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 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, 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, 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!