I have not done this for over a year – my writings is dreadful, my speech is also rubbish. BUT both are better than they were.
Even my hair is getting longer. So, this is a start – onward and upwards! What this space…
This is an account or diary [sort of] by an ordinary woman, in an ordinary life, who suddenly found herself with ovarian cancer. How extraordinary! And rather startling to say the least. When I looked for information for myself, I couldn't find anything 'personal' by other ordinary women like me. Lots of info, but mainly medical facts and scary statistics. Then I discovered blogs. This might cheer up or help other people like me to see there can be a light at the end of the tunnel.
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!
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.
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".
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 …
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.
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.
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.
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? ;)
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.