thinking too much?

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

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

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

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

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

Get that horrific wig!

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

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

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

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

This time last year...

7th July 2009

OMG!! I can't believe it...it’s almost a month since I’ve blogged. I MUST be having a great time right? Well, it feels like it!

There's been lots of traffic on my blog recently for some reason, and I clicked on one of the search queries, to see what had brought ''the USA'' onto a specific post. The WHOLE USA?? Sometimes it says ''Europe'' - does that mean that the whole continent decided that my blog would be worth a gander? It would be fun if it actually showed who had been on the blog – but it just shows the city, country, OS, time of arrival/departure and the way they arrived on the blog. For example by searching for ‘wine’ and ‘ovarian cancer’ [you’d be amazed at how many people search THAT!] Or ginger and OC.

Anyway, enough foolishness...the link took me HERE...

A year ago I was soon to have my LAST chemo session. I am amazed – an entire year has passed! At that point I really didn’t think I’d ever be normal again. Yet here I am now, my hair is almost back to normal [hooray!! curls again and no more torturous straightening the stuff!] doing circuit training three times a week, gardening, driving for hours, lifting and carrying, travelling all over the place...generally having a really nice life. I feel better now than I have felt for 2 years. Carrying a big fat cancerous tumour around was pretty knackering. The very last chemo was on Tuesday 22nd July 2008.

Isn't it amazing? The first thing you think with the diagnosis is: ''I am going to die''. But now I just think; everyone is going to die – I will die when my time comes. I don’t worry about that so much anymore. Hmm. I lied. Perhaps in the middle of the night when I can’t sleep. That can be bad.

And here's me now - nice and brown, look!! Hair almost back to normal [a bit short but do I care? er - no!]

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!

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!

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...

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!

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!

what happens on the last one...other stuff

Saturday 9th August

I forgot to mention some odd things - one being that every time I even bump myself slightly I get a wound or a bruise - the wounds, no matter how small, take an age to heal and bleed all the time and I am like Michael Jackson, plasters all over my fingers! I have a spray can of iodine which seems a good plan - all I need is an infection anywhere. And a good thing is I am helping to keep the Elastoplast company solvent.

Another being that my skin is SO dry - amazing. So I am also helping Nivea out [it’s the greasiest cream I can find that doesn’t cost an arm and a leg]. Maybe I should go into advertising? "YES!! Nivea is very good for chemo skin! And Elastoplast is fabulous with your Jimmy Choo shoes and Prada bag - such coordinating colours!!"...heh heh

I now have NO eyebrows, and about 2 eyelashes. I am hoping they start to grow next week [having a big mental about this - as in; thinking of them growing and they might grow faster?]. Booked myself in at Force for an Indian Head massage too - I reckon the old hair needs a bit of help, and that should be good - get the circulation going in my scalp anyway. Never had one, so it’ll be an experience! Unfortunately you can’t make an appointment, so I will have to try and sort Andrew a slot while I am there - working 6 days a week makes it very awkward for him to do anything and I think it’d be really good for his little head. Next one is reflexology! Although I can’t imagine anyone wanting to touch my horrid feet.

I am starting to feel much better all round - still odd pains etc but maybe I would have had them anyway? Next week I am seeing the Personal Trainer [ee - ogre?] OMG!! I will have to MOVE! Eek! Exercise...NOT my favourite thing, but needs must, as I have no stamina, one stone extra on my butt and anyway, it will help to be sure the cancer doesn’t return. Exercise and ginger tea! Here we go here we go....

The tiredness hasn’t stopped, but I think because I am feeling generally better in myself, it’s easier to 'manage'. Probably doesn’t help that I never sleep more than 2 hours straight at night. I think that’d make anyone tired. Waiting to see how the hot flashes go over the next 3 months, then if I am still having this 'awake all night' thing, I shall ask Dr Hong about some kind of DRUG [yeah! drugs...fab] to help it. I am hoping that once the chemo is out of my system things may chill out a bit [oo - bad pun. sorry!]. Plus it may help if I can get a bit fitter. I shall let you know about that.