, I come home, do it, go back and so on and so forth.

I know that compared to some people, a stressful work week is nothing, but, this is MY week not theirs. Actually ‘doing’ the work is no problem – I can work in the middle of the night if I need to and I have been lucky so far in that the tiredness has been manageable around other things. My work ethic is the same as always – I am paid to work a full 5 days a week, and that’s what I do and more sometimes, no matter what. And lucky for me, I work from home at the moment, so I can work in my hours when it suits me. Or rather, when it suits the chemo.

BUT – the work has to be sent to me. Thank God for the internet. Usually if I don’t have work, I will ask and do a bit of nagging until something arrives. But at the moment, I am not in ‘asking’ mode. I am in “someone else please take responsibility, and give me things to do, and I will do it” mode. I am in the usual frame of mind that I must absolutely get everything done if someone asks me to do it. It’s another control mechanism. And equally I understand that someone has to take time out in order to send me stuff to do. Hence the asking.

So, even though I have been determined to keep up with everything and do my utmost to work as per usual, if after asking, no-one gives me much to do [just odds and ends], I should chase them every day? I don’t think so. Having asked repeatedly for something constructive to do, I decided to teach myself how to use Illustrator [always useful] and deal with small things, adverts, translations etc while I waited for a response. Which was an email telling me that there is concern about justifying a renewal of next years contract, as I may not be doing enough work this year. Right. Just what I need on top of cancer, hysterectomy, chemo etc. Difficult to deal with. Better to call me and say ‘oy! what’s happening Sandhy, do this and this and this and hurry up’. No problem. Less stress.

But luckily the situation has resolved itself by discussion, as we have a good relationship and as yet we haven’t met a situation that we can’t sort out. But it was a bit frightening to think I may have no job through no fault of my own. So I am feeling quite relieved now, as I have a good work schedule, and know precisely what I’m supposed to be doing and by when. Good result and helps a lot to feel normal, which again I am convinced helps a lot toward recovery.

Roll on September when this is over and we can all get back to the usual routine!

Saturday, 17 May 2008

symptoms - very important girls!

I 'borrowed' this from the Daily Mail website.
Click on the image for a larger view.

WHEN will someone decide it's worth screening us for this? Or even make us aware that for a pitiful £100 or thereabouts, you can have the CA 125 test done yourself? Perhaps once they work out that it's more 'cost effective' in the long term for women NOT to have major surgery and chemotherapy etc.? Hmm - note to self - what was I thinking when I ignored my own body and thought everything might go away? Oh - that’s right! I wasn’t thinking at all!

If you notice any of the symptoms speed off to the GP and demand action.

Wednesday, 14 May 2008

removing the 25 pound fishing line

Wednesday 14th May

Right - it’s been dealt with. I did tell the nurse that I had actually arrived in order to throttle her, but as she’s such a sweetie, I couldn’t follow through...she was suitably apologetic, and we got cracking trying to remove the offending fishing line. The trouble with it was that it had a great big knot in it, about 15mm from the end, so there was no way it could get inside me, in order for it to be dissolved. And I couldn’t pull it out, as [Dr Bradley’s advice] it seems attached in there. Wouldn’t do to be yanking out bits of entrails.

We pulled it out a little way, which was difficult with the plastic tweezers [so many disposable items in this world!], so she had to fetch metal ones, and the resultant yanking and rummaging about was rather gruesome, but not too bad, considering it’s been hurting for weeks.

So she has snipped the stitch off so that it’s gone back inside, where apparently my body is programmed to destroy it, as it's a foreign substance. They are supposed to be dissolvable. Made from natural materials, like processed collagen [animal intestines!], silk and hair, as well as some synthetic materials that the body can break down - errrr!! But the actual type of suture material depends on the surgeon, so don’t panic! Personally I don’t really care, as long as it now disappears without further exasperating behaviour.

I wasn't worried [I think I might be a bit crackers?], just cheesed off, as I know it would have healed by now if the stitch hadn’t been external - I heal like lightning, so I was not very amused, but never mind - hopefully it's fixed now. The infected bit is already a lot better amazingly enough. The swelling has gone down, and the redness has also become a lot less. The strangest thing is that further up the scar there was an indentation, almost as if it had been pulled too tight from the back – that also appears to have smoothed out. Great! I hope so – if it flattens out properly I shall be chuffed to bits. It did feel horrible afterwards, as I think where it was 'pulling down', that bit must now be reorganising itself.

The only other little concern I now have with the wound is the fact that the left side of my stomach is more distended than the right. I mentioned this at my one and only surgical check up at 2 weeks, and the nurse thought it is likely to be a haematoma, which will resolve itself eventually. It’s a collection of blood at the surgery site, and happens in about 6% of women who have an abdominal hysterectomy, and is classed as a minor complication which shouldn’t need surgical drainage. Well, good show! If I have to have more surgery there will definitely be toys thrown from the pram.

Oh, and another interesting factoid for the girls – everyone is always blathering on about how you may feel depressed and ‘over emotional’ after the hysterectomy. Well, I don’t feel at all depressed about it, in fact it was rather amusing to delete the Lilets from all my handbags, suitcases and pockets, and from the Favourites in my shopping list [I notice they don’t do ‘buy one, get one free’ on THOSE!], and donate the hoard of them that I owned to my step daughter. She was chuffed too, as they cost a fortune. Plus no more ‘dysfunctional’ bleeding! Hooray!

And it certainly hasn’t made me any more moody than I think most people would be who are having chemo and dealing with all the side effects, coping with surgical menopause and IT’S side effects and trying to recover from major surgery all at the same time. One at a time would have been sufficient - but I suppose at least this way it's all over and done with at once? For example, if I were dealing with only the fatigue or dealing only the lack of hair, each would be manageable in itself, but everything in conjunction with everything else, can be a tad mind blowing at times.

Didn't sleep a wink last night so this morning I feel like hell - something wakes me up every HOUR [it’s me] almost on the hour...I’ll have to resort to bashing myself over the head with a mallet...apparently insomnia in women seems to be linked at least partly to lower oestrogen levels, which is why women often tend to develop insomnia at menopause. Oestrogen helps with the uptake of magnesium into the soft tissues, and magnesium is the main nutrient needed to relax muscles. So when oestrogen levels are low, magnesium deficiencies and conditions they can cause can be insomnia, heart palpitations, anxiety ... blah blah. Oh happy day!! Hopefully the Oil of Evening Primrose daily dose will sort that out.

How can I walk in my sleep if I am always awake then? Bang goes the exercise eh?

Tuesday, 13 May 2008

activity at the weekend...

Tuesday 13th May

I forgot to mention the ‘Grand Episode’ on Saturday – Andrew came home a bit early, and we decided to go for a walk to the Quay – he drove us down to the parking spot on the way, then we walked along the canal to the Port Royal pub. This is the longest walk I’ve done since the operation, and I was a bit worried to say the least. I’ve been doing those things where you lift your feet a bit and hold while you lie on your back, and it seems like even that is a bit strenuous, as my left thigh muscle decided it would go on strike [grr – what IS it with body parts that deliberately won’t get with the program?]. Anyway, I really want to get back on the bike by the summer, so we decided it wasn’t too far, and off we went. Gotta start somewhere.

Hmm – Exeter Council – hello? Never thought about the fact that a long, bare exposed path might be enhanced by the addition of a few benches here and there? It’s amazing how having problems walking yourself opens your eyes to how other people have to manage. Usually we go racing down that path like two bats out of hell, on our trusty bikes no sweat! BUT, walking along there was a slight nightmare, as there’s absolutely nowhere to park your butt once the little leggies get bored. So what about all those elderly people who would like to stroll down there? I think it must be quite daunting, as it’s a fair old way and I can’t imagine that a lot of people want to sit down on the grass verge, at the risk of not being able to get up again! Plus, a nice damp seat to be going on with. BAD planning as usual – I have a distinct impression that our council is populated by people who see no further than the end of their noses [A] and their account sheets [B]. We have superbly linked cycle paths in gorgeous surroundings, but all flat black tar, straight lines and absolutely no imagination / landscaping involved whatsoever. Grumble grumble.

Managed to get there, rest for awhile, then go further along to the actual Quay where they have opened a bijou little coffee shop which is rather jolly. We ignored it in favour of totally medicinal wine. Andrew not much of that, as he had to drive us home afterwards! Stopped there for a while, and then trundled back again, with a stop in the buttercups for a little rest. I was absolutely shattered afterward. But at least I made it.

Still a long way to go though before I will have the stamina I had before – I suppose the chemo doesn’t help. It’s confusing having to try to get back to ‘normal’ fitness levels whilst at the same time feeling like you should get lots of rest [and needing it unavoidably on occasions]. The two are mutually exclusive really. Perhaps walking in ones sleep is the answer??

Monday, 12 May 2008

fun with the suppurating scar

Monday 12th May

aaargh! what fun today!! I am coming undone it seems...

So, today’s interesting but stupid event. Ages ago I tootled up to see the nurse at the GP's about my wound, as I am a really fast healer, but the very bottom of it wouldn't heal. I told her I thought there must be a stitch or something causing the problem. But she said, "no no, it's normal, go away." Duly went away – hmm, in hindsight, that was stupid, as I KNEW something was wrong.

Well, it turns out I was correct, because it's been going all septic and gross, so I've been lobbing loads of iodine on it, to no avail. All red, and pus everywhere - yaargh! Plus it's been painful, which is not normal.

Today I decided to attack it after having a bath, and guess what should I find?? The bit of ‘whatever’ that I thought was a raised ridge of skin, was a stitch, coming out of me, then going back in again. grr. I managed to pull out the one end, then I thought: No worries, I'll just pull it all out. Hmm - then again, perhaps not!

Oh dear...pulled it quite a lot [and I had to pull it HARD – makes you sweat a bit I’ll tell you!], until I realised that it was actually pulling the back of the scar about 1cm up from where I was pulling! Repulsive – feels very odd. Now I had about 20mm of 25 pound fishing line hanging out of me!! Merde! So I decided that pulling it any harder might result in some kind of eruption, and called my GP. He called me back and decided I better not yank it out, as it sounds like it's attached to something [er - my insides??]. So tomorrow I am off to see the nurse and she better sort it or I shall bash her.

What fun eh? A scar from navel to pubic bone, and I still have MORE dramas? heh heh - never ending entertainment!

Thursday, 8 May 2008

9 weeks after surgery – 12 days to chemo III

Thursday 8th May

Well, I was right, I did feel much better the next day. Sunday I managed to clean the entire house, just trundling about doing a bit, then stopping – major achievement was actually changing the bed! Wow. Small things make a lot of difference – I was shattered afterwards, but at least I had a productive day.

I think I MAY have found the answer to the pains in my joints! Since I was such a grump on Saturday, I decided to get with the program a little more sensibly – that is, stop eating loads of trash [I am terrible for comfort eating – I could LIVE on chocolate, bread, pizza and stuff like that] and stop sitting on my butt quite so much. That’s a bit difficult, as my work is all on the computer, but I am now trying to break the day up with some exercise in between.

Monday was a holiday and Aj was back from Stoke, so we attacked the garden, Aj doing all the heavy stuff and I was doing the pots etc. I really struggled [this is mainly to do with having no stomach muscles yet], but we got loads done, and the SUN was out! That makes no end of difference. So now the house and the garden both look a lot better, and all the moving about, lifting little things and organising has done me a world of good. It was hard to motivate myself to do anything much at first, as it hurt my stomach/made me tired etc, but once I got past the initial struggle, I’ve actually improved and really noticed it.

Plus we’ve decided to get back to a ‘sensible’ eating plan – lots of salad, fruit, grilled meat/fish etc. It isn’t making me feel very cheery that I’ve gained a stone in weight! So, off it goes, bit by bit I hope – it will be nice to be able to get into my jeans again. I keep forgetting that I had surgery, as thinking about the effects of the chemo takes up all my time.

Basically at this point, healing is supposed be slow but steady. But apparently, for the first six months post-op, you're still doing heavy healing as all the scars turn to strong tissue and the nerves grow back. Also, [and no-one warns you about this, so it can cause panic!] the drain on your body expresses itself as a lot more fatigue that you expect, and you continue to have some tummy swelling as the day goes on or when you overstress it. Supposedly, you reach about 80% of your total healing at about six months and it takes the rest of your first post-op year to reach 100% of the healing you will ultimately achieve. This amount of time seems astonishing.

And this is ON TOP of the chemo – or vice versa, depending on how you look at it. No wonder I get tired! I’m surprised I’m not asleep all the time with all this going on – and it’s weird, as I don’t actually think about all this. Hmm – probably that’s why people are booked off work for 3 months – for a hysterectomy. AND, usually people are booked off for the same amount of time for chemo – sometimes I detest being a freelancer. Just imagine – 6 months off work – paid?! All that sleep – lovely...

Anyway, joint pains are now down to a dull roar, and I only get them if I sit still for too long. Very little nausea, dealt with by the ‘emergency’ tablets. So far, NO rash this time – great! Stomach muscles starting to get a bit of a work out, and generally feeling ok. Still getting attacks of tiredness, but not as much this week. Considering I’m in the midpoint of where the number of red blood cells is usually at its lowest [from 7 to 14 days after having the chemo], I’m not doing too badly. Cross my fingers it carries on this way. Right, that’s me done!

Saturday, 3 May 2008

After chemo session II. Very frustrated and grumpy

Saturday 3rd May

This weeks side effects so far: until yesterday, slight nausea until I managed to quickly get a tablet down in the morning, no worries there.

Then yesterday I decided I needed to do some things, and I couldn’t. SO frustrating – especially at this time of the year. The garden needs doing, the house needs cleaning, washing needs doing, trees need trimming & plants need potting – and all the normal jobs that we’d plan and do together are now becoming a mammoth list that Aj will have to manage virtually on his own – and with only one day off a week, that’s a pretty tall order. I am getting quite exasperated with being so useless. Plus if one more person tells me “ it doesn’t matter” I shall scream. Of course it matters. It’s the normal bit of my life.

Today I have painful joints [if this was an advert there’d be a ‘NEW’ sign on it – ‘NEW and IMPROVED’ side effects – just so you don’t get bored with the ‘OLD and Already-Dealt-With-Side-Effects’] – legs which feel as if they may collapse any minute and my right hand/arm is filled with stabbing pains. NOT good, as I need that one to work with. And like last time, the site of the surgery has stabbing pains too – very odd. And pretty unpleasant. Thirsty as anything, and eventually had to give it up and go back to bed for an hour. Tired, tired, tired. Grr. And CROSS.

Apparently this is to do with your haemoglobin. If the level in your blood is low you get very tired and it may not go away even if you sleep. True – but they should say ‘IF you can sleep’ – the chemo appears to give me insomnia! Plus the hot flushes wake me up as well. And no joy when I asked Dr Hong about those – she said take Evening Primrose Oil. Ok – trying that, but if it doesn’t help, I shall be squawking for something a little more serious.

This type of tiredness can be called chronic [long lasting] fatigue, and it really affects me mentally, physically and emotionally. Sometimes having a bath or answering the phone feels a bit too much like hard work. It’s very disruptive and it’s quite upsetting as it makes me resentful. Not a pretty thing.

The number of red blood cells is usually at its lowest from 7 to 14 days after your have your chemo. I feel like mine are there already only 4 days in. As the level of red blood cells starts to go up you get a bit of energy back. Hoorah – my problem is that when I am tired I am like a 3 year old – totally unreasonable and pretty grumpy. So, then once you feel ok for a few days, it's time for your next treatment and so on and so forth, ad nauseum until the chemo is over. Roll on that day!! Bad to wish your life away, but really, this is tedious. I am like a grizzling brat, and I hate it.

I think the worst thing is that there’s nothing you can do about it – if you could sleep and it went away, no problem. I’d be sleeping. But it doesn’t work like that. It eventually goes away on it’s own, then I have to speedily make the most of feeling lively. Which I do – but there’s not enough time to do stuff, and the surgery still stops me from hauling things about. So, not much gardening getting done! [this is also because I refuse to let Aj step foot in the flowerbeds heh heh].

Another thing is my hair still falls out everywhere – the sooner it departs once and for all, the better. I never knew so much hair grew on a persons head!

Oh well, enough moaning for one day – probably tomorrow will feel better.

Chemo: session II.

Tuesday 29th April

This week has been a trial and a half – lots of things to do, and not much energy. But saying that, the chemo session on Tuesday actually went a little faster this time, even including a visit with Dr Hong. So that was good, as it’s pretty depressing being in there. The nurses and Force ladies are great, but that’s not the point really – it all reminds you of what’s really going on, and I’m not that partial to thinking about it that deeply if I can avoid it.

Had less pain in my arm, and didn’t need the heated blanket to get through the Paclitaxel this time. Maybe my veins have decided to join forces with me after all? So, chemo done and dusted I trundled down to the Force little house to cadge a coffee while I waited for Aj to arrive. Such a cheerful lot down there, and no mincing words – “Hello, see you’ve been having that a wig? Really? Excellent wig! Anyway, have a cup of tea, and what about that restaurant etc” – walking about with a bloody great bandage on the back of your hand is a clue – must remember to take it off next time! A nice place to wait, and a good way to cut off from the chemo.

While I was there I asked for my blood levels, and of course the one that hadn’t come in was the only one I was really interested in, the CA-125 [the protein in your blood that is sometimes produced by ovarian cancer cells]. So I called back the next day and was amazed and chuffed to find that they’ve dropped right down. The norm is 0 – 35. Mine started at 1149, and they are now at 30!! Whoo hoo.

Date: CA-125
28/02/08 1149 [before the initial surgery]
25/03/08 161 [before the first session of chemo]
24/04/08 30 [before the 2nd session of chemo]

I asked the nurse on the phone if she was sure, as I was so startled! Apparently these levels can rise through unconnected things, and they may rise if the chemo discovers and ‘breaks up’ any cancer, as the cells then obviously travel through your blood and the levels go up. But saying that, Dr Hong again reiterated how ‘clean’ the surgery had been, so I am hoping they’ll just carry on dropping. Might be worth being bald after all if it's actually working!