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 …

Happy Christmas? Oh yes…

I really don't like Christmas. It sort of sucks. Everyone being all 'happy' for no good reason. I lost both my lovely Dad and my sweet father-in-law round Christmas. I was diagnosed with cancer just after Christmas. I had a massive scan-scare last Christmas. So - actually Christmas for me? It's crap. I get sideswiped by sadness.

I will be sitting around doing something, then BOOM I am almost in tears. Or totally in tears. Just memories; thoughts of things shared in the past…just missing people. Missing the missing people.

Mostly my Dad - he liked a Real Ale at Christmas. He liked Stilton like I do, and the dark meat on the turkey like I do - and dark rum & raisin chocolate. And so on…tut, I am so like my father, so I am constantly reminded of him. Which is mostly a happy thing, but some days - a very sad thing.

But this year has been interesting and amazing. I did the 400km cycle across Cuba [brilliant - but torturous!] - I have now raised over K12.5 for research - I am very proud of this! Plus I have a cupboard full of cycle medals - of which I am also proud.  I never EVER thought I would get a medal for anything!

And - we have a new little grand son…I honestly didn't think I'd live to see this Christmas. To actually be here to meet Joseph? It's incredible. Here he is with the very first Christmas gift of his life…and it made me cry to actually buy it - because I was so happy to still be here to do this.

This year has been a catharsis for me. And this post is to say thank you. Thank you to everyone who has helped me get to this point. A point where I can actually now start to plan for the future [fingers crossed]. I know - it sounds insane. But until now I have been thinking 'wtf - I'll probably die before I finish [insert anything here]' - but it seems my mind has caught up with my healing body. Now I have plans!!

The garden needs an overhaul. The house does too - everything became frozen in time when I was diagnosed with cancer. Not so any more. It has taken over 5 years, but I am finally getting with the program. But even so, I still touch wood for every little thing. Expecting something to go wrong.

So ~ thank you to everyone who has helped me. Thank you for the little things; my Mum donating to Kate instead of me, when we didn't think Kate would make the minimum amount for Cuba. Medhat, for donating his restaurant for an event that raised over £1000 even though it was FREEZING cold. Peachy Farmer for playing at that same event - they were absolutely amazing! Claremont Marquees for giving me a marquee…Liz for hosting a brunch that raised a fortune; Lindsey for raffling one of her paintings...on and on...I could fill the entire internet with a list of people who have been so kind. But I won't. You all know who you are. And you all know how grateful I am. And you all know you have my heart in your hands.

KBO then. As they say! Until the Ride the Night eh? ;)

Cuba. And things

This is a long overdue post! The Cuba cycle was amazing - hard, but still, it should be hard. People sponsor us in the expectation that we will do something in return. That is what we promise. To cycle 400km in a foreign country so that they will sponsor us. And really - we did! We cycled each day in 40 degree heat and 90% humidity. Everyone was completely out of their comfort zone. You could NOT train for this in the UK.

But I am proud to say that I cycled every single sweaty kilometre! Much to my amazement. I really didn't think I'd trained enough. But patently I had, as I didn't end up in the bus, apart from at the stops, where I was leaping in with gay abandon to get my hot and sweaty self under the air conditioning vent!

We had to drink non stop and we had our heads soaked every afternoon to counteract the effect of the terribly draining humidity. For some reason I was lucky and it didn't affect me all that much - and I had crisps! SALT!! Very important. They do not have crisps in Cuba for some reason.

Cuba itself is stunning. Greener than the UK, and the people much more friendly.  The landscape is beautiful - Cuba is the island of landscapes; rolling hills, mountains, valleys and beautiful bays. And we cycled through them. Cursing the flats, not the hills. We were so glad of hills, as they gave us down hills - and a bit of a breeze.

The same day that I finished the cycle, I called the FH. He was so pleased for me - but at the same time he had to tell me that he was flying home from Grenada, where he was supposed to be having a relaxing break, to be with his father. Harold was in hospital and very, very ill. That day, I was out in a purple car with Helen. And I was so grateful that I was with her. We simply carried on. Helen understands loss. Even then, I knew we would lose him. It was heartbreaking.

tickled pink? not really…

Below the picture is a guest post by Joanne [pictured below], a breast cancer survivor who has something she'd like you to understand.
…just so you know…no-one is particularly 'tickled pink' if they've actually had breast cancer. I don't think I'd be very impressed with a 'Tickled Teal' campaign for ovarian cancer awareness either! Good grief - so, read on!

October, traditionally known for Halloween, Autumn and harvest festivals, is now known as Breast Cancer Awareness month or 'Tickled Pink'.

I have no idea who came up with Tickled Pink but I seriously would like to bash their faces in. It's quite obvious, as with most things to raise awareness of breast cancer, e.g.: Facebook status to do with bra colour, handbags, gestation periods - that these people have never had to go through breast or any other cancers.

I don't get offended by many things but this offends me.

The strange thing is, because you have gone through it, your friends think you will automatically sign up to this shit and then they get all defensive when you set the record straight.

There was a time when I would go around buying Tickled Pink stuff thinking I was doing my bit for breast cancer awareness (and let's be honest it's everywhere in Asda throughout October) and not really give it much thought. Then BANG! 2 years ago I heard the words "it's breast cancer" well feck me, doesn't your perspective change then.

One mastectomy later, a 6 inch scar where there used to be a breast, surgeries, more scars and I can tell you it certainly isn't pink, it isn't fluffy and it damn well isn't funny.

Then I got to thinking about Tickled Pink, just how much of the profit of all the products sold actually goes to breast cancer awareness or cancer research? Not the whole lot I would hazard a guess, the supermarket will take a cut, will it be gift aided? Now the sheer volume of products sold means the donation will look huge, but not as huge as if everyone donated what they would pay for these products directly to BCC or cancer research - the amount would be phenomenal.

Please don't buy into the crap, it's a supermarkets way of getting you to buy products you normally wouldn't so they make more money out of the misery that breast cancer causes and all they do is wrap it up with a pink and fluffy name.

I'm a survivor. Don't turn October pink in my name, donate straight to breast cancer care or cancer research or sponsor an event. That's how to make the biggest difference. There are plenty cancer charities out there. Put your money where it will be most effective, and instead of changing your Facebook status to a bra colour (really offensive if someone has no breasts), change it to one that says "For breast cancer awareness month I have donated £XXX to BCC or cancer research".

Thank you,
~ Joanne

Dear Boris?

Possibly not the best start to a letter – not sure whether to address it to Dear Boris, Dear Mr Johnson or Dear Mr Boris Johnson. Mr Mayor? Hmm. So, Dear Boris seems simplest! ‘Yo Boris’ just seemed rude. Bo-Jo just seems…well…let’s not go there eh?

Anyway – Mr BJ Mayor Type Person! We need and would really appreciate your help. In 2008, I was diagnosed with ovarian cancer – the really crappy kind that sort of tries it’s best to kill you as soon as possible. BUT, I did the chemo thing [nuked the little suckers], I did the ‘omg I have no hair’ thing. And I did the ‘wth? I am very scared’ thing after treatment. Cancer does the most peculiar and irritating things to one’s head. But I am now doing the Survivor thing. Bring THAT on! Oh – and the cyclist thing. Lycra? Moi? Good Lord…

Anyway – onward and upward to the Now.

My husband decided [in his wisdom] to get me to sign up for a 400km cycle across Kenya once I had recovered. I signed up in a moment of madness in 2010 [after a couple of glasses of fortifying Oyster Bay]. Since then, I have never looked back. Having cycled 400km across Kenya in 2011, including the Rift Valley, I am now cycling 400km across Cuba in October this year.

These cycles are organised by a woman called Ann Frampton. Ann is a teeny weeny anti cancer bomb – the word ‘inspirational’ is overused and worn. But in this instance, it’s the only word to use. Ann is truly our inspiration – she climbs up and down Ben Nevis – she’s cycled across India, China, Kenya – she’s stormed through the desert burning her feet. She has encouraged literally thousands of women to join her cycles and treks to raise money and awareness for these three charities. Ann is a cervical cancer survivor herself. But that does not define her – she is an incredible person, doing incredible things.

But ‘Ah yes’, you cry – ‘lot’s of people are doing this kind of thing’. And you would be right! [of course – you’re Boris]. But our next challenge is interesting. For you.

I know you support cycling. So – read on young man!

We are doing the very FIRST women only cycle through London at night. It’s called the Women v Cancer Ride the Night.  We will cycle 100km through London to raise funds and awareness for Ovarian Cancer Action, Jo’s Cervical Trust and Breast Cancer Care. We will stay awake all day, cycle all night and curse the very idea of it on the afternoon after we finish. BUT – we will have done something incredible. We’ll have raised lots of money. And we’ll have raised awareness of the symptoms of all three cancers. Which means we’ll have saved at the very least – ONE woman’s life. And we will totter about on stiff legs for a week afterward. Chuckling all the while. Because it will be hilarious!

There will be 2000 women on this cycle. And we would like your good self to lead us out. Boris and 2000 women. How can you resist?

Oh, and if you could bring Arnie, that would be such fun ;)

Please get in touch – either through this blog by making a comment, or facebook or twitter. Or, answer Ann’s letter, which is winging it’s way toward you as you read this. Or call Ann on 0845 408 2698! Your People could talk to her People!

Thanks for reading – we’re looking forward to hearing from you!

7 weeks, 2 days, 1 hour and counting!

The Kenya crew, plus Kate and Rachel.

Yesterday we did the Great Shakespeare 100km challenge ride, as a sort of training exercise for Cuba. The FH decided to give it a miss this year, so it was just Kate and me driving up to Stratford on Saturday afternoon for an early Sunday start. Missed him being there, but he must have had prescience! What chaos…

We hung the bikes on the back of the car, Kate left her dogs with various sitters, we stuffed all our belongings in and trundled off for what should have been a simple 3 hour drive up. We were so well prepared!! Ha.

On BOTH sides of the motorway there were burning vehicles [incredible], so the resultant traffic jam added 45 minutes to the trip. It was like being in a Mad Max film…at 2 miles per hour. Thank goodness we packed snacks! The bike rack became a bit rackety, so we pulled off, sorted it and and set off again. Two minutes after getting back onto the motorway I felt like someone was stubbing our their cigarette on the back of my thigh! More pulling off [rather FRANTICALLY] only to discover that a rather large red ant [apparently this was the Police speed enforcement ant] had crawled onto my dress at the sort-out-the-bike-rack stop, and was merrily biting the hell out of me! Suffice to say he died and we sallied forth once more into the breach!

Stopped for a coffee at Strensham Services – OMG!! All the Walmart people were there! 8 coach loads of them! Suffice to say we made a very swift rush to the Costa coffee, where we were served something rather resembling mud in a giant cardboard soup bowl. Rushed out into the car park, and in the frenzy to unlock the car before we were beamed up, I and managed to pop the boot, to which the cycle rack is attached. To open and slam it we’d have had to remove bikes and rack…never going to happen at this point. So we drove the rest of the way with the ‘your boot is open, fool!’ light on. By this point we actually didn’t care. We finally arrived at my friend Loraine’s lovely house in the Cotswolds at about 8.30. In one piece, astoundingly enough…

We had a fab dinner provided by Loraine and a catch up and all got to bed at quite a reasonable hour. Up at 6.00 to leave for the start, toast, coffee and bananas for brekkie then Loraine backed into me in the drive! Luckily just a scuff [bring out the T-Cut] and after a bit of manoeuvring we were off.

Met up with the Crew at the hotel where the cycle starts, everyone was rather jolly, and we were all looking forward to the days ride.

LITTLE DID WE KNOW! For some reason the day was torturous. Cycling into a head wind most of the time, which sort of takes the fun out of it. Instead of whizzing down hills, one cycles down them...at 9 miles per hour. Frustrating. And tiring.

Plus 5 million miles of wheat fields and cute cottages make one a tad disoriented…being in the Cotswolds for too long makes one feel like one has taken a hallucinogenic drug…

Kate and I decided to do The Hill – Larkspur...it’s horrible. No idea what we were thinking. It’s a 21% grade as far as I can remember. I was going so slowly that when a car came down I fell off into a hedge and have some lovely scratches to show for it. Thanks very much to the woman who raced by me shouting ‘get out of the way’ – which I tried to do and fell backwards. But she didn’t stop to see if I had died or not. Probably just as well, as I was a tad peeved at that point! Could have been messy…

Note to Cotswolds people – it’s FAR too cute there, and your roads are terrible! Full of holes and strewn with gravel. And cyclists heh heh

Kate keeled over at the second feed stop, a victim of stuffing far too much cake and bread at the first one. So we lounged about there for a while while she recovered, smoking and drinking coffee, supplied by the amazing ladies who, every year, are there smiling and supplying fab grub to over 600 cyclists.

We finally lost the will to cycle after some fellow told us there were only 4 km to go, when actually there were still 12 to go! Met up with one of the other Cuba girls and we had a Team Spazz Out, then a mad jelly baby scoffing attack, girded our loins and got going – to find we only had another corner then it was 400 yards to the finish! Total disorientation.

But even with all the delays and chaos, I still beat my time from last year by half an hour, so it’s not all bad! Plus we DID drive for 8 hours, sleep for 5 and then cycle for 6. I’d say that’s a good training day, as we were still functioning this morning!

The Great Shakespeare Cycle is the best organised cycle we’ve done. This is the third year I’ve done it. I forget how hard it is each time. It’s so well organised, you get your time chip, excellent food, go out like the Tour and the marshalling and signage are brilliant. I’d recommend anyone to do it, plus it raises funds for an excellent charity.

If we do it again though, it’ll be a full weekend job, so we can rest before and afterward! Only 7 weeks to go until Cuba! So next weekend we will be mainly cycling up and down hills! In DEVON!

funDraising – it’s not ‘fun’ – the ‘d’ stands for desperate

I am starting to think that people assume that we are raising money for the fun of it.  Not me; my friends and family have been wonderfully supportive of my efforts – but recently I have been trying to help my friend and fellow Cuba cyclist, Kate, to reach her target. I have sent out emails to various business groups we have both been/are involved in – and the result has been A Resounding Silence from the majority of the recipients. Not all – but most.

And it’s  A Resounding Silence that makes me cross. And VERY disappointed. And very upset. It’s enough to make you cry. We are not fund raising for ourselves! This is not about personal gain. We are not fund raising because it’s ‘fun’. We are fund raising because the situation is desperate.

So it’s upsetting when people who you KNOW could afford a fiver, well – they just don’t. And yes, I know everyone has their own charity – but it doesn’t help me feeling that a tiny donation – a pound even? – would be kind. We are supposed to be a team – business networking is supposed to create that. Well. Pfft! To say I am disappointed with the Business Network ‘support’ is a huge understatement.

Check this out – a woman dies EVERY TEN HOURS of ovarian cancer…every ten hours! FFS!! IT’S ENOUGH TO MAKE YOU SCREAM WITH TERROR!

The treatment of ovarian cancer has not changed much in the last 10 years. This is not a good thing. EVERYTHING else has changed in that time. We have mobile phones that we can see each other when we call – we have electric cars; we have microwave ovens; using a machine-brain interface, researchers are making it possible for otherwise paralyzed humans to control neuroprostheses – essentially mechanical limbs that respond to human thought – allowing them to walk; the Eye of Gaia, a billion-pixel telescope will be sent into space this year to begin photographing and mapping the universe on a scale that was recently impossible; The Mars Science Laboratory – by August 2012, the next mission to Mars will reach the Martian surface with a new rover named Curiosity focusing on whether Mars could ever have supported life, and whether it might be able to in the future.

I ask this – is it more important to see if Mars ever supported life or is it more important to make life that we have already, less agonising when we pass or less agonising to survive??

Women who die of ovarian cancer do NOT go “gentle into that good night". They go kicking and screaming – they don’t want to die. Usually they are far too young – in my experience anyway. They leave behind children, husbands – life. But it takes them. It takes them and it does it in a hideous and painful way. Death by ovarian cancer us NOT a gentle passing.

So please. PLEASE help us? No donation is too small – yes – you have heard it all before, but every time you hear it, it’s meant. Every single charity DOES need and deserve our help. But in this instance, we are asking for just a little donation. EVERYONE will either suffer cancer themselves in their lives or have a dear relative or friend suffer it.

Kate’s justgiving address is HERE – please – if you can – as I said; no donation is too small.

Thank you. And thank you for reading too – and my apologies for the rage, but I feel so strongly about this…

women rule!

Between freelance work, which is buzzing merrily along at last [fingers firmly crossed about THAT - look! I even placed an advert! - my self confidence is at LAST reappearing.] And fund raising for Cuba and waiting for my check-up and trying [with limited success I might add] to TRAIN for Cuba, I haven’t much thought about an update on here. But due to some gentle nagging from various parties, here I am again.

I think the most important thing to the majority of followers of this rather lazily updated blog is that I am still NED! I had my check-up on the 11 June – it was the last 6 monthly check up I ever hope to have. In August, I reach my ‘5 year all clear’ [scary!] so my next one is in a year. Changing over to an annual check up is strangely disturbing. Like letting go of the hand that is supporting you. One wobbles a bit at first. I am still wavering between relief and panic. Mostly panic. Which I will get over. I still have a large risk of recurrence – but I also still have my amazing cancer team at the RD&E. So. Not thinking too much about that.

In other news, I have made it to the semi-finals of the Venus Awards! Devon page here. My category is sponsored by The Old Bag Company. For the Inspirational Woman category, there were 307 nominations. I am so touched to have made it through to the semi finals! Amazing. I am not quite sure how many semi-finalists there are, but at the end of the day, just making it through AND being nominated at all is such an honour. Thank you Rita and sundry other friends for nominating me!

And I am cycling! Training for the 400km across Cuba – I even have a new bike, kindly sold to me at a stupid price by my fellow cyclist, Kate. This weekend coming, we will be sallying forth to do the 60 mile Force Cancer Charity ride. I am convinced I haven’t trained enough, but hey ho – we will do it! Check out the shirt design by Chameleon Design! This is Kate and me at the training weekend in the Cotswolds. Good fun!

Other good news is that I have beaten my fundraising target! Thank you SO much all of you who went to brunches, bought raffle tickets, appeared at events and donated raffle prizes. It does mean a lot to me, and I note every single donation, no matter how small – every little helps! Thank you all!

The Adventures of Ovacome in London - with pics!

The Ovacome tour of London! This is great – at last, someone is doing something about really getting a co-ordinated Awareness out there for ovarian cancer.

To help spread awareness of the first World Ovarian Cancer Day, Ovacome have been out and about shooting pictures with Skye Brackpool of Brighton Togs.

Here they are with David Lammy bearing the logo at The Houses of Parliament. 

From left to right:  Ann Wiltshire, Lyn Howlett, Louise Bayne, David Lammy MP, Elizabeth Harrison, Ruth Grigg and Mary Raftery.

And here is Mary Raftery waving the logo herself! And wearing an Ovacome t-shirt [get in touch with Ovacome to get one of these]

And more banner bearers…Sisters Lyn Howlett (left) and Ann Wiltshire. Go ladies!

The Houses of Parliament. again with Brid Carr…

and, last but not least: Elizabeth Harrison with Big Ben too…and a nice big poster, which you can download here on the Ovacome website. Stick it on your car – on your house! Plaster it across your briefcase on the way to work – help us raise awareness of this very first World Ovarian Cancer Day! It could save a woman’s life…

If you also want to help support World Ovarian Cancer Day then you can hand out leaflets, put up posters and send in pictures of activities taking place where you are. Posters are available to download from the Ovacome website. Send the pictures to Ovacome! They’d love to see them, and we’ll plaster you all over the internet :)

Pictures will be posted here and on the Ovacome facebook page here: https://www.facebook.com/ovacome

Also, see Ovacome on twitter: @Ovacome

And me on twitter! @l_optimiste

All photos are copyright Skye Brackpool of Brighton Togs.

the Adventures of Ovacome in London!

Ovacome did a tour of London today to help spread awareness of the first World Ovarian Cancer Day. They have been shooting pictures and handing out ribbons at various popular and iconic sites around London; London Bridge, Westminster, Green Park and the Transport Museum, Covent Garden.
If you want to help support World Ovarian Cancer Day then you can still hand out leaflets, put up posters and send in pictures of activities taking place where you are. Posters are available to download from the Ovacome website

Pictures will be posted here and on the Ovacome facebook page here: https://www.facebook.com/ovacome

Also, see Ovacome on twitter: @Ovacome

FIRST EVER WORLD OVARIAN CANCER DAY!!

This is amazing! Breast Cancer Awareness month is always at the same time, all over the world – ovarian cancer awareness month is at different times. So we never seem to achieve quite the same ‘solidarity’ of cause that has been achieved by the breast cancer girls.

Well, tomorrow is the first time that there will be a Worldwide ‘day’ for ovarian cancer awareness!

Wednesday 8^th May 2013 is the inaugural World Ovarian Cancer Day. Charities Target Ovarian Cancer, Ovarian Cancer Action, The Eve Appeal and Ovacome have come together to support this initiative, working together to raise awareness with the UK population.

Globally, 27 ovarian cancer organisations from 17 countries around the world have united to help educate their communities about ovarian cancer and its symptoms. For women living with the disease, and their families and friends, World Ovarian Cancer Day will build a sense of solidarity in the fight against ovarian cancer.

Ovarian cancer is diagnosed annually in nearly a quarter of a million women globally, and is responsible for 140,000 deaths each year. Statistics show that just 45% of women with ovarian cancer are likely to survive for five years compared to up to 89% of women with breast cancer. In the UK, 7,000 women are diagnosed each year, and 4,300 women lose their lives each year. The UK has amongst the lowest survival rates in Europe.

A spokesperson representing the charities, said: “Realising a World Ovarian Cancer Day is remarkable, and we’re delighted that the UK is taking part. Uniting organisations around the globe with a focused message for the first time ever in support of ovarian cancer will get the attention that this disease needs. When people join together great things happen. Look at the success of breast cancer over the last 15 years – see what they have accomplished – it is time for ovarian cancer now.”

For more information on World Ovarian Cancer Day visit: www.ovariancancerday.org
Facebook: www.facebook.com/WorldOvarianCancerDay
Twitter: @OvarianCancerDY
Pinterest: @OvarianCancerDY

And watch this space for some photos of Ovacome in action today!! Coming soon!

World Ovarian Cancer Day: 8th May 2013

May 8th marks the first World Ovarian Cancer Day where organisations from around the world will unite to educate their communities about ovarian cancer and its symptoms.

Ovacome along with other patient organisations from around the world came together at the initial meetings to discuss the common issues surrounding ovarian cancer and are please to be a part of the first global ovarian cancer awareness event which we hope will build a sense of solidarity in the fight against ovarian cancer.

How can you get involved?

Join Ovacome for a tour of London on Tuesday to help spread awareness of the first World Ovarian Cancer Day. They will be taking pictures and handing out ribbons at various popular and iconic sites around London.

They will be meeting at 10.30am on Tuesday at the Ovacome offices and plan to head to London Bridge, Westminster, Green Park and finish at the Transport Museum, Covent Garden.

If you are free for a couple of hours then join them when you can and Ovacome will also provide Ovacome t-shirts for volunteers to wear and materials to hand out.

If you are unable to join Ovacome in London and still want to help support World Ovarian Cancer Day then you can still hand out leaflets, put up posters and send in pictures of activities taking place where you are!

Going Viral:

As this is global campaign we want to share our participation with the other global organisations involved so please help us to spread the word by using social media sites to inform others of how you are supporting the first World Ovarian Cancer Day. You can send you pictures or post them to Ovacome’s Facebook and Twitter pages so they can share them with their wider community.

on Facebook!

Use #WOCD #WorldOvarianCancerDay on Twitter to join the conversation.

http://www.ovacome.org.uk/

the Venus awards!

Well! I have been nominated for the Venus Awards 'Devon Inspirational Woman'. Startled [to say the very least] - and quite chuffed! I can’t think I've ever been ‘nominated’ for anything before in my life. How flattering is this? Very.

So, I've been looking into this award thing properly [as at first I thought it was spam!] - initially I thought it was some kind of joke - but it’s not.

*IF* I were to win this Venus Awards category, it would allow me lots of latitude for publicity etc and raising awareness. As you all know from my constant blathering on here, I am on a mission to raise both funds for research and awareness of the symptoms of ovarian cancer. This would give me access to LOTS of business women! Which would give me the opportunity to share a lot of awareness. Bring it on.

Why not go to this web site and nominate an inspirational woman for this award [you need to select 'Inspirational Woman' from the list of Categories]. 

2013 Women v Cancer cycle from Havana to Santa Clara, Cuba

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We're all gearing up for the Cuba cycle now that the weather has improved a bit. Training has begun in earnest! The Facebook page is full of cycle rides and average speeds and worries. I thought I'd better update the actual map [I forgot to do it when I updated the itinerary].

This map of the Cuba cycle includes the bus transfer from Jaguey Grande [+/- 1.5 hours] to Cienfuegos to stay overnight. If you’re interested, the 'actual' cycle maps are on Mapmyride, split into three. Day 01 to 03, then we transfer by bus, then day 04, then days 05 to 06, as we have another bus transfer on the morning of day 05.

Best get out on the bike!!

Day 01 to 03 MAP 01

Day 04 MAP 02

Day 05 to 06 MAP 03

here we go again!

Today was the first ‘proper’ training cycle for the Cuba ride in October. I’ve been to a few spin classes, but even though they are brilliant for stamina, they are nothing compared to a road cycle. No wind, no rain etc. Check out the Cuba Creature in my Camelback – I really need a name for him. He is going to be photographed all over the place, a bit like Where’s Wally.

The FH and I cycled down to Exmouth and back, roughly 23 miles, at below average speed [for us] of 11.5 miles per hour. But, not too bad for a first run, as we had a head wind all the way out, and then we had it all the way back plus rain. And cold. My hands were freezing! Horrible – but I am glad I did it, as I have been very concerned about my ability to do Cuba. I almost got to the point of thinking I wouldn’t do it at all.

I have been fund raising like a maniac [probably driving everyone I know completely insane] and as always, I’ve had amazing support. At the moment, I am at 86% of my target, which is £5060.00 – just ten pounds more than I raised for the Kenya cycle. I’d really like to beat that! But even if I don’t, I’ve raised over the required minimum of £2900.00; at the moment I have raised £4,366.30. So now all I have to worry about is the training!

Doing this second fund raiser has been difficult and exhausting. I also have a job, and as a freelance designer, I am constantly glued to the computer. So social networking is a breeze, as I do it in between jobs…but ‘actual’ fund raising is pretty stressful. Organising people always is. BUT, it’s gone well! And, my friend Lindsey is doing an auction of one of her amazing paintings to raise funds too! Check this out – a beautiful painting she did whilst convalescing from surgery. The auction is on FaceBook here: https://www.facebook.com/events/266147843521944/

Going back to the worry of doing Cuba – it has taken me 4 years to get back on my feet regarding my little freelance business. One year after diagnosis, my ongoing contract ended – gave me an excellent lesson – do not have only one client! Since then I have been networking, and now I actually know local people – even road names! I have built up a little client base, and they are all lovely. So I don’t want to risk losing them. But, I have to train.

So, weekends are now Designated Cycling times, and I am hoping to fit something in during the week if possible. At least after today’s cycle I remembered that I CAN cycle! And I WILL do Cuba.

On other things; I don’t have my check-up appointment. Shriek! What used to happen was one would make the appointment on the way out from the last one. Nice and simple. The sweet reception lady would give one a choice of times and dates. Fill in the card…boom, sorted. Then you could just forget about it until it was due.

NOW, some prat has changed the system  [I’m hoping they have a headache for a year actually] and we have to wait for an appointment to come through the post. What?? So, when will it come? Where is it?? I am having nightmares about missing it, dreams about calling and asking when it is… I need to know NOW. So that I don’t have to worry about it. Thinking I may call and ask – but it’s so unnecessary! The old system worked perfectly. Bah. Additional stress. Fools who changed the system. Slap to the head those people!!

So, mad check up attacks aside, please buy a raffle ticket! I am holding an on-line raffle here if you are on facebook: https://www.facebook.com/events/128509787338341/

If not, to buy tickets, please just donate to my JUSTGIVING account. Tickets are £2.50 per strip [five tickets]. I will email [please leave your email with justgiving – they do NOT share it] message or post your ticket numbers on the event wall and enter you in the draw. The draw will take place on the 6th May. The winner will be notified by email/ phone or through Facebook.

THE PRIZE is two nights accommodation with breakfast at The Waterman’s Arms Country Inn, Bow Bridge [dogs are welcome too!], kindly donated by the Waterman's Arms. PLUS!! A meal for two with a bottle of wine kindly donated by Scotties Electrical. This is worth a *minimum* of £250.00!! So, if you fancy a weekend away in Devon this year for the price of a raffle ticket, get buying.

 

Thanks for your support, and good luck!

it’s THAT month again

Ovarian Cancer Awareness month. The disease is Ovarian cancer [clue is in the title] and the PLAN is to make women AWARE OF THE SYMPTOMS. Because many women aren’t, and as a result, they are misdiagnosed, and lives that could be saved – well, they’re lost.

This sucks.

So, ladies, get your sensible heads on. We have a responsibility for our own health, so check out the symptoms. Yes, it’s a bore. Yes, it’s a little frightening when you read them. And YES you SHOULD read them and think ‘yikes, I have that!’.

They are remarkably similar to IBS. They are easy to mistake for everyday tiredness. They are subtle, but also, not so subtle, because they are NOT a norm for your body. Listen to your body – if any of the following are persistent for 3 WEEKS OR MORE, get your little self to the GP. ASK the question. Most of the time, these symptoms are nothing to worry about, but if they are PERSISTANT, then get them checked out.

• unexplained BLOATING
• FEELING FULL quickly or loss of appetite
• pelvic or stomach PAIN
• needing to pee urgently or more frequently than normal

The chances are it’s nothing serious – but then again, it could be. So, be sensible.

Research has found that over half of ovarian cancer cases are misdiagnosed. According to Target Ovarian Cancer, up to 500 lives could be saved if the disease was diagnosed much earlier.

“Early diagnosis is at the core of our £750 million cancer strategy and plays a vital role in our aim to improve cancer survival rates and save an extra 5,000 lives every year by 2014.

This is why last week we launched the Be Clear on Cancer campaign to raise public awareness of the key symptoms of ovarian cancer and encourage those with the symptoms to visit their GP.”

– DEPARTMENT OF HEALTH SPOKESMAN

So – get with the program!!

On a more cheerful note, I have reached my £3000 target for the Cuba cycle! I have a fabulous event coming up on Easter Sunday, so I am now going to try to beat what I raised last year. If you would like to help, please donate here – every penny counts!!

Thanks to everyone who has helped me! Especially my Bella :)

whatever words I say…

will not help…

this post may be a bit demented. Today has been a bitch. BITCH!!

today I have been thinking about the day my friend Gaynor died. Of ovarian cancer – it simply grabbed her, shook her and didn't let go. It was like a monster. It IS a monster – but on this occasion, it was more monsterish than usual.

She fought like a tiger. And she really did; she did all the right things – green tea, the 'right' food, lots of exercise etc. She was a tiny little person with a ton of energy - she wore amazing shoes – she gave wonderful advice. She was a good friend to me in the short time we knew one another. 

What the fuck happened? Oh. Yes. Ovarian Cancer happened.

I am amazed – more than a whole year has passed since she was alive?? No. But – yes. Today was odd – I spent it thinking of her death – usually thoughts of Gaynor are of her life. She made a huge impression on me, helping me with my confidence with just one sentence.

But today my thoughts  were of death. Gaynor's death. And how unfair things can be sometimes.

louder than silence louder than bells…

Laurel – where are you my friend?

Laurel with Diane :)

why the hell not?

I have been walking around my head a little bit this evening. Having a ‘cancery’ attack.  Feeling at once sad and happy – cross and so very, very grateful. But sad. People have asked me why I am doing yet another one of these fund raising cycles. Why? Ah…million dollar question. Firstly, why the hell not? It raises money to save lives. It forces me to get fitter [well, the FH forces me actually]. I am NOT a cyclist really. I struggle. But it’s worth it! People who have had cancer really need to try and be fit.

And. The funds go to research. For ovarian, breast and cervical cancers. Of course, the most important one to me is ovarian, not only because I had it, but because cervical and breast cancer are pretty much out there. Women KNOW about the symptoms, thanks to the massive efforts of the breast cancer girls, and certainly Jade Goody brought cervical cancer to the forefront during her battle with it. Plus there are tried and tested tests for both. NOT so for ovarian cancer.

So. Ovarian cancer? We are still struggling to get women to know the symptoms, and the treatment today is as near as damn it the same as what it was 30 years ago. Incredibly.

Another reason is the death of so many friends – killed by ovarian cancer – because we don’t know enough. We don’t know how to save them. Diane Davis Waller, Gaynor Hall, sweet Jayne Armstrong – Tammy Woodward, BJ Gallagher, Patty Higgins, Thelma Hugget, Kelly Godfrey, Jo McGowan…on and on…they live in me, but I have Survivors Guilt – a ridiculous thing! I KNOW all of them are jumping for joy for me, that I am still here to bitch and moan and laugh and cry – but still. I miss them, I miss the hilarious conversations we had, the laughs. The cries. They were my friends. So it breaks my heart that they are gone. And yes, I feel guilty that I am still alive – hence, I feel I need to pay back for that blessing. 

So I do the ride for them too. And for the women I know who are still struggling with treatment – long days of chemo, terrifying phone calls about bad results…different treatments for recurrence. Hateful. I need to do something for them.

And no, it’s not a ‘jolly’. It’s HARD. We spend over a year begging for money. We train – which is difficult to fit into busy lives. We all have jobs, kids, husbands etc. THEY are the support team. Thanks to them, we can do this.

And we cycle up bloody mountains! But the camaraderie of the other women gets us up them – the whole thing is an incredibly emotional experience. It brings one to tears when someone that you know that can’t afford it, puts five pounds into the pot. The messages on my justgiving page almost always make me cry. People are incredibly generous and kind.

So, Sceptics – I am doing this cycle because I want to. Because I want to honour my friends. Because I NEED to give something back. Because I can. And some of my friends can’t. So I’m cycling for them.

If you go to Costa for a coffee and cake, it could cost you almost £6.00 – could you have one at home, and simply donate the fiver to this amazing cause? Just once. Miss Costa for a day…it’d mean a lot! Costa don’t actually need the money – we do.

Thanks. Very much.

Please donate here if you can?

...and breathe....

This week I am a VERY happy person. And also a slightly scared person.

Happy because 5 years ago this week, I was diagnosed with ovarian cancer Stage 3B. Spread to my bowel, omentum etc etc – so I did not have the best prognosis. I was given a 70% chance of survival. And now, the Five Year Thing! I can’t believe it.

I remember when I first met Emily, and we spoke online for hours. And we were both convinced we were going to die. For me, the miracle that we are still here to do awareness articles, blog posts, TV interviews and random other stuff still amazes me.

We are so lucky. I notice this EVERY day. Particularly this week. So, GO us! We are constantly trying to raise awareness, trying to spare some unfortunate woman what we went through – hopefully. And if we're misquoted [which we ARE constantly – some journalists don’t seem to speak/understand English at all, even when it’s written down for them!], at some point, we won't be - and if we're exhausted with it all, which we are sometimes, somewhere, someone is more exhausted than we are. So it’s worth it. No matter what.

For me, really, my ‘5 years’ will be up in August though, as that is when I finished my treatment. But saying that, this week is certainly a landmark for me. Here I am. Five years down the road, still alive and kicking. Gotta be a good thing! I didn’t expect to survive this long, and I am grateful for every day. So; very happy.

The scared bit is that I have recently discovered that in stage 3 ovarian cancer of the type I had, most recurrences occur AFTER the 5 year mark. What? How is it that I didn’t know that? And now that I do , I can’t ‘unknow’ it. Which is irritating. Better I never knew! So. A bit scary. But I think I will just carry on as if I don’t know. No point worrying about it any more than I usually do!

And all of this week I've been thinking I had a melanoma on my scalp and was about to be diagnosed with a ‘New and Interesting’ type of cancer. No sleep at all. I made an appointment with my lovely GP for next Wednesday  [he is a busy man] and thought that I would be able to calmly wait it out. Unfortunately NOT!

Three sleepless nights later and yesterday I gave in to the panic attacks and made an emergency appointment with my *AMAZING* GP and [yay] it's NOT cancer...just some scabby head wart thing that apparently everyone gets? – [a worry wart?] and nothing to worry about. I was so relieved that it seemed like I was breathing pure oxygen. I was babbling. Running about in manic relief. Talking too much – being too cheerful.

I expected the worst – my cancery brain was saying that as I was diagnosed this week 5 years back, I'd be diagnosed again now – with a cancer that also kills people. Just a different one. Google – no! My brain is traitorous at times! According to my doctor, this is perfectly normal. I have spent the week with cold sweats, heart stopping moments and terrifying breathlessness. So, very happily, I bow to the knowledge of my GP. The thing on my head is benign – excellent; I can rebook my hairdressing appointment!

so, happy cancer-versary to me!
...and breathe....

Updated Cuba 400km cycle itinerary 3-11th Oct 2013

Oops! So, after cycling 400km across Kenya, I have now been press ganged into cycling 400km across Cuba!
I have to raise a minimum of £3000.00 to qualify to do the cycle.
If you would like to help me raise that for Ovarian Cancer Action,  Jo’s Cervical Trust and Breast Cancer Care,  please donate here - the smallest amount really does help. Thank you.

Cuba itinerary REVISED – 3rd to 11th October, 2013

See here for a map of the Cuba cycle.
DAY 1
Flight: London Gatwick Airport to Havana [Jose Marti International Airport]
9 hours and 30 minutes – see customs regs here Arrive late afternoon. Transfer [approx. 1 hour] directly to the Hotel Villa Los Cocos in Jibacoa Beach. Event briefing and buffet dinner.

http://www.nickdemarcofoto.com/

DAY 2 
5 hours cycling [approximately 70km]
Jibacoa Beach to Matanzas.

Early start – 6.00 [not too bad!], bike fitting after brekkie [taking my trusty saddle!], and a warm up.

The first days riding takes us along the coast road before turning inland and UP HILL [no doubt an undulating one…], through the beautiful Yumuri Valley. The valley roads are compacted earth through tropical scenery and palm trees. We will stop to regroup before crossing the main Havana-to-Varadero road, onto the Old m

ain road, which is now a sleepy backwater. We will continue along the mostly flat valley floor, stopping for lunch at the Rancho Gaviota, a typical country restaurant.

After lunch we cycle along tarred roads to Matanzas. UP a bloody great 800 metre hill. Hoorah! The itinerary says that at the top we ‘regroup’ – read that as ‘collapse in a heap’.

Then we cycle off to René Fraga Park and enjoy spectacular views over the Bay of Matanzas. We then cycle down to the city and our final 8km stretch along the bay to our overnight accommodation at Hotel Canimao.

DAY 3 
5 – 6  hours cycling [approximately 85km]
Matanzas to the Peninsula of Zapata

Today we cycle through Matanzas and out onto the Carretera Central,  which was once the main road connecting Cuba's capital city to Santiago, which will give us a feel for what was once Havana. Then on to the Santiago Road. The road is now a secondary route and although busy by Cuban standards, it remains remarkably free of fast moving traffic. [Oh good – so we won't be hit by speeding juggernauts at any rate…]

The undulating road takes us through farming communities and we share the road with horse drawn carts, vintage American cars and vintage Soviet tractors.

We will travel through what  was once prime sugar cane land. About 20km into the ride we will reach Triumvirato, where a monument commemorates a slave uprising, reminding us that Cuba was one of the last countries to relinquish slavery.

Triumvirato, Matanzas - Carlota, leader of a slave rebellion

We trundle on through the citrus groves and stop after about 60km at Pedro Betancourt, for some lunch. Then onward for 25kms to Jaguey Grande. Here we halt for the day and transfer [+/- 1.5 hours] to Cienfuegos to stay overnight.

DAY 4 
6 - 7 hours cycling [approximately 96km]

Cienfuegos to Trinidad

The most challenging day of the cycle. The road son begins to ‘undulate’ [we know this word of old from Kenya – it translates roughly as ‘goes up. and up. and up…forever…’]. We join the main road linking Cienfuegos to Trinidad with the Escambray Mountains on our left. This road ‘undulates’ for a further 40km. We stop for lunch at La Vega. [we fall over at La Vega]…

Then a relatively flat 30kms to Trinidad, then some short sharp hills bring us into the town. We turn off the main road and head toward La Boca, a small fishing village. The last 10kms to our hotel are along the coast.

DAY 5
6 hours cycling [approximately 77km]

Trinidad to Sancti Spíritus

Early start, to ensure time to visit Trinidad. We transfer by bus for an escorted walking tour of the city [what? no bike??] We finish the tour at the Plaza Santa Ana [ah – there they are] and collect our bikes again. Today is sugar cane country. We cycle from Trinidad [woohoo – tobacco country!], one of Cuba's most charming Colonial cities. The road undulates past fields of cane, once Cuba's most important crop. Trinidad and the surrounding area was extremely wealthy in the 18th and 19th centuries, thanks to sugar production. However, once slavery was abolished, sugar production dropped and Trinidad's importance declined. It is now a sleepy provincial town full of live music and beautiful Colonial architecture.

After lunch we continue on to Sancti Spíritus where we stay overnight.

DAY 6
6 - 7 hours cycling [approximately 82km]
Sancti Spíritus to Santa Clara

Our last day of cycling is relatively easy compared to the previous days. We leave Sancti Spíritus and go back to Carretera Central.

More undulating roads. Hmm.

Picnic lunch along the way, sounds grand – then to Santa Clara to regroup for the final stretch. Santa Clara is famed for being the location of the most decisive battle between Batista and the Revolutionary Forces when Che Guevara and his men ambushed a train full of soldiers loyal to Batista. Che's successful ambush effectively defeated Batista's forces and resulted in the dictator fleeing Cuba the following day. A spectacular mausoleum commemorates Che's outstanding contribution to Cuba's revolution.

Our finish line will be at the Che Guevara Mausoleum.

Then: Cuba Libre time! Chuck the bikes at a random truck and run away as fast as we can to our hotel transfer bus!

DAY 7 Santa Clara to Havana

After brekkie, we drive to Havana. We have lunch in a local restaurant before taking a city tour which will include a visit to Revolution Square with the iconic images of Che Guevara, Camilo Cienfuegos and José Martí. Then we take a guided walking tour of the Old Town of Havana.

In the evening we have a celebration dinner to recall the highlights of the challenge we have [hopefully!] just completed.

DAY 8
Return to London, unless one has extended one’s flight.

This morning is 'free' [lots of packing and running about!] then we check out of the hotel at around midday before leaving for the airport and flying home to the UK.

From experience in Kenya, this will also be a very emotional day – many friendships are created on the cycle and it seems awful to part – but we don't really! We keep in touch – and these friendships are the kind to last a lifetime. Some of us are staying on for a few days to really ‘see’ Havana, or go to the beach resorts – I am staying on in Havana, so boot sales for raising the cash,  here I come! Too good an opportunity to miss, so I will afford it. The sad thing is that the FH won’t be there to enjoy it with me.

But he’ll be there to cheer when I get home :)

1. Pinar del Río
2. Artemisa
3. Havana
4. Mayabeque
5. Matanzas
6. Cienfuegos
7. Villa Clara
8. Sancti Spíritus
9. Ciego de Ávila
10. Camagüey
11. Las Tunas
12. Granma
13. Holguín
14. Santiago de Cuba
15. Guantánamo
16. Isla de la Juventud