check up or death sentence

Astoundingly, my last blog post was over 4 months ago - slack! How time flies when you're self employed.

In February 2008, I was diagnosed with ovarian cancer. SIX years  and three months ago. Then, I thought that I had 0 to 5 years to live at the outside. But here I am - over SIX years out of dx…and really starting to believe it. 'It' being - I 'might' survive. Tentatively.

I have been in stasis; 'suspension of the passage of time'…and it's odd. It's almost as if everything floats away - the only thing one can think of is one's Death Sentence and getting though the day…why bother to do any of those long term things? The little rat in the brain tells one 'ah you'll just die anyway, so why bother?' So you don't.

Well, the result is that now, due to my five years of inertia, we have a LOT of stuff to do - paint the house, inside and out; redo my office, as the cats have destroyed everything in there [little beasts]; we've recently dug up the entire garden and replanted totally everything. And so on. Lots of 'normal' things…the things that everyone complains about - but that [suddenly] I can't wait to get to grips with!

Sadly, I lost a lot of friends while I was wallowing in my own 'I'm going to die' sitcom. And each one of them, whilst being heart breaking, was also terrifying … me, but not me. Each time. I loved those gutsy girls so much, and now they're gone. But each of them lives on in my heart driving me to continuously raise funds, raise awareness - just the very little I can do to try to assuage my Survivors Guilt, and to hopefully save just one woman's life by getting the symptoms out there.

This week has been a tad fraught - the FH suddenly had a brainwave that SURELY it was time for my check-up? Hmm - I'd shelved it and was a bit startled to note that it was due in June. With the new appointment system at the RD&E, you no longer get your appointment as you leave your check-up - you wait for it to arrive in the post. Which means you could get notice 2 days in advance - which means you wouldn't have time to get bloods drawn etc. Which is STRESSFUL!

Recently, I have been having 'symptoms' [read: 'hysteria']. When I was diagnosed, one of the most extreme symptoms I had was exhaustion. Not tiredness; exhaustion. I'd be working, and suddenly HAVE to put my head on the desk, as I simply couldn't hold it up any more. And I have this now. And for the last two weeks.

Renninson [my surgeon and life saver] told me that IF I were to have a recurrence, the symptoms would be the same as they were initially. [couldn't work that one out at all - how is that possible, with no ovaries?]. And the last few weeks this remark has been bouncing around my skull like a death knell. In addition, I have had shocking pain in my gut - enough to double me over and stop me in my tracks. Always in the place where I had the laparoscopy, or where the initial tumour was. So more than likely adhesions right? And pain in my bones - my back, my wrists, my knees [they make a very alarming crunching sound on the way downstairs] - even my feet.

So I called my cancer nurse, the lovely Gail, and asked about my next appointment. We had a chat about what I've just mentioned and she said she'd try to find out when my appointment was. Viola! She rang back and said I could go THIS Friday! Shriek! Panic stations regarding the bloods and no time. But, all sorted by Gail - I was booked into the phlebotomists at the RD&E, and just had to turn up for the Vampire Attack. Which I did yesterday.

So tomorrow, I have The Check Up. I truly believe that only people who have had cancer or some other hideous disease that can recur can understand how scary this is. It's insane, as nothing has changed since I didn't know I had a check up, but actually everything has now that I DO know I have one! Handily, I only have tonight to be petrified! I suppose it's down to the fact that there is a 50/50 chance of a recurrence. Not bad odds, but I'd prefer better. One amazing thing is that Gail the Wonder Nurse called me today to say my CA 125 is still at 7!! That is fantastic. Really. It was 1149 when I was dx. So I do feel more confident now - but it's the symptoms that the surgeons read, not the CA 125 results.

Fingers crossed for tomorrow please! And DO know the symptoms …

still raising funds!

What a busy year this is – the time is just flying away…it's like water slipping through my hands. So many things happening all the time and I can't keep up. So many people I am neglecting…but luckily for me, I know they understand.

Friday just gone Vicky and I did a fund raiser in Stoke at the Baddeley Green Working Men's Club again – we raised £1225.00 before expenses. Vicky and I came away with £450 each to add to our Cycle Kenya funds – brilliant! I still have a load of money to put into my justgiving page, but haven't had time. I barely have time to sleep!

Saturday, I met up with some friends – one old friend I have known since my diagnosis yet never actually met, Emily. Two other friends I have met since then through Ovacome, and they have joined the jolly cancery group on Facebook. We had a lovely lunch and a massive chat – what a great afternoon. As usual, I was shattered…we took 4 1/2 hours to get to Stoke, did the event, collapsed into bed and then Saturday lots going on then the drive home [which was excellent – only 3 hours!].

And here's another friend I met up with in Stoke :) Annie couldn't make the lunch, but she made the event! Thanks sweetie!

In July, I am doing the LAST but not least fundraiser for the cycle Kenya fund – still trying to organise the date, but it will be fab if it comes off, as we have a free event photographer, a gorgeous Burlesque dancer, two bands [so far] and a BBC Devon newsreader to compère the event. Yay! Just some confusion over the date at the moment, but as soon as that is resolved, I will post the event here.

I started training for the Kenya cycle today [better late than never eh?] – 10 mile round trip in horrible wind. I seriously hate wind – I suffered from earache as a child, and wind always makes my ears try to kill me. And I am struggling with my hands being so painful since chemo and with the adhesions. But I WILL do this. I will. Although today I rather thought I wouldn't…I really hate wind…all I kept thinking was there will not be freezing wind in Kenya! Didn't stop me thinking I wouldn't be able to do it though..but I will. I have to!!

This was after a shopping trip [or three] to buy the necessities for the training weekend in the Cotswolds the week after next – shorts, helmet, waterproof jacket etc. I'll need all those things in Kenya, so hey ho – but being involved in a charity event is expensive! But worth it. In the meantime, the check up looms…but so does another week in Spain! yay!

I refuse to entertain any other result of my check-up than a good one. Most of the time.

addicted to speed

Whoa! Get that helmet on. This evening was such fun! The FH took me karting. We were invited by Tileflair – go them!!

This is me, number 28 – about to ZOOOOM round the track!

The first time round I did NOT like it – the little cart has steering that makes you feel like you are roping a wild bull! [yes, sure; I do that all the time right?] and as you can see in the pic, one’s butt is scraping the cement. Hard – we are used to girly type assisted steering and LOTS of control in the Beemer. These little monsters have no assistance, no control and it’s like driving a buffalo. A MAD one…I couldn’t get my head around the fact that no matter HOW tight you take a corner, the kart won’t roll. It may go into a mad tailspin. But definitely won't turn over. So I was too much on the brake. Grr.

After the first practice laps I was totally peeved – I’d really looked forward to it, and suddenly realised it wasn’t as easy  as I’d thought it would be. Me, I am a speed freak – I love to go FAST…I thought the karts would be like rally cars where you steer sort of incrementally…ffft! no way – steering these bad boys is tough! I am currently enjoying aching arms, stomach muscles and a completely buggered knee [it was crashed against the steering column the whole time]. AND I had to have a ‘baby’ seat, as I am such a shortarse that my legs were rubbing against the steering mechanism…anyway, after the third zoom round, I started to get with the program. This is FUN!! Total adrenalin rush to the head…

I think I am addicted to speed…

Here’s the ‘Totally NOT Prada Outfit’…I think those blokes don’t really understand what ‘small’ means? The crotch was round my knees…eheheh. And I need a hair cut!! Helmets do nothing for one’s hairstyle as you can see!

I really loved this – and afterwards, sitting in the pub with the FH, I was thinking…which is usually a bad idea. But I was thinking how nice it is to be able to do things like this. To be strong enough to wrench the wheel around [WRENCH being the operative word!]. To be brave enough to try it. To have someone to do it with. To have so much hair that I had to stuff it up the back of the helmet. To know that the pain in my gut is just the stupid adhesions complaining about unaccustomed hauling and mauling.  To just BE. To have fun.  Ah. Life is good!! Cancer? You can’t stop me you bitch!

Thanks Tileflair for the brilliant evening!!

yay!

so, a quick post – last week I had my 6 month check up. Boring boring I know…but I have been totally stressed with it being 6 WHOLE months…even though I know very well that IF I had a recurrence, those months make very little difference to the outcome of eventual treatment. But still. Logic and emotion don’t know one another in the cancery brain.

My CA 125 is one point down from last time – it’s 8. YAY!! Last time it was 9. Mine seems to fluctuate between 6 and 9. Good for me – well within the norms of 0>35. Although that means it hasn’t actually moved at all in real terms, it’s still a relief. 1 point up or down is nothing – a move of +30 is a worry.

My only problem right now seems to be some kind of bowel impaction. Where the cancer had spread to the bowel, they scraped it – so now the bowel [a very easily irritated thing – how dare it after all this drama!?] does weird things. The adhesions don’t help. It's painful and I need to get it sorted. Sometimes I am limping. What? Er – not ideal.  But for now, I am just so happy to be cancer free that the bowel thing can wait until next week…I will be off to the GP for drugs - woo – love drugs! Brilliant things!

In the meantime I am running like a mad woman – off to Stoke for the fundraiser tomorrow…

Then back home again Saturday night so I can start a new graphic design job which has a VERY tight deadline. Wednesday!! EEEK! Cleaning at the Salt Mines on Monday and Tuesday morning…and SO glad to be able to do it…never mind how ghastly it is – I can do it!!

In the meantime; I can no longer use Skype, as the Wild Things ATE the cable to the microphone! Then this evening they managed to knock a glass of wine into the keyboard…thank goodness for hairdryers…and then, Lily fell in to the bath. Super - a stress free evening. Not!

But they are adorable, and becoming very affectionate – see here; Lily…

and Bear…

idiots and neighbours

to go back to cancery stuff [ which I've been trying to avoid!] - I am still having sharp and odd pains in my belly. I am sure they are merely adhesions…but I am also thinking that 6 months is a LONG time between check ups. Even though I am so busy running from pillar to post…it weighs on my mind.

I can't quite get my head around it. All the pain is in the left hand side of my lower abdomen. Nothing happened there? Except scraping of the bowel where the cancer had spread from the ovary. Well, seems the bowel didn't think much of that and complains eternally. I hope. It makes me nervous though. Recurrence is never THAT far from my mind. Sadly.

Anyway, onward and upward! Some days, life is full of shit. really - it's infuriating, but sometimes the little things [the really meaningless things] can drive you completely sparko! Take today. I needed to go to the bank, and I needed cat food for the Small Beasties. I like to use small local shops [I am Mrs Anti-Sainsbury's-Taking-Over-The-World] and if the price is right, I'll use them. So off I went to the local 'centre' which has a load of little shops, including a really cool pet shop.

Got my kitten food, bread from the baker and did the banking [ha ha]. Felt rather jolly about the whole day so far.

I got into the car preparing to leave, and there was a woman getting into her small Gold Thing next to me. There was a horrendous wind today. She opened her rear passenger door, and the wind caught it - BANG! Into my rear passenger side panel. With force. I looked over, and she was merrily leaping into her Gold Thing, preparing to drive off. uh - I don't think so!! I leapt out of the car and asked her to stop [she would have had to run me over to leave].

I informed her that she had put a rather large dent in my Beemer. And that I'd like her insurance details please. She said she hadn't dented my car. I was astonished. And cross - and the more cross I become, the more polite and snotty I become. We had 'words'. I tried to explain to her that the obvious large scrape of gold [good grief - a gold car…ffft] paint on my dark blue car was from her door. She wasn't having it. Obviously [in her teeny brain - brain?? what brain??] IF her door had dented my car, there would be paint missing from her door. NOT!! Grr.

THEN she told me not to be 'stroppy'. Oh dear - like a red rag to a bull. Stroppy? And there was me, thinking I was being so restrained as I hadn't actually throttled her…some people have no idea at all about rage. I informed her that if she thought I was being stroppy [what a repulsive word!] she had yet to see true 'stroppiness' and should just push me a little harder in order to find out what it really is.

I think I must have looked quite scary [I tend to go bright white when I am furious], as she then said sorry and asked if I was 'all right'. DOH!! Obviously I was not!!

Eventually I got her phone and name - I hope. Not too serious if she gave the wrong details, as I took a photo of her car reg. And I have contacts in the police. So I will find her if she lied.

The whole point it this - if she'd just apologised, I'd have let it go. Who needs the hassle. It's a dent- there are far worse things, as we know. But she lied. I hate that. It will be interesting to see what happens when I call her for her details. I've had a quote - we will see.

Afterward I went round to my friend Claire - her husband is a brilliant artist and Body Shop person. He had a look at the car [in the pitch dark and rain - had to park under a lamp post!] and is confident it can be repaired for a reasonable amount. Claire supplied a calming glass of wine and lots of really neighbourly and 'friendy' type chat. And some headache tablets. :) I came away feeling much calmer - so lovely to have 'proper' neighbours - people who are there for you when you are at your wits end. Thanks Claire and John.

In the meantime, I have named the Wee Beasties!! Yay me!! This is Tigger Bear [Bear]:

And this is Tiger Lily [Lily]:

health [mine!]

I was thinking today - whilst stripping beds…[as you do!] some of you may be wondering as to the state of my health. As averse to the state of my life. Some of you have asked. Thank you. No, I'm not dead - just a lazy blogger ;)

And especially all you girls in the midst of chemo - all the girls I know OUT of chemo [and they're a lot!]. The people who follow this blog.

Well, I FEEL great. Like Wonder Woman - I'm not, but I feel like that, having survived [touch wood!] ovarian cancer for now. I am running about like a Blue Arsed Fly…fund raising and looking for work. And working! Doing mainly manual labour right now, gardening, cleaning, waiting on. And actually, I love it - it's helped me lose all the steroid weight, and I've met lots of people through it too. Yay - bring on networking!

The reason I feel like Wonder Woman is because I never thought I'd be able to do any of this. I was so weak and frail after chemo that I just felt that was it. I'd be 2 stone overweight and a weed for ever. Well, not so. Hoorah!

Plus I have a couple of graphic design jobs which keep me in touch and up to date with what I consider my 'real' work. Not that cleaning and gardening aren't - it's just that I suppose I am so used to being a graphic designer that it's hard to think of myself as anything else.

Regarding cancery stuff - I can honestly say that at the moment, I don't think about it an awful lot. I still do think about it - no brainer there. Hence this post. But not every second of every day. Mainly if something goes wrong - like today.

I have a horrible cold. It moved to my chest this morning so I was coughing like a grampus all day, which wrenched my stomach. Oops! Scarring doesn't like that and all afternoon I was nauseous. And there was pain on my left side where the adhesions were. Maybe there's still adhesion there - who knows? It's gone now, so who cares? But it's silly things like that that make you think stupid thoughts.

But the cough is going - and so are the thoughts…4 more months till I start going seriously bonkers ;)

Guest post: Smoking and Cancer

image from: http://www.zunal.com/webquest.php?w=36711

This post is by a friend. I probably agree with everything she says here. But I am having a cigarette as I read this through. Why? Because I think it makes me feel better. Does it really?? Some days, yes. Absolutely. But some days? Not really. This post is certainly food for thought. I give you over to Bj Gallagher. Whatever you do - smoke or not, this post is worth reading.

One thing I will say - BJ; there is no risk of you being 'cut off' by any sensible woman, either side of the Pond. We all need a wake up call occasionally, whether or not we choose to listen is entirely up to us. Thanks for the post! And! Where is all this chatter on Facebook regarding smoking?

And how odd…my lighter refuses to work!!

__________________________________________________________

http://www.cancer.gov/cancertopics/factsheet/Tobacco/cessation

With the following diatribe I am running the risk of being cut off by a circle of ovarian cancer women on both sides of the Pond. I cannot sit idly by and pretend that I am not reading what in fact I am. Lately, there has been a lot of chatter on Facebook regarding smoking amongst the circle of women discussing their ovarian cancer situations. It has become so prevalent that I am appalled to find that so many of the women are still smoking despite their diagnosis of cancer. On the one hand the ladies discuss their CA125 numbers while in the next breath they are discussing their cigarettes, whether to roll them, what brand of tobacco is better, how many a day, etc. Am I losing my mind?

What is going on here? What are you smoking women thinking?

Lest you think I am being self-righteous, let me say I, too, used to smoke – at least one pack a day for well over 30 years. In fact, I had become a closet smoker. My husband absolutely forbade it and, knowing my complaints would fall on deaf ears, I took to smoking in obscure, out of the way places where his presence would not be an issue. Hence, becoming a closet smoker – for what I deemed was my own sanity. Nothing could have been farther from the truth. Sanity has absolutely nothing to do with smoking. Smoking for me was a pleasure. After all, what’s a good cup of coffee without a cigarette. Or what is a good meal without a follow-up cigarette? To be honest, a good cup of coffee is just that, as is a good meal! They are good. They need no further follow up to make them memorable.

But then came the day in January 2001 when I was pronounced a victim of cancer. I, too, jumped on the bandwagon of CA 125 numbers, doing advocacy work for the cause, involving myself in clinical trials, speaking to groups, – mind you, all for the cause to stamp out ovarian cancer!! Yep, I was doing it all to further ovarian cancer education among the less informed women of society but I continued to smoke. Yes, the first couple of years were halcyon times – my numbers dropped dramatically with each chemo treatment; my hair fell out (so what?!), the steroids packed on the weight (ah, the cigarettes can control that to some extent), but I was doing my part and still enjoying the ciggies every opportunity I could. The struggle was mind blistering! I deemed myself unable to cope with the drama of my life without the smokes to carry me through.

Rubbish. Oh yes, the drama was taking over; the doctor’s appointments, the scans, the blood work; the constant day to day struggle to get through the day’s events without losing my sanity. Thank God, there were the cigarettes. My touchstone to sanity and
reality. If I could only have another cigarette, my world would be back on an even keel. The nicotine would temper the harsh reality of my life and the smoking would lull me into believing that at least one area of life BC (before cancer) would remain unchanged.

Furthermore, the relaxation of smoking would de-stress me if only for a few minutes. The fact was, I was focusing on when and how to get a cigarette to calm myself down than trying to get well. Getting well meant quitting smoking – not because I would suddenly be transformed to a woman without cancer but it meant one less stressor on my body. I was rattling off facts and figures with my cigarette pack in my handbag awaiting my quiet return for a few minutes of inhalation pleasure. Do you see where this is going?

Smoking had me believing all was going to be well in my upside down world. It was the last remnant of a connection to a previous life that was never to be again. I foolishly believed that nicotine held no power over me. That I had only to say the word and I was through with the vile act. Fact is, smoking controlled my world at that time. The person I saw each morning in the mirror had nothing to do with the person I once was. I wanted that person back – or at least a small vestige of her – and smoking would help me get back to her. Nothing could have been farther from the truth. BJ BC was gone forever. That life was only a distant memory – pleasant though it was. Not until I realized that I was being such a hypocrite – what, spouting all the facts and figures of cancer survival, causes, etc.- did I face the reality of my situation. How could I reconcile all the advocacy and continue to smoke when statistics clearly indicate that nicotine/smoking contribute to cancer.

There are four main contributors to cancer – you pick whichever cancer you want: Obesity, smoking, diet; and lifestyle. The following was taken directly from an article from the National Cancer Institute. The remainder of the article can be seen at the link at the top of this article. Please read it.

1. Quitting smoking substantially reduces the risk of developing and dying from cancer, and this benefit increases the longer a person remains smoke free. However, even after many years of not smoking, the risk of lung cancer in former smokers remains higher than in people who have never smoked (1).
The risk of premature death and the chance of developing cancer due to cigarettes depend on the number of years of smoking, the number of cigarettes smoked per day, the age at which smoking began, and the presence or absence of illness at the time of quitting. For people who have already developed cancer, quitting smoking reduces the risk of developing a second cancer (9, 10).

Now, ladies, I am not stupid nor do I wish to appear to be stupid. The facts clearly state one’s health improves when one quits smoking – even if you already have cancer! So, all the anxiety about CA125 numbers bouncing up and down, the adhesions and scans, the
constant threat of relapse, these issues are moot when we are NOT doing everything we as cancer patients can to turn that tide. If you still smoke, think about the message you send to your family, friends, colleagues and lesser known's: Your message to them is
this: The statistics don’t apply to me. I will get through this ordeal without having to give up a known body stressor that contributes to cancer because I am untouchable. I will focus my energy on the things I really can’t do anything about (example: CA125) and continue to ease my tensions with cigarettes.

Ladies, all the worry about your survival will do no good if you continue to add to the problem with smoking. I encourage you to take a major step on your own behalf and do all you can to stop smoking. You will feel so much better physically and mentally. Your focus will shift to healing your body instead of thwarting the healing process every time you light up.

Good luck to all of you. It won’t be easy but YOU CAN DO IT! You are Survivors!

Bj Gallagher.

Ow! This is getting old fast – the bruising on my tummy is coming OUT with a vengeance.

Yesterday I removed the itchy dressings; that made me feel a bit ill. Ugh. The dressings caused some kind of allergic reaction which is normal for me. My skin doesn't like hospital sticky things, no matter where they put them.

The stitches are poking out of the wounds! The one in my navel is the worst one – looks as if it has one vertical cut, then two horizontal ones. Or maybe the horizontal ones are the stitches? Who knows - all I know is it hurts like a bugger! I've stopped taking painkillers, as it's not that bad, but a bruise is a bruise, and I feel like I was kicked by a buffalo. Plus I am a wimp. I keep wondering what it must look like inside? Ugh.

The middle one is where they stabbed in the air thing – it's rather unnerving to read that they can't see ANYTHING until they have actually put these great big metal things IN. Hence the risk of perforated organs. Hmm…what fun.

As you can no doubt see, my tummy looks worse now than it did when I came home. And actually it feels worse too. But no doubt this time next week it'll be back to normal. Hooray. Can't wait, as I can't do circuit training or anything else much for that matter. And I've already cleaned, dusted and washed just about everything. Such excitement…I say! And actually, I am really looking forward to having no pain – hard to imagine, after having the adhesions for two years.

Today's colourful belly

day 3 gets scabby

Today I am a bit less sleepy headed. I've cut the painkillers by half [not completely, as last time I did that I got ill plus a resounding ear bashing from all concerned]. So it's all still hurting but it's a 3 on a scale of 1 – 10. Negligible. Like really stiff muscles with the occasional sharp stab for reminding me not to be stupid. The bit that hurts the most is the entry wound in my navel – where they blew me up like a balloon. I shudder to think about what one looks like on the operating table – a beached puffer fish?

Anyway, I am still wondering when I can take these bandages off. I don't really like wounds to be covered up, as they can get up to mischief if you can't see them. Although I am a bit squeamish about my own wounds – don't really like looking at them too much. Whereas if it's someone else's, no problem at all. Odd.

I have actually worked out that they do seem to be waterproof dressings, but one of them has no dressing so what about that one? I wish they'd write instructions on your tummy. Arrow: wash this one. Arrow: leave this one alone. Arrow: no, that's not a wound it's a bit of fluff, put your glasses on fool.

Another thing I have been wondering is if the adhesions will come back. So I sallied forth into cyber space and found an interesting article here, that says "In order to reduce the risk of further adhesion formation, we prefer to operate with a laparoscope and very fine instruments". Good. That's what he's done, so crossed fingers they will remain banished [I rather like 'vaporised' actually].

I was going to put some pictures of Diathermy here, but they made me feel sick, so you're spared that. Gross. BUT I thought I'd share the new scabby bits. As averse to the old scabby bits – actually, for those of you about to be operated on [I think we all worry about the scarring afterward] you can see the original scar here, it's pretty amazing the improvement; and here are the three new perforations…the old scar looks pretty neat right?

See what I mean about the one at the bottom though? No dressing. And it looks like some boy scout took his Handy Craft Knife and carved 'x' marks the spot! Quite hilarious taking pictures of your own stomach I might add…plus you can see everything a lot better on the computer screen. Is this a good thing I wonder??