in the news: OC O-Vax vaccine trial

This is my fellow blogger and OC survivor, Nat, starting the new O-Vax vaccine trial. She is the first woman in her country to have it, and for us it's such an exciting event. And she has been on the News! See below for the video. Fantastic; go Nat, you're amazing.

Here is the link for more info on this trial [copy and paste into your browser]:
http://clinicaltrials.gov/ct2/show/NCT00660101?term=o+vax&rank=1

an interesting ten days

Friday 30th January


I am becoming lazy with the blog. It’s ten days since I wrote anything. This is not good. I need to record what’s going on with me as a Survivor, just as I did while I had cancer and went through chemo. So. Here I am.

What’s been happening? I had a birthday - obviously....that was nice. But Mum was ill so they couldn't come down. And I was ill, and worrying a lot. BC I would'nt have, but AC, I do. I had a stomach bug since the day before my birthday. It was odd, as I had a constant stomach upset until Friday, but no pain or anything. Anyway, we went out on my birthday for a late lunch / early dinner at the Coombe Cellars. It’s a great pub - situated on the estuary, so the views over the water are really lovely. Very calming. The children play along the waters edge, there are dogs running in and out, birds feeding. It’s a very nice place to go. And the food is good!

We met a friend there whom we haven’t seen in a while, with his girlfriend whom we’d never met. It was great to meet her - she is an oncologists nurse! Unreal - we had a strange [and I enjoyed it a lot!] chat, as she was wondering how we [the patients] see the nurses. If we get angry with them, or dislike them. And I had to be honest - at the first chemo I really didn't like my nurse - he 'seemed' clueless. But, he was training [and I was scared], and at the 2nd chemo and thereafter, he was great. So I told her that, and that to my mind, new chemo patients just need to be dealt with by old hands. Just the first time - so that you feel confident. It was nice that she was interested in how we, the patients, feel about the nurses. I was pretty impressed with her. I am sure her patients will benefit from the fact that she is genuinely interested in how they feel.

What else? Ah! Nat she’s famous!! What a brave girl - she is the first woman in her country to have the ovarian cancer vaccine. And this week she was on TV!! Fame at last - she was amazing in the interview, so confident, and eloquent [see above]. I wish they had shown more of the actual half hour interview. But news is short, so they didn’t. Pity. But even so, seeing her live was great, and the publicity benefits us all. Now we all pray that this works for Nat - she is so brave. It will.

But I digress - the stomach bug. Grr. It’s so irritating that AC every little thing makes you a paranoid maniac [or so it seems]. BC if I had anything like that I would have just waited it out, not thought twice, and got better. I’ve always had a stomach of steel - nothing ever really got me. Even tap water in Italy!

Now, AC, I was in such a state [and trying not to be, but failing dismally], as I was imagining that the cancer that was initially on my bowel had decided to come back [I imagine that quite a lot actually]. That is so crap!! All week I was checking my stomach to see if there was any strange bump or lump. And of course, because I was looking for it, there it was - it seemed I had a painful bump on the left of my belly. So, no sleep. Rude and grouchy behaviour. Deranged imaginings and furious tantrums when I was alone. I know you are reading this Andrew - I know you are there for me 200%, but I am so sick and tired of telling you horrible things. Horrible thoughts. I would just like to tell you I am ok all the time. But some days, I can't. Some days I just feel like I am going mad and you know those days. Friday morning was one of them when I woke up and instantly went into stressed out mode. Because I was worried about my bowels and cancer, I freaked about the bills! Oh well, I suppose misdirection can be a good thing? :o)

Anyway...I have gone past the bug - everything seems back to normal today apart from a hard swollen belly, but it seems that’s a norm I will have to get used to - if you eat a little too much, or stand for too long, that happens. Bah - how bloody irritating.

What else? Oh, cheery [and unsubstantiated] articles in the news that milk gives you OC...eh?? I hate milk and have never drunk it. I have totally skimmed in my coffee [I am sure there-s about 0.01% milk in it, if that]. More 'news' - obese women are more at risk. Oh, doh! Probably because they wouldn’t notice a little lump in the abdomen. I wouldn't say that that makes obesity the problem - just the fact that obesity hides the symptoms.

Also, I am pretty distracted by the online chat we have on FB. It’s such fun! We seem to talk about the oddest things - normal things like how revolting MacDonald's is [or how fab, depending on your outlook]. And one very odd topic was about Vaginal Dilator’s...thanks Tracey!! What a topic....

Now we have snow. Today I had a free reflexology session at Force [excellent!]. And we have a great log fire to keep us warm. And we are alive! What a good week it has become.

dedication....

it's so true - at some point in your life, you really need somebody
to stand by you. And I have been so, so lucky in having so many friends and family that have done this...thank you...enjoy the track!!
xx

and a FAB birthday song! thanks I!

hilarious birthday card! thanks F!

Try JibJab Sendables® eCards today!

things to be cheerful about; part 02

Tuesday 20th January

And there’s more! What a fab day today for all my American friends - all going wild with delight about Obama. I am so pleased for them. Lets hope he can cope with all the chaos he has landed in - rather him than me. And I am still really buzzed this week too. Frankfurt went far, far better than I expected. I was very worried, as the exhibition we went to is MASSIVE. Lots of halls. Tons of walking and looking and trying to absorb things.

But not to worry! The friend I was with [oh yes, it was the Style Queen again] is a diabetic. It's the first time in my life I've ever had cause to be grateful that someone else has a complication that is outside the norms. I know that sounds weird, but it means there is a greater understanding if one feels tired etc. So, we stormed around the exhibition like two crazy women, and managed to survive until lunch time - then I had a fatigue attack. Very handy, as we sat and had lunch and that was time enough for me to get my act together. At the same time, SQ had a bad moment too, so we were in simpatico. So we ate a semblance of a healthy lunch, then off we went again. Exhausting to say the least, even when you are perfectly fit and healthy...and we managed! Woop woop! And Wednesday evening we were referred to a wonderful Italian restaurant, Paulos [by a cheeky Irish barman], where we had a superb celebratory dinner [my 2nd in one week!]. Paulos nicely combines old-world German architecture with a modern Art Deco look, and it provides a fantastic view of the Main. The waiter ran about in the street after dinner to get us a taxi - brilliant.

The next day we attended a couple of lectures at Heimtextil, and then we were off again - travelling is NOT what it’s cracked up to be, but this wasn’t too bad as I flew into Bristol, which is only an hour and a half drive home. So I arrived at about 7.30pm.

Saturday was more circuit training - Sunday I could hardly walk [exercise is not my forté!], so we walked to the Quay and then to town and had a few glasses of wine. Then walked home again. Hmm - my celebrations never end! Monday, more circuit, then today off to Slimming World, and YAY I had lost 2 and ½ pounds! Only 13 and a ½ to go...eek. Tomorrow, more circuit, as I intend to try to go three times a week - fitness helps to fight off recurrence apparently, so I am there. Plus being overweight is also proved to be an additional risk with regard to OC, so must get those pounds off. And I will. Menopause or no menopause!

Thursday is going to be horrible - I have to get my hair cut. I don’t want to have it cut, so I am dreading it. But, at the moment I rather resemble an inverted scrubbing brush, so I need to do something about it - a hair 'style' would be nice. We will see - I shall post photos if A: I kill the hairdresser, and B: it looks ok!

things to be cheerful about: part 01

Tuesday 20th January

wow, what a great week I had last week - I wish I could share how good it has made me feel with everyone I know! No that’s wrong - I wish everyone could feel as happy as I am right now, and as well as I feel right now.

Monday I went to see my Great GP, [I love my eccentric GP] as it has been niggling me that in the States, they send you for a mammogram if you have had OC. OC and breast cancer are quite closely linked and that makes me a bit nervy.

In the UK you are only entitled to have a mammogram free after you turn 50 - there is a sensible reason for this, as apparently the breast tissue 'thickens' after you hit menopause, and until that happens the mammogram is not much use. As I am now in menopause, albeit surgical, I asked him to send me for one. No problemo, says the Great GP. So, viola! I have a breast crushing experience to look forward to. Can’t be as bad as being hacked in half, so I am not concerned. Better that than getting surprise breast cancer.

Monday night, off to circuit training. Groan. But I am improving, and I am definitely noticing a difference in my energy levels. And I have a semblance of stomach muscles!!

Tuesday - the Dreaded Day. The bloody check up. That was at 3.00, so I had the whole day to wait, but it was a mad day, as I seemed to run from pillar to post organising a zillion things; check in on-line for Frankfurt the next day [another new experience - so cool! you can download your boarding pass! brilliant, no waiting!]. Find the passport and the letter. Do some work. Order some groceries so Aj doesn’t have to live on rice while I am gone. Etc.

Eventually arrived at the time, Jones was waiting outside in his speedy van to zoom me to the hospital. That was unplanned so it threw me and I left the car unlocked I was in such a hurry. Got there - no parking - aaargh stress, swear etc. I jumped out and left Aj to it. So of course he found a spot almost straight away. It was quick this time! Last time we waited about 2 hours. Which I don’t mind [I seem to go into Zen mode once I am actually there], but nicer to be in and out.

This time I saw Mr Renninson. My beloved surgeon. Dr Hong had sensibly done a runner. Mr Renninson ate a lot of Christmas dinner I think, as he is looking a tad portly [strange what you notice!]. He marched in and the first thing he said was 'your CA 125 is 6'. So casual! SIX??? I was so pleased I almost fell off the bed, knickers or no knickers! As for Jones, well I would love to have a photo of his face at that moment. Really that’s when you know how much someone loves you - the total relief there was shocking.

Anyway, Renninson did the physical exam [NOT as thorough as Hong, but I won't bore you with the technical details and I am sure he knows what he’s doing]. He then pronounced: "right, you’re ok, you can bugger off". What? I had a million questions! And what was an eminent surgeon doing saying 'bugger' anyway? I managed to remember one, and had him in fits. One of the girls in the group we have started on Facebook [marvellously named by our Tracey; ScAaaarrrggghhh!! Tissue – heh heh] told us all that when they do the full hysterectomy / oopherectomy, the vagina then becomes like a sock. It's not attached, and could be yanked inside out if they didn't sew it to other things!! Yuck. What a thought.

I was very sceptical of this, but promised the girls I’d ask about it, and so I did. Renninson’s face - hilarious! I am sure I was his tea break 'spazzo patient story'. He told me in no uncertain terms that that was not true. His final words were: "that’s a load of bollocks". Ok, don't mince your words there R! He was obviously on a roll that day. Full of cheeky remarks. Apparently [and obviously] the vagina is attached to lots of other things anyway, so there’s no need for them to sew it to anything else. Good show! Right, off we went, great relief. To say the least. Rang Mumsy with the good news, text all my friends the same and off home.

Right - out of there and off to Bristol to stay overnight with my darling Godmother. Had a superb dinner, and a lovely evening - up at 5.00am to go to Frankfurt and she even drove in front of me so I could find the airport in the dark. Such a darling. What can I say - I was still delirious from the results the day before, so likely would have ended up in Brazil. Thank you sweetie.

And THAT was all nice!!

OFFS!!...don’t ask

Friday 8th January

well, not a very good day actually. I know everyone thinks I am really positive and strong. Well, don’t be surprised when I am not. I am just like you - normal - I also freak out at the slightest thing. Not spiders - no. But cancer returning? Yes.

I do try to be positive, mostly. But today was pretty bad. I am not sure if it was the circuit training or just a glitch, but all day today I have had horrible groin pain where the original cyst was removed [maybe ghost pain like when you have a leg chopped off? god what a thought] and terrible low back pain. I was trying to work through this, but had to jump up every half hour and walk around - not too good for the concentration! Work, jump up - work, jump up - brilliant! like yo-yo girl....

So. Walked around the kitchen [which is small!] crying and railing away. Then my Mum phoned and when I put the phone back, I smashed my head on a hanging candle thingy we have – right on my new scar!! Well, that was it - I screamed and cried and cursed at the top of my lungs. Good job we have a 300 year old house with very thick walls.

I think the DHL chap was a bit startled at my appearance today [he is used to me being in a dressing gown, but not used to a wicked hag who is rather abrupt] and let me sign without checking. Nice delivery by the way - it was 5 copies of the book I illustrated for my friend Isabelle’s Mum. So one good thing today. The books are so cute!! I feel rather pleased at having helped Jeannine realise her book. Jeannine wrote it - it’s lovely. I am so proud that I was the person to illustrate it.

Anyway. Back to complaining. Well, not totally. Andrew is feeling better [yippee! fantastic – he has been so ill, it’s great to see him back to a semblance of normality], so off he went and got me bottle of wine and a bit of shopping – good thing too, as otherwise I should have had to go myself – hmmm, bad idea. I am NOT feeling sociable at all. So that was very nice.

But I also feel bad, as one of my dearest friends brother is having terrible problems. Life threatening, and horrible. I think of him every day, as I know that just like me, he must wish that his life were normal – and that he was better. I AM better, so I can really sympathise. He is on constant treatment [painful and unpleasant] and his family are always wondering. So, we all send him our best wishes and thoughts...Nelson, be well soon.

And [just so you know I am not perfect - er, doh] I spent all day today crying. I think it’s the ‘Check Up Thing’ - we trundle along for 3 months [ideally] not thinking about cancer; then suddenly we have to think about it, as we have to have 'The Check Up'. Which is great, as we have 3 months more of being cancer FREE afterward, IF everything is ok when we go. Hopefully. But also not so great, as it reminds one of where we actually ARE. In the land of: 'Oh yes, you may have 5 years to live' or 'you may not'. Oh that totally fucks up your head. And no, I am not apologetic for the obscenity - that’s all there is to it. Try it - you’ll see.

Oh and thank you everyone for NOT saying 'it’ll be ok' – that would really be infuriating. I know that’s the ‘thing’ to say – but actually, it’s not – the ‘thing’ to say is 'I HOPE everything will be ok'. But even so. Thanks to everyone who 'thinks' everything will be ok – I hope so too. I really do.

yesterdays newspaper article

Tuesday 6th January

Here's the article that appeared in the Express & Echo yesterday. I was horrified at how I look in the photo [about 100!] but I was pleased with the article, as there’s only one slight misquote, as I wasn't given two NHS wigs, I was given one, and bought the other one myself just in case - in case of what I'm not quite sure! :o) But maybe that was me, not explaining properly.

There is more info on the symptoms, as a separate box in the actual newspaper, and she did quite well I think. Yippee - more publicity for Ovarian Cancer ! So, who can I attack next...

back to normal?

Sunday 4th January


So, I did feel better the next day! :o) Onward and upward...

Well, Christmas is now behind us once again – not the best one I’ve ever had, with Aj being so ill, but still a nice break [and a nice duck!]. But we are really going to have to try and arrange a ‘proper’ holiday at some point – away from the house, the cold and the bills! This is the worst thing about us both being self employed – every time we take a break, it costs to get someone to run the shop, and I worry now about needing to keep my holiday days in case I need them for some idiot reason. No paid sick leave, no easy ride. BUT saying that, we had a break, so we can’t complain. Some people didn’t stop work at all.

We were talking about the madness of the UK with regard to holidays – suddenly it isn’t the ‘Christmas Season’ anymore – it’s the ‘Holiday Season’. What? hmm...interesting...Anyway, best not go down that road! And of course now that Christmas is over, it’s SALES, and DIET and get FIT. Then it’ll be Easter – eat tons of chocolate, then diet and get fit again...oops, then it’ll be Christmas again...like a manic merry go round of hard selling of just about anything. Bah. Oh, and humbug. Why not?

But of course I am being sucked in this year – I shall be there tomorrow, jumping about in the exercise class at Tedburn, and down to the slimming class on Tuesday if I am not hauled away with a cardiac arrest from Julies class. The difference being, I am not doing it because I ate to much stuffing over Crimbo – I am doing it to try to regain my self esteem. Which hit an all time low last year [so strange that it’s already ‘last year’!]. But it’s slowly and steadily creeping up again. Five months out of chemo, so better get sorted I think!

I am starting to realise that yes, actually I should be pleased with myself. We had a right SOB of a year, but we’re still here, and still together and on the up. And I am getting a little more normality every day. I have gained a fabulous network of AC girlfriends in addition to my family and friends. I have managed to cope most of the time, and remain positive. A hard one, but I’ve done it. Amazing, as if anyone had asked me before I got cancer, how I would cope, I would have said I would NOT have. Well, well, we learn something about ourselves every day – it’s great to learn I am stronger than I thought.

Tomorrow I am off for my blood tests in preparation for my 2nd 3 monthly check up next week – my state of mind is odd, as I am not nervous, but I am agitated. I can’t seem to concentrate well, and everything seems a bit irritating. I don’t feel like talking to anyone, yet I feel like babbling away like a maniac sometimes. Claire’s right – we need to find a way of coping with the run up to the check up, that doesn’t involve violence upon our fellow men ;o)

I have lots to ask Dr Hong – why do I have those pains in my tummy, why are my joints so agonising in the morning, why are my eyebrows falling out again – oh, and what about the ligatures [cheers Stace heh heh]. And a few other things of course. Will the questions ever end? Can I know enough or do I know too much? Some of the AC girls don’t know much – I am not sure if I could cope with that. Anyway, eight days to go. Which I shall try to fill up with work and my new good intentions...

One of those BAD days.

Saturday 3rd continued...

I know that probably everyone who has had cancer has the kind of day I am having today at some point.

Can't be cheerful ALL the time. And I think that’s the problem - trying to be so bloody cheerful and positive all the time. And usually I succeed. But today, not. Cheerful - bollocks. I'm tired of being cheerful.

I just wanted to go shopping like a normal person, so I had Aj drop me in town - it was really cold today - about 2 degrees here, in the sun. So I got all bundled up and off I went. Usually I hate shopping, but I had that head on where I was really in the mood for it. This is a very rare thing!

But the cold - ooo, it was awful - it seems to affect the surgery site something rotten. My stomach started getting these shooting pains and then in the last shop I ventured into, I felt like I was going to pass out. Yay - the assistant even asked if I was ok, so I must have looked a bit shocking [even then I was impressed at someone being kind though]. So I had to call Aj and get him to pick me up, and just waiting about in the freezing cold almost made me cry - I was SO frustrated and SO cross!!

Came home and went to bed - this is the first time I've done that for an age. That made me upset too, as I feel like I've stepped backward - and I know we all tell ourselves how 'lucky' we are, and how we 'should be grateful' etc etc blah de blah - but really today I just wanted to smash something - it felt like washing your clothes in blood - they will never be clean so why bother?? I didn't feel very grateful at all and just wanted to be in that place before I got cancer and became 'wimp woman'. Even while I am typing this I am thinking about Nat being so strong and wondering why I am such an ungrateful thing, but I can't help it.

Well, there we are and I am sure tomorrow I will wake up and bash myself over the head for this, as I will be ok again - but I did wonder...maybe we all have these days, but feel we can't admit it, as we feel we have to be 'positive' and 'cheerful' all the time for everyone else to feel better. And as you know - usually I AM. But not today.

I am so glad I have this place to go to.

The Christmas Trip to London

Andrew asking directions outside Covent Garden station



the Royal Opera House


me! at the Opera House! so cool, what a lovely Christmas present thank you to my darling husband...

Christmas...what?

Saturday 3rd January 2009!


I am sure I am losing the plot. I usually start buying Christmas presents in June. This year I seem to have blocked the whole idea of Christmas, and by the actual day, I had done hardly anything. It was like I just couldn’t get my head around the whole idea of festivities. It doesn’t help that usually we are in the hot, sunny Gambia at this time of year, and as the country is half Muslim half Christian, Christmas is a lot less 'in your face' over there. So the UK brashness seems a bit vulgar – buy this, buy that, you 'must' have all of these...oh for heavens sake. Can’t we just have a lovely rest and a big dinner and have done with all this spending on things no-one really needs? Which is what we did. Our families were great and we all just swapped cards, calls and some little gifts, so we didn’t have to travel anywhere except to London...phew.

For our Christmas dinner the kids came down, I did the fabulous 5 Hour Duck [it seems an infallible recipe! see it here: the Five Hour Roast Duck ], Andrew managed to stay on the sofa for the weekend and dole out pressies and then they all went away again, stuffed to the gills. Perfect!

Our Christmas was extra muted anyway, as Andrew has had that vicious flu almost all the time we’ve been on holiday. The trip to London was amazing, and of course we saw our lovely friends up there too - the ballet – fabulous, I LOVED it but when we got back that was it, Aj went into melt down and has been in and out of bed most of the time. We looked forward for so long to having these ten days to have some fun that it seems a bit harsh that he’s been so sick. But he’ll get better and that’s all that matters. I am sure the flu hit him this hard because of the stressful year he had last year, and it was nice for me to be able to look after him for once. Although it freaks me out that he has been so ill – God knows how he felt about my illness!

London was interesting for me, as it involves LOTS of walking, the tube stations involve LOTS of stairs and the weather was chilly – although we were lucky, as it was mild enough to walk everywhere without going blue. I had a few peculiar moments, where we had to stop and rest for a bit, as I was shattered from walking, but I managed to enjoy the three days immensely, even with the fatigue. If I use my head and stop soon enough, I can re-gather my strength within about an hour. The only thing I am really having trouble with is the cold – it makes the site of the surgery really hurt and it drains my strength really quickly. Lots of nifty stabbing pains in my tummy and that’s always scary. But it resolves itself if I rest – but usually takes a nights sleep to really go away. So, I now hate the cold even more than I ever did, as it debilitates me so much. Grr. I need an electric suit that I can switch on when I’m outside! Toaster Woman...

So apart from that I have discovered that eating too much [and that’s not an awful lot either] leaves me with a painful tummy too – better to eat little and often or suffer the consequences. So I have been happily munching my way through lots of pâté and crackers etc – and not at all concerned about weight...until TODAY!

Tadah! Monday is the start of the New Regime. As in; I have GOT to stop being so self indulgent – just because I had cancer doesn’t mean I have to look like the Dunlop man for the rest of my life. I have tried this already and failed, but now I am determined. Chemo is 5 months ago – time to get a grip. Monday and Wednesday evenings I am off to Julie's circuit training class. It’s just for women, and lots of different kinds of people go. So that’ll be an hour each time. I am sure I will really struggle at first but I don’t care - I am going. Then I am going to go back to the slimming class I did before - oooo, groan.

Exercise AND healthy eating?? It’ll probably kill me!