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!

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…

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 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.

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…

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!

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."

This 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

English: Age-standardised death rates from Ovarian cancer by country (per 100,000 inhabitants).

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?

cycle Kenya is a definite!

Well, it seems my brain may have fixed itself – I'm feeling almost normal again. Yay. I think. We'll see. I have my friend constantly on my mind, so it's hard. BUT I know she'd kill me if she thought I was like this due to her. And it's not just her. It's a lot of random things too. Hey ho - onward and upward. Right? Right.

Today was exciting – the letters came out from Action for Charity, to let us know we are definitely confirmed on the cycle! WOOP!! Lots of girls posting on Facebook to say they have their letters, so lots of glee! Quite chuckalicious.

The Oldest Step Daughter [hence known as The OSD for brevity – I can't keep typing all that!], Vick, text me to say she had rung up Action for Charity and is confirmed on the ride – I text back to say I was not yet, and two minutes later, the [beastly and LATE!] postman arrived with the letter to tell me I am too! Surreal! So now all I have to do is find £294.03 for the air taxes…heavens above! It's a lot!! Plus, Kenya insists on a £30.00 CASH payment [surprise, surprise!] for the visa to enter.

But there you go, got to be paid, and the result, lots of awareness [we hope] and lots of funds for research gained. Now just to train to get through the cycle that supports women everywhere who are either in treatment, just out of it or living with the delightful aftermath of having had one of these hideous cancers.

We live with the constant fear of recurrence…it's not nice. We are in remission, but the fear is always still there in the back of the mind. A repulsive rat, gnawing away at ones confidence and every day life. So any support is good, and this cycle is women supporting women.

Women supporting women who SO desperately need that support. Ovarian cancer, cervical, breast cancer -  whatever! All these cancers attack women like Wild Dogs on a young animal – with no mercy, and a lot of gruesome bloodshed. Fighting it off is one thing – keeping it at bay – quite another. The strength of mind one needs to cope is quite astounding – I am not sure that I have it. I hope I do, as I need it. This is a trip one travels alone, no matter how many amazing people [and I have a lot of them!] are there beside the road – it's still a journey of solitude in many respects.

After all, it's we who could die of it, no-one else.

If you are at all concerned about any of these women's cancers, please donate here – the smallest donation helps. Thank you!

the Scar Project - battle scars

I just got home from a long evening of waiting tables…my feet are killing me [or trying to] and I am shattered. But I need to have a space between work and sleep, so I thought I'd pick up my email. LOTS of email as I tend to neglect it these days, as I'm not at the computer so much.

Then I thought I'd just check the blog feeds. And I read a post by Daria.  The video is moving - and this link is also very interesting.

Breast cancer is not about 'cute pink' things. Sort of like Ovarian cancer is not about cute teal things. It's about real women fighting for their lives - and their lives are forever changed by the aftershocks of whatever cancer they have had. The physical scarring, the mental scarring - the constant deliberations about what 'could' or 'might be' after such a life changing event.

To quote from the article: "Breast cancer charities have been very successful with their society balls, pink ribbon days, fun runs, and mass bikini walks. They glamorise breast cancer to the point where the charity is almost dissociated from the disease. The ribbons are a desirable fashion statement, their events peppered with celebrities; they are the place to be if you want to be photographed with the glitterati."

I liked that the writer went back and photographed the billboard - he was that disturbed by the reality of the image.

Interesting that something so horrible can become 'glamorous' in the eyes of the world. But I am sure [I know] that it's NOT in the eyes of the women struck with breast cancer. NO cancer is glamorous. Cancer is repulsive.

This post from Daria. I have copied it straight from her blog:

"According to the website, The SCAR Project is a series of large-scale portraits of young breast cancer survivors shot by fashion photographer David Jay.

The pictures are all of women between the ages 18 and 35. All the ladies are topless and bear the physical scars of breast cancer."

This video is not for the faint hearted. And I am suddenly grateful for my sore feet. At least  am here to HAVE sore feet…

I think a video of the scarring resultant from Ovarian cancer would be a good thing too - the scars will not be as emotive to many, as a scarred belly is not the same as a scarred breast. A scarred breast is a direct hit at a woman's psyche. But they are nonetheless battle scars we wear. Cut open from breast bone to pubic bone - it's a Battle Scar.

title

I sometimes want to change the title of the blog. to something less 'cancery'. After all, this is not just a 'cancer' blog any more - it's a 'what the hell I am doing now' blog too.  ha! this week we learned that this is a 'not' clever manoeuvre. My friend Tracey decided to do just that. And lo and behold, she disappeared from the bloguverse…hmm. not quite the plan, so I shan't be doing that!!

So - today was rather monstrous. 5 chalets to clean. By the time one reaches the fifth, one is totalled. Uff. 15 beds, 10 bathrooms….etc.

And today I had stomach cramp - which EVERYONE has. But of course, mine were a return of the cancer - or [you guessed it] a return of the cancer. Bah - pathetic! Anyone can have stomach cramp…me too. For no reason at all. It went away. Of course it did.

But having HAD cancer - well, it takes a lot from your life. If you lose weight quickly [like I have] you worry - otherwise you'd be jumping for joy! If you have stomach cramp, pain in the tummy, a sore knee - it's cancer. Grr. Even though it's not.

So a normal life is here, and I am SO trying to live it; except I think I will never be normal again [but was I ever anyway? heh heh]…but one thing is for sure, I have never been this fit in my life! January I will be starting training for the Women v Cancer cycle. Now THAT is going to be interesting!!

an excellent insight

While I was going through cancer and chemo and chaos, I had a hard time accepting or asking for help. I felt it would be 'weak' and tried my best to handle as much as I could on my own or with the FH. He never gave me a choice anyway ;o) Thank goodness. And it was exhausting. For everyone.

I did push people away. I didn't really want my family to see me at all - I just couldn't cope with the idea that they'd see me so ill. And whining. And bald. And that that would be how they remembered me if I died. Rather they remembered the argumentative baggage of yore…

Sometimes it was hard to cope with the reactions of friends or acquaintances, because I was feeling so touchy. Now, I understand everything - how hard some people tried, why some people ran away screaming [silently, but still…] and which people were just a bloody waste of space. And still are - but in someone else's space now thank you.

And how harsh I was. And how patient people really were with my 'oh I have cancer and I might die so don't even go there' bullshit. The following is a post by a fellow blogger - The Carcinista. She's a a two-and-a-half time ovarian cancer survivor. And a fashion freak ;o) And she is beating this bitch disease at last. Go girl! Third time lucky.

Her insight into this is excellent. Read on. Oh, and for UK cancery types, Ovacome is a really marvellous support group. Try them.

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Help Me Help You

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See her blog here: The Carcinista. And her Facebook page here.

when NICE is NOT nice

This morning I had fabulous news. My friend Nat, who is still battling ovarian cancer, has had the best news today. Thanks to Avastin, her tumours are FINALLY shrinking, and her CA 125 is the lowest it has been since she started her head to head with this hideous disease. Yes, she has a few side effects, but they are only due to the treatment itself and will stop when the treatment ends.

I think this will be the best Thanksgiving Nat has ever had! It certainly made my day. Please see Nat's blog here. It makes for interesting reading.

Having seen this result, and knowing what a difference this drug has made to my friend, it astounds me that we [and I mean ANY of us] can actually put a price on someone's life and deny them a chance of survival. How nauseating is that? And what does it say about society now? I am a bit startled by this article. And I notice they only say that it can be used for bowel cancer. No mention of the effects on ovarian cancer.

Then again, I think it's only the UK that actually HAS an almost free state healthcare service? I suppose we can't have everything. In the States they have cutting edge technology with regard to drugs and research, here we have to wait. But in the US they have to pay or die, here we get everything free.

So sad we can't have both. Cutting edge technology AND free medical healthcare for everyone. But then if it was a perfect world, no-one would have cancer in the first place would they?

New hope over bowel cancer drug  (UKPA) – 14 hours ago

"Pharmaceutical giant Roche is hoping to strike a deal with a health watchdog after experts rejected a bowel cancer drug for use on the NHS.

Avastin (bevacizumab), which costs about £1,800 a month, has been shown to shrink tumours in 78% of patients when it is added to chemotherapy drugs capecitabine and oxaliplatin. This could make them eligible for surgery although the drug is not a cure.

Avastin is suitable for patients with advanced (metastatic) bowel cancer, where the disease has spread around the body, and could potentially extend the lives of some 6,000 people a year in the UK.

Roche offered a patient access scheme to reduce the cost of Avastin, which would have seen a cap on its cost at 12 months and free oxaliplatin. Roche said this would have reduced the price to £36,000 per quality adjusted life year (QALY), above the £30,000 threshold used by the National Institute for Health and Clinical Excellence (Nice) which rejected the drug in a draft recommendation.

In a statement, Roche said it was "confident" it could continue to work with Nice to make Avastin available.

"The UK is now virtually the only country in the developed world not to provide Avastin for bowel cancer through the state healthcare service," the statement said.

John Melville, general manager at Roche UK, said: "We are in an unfortunate passport prescribing situation with Avastin whereby patients in Australia, Canada and most of Europe gain access, but patients in the UK, Latvia and Poland don't."

In clinical trials, adding Avastin to oxaliplatin-based chemotherapy typically increased survival to 21.3 months from 19.9 months with chemotherapy."

blogging and the comments

you know what I find amazing about blogging? The 'feed back'. The comments. It's the thing that makes blogging fun – the thing that makes us a big group; the thing that allows us to connect and interconnect. The thing that makes us friends, even though we have never and may never meet one another in 'real life'. This cyber life is amazing – I know [as in 'know'] so many women through my blog. I may never meet them. I would love to. But I don't need to. Not really. They are there for me even though they have never seen me in the flesh.  They remark on my ramblings, they support me when I am going crazy…they laugh at me when I am too serious. They talk to me when I am alone. They ballast me when I am drowning.

Thanks to all the women who comment on my blog. You have no idea how much it means to me.

Cancer is a revolting subject. And yet these women never fail me with their witty / meaningful / heartfelt / mad remarks. You rock girls. And thank you.

LIVESTRONG post – cancer – it's effects on my life

I promised my friend POD I would do a special post for LIVESTRONG day. And this is it. To be fair, it's a post that has been brewing and evolving [that means writing and then deleting to avoid the risk of sounding self pitying and grating – oh, and to avoid abusing people that piss me off!], as I have been having a 'cancer brain' type of week. Very irritating, as I have been obsessing about dying of this stupid, repulsive and repugnant disease. Hmm. Stupid. And a waste of time. But, hey ho, one year out of chemo, it seems this is normal. OOOO – goody!! I am normal! woop woop. Not.

Imagine this. A person sitting with their face in their hands. Crying. Bent over the keyboard, just trying to see the 'x'. That is me. Trying to remember when I was diagnosed. Chemo brain does that to you. It can be really crushing. I suppose it was the 30th January really – sound scan, you have a malignant mass. Thanks.

Anyway, back to the post – it is supposed to be about how cancer has affected my life. Well. No brainer there. Get cancer, life changes radically. Values change. Friends change. Thoughts change. Long term plans change. The resentment is unbelievable - once you've had cancer YOURSELF, life is totally different. It almost seems like we ought to be able to just have a holiday.  Take a long break. But of course we can't. We [like everyone else] have to work. We have to pay bills. We have to deal with everyday ins and outs. But it's hard, as we feel like our lives are short, and WHY should we have to bother with these things??

In the meantime, back at the ranch, I have a lot of confusions. Actually, since I had cancer, my life seems filled with confusing things that were never there before – maybe because before I had cancer I didn't dwell on thoughts of death or how I might die? I certainly didn't envisage a long and painful, undignified death.  I AVOIDED that. And I think I was right to. Why dwell on things that haven't happened to you? No reason at all.

Reasons for cancer brain week; reading [I can't sing, so I just read the words] hymns reminded me of death quite a lot. Plus one woman I talk to is obsessed with the fact that ovarian cancer is the ONE cancer that always comes back. This has made me think too much. What if it comes back? What if it tries to kill me? What if it DOES kill me?  What? Blah blah – what about Aj, I don't want to leave him alone - what about this that and the other? It's scary.

I haven't even CONSIDERED where I will be buried / thrown etc. But I must.

And I confuse myself further by feeling totally positive it won't come back one minute, then by thinking it already HAS the next. Aaargh!  I am reading Lance Armstrong's book 'It's not about the bike'. He went through this exact same thing. Once you are no longer doing something [like chemo] to kill the cancer, you seem to be at a loss. No action. Just wait and see if it recurs. The first year of remission is so complicated. And it's disturbing to have a mind that swings back and forth between one extreme and the other. This first year is chronic - a low grade terror infests your mind constantly, as the chance of recurrence is highest then.

And, this is the other confusion – should I keep talking to other women who have had OC? Am I simply wallowing in my own misery? Am I dragging it out? Two people [they do not have cancer] have both said that if I keep talking to women who have had the same thing as me, I shall never 'Get Over' my cancer [get over it? hahahaha – is that even a remote possibility??]. Neither of them were being mean – they were trying to help me. But I am frightened of being alone with my cancer. So now I don't know what to do.

Today I was told I am 'obsessed'. What?? Of course I am obsessed, obsessed with making sure other women know about ovarian cancer. Obsessed with spreading the word. Yes. But generally obsessed? no. I don't think so.

The group of women I am involved with are fantastic – we all understand one another, as we've all had the same thing – Ovarian Cancer [apart from one friend – she had cancer of a different type]. We swap tales, we swap knowledge. But, we talk about recipes and garden plants, children and hopes and dreams – sex and the lack of it, work, hair colour [of course! now that we HAVE hair]. We do not OBSESS about cancer. But right now, one of us is dying. And I understand that. It is a warning of the 'worst case' scenario. But, for others, it may seem I am dwelling on things I don't need to. But I dwell on those things anyway. Better to know the facts or live in blissful ignorance? I think the former.

It is a constant in my mind…the pain I have in my side – is it the cancer come back? Is it an adhesion [please let it be an adhesion!]. WHAT IS IT???!!! And the people I can talk to about this are the women who have the same thing. The women who are also sitting awake at night, wondering what the hell is going on in their bodies – the women who also have the exact same pain that I have. Why, why would I want to cut my connection with these women?? How would it help me to pretend I didn't have cancer? How would it help me to pretend I am a normal person who doesn't have to think they may die within five years. How would it help me to be alone with my thoughts? I don't think it would. It's not the same as 'knowing someone who has cancer' – THAT you can get away from, cosily in front of the fire, you can forget about them – not cruelly, but it's human nature to try to concentrate on the good things, which is what I always did. Before I had cancer.

So. Would it help me to be alone with my thoughts? I think not. I actually think I might go mad. I am not sure I will ever 'Get Over' my cancer. How depressing. Get over it?? Give me a break – it's always there like a childhood monster in the cupboard – but this time it's real.

So now I do know what to do. For now.

in support of the NHS

I am not very good at following the news or understanding much about politics…actually, that's an understatement – I don't follow it at all – it sort of leaks into my head by osmosis sometimes. And it's usually bad. So I try to ignore it. I have enough problems of my own and don't particularly want to get involved in more or watch a bunch of people lie through their teeth on TV. It just makes me furious. So what's the point? This probably makes me an airheaded ignoramus in the eyes of many. Well, there you go. But at least I can be a cheerful airheaded ignoramus.

Therefore I am probably miles behind [and ill informed] about what is going on here, regarding the huge debate going on in the States; which appears to be: 'What To Do About Our Deplorable Health System'.

And the bits of information I have gleaned from the women I know over there have indicated a sort of demented hysteria of mud slinging, lies and misdirection. So when someone sent me a link about supporting the NHS today, I clicked it instead of deleting it. I was amazed to see a video of what is apparently about one of our own politicians deriding the British NHS system. What?

The only conclusion I can draw is that he has either never been very ill, or that he can afford private medical insurance. [most likely paid for by his 'expenses'? along with a trouser press or two…]. Well, apart from the dreadful 'bias' in his tiny little brain + the fact that his key political influence was Enoch Powell - is that a disease?? er...probably.

And, naturally, it made me FURIOUS! See, told you…I should absolutely NOT follow the news.

So, I sent the information they asked for, it is [and I quote] "to help Americans consider their own healthcare choices with facts, not fiction about our system". Good idea. Facts are always quite handy.

See the link here.

Last year I had Ovarian Cancer. I had ALL my excellent treatment, scans etc FREE. I didn't have any financial worries to add to my health worries. I didn't have to beg an insurance company for my life. I didn't have to fill in hundreds of forms, make hundreds of phone calls or remortgage my home. The treatment was first class, and I am now in remission.
If I'd had to find the money to pay for even a part of my treatment, it would have been very difficult, not to mention the additional stress I and my husband would have been under.
I am astounded that anyone's survival could be dependant upon whether or not an insurance company 'feels like' paying for it. No thank you.
I am grateful every day for the NHS - no, it's not perfect - but it's certainly better to have an imperfect system, than to die because you can't 'afford' treatment that may save your life.

excellent news!

Saturday 28th February 2009

I just had my newsletter thing from Ovacome, and noticed a good little article in there. The UK government aim to phase out the prescription charge for all patients with long-term conditions.

The Government will consult with clinicians, stakeholders and patient groups to work out which conditions will be covered.

At present, long-term conditions are those that cannot be cured but can be controlled through medication and other therapies and which have an impact on a person's quality of life.

The move, which immediately takes around 250,000 people out of NHS prescription charges, rising to five million in the longer term, was welcomed by campaigners.

Mr Brown said: "Because we know that almost every British family has been touched by cancer, (Health Secretary) Alan Johnson and I know we must do more to relieve the financial worry that so often goes alongside the heartache, so our plan is next year to abolish all prescription charges for everyone with cancer."

See the full article here in the Independant, and here, at the NHS site

Way to go Gordon!