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? ;)

Jeremy 'H'unt

So. I am never up to date with the news, as I never watch TV. I hate TV. Every time I DO watch it's either something that makes me feel like slightly killing myself or killing at least 12 other people. So I don't watch it. And the radio is just as bad - so my 'News' is garnered either by posts on Facebook or [if I feel really interested] by a Google search [of posts on Facebook] of what's happening today.

Subsequently, I was not 100% aware of the Saatchi Bill Fiasco. Until I had an email from Ovarian Cancer Action. I am one of their Voices, so possibly I SHOULD  be aware of this kind of thing. Well. I am now! And now I am Fuming!!

Why? Because some foolish man - Jeremy Hunt to be precise [Hunt?? Really? ok…], has stated that 'cancer already has a cure'. So we don't need the Saatchi Bill. Well, well! I totally missed the news headlines about that little miracle! Stupid man!! IF cancer has been cured, then how is it that there are still so many of my friends that are dying?? DO let me know Jeremy won't you?

It's astounding that a modern man can be so completely and  moronically out of touch. The treatment for ovarian cancer has not changed in the last 45 years. Oh, and DO correct me if I'm wrong! Thank God that we didn't have a 'Hunt' when Faber was trying to create a cure for cancer - imagine that! Hunt would have crushed chemotherapy and - oh joy! I and thousands of other cancer patients would now be dead thanks to his lack of foresight. Innovation is the only way forward you foolish man.

Do you think, Jeremy, that the women that Farber tested chemotherapy on in the 40's were like you? No. Of course they weren't. They were women who knew that if they didn't try something new - they would simply die. And dying is not an option for cancer patients - in OUR minds, survival is the only option. You make us sick [well - sicker]. And patently, you wish to REALLY make us sick, as in making us die - due to lack of CHOICE. We have to have a choice here - the facts being that IF there is a doctor who has a reasonable treatment, tested and tried in the lab - it should be OUR choice, as cancer patients, to allow that doctor to test his new and innovative treatment on us. NOT YOURS. IF we are at a point in our treatment that none of the traditional [as in chemo] tried and tested treatments will help, WHY is it that we should not be allowed to give permission to a doctor to trial his innovative treatment on us? WHY is it it YOUR decision?

Who do you think you ARE to decide for women whether or not we can live? Who do you think you are to decide that someone who has studied our disease should not be allowed to try to help us?

Why is it that you think you know what is best for women with Ovarian cancer? You have never had it. And never will. Do you think that if perhaps your wife or daughter had ovarian cancer [God forbid such a thing], and were at their very last choice, that you would not wish to have the help of an INNOVATIVE doctor - whom could perhaps save her life?

I truly believe that in that situation, you would definitely change your [at the moment] ridiculous and thoughtless point of view. IF there is already a 'cure for cancer' then DO share. I would love to tell the friends I have that are fighting this disease. I am sure it would make their bloody day to know.

"It has been reported that Jeremy Hunt at the Department of Health announced last week that it would object to the bill as there was "already a cure for cancer".

Lord Saatchi’s Medical Innovation Bill is simply helping doctors innovate new treatments and cures for cancer and other diseases. Why has it been refused? HOW can you object? How could anyone object?

Please. Share this information. Get people to see this. We deserve better than Hunt and his inane refusal. IF I were to have a recurrence, I would desperately want the choice of innovative treatment - the existing treatments we have are limited, and one's body can become immune to them. And the cancer cells can too.

Do NOT let Jeremy Hunt limit your choices. And by doing so, limit your life. Share.

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!

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.”

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.

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!

another life - another fund raiser

I am sitting here with tears running down my face. On Sunday 31st, Easter Sunday, my friend Laurel died of ovarian cancer – we knew each other for some time..she joined my little FaceBook group a long time ago. We went through lots together. She fought very hard…and it’s only just sunk in that she’s dead. Here she is with Di, another friend who was killed by ovarian cancer – Laurel would kill ME if she saw me post this pic – but I love it. She got so thin after this.

On Easter Sunday I held an event at the Bar Venezia at Exeter Quay. Saturday, we went down and helped Wonderful William of Claremont Marquees to set up the full size marquee they lent me for the day [get that!! amazing!]. Without the marquee, the day would have been a lot less fun than it was!

Sunday I woke up early, as I needed to be down at the Quay to ‘organise’ everyone. Before I left, I checked FaceBook. I saw posts all over the place about Laurel. I read them and read them and couldn’t believe my eyes. Then I saw a post by Kim, and I believed it. And I felt so sick. So, so sick. It was like someone had stabbed me in the stomach. And I wanted to just go back to bed and cry. But I couldn’t. I had the event. Then I became angry – and remembered why I am raising these funds. Because this shit shouldn’t happen! Laurel has two very young daughters. And now they have no mother. Because we can’t cure this disease.

So. I stomped off down to the Quay. And was rewarded with a glorious sunny morning. And masses of chirpy people. And free cake and coffee from Kitty at Exeter Cycles and Cafe…and the day went on.
We FROZE. We really did. It was so cold. But the event raised over £900 – mainly thanks to the raffle and the live music. It would have raised over £1100 – but the evening band charged us £180…and didn’t tell us until the night…grr. Oh well!

But in the afternoon, I had Mark Travis, Peachy Farmer and Jay Tamkin – all of them absolutely brilliant. And so kind to give their time to the fund raiser – none of them charged anything!! We had a good day. It didn’t rain. The FH spent his time selling raffle tickets and freezing his butt off.

The venue was kindly donated by Medhat of the Bar Venezia [who is merrily selling his chairs to raise MORE funds this week!]. Thank you Med.

This is my favourite picture from the day – Peachy Farmer – Mark Travis – and me. These people were so happy! They really helped me to get through the day without bursting into tears.

Photo: Sally Ewin

And of course, the girls supported me! Elaine came down – bloody marvellous – she raised funds and never stopped laughing all day. I imagine it took three days for her to recover – and she brought the lovely Helen…and Barb and Wendy appeared too. Seeing them was a serious test of my ‘Do Not Cry’ rule for the day.

So the event was a success. I thought about Laurel all day, and imagined that she had sent me the sunshine.

We raised £950 – not even enough to pay for one session of chemo. BUT a lot of money nonetheless.

Thank you so much everyone who supported the event by buying raffle tickets if they couldn’t come, or by being there on the day; I really appreciate your support.

If you’d like to donate, please click the link below.No amount is to small.Thanks.
x

http://www.justgiving.com/sandhy-cycles-Cuba

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 :)

2013

Far too much rambling going on here on this blog…but I wanted to say how grateful I am for a year so far where the worst thing that happened was I have had [and still have!] a virus. Coughing my guts up! But it’s the first time for years [literally] that we’ve been able to just worry about the usual things. Like coughs and colds.

And like how we’re going to lose the 3 kilos we gained from stuffing our faces with too much cheese and biscuits at Christmas!

Anyone with cancer who is reading this – have hope. Sometimes it takes ages, but sometimes things DO turn around. But it doesn’t just happen on it’s own unfortunately. And there’s lots of battering along the way usually too. But eventually, there will be a light at the end of the tunnel. I was diagnosed with stage 3B in 2008. Not a lot of hope of living more than 5 years – but I HAVE.

So far, so good.

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....

brilliant breast cancer advert

yes, we are still here….

lots of us – cancer survivors – trying to be ‘normal’. Oh that’s so never going to happen is it? I am now ALMOST at the 5 year deadline. February 2013 I will have been diagnosed exactly 5 years ago. Amazing, sad and scary what can happen in 5 years. Some things you never recover from. Some of those things are nothing to do with cancer at all.

But a cancer diagnosis can wreck your life, and the lives of those around you. Simply through misunderstandings – through people just not ‘getting it’. And why should they? If you haven’t HAD cancer, it’s impossible to understand the impact it has. Psychologically and physically.

But also amazing, fun and brilliant too! Incredible how many wonderful people I have met and things I have done. My treatment finished in August 2008 – so for me and my cancer team, the ‘five year deadline’ is August 2013.

My life, and my husband’s life,  were both devastated by my cancer diagnosis – I lost my freelance contract because I couldn’t travel, and went from Mrs Prada-Handbag to Mrs Cleaning Chalets-For-A-Living. Oh scrubbing floors was such a joy. Not. I went from earning a rather nice wage to earning the ‘minimum salary’ or less? For the maximum work I might add.

But at least I COULD work. I was and am, so grateful for that. Many people couldn’t have done what I could do at that point. Not because I am better than them in any way – simply because, physically, it was extremely demanding, and physically, I could do it. And again, I was lucky, as I was able to take a circuit training class, and eventually beat the physical weakness following chemo.

I also went from ‘lots of’ friends to ‘different’ friends. I went from being one kind of person to a ‘different’ kind of person…according to some…the mortgage, pension and sundry other things all went by the wayside.  Life became a game of credit cards.

I am so grateful for the fact that I am now back to running my own freelance graphic design house. Mad hours, mad everything – but wonderful after 4 years of struggling, networking and wishing…I am finally getting back on my feet. So, cancer – up yours!! I WILL beat you. You bitch.

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.

and why am I so idle?

I know. Blah – sorry about not posting. I AM alive! AND kicking! Doing another of these mad cycles next year – 400km across Cuba this time. Uff.

Life is chaotic – I'm sure you all have the same problem. Going to do this, going to do that – in a minute; after I do THIS [which is urgent] and after that. Everything is URGENT – particularly in the world of print/publishing. People seem to think that they can give you a [publisher / word / Coleslaw = CorelDraw] file one day, and that, as a graphic designer you will magic it to be 500 printed fliers within two days…well. Never gonna happen. But what DOES happen is the graphic designer gets totally stressed and calls about 90 printers, the printers go bonkers and send demented quotes and the client – well, they go out for lunch and enjoy a nice glass of Chablis and a salmon fishcake…

Which is precisely what I did today! I am usually a non-luncher – which is to say I normally eat something over the keyboard and quickly at that. Today however, I went straight from a client meeting at 9.00 to an exhibition [such as it was] at 11.00 – in between I did an 'urgent' car sales advert, found my cats and applied some makeup. Ugh. Frenzy for a person with the residuals of chemo brain.

Then, after the 'exhibition', a friend of mine, whom I went to said exhibition with, said we should go to lunch. I nearly said no, but then had a wild moment and said yes. I am so glad I did – what a delightful change! We sat in the window of the hotel, had a drink apiece and a light lunch. Met the friends charming son, and planned his future :) It really made a nice day.

Thanks Shaun for that – some little things can make your whole week different. And another absolutely fabulous thing – one of my clients MIGHT sponsor my event t-shirts! Getting on that tomorrow, but seems he might pay for production if his logo is all over the back – bring it on! Logos of whoever – who cares? ..if they generate funds? bring 'em on!!