Thursday, 30 April 2009

Girly Night! in aid of Force

On the 30 April 2009 [that's today!] at the EXE SHED, Exeter

House of Fraser, Debenhams and Boots would like you to join them at their 'Girly Night' at Exe Shed in Princesshay, Exeter on Thursday 30th April.

Exe Shed is housed in a contemporary glass pavilion building and surrounded by an outside terrace ideal for dining or drinking. Inside on the ground floor is a large cocktail bar and dining area and on the first floor is a modern restaurant and separate glass covered terrace which has a view over the Cathedral.

There will be mini make-up sessions on offer along with Clarins Cocktails!! The fun starts at 7pm and will finish around 9pm. All those who come along will be given a leaflet which offers 'in-store' free samples.

There will also be a raffle with proceeds going to FORCE.

For more details please call Carole at House of Fraser on 01392 223000 extension 3041.

Wednesday, 29 April 2009

forgetting things...

Wednesday, 29 April 2009

You know what - I think cancer can make one quite thoughtless and selfish. One becomes so obsessed with the thought and means of survival, that one can become quite revoltingly self absorbed. I suppose it's a little like being attacked by a crocodile or a lion…you wouldn't really be thinking about how everyone else is would you? You'd simply be concentrating on how to get the beast away from your jugular. Or your foot. Or whatever part it was busy munching on. Maybe this is just me. But survival seems paramount. I forget most everything else. Not deliberately. It just is.

This lays one open for the 'Guilt Trip' as in, 'I feel bad about not doing this, that or the other' for other people. And it’s true - chemo really does make you forget to do things. I have ALL my family's birthdays in my Outlook calendar - I know exactly when things are going to happen. BUT I still don't manage to do anything on time. I know when things are going to happen - I know to buy a card. But I never know if I've sent the damn thing or not!! And sadly it's usually a 'not'! Grr. So our new plan is to buy all the cards in advance, address them, stamp them, write them. And then simply rely on AJ to post them in time. We discussed this the other night - AJ is a star. I was sort of having a bit of a fit due to constant FORGETTING. I hate it. Uff! I hate this!! I feel so stupid - I forget things that happened 4 hours ago! Bah. But thanks to my great husband, I now have a plan.

Hopefully, the chemo brain will go AWAY!! It’s the most frustrating thing.

things that really irritate me!

Wednesday 9 April 2009

Hmm - at the moment, after the mad frenzy of trying [and almost succeeding] to make everyone suicidal about the state of the economy, the press are now threatening Death and Destruction to all and sundry via the 'Swine Flu'. Oh they so wind me up! What's the problem with these people? Don't they have families, friends? Is it really necessary to constantly panic everyone? Obviously that would be a 'yes'. It would be rather refreshing if the press merely reported the facts - and how to deal with them.

So, now we are all worrying about this new and interesting flu. Some of us more than others. You know what I really HATE about having had cancer? It makes you nervous. In my previous life [that would be BC] I never worried about much. I assumed I'd die when I got to about 100, and probably in some kind of crash [as I am always driving or flying somewhere at a rate of knots] and I didn't stress about flu, colds etc. etc.

But of course this evening I discovered that the school, Paignton Community College [which is right near AJ's shop] has been closed due to one of the students having travelled to Mexico and caught the virus. Poor child. Apparently, the whole of the school year, 230 children, are being given anti-virals prophylactically. The next 'apparently' is this: there is reassurance that if you take Tamiflu anti-virals early, you make a full recovery. Oh good. For a person who's immune system is battered, this doesn’t really cut it.

So, I am tired of being scared of things that never scared me before now. I am sick of being upset by press reports that are patently dramatised. I am tired of worrying. But it’s so hard not to.

Although I must admit - my 'worrying' has lessened substantially over the last 2 months. Why? I haven't the faintest idea. I can now go for days on end without thinking about cancer. So that's a good thing.

But sometimes I get totally paranoid - I was out with friends last week, and sadly I had a paranoia attack in the middle of dinner. I had to rush outside, as I was in tears, just thinking how easy it can be to lose everything and everyone. Your life. Your friends. Everything that matters.
I am not sure if my friends understood that. And why should they?? And that's another worry. Of course you don't want to upset your friends. I certainly don't want to share my fears - at least not on such a vivid level. Doh! But my emotions are hard to control these days. Insane worries can become like nightmares - too real for comfort. Jumping into 'real' life and causing mayhem. And yet saying that, usually I am ok.

But when I’m not ok, it’s bad. Very.

Monday, 27 April 2009

love this...

The Exeter Night Walk

Monday, 27 April 2009

This was the Exeter Night Walk to raise funds for the Exeter Leukaemia Fund and Macmillan Cancer Support. I was supposed to be doing this night before I went to work in Portugal…but unfortunately one of those [to me] silly red-tape problems reared it's irritating head. We had to Fill in a Form, Send off a Cheque, blah de blah. In advance.

I only discovered this last minute, but thought we may be able to register at the door, and pay there. Er - that would be a 'No'. Bah. So I didn't get to go. BUT, my friends Judi and Julie did! Here's some pics of them that I scarfed from the Express & Echo.

The article about how successful the walk was is here. I am now planning to do it next year, waving my form before me! :o)

Judi Spiers who launched the event;

Judi [left] and Julie [right] - I haven't quite worked out what they're actually doing here, but being Julie, it's bound to be something rather energetic!

Saturday, 25 April 2009

"I feel my brain is not my own" - this article makes me feel a LOT better!

After chemotherapy, patients can experience huge cognitive problems. For many, it's the last straw. Lucy Atkins reports;

The Guardian, Tuesday 21 April 2009

Susan Sontag likened hers to the symptoms of a stroke, while Kylie Minogue complained that it made her forget everything. Welcome to chemobrain or, less catchily, "cancer treatment-related change in cognitive function" - a widespread problem for cancer patients which, until recently, has been largely ignored by clinicians.

For many, it's the last straw after months of treatment. You might struggle to find the right word for an object or be unable to follow a fast-paced conversation. Or you might have trouble multitasking. You might even forget your own phone number. More than just irritating, these occurrences can shake your confidence, damage your career, upset your social and family lives and, in extremis, even put you in danger.

Joanne Redford, 37, was diagnosed with breast cancer when her second child was 10 months old. Through 18 months of chemotherapy, she stayed positive. But now, one year on, she says, "I feel like my brain is not my own. Socially, her confidence is at rock bottom. "I'm nervous about striking up a conversation with anyone new these days. I think, 'What if I forget what I'm talking about?'"

Until now Redford has told nobody about these symptoms - not even her husband. "I just try to cover it up," she says. "People think that because the treatment has finished, you are fine. That you feel lucky to be alive. They don't realise what you are still going through."

Not everyone who undergoes cancer treatment experiences chemobrain, although no official figures exist on what proportion of people are affected, and research into the causes is in its infancy. However, one of the most recent studies on the subject, according to Ellen Clegg, Boston-based author of a new and controversial book, Chemobrain: How Cancer Therapies Can Affect Your Mind, suggests that the problem could be the result of chemotherapy temporarily damaging the brain's ability to grow new cells (the progenitor cells). "Some doctors are looking at whether chemotherapy agents influence the blood-brain barrier [whereby chemicals or bacteria in the bloodstream cannot pass into the neural tissue], or actually cross it, causing damage to brain cells," she says.
Clegg believes that doctors in America do not tell patients about these theories because they, understandably, do not want to put people off life-saving treatments. Consequently, she says, there is widespread distress and confusion. "Patients wonder what is going on, when their hair grows back and fatigue abates, but a spaced-out feeling lingers."

The issue is starting to be taken more seriously in the medical arena, with new studies springing up worldwide. According to Emma Pennery, clinical director at Breast Cancer Care, awareness of the problem is growing among oncologists. Clegg puts this down to patients who are refusing to be fobbed off. "When patients ask to be heard and doctors listen," she says, "it can be transformative."

"Some doctors are investigating whether the cancer itself is causing chemobrain effects," says Clegg. "Certain cancers may release metabolic products that could cause these symptoms, or the symptoms could be part of the body's immune response to the cancer." Elsewhere, researchers are investigating whether the symptoms in women could be related to lowered oestrogen levels caused by chemotherapy. "It is very difficult to untangle contributing factors," says Pennery. "There are so many different types of cancer treatment and these can all cause stress, depression and profound fatigue, all of which can affect your memory, concentration and ability to focus."

Pennery says that women who call the Breast Cancer Care helpline often complain that doctors dismiss these symptoms, "or put them down to stress, depression, fatigue or the menopause." When they hear that there may be concrete physical causes, and that the condition usually abates a year or two after the chemo finishes, their relief is palpable.

Chemobrain ... How to cope with the effects:
• Discuss symptoms with your clinician or specialist care team – don't try to hide them.
• Get help with other supposedly "manageable" chemotherapy side-effects that can have a knock-on effect, such as night sweats, which disturb sleep, which in turn can reduce cognitive function.
• Stay organised. Use calendars or planners and write everything down.
• Take frequent breaks: divide tasks up, and rest each time you complete a part.
• Exercise your brain: do crossword puzzles and number games, take up a new hobby, or learn a new skill.
• Exercise your body: moderate exercise can help with stress, fatigue and depression.
• Hang on in there: studies show that symptoms lessen a year after chemotherapy and decrease even more two years on.

Saturday, 18 April 2009

OC badges

Saturday, 18 April 2009

These are cute - for the first time in ages I've found some nice ovarian cancer buttons. There a zillions of breast cancer things all over the place, but not so many OC things. So I thought I'd add this for those of you who are hunting for them. Nice work Farrah!

Click the link below to see her site, and the buttons can be downloaded for free.


Friday, 17 April 2009

Last week part 01

Friday, 17 April 2009

AJ recently gave me the fright of my life. He casually showed me a couple of lumps that he’d noticed on his rib cage. Lumps?? What?! When he showed them to me, I felt physically sick. Hello hot flash and thoughts that don’t bear mentioning. And the worst thing was, I suddenly realised how HORRIBLE it has been for him, watching me go through all this cancer bullshit, and wondering if I would live or not, manage or not, cope or not - at the time I understood to a point, but as soon as there was something wrong with HIM, I really 'got it'. The worry. That sounds disgusting - as if what has happened to AJ is just affecting me…it’s not, but it certainly made me think. Cancer can make you quite thoughtless in some respects, and overly solicitous in others. It’s a stupid disease and blows your thought processes all to hell. Not to mention your memory! Well, that’s just shot.

Last year AJ had heart palpitations. They were from stress, and he had to have an ECG, as he kept waking up with a pounding heart, a dead or tingling arm and a feeling of panic. Poor thing – I know he hid a lot of his worry from me. Luckily he was fine once he knew what was going on, as he is also a strong person who takes control. But what our partners and family go through is sometimes harder than what WE go through. At least we make the choices and are in control [well, we think we are!]. I do sometimes wish I hadn’t had to tell anyone – but I do rather think they may have wondered about the bald head and bloated face! ;o)

For them, it must be agonising sometimes. Neither of us sleeps well any more, and I hate that I have caused that for him. Just typing this makes me cry. I would do anything for AJ not to have to worry so much. Just to have a normal wife who moans about normal everyday things…Grr. Bloody cancer has a lot to answer for I tell you what!! I wish I could grab it and beat the living daylights out of it!!!

Anyway, he went off for a sound scan and the doctors pronounced themselves 99% sure that they are 'fatty lumps' [charming! Lipoma actually] but he has a larger one deeper into his groin, which they couldn’t 'see' with the sound scan, so on Thursday he has to have an MRI scan to check it out. I am so stressed with this!!

But it was quite funny [in a black humour sort of way]. After the GP's appointment, AJ came home and told me he thought he had lymphoma. Lymphoma is an aggressive type of eyes almost fell out…until I realised he meant Lypoma…men!! What are they like??

The word 'lump' just makes me feel like screaming blue murder after last year. AND of course, I am working in Portugal next week, so he will be alone. After him being there for me for every single little test, scan etc, it makes me feel horrible not to be here. Although he doesn't seem that concerned, I know he is worried too, as he is a bit claustrophobic. When I had mine, they just did my head and that was bad enough - ugh - all that banging!! Bah. Work. Grr. I am VERY glad to have a job, but sometimes it would be nice to have a normal 9 - 5 one!! Freelancing sucks sometimes.

Thursday, 9 April 2009

the Cancer Vixen clip [trying again!]

Love this image of her kicking cancers butt...quite tickles my fancy heh heh

Hmm, every time I tried to change the text uploaded from YouTube, the video review disappeared!

So, the witty clip is HERE!!! Take that YouTube! Grumble grumble...

Cancer Vixen - want to read!

I have just ordered this book on the recommendation of a friend. Apparently it's pretty funny - it's always nice to read another cancer survivors positive experience, especially if it’s witty. The whole thing appears to be a comic strip - which is sometimes how my life feels! Surreal but colourful...

It's written by Marisa Acocella Marchetto [no wonder the chap had trouble pronouncing it right - I am sure I would too] and there's another witty clip here which I rather like too. Especially the bit about the Killer Shoes!

This is the YouTube review I found. I shall do my own after I read it - but with NO video ;o)

Wednesday, 8 April 2009

a brilliant idea - Yoga for cancer survivors - free!?

Yoga! Oh I'd love to do this - the problem is as usual, the cost of things like this - cancer seems to generate it's own expenses...quite a lot of them are nothing to do with medical expense. They are to do with trying to make yourself feel better.

It would be amazing if we could do this in the UK. I'd be there in an instant - it would be something that compliments the circuit training I already do, as it's a different use of the muscles, and also a good method for self control and calm. Panic being one of the less noticeable side effects of having had cancer, as it usually happens when you wake up at 3.30 in the morning! :o)

Just after I was diagnosed, a friend taught me some breathing methods by phone and email - another friend sent me some exercises to try [also via email!]. They helped me so much that I would imagine actually practicing yoga properly would be very good for both my mental and my physical health.

The friend who sent me the exercises is studying to be a yoga teacher in South Africa and she was worried about me trying too much untutored, but the little she could explain to me via email made a huge difference to my sanity. The friend who helped me with the breathing exercises finds yoga a godsend for the stresses of everyday life, and I still do that breathing now if I get stressed. I remember sitting on the floor with her [a tad the worse for wine] while she showed me how to sit while I breathed. Yoga always makes me think of them. And how kind they were to take the trouble they did.

Any yoga teachers out there fancy it? Please get in touch if you do!

"YOGABEAR is a community of friends - cancer survivors, yogis, health professionals, and volunteers across the nation in the United States. By partnering with local yoga studios, Yoga Bear matches cancer survivors with yoga classes in their community, free of charge. Their collective of studios are providing participants with comfortable surroundings and healthy activity beyond invasive treatments that may take place within the confines of a hospital.

Yoga Bear strives to provide the community with more information about yoga as a complementary treatment in cancer recovery. They do this through workshops, charity yoga classes, blogging and partnering with other wonderful non-profits.

Yoga Bear is a national 501(c)3 non-profit organization dedicated to providing cancer survivors with more opportunities for wellness and healing through the practice of yoga."

Yoga Bear

Online Cycling Raffle

Wednesday, 8 April 2009

BIG 'Bike Gear' Raffle to benefit HERA Foundation.

The mission of the HERA Women's Cancer Foundation is to stop the loss of mothers, daughters, sisters, grandmothers, aunts, wives, partners and girlfriends from ovarian cancer through empowering:
• Women to take control of their health
• Research Scientists to find new directions in early detection, treatment, and prevention
• Communities to provide support

Get your Big Bike Gear Raffle Tickets NOW!

Up for grabs is a chance to help HERA find a cure for ovarian cancer and a super cool custom 26'' mountain bike fork. Donated by Independent Fabrication, a custom bike frame builder, this and many other prizes are being raffled off to support HERA Women's Cancer Foundation. Win gear from companies like:
• White Industries
• Shebeest
• Timbuk2
• Shenandoah Mountain Touring
• Snappy Caps
• Tomicogs
• Mountain Khakis
• Gripped Films
• Independent Fabrication
• and many more

Winners will be selected on May 3 and raffle tickets are available online.
100% of raffle proceeds are donated the HERA Foundation.

Get your tickets on bikereg. Search: HERA or Escape from Granogue's Big Bike Gear Raffle benefiting HERA Women's Cancer Foundation. You do not need to be present to win.

Please help spread the word --- Tell your friends and post a blurb on your blog!

Tuesday, 7 April 2009

an invigorating day

Tuesday, 7 April 2009

What a great day - it was supposed to be pouring with rain. It didn’t - it was really sunny! Lots of those lovely gigantic fluffy white clouds racing about, and a breeze, but it was sort of invigorating. Especially when I got out of the car to walk to the entrance of the RD&E. I was almost blown right past.

This time I went really early, to avoid the mad panic of trying to park [last time I was in tears as I was almost late through looking for a spot]. I got stuck in traffic though, so I only had about 12 miles left in the tank and no time to fill up. So much for planning. I was wondering if that would be enough petrol to drive round the car park 600 times. Then I thought "I don’t care - if I run out, I shall dump the car and run for it". One less thing to worry about. But startlingly enough I managed to get a spot in 15 minutes! So I was very early. Nipped into the hospital, got a big fat sandwich and some crisps and sat in the car eating them, faffing about on the internet. Oh I love my iPhone. Excellent brainless distraction machine! And it was hot! Paid £3.00 for the privilege of parking there, so I thought I may as well make the most of it.

At 3.00 I went in. And happily, Aj arrived not long after. He also managed to find parking quickly. See? I told you what a good day it was.

Today's check up was no problem. Although my CA 125 has risen from 6 to 9, apparently that's fine. [take note!! it's gone up, but I am ok. It was 9 before, then 7, then 6 now 9 again]. Renninson, my demented surgeon, said that he is not even remotely concerned, and has decided I only need go back in 4 months now instead of 3. Yay!! The other thing he said was that he treats ‘me’ not my blood results, so I shouldn’t worry about those unless it jumped to 40 for example. Then he’d think more seriously. And I don’t need a scan because he whipped everything out, and I have no signs of a recurrence so far. IF there were any signs, they would do a scan. Otherwise it’s not necessary. Ok again. Scans are weird and if I don’t need one, I don’t want one. He’s the expert.

But at first I was like: "what??" and he was like: "the longer you go on with no problems, the less I want to see you. And the more 'normality' you can attain". Suits me thanks!

I got him to do a thorough check of my abdomen though, as I have a lot of pain after the circuit training - his comment was: "you would have had that before the surgery". I would? Who knows - I didn’t do circuit training before I had cancer. I had more sense!

But I have an ongoing/on/off pain in the left side of my abdomen. Apparently that is my lower bowel [after being prodded rather violently, he ascertained that] and it may be that it's not 'clearing' properly. Hence the pain. Oh joy. Now I will be guzzling gallons of water a day on his advice. Although I can't say as I've had any bowel problems, but if that will stop it hurting, good for me. He said that’s the reason I can feel it. So. Water. Lots of. I wonder if wine counts?

Then I was wittering on about the 'hard, thudding' bit under my navel - that's my aorta and apparently [Renninson is most peculiar - very dry humour] if I didn't have it, my legs would fall off?? whahahaha - don't you love it when someone is peering up your nether regions and cracking jokes?? hmm...maybe not! eheheh. And the only other reason I can feel it is because I’m so 'slim'?? Had to tell you that! I feel like a fat porker, but if my surgeon thinks I'm slim, well, it can’t be that bad eh?

So, good news all round, but a very sore gut this evening where it's been prodded, poked and the blasted speculum was FREEZING cold!! I felt like bashing him over the head! I would have, but after all, if not for him I wouldn’t be feeling anything at all. So he can do what he likes actually.

I am totally exhausted from relief. I did do rather well this time in the stressing out department. But I don't think you realise how much you're worrying until it's done. No more worrying now for 4 months. Cancer free once again. Hooray!

Monday, 6 April 2009

nerves or no nerves?

Monday, 6 April 2009
It's strange. The 3 monthly check up seems to engender terror in all of us OC girls - at the very least, fright or worry. I have been thinking about this, and it’s hard to understand why we are so afraid. For instance, we go every year for a cervical smear, [well, the rational women amongst us do - the rest just have no sense]. Although now I don’t need to do that, having no cervix! Heh heh - one less revolting thing to have to do!! That nasty ripping sensation? Yuck!!

The smear test is obviously to check for cervical cancer. Right. So, we do this every year, and we don't stress with it. Well, I personally never have. I just trundled off to the GP [in the UK] or the gynae [in South Africa], did the unpleasant deed [ankles in the air and little bits torn out of ones insides? horrid, but sensible] and trundled home again, expecting that everything would be ok. And I was right. I never had cervical cancer. Thank you, Oh Powers that Be. I don’t think I could cope with two types of cancer - although I know a very strong woman who has had to. Amazing.

So how is it that a check up every 3 months after having HAD cancer removed, nuked and bashed over the head is so stressful? I haven’t worked it out yet, but I will eventually. Perhaps it’s down to all the bad press that OC gets - all the 'statistics'. The interesting remarks that we’ll be 'dead before 5 years are out'. WHAT!!??? WHO are these people?? I would quite like to smack them one. Bet they never had cancer?! My oncologist [an expert in her field] doesn't agree with them. My surgeon [also an expert in his field] doesn't agree with them either. So, where do 'they' get their 'facts' from?? Personally I don’t believe any of it - I will survive this disease the same way I have survived coughs, colds, pleurisy...whatever. I will survive this too. It’s just another disease.

By the way, I forgot to mention that the mammogram was clear!! Woop woop! [I know - how could I forget to mention that? er...I forgot!] I had the ghastly little brown envelope through the post while I was working in Portugal - Aj rang me to see if I wanted him to open it - oh, of course I did! He opened it and read it to me over the phone. Well, that was a relief! Everything is clear, and I have an appointment for next year. Thank goodness I work for a company that allows me unlimited calls to my husband - and for Outlook, or I'd never know WHAT I was doing. And also thank God for such an amazingly understanding husband. Most men would have just opened the envelope. And I would expect Aj to- but he didn’t. He called me first. How great is that?

And - as for chemo brain - so extremely irritating. I really can't remember any appointment/date/event or anything unless I put it in my reminders. Yay for technology. Thanks for the iPhone!! It’s a brilliant little piece of equipment. But – bad if I actually forget to add something to it - after all, the phone can’t recall anything unless I tell it to!

Anyhow - tomorrow I have the appointment at 3.15. Jones will arrive sometime after that, as we know well that the appointments are never on time. Do I care? Er - no. I don't - those people have been so good to me that I will wait however long it takes. As long as I see either Renninson or Hong, I am happy.

And thank you all you crazy people who sent me cards and messages - it means so much!