Tuesday 13 December 2011

confused

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

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

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

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

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

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

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

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

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

Friday 2 December 2011

a gift from my friend

This is such fun! My friend Anita made a little video of quite a lot of the girls who went on the Kenya Cycle – this is mine, made just for me! 
Her comment upon posting it on my facebook wall was: "I chose this song for the chorus...it's the bit at the end of this montage :0)" I am glad she said that, as the first sentence is something about being sick? But the chorus is:

"so I turn to you and I say
Thank goodness for the good souls
That make life better
so I turn to you and I say
If it wasn't for the good souls
Life would not matter...!"

It's by some band I have never heard of [this would be because I am an old fart and Anita is a youngster]. But I am really touched. Really. Thank you Neets.

 
 
www.justgiving.com/sandhy-cycles-kenya

Saturday 26 November 2011

anyway…

I'm not strong. Not at all – I just do things as they come along. And I deal with things the same way. As they come. Once they're done – that's it. They're done.

Why is that not the case with cancer? Is it because we are constantly TOLD we are at risk of recurrence? If I had never been told that, I am sure my life would be [if not simpler] at least happier. IF I didn't KNOW that ovarian cancer has a very high incidence of recurrence, would I worry quite so much? Perhaps not. Perhaps. Who knows? It's now a moot point. I KNOW it can recur. I KNOW the incidence is high. I KNOW I am at risk.

It's exhausting.

I did the Kenya cycle – as best I could. I am so pleased I did it – the women I met were and are unbelievable. I loved it! Imagine…3 years ago I couldn't cycle to the Exeter Quay!! [that's about 1 mile from my house!]. My life is different now because of that. Ann Frampton is amazing – she sets up the rides – her mother died of ovarian cancer and she survived cervical cancer – get on girl! She does wonderful things for awareness and fund raising. I would love to be her assistant….

Here we are at Faraja – me, Shaira and Ann.

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This week though, I am getting into the 'Fright Zone'. My reminder popped up in outlook – 'get the bloods done'. Next week. O.F.F.S! So I rang and made the appointment. Today. That in itself is an effort – it's like if I ignore it, it may go away. Well, it doesn't. It's taken me 3 days of reminders [grr] to get my butt in gear to phone.
So many times I have rung up at the last moment and had to have a mini cadenza to get fitted in [always my fault; but I always make the surgery appointment woman feel bad…and she always manages to fit me in. yay her]
Look at this – I look [and felt!] as fit as a fiddle! [fit as a fiddle? what is that anyway?] But, I do and did. WHY am I worried??

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and here I am [alive!] at the end of the cycle with Vicky. Must admit, we both look rather scrumptious ;) NOT! But we ARE triumphant! As we should be.

FB03 So. What? I stood in the garden this evening. Looking at the sky – it's so cold. And so black. And so BIG.  We are so little. I wished for my life without recurrence EVER – I wished for some normality. I wished for my life without bloody cancer at all. I cried. A lot. But I am not alone in this – I have the FH, friends, family. I have the girls on the face book group. But actually – we ARE all alone in this. Aren't we?

All alone…not just us – the cancery types, but the people who love us too. They are also alone – with their worries, their thoughts….no matter who tries to understand. No matter what anyone says – we are still awake at 3.30 on the morning…alone with thoughts of a horrible death…alone with thoughts of our loved ones deaths…it's hard.

But. And it's a big but. We have support. We have friends. We have understanding from some, if not all.

I am so grateful for that.

Here I am – with Lake Victoria! Amazing…

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Sunday 20 November 2011

a moment

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thank you for this photo Delyth……it brought back the memory of that moment.

And that moment is truly memorable for me. I had been talking to Michelle Shoulder. Sitting on the edge of a ravine. As you do – another 'survivor'. We had our moment there – we made Bronze!  We survived cancer, and we bloody well made bronze!

3 years ago I wouldn't have made it to the Quay….so. Chuffed to bits!!

the 400km cycle – entry 6

well, that was a hard day! after the chaos of being stuck in sundry rivers, we eventually got down to the cycling. Bearing in mind the 5.15 wake up…and the major stone throwing to escape the flood that put us back rather a lot time wise. On this challenge, time always seemed to be very tight!

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Like my chest. I was suffering from altitude and lack of smoking…I know. Sounds insane, but the less you smoke, the more you cough and I was smoking about 5 or 6 a day – amazing!

Last post from the Moleskine :

"I have a constant hacking cough and shortness of breath.The girls have rallied round and supplied cough sweets and Chest Eze [the latter didn't help at all]. The doctors are about as useful as a third buttock – to be honest, I am [at this moment, in my distress] not impressed. They must have realised we would suffer from chest / lung complaints due to the altitude, but they are rather blasé and I feel that they think that because I smoke, it is not serious. I KNOW it is, as I never cough from smoking. Ever. I don't draw the smoke into my lungs -  so I am quite worried about my breathing. But the other girls have the same problem, even Vicky is coughing – so I let it ride. Oh stupid decision!

The problem started when we were riding amongst the Matatus – we were literally stuck in a traffic jam – one that gouted diesel fumes at random intervals. I now appreciate the UK obsession with MOT's! Anyway, once we arrived at our hotel, we were both [Vick and I] coughing our guts up. I was given an inhaler by one of the girls [thank you!] but that didn't help. And because it didn't, I knew I had a chest infection – I sat waiting for the Chest Eze to work. It didn't [even though I took a double dose, against the manufacturers advice!]. I sound like an asthmatic. And feel like one.

I am so tired I can barely write [my scrawl becomes almost illegible here] just spoke to the FH thank God, and Vick managed to speak to Ollie and Grace – so we both feel a lot better. But today was truly horrible.

Girls at Bronze

It involved a 'bronze, silver and gold' challenge. Of course we all wanted to achieve gold. But the bronze section was so difficult that we had to call it a day. But we wished we hadn't, as the girls who achieved the gold told us that the bronze was the most difficult bit! Grr. We did the bronze in the midday heat [madness!] and it was so hard. So, I don't feel bad that I didn't get to gold. I just feel disappointed – if we'd known it was easier we'd have done it – but hey ho…we did what we could at the time. And we did well.

I am so proud if us for making the bronze stage – the hills were far more suited to a Tour  France pack than a well intentioned, charity fund raising ordinary bunch of women. The climbs were steep, the shade non existent and the sun was ferocious.

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BUT. The views were amazing and so was the team support.

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Sunday 13 November 2011

the 400km cycle – entry 05

OMG!! The rain came! It was amazing – sheet lightning and water everywhere. We were sitting upstairs, at the edge of the veranda, and had to run back and hide behind the bar as the rain was coming in in horizontal sheets.

Vicky and I had to be ferried back to our room by a lovely fellow with a large golf umbrella, very glad I was wearing Havaianas, as the water was inches deep. Quite exciting, as I love African storms. But of course, this caused a few little problems the next day! We were late for dinner, but not late enough that we didn't discover that we were getting up at 5.15 [what?!] with a 6.00 breakfast, then a coach trip out for an 8.30 set off on the bikes…with lunch at 2.30. Ho ho…NOT!

The dry river beds were rather wet. We got stuck, and Daniel had to give it about 4 tries before he managed to get the bus through. We were passed by some people in Safari land rovers – who merrily used our newly built stone road to go their jolly way – told off sternly by Carol for not stopping to help ;)

So that rather smashed our schedule for the day and by the time we got to lunch we were starved. But it was fun! The other rivers were flooded too, but they weren't as difficult as this one. Daniel was a star.

The cycling…well, will post later, tired of typing now!

the 400km cycle – entry 04

Back to the Moleskine…scribbled and lots of arrows which now mean absolutely nothing to me!

"This was a horrible day for me. 57 km. Doesn't sound a lot does it? That's because it isn't – unless the cycle is almost vertical. Although when I woke up, I was amazed not to be completely stiff and sore. I wasn't, but my legs did feel a bit like lead. Result! Astounded to say the least! My biggest problem has been with the adhesions, and Michelle, who has had cervical cancer [8 year survivor! go girl!] was having the same problems. Feels like one's gut is being torn in half. Pleasant! Not. Here we are [at yet another Equator sign!] looking rather jolly I must say. Check out those knees! [mine – not Michelle's!]

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Yesterday was very hard, the gradients were extreme [for me anyway]. I forgot about this [that's what the arrows were trying to tell me]. After lunch was a little disturbing, as Vicky and I did the last 4 miles through the village alone. We were surrounded by trucks, matatus, motor cycles – you name it, we cycled amongst it. It appeared to be rush hour. And the trucks and matatus have those exhaust pipes that stick out to the side. Fabulous for killing cyclists! Every time they change gear, a huge cloud of black smoke gouts out – and guess who was on the receiving end of it? Yep – us. Plus giant potholes. Arrived at Nyahururu feeling a bit out of sorts.

But this was more difficult, as the altitude really started to affect us. It's not high enough to make one sick, but it's pretty high. I was wheezing, and [much to my relief – sounds awful, but true] so were most of the other girls.

We did an EXTREMELY long drag today. It was unreal! We were stopping every few hundred yards to recoup. This involved stopping, eating jelly babies, drinking water, glaring at the soon-to-be-cycled-next-incline, cursing, bucking one another up and then cracking on. The heat was killing. We mostly got Cyclists Tourette's [you had to be there…] but we cycled up that hill!

We arrived at our lunch destination on the afternoon. Rice and meat buffet with salad and beans – good, healthy food as usual. For me, any food that is prepared for me and I just have to eat it, is great. And we sat outside in the sun of course, an added bonus. Lovely.

After lunch transfer 120km to Baringo a small village next to one of Kenya’s fresh water lakes. Over night at Soi Safari Lodge.

Getting there was fun – we crossed four [or five?] dry river beds. And one could see that they were flood beds…lots of stones and heaps of thorn bushes across the road. Our driver, Daniel, worked miracles [more miracles were to come the next day!] and got us there is one piece, but not without two of the women almost throwing up – the swaying, bumping and rocking in the bus was pretty radical. Lucky for me I have a strong stomach. I was just pleased the rivers weren't in flow. That would have been a tad complicated…little did I know!

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We arrived at the Soi Safari Lodge. It is delightful. Loved it [although some of the women were completely horrified – no idea what they expected?]. We shot straight into the pool and had our wine pool side, even when the rains arrived. Then the usual unpack, pack, dinner, sleep…

Vicky with the Crocodile Boys at the lakeside.DSC_0177

The glorious lake view.DSC_0174

the 400km cycle – entry 03

Back to the Moleskine again where my hand writing seems to have become more indecipherable every day:

"Ye Gods…up at 5.30! To cycle 99km! Yikes. Breakfast at 6.00 [my gut did not take kindly to this at all!] – fab buffet of all sorts of cooked things, plus fruit, bread, cake and coffee + tea. The coffee was AMAZING. Here we all are, I must say we look amazingly AWAKE!

day-01Out to start warming up at 7.00. A publicity shot with Safaricom, who paid for our cycle shirts. They were lovely – most impressed with us doing the cycle. And really INTERESTED. Hoping to get the shots the chap from the newspaper took.

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We cycled off at 7.30, stopping for breaks and to eat popcorn, crisps and biscuits every now and then, and most importantly to fill up with water. I've never drunk so much water in my life, and was very grateful for the Camelbak, even though it weighs a bit. Today was a rush, as the planning went slightly awry, and some of the girls were bundled into the bus to catch up to the rest. They were MOST put out about it, and un-bundled themselves as fast as they could. No-one wanted to be in the bus unless they HAD to. There were hills, and more hills. No WAY I am going to describe it other than to say it was UPward all the way. And hot. And exhausting.

Lunch was brilliant – our ground crew cooked it for us on Calor gas bottles. Then we had a visit from some cute little school kids so we could offload some of the TON of stuff we'd all brought for them. Eventually I think it was split between 4 schools instead of the original one which was planned. Thanks to everyone who donated kids things – they were delighted. They did a song and a little dance for us, everyone in wellingtons due to the rain. Here they all are shooting back to school, hopefully to get their little hands on some goodies!

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Second half of the day was gruelling [the first half was too, but I started to run out of hilariousness after lunch!]. The altitude started to give us headaches [lots of delving into the drug supplies we all brought] and the exhaustion was making us all very emotional. The hills were unbelievable, long hard elevations, and HOT. Africa is drenched in our sweat and tears. But we made it! But no amount of UK training could have prepared us for those hills.

We crossed the Equator quite a few times! The FH thinks they plant those signs randomly on the landscape to trick tourists ;)

DSC_0060 Thank God I did the training I DID do, or it would have been awful. Thanks to the FH shoving me out on the bike at regular intervals, I was astounded at myself, because although it was hard, I managed. And that's all I needed to do.

Tonight we stopped at Thompsons Falls Lodge. Again, long pre-dinner chat to buck us all up, great buffet meal and early to bed. Yet more packing, unpacking, losing things, finding them – REPACKING them – shriek! Never, ever mention the words 'duffle bag' to me again. Bloody horrific piece of luggage that eats one's belongings. Put out our cycle gear for the morning and collapsed.

Another 5.30 start tomorrow! groan."

At Thompsons Falls. Me, Michelle, Lou, Vick, Nicky, Maz [the maker of hilarious animal sounds],  Anita and Helen.

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The Falls before breakfast the next day.

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the 400km cycle – entry 02

Back to the Moleskine for this one too:

"The flight was, as flights are, interminably tedious. We were lucky, and had a seat between us [Sarah and I], Vicky in front of me and Helen 2 seats to my left. We had a a palatable dinner and all TRIED to sleep. With varying degrees of success. Mine being a 1 on the 1 to 10 scale.

Breakfast was a vile 'pastry' [pfft!] like a flat undercooked Chelsea bun – filled with  plastic cheddar cheese? For breakfast?? Ugh. Gross.

We arrived at Jomo Kenyatta Airport which has grown substantially since I was last here. We had a remarkably pain free passage through passport control and no bags were lost -  result!

We left the airport en masse to be coached over to Nyeri [4 hour transfer] once all the bags had been flung on the top in normal African style, with a big tarp over the top. Here's Daniel and Henk the Tank sorting that little lot.

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And some interesting bits of road on the outskirts of Nairobi! Yes, that IS a road…

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We stopped at a Curio shop along the way and had a cheese sandwich [?] and some coke. And I didn't buy anything!

<SAMSUNG DIGITAL CAMERA>DSC_0029 We arrived at the Green Hills, Nyeri with just enough time to fling our bags into our rooms, then race out again for a bike fitting, all waving sundry bike parts [seats, pedals, hooters…]. As soon as everything had been fitted, adjusted 10 times by the brilliant mechanics and we'd had a quick practise ride up a very vicious little hill, we were able to have a shower and get ready for dinner. Pretty stressed at this point, as we all worried about the bikes being different to our own [doh!]. I was worried about the different gear system, but needn't have. Amazing how fast you get used to a new thing if you HAVE to!

Nyeri is in the Aberdare National Park and Lord Baden-Powell is buried there. Some of the girls visited Baden Powell's grave, most of us shot up and down the hill and got on to the Getting a Shower part! Dinner came soon after, but we had a talk first – we were so starving by that point I am surprised there wasn't a mass stampede on the buffet.

Food was excellent [we did all manage a little foray poolside for a glass of wine along the way], and we were all off to bed by 9.30 ready for a crack of dawn [up at 5.30!] exodus in the morning. 99km cycling approx, with lots of hills and eventually we hope to get to an elevation of 2200m and check out the views.

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Here's the bed on our room – we missed the tray I think ;) There was another bed across the end of the room by the windows which I bagged. No mozzies! Yay!

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Saturday 12 November 2011

the 400km Kenya cycle – entry 01

Well. I did it it seems! I took a Moleskine with me, and for the first few days I wrote in it, then I simply gave up – exhaustion prevailed. Entries are scribbled here:

29 Oct 11 [in the plane]

"Can't believe it's here. We're going – in fact, we're gone! 4 hours into the flight and we're all very well behaved [considering there's a free bar]. I have Helen to my left across the aisle, and Vicky in front of me. So we make a little triangle.

The airport was a chaos of gibbering women, new WvC sweatshirts piled everywhere [thanks Lisa!] and a really festive air. Off to the bar with the lot of us, where we took over everyone's tables and generally caused mayhem. Then onto the plane.

Vick is in full film mode. I am in 'will I get ANY sleep?' mode, I am so tired but still buzzing away. More wine I think!

My trip up was ok – A303, a crash as usual, so a delay. But I still got to Fiona by 4.15 [this included getting lost in Slough! stress!!]. Fiona dropped me at the Virgin area at Terminal 3 [she was amazing – looked after my car while I was away, AND collected me after the trip! And she is a totally NOT stressed type, unlike myself – she actually single handed sorted out an entire traffic jam on the way home!] after some pizza and coffee at hers. Met her delightful little son too.  So – checked in, sat at the bar and took out a 2nd mortgage to buy a book at WH Smith.

Heard from the FH just as he was leaving for Spain, and we left just after – just after he called to let me know he'd arrived in Spain. Surreal. I wish I could call the Wild Things too! [more about THAT later]. Here we are at the airport – I have bags on my bags ;)

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So. Flight. We are in an Airbus! Hoorah! Civilised travel for a change – polite, professional air hostesses…room to move. A free bar – dinner that is actually FOOD…yippee! Even though we are in economy this is such a treat compared to the likes of Ryan Air etc – reminds me of flying years ago. Free socks! Woop!

After the free socks, we had some wine, then our evening meal. I am completely confused about the time. It's odd, as we are in a darkened plane. But most people are awake. Some are sleeping, but not many. We had chicken for dinner – with roast potatoes, Greek salad, piquant sauce and an 'interesting' chocolate dessert. Banana and chocolate? Ugh.

Virgin do not allow the electronic cigarette!  Which is rather a bore, as I have one and was relying on that to help me avoid tearing off anyone's head [8 hour flight – no nicotine – hmm] . I asked why, and it seems that if [a very stupid] person sees one being smoked they will think they can light up a real one. Nothing to do with them being dangerous or unfriendly or hurting anyone. So I had a few puffs on mine in the WC. No harm done and less chance of mayhem.

We have films in the back of the seat! Books to read, free wine and blankets – so why am I awake?? Whatever. I am so thrilled to see all the girls again. Get on."

Friday 28 October 2011

one day to go – thank you very much!

I can't believe it! It's tomorrow!! We have had a last minute change of itinerary, [the last night is now in a rather spiffy hotel overlooking the National Park – cool!] but that's it – we're REALLY REALLY going…I feel mildly hysterical at the thought! Breathe…
And as I probably won't be in touch whilst I am in Kenya [not much Wi-Fi available there], I just want to say a HUGE thank  you to everyone who has helped me to get to this point and raise so much money for these brilliant charities. £4850.00! Imagine…I was worried about raising the minimum £2800.

Everyone I know or have come into contact with during this past year, family, friends – even complete strangers have helped and supported me. It's been an amazing eye opener. People's kindness has brought me to tears on more than one occasion.

So thank you to everyone who has donated their time, their money, everyone who has encouraged me, everyone who has sent cards, called me to wish me luck and sent me quirky gifts, tweets, blog comments – you name it, it's all helped. I have my fab OAKLEYS [woop!] and THE most hilarious chrome Bugle bicycle hooter ever – it makes an unholy racket, so any lions will run away! What more could a girl need when cycling across the African veldt?

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And of course, the BIGGEST thank you has to go to the FH for all the support through training, fund raising and random attacks of hysteria. Thank you for not beating me over the head with my bike helmet!

And I am taking my girls with me on the back of my hoody for some help up the hills ;)
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Now just to pack the saddle, helmet and padded [and very elegant!] shorts and off we go. Feeling extremely trepidatious! Wish me luck, and thanks again!! I couldn't have done it without you all!

I imagine I'll have an interesting story to tell when we come home ;) Watch this space!

Sunday 23 October 2011

Jo

Today my friend Jo died. She had cervical cancer – a recurrence killed her. I have lost it completely, and can not stop crying. Her husband kindly took time out of his own grief to let me know this evening. So I should get a grip – he did. Why can't I?

This is a photo of Paul and Jo, taken by Karen. For me it says everything – it's 'Just Jo'…that sweet personality shines through, that happy confidence. I just love it.

JO Jo was a really lovely person. I met her through this blog. She commented on one of my posts ages ago, when I was still in 'omg I am going to die' mode. She told me not to worry, she had been in remission for years and I would be ok. And it helped me. A LOT. We chatted back and forth and eventually became friends on Facebook. There's a limit to how much conversation you can have in the 'comments' box…

She had a Fairy garden on FB. She would play it on her iPhone under the bedcovers when she couldn't sleep [insomnia seems part and parcel of cancer treatment – we 'watered' plants at 3.30 in the morning…]. Her favourite films were Jesus of Nazareth, Enemy of the State and Conan the Barbarian?? heh heh – get on Conan!

Then, on the 31 December 2009 she told me she had worrying symptoms and was waiting for results. It seemed like a urinary tract infection.  But sadly, it wasn't. After that we were more closely in touch, as I added her to the group on FB..Jo was our 'Honourary Member'. The only woman in the group NOT to have ovarian cancer – but not the only one who has had cervical.

Jo commented on a blog post I did [it was a special post for LIVESTRONG day.]

"I have been here for certain and I think it is an inevitable part of the process of coming to terms with how fragile, brittle and frightening life can be. When you get cancer you stare into the abyss. But I have gradually come to terms with it and feel less daunted about life these days. For me it was less about me dying, and more about what and who I was leaving behind. Frightened by how I would die, but not about actually dying itself. It all has to be sorted out in your head, and it can be lonely. No - it IS lonely. Without my faith and my family I don't think I would still have my mental health to be honest. With their love and support, I am stronger for going through it now despite all the darkness. Hugs X "

It says a lot – her comment. Even then, she was calmly accepting the inevitable. Jo was a very inspiring woman – not just because of the way she dealt with her cancer – her life was inspiring. She ran a business, she ran a household with a wonderful Son [has to be capitalised :) ] and husband [I know they are wonderful because she told me] and she had her Faith. But it was always her two men that she referred to first when she spoke of love and support.

Jo even managed her death well. "Frightened by how I would die, but not about actually dying itself."  Her main worry was leaving her husband and her beloved Son. Happily, Jo died peacefully. I am so grateful for that. For her husband and son, and for her. And [selfishly] for me too – I feel relieved that she fell asleep on Thursday 20th October and moved gracefully towards peace over Friday and Saturday before passing over at 5:30am this morning.

So. Goodbye to yet another friend. Rant? Yes, probably should. But I can't. I am so exhausted with death. So. No. No rant. Just a heartfelt plea to Someone, Somewhere to find a cure.

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The Kenya Cycle seems more relevant every day – these women would all still be here IF we had a cure! I would not be breaking my heart over Jo. And Gaynor. And Sweet Jane…my friends…

And yes Jo. You're right - it IS lonely.

A list in loving memory of my friends:

Jo McGowan
Gaynor Hall
Diane Davis Waller
Sweet Jayne Armstrong
Bj Gallagher
Patty Higgins
Thelma Huggett
Kelli Godfrey
Annie Prouse

We won't forget you! And don't worry girls – we WILL find a cure…

Saturday 22 October 2011

OMG!

I woke up this morning and realised that this time next week, I will [no doubt!] be frantically stuffing things into a bag last minute and wondering what I've forgotten. THUD goes the heart! There are 50 things I should have already done, but time just disappears, and half of them will remain un-done.

NEXT SATURDAY is CKA-Day – the Cycle Kenya Adventure begins!! Here's the itinerary and below is the [approximate] scary map of the ride…but it takes ages to load…

But today I am trundling off to the Salt Mine, then coming home to complete a logo design and try to get some drawings of egg cups done [with animals heads – cool], then out again this evening to wait tables. Then at last I'll be able to pay the £290.00 air and fuel taxes on Monday. I am beginning to rather look forward to the cycle as a rest. At least I'll have just ONE thing to do…get from Nyeri to Lake Vic…alive!

NERVOUS puts it mildly, but also excited – only one way to go, and that's FORWARDS!

You can still
donate here if you would like to help make a difference to research into ovarian, breast and cervical cancer. Thank you EVERYONE who has donated and helped me raise an amazing £4805.00!


Friday 21 October 2011

7 days 21 hours and 52 minutes to go!

What happened?? This cycle was AGES away…now it's next week! I don't feel ready at all, and yet I feel I can't wait to get there and get to it. I am going with a great bunch of women – they really are something. So we will support one another, and of course, it's always easier to achieve something as a team than it is to do it alone. That's the theory anyway!
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I HAVE trained. The FH has been a Godsend, in that he has been forcing me out, and because he's faster [grr!] I am always pushed to keep up with my short little legs. He gets little breaks to drink water and rest while he waits for me to huff and puff my way to wherever he is. I get to try [and fail mostly] to guzzle water and speak [complain] whilst not being able to breathe…then off we go again.

To be honest, I am astounded at myself. I am NOT a person who has ever done charity stuff. And I am certainly not a person who has ever been sporty.  I think the most extreme sport I ever did was ice hockey – and it seemed easy because I was on skates! A bike is a totally different thing – one has to actually put a 'whole body' effort in…but I'm doing it. And enjoying it.

Recently, we  [the cycle group] have been wondering precisely how much of the money we've raised actually goes to the three charities we are supporting. Obviously the Action for Charity peeps have to make something, so we are interested in what is left after they take their cut.

I was interested [and shocked] to read the way that Cancer Research UK use THEIR funds for research. See below – ovarian cancer, which has the WORST survival rate in the UK [compared to the rest of Europe] seems very low on the scale. 

So – now we know why we have the worst survival rate!!

Ovarian cancer is the second leading cancer in women (affecting about 1/70) and the leading cause of death from gynaecological cancer, and the deadliest (1% of all women die of it). It is the 5th leading cause of cancer-related deaths in women, causing an estimated 15,000 deaths in 2008. Incidence is higher in developed countries.

Here is what Cancer Research UK say [and - where does the other 20 pence in a pound go??]:

"For every £1 donated, 80 pence is available to spend on our work to beat cancer. We receive no government funding for our research.

"We spent £332 million on our annual research activity in 2010/11. In almost every type of cancer, we fund more research than any other organisation in the UK.

We need to make sure nothing slows down the tremendous progress we’re making. Whilst we make the best use of every pound we raise, each year we receive a growing number of outstanding research proposals that we cannot afford to fund."

WebThis image is from Cancer Research UK. They are patently quite pleased with themselves. I am just confused – why not have an even distribution of funds?

WHY is the funding for Ovarian cancer research A QUARTER of the amount spent on Breast Cancer research?? Ovarian cancer is the second most common gynaecologic cancer and the deadliest in terms of absolute figure. It's insane – any research into ovarian cancer benefits breast cancer research. The reverse is not true.

Ovarian cancer is the second most common cancer in women - around 6,500 cases are diagnosed annually in the UK. Around one woman in 70 in the general population is at risk of developing ovarian cancer. Ovarian cancer often develops without any clear symptoms and many women only discover they have it once it has spread. Surely this warrants the self same amount of funding as breast cancer?

And here's a peculiar factoid I discovered on Wiki:

"A Swedish study, which followed more than 61,000 women for 13 years, has found a significant link between milk consumption and ovarian cancer. According to the BBC, "[Researchers] found that milk had the strongest link with ovarian cancer—those women who drank two or more glasses a day were at double the risk of those who did not consume it at all, or only in small amounts."

Recent studies have shown that women in sunnier countries have a lower rate of ovarian cancer, which may have some kind of connection with exposure to Vitamin D.[27]

And another [rather horrible] thing I discovered on Wiki is this: Grade 3 tumours have the worst prognosis and their cells are abnormal, referred to as poorly differentiated. There are four grades indicating the likelihood of the cancer to spread and the higher the grade, the more likely for this to occur.

Oooo shit! 'Occur'. HATE that word. Although 'reoccur' is worse…I didn't realise that I have the 'worst prognosis'!! Ovarian cancer, as  any other type of cancer, is graded, as well as staged. I had a Grade 3B [IIIB - macroscopic peritoneal metastases beyond pelvis less than 2cm in size] tumour. The tumour was bigger than my womb! [revolting factoid for your horror] the metastases was in the peritoneum. And other bits. Deleted.

Here's a world map – of ovarian cancer death rates. Nice huh? NOT

2000px-Ovary_cancer_world_map_-_Death_-_WHO2004_svgEnglish: Age-standardised death rates from Ovarian cancer by country (per 100,000 inhabitants). rates

No wonder we're all trying to raise money for research! It's critical!

So all you women complaining about sore arms from inoculations and sore butts from cycling…worrying about whether we need mosquito nets and hair tongs…think about how bad it is for women who have sore arms from having an 8 hour dose of chemo…once every few weeks until there ARE no more veins to push the needle into. And no hair to use those Ever So Important hair tongs ON.
Be proud of yourselves for what you're doing – SO many women will benefit. And, God forbid, it could be you who benefits one day...it sort of makes the sore arm less painful doesn't it?

Saturday 15 October 2011

raised so far: £4,720.00!!

Chuffed to bits! I had to raise £2800 to qualify for the cycle Kenya  – my initial target was £3000, then I changed it to £4000…so I have surpassed my 2nd target! Incredible, and only achieved with the help of family, friends and amazingly, complete strangers!

Today, Linda Jackson [a complete stranger] donated £20.00…so unexpected and so kind. Thanks Linda, and even better in a way is that I now know that the blog DOES help some women dealing with ovarian cancer. Apparently it does give women hope. I am so happy about that. Pouring one's blood and guts into the ether can sometimes be a little nerve wracking. But just ONE woman feeling better because of my experience is a result like that makes it worthwhile.

I have 13 days to go until the cycle…I am ill – we have caught some stomach bug that makes you feel like throwing up all the time, and both of us feel exhausted. NOT a good way to feel if you need to train! Plus I have a back ache like the devil. BUT, as today was birthday celebrations for the FH [after work], we will go for a long bike ride tomorrow. Then just short rides until I go to Kenya.

I really hope I've trained enough! I'll do it no matter what, but I am hoping not to be in agony the whole five days…

Monday 10 October 2011

no time! 18 days to go!

well – what an interesting few weeks! Cycle cycle cycle and …

steve jobsSadly, the iconic Steve Jobs died...what an amazing graduation speech he made…it's gone viral. He points out that once you accept that you are going to die, you know that you really have nothing to lose in this life, so [basically] do what you have to do and the devil take the hindmost!
Makes a difference to how we interact right? Well, it should anyway.

There's an interesting post about him here. An amazing man – innovative, humble – and a visionary. He'll be missed, but will live on through his creations. To Jobs, the computer was not a mere machine: it is a stylish, trend setting device; it communicates, entertains, and brings people together. Jobs completely changed our relationship with the computer.
Steve Jobs was a man ahead of his time who died well before his time. His finger, not just “on the pulse” but pushing it like an "app".

And on a more tedious note – I have been cycling. Quite a lot. And I just wish the 29th October would hurry up and get here! I think all of us are tired of the constant need to 'Get Out on the Bike'! *sigh* – but it's got to be done…if we don't, we'll just die in Kenya [well, maybe not actually DIE but sure as hell we'll feel like it!]
Training is very important and we have to do it…but that doesn't stop us all complaining about it! In the UK there has been a lot of wind [dislike!] and of course we need to get our lazy butts up some hills [double dislike]. Hills PLUS wind…well, no comment!! Suffice to say, we're all tired of training and want to Get To It!

BUT…crap week of cleaning etc none withstanding [seems the company I was doing graphic design for has run out of work??], I had a brilliant day yesterday – it started out with a freezing morning at the Salt Mine [gloom]…but ended up being one of those days you just can't get your head around.

Story is: I've been shopping around for a pair of Oakley's. For weeks. I found them at their cheapest at £140 – so, I went mad and ordered them…only to get an email the next day saying they were out of stock! Argh! Rang up and cancelled the order – in the meantime, the Brother was advising me on eBay peeps that sell them. Great price, but no joy, as it would take 21 days for them to arrive – I have EIGHTEEN DAYS [omg!!] until the cycle, so couldn't rely on that. Stupid to try so late, but all my shekels have been going to the pot for the £290 air taxes.

oakleys

The brother then rang me, demanding the details of the Oakley glasses that I want. He decided to buy them for me through his company as a 'charitable' donation – he already did a run and raised loads for me! So I resisted, as they are very expensive, he insisted [in a rather shouty voice! :) ] – and won. Brothers tend to do that. And it's just rude to keep arguing.

I got off the phone and I was in tears. Floods of them. It took me ages to sort out the email - isn't it strange how unexpected generosity makes one so emotional? He bought my Oakleys for me! As a donation!? Thank God? ER – no, thank the brother!! My eyeballs have been agony every time I go out on a ride. I have bought eye drops but they are just a reaction to a result, not a solution to a problem…and if I had to cycle through the Kenya dust and sand without a decent pair of glasses I'd probably  have a small fit. Er. No. A BIG fit!! And a crash or two…

So, thank you very much Bro…I am really touched…and ever so grateful . You've certainly saved my eyeballs from being frazzled to death! :)
pete-01

And today another lovely thing – well, two actually. Good things come in threes right? My auntie and uncle donated to my fund – check this out…I have now raised £4,689.00!
AND my 'Auntie' Kay has sent me a lovely card with some Canadian dollars in it to 'get something for myself'…and to tell me she is proud of me. I have been eyeing running shoes for weeks, as mine are disintegrating. So, shoes, here we come :) Thanks Kay.

Plus, a friend got me some Buff headbands at cost – yay! They are fab and really do work.

Thank you, everyone who has helped me raise this money, and thank you to everyone who has helped me keep a semblance of confidence, which may be just as important. It means a lot – and it means I absolutely HAVE to do the cycle [I have been wavering, especially this week] just because of your confidence that I will.

And I will!!

Tuesday 4 October 2011

25 days to go!

Only 25 days until we cycle 400km across Kenya? Surely not!  It doesn't seem like over a year and a half ago since I signed up for this challenge. [although some days it feels like 10 years…fund raising is a tad exhausting]

The training is going quite well, although the mental half of it has been the hardest – just getting to grips with the fact that I should be able to do it [WILL be able to!], avoiding panic and concentrating on just doing it! Unfortunately Kenya has just declared war on the Somalian militia too – but that's about 600 miles from where we are, and hopefully won't affect us. Fingers crossed. Being kidnapped really would be a bore.

The FH and I have been cycling to Budleigh and back [about 35 miles round trip with good elevations] and it's started to feel like it's too short a ride Yay! That's got to be good right? Here's the bike and me on Budleigh beach…just after being yelled at by an Old Crone for cycling down the Front…what a naughty person I am eh?

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The other thing I've been struggling with is depression – what? As you, my jolly blog followers know, I am usually a most positive person – but recently I have been waging war with PTSD.

It's insidious and subtle…it makes me lethargic and uninterested. It robs my self confidence and flattens my spirit. I am trying to find my own way of coping, but if I don't sort it out soon, I'll be calling MacMillan. But I am trying to avoid that really. It's not like I don't know WHY I am depressed – it's just that I don't know how to get rid of it. Logic doesn't seem to work. Apparently it's common. But that doesn't help either. The thing is, it's intermittent – so how can I ask for help? Mostly it's to do with work – not having any really. And death. And I am tired of not doing what I'm good at, and tired of working for the minimum wage…long and short – I am peeved  in general! It's a common theme for cancery types – we just want our normal lives back – and that's never going to happen.

And the PCCI doesn't help! So horrible to think it may last 10 years or more. It's VERY frustrating, as non cancery people don't believe that it's real. Well. Take it from me – it IS. But then again, if I live for another ten years, the irritation will be worth it ;)

But all this BS aside – I am looking forward to Kenya. It's going to be an amazing experience, and an amazing achievement if I do it.  Spent Sunday with Vicky the Step Daughter, and that helped me a lot – she has such a fabulous attitude. She has changed my outlook from worried to totally NOT worried. Gotta love that!

An ice cream stop on the way back from Budleigh…
DSCF1930

So far, I have raised £4,613.00. Please, if you can, donate now – I would love to hit K5! Donate here.

Tuesday 27 September 2011

Nobel peace laureate Wangari Maathai dies in Nairobi

A member of the Greenbelt Movement holds a portrait of the 2004 Nobel Peace Prize winner, Prof Wangari Maathai, at the NGO’s office in Nairobi yesterday. Prof Maathai died of ovarian cancer.

A member of the Greenbelt Movement holds a portrait of the 2004 Nobel Peace Prize winner, Prof Wangari Maathai, at the NGO’s office in Nairobi yesterday. Prof Maathai died of ovarian cancer. AFP

(Reuters) - Wangari Maathai, the first African woman to win the Nobel Peace Prize for her campaigns to save Kenyan forests, died in hospital on Sunday after a long struggle with ovarian cancer.

Maathai, 71, founded the Green Belt Movement in 1977 to plant trees to prevent environmental and social conditions deteriorating and hurting poor people, especially women, living in rural Kenya.

Her movement expanded in the 1980s and 1990s to embrace wider campaigns for social, economic and political change, setting her on a collision course with the government of the then-president, Daniel arap Moi. Maathai, who won the Peace Prize in 2004, had to endure being whipped, tear-gassed and threatened with death for her devotion to Africa's forests and her desire to end the corruption that often spells their destruction.

"It's a matter of life and death for this country," Maathai once said. "The Kenyan forests are facing extinction and it is a man-made problem. You cannot protect the environment unless you empower people, you inform them, and you help them understand that these resources are their own, that they must protect them."

Maathai was born in the central highlands of Kenya on April 1, 1940. She earned a master's degree in the United States before becoming the first woman in Kenya to receive a doctorate for veterinary medicine and be appointed a professor.

"Wangari Maathai will be remembered as a committed champion of the environment, sustainable development, women's rights, and democracy," said former U.N. Secretary General Kofi Annan.

"Wangari was a courageous leader. Her energy and life-long dedication to improve the lives and livelihoods of people will continue to inspire generations of young people around the world," he said.

Secretary of State Hillary Clinton said: "The world has lost a powerful force for peace, democracy and women's rights."

"Her death has left a gaping hole among the ranks of women leaders, but she leaves behind a solid foundation for others to build upon. I was inspired by her story and proud to call her my friend," Clinton said in a statement.

wangari maathai

Former talk show host Oprah Winfrey (R) and Kenyan Environmentalist Wangari Maathai (L) during a Tree Planting & Dedication ceremony commemorating the two-day "Be the Change" leadership conference addressed by both women at the Oprah Winfrey Leadership Academy for Girls in Henley-on-Klip, outside Johannesburg, November 25, 2008. Photo/FILE

"GLOBAL ICON"

In 1989, Maathai's protests forced Moi to abandon plans to erect an office tower in Uhuru Park, an oasis of green that flanks the main highway running through the centre of the Kenyan capital Nairobi.

In 1999, Maathai was beaten and whipped by guards during a protest against the sale of public land in Karura Forest.

The forest in Nairobi covers more than 1,000 hectares and is home to wildlife such as duiker antelopes and civets, as well as caves used by Mau Mau fighters in their struggle against British rule.

"We have lost a serious personality who shaped not only Kenya but the world at large. We have lost a great mind, a great woman who could change lives in this country," said Nairobi resident Gikonge Mugwongo.

Maathai called forest clearance a "suicidal mission".

"To interfere with them is to interfere with the rain system, the water system and therefore agriculture, not to mention the other industries dependent on hydro-electricity."

Maathai's movement spread across Africa and has gone on to plant more than 47 million trees to slow deforestation and erosion. She joined the U.N. Environment Program in 2006 to launch a campaign to plant a billion trees worldwide.

"Her departure is untimely and a very great loss to all of us who knew her -- as a mother, relative, co-worker, colleague, role model, and heroine -- or those who admired her determination to make the world a peaceful, healthy and better place for all of us," her movement said in a statement.

Tributes poured in for Maathai on social media.

"We join family and friends in mourning Prof. Wangari Maathai, a phenomenal woman, a friend and role model. You lived, you inspired," said Kenyan politician Martha Karua on her Twitter account.

Besides founding the Green Belt Movement, Maathai was also elected to parliament in 2002 and appointed assistant minister for the environment in 2003 under President Mwai Kibaki.

Kibaki said Maathai was a "global icon who has left an indelible mark in the world of environmental conservation".

"With the passing on of Professor Maathai, the country and the world has not only lost a renowned environmentalist but also a great human rights crusader," he said.

wangari

not blogged for a while…

FB-185215_206462016 Patently, I am upsetting somebody [oh yes - you know who you are – so feel free to comment as you said you are 'itching to''], and I am sorry about that [very sorry actually], and it makes me sad. Very sad.

And  it's made me not want to post for a while. Just writing this post is making my face twitch and collapse with stress…but I've decided after much thought, that I can't not blog because of you I'm afraid. There are too many people who rely on me to post. People who like this blog for whatever reason - usually because they have or have had cancer!

So. Thinking.

I just thought to put my own experience here. That's all. Just my thoughts and feelings. And of course my progress. I have NEVER meant to hurt anyone's feelings.

I am really hoping that my progress is inspiring. Not the WAY I am progressing [because usually I progress in a rather grumpy fashion] but the FACT that I am. The fact that I had Stage 3B ovarian cancer in 2008 and now in 2011 I am still alive….well, that's got to be a good thing right? The 'facts' and 'stats' would have me dead already…pffft!

Facts and stats? Get on – they are theoretical – theories have never been my favourite things. I prefer hard fact. And a lot of the information on the internet is NOT based on fact.

Just like opinions are not necessarily based on fact.

Saturday 10 September 2011

another goodbye

gaynorThis week I lost a truly lovely friend. The picture above just sums her up for me -  that glorious smile. It says everything about her. She was a person who made me feel welcome in her heart the minute I met her. She was a breath of fresh air in a world where a lot of people seem to have an agenda – Gaynor didn't. She was just as transparent as glass. And brought in as much light. A beam of sunlight. For me anyway. 

We met not that long ago for lunch. What happened? It is so surreal that she has died. I can't quite get my head round it. Shock? Denial?

Gaynor had a recurrence. Ovarian bloody cancer. Of course. They tried everything – different types of chemo, different diet etc. A horrible regime that never seemed to end. And was constantly painful. Horribly painful. But they did their best. And Gaynor fought like a tiger!
But it wasn't enough! Not through their lack of trying, but through lack of knowledge of WHY this disease comes back so viciously. We so desperately need more research into ovarian cancer. 

Hence I am doing the Kenya cycle - not for me. For my friends, here and gone. To support those still battling, and to honour those we have lost.

It was amazing to see her strength in the face of it. She didn't complain, she didn't whine. She got on with her life as much as she could – driving her girls to swimming, going to work – usually exhausted, but always positive…here she is with us. We had a lovely day – full of happiness. And teal balloons!

DSC_0149 Gaynor was a tiny person – same height as me, but slim as a willow. And bubbling with life – she never stopped! But the cancer simply ate her alive. It moved to her bowel and caused ascites. Ascites is horrific and very distressing. She was constantly having it drained as it was crushing the rest of her organs. The process was unpleasant, but she cracked on with it, texting and calling in the midst of what must have been a very uncomfortable experience.

She had serious guts. She was very, very brave.

She leaves three daughters, and of course her husband – all of whom she was so proud. She was always reporting on their achievements, large or small. I keep thinking of them all. And what their day must have been like when Gaynor died. I was shocked and tearful all day and achieved nothing sensible. How did they manage?
She died peacefully and painlessly in her sleep. I was so relieved to hear that from Andy, her lovely husband. They must have felt as if it was all a nightmare – perhaps hoping they'd wake up and it would all have gone away. Would that it had.

Gaynor. My dear friend. I miss you so much already. Your brave and intelligent attack on your illness. Your funny, witty remarks and stories - your calls...your advice. Your support of me. The energetic, non-stop way you lived life. Your fighting spirit. Your amazing shoes :) About which we had an ongoing and hilarious discussion.

shoesYou'll live on in my heart and memory, and in your beautiful girls of whom you were so proud - so you're not gone. Not really.

Just to say au revoir. Not goodbye - just until we meet again.


Gaynor does not want flowers at her funeral. As usual, she was thoughtful to the last  - she would like a donation to Megan's justgiving page instead. Or to Ovarian Cancer Action.