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? ;)

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!

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…

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

View Larger Map

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

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?

Cuba Cuba Cuba!

Ooo! Excited! It looks like it’s going to be hot, wet and a tad muddy in Cuba! Not to mention bumpy! This video is Fern Britton when she did her Cuba cycle – and this is what I am doing in October! Having watched this, I am now quite excited, as it looks like rather an adventure. Probably ought to get the bike out and start training…plus remember to pack plenty of plasters!

Here is the itinerary for this amazing charity cycle. If you’d like to help me raise the funds to qualify to go, please donate here? I need to raise a minimum of £2900 by August – watch this space for event details. Think salsa and golf!

All the funds I raise go to research and awareness for Ovarian Cancer Action, Jo’s Cervical Trust and Breast Cancer Care. Thanks!

 

oo looky!

Just recently I’ve noticed a lot of people making lovely jewellery to raise funds for the Cuba cycle. We are raising funds for Ovarian Cancer Action, Jo’s cervical Trust and Breast Cancer Care.

This is my favourite so far though! [sorry girls!]. It’s a Bag Charm that raises funds for Ovacome. Ovacome is a charity founded on personal experience. The founder, Sarah Dickinson, was herself an ovarian cancer sufferer, and wanted other women to be able to access clear, reliable information, support and advice. The work they do today still reflects her vision. They provide support and information for women affected by ovarian cancer, their families and friends. It is free to join.

To buy one of these charms, you need to go to Facebook, HERE. The page is called Blossom, and the charm is only a tenner, of which 100% of the money goes to Ovacome. Nice!

In March, it’s Ovarian Cancer Awareness month – why not buy one as a gift that helps raise awareness, donates money for research but is a totally scrummy present at the same time?

October

"Look at this shit" – and I quote from here because I totally love this post.

October is breast cancer awareness month. PLEASE try to avoid the 'pink' crap, and instead promote actual/real awareness by telling your friends how to check their breasts [men as well] and how to give practical support to women & men who have / had breast cancer.

Researching this is easy. Get your ass on Google – first lesson: do NOT tell cancer patients to 'be positive' – just a warning, so you don't end up with a hot waffle iron to the face ;)  They WILL be positive…in their own time. But it takes time. And it isn't helped by [well-meaning] people TELLING them they SHOULD be positive. Quite often, you just can't. Losing your hair, going through painful treatment,  gaining weight through steroid treatment and knowing you may die are quite off putting when it comes to the 'being positive' stuff.

Breast cancer is NOT about 'pink' trowels. It's not about pink shirts/shoes/hats/dollies/M&M's or Kentucky Fried Chicken!

It's about pain, loss and devastation [none of which are particularly pink!]

DO help by being proactive and spreading a sensible message. A colour or an obscure Facebook message about where you keep your bloody handbag / hat / heart / whatever the fuck, does NOT define, explain or help people to be aware of the symptoms of this disease. And the saddest thing is that even by being aware, it doesn't help – breast cancer can strike even the healthiest people – it just does. Sort of like any cancer really. BUT by checking, you may be diagnosed early, which can help your survival rate enormously.

Please promote awareness of the symptoms of breast cancer by telling women and men HOW to check for it. Simple yes? You'd think so. There is an awareness pack here. It has a lot of 'pink' stuff all over it – ignore that nonsense and READ the information.

There is an excellent blog post here, all about why 'pink' is so totally ridiculous [do read it – very interesting] I particularly liked the bit where he says:

Being aware of the hazards of shoving a spindle up your ass and lighting your clothes on fire while smacking people in the face with a hot waffle iron and singing “Kumbaya” in a falsetto voice… well, you get the idea. Prevention is the key reason for awareness.

Oh, and if you read the post AND the comments; it's apparent that 'pink' is totally sickening to the majority. Pink? No. Remove it from my sight please. Information? Yes – bring it on…

I am very afraid of breast cancer. It is closely linked to ovarian. Happily, I had a physical check up recently and I am fine. Just waiting for the scan results now…waiting. It's really not good for the 'positivity' factor. So; no-one best be telling me to be positive – 'ware that waffle iron!

need some advice?

This is the story of my dear friend Gaynor Hall. The girl with the glorious smile.

Gaynor died of ovarian cancer not too long ago and is sorely missed. This book is written by her sister, Jill Herring. It contains advice that could be very helpful to women in treatment. I haven't read it yet, but I've downloaded it to my trusty Kindle. I will read it when I have taken enough calming breaths.

Description:

"This is a true story based on Jill and her late sisters experience of ovarian cancer. It is a guide about the things they learned along the way, the do's and the don'ts, some helpful hints, questions that should have been asked and questions that should have been answered. What to do and when to do it, when is 'enough' and when to look elsewhere."

awareness

I am raising money for ovarian, cervical and breast cancer research. Please donate if you can – every penny really does help. I need to raise a minimum of K3 to qualify to do the 400km across Cuba in 2013.

And noooo – this is NOT a 'jolly'! Getting up at 5.00 in the morning to cycle up and down hills all day for 5 days on the trot; staying in a different place every night [it's sort of: pack, cycle, unpack, pack, cycle, unpack - daily!]…is fun, but it's tough. As it should be, or how could we ask for sponsorship? Rest assured - we do earn our sponsorship money :) So if you can, please spare a bit of cash for my Cuba fund? Thanks!

Last weekend we did our third 100km cycle of the year in the Cotswolds. It turned out to be 67miles! It's a brilliantly organised ride for the Shakespeare Hospice, and the Kenya girls use it as a 'meeting up' ride and for training. It's through incredibly picturesque countryside, and has some MONSTER hills. But, stupidly, I didn't train well this time, so I really didn't enjoy the cycling as much as usual. BUT we made it and got our next medal! If the FH hadn't been with me I probably would have sloped off into the nearest pub after 30 miles. My knee was agony, and I had lost the will to pedal for the last 10 miles.

This is before the cycle, quite chilled at the Youth Hostel – I was slightly more frazzled AFTERWARD, as I'd had no sleep as well as no training. A lot of noisy Americans arrived home at 2.00 in the morning and proceeded to bellow merrily until 3.00. Happily, they went instantly silent upon a polite request from me. Impressive manners – I'm sure they thought they were the only people staying there? Who knows…I got about 3 hours sleep.

And here's a bit of fun – featured below with my fellow survivor, Michelle, in the Ovarian Cancer Action newsletter! A bit about the Kenya cycle. Another one of those where I read the text and thought 'eh? I didn't say that!'. I think I said far too much and they had to précis it to fit just some of my waffle in…

And here is another friend, Tracey [her blog is HERE], in the papers! I know we probably seem a tad tedious, banging on about cancery stuff – but if ONE woman's life is saved through her reading about the symptoms in the paper or in a newsletter or magazine, or seeing us cycling past in the middle of the jungle and wondering 'WHY' enough to enquire…well, that's gotta be good eh?