Wednesday, 31 December 2008

One last Christmas gift. And Happy New Year!!


Wednesday 31st December

How fun! I have a 'Lemonade Award' from 'ShoppingKharma'! Thanks sweetie - a nice last Christmas pressie as far as I’m concerned!

At first I was a bit confused and had to do a quick shufti about the web to see what it was - it seems if you win this award you are to post it on your blog and provide a link to the person who nominated you [of course!]. And that'd be here:ShoppingKharma
Then you should make your own list of 10 other recipients – and don’t forget to post a comment on their blog with a link back to yours, letting them know their blog’s a winner!

Reading about other people’s problems, lives, hopes and dreams has made me cry, laugh and sometimes just sit back and have a rethink about my own situation and KNOW how lucky I am. Plus I gain so much from all the little comments that my fellow bloggers make, and the fact that ‘no’ I am not having the biggest disaster in the world at all. And the very best bit is making new friends. All the time. We don’t have to agree, we don’t have to pretend – we can just be us. Here’s to new friends, and a great 2009!! Cin cin!! Salut! Saude, Viva! Wherever you are, congratulations and cheers to a new year!

This award is for people who are turning what appear to be ‘lemons’ into lemonade! Good call! I am a Secret Lemonade Drinker ;o)

Here’s my list of ten blogs which I either love or I am fascinated by:

what - me worry?
this is Nat – she is beating a path to her recovery in a new [for me anyway] and interesting way. And sometimes she jumps out of aeroplanes.

shoppingkharma
this is so, so interesting for me – such a brave person. see what you think.

the ramblings of Tracey
this is Tracey – she has had two types of cancer, and only just started the blog, but I know it’s going to become something really worth following. Her sense of humour is amazing,

a letter 2 ovarian cancer
this is Kia – read her blog, she’s going to make sure everyone knows about ovarian cancer – you rock girl!

julietedburn
this is Julie- she has had two lots of surgery and is three years out of ovarian cancer treatment – she is like what Sporty Spice would be in the real world. So positive, so active – a real inspiration. Also new to blogging, but she is madly trying to raise funds for cancer research – watch that space!

emilymcarthur
this is Em – hers is the first blog I read after being diagnosed, and I cried and cried, then I laughed and laughed – this is a very encouraging blog, it makes you understand that there’s always a way, no matter how bad it gets.

assertivepatient
Jeanne’s blog is always interesting – she doesn’t mince words and she doesn’t suffer fools lightly – a very interesting and motivating read.

airingout.livejournal
I just love this blog.

glynis-myjourney
this is Glynis. See her lovely poem, and she has a different way of looking at all this than I do. And she is so POSITIVE! yay!

Meno A Kwena
this is not so much a blog as the diary of my dear friend David, who is trying to single handedly save the wildlife of Botswana – oh, and he’s not doing a bad job! At the moment life seems idyllic in Botswana, as the water has magically arrived, but usually life for animals is very difficult there...read this, it’s wonderful!

Oh and I must tell you that David had me in tears this year - not only from his tales of the life in Botswana [which are wonderful] but just from being so kind in thinking of me. The safari business he runs in Botswana is his own business which he started from scratch and built up himself through hard effort and work over the years, and like the rest of us, he is suffering from the recession. But his gift to me was to get my butt and Andrew’s over there, free of charge. His exact message was: "XXXX Come recuperate here that will fix you once and 4 all!!! Get yourselves to Maun I will look after you guys so not to worry about money to stay at camp..." Oh, we’d have to buy our own wine. Gosh... ;o). How can you put price on something like that? Plus I know it WOULD help me. I was and am, so touched, and we WILL go there. But in the meantime, anyone who you think would enjoy experiencing REAL life - well, point them to David. They won’t regret it. PULA!!!

Sunday, 21 December 2008

and what else? oh yes...the busy day

Thursday 18th December

Today I had a photographer from the Express & Echo round, as yesterday I was interviewed over the phone by a reporter called Katy. She initially called me on Wednesday, but called yesterday to check some details, which was rather nice, as it would be awful if she got things wrong - it could be VERY distressing for some women reading it, not to mention for me. Statistics in particular - although personally, I don’t give a monkies for them, as they are a generalization, and I am not intending to become a 'statistic' - why would I?

Anyway. The photographer was lovely - he was so friendly and made me feel pretty comfortable [as much as you can be, having your pic taken when you feel like an ugly duckling] - we did some 'posing' garden things and some "lets chuck those leaves in the air" things…so at least I got the driveway clear of leaves at the same time. The edition seems to be coming out on the 5th January, but I will check that nearer the time. it’s the "Echo for Women" edition, so I am hoping lots of women will read it and realize that ovarian cancer exists and oh yes! It can attack anyone. Please! Read – take it in – remember.

The other thing was a load of logs. We decided that over Christmas, as we’re going to be home, it’d be nice to have a fire in the wood burner all the time. So we ordered some logs - so when Aj got home we had to move them from the driveway where I'd helped the chap drop them, into the back garden. Uff!! I enjoyed that, as a while ago I wouldn’t have been able to do it, but this evening I hauled logs and it was great - I am now Officially Shattered!

Saturday, 20 December 2008

to all our wonderful family and friends...thank you and Merry Christmas!

Saturday 20th December

This little post might be the most important one I’ve done this year. It’s to say THANK YOU to all our family and friends. This year everyone we know has been wonderful in their own unique way, and without the support of all of you, we could never have managed so well.

So to everyone we know, even the ones we haven’t actually met [YET!!], we send the warmest Christmas wishes, and hope for the best possible outcome for everyone in everything they are striving for in the New Year.

But most of all, we send lots of love from me and from Andrew to all of you. Thank you for just being there. You are all amazing!

HAPPY CHRISTMAS!!!

PS: below is a REAL film of us, to add a bit of laughter to today! ;o)

Wednesday, 17 December 2008

us at the BBC Radio Devon studio

A bit early for me - I had to have 5 coffees! This was fun, a pity we didn't hear it at all, as it's the only program that doesn't have live replay! But even so, any little bit of publicity we can get for OC is good, so I don't think it mattered what I sounded like :o)

More amusing things happened later in the day - to follow tomorrow...need SLEEP!



Monday, 15 December 2008

a bit of fun and some publicity!



Monday 15th December

This is a quick post [I hope - usually I get carried away babbling on]. Today someone called me from BBC Radio in Plymouth. She wanted to see if I would be a reasonable candidate for a live radio interview. I suppose that means someone who speaks, as averse to someone that doesn't. She was very personable, and we had a nice chat - then she invited me to do a live [LIVE!! OMG!] interview at the BBC studio in Exeter. So tomorrow morning at 7.45am GMT, I shall be waffling away live on BBC Radio Devon. How cool is that! I think…

My only worry is that I may make some dreadful gaffe - and forever have to hide my head heh heh. But anything that brings ovarian cancer to the public eye, and makes women AWARE of this dreadful disease - well, it can’t be bad can it? And as I was helpfully reminded by one of my more sensible friends; Oscar Wilde said: "there is only one thing in the world worse than being talked about, and that is not being talked about." We need people to talk about ovarian cancer, so no matter what, it’ll be good. After what I’ve been through this year, it’ll be a doddle [she says!]

For those of you who won’t be able to tune into Radio Devon, the live link to listen on any computer, anywhere, is here:
http://www.bbc.co.uk/iplayer/console/bbc_radio_devon/

yay! even my mates in South Africa can listen - isn’t technology marvellous sometimes?

Oh, and hilarious thing of the day - I was in the papers last week, and someone from Exeter let me know via a message on Facebook, as I was unaware anyone was doing an article, and she had seen it and looked me up on there - it turns out she lives about 200 yards from me! How weird is that? Her Mum had OC last year in August and is now recovering. Well I hope - but I shall see for myself, as I intend to meet her and her lovely daughter too. Did try lurking outside her house tonight but we missed each other. She walked her Chihuahua past our house and I raced past hers on the way to the shop. Funny old world! Must organise a coffee - all this lurking we could get arrested...

Here’s the links to the newspaper articles:

The Express and Echo



and here:
The Western Morning News
this one is about myself and one of the other finalists, Carly Gardiner.


I know!! It wasn’t as short as I hoped - but I AM a bit excited!! :o)

the thin line

Friday 12th December


Oh sh*t. I just went to look at the message board under my vote page on the FB contest. It's really cool that people can leave messages, as they are almost like a hug. Today there's a message there from a man who lost his wife to OC.

I read it, and as usual I thought I'd send a reply to say thanks. I try to send a note mostly, as it seems bad manners not too, and after all, they have made the effort to send me a message AND to vote. Which is very kind.

Anyway, I started to write him a note, then what he'd said suddenly messed up my head completely [I am editing here - most of this was full of curses, but I am calmer now!]. I didn’t want to look at the computer screen for one more second, it was as if it might attack me - I jumped out of the chair and ran into the kitchen and had this massive crying attack. Then I freaked out because I was having a crying attack, decided I must get a grip and started running around the house 'doing things' - making the beds, putting the washing on, tidying up, as if I were going to drop dead any second! I caught site of me speeding past the bedroom mirror, white as a sheet and looking like a mad woman. And all the while I was thinking but for the Grace of God, that could have been Andrew writing that message.

And THAT thought is what finally calmed me down – he won’t have to write, that. Ever. But it really woke me up to what a thin line there is between tootling along in everyday life NOT thinking about dying of cancer, and what’s actually happening under the surface.

Tuesday, 9 December 2008

Here is the initial FB for Good Story for those of you who aren't on Facebook


new hair after chemo! hooray!

Description:
laughing as usual! something to do with my head looking like a tennis ball...and so happy to have even this little bit of hair after it all fell out due to chemo. This photo went all round the world, much to everyone's hilarity!




A few weeks later

Description:
more hair already! someone asked if I was standing in a grow bag? a little more dignified in this photo don't you think?

Title:
the best thing since sliced bread!

Story:
I joined FB to try to get in touch with old school friends. I did, and just in the nick of time [for me anyway!]. I was diagnosed with Ovarian Cancer stage 3B this year, and the ability to communicate with people worldwide whilst I have been ill has kept me sane. I even had the laptop by my bed for a while! If I felt low there was someone there to either throw something at me, play some game with or just have a chatter with on the message bit. I never felt lonely, even though I have been at home by myself most of the time.

Throughout surgery, chemotherapy, losing my hair and sometimes almost losing my mind, as well as the support of family and friends, I have had the support of friends I haven’t seen for years, and others whom I haven’t seen at ALL but met through FB ovarian cancer groups. Without FB I wouldn’t have met those people, or found the support groups, and couldn’t have coped so well.

These friends, old and new, made me chuckle every day - it's been invaluable to me. I am now in remission, and I can be supportive of other people in the same way, using the same tools. Great!!

It wasn’t a very funny year, but I'm still laughing because of this mine of good fellowship and information that I discovered here. Best thing since sliced bread as far as I'm concerned!

URL #1
sandhy's blog
URL #2
Ovacome-The-Ovarian-Cancer-Support-Network
URL #3
Facebook Causes: The Eve Appeal

NEWSFLASH!

Tuesday 9th December

Nat! I have been trying out the eyebrow pencil - it does actually work rather well! So I am having a word with the eyelashes, as it would be useful if they could stop dropping out right about now. I had one run in with false eyelashes, and it was a disaster, so them remaining ON my eyes would be good.

Today I have had some more email to do with the Facebook contest - well, from the PR company who are organising everything [I think!]. It gets more nerve wracking!!

The gist of it being that they'd like to speak with the media where I live to encourage votes for my submission through stories in the press. Apparently this would entail them speaking to reporters in our area to tell them about my story and the Facebook for Good competition, and then they will probably want to interview me to get my thoughts first hand. They’re going to start speaking with local papers and radio today. If they do want to interview me, it's likely that they would want to do it over the phone [or maybe in the studio if it's radio, but they’re often happy to do it over the phone as well]. For any interview, they won’t need more than about twenty minutes of my time. It seems that any potential interviews would happen either this week or early next week.

What am I going to say? I know I have plenty to say on here, but writing and speaking are totally different. I could write a book, no stress, but speak to people? Oops - I’ve always been bad at that, usually babbling away idiotically from nerves. Oh well, we’ll have to see what happens - they might think the whole things a completely tedious idea. No one has been shot or blown up after all!

Hmm - must ring Force and see if they have any advice. I will keep you posted as to what occurs - it's fun anyway if nothing else, and publicity for Ovarian Cancer, thanks to Facebook , would be very good.

And thanks again all you people who have voted for me - I think it's a difficult choice when you read the other stories, so I am really pleased!

Eek! Action stations with Facebook

Tuesday 9th December

I just better explain a little about the Facebook for Good contest, as it's this weeks hilarious 5 minutes in our house. Facebook started a contest on the 06 October, the rules were quite simple;
Rules: "Enter an essay between 150 and 250 words telling a true, compelling story about how you have used Facebook to better your life, and/or your community, and/or the lives of those around you".
1st Prize: Up to five (5) Finalists per country will each receive a Flip Ultra Camcorder from Flip Video, a pocket-sized camcorder with one-touch recording and 2x digital zoom.
Grand Prize:
Each Grand Prize Winner can elect to either: i) accept 1,000 Euros or equivalent in local currency as of date of award, or ii) designate to award 3,000 Euros or equivalent in local currency to one recognized charity or non-profit organization operating in the winner’s country on his / her behalf.

Obviously the €3000 award for a charity would be really cool! So, on the 28th October [or October 28 if you're in the US], I submitted a story, with the vague notion that it would bring Ovarian Cancer to the public awareness a little more if nothing else - so many people use Facebook that it's mind boggling. No I don’t know the statistics, but it’s plain to see. Anyway - submitted the story, nagged everyone to vote and promptly forgot it, not expecting to get anywhere. Shriek!! While I was working in Portugal, I received an email from Facebook asking me to complete a load of Release Forms [what??] and send them back forthwith, as I had been selected as one of the five finalists for the UK contest [there is a contest in each country]. I was totally amazed!!

Major chaos, as the USA uses the dates backwards [not ideal for chemo brain types like myself!], and the time zone is five [?] hours behind us. Lucky for me, as it gave me time to check it out and fill it in after getting the Jones to give it the once over too. Sent everything back, and the next thing to arrive was a video camera. This arrived at home in the UK on the Thursday. I had to make a 'supporting' video for my story in order to qualify for the next part of the contest. So Jonesy had to investigate the camera pretty sharpish, as I would arrive home on Friday evening, and had to get the video in by Sunday evening. Uff! I didn’t expect to have to make a video, and actually have to move and SPEAK.

At any rate. I got home Friday, pretty shattered [travelling to Portugal via Gatwick is rather like passing through Hell I imagine] and spent Saturday trying to work out how to use the video program – the camera is amazing! The size of a mobile phone and you just point, shoot, plug it into the pc and there’s your video. Sorted a load of pics [as you’ve seen] and then came the worst bit as far as I am concerned - having to make a short clip of ME. Oooo - I think Andrew would quite happily have throttled me if it were legal, as I got so stressed about how I looked etc etc. Yes, yes, the old vanity again! But when I saw one of the other contestants videos after they were all posted I felt a total twit. She has Motor Neurone Disease and it must have been utterly exhausting for her to make the video she made - watch it and cry. I did.

Right. What? Oh - I sent the video off. Couldn't work out how to get music onto it either. Next thing arrived was a set of Release Forms that had to be filled in by each person in the video! And it had to be back the next evening. This was quite funny, how to get everyone’s signature on a Word document via the internet? Not everyone has a scanner. But eventually we succeeded, and that was all sent back too. Phew...now to sit back and see what happened next.

This is now:
ROUND 2: PUBLIC VOTING December 1, 2008 to December 15, 2008.
Then there’s:
ROUND 2: JUDGING TO SELECT 1 WINNER PER COUNTRY December 16, 2008 to December 22, 2008
Then finally there’s:
WINNERS ANNOUNCED ON FACEBOOK January 5, 2009

Pretty complicated way of judging.

In the meantime, on the voting page, every single day someone leaves an encouraging message - it’s incredible. People don’t just vote, they vote every day [this is allowed] and they leave remarks that are so kind. I actually don’t really mind whether I win or not, the actual experience so far has been really uplifting.

Thanks for that everyone!

Monday, 8 December 2008

Here we go...insert your own expletive - again!!

Monday 8th December


Ok, that's enough of the cheery stuff. Back to bitching again! Right - where was I? I am not very happy today. But I’ll get to that in a minute. We had a super weekend - my brother and his wife arrived Saturday for the night, and I spent the morning cleaning the house. It was great, as most days I have almost forgotten I've been on chemo and I was racing about like a mad woman. The tiredness / fatigue crap doesn't happen so often now. Although last week I was exhausted most days for some reason, and it came to a head on Thursday when I just couldn’t any more. Went to bed at lunchtime as in days of yore which felt like a bit of a set back...but the weekend brought lots of energy with it, so I was really pleased.

We had a lovely family lunch on Sunday to celebrate my Dad's 70th birthday. I even managed to organise it, and that was an achievement in itself with the chemo brain still making itself felt. But thanks to the trusty pc and a million reminders in Outlook and on my mobile phone, I remembered [albeit at the last minute] to order the meals for everyone, and even get a card for Dad! So it all went off well - the pub we went to was fantastic, and it was super to see everyone. And most importantly, Dad enjoyed it. We trundled home as fat as ticks and collapsed by the fire. That nice Sunday afternoon tiredness where you know you’ve had a nice time. Not that stupid chemo tiredness where you feel as if you’ve been belted with a sledgehammer and your feet are coated in cement.

THEN...tadaah! Disaster - I went to take off my make up and magically removed half my eyelashes! It absolutely does not say that on the bottle! Plus I noticed that actually, my eyebrows are also doing a disappearing act. Here's where the expletive comes in. Twice. Loudly!! Grr. Jumped onto Google to see if it's normal [even though one of my friends has had the same thing, I needed to check] and apparently it’s known as "recurring alopecia areata" [partial loss of hair to normal people who speak English] and occurs mainly with the eyebrows and eyelashes. And it can carry on RECCURING for up to FIVE years after the chemo! Hence my miserable face today.

Better learn how to pencil in the eyebrows after all...bah and humbug.

the new face - with a hairstyle!

Monday 8th December

I am such a miserable bugger some days - so here's a cheery bit, my hair is going mad now. Yippee! The last chemo was on the 22nd of July 2008 - the week afterwards I shaved my head. Then it took about another 3 weeks for it to start growing. Goodbye head scarves, Buffs, wigs - hello skinhead chick! But now, 4 months later, I actually have what almost amounts to a hairstyle at last. Move over Posh - mines better!






faces

Sunday 30th November

Wow – I was looking through old photos today [thanks to the Facebook for Good video] and I got quite depressed and tearful. Not their fault obviously, but it’s looking back that’s the problem. Maybe we shouldn’t. Look back. Looking back at the face I think of as ‘mine’ was a bad idea. The face surrounded by lots of hair. The face without Bells Palsy – the face before all this BS cancer stuff happened – and to think I was complaining then!! The old face I had was actually rather a nice one actually. Ah vanity vanity...

Now I would be so happy to have a face without the synkinesis, a face before the exhaustion of cancer. A face that has loads of hair around it [as averse to ON it!]. I know that eventually my hair will grow back. Yes, yes...I know that eventually the hair that’s on my face right now will disappear. But. I wonder if my self confidence will ever grow back to the same extent. At the moment it certainly doesn’t feel like it. Today anyway.

Had a bad evening for sure. There’s times of the day that things are just too much – why is that? What are we? Products of our minds or mad emotional elements? What happens to our minds after something like cancer attacks us? We are never the same after. Of course not – memory is cruel, we recall ourselves differently than we actually are now. We wish for the past person – why? Shouldn’t we just accept the new person we are?? Well, maybe. But that’s SO hard!!

Everyone in my position wants to be the person they were before the cancer happened. But sometimes we are a better person after cancer – simply because we notice more. We see more clearly. We are more understanding, and more emphatic. We make more time now for people that need to talk. Maybe we are more sane. After cancer, that’s an amusing thought, as we all have totally crazy moments. But with regard to what’s important – well, I’d say definitely we’re saner. I am anyway. In some respects.

Isn’t this how we should always be anyway? Open minded, understanding, thoughtful? But we aren’t usually. We charge through life making assumptions and forgetting what should be important. So, get this! In some ways I am GLAD I had cancer. It has allowed me to see more clearly – the real things that are going on around me, the people who have no Prada bags, no Armani watches...the people who have real values.

But it also seems that since having cancer there aren’t so many easy days; there’s always a worry in the back of the mind like a nasty little rat. Not too many nights where you just sleep all the way through without waking up and thinking. That gnawing away at the back of the brain. Wonder if there’s a Paracetamol that includes rat poison?