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?

Sunday, 30 November 2008

Facebook for Good video!

here's the Facebook for Good video! Eek!

chaos...

Sunday 30th November

Oi! I just got back from two weeks working away in Portugal. I was really pleased with myself, as I only had one day of that stupid chemo fatigue – I drove the 4 hours back home from Gatwick even, with no problems. So, an achievement! While I was there I saw all my friends which was wonderful, and I was spoiled rotten by The Style Queen...she would have dragged me off for all sorts of treats if I’d allowed her to, but I was too tired, and reneged. But she did make me a fab facial and took me to lunch every day – what more can one ask? AND the company have renewed my contract for another year, which is great, so I arrived back exhausted but feeling as if I’d managed rather well. As usual, onward and upward!

Arrived home to discover that I have been voted a finalist in the Facebook for Good contest – this is basically a competition to see who has used Facebook to their best advantage this year – to their own good. I entered a story, telling how I had been in touch with friends from school and old friends from all sorts of countries...NOT expecting to be a finalist at all, just hoping to make Ovarian Cancer a little more ‘visible’. And, lo and behold, I am a finalist! Amazing, as there are literally hundreds of stories, all touching in their own way, and I am in the top five? Incredible! So, while I was away, a cute little video camera arrived (the prize) with which I had to make a video to back up my initial story. Oh dear. I do hate live feed of myself!

It had to be in by 10.30pm today, so you can imagine the frenzy this weekend – trying to put something together that made sense. It doesn’t include all my friends, just the Facebook Brigade, and even then it was hard to put into 3 minutes [the max allowed] quite how much everyone has supported and helped me. Anyway, it’s done now, and we’ll hope for the best – the final prize is €3000 for your favourite charity or €1000 for yourself. I am trying to decide between Force and Ovacome – but don’t need to worry too much about that unless I win, which I seriously doubt I will. But it’s fun trying! And everyone, as usual, has been brilliant, sending pics of themselves and then cheering when the video finally appeared on YouTube...phew...we went to the pub to calm down! Oh and today I got an iPhone!! Whoo hoo – with a 16 month contract. All long term things have been put on hold in my head until recently, but now I am back in the real world – out of the ‘I have cancer and might die’ world. What a relief...

And last but not least – my hair is growing ten to the dozen [my hairdresser in Portugal, Romi, said I have MORE hair than before!] so I’ve had mad highlights put into it. This has to have been the first time in my life that I enjoyed going to the hairdressers. Now I look as if I have a hair style, rather than ‘chemo’ hair growing back. Gotta be a good thing!!

Wednesday, 5 November 2008

oh no!





Wednesday 5th November

Bloody hell. If it’s not one thing, it’s another. This week was the exploding cooker extractor hood. And People Going to Brazil. Oh and by the way Pat - you're looking very interesting here. :o)

Today's Episode is one of my best friends doing a disappearing act. Grr. Fabulous for her, but hideous for me - I think. I may be wrong [I hope so], as we will keep in touch - but it’s not the same. Is it? So, starting from the beginning - Pat is leaving Cinca [where we all work] and this is nothing unexpected really. So, not anything to panic about right? Hmm. Well, maybe a little... A: she has been one of my mainstays this year and I have come to rely on her for sensible advice and just the odd chat when I have become frantic...B: she organises my work. Oh no; panic mode!! Why is it that so many things send me into a tailspin these days? And - how selfish am I? Er - very, it seems, as after I heard her good news, I was I tears on and off for an hour - why? You may well ask. If I were a good friend I would be dancing around the house for her wouldn’t I? Three years in Brazil? Oh yes! How wonderful an opportunity is that? And who wouldn't go for it?

And I am. Really pleased for her. But another part of me is saying; No! Don’t go - don’t cause a change in my already demented life...please can everything stay the same for a little while? I was really hoping that next year would be dull and boring. Or rather – not so much 'dull and boring' as 'the same' - no dramatic changes. Seems not, as it will be full of a new person [which is nice] but lacking a 'old' one, which is not nice at all. But sadly and brilliantly, that’s what life is all about - change, grow, move on. Before the cancer, this was a norm for me; change and evolve, great stuff - now I just don’t really want anything new and exciting to happen for a few months.

You know of course that the Chinese use the expression: "May you live in interesting times" as a curse? I can totally identify with that. Interesting? No thank you! Not this year anyway.

I would just like some peace and quiet where everything just bumbles along - nobody going anywhere new, nothing 'interesting' [I have started to dislike 'interesting' actually] happening and everyone remaining just as they are. Well, this is not possible, and I know that. So - I shall miss you when I am in Portugal - BUT...I shall see you in Brazil!

Monday, 3 November 2008

trying to be normal

Monday 1st November

Currently, I am driving the husband mad. I hate my hairstyle [‘style’? I don’t think so] and can’t seem to get to grips with the fact that I should be ‘grateful to have hair at all’...WHAT?! It’s all very well for people who have hair to say this – and good for them. But if you’ve lost your hair through no fault of your own, it’s not so easy to cope with. In fact, I would say it sucks. Totally. As in; HAVING NO HAIR SUCKS!! get it?? I am not grateful to have hair – I expect to have bloody hair! It’s a normal thing! Not a thing you should have to be grateful for.

If you have short hair - well, good for you, but you made the choice didn’t you? You didn’t wake up one morning with long hair, then wash it, and end up with NO hair – did you? Er – no. You didn’t. So, remarks like: ‘don’t worry it will grow’ don’t go down too well with cancer patients. We also live in the real world - we KNOW it will grow. Doh!! We didn’t have our brains removed with our cancer thank you.

At the moment, I am in ‘hair crisis’ mode – I feel extremely ugly. All the time. It is not feminine to have hair that is 1cm long [or short – depending on your view point] and I have even considered going back to the wig - grr, that’s got to be bad, as I hated wearing a wig, as it made me feel like a ‘cancer patient’ – bah and humbug to that.

So, we go through the surgery – we manage. We go through the chemo – we manage that too. Then, we try to get back to ‘normal’ life – that’s the hard bit. People seem to think that once you’ve finished chemo, you’re fine. WRONG WRONG WRONG. We have to deal with the fact that cancer will always be at the back of our minds no matter what. We also have to deal with a completely different body than the one we had before – and the suspicion that lies in the mind. The suspicion of our own body – well, not too cool to say the least. The one thing you sort of trust is your own body – until it attacks you.

So, I am sorry if I go on about my hair, but it’s because I don’t have much – and the bit I DO have is demented – one more shampoo advert ad I shall go totally mental...

Thursday, 30 October 2008

oops - no it wasn't...



Thursday 30th October

As usual, the husband had his bit of input after I thought I'd finished! And, as usual, it was a sensible bit of input. A ribbon with Ovarian Cancer written on it? Hmm - what does that say? So, I have added the word 'awareness'. Probably makes more sense.




confused dot com??

Tuesday 28th October

So, I am confused. Nothing new there you say. But this is quite aggravating, and I was sure I must be wrong, so I have been checking it out on the internet, and I am right. Surprise surprise!

In the UK, Ovarian Cancer Awareness Month is in March. Right? [not so you’d notice mind you – I thought it was in September]. In the States it’s in September. HOW CAN IT BE IN DIFFERENT MONTHS?!! This is so stupid. Breast Cancer Awareness Month is THE SAME MONTH all across the world. Because as well as being an 'Awareness' month and a fund raising effort - it is also a show of solidarity amongst all women who have or have had breast cancer, everywhere. Not just here. Or there. Everywhere.

Why are we OC girls so disorganised? I am sure they don’t remove our brains when they remove our cancer, so how is it that women in one country are having a different Ovarian Cancer Awareness month than women in another? Who thought THAT idiotic scheme up? Is this foolish or is it just me? Anyway I intend to find out.

In addition, March in the UK is usually freezing cold, so another good reason NOT to have it in that month - September is still reasonable weather over here, so you can still get outside to do runs, walks etc. In March? Ha. Although I suppose we could raise Awareness with massive teal woolly jumpers, thermal underwear and fluffy hats. Not that my complaining is going to change anything, but just felt like having a good moan.

ok, that's it - the final ribbon...






Yay, here's the final ribbon, thanks for all the input everyone! I am now going to slap this onto everything I can. The words are still legible even at 3x3 against a black background.

Anyone who would like a copy for email, web sites, blogs etc. you can simply download it from here if you click on the image above and go to the larger version.

For printed material you will need the Illustrator vector file, which I will upload somewhere accessible [once I find somewhere] and I will then post the details here on the blog. Or just let me know and I’ll email it. It’s only 398 KB (407,769 bytes).


Image: Copyright © 2008 Sandhy Robinson-Jones
May be used free of charge. Selling without prior written consent prohibited. Obtain permission before redistributing. In all cases this notice must remain intact.

Monday, 27 October 2008

lunchtime ramblings...

Monday 27th October


Today I had masses of stuffed pasta with loads of Parmigiano-Reggiano and pesto on top for lunch - which brought me to the unfortunate conclusion that pesto gives me hot flashes. Hmm. Well, I'm not going to NOT eat pesto - so I shall have to eat it with my head stuck out the window. So I probably shan't be eating it in restaurants.

So that's now red wine, pesto, vinegar, tomato sauce and stressing out [or getting cross] that all give me flashes. Initially I also got terrible ones after having a hot bath, now I don’t - odd. Good. They have definitely lessened in occurrence since the chemo ended. I am taking Oil of Evening Primrose, so that might be helping - who knows? I'm just happy not to wake up every single hour in the night feeling like I'm in a sauna...

Saturday, 25 October 2008

another nice thing...


flowers from the Husband - so nice!!

ok, here's the next edition



thoughts please you lot!

yet another bash at the Teal Ribbon

Saturday 25th October

I’ve been promising to send a new version of the ribbon to Kia for ages now, so I decided as today is another miserable grey day, Jones is at work so I might attack it and get it sorted. The dithering designer...

I have come to the conclusion that the 'ribbon' isn't the most important bit when you're making an image for print or screen - the WORDS are. And the colour. We want to get the news of Ovarian Cancer Awareness Month and the TEAL out there. Although I really don't want to see teal food thank you! I sometimes wonder if the girls who are involved in the Breast Cancer Campaigns are just more energetic than us, or if it’s because so few people seem to know about OC that we are so behind in getting in people’s faces. Because no matter how much one might dislike being bombarded with ‘pink’ things, you can’t argue with the result. Yes, pink everything on everything everywhere is a bit aggravating, BUT we ALL know about breast cancer.

Well, best get cracking if we want anyone to actually notice that is Ovarian Cancer Awareness Month in March - if I hadn’t had the beastly thing myself I would never have noticed! Sad state of affairs.

But, getting back to the point, in my opinion the actual ribbon is only important when it's a pin on thing. And Ovacome have a rather spiffy enamel one for sale now - we better get one, as it saves us having little ribbons and safety pins falling to bits in the washing machine [which is what happens to ours...]

So, here's the next version - comments please girls. The version I posted first appeared lime green somehow! So if it's a funny colour, let me know? It "should" be teal and a good solid pink. Posting it again next!

what did YOU do at lunchtime??

Wednesday 22nd October


Today was good fun. I amuse myself so much that I don’t need TV for entertainment! Firstly, I coloured my hair at lunchtime. Amazing - the colour takes ten minutes - so why is it that when I go to the hairdressers it takes an hour?? Or more? Slap it on, rinse it off - Bob's your Uncle. Although I admit I got the blasted stuff everywhere - AND it looked like it was going red so I nearly had a heart attack [you must do this - very amusing watching ones hair turn various shades – hello hot flash and startled face!]. I finally got it off the taps, basin, walls, bath and my ears and I now have a rather respectable dark blonde/brown effect - and without spending a fortune at the hairdressers. I shall get Aj to take a new pic on the weekend. It's becoming rather fun now that it's getting thicker.

Secondly, ages ago I sent an email to the company that makes the GlucOsamine and Chondroitin tablets that I take for my joints. There was a competition for the best 'Love Letter' about their product, to win a bottle of champers. Can’t be bad – it’s alcoholic! So I sent a mail saying I use it because surgery / sudden menopause / chemo joint pain blah blah...[and it has helped me actually]. Anyway, they just mailed me asking:

A: for my address so they can post me some for free [as it's a tenner a box, that's FAB and a kind thing to do], and
B: asking if a 'health journalist' could interview me??

What's a 'Health Journalist' when it's at home?

AND [yes I will get there eventually] I have been paid at last - what a fun day!!!

The other thing I was beavering away at in my teeny head was how fast is my hair growing? This seems a sort of insane thing to try and work out doesn’t it? But for people reading this that are having chemo, it's one of the things you want to know most. How fast will my hair grow back? And everyone's different, but this is a sort of gauge at any rate. So. The last chemo was on the Tue 22 July, and not counting the 3 weeks directly afterward [as they are still the chemo cycle, and nothing starts working properly until after the last week] it will be 11 weeks on 27 October since I started to 'get back to normal'. As in feeling better, having more energy, looking a bit better.

My hair is now about 1cm long on the top. I think it’s growing about 2 millimetres a week, as it didn’t start to grow until after I had been over to work in Portugal for that week – and that trip was a short 5 weeks after the end of the chemo. So in about 6 weeks my hair has grown over a centimetre! Because I have coloured it, it looks longer as well – I reckon I am about 2 months away from Posh’s fab Pixie cut - and I have it for free! Poor old Posh had to pay a fortune...

Saying that, my 'new look' is currently a bit of a nightmare - if anyone actually cut my hair like this I would do unspeakable things to them - but as it's hair and better than none, I love it. Makes me laugh every morning, and I still can't believe that after 35 years of having long hair I have less hair now than when I was 2. The problem is that it is shorter on the sides than the top. The sides are growing flat against my head. Good, no problem. But the top is growing straight upward! whaahahaha - I look like Grace Jones when she did that video where the car drove into her mouth - I have a flat top! AND nothing but nothing [well maybe staples!] will keep it flat or spike it - my hair is so thick, it will not do anything except stick up! So, for the photo, I may iron my head first :o)

See the very end of the video – it’s my hair!




Tuesday, 21 October 2008

an interesting article

Tuesday 21st October

see here for one more thing to be aware of: adhesions

more things to think about and ask about and wonder about

Tuesday 21st October

These last two weeks have been really great for me, apart from a few worrisome blips for some of my friends. My Em has been having some idiotic things going on, Tracey has been having the week from Hell, and Clarinha has been having all sorts of horrible painful tests. Thankfully the doctors eventually discovered what is wrong with Clara – much to our relief, it’s a manageable complaint, even though it’s not very nice, and she will now be treated and start to recover.

But as with everything apart from a cold or a headache, recovery takes a long time and requires patience [yes!! colds and headaches DO NOT count as being ill!! well, well...]. A difficult one when you are trying to hold down a full time job with travelling involved, and a home to clean and keep up, plus all the other everyday responsibilities. In the UK we personally can’t afford to have 'help' in, as most people here can’t. Oh the thought of some kind woman arriving and doing all the cleaning, shopping, cooking - imagine!! That would be amazing. Isn’t it astonishing what we can all manage - if one were asked in advance to do it, one would probably run away screaming! The trials and tribulations of being alive no? Oh, and NO skydiving for me thank you very much! I have enough trouble getting up hills – falling out of an aeroplane? Shriek!! Go Nat go!

So, this week;...obviously last week we had our ‘Great News’. And this week was Andrew’s birthday. And Mum’s birthday on the same day! Typically I bought her a lovely card which didn’t arrive! grr - beastly post. The one thing you want to get there and it doesn’t? Bah! Sorry babe. At least it arrived eventually...

Anyway, I just HAD to celebrate – broke or not [I haven’t been paid this month so far! super...NOT.] God I just hate being a freelancer sometimes – it seems so easy for people to treat you like dirt. Anyway, I really needed to do something nice for Aj. He has done so many nice things for me this year [without even realising it], and I wanted to celebrate. Celebrate Andrew’s birthday, celebrate my remission, celebrate just being here and being happy about it. So, our new 'local' has rooms. And I booked one! Madness, as it’s only a few miles from home, but it was such fun! We sat in front of a lovely fire all evening, just nattering away, drinking wine, reading the newspaper and generally slothing out. I realise that this is not ‘usual’. We have been married now for eight years [and known one another for over ten] – by this time shouldn’t we be bored with one another’s company? Well, we’re not. We can sit and waffle on with the best of them – and this means so much to me. It’s like being out with my best friend – in fact, it IS being out with my best friend. Anyway, the next morning we leapt up and had a fabulous cooked brekkie in the pub, then shot off at 8.00 to get to work – it was an excellent way to break up the week – it felt like we’d been on holiday, even though it was just one night away, and just up the road. See here for the pub: poachers inn

Saturday I went to see my ‘English’ hairdresser [ee – I have two! One here and one in Portugal and luckily, both of them are darlings] for some advice on colour. I really can’t be doing with running around looking like a piebald pony any more. It’s gross. Plus my hair has gotten all excited with itself, and is now growing in twenty different directions at once. Interesting!! It was good to get professional advice, and I am now the proud owner of a packet of proper hair colour. Jenny [hairdresser] insisted TWENTY times that I do a patch test [normally I wouldn’t] so I now have an interesting yellow circle behind my ear. Probably a good idea, as the ‘biologically friendly’ colour I used last week was totally useless and I need permanent colour. Have to wait 48 hours to be sure I don’t react to it. We will see what happens, but I am not too worried, as Jenny said to just race in there if I have a catastrophe...

The main thing on my mind though is Emmers results – but that will be resolved this week. yay!

wondering about: adhesions [eh?]
asking about: HE4
thinking about: what actually kills you in the end? does it or doesn't it? making a will on friday, so worth thinking about? or not??






Tuesday, 14 October 2008

more waffle – a bit of confusion about remission

Tuesday 11th October

It’s very peculiar – I have been told I am in remission [how great is THAT?? whaahahahaha], and I am thrilled of course, but I think people may think I am not thrilled enough. They’re right - I am not jumping around the room quite yet.

It’s odd, I’m over the moon that there is no cancer to be found right now. My blood tests are great, CA 125 at 7 is brilliant [it’s actually gone down from 9 at the last test] – the norms are 0 – 35, so I am well within them. But I think that it will take me a long, long time to be at ease. Being betrayed by your own body takes a long time to recover from. Plus the fact that the CA 125 test is not definitive – it’s just a marker. But for us, it’s important. And the remission means ‘right now’ – it does not mean forever. So, making the best of the moment is good!! But hard in a way.

Sadly, you know in the back of your mind that the beastly thing can creep into another part of you if it wants to – lungs, liver, kidney – even your throat - you know that remission does not mean ‘cured’, and you know that it is out of your control. We are warned that any lump or bump could be serious [hello paranoia! jesu, my poor GP is in for a life of misery. More so the surgery’s general secretary, she is a total bitch anyway, so that’s something to look forward to!]. No matter what all those so called non medical ‘experts’ [hihihiihh] say [I am sure NONE of them have had cancer! experts? pah!!!], eating this and drinking that and ‘doing’ the other - they ‘may’ help, but at the end of the day it seems to be down to Sod’s Law. People who have never touched a cigarette in their lives get lung cancer – what’s that all about? People who have really healthy diets and lifestyles get it – what’s that all about? Personally I think it’s catch as catch can – you get cancer or you don’t and that’s that. Journalists need to spend some time in cancer wards – perhaps then they wouldn’t be so quick to publish all these silly ‘miracle’ cures. Perhaps then they would try to find people who really have survived, and publish TRUE STORIES as averse to ‘fairy tales’ that feed peoples imaginations instead of FACTS that actually help them. All they need to see is the children – perhaps that could stop even their voracious appetite for thrills without result. The children truly touch your heart – I deny anyone to see them and walk away without some kind of true feeling.

Andrew and I are in a strange state – thrilled obviously, and yet still afraid. Both of us. I went to turn the bed back last night and discovered a spot of blood on the sheet under Andrew’s pillow. This small thing made me cry – Andrew chews his fingers terribly when he’s stressed. I know that spot of blood is because of me. And it breaks my heart that I am putting him through this. I am sure I am not alone when I say that I feel guilty. Guilty for not being the woman he married any more, guilty for causing him so much stress and worry – guilty for being ugly [in my own mind – I know this – I know he doesn’t think so], for being in pain, for being cross for no reason, for a million things. And yet, saying that, I know I don’t really have to feel that way, as he is there for me every minute. It’s just a stupid state of mind that I need to get shot of. I am very lucky to have Andrew, and I feel so bad for all the women whose husbands are not as understanding and kind as mine.

The other thing about remission is that one worries about everyone thinking you are now ‘OK’...hmmm. Interesting thought. I am ‘ok’ as far as everyday things go, and as long as I am within my own environment – but I still get the dreaded ‘chemo’ tiredness, I still have those horrible moments of being unsure [I believe the expression is ‘my guts turn’] when I have to meet people I don’t know. No!! I do not want to do this. But I have to. Although actually when I have to it’s not as bad as I think it will be. Travel is a total nightmare, as one has to haul a suitcase and deal with a LOT of strangers – very stressful, and extremely exhausting.

The main problem being the hair. Hmm – at the moment of course I am starting to have hair again. Fantastico!! BUT – I have hated having short hair since I was about 12. The second problem is the facial hair – whaa! This is not normal!! Although according to Dr Hong, it is. So girls out there, why the hell didn’t you warn me?? Apparently it’s the norm for one’s facial hair to grow in rather MORE than usual if you have been on Taxol. Oh yay – one more humiliation to add to the rest – now I am growing a beard?? Not really, but the tiny facial hairs of yore are now a lot longer and thicker than usual. Luckily for me, mine are blonde, but it still makes me very self conscious. According to Dr Hong, this should start to disappear after about 6 months. AND according to my beautician, this is true and I should wait it out. It’s all very well having a great beautician but really, couldn’t she just lie??? She refuses to depilate my face until at least 6 months...bah.

Thursday, 9 October 2008

good news from the AC camp!

Thursday 9th October


Well, the holiday was absolutely fabulous. I don’t think I’ve ever had a better one. Andrew found the most amazing apartment right at the side of the River Douro in Ribeira [Portugal]. We had a huge veranda, and could sit and watch the boats and people going by, the sun setting and rising – the weather was perfect, 28° and sunny every single day. I amazed myself by being able to stomp merrily up the hill to the town centre [very steep!!] and managed the 6 flights of stairs to the apartment reasonably well too [rather a lot of puffing on the 4th flight – not to mention legs that felt like burning lead!]. Thanks to Julie I think – my circuit training is paying off! Andrew was funny, as he was pretending that he was also shattered at that flight – I know very well that he lifts tiles every day and could probably run up them singing an aria at the same time. But he made me feel better anyway. As Nat says [and it always makes me chuckle]; My Favourite Husband!

While we were there I really did manage NOT to think about cancer, apart from one evening when I just went into one, very upset about the fact that Andrew is stuck with a wife with all these tedious problems – but hey, as girls, we are allowed to do that anyway right? And as always, Aj was a brick, so that was ok. I think it wouldn’t be normal if we didn’t flip out occasionally.

We had a little get together at the apartment, and it was so good to be ‘normal’ and go a bit mad. With people who accept what’s happening and can mention it in ordinary conversation without getting all maudlin about it, plus those lunatics love my hair...hmm, therapy may be in order methinks! One more person rubbing my head and I would’ve been bald again!

Lots and lots of laughter as usual – it’s the fault of my friends in Portugal that I have so many laugh lines. Well, I’ll call them that anyway...I think I’ll make them club together for a face lift for me as punishment...lots of Planalto [thank you Marina!], gorgeous freshly cooked Rissois [who else but Pat the Little Chef?], a fab Tortilha [aaargh! so bad you weren’t there Bella] and the great company of a new friend plus my usual bunch of crazy people. Only one missing, but that was the fault of Cersaie. Boo.

Anyway, waffling away as usual – the main thing being this: I am in REMISSION!! We arrived back on the Sunday, Monday I went for my blood tests [got into trouble for that – seems they only process them every Tuesday, so mine were rushed in and I should go a week before next time. Ok – salute, salute!] and Tuesday I went for the first of the 3 monthly check ups for the year.

WHAT a nightmare Tuesday morning! Thank God for Pat being so patient or probably my head would have exploded. She gave me some work that is just repetition and called me to be sure I was still sane – and I was still struggling to do it. I was not so much ‘stressed’ as completely deranged. I had a hot flash every hour, my heart kept trying to jump out of my ribs...you know what I mean. It was more ‘anticipation’ than fear – but once I arrived at the hospital, I was so calm. My brain goes: “ah, good, we are back where if we try to drop dead someone will save us, so we can chill!” So I was quite calm when the nurse said to me that I would be seeing the registrar. And I was also quite calm when I told her that actually I WOULDN’T be seeing the registrar, I would be seeing Dr Hong, thank you very much. Registrar?? I don’t think so babe. A small tussle, but we succeeded in the end, and I did see Dr Hong. She did an external and an internal exam [eww – yuck] and pronounced everything to be fine. And my CA 125 is now back down to 7!! Hooray! No more B&H for me thanks...anyone reading this, if you go anywhere, send L&M blues [lights] to me! I will reimburse heh heh. My CA 125 went up when I changed ciggies [yes, yes, I KNOW I should give up, but you try it in the middle of this little lark!]

So...hmm, where was I? Oh Yes!! We got the good news and decided to celebrate...er, difficult! We were so exhausted from the relief that really we just had a quiet drink and collapsed. Celebrate another day. Celebrate every day! Why not eh?? We all should...for no reason at all...

ho hum and BYE BYE for a bit!

Saturday 27th September


Bloody results!! I swear, our lives seem to revolve around them. Well at the moment mine does, and I am hoping this will lessen as the months and years go by. I am driving myself a bit mad at the moment, wishing the time would pass more quickly in order to arrive at the first of my post-chemo check ups, at the same time wondering what’s up with my head, as I am about to go on holiday, and who in their right mind would want the first holiday for 9 months to go quickly? Er – no-one! So I am now in holiday mode! Last blog before I go, then goodbye cancer until I come back. I am going to think about nothing but having a rest, growing my hair and generally being normal. Well, what is classed as normal for me at any rate!


So, A had her results this week and she is in remission. The best news!! At first I thought she had lost the plot – remission? What? Isn’t that only after 5 years? [by the way it’s quite normal for we cancer affected lot to lose the plot on a regular basis]. I was confused, so I did a bit of research and it seems it’s a commonly misunderstood term, and I misunderstood it. Remission, according to Cancer Research UK, www.cancerresearchuk.org is this [and I quote]: "If a cancer is in remission, there is no sign of it in examinations or tests. Doctors say 'remission' instead of cure because they cannot always be sure that all cancer cells are gone and the cancer won’t come back. Generally, the longer the remission, the less likely it is that the cancer will come back". Oh, and sorry girls, it IS a bit of a pink site! We really need to get going on this teal thingy and I intend to be led by Kia in this, as she has ten times more energy than me right now.

To be told I am in remission will be fabulous, and as far as I am concerned, that is what is going to happen, which is why I can stop thinking about this for the next eight days as soon as I finish here, as I am about to start packing and must remember to pack shoes that don’t torture my feet. Havaiana’s! Upieee! [for the uninitiated, these are Brazilian flip flops - but the BEST flip flops ever].

As usual, I digress. This morning I have been busy-bodying on everyone else’s blogs. Keeping up with what’s happening once you’re tracking a blog is easy, but it’s going BACK through their blogs to find out what happened initially that needs time, so that’s what I’ve been doing. Munching my toast and either laughing or crying, and realising how lucky we are here in the UK, to have the NHS [the National Health Service]. And how all the things that happen and are happening to me are happening to other people too. They also think strange thoughts, go through ups and downs that other people may find unnerving or unreasonable. It doesn’t make it any easier for me to deal with my own chaotic emotions to know this, but it certainly makes one feel less out of control and less alone.

I found a new term too, which I find most amusing. AC and BC – After Cancer and Before Cancer. I think we should all be allowed to put those letters after our names, I shall soon be Mrs Robinson-Jones, AC. I can’t think why that amuses me, but it does. Off for Not-Thinking-About-Cancer hols now! tata!

Saturday, 27 September 2008

something to be aware of

I thought it would be good for everyone to see this article here, it has new information about talcum powder which could be relevant to some women.

http://www.dailymail.co.uk/health/article-1063040/Cancer-alert-talc-Women-using-powder-day-risk.html

we need to see more of the TEAL ribbon please!


anyone who wants a copy of this, let me know, it's a high resolution .eps file, or I can send it as a .tiff / .gif / .PDF or a .jpeg.


And any suggestions for improvements on it will be welcome.


I am going to start plastering it on everything! ;o)

Tuesday, 23 September 2008

nine weeks to the day...

Tuesday 23rd September

It’s so hard to believe that it’s 9 weeks to the day since the last chemo session. Only 6 weeks since the end of the last cycle, and yet I already have 2mm of hair, eyebrows like I never had in my life and even my eyelashes are growing back. The worst thing is thinking about WHY I have such short hair - so, I shan’t. I have travelled to Portugal and managed to work a week there without letting anyone down [I hope], survived Passport Control and meeting all the people who knew and last saw me before all this happened. When I seemingly had not a care in the world compared to now, and when I had a great mass of curly hair.

My stamina is building thanks to Julie and my own perseverance; I can do most everyday things like hanging out the washing, making the beds, cleaning the floor etc. as if nothing has happened. Yes, I am much more tired after doing all those things than I usually would be [back in the 'World Before Cancer'], BUT I can now DO them! It’s amazing the small things you don’t appreciate until they aren’t possible.

I understand that the majority of people take about 6 months off whilst they are going through surgery and chemo. Then when they start back to work, it’s on a part time basis, half days etc. in order to allow them to get back into things gradually. And to be honest, I would have been so grateful if I could have done that. But as a self employed freelancer, it wasn’t possible. No work, no pay.

I have worked every day this year, as per usual [all be it a little eccentrically, as I was sometimes at work at 5 in the morning, and asleep at lunch time!]. I used my paid holiday for the days I had surgery and the days I had chemo [contractors do not have 'sick leave'] – I was very grateful to the manager of marketing when she allowed me to ‘work in’ some of the days – that is , instead of working the Tuesday I had the chemo, I would work the following Saturday. A day ‘in lieu’. That has allowed me to have a bit of holiday time left over to take at Christmas. The reason I mention this is because I would say to anyone who is going through this; it is better to try to work if you possibly can. I am lucky, as I have been able to work from home until last month, as all my colleagues were very supportive of me. And the amazing thing is, they didn’t need to be. I am a contractor - they could have simply ended the contract. Yes, sure, everyone is going 'horror of horrors, why would anyone do that', but this is business. Business doesn’t have a conscience. But...

Working, even when you are slower than usual and every small thing seems a challenge, even getting UP seems hard some days, keeps you in touch with reality. It FORCES you to think about something other than the cancer. You have to talk to people on the phone, reply to emails, achieve deadlines. With the support of those around you, it’s possible. Obviously without that support it wouldn’t be.

I honestly think that if I’d had all this time off I would have been quite miserable. No normal communications with people who knew nothing about what I was going through, no pressure to think or stretch myself. No challenge – the crux of the matter I believe. If there are no challenges in your everyday life, then what? Yes, sure, cancer is a challenge in itself, but it can’t be the 'be all and end all' of everyday existence – if it were, well I think I’d go crazy. How can you feel satisfied at the days end if you haven’t achieved anything worthwhile?

gibbering away

Tuesday 23rd September

With 14 days to go until the first 3 monthly check up, my mind is still gibbering away and affecting the Rest Of Me [and probably those around me, long suffering souls that they are]. The Rest Of Me is unfortunately unable to escape it’s evil blathering. I think it would be rather nice to be able to remove one’s head every so often, check it in like a hat, take a break and collect it later. Thanks, yes, Head No 14, the one with the Grade 1 haircut, just pass it over and I’ll dust it off and reattach.

Just to have a break to think about nice things, not THINK or TALK about cancer, and try to remember that other people have things going on too - I find this very hard at the moment. I have become rather a thoughtless person lately I am sure. Even when I try to be thoughtful, half way through I forget what it was I was trying to be thoughtful ABOUT...can’t win eh?

But today has been good - I have been waiting for A to get her results, she had a CT scan last week, and has been chewing her nails ever since, and today was the Big Day. This is where the communications between all we girls who are battling OC becomes a blessing I think. I was so worried about her, and trying to cheer her up while she waited that I forgot about me - great! Finally got her results, and she is clear! What a relief, and I can’t imagine why it should be so, but the fact that she is clear makes me feel more confident that I will be too.

It’s not normal to be thinking about your Life this much. But gone are the days of blithely expecting to live to a hundred, making long term plans has been put on hold for a while, apart from short term things like next weeks little holiday [for which I am eternally grateful I might add! a holiday, at LAST]. One half of my brain is merrily carrying on with life as if nothing horrible has happened, or will happen. The other half is saying 'don’t be stupid, expect the worst at least you’re prepared'. In the middle there’s me, going: "Will You All Kindly Shut Up!?".

The day we go on holiday I am leaving my brain here. It can cogitate away to itself and leave me out of it for a week! I shall be in bimbo mode and Aj can do all the thinking.

In the meantime my hair is growing with a vengeance - good old hair, mine's always been like a mad plant and cost me a fortune in hairdressers bills. Now I can’t wait until I can take the Aforementioned Head to the hairdressers. Just to decide what to do with it? Someone did suggest I dye it green and print ‘Dunlop’ across the back - I am a bit tempted I must say! Tennis Ball Jones, here we come. I have stopped wearing the wig, and just wear a cap or scarf, as I am sure my hair doesn’t want to be flattened all day long. I am hoping it’ll be like a weed and grow quickly toward the light!

And by the way, people don't really seem to notice such short hair. Of course you get the odd one that'll give you an scary look - but eventually my hair will grow back and I'll look normal, and sadly they'll still be rude and thoughtless, so who cares?

The odd thing about the re-growth of all the other hair is that my skin is rough wherever it’s growing back. Not very pleasant, and I am hoping it’s a phase that’ll pass. Plus the teeny weeny hairs that grow on my face have grown in quite a lot more noticeably than they used to be - a bit worrying! Hello, a new complex to add to the others...my face is like a peach. But, there’s always lasers so I don’t care. I will wait and see what happens, as it seems that it’s quite common for quite a bit of hair that comes back to fall out again, change colour or do sundry other mad things.

Hmm - that’s something to look forward to isn’t it? I suppose variety is the Spice of Life, and that’s certainly been true this year - variety that is. Certainly can’t complain that it’s been boring. And having met such a great bunch of girls along the way has been a real blessing too. I now know I am not the only person in the world who can Talk for England heh heh.

And, today I had more flowers from P across the road - he sent them round this evening with his daughter. The others were only just finished, so now I have another lovely vase of Dahlias next to me on my desk. I tell you what, he certainly grows superb Dahlias! So sweet...and so cheering!

Sunday, 21 September 2008

today...


chemo effects linger on

Saturday 20th September

Ah chemo – 'the gift that keeps on giving'...since the last nuking session was over, I keep thinking I am fine. Because I do feel so much better. But then my poor battered body gets cross and reminds me that I am NOT fine, I AM still recovering.

Today was a classic example of this - first I was clipping the hedge this morning, full of beans, and I bumped my head on a branch - not the normal 'just bumped it' thing – the 'chemo style' bumped it thing - blood everywhere. So now, as well as looking rather butch due to my Grade 1 hair style, I have a nice scabby bit on my forehead! I ask you...spraying iodine on THAT was rather eye watering! ouch! Roll on the day when I am healing properly again. At least by this point I am not getting a big bruise there as well. People would think Aj is battering me! Scabs and scars everywhere at the moment.

So, Vicky, Grace and I went up to the town [today has been glorious! sunny and hot - perfect sandpit weather] and wandered around window shopping etc. We caught the bus up, had a sausage roll thingy sort of like a hotdog as we were starved, checked out the shoes and clothes which we couldn’t afford, met up with Jen and Martin, then had a fabulous pair of balloon butterfly wings made for Grace and afterward, wandered down the hill to the real McCoy vintage clothing shop – this used to be a doddle for me. But this time, by the time we reached the McCoy, I was shaking, having palpitations [is that the word for your heart beating really fast?] feeling faint, cold and generally panicking. Andrew was meeting us after work, and all I could think was "hurry up! I have a bad feeling about this!". Thankfully after a cup of coffee and a huge lump of coconut cake [and some of Grace’s carrot cake too], I started to get myself together. By now Aj had arrived [sigh of relief...] and I could relax knowing that if I did fall head first into a rail of clothing, he would rescue me. and also look after everyone else.

It is SO frustrating. The sudden attacks of total exhaustion, the other odd things that happen like unexpected and unexplained nausea, a stabbing pain in the groin, the horrid hot flashes, sudden tears and being upset about something that is actually quite nice...grr! Not that I am complaining about the chemo - that would be foolish as it probably and hopefully has saved my life by eradicating the tiniest bit of cancer that may have lingered after the radical surgery. BUT, when you are trying to get back to 'normal' it’s a right bugger to keep encountering these effects – the problem being that because I WISH they were gone, I THINK they are gone – but they’re not. Eventually they will be, I am just too impatient I think.

Just thought I’d let you know that 'being better after chemo' takes a much longer time than one might think.

Saturday, 20 September 2008

family

Friday 19th September


This weekend we have the girls down – my step daughters, Jenny and Vicky, and wee grand daughter, Grace. Oh and poor beleaguered Martin, Jenny’s fiancĂ© [he is very worried about their cat, as its missing – I can understand this totally – my cats were like my children!].

I always stress so much when they are coming [I can’t imagine why, as all they care about is ‘doing stuff’ with Dad]. Run around cleaning the house etc But this time I am far more chilled [for me anyway!!] oh shit, am I happy or something?? YES! I love it when they come down, it fills the house with voices and apart from that, they are SO supportive – at their age this is unusual. They can’t possibly get their heads round all this crap that’s happened to me. And yet both the girls did the Race for Life almost as if this was a normal thing for them to do – for me it was amazing. It really touched my heart that they did it – Vick especially, as she is not ‘Sporty Spice’ like Jen is...plus she took Gracey – not exactly running material at 4!! But they all made it, and I was SO proud of them. I can’t thank them, as it would be embarrassing, but on here I can say what I like, so I say: THANK YOU girls!! You have no idea how much that meant to me. Love you!!

Friday, 19 September 2008

the flowers


neighbours

Friday 19th September

I want to say thank you to my nice neighbours. I met our neighbour G on the weekend while I was sweeping the driveway. He and I had a chat and he hadn't realised what was happening to me, just assumed I was away in Portugal a lot more than usual because I haven't been out and about much doing the garden etc.

We had a chat and he was very encouraging and off he went. But he obviously told HIS friend all about it. This man, P, who I have never met before, lives across the road from us. On a day this week that I was feeling pretty low, P appeared at my door with a glorious bunch of Dahlias tied with string from his allotment. He doesn’t know, me, but he said he thought they would cheer me up. Cheer me up? I was so touched - small things can make a huge difference. A beautiful gesture.

Our other neighbour replaced our fence on his own when it was blown over early in the year [normally this would be a team effort, as it’s a shared fence], and offered to help pay when I had a gardener in to have OUR trees trimmed. These seem like silly things, but they aren’t. They make a huge difference to day to day living.

On the opposite side of the coin, we have neighbours at the back of our house who appear to be constantly drunk. They smoke outside in their garden rather rowdily all hours and days of the week. Last night I went to draw the curtains in the bedroom which overlooks their garden [unfortunately!], and they obviously found it hilarious that I have no hair [I had nothing on my head at the time, not thinking that people would be looking in the window]. They started making catcalls and laughing at me. I was so startled I just stood there gaping at them! I must have looked a right twit with my mouth hanging open in shock. All of them are young women, all of them should know better. That made me VERY angry. Absolutely furious. I think I was supposed to be upset, but I wasn’t - I wanted to go round there and explain to them in no uncertain terms exactly WHY I have no hair, how totally NOT funny it is, and that it could happen to ANY of them. Oh, and perhaps cut all their hair off at the same time hehe.

I wonder if they would be quite so 'brave' and mouthy if we were actually face to face. I am sure they are just normal young women when they are sober, and can’t imagine that they wouldn’t have felt embarrassed by their behaviour. But then again, perhaps it’s normal for them. Who knows?

Amazing how the little things can affect you - some days the big things seem easier to deal with.

Wednesday, 17 September 2008

the NOTES - beware those of a queasy nature!

Thursday 18th September


Ninth week after last chemo and I am starting to feel as if I am getting back to normal. After not posting for ages I think my brain has gone into overdrive and I need to put loads of stuff on here! I forgot to mention that I requested a copy of all my medical notes [or did I? oh well].

This is a bit of a palaver, as they don’t just let you read them, you have to get permission from your doctor, then pay a tenner for the photocopying. I was a bit incensed by this at first, as they are, after all, MY notes. But upon a little thought [and especially since reading them] I now understand why. Usually you have to read them in the presence of your doctor; this is so that anything that distresses you can be explained properly. I also wonder if it’s due to the fact that doctors seem to have the most abominable handwriting in the world! For such a brainy bunch, you’d think they’d be able to write clearly? Apparently not.

Anyway, got permission from Dr Hong [I think she is used to me by now and knows that I need to know everything] and filled in a few forms, and they arrived in the post while I was in Portugal. Having quickly learned to read what appears to be a mad persons scribble, I ploughed through the notes. The Jones Rosetta Stone!

In January I had about 4 pages in my file - now I have a file about an inch thick! Incredible. At first I didn’t want to read them, and they sat on the desk for a few days until I got into the right frame of mind. You never know what you might discover by being curious. You know what they say about the cat... Finally read through them, and I am absolutely amazed at how many people are involved in this type of thing. It’s a miracle how they all coordinate with one another. I also now understand why it takes them 3 weeks to get organised to do surgery. AND I know a lot more about my operation and the cancer than I did. This is a good thing as far as I am concerned, but I certainly wouldn’t recommend it to everyone.

There are pictures in there from the initial sound scan. Quite odd to be looking at my own insides. And I didn’t realise this all kicked off as far as the hospital etc was concerned, on 30th of January. The time has flown by this year. At that point my CA 125 was 566. By the time I’d had the CT scan and all the other commotions, it had risen to 1149 by the 29th of Feb. That’s fast, and it seems to have been of concern to everyone that the tumour was growing so quickly too. At the time everyone seemed so chilled out.

It cracked me up to read that this was "elective" surgery. What? As if anyone in their right mind would choose NOT to have a huge malignant thing removed from their body? I suppose it’s possible, but NOT on Planet Sandhy that’s for sure. Then came the Total Abdominal Hysterectomy and Bilateral Salpingo-oophorectomy, with the Infracolic Omentectomy...good heavens, how do doctors have a quick chat at tea break? All these humungous words. Enough to make you choke on your ginger biscuit.

3rd of March was the surgery - it seems that after they chop you open [the polite term appears to be: Lower Midline Routine Entry – 'routine' for them maybe!] they wash out your pelvic cavity at the start of surgery. They send that fluid for cytological examination [they check out the cells]. I had images of the Fairy advert – "Use Fairy, for soft hands and a nice clean pelvic cavity". The immediate post surgical 'impression' was that I had Stage II Ovarian cancer, but that obviously changed once they’d done the biopsy, as a few pages later, I was a Stage IIIb. Renninson removed everything, but I didn’t realise that the other ovary was also abnormal, and there were tumours elsewhere as well. For my peace of mind I am glad to see that everything was removed. Good riddance to that then!

3rd of March they did the histology report on all the bits that had been sent over. What a job - yuck. Imagine dissecting someone else’s innards? The words 'sliced' and 'dissected' don’t exactly leave a lot to the imagination either, reminds me of biology classes....all this washing, slicing and dicing...shriek! So, I have a few questions for Dr Hong on the 7th October, but nothing very urgent. Good for me that we have the never ending info on the internet. One site actually explains HOW to do this kind of stuff - just in case you forgot to go to medical school?

So, ask for your notes ONLY if you’re quite sure your stomach can stand it! Ah, the adventures of The Ordinary Woman...just think! If this hadn’t happened I would NEVER have known where the Pouch of Douglas is!! [well, WAS now]. Wow...what a loss that would have been...

only [?] 19 days to go

Thursday 18th September

After our holiday, the next ‘event’ to deal with is the first of the years’ four 3 monthly check ups. It may be that it’s only [or not ‘only’...depending on the point of view] 19 days until the first one, but it is doing my head in a bit. One minute I don’t think about it at all, the next I can’t think about anything else. I wish I could stop thinking at all some days. It seems AGES to wait, yet seems to be approaching at speed. Whereas the holiday seems to be taking ages to arrive – how is this possible eh? Two time zones in one head? Although after this year, nothing seems impossible any more!

A friend put this really well: "the big picture vs. the day to day". One minute I am serene as a Zen master [in the day to day bit], the next I am wondering what my body is up to now and trying to prepare myself for the worst [the big picture bit], whilst also trying to be positive and concentrate on the fact that I will be 100% clear. And saying that, I feel better than I have felt for ages [over a year I’d reckon, not including this one] so I don’t know what I am worrying about. Which might be the problem actually...

Better to be prepared for the worst? The underlying worry being that the cancer had spread onto my bowel. Niggle, niggle in the back of my mind. Or is it better to hope for the best? The positive aspect being that I have now read all my medical notes, and they say without deviation that the 'debulking' surgery [eww! thanks for that Mr Renninson - makes one feel like a cow] was extremely successful. Bah! I will just do both - multi tasking is becoming a lot easier now that the chemo is finally starting to clear out of my system heh heh. Probably the best plan is to just colour my hair and forget about it!

I now have hair growing as you can see...I can’t explain how this has helped my self esteem. I am still trying to sort out the weight gain and the scar problem. The scar will never go away, but it can definitely be improved upon. Having no muscle tone in your middle is not very attractive at the best of times.

As you know, I have my Personal Trainer [Julie] come every week. Until last week I hadn’t bothered much with that except when she was here. But last Wednesday I suddenly realised that it was me that had to do something. No-one else can help me and the fitter I can get, the better my body will be able to cope with anything [the big picture again! have to think about the old bones now that I have the menopause]. Oops how unfortunate; I have to actually get off my lazy butt. Oh, and I really don’t feel like it I can assure you - I am NOT a great fan of exercise.

But having made the decision [yes, I know...again!] I am now behaving myself and do something active every day. If I don’t do anything I feel guilty. If my diabetic friend can take up kick boxing, then I am sure I can do this circuit training! And it definitely helps to have Julie come round, as I know I wouldn’t do anything at all if she wasn't due every week. Surprisingly, I am already at the point where I can do things I couldn’t do when we started. Building up my 'core strength' apparently...groan. And it’s a far cry from when I’d had the surgery and didn’t think I’d ever be able to do anything properly again.

oh blah de blah [blimey I can’t half waffle on!]

Wednesday 17th September


upieeeeeeeeeeeeee!! soon we will be on holiday! OMG – the very first time in this revolting, hideous year that we will actually have a WHOLE week off! To do nothing! No mobiles, no pc’s, no WORK! Working 365 day a year is NOT GOOD!! For anyone. Let alone people on chemo. Merde!!! I am SURE it makes you either ill that you may not notice, or eventually you just explode like I did [perhaps not quite so violently!]....eee! Not a good plan!! So inconvenient to have to be chopped in half I can assure you! This is a bad idea!

Bloody hell, I am becoming what I hate – a tyrannical, overbearing twit. Hmmm. Sorry about that!

To recant this year. I have been having mainly surgery, then chemo – oh, and a bit of dementia in the meantime....what a year! Horrible – but I have found a lot of good things, and [sadly] quite a bit of bad. Mainly good though, so I can’t complain!! And I won’t! Mostly the friends I thought were brilliant and I could depend on for anything – well, they have [nearly] all been amazing. Then you get the friends who you think you can count on 100% - ho, ho – forget that peeps! It doesn’t work quite like that at all; when you really need friends, some of them really startle you. Some of them are not really friends at all. But you can’t tell them can you? Nooo – best to be nice. Isn’t it? Hmmmm.

BUT I have some great new friends – supportive and strong – amazing in this context where you would expect people to be needy – ha!! These girls are strong. They are motivated to live, like I am – being told that ovarian cancer kills most women, well it can really do your head in you know? BUT – we are NOT going to be one of those stupid statistics...oh no. Not chance in hell. Not a chance!!! WE will all be here in time to see Em’s 5 kids grow up – of this I am sure. Completely.

check it out!! the best bit....HAAAIR!!!

Wednesday 17th September


ok this is the hair; 6 weeks after the last chemo cycle - not too bad girls! oh, and notice I have eyebrows too! amazing!! the body that attacks you [grr] suddenly gets with the program and grows hair - why doesn't it understand about cancer and kill it eh? ridiculous...but not something we can control. So far.
And yes, I am in stitches here - Jones could NOT get a good pic of me....