statistics

Yesterday, I looked at some STATISTICS – and lost the plot a bit. Statistics always do that to me, and usually I avoid ‘seeing’ them if at all possible. Plus I usually don’t take any notice of them, because ‘statistically’ I should probably be dead. And as I’m not, I feel justified in ignoring them. A bit like weather reports. But the big bill board was a bit hard to NOT see, which led to the ‘omg! omg!’ attack. Fear creates anger in my head. Then I need to DO something, which is not always possible.

But, saying that, something useful DID come of my Statistic Shriek. I was reading an article [copied in below, as they sometimes disappear – actual article here] about the sad death of Pierce Brosnan's daughter, Charlotte, and I discovered that in the UK, women at high risk are eligible for annual screening once they reach the age of 35, or are five years away from when their youngest relative was diagnosed with the disease.

This is great! And why didn’t I know? Please share this information. It could save someone's life.

Pierce Brosnan with his daughter Charlotte, who has died of ovarian cancer, aged 42

“Catch ovarian cancer before the disease catches you

By Max Pemberton

The death of Pierce Brosnan's daughter, Charlotte, from ovarian cancer must increase awareness of this often ignored disease.

The sad news last week that Pierce Brosnan’s daughter, Charlotte Emily, has died of ovarian cancer at the age of 42 has put this oft-ignored disease on the news agenda. It is the fifth most common cancer in women, with 7,000 cases diagnosed annually in the UK, yet it is rarely in the headlines compared with, say, breast or cervical cancer.
Ovarian cancer has been linked to certain genetic mutations that are also implicated in breast cancer; and the tragedy of Charlotte’s death was compounded by the fact that her mother Cassandra, Brosnan’s first wife, died of the same disease in 1991.
Whenever someone in the public eye is diagnosed with or dies from a disease, the number of anxious people visiting their GP with apparent symptoms rises. Often, these are the ''worried well’’, but in the case of ovarian cancer, not all women who may be at increased risk realise they are entitled to regular monitoring on the NHS.
If any good can come from this death, it is an increased awareness of the support and screening services available for women with a higher-than-average chance of developing the disease. They include those who have a strong family history of ovarian or breast cancer (two or more close relatives from the same side of the family, such as a mother, sister or daughter, who are diagnosed under the age of 50). Such women may have inherited a mutation on the BRCA1 or BRCA2 gene and can be referred for genetic testing.
The chance of developing ovarian cancer for most women is one in 50, but for those with this mutation, the risk rises to between 15 and 45 per cent.

Women at high risk are eligible for annual screening once they reach the age of 35, or are five years away from when their youngest relative was diagnosed with the disease. Screening includes a blood test for a chemical that is sometimes produced by ovarian cancer cells and an ultrasound scan.
Anyone concerned about the risk of ovarian cancer should use the online information tool called Opera (http://www.macmillan.org.uk), which will help them decide whether they should seek medical advice.”

and so on…

Well, I STILL haven’t sorted the t-shirts…but, I am all over a fund raiser for March 2013. I have met this amazingly enthusiastic man, Med, of the Bar Venezia. He’s down on the Exeter quay, and I always remember him from a newspaper article about people trying to burgle his shop – he ended up sleeping behind his bar, in order to ‘deal with them’; bring it ON. He is going to help me with this, my FINAL fundraiser. I think…maybe final is a bit ‘final’ though?!

So in March, on Easter weekend,  I will be staging an event there to raise funds for the Cuba cycle. We will have live bands, a raffle, salsa dancing, food, beer, wine – you name it, we’ll have it! It will be a ticketed event. So watch this space for ticket info – ALL the money will go to research into ovarian, breast and cervical cancers.

AND my dear friend Julie is doing a golf day for me again – she raised £800 last year! Amazing...so, crossed fingers for this year’s event.

In the meantime, back at the Cancery Ranch, I had my check-up. Shriek.

As usual, I was trying to be normal. What the hell IS normal ANYWAY? No idea. But my normal is ‘worry about every little thing’. Every bruise, every pain, every bit of crap. All of which could be the precursor of a recurrence. Or not. Difficult one eh?

But happily, my CA 125 was 6 and everything else was cool. Apparently I am to be ‘kept on’ after my 5 year deadline though. That made me nervous for a while – but actually, that’s brilliant. I am all for lots of check ups. Keeps me sane.

we need more funds for research.

 

An excellent video – and it has Hani in it! :)

confused

I am a little bit confused. On one hand, I am so proud of myself for doing the Kenya Cycle – I don't really 'get' the other girls post Kenya depression thing – I am still totally wired that I actually did such a thing! I was back in my heart – my Africa!  Can't believe it actually…I would NEVER have thought I could do something like that. On the other hand, I was completely down waiting for a few horrible dates to go by. One, the day Dad died. Two, my Dad's birthday. Three, my check up. Oh, and then of course I am supposed to enjoy Christmas!! Riiight…like THAT is ever going to happen. I honestly don't think I will ever look forward to Christmas again. Every year, something horrible happens in December.

Christmas? No thank you. We are working Christmas day.

The confusion here is feeling great about an achievement I never expected to achieve – and feeling completely wrecked about things in my life that I can't control. WHY can't things just be enjoyable? WHY is there always, always something horrible to overshadow something joyful? It sucks.

BUT – I had fabulous news. You will recall me mentioning my Aunt had cancer – well, NO MORE! She is completely in remission! Best Christmas present ever.

And I, in the meantime, was wondering [as always] if I am still in remission or not. That's the thing you see – we walk the days wondering. We wait for results. We hope for the best [oh yes we are SO British!] we ask little – merely no cancer please. Please. 

A few of my friends have recurred..it sounds so simple doesn't it? Oh you have a recurrence? 'So sorry'…but the word recurrence for an ovarian cancer survivor is like waving a noose. It's like a death sentence. In most cases. We do NOT have a place where we can't worry.
I do try not to worry. But it's impossible actually.

So today's check up was rather fraught [two weeks in advance fraughtness]. But the result was brilliant. I am STILL in remission!! CA 125 was 10 [raised again but hey ho] and the physical was also ok. YAY! This was all achieved whilst a raging fire alarm was going off, the hospital has gone mad – new extension, so builders and bollards everywhere, NO parking and total chaos…NOT helpful.

But, fab result notwithstanding, my cat is lost :(
Here's Bear. She has very distinctive eyes.

She disappeared before the storm we had…2 days ago now. I am beside myself with worry and have asked everyone I know for help. Local radio stations, neighbours, etc. and they've all been brilliant. But still no sign.
If you see her, please bring her to the nearest vet – she is chipped, so they will call me. Thank you!

inclines

Ok good I've had a haircut so I look MUCH better. Not so much like a Weetabix. I have no idea what happens to my hair – the sun gets on it, viola, I am blonde. ER – yuck! So off I went [eventually] and had the lot chopped off.

And I feel better too – I am quite seriously considering a grade 2 for Kenya. I am beginning to wonder if hair is over rated.

And I have been cycling here and there [sometimes with my helmet on!] – this Sunday we did a hill near us that last year I would have been crying at the mere thought of it. Yay. Made it to the top no problem. Hills. Horrible. Only good thing about them is IF one eventually gets to the top, there's a downhill!

One person whom I always think about when I am really struggling is Sam. She cycles. But she also rock climbs – see her here. Amazing. She's an ovarian cancer survivor. In the true sense of the word. She is a Vice President of HERA, she is constantly challenging herself – and she has a great sense of humour. She does inspire me.

And the check-up went well – my CA 125 is at 9 again. A rise, but well within the norms of 0>35, so I am chuffed to bits. I kept thinking something would stop me from doing this Cycle Kenya. All the worries with my stomach. But the onc did a good check and she says everything seems good to go. What a relief!!
Now to get through the insurance palaver…grr.

What amazes me is how far I've come. This is during chemo, 2008 – note horrible wig and steroidy face. And I was always so cold.

This is in 2011, just about to do 57 miles for Force  – who'd have thought? Not me, that's for sure. I still have fat knees mind you...and now I am always hot! What a life eh? ;) In August we are doing the Great Shakespeare Ride – 100km.
Let's hope I can do the hills!

check up. and more cycling!

Getting off the Exe ferry with the bike – a bit heavy for stairs!
Pfft! Would so love to NOT have to have check ups – but I am sure I'd have a mental breakdown without them. Even the change from 3 monthly to 6 monthly almost gave me a heart attack…but I've got used to it now.

This next check up will be serious, as I feel like I need full MOT before I go to Kenya. For my mental health more than anything. Plus I am hoping everything is still ok and the CA 125 is LOW. Lots of problems with my tummy recently haven't helped my mind set, but I will see what they say. Hopefully it will be on the lines of: 'don't be stupid'.

Obviously I had to get a waiver for the travel insurance – another one of those hideous phone calls where I was talking to a person who is not trained deal with cancery types – plus they quite patently find the entire discussion repugnant. Well – ME TOO!! I so hate insurance companies. But I am stronger now, and can cope with it without bursting into tears afterward.
But you would think that an insurance company specifically chosen for this kind of event would have people who were a little more simpatico – trained or informed even?? Pfft! Well, that would be a NO. grr. Anyway.

I have been madly stuffing my brain with work and cycling in order to avoid having a brain full of cancery stuff. The cycle training is fabulous for this – you really cannot think about anything else but getting your butt UP THAT HILL when you're cycling. Last weekend we did a 50 mile [turned out to be 57 miles!] for Force. The FH and I were on our  mountain bikes – the road bike peeps kept asking us if we were mad [as they passed us at speed]…because our bikes weigh a ton compared to theirs, making it that much more difficult. But we did it in 5 and a half hours! brilliant – and the inclines were a pig, so we're well chuffed.

This weekend we did the Exe loop – turned out to be about 20 miles, and the track is amazing! Apart from one small glitch at Starcross, where the cycle path ends in a curb, as averse to a ramp…er – hello CRASH! My front wheel hugged the curb, I braked and flew over the handlebars. Even my best attempt at a commando roll didn't help – THREE grazes on my knee [how does that happen? surely one would have been sufficient?] a smashed back of the hand, plus an interesting shoulder wound. Thank goodness for gloves, or my palms would have resembled mince meat. I now need new gloves. Oh and a new knee might be nice ;)

So, here we have: insane blonde hair [what is that all about??], a grazed shoulder, knee and hand and a pained face!

The route is great – it hugs the estuary all the way to Exmouth.

We did home to Exmouth; in Exmouth we went to our favourite pub, the Grove [this is where we went after I was diagnosed – I always remember ringing my Mum and brother from there – it's my good luck pub! Views over the estuary are wonderful] then took the ferry across to Starcross because I love going on ferries ;) It costs £5.00 each plus £1.00 for each bike. But it was fun. And today was so hot! Amazing weather. I really need to get my lazy butt to the hairdressers too – my hair has gone blonde? Madness. Then Starcross to home.

From Starcross we made our [wounded and stinging!] way to the Turf Locks, where all they are allowed to give bleeding people is a 'non alcoholic wet wipe'. For which I was extremely grateful…but really! What happened to germolene or spray iodine? Health & safety patently put paid to sense. I put loads of ice on the bleeding bits and then had a lovely glass of medicinal [heh heh]  wine in the sun.

We then trundled the last 5 miles home against the wind [as usual!]from there and had a fab bbq in the garden, which was like Morocco – HOT!! What a lovely day! Look – lots of Hollyhocks on the path.

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…

breathless

I am always rushing these days. And this week has been no exception. It seems I don't have enough moments in the day. Or enough days in the week. I am breathless.

It's been a good week, and a very bad week. A very LONG week. Count the good first - my check up was fine, CA 125 up to 9 again but still well within the norms. A milestone for me, as it's 2 years [amazing! doesn't feel like it!] since my last chemo in August 2008 and I am now going for my next check up in SIX months time. Chemo never seems far away - hopefully it soon will feel that way. But I still remember this day so vividly - I can still feel how my scalp felt then…

Yay? 6 months cancer free! hmm - I think so. But it doesn't matter, as I can call and go there whenever I like if I feel unsettled. So. A GREAT result. Relief. And Rachel has been declared totally cancer free!! Amazing!

BAD because ALL bloody week my friends have been having lots of problems. Of my dear friends, one is constantly back and forth for scans, blood tests, this that and the other - and no-one seems to know what's wrong; another one's CA 125 has shot up rather alarmingly; to be resolved soon we hope. Another has been diagnosed with breast cancer and is now in chemo. My friends [she feels like my sister] mother has been diagnosed with the same. She is in for surgery this week. WHAT is going on?? It's almost like a message, pounding it home how grateful I should be.

And I am - but I so wish I could share the good luck. Because worse was yet to come.

check up time again…

Check up on the horizon. Bah. And here I am, having a GREAT day just 2 weeks before…why am I worrying??

Trying to be normal. But it  makes me drink too much, smoke too much [giving THAT shit up soon!!], talk too much [well, 'gibber' would probably be the operative word actually - think 'bouncing off the walls'...] - I stand in my garden looking at the flowers and cry for no reason.  My behaviour is erratic. I am out of control a lot of the time. I think about death. A lot.  STILL!! Why?

My husband is an angel when this is going on. This week he brought me flowers for no reason. He understands, and he lets me 'get on with it'. He doesn't judge me or hassle me or question me - he allows for lunacy, and he allows for bad behaviour. Thank goodness for that. Not many people are so forgiving.

I'm not sure how I'd cope without him actually. I have total free reign…I can do whatever I need or want to, for a limited time, and know there is always someone to save me if I push it too far. A safety net. I need that, as I am an addictive personality and a crazy person at the best of times - the FH helps me survive myself.

It's odd - I STILL can't cope. I do cope - but I don't. Pathetic really. But I am not so far from the diagnosis and surgery and chemo that I feel safe yet. I do wonder if I ever will. Feel 'safe' I mean. I hope I will. Eventually. I am sure I will - but when? I still starkly remember being bald. I still remember the shocking pain in my legs from chemo. I recall the night I had to phone the ward because I suddenly developed a burning rash. I recall being frightened quite a lot. And trying so hard to hide that.

I mean, at the end of the day, I'm not a weakling, I'm not new to this. So why do I have a total meltdown at each check up?? I think I know why - because at each check up, there's the chance that MAYBE this time the cancer may have returned. Quite often with ovarian cancer there are no symptoms of recurrence until it's late in the day. That sucks. No matter what you do, it could be there, sneaking about, ravaging your insides - and you'd never know. Fuck. It's so frustrating. And so scary.

BUT - hey ho, we have to KBO eh? Churchill understood the dangers of defeatism and poor morale as a soldier and leader, so he set the example needed to inspire others around him…and he kept “buggering on.” Well, I shall just do that.

Bugger…on.

next fundraiser and looking for work…still!

So now I am sorting out the NEXT fundraiser! Tell you what, this fundraising is exhausting stuff! If I were being paid to do it, I'd be raking it in. I am worried, as I am actually starting to enjoy it. Hmm - madness sets in?

I am seriously considering applying for jobs as an Events Organiser - can't be more difficult than finding a job as a graphic designer!! You'd think 10 years experience would be of interest to SOMEONE. But no…every job I apply for I get no reply. How rude. In Devon it seems it's ok to employ only people who have just left school. Oh, and to not bother to let one know whether you have the job or not. This explains a lot about Devon's advertising and marketing!! Anyway…onward and upward, I still have the cleaning job, the furniture maker thing and some gardening. So, all is not lost. Yet.

Today I went with the FH to the job centre - well, they were about as much use as a third buttock. I have to 'go away and phone in for an appointment ' and their job seeking help is to allow one to use their [odd] computers to access the job web site. Which I do at home anyway! It seems that if I work more than 16 hours a week, I am not eligible for benefits. If I work less than 30 hours a week, I am not eligible for tax credits. So, seems if I just don't bother my ass, I can be on the dole, but as I am trying my best to work, they won't help me. This makes no sense. Grr.

In the meantime back at the ranch, I have another fundraiser on the go, at the Port Royal pub on Exeter Quay. I have discovered that if I want to do a raffle in advance of the event [and I do want to - the 3 night weekend at Fingle Glen Golf club, kindly donated by Andy Bridgeman], I have to have a 'gaming licence'. Uh what? Now I am a gambling type? So we are having a 'discussion', the council and I, to try to sort it out. Very complicated. I just want to raise money for women's cancers - and the licence costs £40.00! uff…but they are being very helpful, so I'll see what tomorrow's phone call brings. I'm hoping for a good result, as the event is SOON! I need to sell a LOT of tickets for that - it's worth at least £300.00, so I need to raise more. Eek. But I do have my Secret Weapon: Graham!

Speaking of results, I am off for the beastly blood tests in the morning. Ugh. Next check up looms. Not in the best of moods this week I dare say. In fact, feeling quite the grouch.

And today was mad - after the pathetic result at the job centre, the FH decided that I need a new dress for my friend Julie's 50th birthday bash. I was NOT in shopping mode - so of course I found the perfect dress!! AND in a size 10 which I haven't fitted into since before my dx. Woop! Credit card is feeling the strain heh heh. But as it's her 50th AND her '5 year survivor of ovarian cancer' bash - well, what can you do? It's a bit special isn't it? Check out the cool frock from All Saints [my favourite shop in the universe]! Will be superb with my R+B leopard skin shoes methinks :o)

Oh and by the way, got the results of my mammogram after a shouting match with the secretary. She didn't QUITE get it that I need to know NOW not in 3 weeks time. But it sank in and she became very helpful - rang me back the same day bless her -  all clear!! Yay!! I should be cheerful right? I AM trying…

such a week!

Monday I was a bit frantic as usual, as the 3 month check up was looming on Tuesday. Even though I've recently had the laparoscopy and biopsy and been told there was no evidence of cancer [by the beenied surgeon!], I was still worried and tense. With cancer you just never know – it seems could sneak back in an instant…or it could remain dead and nuked for good [this, of course , is the ideal scenario]. It doesn't seem to matter what one's been told or when – the worry is still there. But happily, my CA 125 was back down to 7. SEVEN!! Who hoo – that was nice to hear!

It's always such a relief.

Tuesday night was the Secret Guide to Women's Health, which also worried me a bit – I mean I'm not exactly TV material, and we didn't see the final cut before it aired, so you never know what you're going to look or sound like. Thankfully, it seemed ok to me. The FH was fab – made me cry to watch him – it brought it all back. The long nights where I was awake in fear of my life, the days where the FH would make every effort to take me somewhere that would cheer me up – the horrible chemo…being bald and frightened. Being on Planet Cancer.

A lot of it was cut, but Hani came over with loads of info, so it worked. Well, it must have, as so many women have been in touch with me since the program. I am amazed – before I had cancer, I wouldn't have been interested in it. At all. I don't think that's unusual  – after all, it's a pretty horrible subject right? None of us wants to think about dying. Particularly dying a horrible painful cancery death.

But these women are interested because they want to know how to protect their lives. And that's the whole point – to make women aware. Ovarian cancer is the fifth most common cancer in females in the UK and the second most common gynaecological cancer after uterus. You'd never know it would you?

In the UK it affects over 6,800 women a year, and we have the highest death rate in Europe. The incidence of ovarian cancer is highest in USA and Northern Europe and lowest in Africa and Asia. Ugh – not good. I should have stayed in Africa! So being aware of the symptoms is vital – early detection saves a lot of lives.

So, here are some pics from the film set!

From left to right; Dr Rosemary, Coleen Nolan, me and Professor Hani Gabra.

Apart from that, I have been doing a million things – still trying [how frustrating is the internet sometimes??] to upload Hacker Design stuff and Ecobeds to various web sites.

This morning I had an interview just to 'see' my portfolio. We will see if anything comes of that. Doing logo work for Ecobeds and Hacker…excel sheets of prices, packing and weights blah blah. Address data base, email database...and of course stuff for the Riviera Tile & Bathrooms bunch! Posters and web site and then need to get cracking on killerpaint web site too…uff

Yay – busy!!

five days to go

 

Hmm – so busy ranting about the STOLEN 'A board' [that made me SO cross! thieving is so disgusting. yes, chop off the hand] that I forgot to update The Worry List.

Worry 03: Delete [thud…]

The drive home from Gatwick was ok, as far as driving for hours on end in billowing [yes, 'billowing' – not 'normal', no that'd be too easy – but it least it wasn't freezing fog] FOG, tipping rain and pitch darkness goes. Traffic wasn't as heavy as I'd expected and the trip was uneventful [love that word] apart from the usual halfwits who can't drive even in daylight. So I had an early night after a lovely chat with the FH. So good to be home and see his little face. Yay!

Worry 04: Delete [another resounding thud]

This morning, up nice and early, unpacked, slapped the laptop into sync mode with the pc and raced off to have my bloods taken. Yay -the phlebotomist is also my GP's secretary. No exploding pumps or problems at all. It seems the veins in my right arm [only one lot of chemo went in that arm, which may have helped the veins – less mustard gas is possibly a good thing] are now recovering. So my blood is now en route in it's little tube to the lab for scrutiny. I'd quite like to see that lab. When my blood is there. So I can get my results immediately.

Yes, I need therapy. Anyway, the rest of the list:

Worry 02: under construction…well. what can one say?

Worry 05 [and Worry 01]: bah. I keep thinking I am dying. Full of cancer. Every ache or pain I become distraught. In my head. Here. I try to deal with that. I am sure I am gaining ground, even though sometimes the people around me seem to forget where I am...just one year out of chemo. I am not sure if the shock has worn off even now – although I am VERY good at ''appearing'' normal. Perhaps TOO good. Maybe sometimes I should collapse on the floor. Screaming. Just so people can see what's really going on in my head. But then again, that wouldn't be very professional; now would it??

one week to go

Seven more days and I have my next check up. Uff. That'd be Worry No: 01.

I have plenty of other things to worry about, but that’s the thing that keeps pushing it's scary little face to the forefront of my mind. It makes everything else seem quite irritating and gnat like.

Worry 02: I am quite keen to get a new contract sorted out here in Portugal - the 2 months notice period has come and gone, so ideally, if the company wish to renew it for another year we will resolve that before I return to the UK. That's in, and under consideration. If they don't I will need 4 hours to say goodbye to everyone. If they do renew, that will be one less thing to stress about.

Worry 03: Drive home late tomorrow night. I am always concerned at my tiredness level - Gatwick is three and a half hours drive. During rush hour. In the dark [and probably the rain] Oh joy.

Worry 04: I get home, unpack, go to sleep, jump up Thursday morning for work, then race to the GP to have my bloods taken. I still hate needles even after all the stabbing and prodding that's gone on over the last 2 years. But I have wised up and no longer allow this appointment to be made with a nurse - I much prefer the phlebotomist thanks. Pumps exploding off the needle and black and blue arms have taught me a lesson. My veins still suck [well, they lay low that's for sure] and need an expert to find them without everyone ending up looking rather pale. Not to mention feeling rather cross.

For the last few weeks I have had a horrendous cold and cough  [thankfully the cough is no longer forcing me to bend in half and the cold is gone] but I haven't wanted to ask for any antibiotics in case they affect my blood tests. Yes, I know…stupid. But there you go. So once I've had the blood drawn, if I am still coughing my guts up, I shall shoot off to the GP and get something for it.

Worry 05 [see Worry 01]: The Check Up…tadaaahh…why am I not used to this by now eh? Although I definitely feel less demented so far, there are still 7 days to go. Lots of time yet for mass hysteria. And I don't think I'll ever get used to it; maybe it is expecting too much to even try. It's like 'getting used to' being hit by a car - I suppose you probably just don't. Though I wouldn't like to have to prove that…

And last but not least - I haven't done ANY Christmas shopping at all! Useless! After Tuesdays check up and Wednesday's TV thing, that is going to be the order of business methinks. Although next Thursday night we're off out for a girly dinner, so it may have to wait until I recover from that…perhaps I'll simply grab Aj and abscond over Christmas? Now there's a thought…

what a day

Arrived with Julie at the Oncology department, and the first thing was, they didn't have our details anywhere. Hello heart failure…but they soon found everything and off we went to the waiting room. Waiting…waiting..and MORE waiting! Bugger. They were 1 hour behind. Sitting there feeling sick. Eventually Julie went in, and came out with a good result - she will be scanned soon, and as it's near her 5 year mark, that seems sensible.

Off she went to the pub to wait for me. I was an age…but everything went well, and as I came out, Aj arrived to pick me up, and off we went to the pub to meet J and celebrate our brilliant results, PLUS Julie's birthday!

Brilliant - my CA 125 is back down to 6. Last time it was 9 - mine seems to nip up and down between 9 and 6 so I am very happy. Dr Hong was happy, Aj was happy and life is good! The norms are 0 – 35 (μg/mL).

Today I discovered something that I was 'sort of' aware of, but didn't really take much notice of as it doesn't apply to me. But since hearing my friend MA's story, I took more interest. MA's CA 125 jumps about all over the place – but this may be the reason for her not to worry too much.

The CA 125 is a marker. [well, it's also a Chinese aeroplane, but there you go…]. It can be the harbinger of a recurrence of ovarian cancer if it suddenly shifts by more than 20 points. But for example, my tumour was leaking CA 125 into my system before surgery. Many tumours don't. If the tumour isn't leaking into the system initially, the CA 125 isn't very reliable as a marker afterwards.

So before my surgery, my CA 125 was 1149. After surgery and before the first session of chemo it was 161 [25/03/08]. It went down to 30 before the 2nd session of chemo [24/04/08] – it was 7 before the 5th session of chemo. Now it is 6. Last check up, it was 9. Therefore, my CA 125 levels are a pretty reliable guide to what is going on with the cancer in my body. Right now it seems there isn't any. YAY!!

Dr Hong was quite concerned with the constant pain in my side. But she doesn't want to scan me yet, as I was pretty much blasted with radiation last year [sound scan, cat scan blah blah]. She seems to think that as my CA 125 is steady [i.e.: it is following the same constant pattern it has since the outset], and I have no other symptoms, that we can wait until November [next check up] and see where we are. Even if it was a recurrence [which it bloody isn't!], 4 months would make no difference to the treatment/outcome.

So. I am now cancer free for another 4 months! Phew…we are totally exhausted, and both off for an early night - good news is great, but waiting for it? Aaargh…

the day before 'The Check Up' – screaming. quietly…

what I have wanted to know for a while is this: WHY do we get so distressed about having this check up?  And I think I may have discovered the answer.

Weeks before, I am thinking about what 'could' happen, what 'might' happen – the worst scenarios and the best. Plan A and Plan B. [gotta have those – control, control…]. And I know I am not alone in this. At first I thought I was, but now I know better.

EVERYONE who has had cancer [any kind – oh, and how fun that there are so many varieties of this fucking disease!!] that I know, freaks out in the weeks preceding The Check Up. It's odd, as as soon as I walk into the Oncology department I am totally Zen. I have a comfort zone there, as they are the people who saved my life, so if they did it once, in a worst case scenario, they can do it again. So, once I am there I am calm and totally 'in the zone'. Am I naive? Am I stupid? Or am I realistic?

But Aj put it completely into perspective for me when he said that actually, this is a 'life or death' appointment. And he's right.

It is life or death.

And that's scary. I never really managed to think it through until he said that, but I think that's actually what makes us all into quivering wrecks. And please, anyone, correct me if I'm wrong here. But for me, the [almost] subliminal thought that 'this time' could be the time that they tell you it's come back. That bastard cancer. That sneaking, murdering, hideous little cell that could kill me if I let it. It could be the day that I discover I am going to die of this disease. Soon. And in pain. Probably in agony. It could be the day that I discover I have to have more chemo. Or some new treatment. Or more surgery. Or that they can't do anything more for me because I am terminal. Or anything.

It's a screaming unknown. And we go into it screaming. Quietly. And hiding the screams with laughter or chatter or blasé remarks. Trying to be POSITIVE. BEING positive.

But the screams batter round your brain….echoing hell. A hell no-one can see.

How positive can we be?? I know I try so hard. It takes almost all my energy. Day in, day out, trying to just keep a cheerful face on…and I know my friends do too. But what if the surgeon / doctor / oncologist gives one that bad news? How strong do we have to be?  How strong CAN we be? Do we have to just carry on 'being positive' because friends and relatives expect it of us? Or is there a point we reach that we just say: "no, enough"…

I hope I never, ever have to find out.

Frenzied plans and feeling jumpy

22 July 2009

On Sunday I arrived in Portugal for a weeks work. This is a normal event and was planned well in advance. But I had no plans to return in August, as August is the month that the tile industry 'goes to sleep'. Usually most of the staff is on holiday, the kilns are shut down for maintenance and there is a skeleton staff running the factory. We tend to try to get ourselves organised which usually involves deleting and filing zillions of things that seem to get all over our computers and desks during the preceding months.

But this year, it seems I need to be here [Portugal] in August. But unfortunately I have already made plans and with only two weeks notice it is not possible to change all of them, and difficult to change some of them. The plans are all on the weekends apart from one weekend, which is the week of my 4 monthly check-up [SHRIEK!!] on the 11th.

The other weekends all involve people arriving and staying at the house. They have booked holiday or bought train tickets, bus tickets etc. and there is no way I can change those dates without letting a lot of people down. And I don't want to anyway. Miss the ''Annual Famous For Hangovers Cocktail Party''? I don’t think so!

So the only remaining thing I COULD change was my oncology appointment . That would free up the week of the 9th to the 15th so that I could come to Portugal [unfortunately the flights are Sunday to Sunday or you walk].

Uff - NOT something I particularly wanted to do, as I didn't want to make it any later, and so far I hadn't been thinking about it too much. It was, after all, 'weeks away'. But I had to at least try to free one week in August, and that was the only solution. So I rang the oncology department. They wanted to know why I needed to change it, so I explained. The woman I spoke to was so kind! She found an appointment 2 weeks AFTER my current one, and when I said I would get far too anxious waiting longer and may end up in prison for some violent crime, she seemed to think that was quite normal and acceptable, and hunted about further. Whilst all this was going on I was feeling sick and panicked. I didn't want to even think about that appointment right then, let alone phone up and change it. I was sort of hoping it would be impossible.

After some rummaging, viola! She came up with an appointment on the 28th July. Yay!! I think…Ok - but what about my bloods? I am supposed to have them done a week before, and I am in Portugal right now, so that's impossible. Nice Oncology Person said not to worry about that, just get myself down to the outpatients on Monday, they will do the bloods and process them for Tuesdays appointment. So, the plan is now to get home at 12.30 on Sunday night from Portugal. Jump up Monday morning and race to the Outpatients in order to get seen as soon as possible - I don't fancy sitting there for hours, as the girl are down Monday and I want to see them before they go home. Then Tuesday, The Dreaded Check-up!!

All rather rushed and making me jumpy. After I finished reorganising the appointment I was completely drained.

The good things about this are:
I have hardly any time to worry about the check-up
I am here with Julie, [she’s on holiday!] and her appointment is the same day, half an hour before mine, so we can worry together
Aj doesn’t have to put up with the Post Check-up Panics and Touchy Behaviour :o)
The sooner it’s done, the sooner I will know I am cancer free for another four months

The bad things are:
I AM STRESSED ABOUT THIS AS USUAL!!!

Better for everyone to stay out of my face this week that's for sure. I am head down and working in the day, and chilling out with Julie in the evening, and Aj checking up on me by phone. Roll on Tuesday evening when we shall all be at the pub celebrating!

In the meantime, I am in a bad mood. And nervous. And pleased that this time next week it'll be done for another 4 months.

I hope.

an invigorating day

Tuesday, 7 April 2009


What a great day - it was supposed to be pouring with rain. It didn’t - it was really sunny! Lots of those lovely gigantic fluffy white clouds racing about, and a breeze, but it was sort of invigorating. Especially when I got out of the car to walk to the entrance of the RD&E. I was almost blown right past.

This time I went really early, to avoid the mad panic of trying to park [last time I was in tears as I was almost late through looking for a spot]. I got stuck in traffic though, so I only had about 12 miles left in the tank and no time to fill up. So much for planning. I was wondering if that would be enough petrol to drive round the car park 600 times. Then I thought "I don’t care - if I run out, I shall dump the car and run for it". One less thing to worry about. But startlingly enough I managed to get a spot in 15 minutes! So I was very early. Nipped into the hospital, got a big fat sandwich and some crisps and sat in the car eating them, faffing about on the internet. Oh I love my iPhone. Excellent brainless distraction machine! And it was hot! Paid £3.00 for the privilege of parking there, so I thought I may as well make the most of it.

At 3.00 I went in. And happily, Aj arrived not long after. He also managed to find parking quickly. See? I told you what a good day it was.

Today's check up was no problem. Although my CA 125 has risen from 6 to 9, apparently that's fine. [take note!! it's gone up, but I am ok. It was 9 before, then 7, then 6 now 9 again]. Renninson, my demented surgeon, said that he is not even remotely concerned, and has decided I only need go back in 4 months now instead of 3. Yay!! The other thing he said was that he treats ‘me’ not my blood results, so I shouldn’t worry about those unless it jumped to 40 for example. Then he’d think more seriously. And I don’t need a scan because he whipped everything out, and I have no signs of a recurrence so far. IF there were any signs, they would do a scan. Otherwise it’s not necessary. Ok again. Scans are weird and if I don’t need one, I don’t want one. He’s the expert.

But at first I was like: "what??" and he was like: "the longer you go on with no problems, the less I want to see you. And the more 'normality' you can attain". Suits me thanks!

I got him to do a thorough check of my abdomen though, as I have a lot of pain after the circuit training - his comment was: "you would have had that before the surgery". I would? Who knows - I didn’t do circuit training before I had cancer. I had more sense!

But I have an ongoing/on/off pain in the left side of my abdomen. Apparently that is my lower bowel [after being prodded rather violently, he ascertained that] and it may be that it's not 'clearing' properly. Hence the pain. Oh joy. Now I will be guzzling gallons of water a day on his advice. Although I can't say as I've had any bowel problems, but if that will stop it hurting, good for me. He said that’s the reason I can feel it. So. Water. Lots of. I wonder if wine counts?

Then I was wittering on about the 'hard, thudding' bit under my navel - that's my aorta and apparently [Renninson is most peculiar - very dry humour] if I didn't have it, my legs would fall off?? whahahaha - don't you love it when someone is peering up your nether regions and cracking jokes?? hmm...maybe not! eheheh. And the only other reason I can feel it is because I’m so 'slim'?? Had to tell you that! I feel like a fat porker, but if my surgeon thinks I'm slim, well, it can’t be that bad eh?

So, good news all round, but a very sore gut this evening where it's been prodded, poked and the blasted speculum was FREEZING cold!! I felt like bashing him over the head! I would have, but after all, if not for him I wouldn’t be feeling anything at all. So he can do what he likes actually.

I am totally exhausted from relief. I did do rather well this time in the stressing out department. But I don't think you realise how much you're worrying until it's done. No more worrying now for 4 months. Cancer free once again. Hooray!

things to be cheerful about: part 01

Tuesday 20th January

wow, what a great week I had last week - I wish I could share how good it has made me feel with everyone I know! No that’s wrong - I wish everyone could feel as happy as I am right now, and as well as I feel right now.

Monday I went to see my Great GP, [I love my eccentric GP] as it has been niggling me that in the States, they send you for a mammogram if you have had OC. OC and breast cancer are quite closely linked and that makes me a bit nervy.

In the UK you are only entitled to have a mammogram free after you turn 50 - there is a sensible reason for this, as apparently the breast tissue 'thickens' after you hit menopause, and until that happens the mammogram is not much use. As I am now in menopause, albeit surgical, I asked him to send me for one. No problemo, says the Great GP. So, viola! I have a breast crushing experience to look forward to. Can’t be as bad as being hacked in half, so I am not concerned. Better that than getting surprise breast cancer.

Monday night, off to circuit training. Groan. But I am improving, and I am definitely noticing a difference in my energy levels. And I have a semblance of stomach muscles!!

Tuesday - the Dreaded Day. The bloody check up. That was at 3.00, so I had the whole day to wait, but it was a mad day, as I seemed to run from pillar to post organising a zillion things; check in on-line for Frankfurt the next day [another new experience - so cool! you can download your boarding pass! brilliant, no waiting!]. Find the passport and the letter. Do some work. Order some groceries so Aj doesn’t have to live on rice while I am gone. Etc.

Eventually arrived at the time, Jones was waiting outside in his speedy van to zoom me to the hospital. That was unplanned so it threw me and I left the car unlocked I was in such a hurry. Got there - no parking - aaargh stress, swear etc. I jumped out and left Aj to it. So of course he found a spot almost straight away. It was quick this time! Last time we waited about 2 hours. Which I don’t mind [I seem to go into Zen mode once I am actually there], but nicer to be in and out.

This time I saw Mr Renninson. My beloved surgeon. Dr Hong had sensibly done a runner. Mr Renninson ate a lot of Christmas dinner I think, as he is looking a tad portly [strange what you notice!]. He marched in and the first thing he said was 'your CA 125 is 6'. So casual! SIX??? I was so pleased I almost fell off the bed, knickers or no knickers! As for Jones, well I would love to have a photo of his face at that moment. Really that’s when you know how much someone loves you - the total relief there was shocking.

Anyway, Renninson did the physical exam [NOT as thorough as Hong, but I won't bore you with the technical details and I am sure he knows what he’s doing]. He then pronounced: "right, you’re ok, you can bugger off". What? I had a million questions! And what was an eminent surgeon doing saying 'bugger' anyway? I managed to remember one, and had him in fits. One of the girls in the group we have started on Facebook [marvellously named by our Tracey; ScAaaarrrggghhh!! Tissue – heh heh] told us all that when they do the full hysterectomy / oopherectomy, the vagina then becomes like a sock. It's not attached, and could be yanked inside out if they didn't sew it to other things!! Yuck. What a thought.

I was very sceptical of this, but promised the girls I’d ask about it, and so I did. Renninson’s face - hilarious! I am sure I was his tea break 'spazzo patient story'. He told me in no uncertain terms that that was not true. His final words were: "that’s a load of bollocks". Ok, don't mince your words there R! He was obviously on a roll that day. Full of cheeky remarks. Apparently [and obviously] the vagina is attached to lots of other things anyway, so there’s no need for them to sew it to anything else. Good show! Right, off we went, great relief. To say the least. Rang Mumsy with the good news, text all my friends the same and off home.

Right - out of there and off to Bristol to stay overnight with my darling Godmother. Had a superb dinner, and a lovely evening - up at 5.00am to go to Frankfurt and she even drove in front of me so I could find the airport in the dark. Such a darling. What can I say - I was still delirious from the results the day before, so likely would have ended up in Brazil. Thank you sweetie.

And THAT was all nice!!

OFFS!!...don’t ask

Friday 8th January

well, not a very good day actually. I know everyone thinks I am really positive and strong. Well, don’t be surprised when I am not. I am just like you - normal - I also freak out at the slightest thing. Not spiders - no. But cancer returning? Yes.

I do try to be positive, mostly. But today was pretty bad. I am not sure if it was the circuit training or just a glitch, but all day today I have had horrible groin pain where the original cyst was removed [maybe ghost pain like when you have a leg chopped off? god what a thought] and terrible low back pain. I was trying to work through this, but had to jump up every half hour and walk around - not too good for the concentration! Work, jump up - work, jump up - brilliant! like yo-yo girl....

So. Walked around the kitchen [which is small!] crying and railing away. Then my Mum phoned and when I put the phone back, I smashed my head on a hanging candle thingy we have – right on my new scar!! Well, that was it - I screamed and cried and cursed at the top of my lungs. Good job we have a 300 year old house with very thick walls.

I think the DHL chap was a bit startled at my appearance today [he is used to me being in a dressing gown, but not used to a wicked hag who is rather abrupt] and let me sign without checking. Nice delivery by the way - it was 5 copies of the book I illustrated for my friend Isabelle’s Mum. So one good thing today. The books are so cute!! I feel rather pleased at having helped Jeannine realise her book. Jeannine wrote it - it’s lovely. I am so proud that I was the person to illustrate it.

Anyway. Back to complaining. Well, not totally. Andrew is feeling better [yippee! fantastic – he has been so ill, it’s great to see him back to a semblance of normality], so off he went and got me bottle of wine and a bit of shopping – good thing too, as otherwise I should have had to go myself – hmmm, bad idea. I am NOT feeling sociable at all. So that was very nice.

But I also feel bad, as one of my dearest friends brother is having terrible problems. Life threatening, and horrible. I think of him every day, as I know that just like me, he must wish that his life were normal – and that he was better. I AM better, so I can really sympathise. He is on constant treatment [painful and unpleasant] and his family are always wondering. So, we all send him our best wishes and thoughts...Nelson, be well soon.

And [just so you know I am not perfect - er, doh] I spent all day today crying. I think it’s the ‘Check Up Thing’ - we trundle along for 3 months [ideally] not thinking about cancer; then suddenly we have to think about it, as we have to have 'The Check Up'. Which is great, as we have 3 months more of being cancer FREE afterward, IF everything is ok when we go. Hopefully. But also not so great, as it reminds one of where we actually ARE. In the land of: 'Oh yes, you may have 5 years to live' or 'you may not'. Oh that totally fucks up your head. And no, I am not apologetic for the obscenity - that’s all there is to it. Try it - you’ll see.

Oh and thank you everyone for NOT saying 'it’ll be ok' – that would really be infuriating. I know that’s the ‘thing’ to say – but actually, it’s not – the ‘thing’ to say is 'I HOPE everything will be ok'. But even so. Thanks to everyone who 'thinks' everything will be ok – I hope so too. I really do.

back to normal?

Sunday 4th January


So, I did feel better the next day! :o) Onward and upward...

Well, Christmas is now behind us once again – not the best one I’ve ever had, with Aj being so ill, but still a nice break [and a nice duck!]. But we are really going to have to try and arrange a ‘proper’ holiday at some point – away from the house, the cold and the bills! This is the worst thing about us both being self employed – every time we take a break, it costs to get someone to run the shop, and I worry now about needing to keep my holiday days in case I need them for some idiot reason. No paid sick leave, no easy ride. BUT saying that, we had a break, so we can’t complain. Some people didn’t stop work at all.

We were talking about the madness of the UK with regard to holidays – suddenly it isn’t the ‘Christmas Season’ anymore – it’s the ‘Holiday Season’. What? hmm...interesting...Anyway, best not go down that road! And of course now that Christmas is over, it’s SALES, and DIET and get FIT. Then it’ll be Easter – eat tons of chocolate, then diet and get fit again...oops, then it’ll be Christmas again...like a manic merry go round of hard selling of just about anything. Bah. Oh, and humbug. Why not?

But of course I am being sucked in this year – I shall be there tomorrow, jumping about in the exercise class at Tedburn, and down to the slimming class on Tuesday if I am not hauled away with a cardiac arrest from Julies class. The difference being, I am not doing it because I ate to much stuffing over Crimbo – I am doing it to try to regain my self esteem. Which hit an all time low last year [so strange that it’s already ‘last year’!]. But it’s slowly and steadily creeping up again. Five months out of chemo, so better get sorted I think!

I am starting to realise that yes, actually I should be pleased with myself. We had a right SOB of a year, but we’re still here, and still together and on the up. And I am getting a little more normality every day. I have gained a fabulous network of AC girlfriends in addition to my family and friends. I have managed to cope most of the time, and remain positive. A hard one, but I’ve done it. Amazing, as if anyone had asked me before I got cancer, how I would cope, I would have said I would NOT have. Well, well, we learn something about ourselves every day – it’s great to learn I am stronger than I thought.

Tomorrow I am off for my blood tests in preparation for my 2nd 3 monthly check up next week – my state of mind is odd, as I am not nervous, but I am agitated. I can’t seem to concentrate well, and everything seems a bit irritating. I don’t feel like talking to anyone, yet I feel like babbling away like a maniac sometimes. Claire’s right – we need to find a way of coping with the run up to the check up, that doesn’t involve violence upon our fellow men ;o)

I have lots to ask Dr Hong – why do I have those pains in my tummy, why are my joints so agonising in the morning, why are my eyebrows falling out again – oh, and what about the ligatures [cheers Stace heh heh]. And a few other things of course. Will the questions ever end? Can I know enough or do I know too much? Some of the AC girls don’t know much – I am not sure if I could cope with that. Anyway, eight days to go. Which I shall try to fill up with work and my new good intentions...