World Ovarian Cancer Day: 8th May 2013

May 8th marks the first World Ovarian Cancer Day where organisations from around the world will unite to educate their communities about ovarian cancer and its symptoms.

Ovacome along with other patient organisations from around the world came together at the initial meetings to discuss the common issues surrounding ovarian cancer and are please to be a part of the first global ovarian cancer awareness event which we hope will build a sense of solidarity in the fight against ovarian cancer.

How can you get involved?

Join Ovacome for a tour of London on Tuesday to help spread awareness of the first World Ovarian Cancer Day. They will be taking pictures and handing out ribbons at various popular and iconic sites around London.

They will be meeting at 10.30am on Tuesday at the Ovacome offices and plan to head to London Bridge, Westminster, Green Park and finish at the Transport Museum, Covent Garden.

If you are free for a couple of hours then join them when you can and Ovacome will also provide Ovacome t-shirts for volunteers to wear and materials to hand out.

If you are unable to join Ovacome in London and still want to help support World Ovarian Cancer Day then you can still hand out leaflets, put up posters and send in pictures of activities taking place where you are!

Going Viral:

As this is global campaign we want to share our participation with the other global organisations involved so please help us to spread the word by using social media sites to inform others of how you are supporting the first World Ovarian Cancer Day. You can send you pictures or post them to Ovacome’s Facebook and Twitter pages so they can share them with their wider community.

on Facebook!

Use #WOCD #WorldOvarianCancerDay on Twitter to join the conversation.

http://www.ovacome.org.uk/

October

"Look at this shit" – and I quote from here because I totally love this post.

October is breast cancer awareness month. PLEASE try to avoid the 'pink' crap, and instead promote actual/real awareness by telling your friends how to check their breasts [men as well] and how to give practical support to women & men who have / had breast cancer.

Researching this is easy. Get your ass on Google – first lesson: do NOT tell cancer patients to 'be positive' – just a warning, so you don't end up with a hot waffle iron to the face ;)  They WILL be positive…in their own time. But it takes time. And it isn't helped by [well-meaning] people TELLING them they SHOULD be positive. Quite often, you just can't. Losing your hair, going through painful treatment,  gaining weight through steroid treatment and knowing you may die are quite off putting when it comes to the 'being positive' stuff.

Breast cancer is NOT about 'pink' trowels. It's not about pink shirts/shoes/hats/dollies/M&M's or Kentucky Fried Chicken!

It's about pain, loss and devastation [none of which are particularly pink!]

DO help by being proactive and spreading a sensible message. A colour or an obscure Facebook message about where you keep your bloody handbag / hat / heart / whatever the fuck, does NOT define, explain or help people to be aware of the symptoms of this disease. And the saddest thing is that even by being aware, it doesn't help – breast cancer can strike even the healthiest people – it just does. Sort of like any cancer really. BUT by checking, you may be diagnosed early, which can help your survival rate enormously.

Please promote awareness of the symptoms of breast cancer by telling women and men HOW to check for it. Simple yes? You'd think so. There is an awareness pack here. It has a lot of 'pink' stuff all over it – ignore that nonsense and READ the information.

There is an excellent blog post here, all about why 'pink' is so totally ridiculous [do read it – very interesting] I particularly liked the bit where he says:

Being aware of the hazards of shoving a spindle up your ass and lighting your clothes on fire while smacking people in the face with a hot waffle iron and singing “Kumbaya” in a falsetto voice… well, you get the idea. Prevention is the key reason for awareness.

Oh, and if you read the post AND the comments; it's apparent that 'pink' is totally sickening to the majority. Pink? No. Remove it from my sight please. Information? Yes – bring it on…

I am very afraid of breast cancer. It is closely linked to ovarian. Happily, I had a physical check up recently and I am fine. Just waiting for the scan results now…waiting. It's really not good for the 'positivity' factor. So; no-one best be telling me to be positive – 'ware that waffle iron!

thank heavens for the NHS

Recently I have been useless at blogging. Confidence in what I am saying and why = zero. This seems to be a common thread across my life right now. And I am determined to resolve it. Joining the jolly old BNI being one way of regaining some confidence. At least in the work area. And to be honest, BNI is really helping. I didn't think it would – but seems I am wrong about quite a few things lately!

Strange that it took very little to make me think this blog was worthless and that I shouldn't bother. Even stranger; initially I wrote the blog, not for me, [oops – that's a lie – I did write it for me. Self therapy – and oh yes, it works!] but more so for women like me who were looking for something on the internet that didn't tell them they should immediately  'Get God' [no insult implied – merely a term intended for the rather deranged out there who think if you Get God instantly, you will be cured. Er – no.] or that they were immediately, if not sooner, going to DIE. I forgot my place. I forgot that it doesn't matter WHAT people think of me, actually.

IF THIS BLOG SAVES ONE WOMAN'S LIFE I shall be reprieved [oh and doesn't THAT sound trite? But it's true]. If it helps ONE woman deal with her diagnosis in a more informed manner, I shall be grateful.

Well, I have now recalled my place in the scheme of things. This blog is for me, as a therapeutic exercise, and for all the women who have been diagnosed with ovarian cancer and are frightened. It is so frightening.

I am still frightened. I am waiting for a CT scan – frightening.

It's here simply so that those women can read it and sigh with relief. IF they want to.  No, you do NOT have to become a Born Again Christian [although, if that helps, why not?]. No, you do not have to read this blog. No, you do not have to take the stats into account. Why bother?

And no, you are not necessarily going to be dead in 4 years [hello statistic people – we say STICK it, you Doomsayers!] and no, losing your hair isn't the end of the world, even though it really DOES feel like it is when it happens.

The last few weeks have made me think again. Four women, and two women's sons [imagine that!] have been in touch. Through this blog. Saying that the blog has helped them [all new diagnoses – IS that the plural of diagnosis?] and that it has been useful. So. Yay. Maybe I will be a little more proactive blog-wise again. We will see.

The main reason I am posting this evening is because I have NEVER been more grateful for the NHS than when someone shows me a blog like this; Jen Thompson's blog. She has ovarian cancer. Have a read – the photos are fab! Maybe give a donation to help her survive. Can you imagine that? Having to ask people to donate money or meals so that you can live? Is this civilised? No. No it's not.

This is Jen. Voted Woman of the Year by the Source Weekly, an edgy weekly magazine in her area. 'Highlighting some important issues and bringing the ovarian ick, to the surface.' Ick? Yeah.

I really do thank God for the NHS. I would probably become one of those crazy people that plan assassinations if there were ever a time we would lose it. I didn't have a single worry about my treatment. It was all on the NHS. Yes, I have paid my stamp – but it was never a lot. And what I paid has been reciprocated tenfold. If not more. I have had chemo, surgery, anaesthesia – scans. All paid for. I didn't have to ask people for help fund me to survive. I didn't have to ask people to feed me. My only worries were my immediate self [and when you get cancer – boy oh boy, that is all you think about!!]

So please, if you can, donate either a meal, or a little money to this young woman. She so desperately needs help. If we don't help, the System she lives under will simply allow her to die. And that's what is so horrific – the inhumane 'allowing'. There are treatments that could save her. IF she had the money. So let's help her get the bloody money!! And bloody it is.

Confucius says - “By three methods we may learn wisdom: First, by reflection, which is noblest; Second, by imitation, which is easiest; and third by experience, which is the bitterest."

So much has been experienced by me; and hardly any of it has anything to do with cancer. But the cancer. Bitter? Isn't it? No. Bitterness eats us. But it IS infuriating. And Sad. So we have sadness…guilt. And rage.

And we have happiness, peace and love. Personally I prefer the latter :)

So now just to await the scan. And it's results.

more cats

now that they've been here two days, life is settling into a sort of rhythm again. New kittens [these are 11 weeks] are at first scared, then curious, then usually have an upset tummy from the move and different food etc. Ugh. I decided to try boiled chicken on my two - FAIL! Last night, after gobbling it down as if their lives depended on finishing it within 3 seconds, we had Throwing Up All Over The Place evening…poor little things.

So, no more chicken for a while! Both are recovered this morning - racing around like crazy things. They have taken to sleeping on my desk - draped around the Wacom pad. Nice company :)

In the meantime, my tummy is now back to normal [phew] - yesterday I only had to clean one chalet, which is no big deal. Less strain on the old belly muscles and less exhausting in general. Today - major gardening and on Friday [this is hilarious] I will be painting. As in 'Painting and Decorating'…good grief.

Which means I'm a lot less grumpy. Nothing like a bloated, painful stomach to send one into the doldrums. Ridiculous, but true. Pulled muscles? More likely heh heh

Now to try figure out if these kittens are boys or girls…no names until I do!

insomnia

INSOMNIA WALLPAPER

fogo - last night was frightful! the absolute WORST night's sleep [or, rather, NON sleep] that I've had since chemo. I woke up literally every 30 to 40 minutes. Can't say there wasn't variety mind you - it was one of the following: hot flash. freezing cold sweat. coughing my guts up or drowning in snot. jumping legs. dying of thirst. you name it - it woke me. and in the interim - mad and vivid dreams so that when I DID wake up, I was in The Land of Confusion….bah.

At 4.15 this morning, I gave up. After doing the 'Whirling Dervish' impression in my duvet, I had had enough and got up and sneaked downstairs. Had a ciggie in the kitchen [warm feet as we have underfloor heating - cold head as I had the back door open...perfect!] then scoped out Facebook. Imagine…totally miserable through lack of sleep…all bleary eyed [I'm sure!]. Arrive at my Facebook wall to find a kind chap [Phil Daysh ] had given the final £35 that allows me to qualify for the Woman v Cancer cycle!!  Whoa!! Thanks that man!!

The fellow doesn't even know me! I asked him a few weeks ago to lend me some trestle tables for the car boot, after being introduced by my friend Claire Hooper. He agreed, then I didn't need them. Now he does this. Amazing how generous people are and have been.

THANK YOU TO EVERYONE WHO HAS DONATED SO FAR!!

You are the best. All of you.

The last week or so have been brilliant as far as funds go, as my brother Pete started a run on my Justgiving page; he is doing a 10k run on the 3rd October and all the donations go to me. His friends have been fab! Bring on the West Ham peeps. So he has been a great help to get me to the total. Thanks Pete's Friends - and especially Pete! :)

In the meantime, I caught the 'Airplane Germs' Cold. Grr. Snot for Africa. And today, just when I needed to sleep for 10 hours, I had to chalet bash for 6. Oh well - surely last nights spinning class plus today's bed making extravaganza [14 beds plus 4 x 2 bed houses?]will help sweat out the germs?? Hope so! As it is I am sniffing, coughing and generally being grotesque. Hmm - do I care? Well, no, not a jot. Actually. It'll go. I shall survive. Oh, and that would be without having 'time off work'.

As it is, I am trying to get as TIRED as possible before going to bed this evening.  Lets see if it helps. Would rather like a nights sleep!!

don't forget…

the symptoms are here - read and remember…it could save your life.

beware of your ovaries!

Not that I have that problem any more - had the beastly things removed. I just have the aftershocks to deal  with. Not too bad! But in the US it is Ovarian Cancer Awareness month, and here's why you need to be aware:

Ovarian cancer is the second most common gynaecological cancer in the UK and affects over 6,800 women a year.

Cervical screening tests [smear tests] - DO NOT detect ovarian cancer, only cervical cancer.

Awareness of ovarian cancer is very low. Only 16% of women surveyed in 2007 were aware of ovarian cancer. Two-thirds were not able to cite any symptoms of ovarian cancer or said they did not know or were not able to mention any risks associated with ovarian cancer.

See below for the signs of ovarian cancer - or here for more detailed information

Bear in mind that it is the frequency, persistency, severity and new onset of these symptoms that may help to differentiate between those who are experiencing symptoms related to ovarian cancer and those who are not. Listen to your body, and ASK your GP if you are at all concerned.

And spread the word girls. If ovarian cancer is diagnosed at an early stage, the outcome is good!

Tracey's in the paper!

Here's my friend Tracey in the paper in Hull. Way to go Trace! And the photos are smashing :o)

charity auctions for ovarian cancer

See Chloe's post here: I have stolen some of it, as I like it. :o)

Her new LBC charity of the year is Ovacome; Chloe's mother died of Ovarian cancer in 2003 after being diagnosed in 2002 with ovarian cancer stage 4. After 2 years of going to the doctor with unrecognised symptoms.

If you don't know the symptoms of Ovarian Cancer it is easy to mistake them for IBS or pregnancy or just  ignore then entirely as you are too busy to nip to the GP.

Ovarian Cancer is the fourth most common cancer in women, making it quite rare, and it doesn't get enough press. If you ask the majority of people what the symptoms of ovarian cancer are, they probably wouldn't know. I certainly didn't until I was diagnosed myself.

Ovacome have come up with the following acronym to help recognise the symptoms:

The BEAT Campaign

B is for BLOATING – persistent bloating, it doesn't come and go
E is for EATING - difficulty eating, and feeling full more quickly
A is for ABDOMINAL - abdominal and pelvic pain felt most days
T is for TALK - to your doctor. As soon as you can!

I didn't have any pain at all, but definitely bloated, got full up very quickly, and got VERY VERY tired [not all the time, but in sudden attacks of sheer exhaustion]. And I was 'too busy' to go to the GP.

Chloe has pledged to do at least 2 charity auctions on eBay (where 100% of the money goes directly to the charity), another charity raffle in march (Ovarian cancer awareness month) and also give a % of the profits from her card sales. She really wants to get to £50.00, so buy your cards from her here! Maybe she can get to £500!

Ovarian Cancer Takes to The Stage – quoted from the Whisper Network

Your Blues Ain’t Like Mine

"While it’s been reported five to 25% of cancer patients experience depressive symptoms at some point during their illness, research suggests the prevalence of clinically significant depression is at least 20% for ovarian cancer patients. In fact both depressive and anxiety symptoms appear to occur more frequently in ovarian cancer patients than in patients with other forms of cancer.

There are myriad possible reasons for this. But before I get to them I want to say this post is by no means meant to depress you or make you anxious. Quite the opposite, having spent many years researching depression and anxiety I’ve found over and again those suffering these ailments are much relieved to learn there could be a physiological component to their experience, at the very least much comfort has been afforded by learning they are not alone.

Certainly there are obvious psychodynamic reasons why women with ovarian cancer might experience more psychological distress: frequently the diagnosis comes late in the game when prognoses are not great; just as often there have been months – or more – of symptoms which have gone misdiagnosed and the resultant rage and betrayal that evokes can leave one feeling helpless and depressed; once diagnosed many women are shocked to find medical professionals still scratching their heads regarding adequate forms of detection and effective treatment of ovarian cancer; as mentioned in a previous post, all of the above has resulted in a public reaction of horror and discouragement upon hearing someone has been diagnosed with the disease (i.e., having your friends and loved ones gasp or tear up rather than take your hand and tell you success story after success story doesn’t help to boost one’s mood); and of course when a diagnosis of ovarian cancer comes before a woman has had all of the children she dreams of having there is that additional loss to bear.

But I have a theory there is something else at play. Other research suggests gynaecological cancers overall result in higher rates of depression, anxiety and adjustment disorders than do other forms of cancer. What do all gynaecological cancers have in common? A hysterectomy. It seems quite possible that the hormonal impact of losing one’s ovaries (and therefore oestrogen) could quite reasonably trigger depressive and anxiety symptoms (to say nothing of the pre- and peri-menopausal women for whom a hysterectomy leaves them unable to bear children as well as in sudden medical menopause). And of course for those women who experienced depressive or anxiety disorders prior to their diagnosis, battling cancer can very likely trigger further symptoms or a worsening of pre-existing ones.

These are guesses on my part as there has not been sufficient research done to investigate the psychological impact of cancer on women, never mind why ovarian cancer patients in particular struggle with increased rates of depression and anxiety. The good news is standard antidepressant treatment is effective in treating these symptoms, and certainly talk therapy, and support groups can be enormously helpful.
It seems important to acknowledge this trend not to scare women but to affirm their experience and bring into the open this possible dimension of the ovarian cancer journey. Just beginning the discussion will bring many women peace of mind."

bloody hell! therapy? er – I don't think so…I am so lucky to have all my 'girls' world wide to talk to – perhaps that is therapy in itself? Fellow bloggers, women on Ovacome, women on Facebook. I would run a mile at the thought of lying on a couch and talking to a person who has NO IDEA of what we are going through. And I certainly wouldn't pay for the privilege!

I really MUST fill my scrip for 'happy pills'..before I become depressed!

Ovarian Cancer: Do You Know the Facts?

There is no time like the present to learn all there is to know about ovarian cancer symptoms and prevention. Be sure to share it with a friend!

1. Ovarian cancer symptoms include:

Abdominal bloating, pelvic and/or abdominal pain, and/or feeling of fullness [for more than one day - ignore the yoghurt advert!!!] are all symptoms of ovarian cancer in addition to vague but persistent and unexplained gastrointestinal complaints such as gas, nausea, and indigestion; unexplained change in bowel habits (constipation or diarrhoea); unexplained weight gain or loss; frequency and/or urgency of urination; unusual fatigue; shortness of breath; and new and unexplained abnormal postmenopausal vaginal bleeding.

2. Risk factors for ovarian cancer include:
A. Inherited gene mutations
B. Under the age of 40 with a personal or family history of breast cancer

All of these factors make you at higher risk than the average woman. Several factors may increase your risk of ovarian cancer. Having one or more of these risk factors doesn't mean that you're sure to develop ovarian cancer, but your risk may be higher than that of the average woman.

3. Both breast and ovarian cancer can be caused by gene mutations.
Both breast and ovarian cancer can be caused by mutations in the BRCA1 and BRCA2 genes. Women with a family history of breast and ovarian cancer, or a personal history for either, particularly if diagnosed before age 50, should be aware of increased risk for the other.

4. A prophylactic oopherectomy is:
Prophylactic oopherectomy, or risk reducing salpingo-oopherectomy, is the removal of both ovaries and tubes for prevention of ovarian/tubal cancer in extremely high-risk patients.

5. How is ovarian cancer usually treated?
A. Cytoreductive surgery and surgical staging (removal of ovarian tumours)
B. Chemotherapy
C. Radiation therapy when appropriate

All of the listed options are used to treat ovarian cancer. Treatment for recurrent ovarian cancer must be determined by a gynaecologic oncologist.

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.

symptoms - very important girls!

I 'borrowed' this from the Daily Mail website.
Click on the image for a larger view.

























WHEN will someone decide it's worth screening us for this? Or even make us aware that for a pitiful £100 or thereabouts, you can have the CA 125 test done yourself? Perhaps once they work out that it's more 'cost effective' in the long term for women NOT to have major surgery and chemotherapy etc.? Hmm - note to self - what was I thinking when I ignored my own body and thought everything might go away? Oh - that’s right! I wasn’t thinking at all!

If you notice any of the symptoms speed off to the GP and demand action.

step 16: before the surgery

This is what my stomach looked like just before the surgery. For me personally, this was grotesque, as I usually have a board flat belly. It looked as if I were pregnant, and was very hard and uncomfortable. Cutting my toenails was a nightmare.

If I had been carrying a lot more weight I probably wouldn’t have noticed the lump, and the surgery would have been done a lot later. This would have meant that the mass would have had time to spread further into my abdomen and cause more damage than it did.

step 02: see the GP

Monday 21st January:
Arrived back from Portugal, raced off to the appointment with the GP – my usual GP wasn’t there, so I saw a very helpful woman instead – she booked me in for an ultra sound scan at the Women’s Health Centre, RD&E in Exeter, in a week and a half’s time. At this point the lump in my groin was still about 5cm. No cause for alarm!! No other side effects, apart from a bloated tummy and some extreme tiredness before I had a period. My periods got longer, about 8 days, with only about 2 weeks in between – but I thought nothing of this as they have always been heavy and erratic and very irritating. Again, I blamed all the travelling.

Thinking back [isn’t hind sight fantastically clear? grr], I had been complaining about having a bloated tummy from about October onward, but with all the travelling it seemed a side effect of that. One other thing, I had been putting on weight, whether it was to do with this or not I am not sure, but I was starting to feel rather like a Puffer fish! A tired and lumpy Puffer fish to boot. So, now to wait for the ultra sound.

step 01: how it started...

2007 - 2008.
Some time in December 2007:
I was working away from home in Portugal and I felt pretty bloated all the time. Usually I have a really flat belly [it’s just luck! I don’t actually do any exercise or anything frightful like that]. I ignored it [as you do] thinking it would go away.

Then we went to the Gambia for 2 weeks over Christmas, and I started to feel really bloated, plus I found a 5cm lump in the lower right side of my groin. You notice this a LOT in your bikini! But I still thought it was just a glitch from travelling - odd water, odd food.

But then January 2008, while I was again working in Portugal, the lump started to bother me, as it hadn't gone away, and I was feeling very tired at strange times. So I called home to arrange a doctors appointment asap when I got back, as it seemed a bit odd. Plus I was exhausted a lot, so I thought it would be a good idea to see the GP anyway.

I thought the lump might be from having that projectile vomiting bug at Christmas...that was fun... [plus we were in the Gambia, so could have been anything!] – maybe a hernia? Hmm. Anyway, wasn’t that bothered at the time, as I’d been travelling on and off almost non-stop for about 6 weeks, and you sort of expect to have a bit of an iffy tummy.