Friday, 2 May 2014

check up or death sentence

keep-calm-and-fingers-crossed-11 Astoundingly, my last blog post was over 4 months ago - slack! How time flies when you're self employed.

In February 2008, I was diagnosed with ovarian cancer. SIX years  and three months ago. Then, I thought that I had 0 to 5 years to live at the outside. But here I am - over SIX years out of dx…and really starting to believe it. 'It' being - I 'might' survive. Tentatively.

I have been in stasis; 'suspension of the passage of time'…and it's odd. It's almost as if everything floats away - the only thing one can think of is one's Death Sentence and getting though the day…why bother to do any of those long term things? The little rat in the brain tells one 'ah you'll just die anyway, so why bother?' So you don't.

Well, the result is that now, due to my five years of inertia, we have a LOT of stuff to do - paint the house, inside and out; redo my office, as the cats have destroyed everything in there [little beasts]; we've recently dug up the entire garden and replanted totally everything. And so on. Lots of 'normal' things…the things that everyone complains about - but that [suddenly] I can't wait to get to grips with!

Sadly, I lost a lot of friends while I was wallowing in my own 'I'm going to die' sitcom. And each one of them, whilst being heart breaking, was also terrifying … me, but not me. Each time. I loved those gutsy girls so much, and now they're gone. But each of them lives on in my heart driving me to continuously raise funds, raise awareness - just the very little I can do to try to assuage my Survivors Guilt, and to hopefully save just one woman's life by getting the symptoms out there.

This week has been a tad fraught - the FH suddenly had a brainwave that SURELY it was time for my check-up? Hmm - I'd shelved it and was a bit startled to note that it was due in June. With the new appointment system at the RD&E, you no longer get your appointment as you leave your check-up - you wait for it to arrive in the post. Which means you could get notice 2 days in advance - which means you wouldn't have time to get bloods drawn etc. Which is STRESSFUL!

Recently, I have been having 'symptoms' [read: 'hysteria']. When I was diagnosed, one of the most extreme symptoms I had was exhaustion. Not tiredness; exhaustion. I'd be working, and suddenly HAVE to put my head on the desk, as I simply couldn't hold it up any more. And I have this now. And for the last two weeks.

Renninson [my surgeon and life saver] told me that IF I were to have a recurrence, the symptoms would be the same as they were initially. [couldn't work that one out at all - how is that possible, with no ovaries?]. And the last few weeks this remark has been bouncing around my skull like a death knell. In addition, I have had shocking pain in my gut - enough to double me over and stop me in my tracks. Always in the place where I had the laparoscopy, or where the initial tumour was. So more than likely adhesions right? And pain in my bones - my back, my wrists, my knees [they make a very alarming crunching sound on the way downstairs] - even my feet.

So I called my cancer nurse, the lovely Gail, and asked about my next appointment. We had a chat about what I've just mentioned and she said she'd try to find out when my appointment was. Viola! She rang back and said I could go THIS Friday! Shriek! Panic stations regarding the bloods and no time. But, all sorted by Gail - I was booked into the phlebotomists at the RD&E, and just had to turn up for the Vampire Attack. Which I did yesterday.

So tomorrow, I have The Check Up. I truly believe that only people who have had cancer or some other hideous disease that can recur can understand how scary this is. It's insane, as nothing has changed since I didn't know I had a check up, but actually everything has now that I DO know I have one! Handily, I only have tonight to be petrified! I suppose it's down to the fact that there is a 50/50 chance of a recurrence. Not bad odds, but I'd prefer better. One amazing thing is that Gail the Wonder Nurse called me today to say my CA 125 is still at 7!! That is fantastic. Really. It was 1149 when I was dx. So I do feel more confident now - but it's the symptoms that the surgeons read, not the CA 125 results.

Fingers crossed for tomorrow please! And DO know the symptoms …

Friday, 20 December 2013

Happy Christmas? Oh yes…

christmas-menu I really don't like Christmas. It sort of sucks. Everyone being all 'happy' for no good reason. I lost both my lovely Dad and my sweet father-in-law round Christmas. I was diagnosed with cancer just after Christmas. I had a massive scan-scare last Christmas. So - actually Christmas for me? It's crap. I get sideswiped by sadness.

I will be sitting around doing something, then BOOM I am almost in tears. Or totally in tears. Just memories; thoughts of things shared in the past…just missing people. Missing the missing people.

Mostly my Dad - he liked a Real Ale at Christmas. He liked Stilton like I do, and the dark meat on the turkey like I do - and dark rum & raisin chocolate. And so on…tut, I am so like my father, so I am constantly reminded of him. Which is mostly a happy thing, but some days - a very sad thing.

dad

But this year has been interesting and amazing. I did the 400km cycle across Cuba [brilliant - but torturous!] - I have now raised over K12.5 for research - I am very proud of this! Plus I have a cupboard full of cycle medals - of which I am also proud.  I never EVER thought I would get a medal for anything!

And - we have a new little grand son…I honestly didn't think I'd live to see this Christmas. To actually be here to meet Joseph? It's incredible. Here he is with the very first Christmas gift of his life…and it made me cry to actually buy it - because I was so happy to still be here to do this.

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This year has been a catharsis for me. And this post is to say thank you. Thank you to everyone who has helped me get to this point. A point where I can actually now start to plan for the future [fingers crossed]. I know - it sounds insane. But until now I have been thinking 'wtf - I'll probably die before I finish [insert anything here]' - but it seems my mind has caught up with my healing body. Now I have plans!!

The garden needs an overhaul. The house does too - everything became frozen in time when I was diagnosed with cancer. Not so any more. It has taken over 5 years, but I am finally getting with the program. But even so, I still touch wood for every little thing. Expecting something to go wrong.

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So ~ thank you to everyone who has helped me. Thank you for the little things; my Mum donating to Kate instead of me, when we didn't think Kate would make the minimum amount for Cuba. Medhat, for donating his restaurant for an event that raised over £1000 even though it was FREEZING cold. Peachy Farmer for playing at that same event - they were absolutely amazing! Claremont Marquees for giving me a marquee…Liz for hosting a brunch that raised a fortune; Lindsey for raffling one of her paintings...on and on...I could fill the entire internet with a list of people who have been so kind. But I won't. You all know who you are. And you all know how grateful I am. And you all know you have my heart in your hands.

KBO then. As they say! Until the Ride the Night eh? ;)


Anns Armyt RTN 2014

Thursday, 19 December 2013

Cuba. And things

DSC_0155 This is a long overdue post! The Cuba cycle was amazing - hard, but still, it should be hard. People sponsor us in the expectation that we will do something in return. That is what we promise. To cycle 400km in a foreign country so that they will sponsor us. And really - we did! We cycled each day in 40 degree heat and 90% humidity. Everyone was completely out of their comfort zone. You could NOT train for this in the UK.

But I am proud to say that I cycled every single sweaty kilometre! Much to my amazement. I really didn't think I'd trained enough. But patently I had, as I didn't end up in the bus, apart from at the stops, where I was leaping in with gay abandon to get my hot and sweaty self under the air conditioning vent!

We had to drink non stop and we had our heads soaked every afternoon to counteract the effect of the terribly draining humidity. For some reason I was lucky and it didn't affect me all that much - and I had crisps! SALT!! Very important. They do not have crisps in Cuba for some reason.

Cuba itself is stunning. Greener than the UK, and the people much more friendly.  The landscape is beautiful - Cuba is the island of landscapes; rolling hills, mountains, valleys and beautiful bays. And we cycled through them. Cursing the flats, not the hills. We were so glad of hills, as they gave us down hills - and a bit of a breeze.

The same day that I finished the cycle, I called the FH. He was so pleased for me - but at the same time he had to tell me that he was flying home from Grenada, where he was supposed to be having a relaxing break, to be with his father. Harold was in hospital and very, very ill. That day, I was out in a purple car with Helen. And I was so grateful that I was with her. We simply carried on. Helen understands loss. Even then, I knew we would lose him. It was heartbreaking.

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Monday, 11 November 2013

Jeremy 'H'unt

einstein So. I am never up to date with the news, as I never watch TV. I hate TV. Every time I DO watch it's either something that makes me feel like slightly killing myself or killing at least 12 other people. So I don't watch it. And the radio is just as bad - so my 'News' is garnered either by posts on Facebook or [if I feel really interested] by a Google search [of posts on Facebook] of what's happening today.

Subsequently, I was not 100% aware of the Saatchi Bill Fiasco. Until I had an email from Ovarian Cancer Action. I am one of their Voices, so possibly I SHOULD  be aware of this kind of thing. Well. I am now! And now I am Fuming!!

Why? Because some foolish man - Jeremy Hunt to be precise [Hunt?? Really? ok…], has stated that 'cancer already has a cure'. So we don't need the Saatchi Bill. Well, well! I totally missed the news headlines about that little miracle! Stupid man!! IF cancer has been cured, then how is it that there are still so many of my friends that are dying?? DO let me know Jeremy won't you?

It's astounding that a modern man can be so completely and  moronically out of touch. The treatment for ovarian cancer has not changed in the last 45 years. Oh, and DO correct me if I'm wrong! Thank God that we didn't have a 'Hunt' when Faber was trying to create a cure for cancer - imagine that! Hunt would have crushed chemotherapy and - oh joy! I and thousands of other cancer patients would now be dead thanks to his lack of foresight. Innovation is the only way forward you foolish man.

Do you think, Jeremy, that the women that Farber tested chemotherapy on in the 40's were like you? No. Of course they weren't. They were women who knew that if they didn't try something new - they would simply die. And dying is not an option for cancer patients - in OUR minds, survival is the only option. You make us sick [well - sicker]. And patently, you wish to REALLY make us sick, as in making us die - due to lack of CHOICE. We have to have a choice here - the facts being that IF there is a doctor who has a reasonable treatment, tested and tried in the lab - it should be OUR choice, as cancer patients, to allow that doctor to test his new and innovative treatment on us. NOT YOURS. IF we are at a point in our treatment that none of the traditional [as in chemo] tried and tested treatments will help, WHY is it that we should not be allowed to give permission to a doctor to trial his innovative treatment on us? WHY is it it YOUR decision?

Who do you think you ARE to decide for women whether or not we can live? Who do you think you are to decide that someone who has studied our disease should not be allowed to try to help us?

Why is it that you think you know what is best for women with Ovarian cancer? You have never had it. And never will. Do you think that if perhaps your wife or daughter had ovarian cancer [God forbid such a thing], and were at their very last choice, that you would not wish to have the help of an INNOVATIVE doctor - whom could perhaps save her life?

I truly believe that in that situation, you would definitely change your [at the moment] ridiculous and thoughtless point of view. IF there is already a 'cure for cancer' then DO share. I would love to tell the friends I have that are fighting this disease. I am sure it would make their bloody day to know.

"It has been reported that Jeremy Hunt at the Department of Health announced last week that it would object to the bill as there was "already a cure for cancer".

Lord Saatchi’s Medical Innovation Bill is simply helping doctors innovate new treatments and cures for cancer and other diseases. Why has it been refused? HOW can you object? How could anyone object?

Please. Share this information. Get people to see this. We deserve better than Hunt and his inane refusal. IF I were to have a recurrence, I would desperately want the choice of innovative treatment - the existing treatments we have are limited, and one's body can become immune to them. And the cancer cells can too.

Do NOT let Jeremy Hunt limit your choices. And by doing so, limit your life. Share.

saaatchi

Tuesday, 24 September 2013

tickled pink? not really…

Below the picture is a guest post by Joanne [pictured below], a breast cancer survivor who has something she'd like you to understand.
…just so you know…no-one is particularly 'tickled pink' if they've actually had breast cancer. I don't think I'd be very impressed with a 'Tickled Teal' campaign for ovarian cancer awareness either! Good grief - so, read on!

image October, traditionally known for Halloween, Autumn and harvest festivals, is now known as Breast Cancer Awareness month or 'Tickled Pink'.

I have no idea who came up with Tickled Pink but I seriously would like to bash their faces in. It's quite obvious, as with most things to raise awareness of breast cancer, e.g.: Facebook status to do with bra colour, handbags, gestation periods - that these people have never had to go through breast or any other cancers.

I don't get offended by many things but this offends me.

The strange thing is, because you have gone through it, your friends think you will automatically sign up to this shit and then they get all defensive when you set the record straight.

tickled_pink_NO

There was a time when I would go around buying Tickled Pink stuff thinking I was doing my bit for breast cancer awareness (and let's be honest it's everywhere in Asda throughout October) and not really give it much thought. Then BANG! 2 years ago I heard the words "it's breast cancer" well feck me, doesn't your perspective change then.

One mastectomy later, a 6 inch scar where there used to be a breast, surgeries, more scars and I can tell you it certainly isn't pink, it isn't fluffy and it damn well isn't funny.

Then I got to thinking about Tickled Pink, just how much of the profit of all the products sold actually goes to breast cancer awareness or cancer research? Not the whole lot I would hazard a guess, the supermarket will take a cut, will it be gift aided? Now the sheer volume of products sold means the donation will look huge, but not as huge as if everyone donated what they would pay for these products directly to BCC or cancer research - the amount would be phenomenal.

Please don't buy into the crap, it's a supermarkets way of getting you to buy products you normally wouldn't so they make more money out of the misery that breast cancer causes and all they do is wrap it up with a pink and fluffy name.

I'm a survivor. Don't turn October pink in my name, donate straight to breast cancer care or cancer research or sponsor an event. That's how to make the biggest difference. There are plenty cancer charities out there. Put your money where it will be most effective, and instead of changing your Facebook status to a bra colour (really offensive if someone has no breasts), change it to one that says "For breast cancer awareness month I have donated £XXX to BCC or cancer research".

Thank you,
~ Joanne

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