check up or death sentence

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

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

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

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

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

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

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

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

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

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

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

women rule!

Between freelance work, which is buzzing merrily along at last [fingers firmly crossed about THAT - look! I even placed an advert! - my self confidence is at LAST reappearing.] And fund raising for Cuba and waiting for my check-up and trying [with limited success I might add] to TRAIN for Cuba, I haven’t much thought about an update on here. But due to some gentle nagging from various parties, here I am again.

I think the most important thing to the majority of followers of this rather lazily updated blog is that I am still NED! I had my check-up on the 11 June – it was the last 6 monthly check up I ever hope to have. In August, I reach my ‘5 year all clear’ [scary!] so my next one is in a year. Changing over to an annual check up is strangely disturbing. Like letting go of the hand that is supporting you. One wobbles a bit at first. I am still wavering between relief and panic. Mostly panic. Which I will get over. I still have a large risk of recurrence – but I also still have my amazing cancer team at the RD&E. So. Not thinking too much about that.

In other news, I have made it to the semi-finals of the Venus Awards! Devon page here. My category is sponsored by The Old Bag Company. For the Inspirational Woman category, there were 307 nominations. I am so touched to have made it through to the semi finals! Amazing. I am not quite sure how many semi-finalists there are, but at the end of the day, just making it through AND being nominated at all is such an honour. Thank you Rita and sundry other friends for nominating me!

And I am cycling! Training for the 400km across Cuba – I even have a new bike, kindly sold to me at a stupid price by my fellow cyclist, Kate. This weekend coming, we will be sallying forth to do the 60 mile Force Cancer Charity ride. I am convinced I haven’t trained enough, but hey ho – we will do it! Check out the shirt design by Chameleon Design! This is Kate and me at the training weekend in the Cotswolds. Good fun!

Other good news is that I have beaten my fundraising target! Thank you SO much all of you who went to brunches, bought raffle tickets, appeared at events and donated raffle prizes. It does mean a lot to me, and I note every single donation, no matter how small – every little helps! Thank you all!

It's not about me

What a week. I went to my BNI meeting on Wednesday and after being unmercifully ragged about the YOU magazine article, one of the members blurted out privately to me that a friend of his had died that week of ovarian cancer - in one week! And just before her wedding.
I almost threw up in his lap. He was sitting next to me. Fortunately I didn't but it was a close call. My skin went cold - horrible. It was 7.00 in the morning! It turns out that the woman in question had had ovarian cancer 4 years back, and been in chemo ever since. Her story is here. It's tragic. But I was relieved when I read it - sad to say but I felt better knowing she hadn't been killed by this in only a week -  that would have been too much...

Other friends in the OC facebook group are going through hell. Rising CA 125's, CT scans...random things that are scary to say the least. They are my friends. It's hard to read their messages and not want to jump or a plane or train and go and see them...sadly, it's not possible. And it's hard to deal with. I just want them all to be well. Or at the very least, to achieve remission for some time.

And that's the worst thing - some women never get into remission. That so sucks!! And that's why I am so concerned with raising funds for research!

I get the impression that some people have the idea that I am 'self aggrandising' with all this 'Awareness' stuff [radio, TV, newspaper etc] - just for them/you to know; I would rather have never ever been heard of by anyone than have had cancer.

But as I HAVE had it, and as it may kill me eventually, I WILL take every opportunity to raise awareness, and I WILL try to get it out there as much as I can. Think what you want - as long as there's a chance of even ONE woman being saved/warned/woken up - I will be there.
This is not about 'me' - this is about what I can do to help by being out there. And I am simply trying my best to do just that. Things like live TV terrify me - but I will do it, because an ordinary person like me could just make someone think that 'one' thought that may save her life. 
I hope to help women like me - women who have no IDEA about this insidious disease. Women who could survive a diagnosis if they get diagnosed early enough.

So, no, it's not about me - it's about being AWARE!!

anyway…

I'm not strong. Not at all – I just do things as they come along. And I deal with things the same way. As they come. Once they're done – that's it. They're done.

Why is that not the case with cancer? Is it because we are constantly TOLD we are at risk of recurrence? If I had never been told that, I am sure my life would be [if not simpler] at least happier. IF I didn't KNOW that ovarian cancer has a very high incidence of recurrence, would I worry quite so much? Perhaps not. Perhaps. Who knows? It's now a moot point. I KNOW it can recur. I KNOW the incidence is high. I KNOW I am at risk.

It's exhausting.

I did the Kenya cycle – as best I could. I am so pleased I did it – the women I met were and are unbelievable. I loved it! Imagine…3 years ago I couldn't cycle to the Exeter Quay!! [that's about 1 mile from my house!]. My life is different now because of that. Ann Frampton is amazing – she sets up the rides – her mother died of ovarian cancer and she survived cervical cancer – get on girl! She does wonderful things for awareness and fund raising. I would love to be her assistant….

Here we are at Faraja – me, Shaira and Ann.

This week though, I am getting into the 'Fright Zone'. My reminder popped up in outlook – 'get the bloods done'. Next week. O.F.F.S! So I rang and made the appointment. Today. That in itself is an effort – it's like if I ignore it, it may go away. Well, it doesn't. It's taken me 3 days of reminders [grr] to get my butt in gear to phone.
So many times I have rung up at the last moment and had to have a mini cadenza to get fitted in [always my fault; but I always make the surgery appointment woman feel bad…and she always manages to fit me in. yay her]
Look at this – I look [and felt!] as fit as a fiddle! [fit as a fiddle? what is that anyway?] But, I do and did. WHY am I worried??

and here I am [alive!] at the end of the cycle with Vicky. Must admit, we both look rather scrumptious ;) NOT! But we ARE triumphant! As we should be.

So. What? I stood in the garden this evening. Looking at the sky – it's so cold. And so black. And so BIG.  We are so little. I wished for my life without recurrence EVER – I wished for some normality. I wished for my life without bloody cancer at all. I cried. A lot. But I am not alone in this – I have the FH, friends, family. I have the girls on the face book group. But actually – we ARE all alone in this. Aren't we?

All alone…not just us – the cancery types, but the people who love us too. They are also alone – with their worries, their thoughts….no matter who tries to understand. No matter what anyone says – we are still awake at 3.30 on the morning…alone with thoughts of a horrible death…alone with thoughts of our loved ones deaths…it's hard.

But. And it's a big but. We have support. We have friends. We have understanding from some, if not all.

I am so grateful for that.

Here I am – with Lake Victoria! Amazing…

thinking too much?

I posted this earlier. On the Facebook group. Then I thought about it. And decided to post it here too.

Just a thought for everyone who is still in chemo. Or has recurrence. or is still struggling at all. A new diagnosis – crap right?  Definitely worse than someone buying you jeans from Sainsbury’s…and that is BAD.

I have just been wandering through my old photos. Aren't pictures emotive? I had Stage 3B cancer here – and had no idea…I still can’t believe it.

The 2008 ones, when I still had cancer, are quite an emotional roller coaster for me. I don't usually look through them. But I did this evening. There are pictures of me with Grace [my grand daughter] just after I had my hair cut off, ready for losing it via chemo. I recall how I thought then that Grace might never see me again. Or I might never see her again. I remember thinking quite coldly and clearly about how I would organise the girls [my lovely step daughters] to look after the FH. And how I would get Mum and Dad to do this that and the other. I remember Grace asking me over and over if I would be ''all right''. And me telling her that of course I would be. And wondering all the time if I was lying.

There is a photo of me with my brother – and I remember thinking that I didn’t want him to leave. He came all the way from Brighton. I was so chuffed. I just wanted him to stay for a while – but life gets in the way. Doesn’t it. I just didn’t think I’d ever see him again either.

Get that horrific wig!

It just struck me that no matter whether it is a first dx or a recurrence...we feel the same fear. The same regrets. The same sense of loneliness.  The same sense of ‘WTF’???

And I just wanted to say - sometimes I am frivolous on here. Maybe the things I say aren't quite what you need to hear. BUT. I do feel that fright. I do feel how you feel. Never doubt it. But I can’t be serious all the time. And I don’t feel I should be actually. I can’t do downer posts because I am not that person – but saying that, I am so bloody lucky. And very very grateful for that – I can’t believe it some days. Remission – get it on!! And now, astoundingly, I have days when I don’t think about recurrence at all. But they are a rarity I must admit.

I wish good health for everyone - I wish cancer would simply fuck right off. This evening I am just thinking of you all - and it brings me to tears. I wish we could all just get together – all the women [the fighters!!] I have met through this blog, through Facebook - just once. I think that has to be my next fundraiser girls!

lots of love to you all. Just keep your head up!!

scabby hands – delightful!

what fun! I have a new 'lurgy'! Apparently it is called Dyshidrosis. Yeah, right. Very pronounceable – NOT. Very irritating – YES. My palms itch all the time and the skin is peeling off. I am resisting the urge to peel it off in strips after doing that once and grossing myself out totally. Bloody palms are not ladylike. Bloody palms are GROSS!

So, off to the dermatologist it seems? First get some stuff from the GP. Diagnosis for Dyshidrosis is to take a hive specific anti-histamine. I've been slapping steroid cream on it to no avail – apparently the stuff that works is a very strong steroid. Ffft – I don't like steroid anything. But needs must, as this is driving me mad.

It seems emotional stress may also further aggravate the condition. Well, I've certainly had enough of THAT this year. And last year.  Odd that stress should present itself as blistered palms though. Although saying that, my step daughter Vicky breaks out in Psoriasis from stress – similar I suppose. This is a walk in the park compared to what she goes through. But scarily, Dyshidrosis can become chronic. It's already spreading to my fingers. My hands feel really tight and the itching is unreal!

I've always felt that I 'get my stress out' because I vent quickly and suddenly, and then forget all about what has upset me. I am not a person who bears grudges or holds onto things. But perhaps some of the things that have upset me recently aren't so easily dealt with or forgotten. Perhaps I should deal with them. It might cure my itchy palms!

One of the things being a lot of new pain in my groin and tummy. Scarily, this is worsening. I am hoping it's all down to the adhesions. Roll on the next check up…

check up time again…

Check up on the horizon. Bah. And here I am, having a GREAT day just 2 weeks before…why am I worrying??

Trying to be normal. But it  makes me drink too much, smoke too much [giving THAT shit up soon!!], talk too much [well, 'gibber' would probably be the operative word actually - think 'bouncing off the walls'...] - I stand in my garden looking at the flowers and cry for no reason.  My behaviour is erratic. I am out of control a lot of the time. I think about death. A lot.  STILL!! Why?

My husband is an angel when this is going on. This week he brought me flowers for no reason. He understands, and he lets me 'get on with it'. He doesn't judge me or hassle me or question me - he allows for lunacy, and he allows for bad behaviour. Thank goodness for that. Not many people are so forgiving.

I'm not sure how I'd cope without him actually. I have total free reign…I can do whatever I need or want to, for a limited time, and know there is always someone to save me if I push it too far. A safety net. I need that, as I am an addictive personality and a crazy person at the best of times - the FH helps me survive myself.

It's odd - I STILL can't cope. I do cope - but I don't. Pathetic really. But I am not so far from the diagnosis and surgery and chemo that I feel safe yet. I do wonder if I ever will. Feel 'safe' I mean. I hope I will. Eventually. I am sure I will - but when? I still starkly remember being bald. I still remember the shocking pain in my legs from chemo. I recall the night I had to phone the ward because I suddenly developed a burning rash. I recall being frightened quite a lot. And trying so hard to hide that.

I mean, at the end of the day, I'm not a weakling, I'm not new to this. So why do I have a total meltdown at each check up?? I think I know why - because at each check up, there's the chance that MAYBE this time the cancer may have returned. Quite often with ovarian cancer there are no symptoms of recurrence until it's late in the day. That sucks. No matter what you do, it could be there, sneaking about, ravaging your insides - and you'd never know. Fuck. It's so frustrating. And so scary.

BUT - hey ho, we have to KBO eh? Churchill understood the dangers of defeatism and poor morale as a soldier and leader, so he set the example needed to inspire others around him…and he kept “buggering on.” Well, I shall just do that.

Bugger…on.

smoking and smugness

Look at this picture - it's my grand daughter - such freedom…had to share it!

I am feeling rather smug. Or maybe that should read 'surprised'. Not sure. I have managed to lose 6 pounds/3 kilos of the chemo weight gain [hmm - yep, smug it is! bloody steroids!] AND at the same time I have managed to cut back on my smoking by at least half. Maybe more. Yay me. And this is not due to any nagging by anyone [I do make a point of NOT listening to peeps who 'advise' me on my life]. It is due to thinking. Oh, and exercise. Of which I shall be doing more very soon. Not because I like it, but because I NEED it.

I think a lot about this smoking thing. People who don't smoke now; ex-smokers for instance [ugh - they are the worst for being sanctimonious] and those who have never smoked, seem to think that all smokers are a pack of thoughtless, inconsiderate fools who just don't care. Well, I for one, do. Every time I light a cigarette, I am thinking about it. I enjoy smoking, don't get me wrong. And there's the thing. I wish I didn't! And actually, as I am now smoking less, I enjoy it more. Grr. What's that all about?? But every time I light a cigarette, I wonder what the hell I am doing - of course, that doesn't stop me. I've been smoking for 33 years. It's not that easy to up sticks and not do it. But maybe I am getting there. I hope so. A smoke free Sandhy would be rather nice. I think…

Another thing - I am totally stunned by how generous people are being for the Women V Cancer cycle!!  It's amazing - thank you so much everyone who has already donated. I know very well that everyone is having a hard time right now - so, thanks!! I am truly touched.

Last night we went out for dinner with friends - it was fab - lovely people, hilarious conversation and wonderful food. Usually I don't eat lamb, in fact I NEVER eat lamb [greasy - ugh!!] - but actually it was a delicious and delightful meal. Lots of fun. Lots of vegetables! Until I awoke this morning feeling as if my head had been hit by a dump truck at full speed… But at this moment, I love my life - honestly, even having no job [this is bad] I am enjoying life to the limit. I am almost crazy with how good life is…bring it on!! A little worrying, as it sometimes seems as if when things are good, some ghastly thing is waiting in the wings to happen…

The only horrible thing this week has been that some of my friends are dealing with recurrence. That totally sucks; it really does. But, having that thought at the back of my mind all the time [that I too may have a recurrence at some point], it's a good thing to know how other women cope. It's a good thing to be in touch with them. Just in case. They are so brave. But I so hope I never have to deal with that. It would really be a nightmare. And I'm not so sure I can deal with those type of nightmares any more. Can I?

being a ninja

Image: azuzephre//jeff thomas

You know I already mentioned how hard it is to accept good news? Well, it gets easier.

The last few days I seem to have been in a daze – after thinking for weeks [yes, yes, I know it was stupid – assuming things always is] that I was in for a recurrence, now I am in this parallel universe where I am so happy! So. No. Not a daze. A surreal state? You who have followed the blog for ages will know very well that I am not a person who 'does' surreal – I like to be completely in the here and now. I like to be right up there with the facts. But this is something else. It's like a weight has been literally lifted off my shoulders.

Sounds prosaic right? But it's true. I can't think of ANYTHING in my life that has made me happier than knowing the cancer hasn't come back. And to be honest, I have had a LOT of wonderful things happen in my short life. But none of them would have the effect that a return of cancer would have had on me and mine.

The thing is, this isn't just about me. It's about the FH too. And my family; my friends. That is one of the reasons this is so great. I was so worried – imagine them having to go through all this AGAIN because of me. Uff. No thanks. I am tired of pretending that everything is ok. Being Ninja Cancer Girl gets boring after a few years…nice to actually really FEEL ok. And mean it.

So – I am feeling on top of the world!! Mainly for both of us – me and the FH. Because now we have time. There's ALWAYS going to be the worry of a recurrence – but  it doesn't happen like lightning. And to be clear in the first 2 years is very  encouraging.

I appear to be in remission. OMG!! It's the most amazing feeling. At last. Long may it go on!! Ad nauseum if possible? And thank you SO much all of you who have been, and still are, there for me. Your support means the world to me. Thank you.

But thank you most of all to my wonderful, amazing husband. You are the BEST thing that ever happened to me.

biopsy results

GOOD NEWS FOR ME!! Gail called me today with the biopsy results; apparently Renninson was trying to get hold of me all day yesterday but I was at an exhibition with the FH. Pretty cool that he wanted to speak to me himself [that would be because I am his Favourite Patient heh heh – love that].

I suppose it must be a treat for Renninson to have good news to share, as I would imagine he has to make a LOT of really difficult phone calls, telling people bad news. Like the call I had from him in December – which, happily, is now the past. Although I still remember exactly how I felt at that moment. A horrible cold empty feeling. Then a mad rush of emotion; mainly fright and worry. Which we lived with until I had the laparoscopy last Monday. Pretty exhausting to be that worried all that time.

But that doesn't matter now, as the result is: ALL CLEAR, NO CANCER! As Renninson said initially; and I believed him, but this additional reassurance is fantastic.

Apparently he did a peritoneal biopsy, and the suspicious thing was 'pieces of fibroadipose tissue'. Well. Bloody fibroadipose [fibroadipose: fi·bro·ad·i·pose (fī'brō-ād'ə-pōs') adj.Relating to or containing both fibrous and fatty structures.] tissue should just stop with it's BS of looking weird! In fact, it could fuck right off would be good!! Anyway [calm calm] - the biopsy report states: 'pieces of fibroadipose tissue without malignancy'. WITHOUT MALIGNANCY – blessed words for any cancery type.

This is some of that fibroadipose tissue. Looks like a party animal for sure. I am seeing far too much of my innards recently.

I feel so lucky – it COULD have been a recurrence [and my life would have been completely different]; the odd thing is that because I was diagnosed almost exactly 2 years ago in February, and because everything happened again in February [the surgery, results etc], I feel almost 'undiagnosed'. Hard to explain, [and silly superstition] but as ovarian cancer is most likely to recur within the first 2 years, I was almost resigned to a recurrence. And hated February. How stupid am I?

We are just so pleased - we have gone WILD and we're having pizza and wine to celebrate - the FH trundled off to get it :o) And we have a big fire and life is good! Now just to heal properly [still have a belly full of stitches] and get a job!

wahahaha!!

Oh yes – I had to cancel the mammogram last Friday – driving to the RD&E for a procedure TWICE in one week would have just been too much for my teeny brain – but I already have another appointment for April 30th. Efficient eh? But I'll have to change that too, as I have the Target Ovarian Cancer Roadshow! Such a busy little bee…

update part 02

So you'll remember me nattering on about the constant pain in my left side. Which we thought was a 'backed up' bowel. Well, as Renninson was going in there anyway, he said he'd have a look to see if he could sort that out. The main worry was that due to existing scar tissue, he wouldn't be able to see anything and we might have to resort to open surgery again. Noooo!

But luckily, he [report wording] "had a good view of the pelvis". Yay – I am so glad. Being filled up with air for no good reason would have been a tad peevish. It turned out to be an adhesion causing a 'loaded left colon, adherent across the anterior pelvis and to the right pelvic side wall'.

Here's a picture of the bowel being pushed against the wall of my pelvis by a revolting looking adhesion. Looks rather throttled – Renninson said it was causing what amounts to a kink in my bowel, plus it was stuck to the pelvic wall.

Here it is after the adhesion has been cut away. No wonder it hurt so much.

The rest of the report went so: "Normal peritoneum across rest of abdomen" [this is a GOOD thing!]. And this is the interesting bit: "Small bowel loop adherent to RIGHT pelvic side wall at the site of the Abnormality on the Scan. No peritoneal abnormality below adhesions." So the Abnormality was also caused by an adhesion! Ha!! And double ha!

This is that bit. The Suspicious Object.

So he divided all the adhesions, mobilised the bowel and freed the small loop from the right wall of my pelvis. Then he took a peritoneal biopsy from the site of the Abnormality. Which we shall hear about in a few weeks when I have my oncologists appointment.

Apparently I have dissolvable stitches and GLUE holding me together at the moment. Hmm. No-one actually told me when I can take the dressings off.

Interestingly, as I was leaving I was told by the ward nurse that I could have a shower as the dressings are waterproof. They don't look very waterproof to me, and as that same nurse told me I would bleed heavily for two weeks due to the blue dye they inserted into my uterus…well, I don't actually have much faith in her at all. I don't HAVE a uterus!

And good job I knew about the blue dye BEFORE I went in [thanks www] or I would have had a heart attack when I went to the toilet after the surgery. So today I managed a bath without getting my dressings wet, as I was covered in iodine and blood. Yuck! Too delirious to risk it last night, and it took ages as I was worried about falling unconscious in the water - but I feel much better now.

This same nurse was a right grump, and as I had been there longer than her, was more tired than her, had just had surgery and wanted some sensible answers, she's quite lucky I didn't batter her with a bedpan.

But at the end of the day, what a brilliant result. Once the biopsy confirms that it isn't cancer at all, then we will seriously celebrate.

I don't think I've ever been so stressed as the last few weeks. So glad THAT'S over. Now just to heal up and oh, Friday I have a mammogram! Hahaha – never ends…

the long week

Image copyright Kisaru

I am sure I've never endured such a long week. When I am on holiday they definitely don't last this long! Why's that then?

Then after Monday's laparoscopy, it'll be the next WAIT for the biopsy results. The uncertainty is doing my head in. I am incapable of rational thought. I can't DO anything. And the things I do get done are very slipshod; it's as if all I am actually capable of is waiting. That's ridiculous. But all the same, it's true. I feel like my head is full of mayhem. I have taken to reading a lot. Trying to accomplish something, even if it's just finishing a book. And not thinking too much. But thinking a LOT.

My feet are always freezing because I still can't wear shoes. I need to clean the house and go grocery shopping. But I am worried about catching a cold from some germy tyke whilst I am about it. Perhaps I should wear one of those white mask things? That would go down well at the supermarket heh heh. Or an oxygen tank. A diving suit!

Perhaps I'll just sit in front of the washing machine and watch the clothes going around – at least THEY will be doing something! Maybe whilst wearing the diving suit.  What am I even doing up? I should have stayed in bed.

Bah.

the procedure

I am writing this post mainly for my friends in Portugal. The translation of certain medical terms is complicated, and I really want them [you! I know you're reading this girls :o)] to know exactly what is happening / going to happen.

I keep getting emails from them, worried and confused as to what precisely is going to happen to me. Oh they make me feel like a Rock Star!

So.

Step 1:

The pre-op. This is when they ask you all about how you are NOW. Usually you have to report to the hospital for this, but as Renninson [my surgeon] is away on his holidays, this is not possible. So what will happen is this; a triage nurse will call me and run through what she can by phone. Everything else [blood tests etc] will be done on the morning of the surgery. This is a good thing, as the RD&E is full of the vomiting bug! I really do not want to be there if I don't need to.

Step 2:

The surgery is scheduled for the 1^st February. It is to be a laparoscopy. Renninson will try to take a sample of the 'thickening' they found on the original CT scan. This could be complicated due to the scar tissue I already have. The original hysterectomy, oophorectomy and Salpingo-oophorectomy was a massive surgery, and caused a lot of chaos in my abdomen. There is a LOT of scar tissue in there. He may not be able to get past/through it to the site of the problem. IF he can't, I will have to have another type of surgery – the same as I had when I had the original cancer removed. I DO hope not, as that scar has just healed well, and I do not wish to do the 'sardine tin' thing again…i.e.: chopped open from navel to pubic bone.

So, I am hoping he can get the sample of the 'thing' with the laparoscopy.

Here is a picture of the laparoscopy:

Looks like metal chopsticks!!

Step 3:

The biopsy. Once they have a sample of the 'thing' they will core biopsy it, and then we will know exactly what it is. 

After the laparoscopy, we will then simply await the result of the biopsy. Hoping it is scar tissue and not a recurrence of the hideous ovarian cancer. Keep your fingers crossed girls!

enough with this waiting now!

Every morning, the FH brings me a coffee in bed. I may have mentioned this before. It's my treat. Every single day. Without fail. It's one of those things that is so delightful that I never wake up without thinking 'yay'! I think if I woke up and the coffee wasn't there I would think he'd died!

So. What? Ah yes. This morning was a little different. The FH was in a state of High Dudgeon. Unusual for him. Usually he is very calm. Turns out he was rather peeved [this is an understatement!]  because I STILL haven't had  a letter from Renninson to tell me when my pre-op appointment is, nor when my surgery is. Hmm. A husband who is stressed and worried is not a good thing. Action stations! I am not sure why, but since Tuesday I have been quite chilled about the 'Situation'.

Actually, I have been strangely calm. I am not sure if this is a good thing or not. I feel almost disassociated. At first I was shocked, upset and afraid. Oh – I was also quite furious at the thought of having to go through chemo blah de blah again. I think it took me 3 weeks to get my head around it. Christmas was a blur. But this week I came 'back'.  Odd. But there you go. Nothing much odder than a cancery type I think – well, apart from Ugli Fruit.

so, this afternoon I rang my Clinical Nurse, Gail [she works for my surgeon, Mr Renninson] about the surgery and pre-operative appointment.

First, the GREAT NEWS is that they found NO other strange things on the MRI scan I had last week. The MRI scan is a lot more detailed than the CT scan I had in December, and I was a little worried that they might find ‘something’ somewhere else. Lungs, liver...whatever - you can imagine. But we are still with just that one little thing. So that is excellent!! woop woop!

Second, I will have the majority of the pre-op appointment by phone, done by a triage nurse. So I don’t have to go into the hospital for that. Also excellent.

Lastly, the surgery is scheduled for the 1^st February. Which is only 2 weeks away. It could be delayed, but at least I am in the system. All good news so far. The FH is looking far more chipper, and that works for me.

I know I am a bit weird right now [my communication skills appear to have disappeared], but I am quite cheerful, pretty positive and hoping for scar tissue. Sorry – no amusing picture.

waiting in the New Year

I was talking to a good friend last week. An old old friend – and you know what? It was one of the easiest conversations I have had in a while that included the word cancer. NOT the 'Big C' thank you. Fucking cancer. Hate it. She has fibroids that cause her horrendous pain, so we had that "lets laugh about this" conversation. Both of us in hysterics about our situations, but both knowing quite well that it isn't that funny.

Anyway – I am in a strange state. Living life as normal, but not. Not actually being very normal. But…being really normal! I am a genius. I can look normal, whilst all the time feeling completely INSANE. I am having horrible dreams/nightmares. I am struggling to attack the work situation properly because I am 'waiting'.

My FH and my darling grand daughter have left the building so to speak. I miss grand daughter already. Here we are on New Years Day – miraculously sunny! But freezing none the less. Love that coat!!

I am just Waiting. Waiting for the pre-op appointment. Waiting for the laparoscopy, which I am dreading. More scars, more pain. Waiting for the biopsy report. Just WAITING  to get on with my life. Waiting to hear if I have a recurrence. Or not. I just need to KNOW what's going on!

But; slight problem at our hospital – the RD&E has 8 wards closed because of the vomiting bug. They are cancelling all non-urgent surgery and everything is delayed.

So I think the waiting will be rather longer than I expected. The day I came home from the MRI scan, I was feeling awful – I slept all afternoon. The MRI seemed to cause pain in my abdomen? Maybe psychological? And the shot I had to relax the bowels? Maybe has side effects? Who knows. The next day, I was vomiting and had to hold onto the walls to walk, as I felt completely delirious. It was horrible, every time I turned my head, the world tipped over. Ugh. I just drank gallons of water and went back to bed. Seemed to work, as I am fine now.

Well…wait wait. Hopefully I'll have a letter next week with a date for my pre-op. In the meantime I am still looking for work, sending off zillions of CV's and hoping for the best. But I am confused. Too many things to deal with – it makes me unable to deal with anything. That sounds so stupid, but I just don't know where to start some days.

Must make a list I think. That may help.