frenzied activity

well today has been interesting on the ovarian cancer awareness front! Facebook and Twitter have been alive with comment and conversation. All over the news, on breakfast and lunchtime TV too. Because AT LONG LAST 'NICE' [a misnomer if ever there was one] have decided in their Majesty, that it would be a good idea to test for ovarian cancer when the symptoms present.

Ffft! How obvious IS that?? "New guidance published today (27 April) from NICE calls for improved testing to allow faster diagnosis" – we have been 'calling' [what?] for that for years now. Fabulous that they've final got with the program. Took long enough…

Articles:

"Women who have ovarian cancer could have a greater chance of surviving the disease if more blood tests are offered in primary care. "

"This clinical guideline offers evidence-based advice on the care and early treatment of women with suspected or confirmed ovarian cancer."

"GPs should offer more blood tests to try to detect ovarian cancer earlier, according to new guidelines for the NHS."

"Call for action to detect Ovarian Cancer" [video]

 NICE guidelines [PDF]

etc etc…this is none too soon. Whilst NASTY NICE have been prevaricating, women have been fobbed off with diagnoses of IBS, indigestion – blah blah. And all through ignorance. Those women  may have effectively been dealt a death sentence. Late diagnosis is often lethal.

Educate yourself about this horrible disease.

What is really irritating is that they [NICE] say [to GP's]: "Carry out tests in primary care…if a woman (especially if 50 or over) reports having any of the following symptoms on a persistent or frequent basis…" ESPECIALLY IF 50 or OVER?? I know a lot of women with ovarian cancer – and the MINORITY of them are over 50. WAKE UP!!

grr. It's a step. And late in the day. But a step nevertheless. And the publicity has been awesome! Good thing!

the selfish writer

  So. Here we are again. Blogging. What IS blogging anyway? Who made up that word?? Apparently, 'blog' is a merging of the words: web+log. Web log? WTH? Whatever…it's not really important is it? It's a blog. It's MY blog. Blog away. Ok. I will.

The photo is of Bear. Bravest of the brave in the house – Chickens-Ville Arizona outside. ;) good! But her fear is touching.

Someone asked me recently how I find the 'time' to blog. And yes, I'm busy – but. My answer is that I do not 'find' the time...I MAKE the time, usually late at night after everything is done. Or not done. When I should be asleep. When my brain starts to work overtime…when I think about things that really, I could do without thinking about. But, being insomniac, what the hell eh? Might as well do something with the time? And boring the world to tears [or with tears] seems a good use of otherwise wasted [stressing out] time.

I 'MAKE' the time for my sanity. This blog is not really written for other people, as I've mentioned before – I am selfishly writing it for me, and sometimes I write posts for  other people's benefit. But I'd be a liar if I said I write the blog for the greater good. I am not a Saint. I don't. I always hope that my posts are useful to women like me. Of course I do. I hope I give some small encouragement. I hope they find ME before they find the Doomsayers. Or the Religious Nut cases…wow are they scary!?

But as I said when I started this, I am writing to save myself. To 'vent into the BlogUverse' if you will. The people who follow this will understand – most of us are the same. Well, it's not like we're writing to win an award is it?? We're writing to vent. Writing to clear our heads. We're not writing to upset people or inspire people particularly…we are writing our FEAR out. Writing our hearts out. Writing to feel calmer. Writing to remain sane.

This year has already been quite frightening. I lost CJ in March. I seem to be losing Sarah. This weekend I lost Pateeta…and now one of my dearest has just been diagnosed…I AM SICK OF THIS! [see: rage]

The rage seems to appear when there's either a death or a new dx. New dx in the family – well. That's just a bit hard to swallow. It's just rude and infuriating. Although I am pleased I am able to offer advice from experience. ONE good thing eh? Oh joy.

But I am hoping [so hoping] that I will be able to help. Be able to ease this persons journey. I am hoping I can say the right things at the right time. One thing I do know is, that this is hard.

Very hard.

Easter? what about it?

The FH and I are working Easter Friday and Easter Monday; it makes no difference to us if it's a holiday. We sort of forgot about Easter until today when we wanted to buy wine and realised all the shops [rightly so] were shut! Except for the Spar…yay them!

Holiday?? We don't really have them, as we are both self employed…as all self employed peeps will appreciate. BUT, we can take holiday if and when we want to if it's financially viable, so we can't complain! We spent Saturday and Sunday building a new gate. Our old one rotted out after a good 10 years…the FH did a totally fab job!

Measuring the ledge and braces…

The gate with undercoat – tomorrow – panel painting and then the gate will go lavender to  match the rest of the sills and trims of the house.

But today I am sad...not another one? Oh. Yes. Another one. grr. Sarah has decided to stop her treatment. And I applaud her. She has children to think about in the NOW – as she says, better to be "a mom AROUND and PARTICIPATING, not hiding inside all summer and watching their birthday parties on video at the end of the day". Treatment now would simply make her more ill and lying in bed all day.

But still. Even though I applaud her decision, it still makes me so, so sad. I have been reading Sarah's blog since my dx. Initially, she REALLY irritated me, as she seemed to be blathering on about clothes all the time. I shouted at her. She replied in a kind way – understanding my crossness. Is 'crossness' a word??  Anyway, after that, I read Sarah's blog whenever there was an update. So I feel that I 'know' her a little. Strange how communicating via blog can make you attached to someone.

Sarah has fought hard. And she has fought with style and panache! Long may she carry on I say. The decision she has made is TRUE bravery – she could have done something different. And why not? But she actually CHOSE this path.

Heartbreaking. But also encouraging – an excellent example of going out with dignity.
PLEASE donate here to help raise funds for research into ovarian, breast and cervical cancers - they are killing my friends!! it has to stop! And it will only stop with more research to find a cure.
please help with a few pounds?
thank you

how am I?

How am I REALLY you ask? Well! Well…

A lot of people have asked recently; "how are you doing really?" by DM's, messages and comments, as I suppose most of my blog posts now are 'normal' stuff – fund raising, Kenya cycle, kittens [translate as Attila the Hun and Genghis Khan in fur], my dad dying and sundry other blathering. The blog isn't really a 'cancer' blog any more. Yay me – it's a survivor blog. Happy day.

I forget to 'report back' and I know the people who follow this blog would like to know quite where I am. Because they are either going through what I went through, or worse. Probably worse. 
So. Ok. You want it, you get it :)
I have FINALLY started to feel 'normal' again after all this time. If I think about cancer it is mostly in relation to the cycle and my fund raising. I think I may have walked [walked? fought!! swearing all the way!] out of the fugue that is a cancer dx, chemo and the horrible and [barely noticeable when you're in it] aftershock. It has taken what? Feb 2008 until now…over 3 years. Physically, definitely. I am now strong again where I was so, so weak and exhausted. I never thought I'd be able to do the things I do now…ever again.

But I did struggle to get here – I did circuit training classes. I have been doing high intensity spinning classes. I dislike both – I am not Sporty Spice – my ideal is to loll about and read a book, drink some wine, have a cigarette. But I forced myself – and I mean, really. I had to FORCE myself to do these things. Plus last year was a nightmare as far as earning money was concerned – BUT, I think everything happens for a reason – I was cleaning 2 bed chalets, hauling laundry, digging gardens…the first few weeks of the chalet cleaning I used to cry making the beds, as the laundry was so heavy that I was in agony. But over last summer, I got strong. And I intend to remain that way. Winter, I was carrying tons of laundry on my head through 11 inches of snow for Pete's sake…even people who've never had chemo etc would struggle with that. My bloody feet and hands were blue! But I did it. And this may sound facetious, but I am quite proud of myself for that. I am.

Thinking back for this post, which I can honestly say I rarely do now, makes me feel a little sick. It makes me feel like crying – remembering the horrible exhaustion; the pain during chemo which I tried [I think I failed!] to play down – the horror of having no hair [which now seems so silly – but at the time it really was a serious nightmare. And I know I'm not alone in this!]…the every day terror of the next chemo, the next CA 125 result. Ugh. Smashing my head open and needing stitches  when I passed out - luckily that only happened to me once. My friend Tracey stills suffers with that 'side effect'. Hoo. Enough of that! Now I am stopping with the memory BS. It's not worth it. Other than to gauge how far I have come.

I have 'proper' work now. Graphic design, freelance, but still, work I know I can do well – thank God for that. I am so grateful. It's non stop, and it's taking me a while to get back into the throes of it – in fact, that's crap – I've NEVER worked like this! It's a frenzy from morning until night – a lot of the work we do is for newspapers and publications – sometimes a job comes in, and has a deadline of 30 minutes…NOT at all like the sedate and cumbersome pace I knew at Cinca. I am now a whirling dervish! And the chemo brain is extremely frustrating. But it seems to be improving. Or I am getting better at taking notes?

And. A lot of people have NOT asked how I am. Which sometimes strikes me as odd, as I know very well that in an inverse situation I would ask. But then again, I have the 'advantage' of having had cancer – it makes me so open to other people's problems. IF they want. But, *sigh*, it's to be expected I suppose – some people seem to think that once you've got your hair back you're fine, and should 'get over yourself'. Hmm. If only it were that simple. If only there was NO chance of a recurrence eh? If only.

thinking too much?

I posted this earlier. On the Facebook group. Then I thought about it. And decided to post it here too.

Just a thought for everyone who is still in chemo. Or has recurrence. or is still struggling at all. A new diagnosis – crap right?  Definitely worse than someone buying you jeans from Sainsbury’s…and that is BAD.

I have just been wandering through my old photos. Aren't pictures emotive? I had Stage 3B cancer here – and had no idea…I still can’t believe it.

The 2008 ones, when I still had cancer, are quite an emotional roller coaster for me. I don't usually look through them. But I did this evening. There are pictures of me with Grace [my grand daughter] just after I had my hair cut off, ready for losing it via chemo. I recall how I thought then that Grace might never see me again. Or I might never see her again. I remember thinking quite coldly and clearly about how I would organise the girls [my lovely step daughters] to look after the FH. And how I would get Mum and Dad to do this that and the other. I remember Grace asking me over and over if I would be ''all right''. And me telling her that of course I would be. And wondering all the time if I was lying.

There is a photo of me with my brother – and I remember thinking that I didn’t want him to leave. He came all the way from Brighton. I was so chuffed. I just wanted him to stay for a while – but life gets in the way. Doesn’t it. I just didn’t think I’d ever see him again either.

Get that horrific wig!

It just struck me that no matter whether it is a first dx or a recurrence...we feel the same fear. The same regrets. The same sense of loneliness.  The same sense of ‘WTF’???

And I just wanted to say - sometimes I am frivolous on here. Maybe the things I say aren't quite what you need to hear. BUT. I do feel that fright. I do feel how you feel. Never doubt it. But I can’t be serious all the time. And I don’t feel I should be actually. I can’t do downer posts because I am not that person – but saying that, I am so bloody lucky. And very very grateful for that – I can’t believe it some days. Remission – get it on!! And now, astoundingly, I have days when I don’t think about recurrence at all. But they are a rarity I must admit.

I wish good health for everyone - I wish cancer would simply fuck right off. This evening I am just thinking of you all - and it brings me to tears. I wish we could all just get together – all the women [the fighters!!] I have met through this blog, through Facebook - just once. I think that has to be my next fundraiser girls!

lots of love to you all. Just keep your head up!!

scabby hands – delightful!

what fun! I have a new 'lurgy'! Apparently it is called Dyshidrosis. Yeah, right. Very pronounceable – NOT. Very irritating – YES. My palms itch all the time and the skin is peeling off. I am resisting the urge to peel it off in strips after doing that once and grossing myself out totally. Bloody palms are not ladylike. Bloody palms are GROSS!

So, off to the dermatologist it seems? First get some stuff from the GP. Diagnosis for Dyshidrosis is to take a hive specific anti-histamine. I've been slapping steroid cream on it to no avail – apparently the stuff that works is a very strong steroid. Ffft – I don't like steroid anything. But needs must, as this is driving me mad.

It seems emotional stress may also further aggravate the condition. Well, I've certainly had enough of THAT this year. And last year.  Odd that stress should present itself as blistered palms though. Although saying that, my step daughter Vicky breaks out in Psoriasis from stress – similar I suppose. This is a walk in the park compared to what she goes through. But scarily, Dyshidrosis can become chronic. It's already spreading to my fingers. My hands feel really tight and the itching is unreal!

I've always felt that I 'get my stress out' because I vent quickly and suddenly, and then forget all about what has upset me. I am not a person who bears grudges or holds onto things. But perhaps some of the things that have upset me recently aren't so easily dealt with or forgotten. Perhaps I should deal with them. It might cure my itchy palms!

One of the things being a lot of new pain in my groin and tummy. Scarily, this is worsening. I am hoping it's all down to the adhesions. Roll on the next check up…

5th fundraiser: Top Rank Revival Night II

Grr – something is wrong with Blogger – no-one can post to the stand alone pages and WLW doesn't support the 'new page' function [you can do that in Wordpress], so I'm having to post this event here instead. I think the Google staff may be eating too many cookies or something…pay attention Google! Everyone is getting rather peeved about this!

Anyway! Not life threatening eh? So, Vicky, my step daughter, and I are doing one last JOINT fund raiser [well, I THINK it’s the last! I might have a mad moment and do another...] before the 400km cycle across Kenya in October. October seemed so far away last year, now it’s positively LOOMING. We have to train for the cycle now...difficult to fit in around work and I am quite worried!

The last Top Rank Revival was brilliant. We made loads of money for Vicky's fund, but the best thing was that the evening was such fun, as we had overwhelming support from lots of local people, including an entire Scooter Club and the Sentinel. If you couldn’t make the last one, this is a must, as we shan’t do another.

There will be Top Rank II t-shirts for sale at the venue, a raffle and loads of fab music from our wonderful DJ’s, Chris Williams and Andy Mic...the Original Top Rank Djs. The atmosphere will be great fun, and Ant Munday, [our BIGGEST supporter heh heh] is selling tickets at the club in advance for £5.00. On the night, they will be £6.00. Oh, and there’ll be a raffle. Vicky and I have tickets too - please email for info.

Please spread the word? Thanks!

Every penny donated helps someone's sister, daughter, mother, friend...to survive ovarian, breast or cervical cancer, or helps towards finding a way to diagnose it earlier or even cure it. ALL FUNDS GO TO RESEARCH into these three devastating cancers.

Thank you for reading this, and thanks to all of you who have donated already!

Look forward to seeing you on the night; if you can’t make it, we’ll be sad not to see you, but if you’d still like to make a donation to the Woman v Cancer fund please see either my or Vicky’s justgiving pages [it’s completely secure to donate on-line].

Please forward this info to everyone you know! Thanks!!
Sandhy and Vicky