update

hmm – I haven't felt like blogging for a bit. And even if I had, the Christmas season has been a busy one, keeping me away from the pc – good. Actually I hate/love my pc – it keeps me in touch with everyone, but it also keeps a lot of tedious people in touch with me. Well, not for much longer – being unemployed means I can delete a lot of idiots!!

I have been and I still am, totally exhausted. Not a good thing. In fact, a scary thing, as when I asked Dr Hong [the Onc] about recurrence a long time ago [last year? is that a long time? yes. for me], she said it would likely be the same symptoms I had initially…tiredness, swollen tummy. And I am TIRED. So tired I can almost scream.So tired I can almost cry. [And I have cried – I hate crying. It sucks.] But it doesn't mean sleepy. It means burning eyes, an exhausted body, leaden limbs…the left side of my face where it is affected by the synkinesis from the Bells palsy feels dreadful – I sometimes struggle to speak clearly. And I hate that too. But you know what? I used to think that was the worst of my problems. I used to dream that I would get my face 'fixed' and that afterward, everything would be ok. Oh, if I had only known what was to come…but the mind is as active as ever [hence the blog post!]

So, I am pissed off. I don't need this. I have already fought this battle. I am not …I don't know. I am not what? Prepared to fight it again?? Of course I have to. But I don't want to. Renninson called me and we had a meeting the next day, where he explained that he had found 'something' on the scan.

It's a 50/50 chance between cancer [recurrence] and scar tissue. I am all for scar tissue [doh]. He said the 'thickening' is where he had to 'tear the tumour' away from stuff it had grown onto. Ugh. Tear??

I went to Stoke this weekend. To see my 85 year old father-in-law. I went to my Mum and Dad's last week to see them. Both visits were so nice. I am very lucky. I have family who want to help me. But it's hard to allow. I can't help feeling that I am spreading a bloody plague of misery here. I don't want to do that. The thought makes me furious. Typing it makes me furious. I am pretty furious altogether this evening. So. Bear with me. Or stop reading now. I am in bitching mode. You have been warned.

Christmas was fun – amazingly enough. We got back from a 5 hour drive [which should have taken 3 hours - uff] to Stoke, and the 'Letter' was there. My MRI appointment for next Wednesday. The 6th January. God, it made me feel sick, but at the same time, it was the best letter to get.

Right now I have my granddaughter to stay – poor little thing has an middle ear infection – well, it's keeping me occupied with her instead of me, so maybe it's a gift [but it doesn't feel like one when you have a 5 year old crying from ear ache at 3.00 in the morning!]. When I am at the pc, she is here with her arms around my neck. When we do things, she is always around me. It's amazing – I have this beautiful child in my life, merely by luck.

I am hoping for more of that kind of luck!

happy Christmas! natal feliz! joyeux noël

Happy Christmas everyone – thank you all so much for the comments, advice, support and amusing cracks over the year.

I know that my 2008 and 2009 and been pretty [well…um…] – exhausting? Interesting? Sometimes completely revolting [think of the hair colour here!].

Well, third time lucky and 2010 is going to be a cracker for all of us.

All the best for the New year, wishing you all health, happiness and a bit of wealth wouldn't go amiss! Have a great holiday!

With lots of love to everyone, from me and the FH

xxx

the Times

I think the Times article is in tomorrow. We will check on-line here and see in the morning. After our nice lunch today, a photographer chap came round and took a billion pics for the Times…I had face ache afterwards from smiling. It was a good day actually – we had fun. After expecting it to be ghastly, we were quite chuffed. It could have been a lot worse.

Here you can see the chaos I have wreaked on my hair. The ChestNUT colour – oops…. Aj took pics of the chap taking pics. He moved half the house around, but he was a lovely fellow, and it was quite fun.

Then I was on the phone for an hour to Lins, for a quick catch up [we do this about 4 times a year and it's always hilarious] then I collapsed on the sofa. All the worrying last night left me sleepless, and now I am shattered.

 

Theo is on his knees here [below] – how he avoided cracking his skull on our low door lintels I shall never know. He also narrowly avoided landing on his butt on the patio, as it is frozen into a mini ice rink! Note Facebook page in the background, as that is what the article is about I think. It is written by Murad Ahmed, who interviewed me by phone last week.

Networking on FB, and how fab FB is…but also with some Ovarian Cancer Awareness added, or they will be in trouble ;o)

Tomorrow off to Mum and Dad's for lunch – woop!

update

I get such good service at my hospital. Actually I just learned today [from John Renninson] that they have been named a Centre of Excellence for Gynaecological Cancer. So, I am very glad I live in Exeter!

Right – what happened. We had a bacon and eggs and toast and coffee in order to be fortified for the meeting. I felt like going in my dressing gown. But as it's 3° out I thought better of it.

We met Renninson, who had come in specifically to see me and have a chat about the Scary Scan Thing. I am not sure why, but all the specialists were wearing striped shirts and striped pants. One had on a bright pink waistcoat and looked very designery…with a little goatee no less. Very festive fellows.

Renninson said that they can see something on the scan, what appears to be a 'thickening' where they had to [his words] "rip the tumour off the things it was growing onto". Ugh. So it could be scar tissue. Or it could be a recurrence of the cancer. But his odds were 50/50, and that's really good coming from him, as he always errs on the side of  caution. Worst case scenario is that it's a recurrence. Best case is that it is scar tissue.

The plan is that in January I will go for another MRI scan. He discussed doing a PET scan with me thanks Nat!], and isn't keen on doing that, as he said it shows up 'hot spots' but it still wouldn't tell him for sure whether or not it is cancer or scarring. So, a pointless thing to do in my case. And I would rather have less scans if possible, so that's ok by me.

So, the MRI; then we will have a pre-op meeting [where I get to see all the scans, yippee], compare the scans, discuss what's going on and then he is going to do a laparoscopy. Yay – 'minimal invasion' sounds good to me. He will put the laparoscope in through my belly button, then another one [or two, depending on how he gets on] lower down in the abdomen. The difficulty he may have apparently is because I have had such major surgery, there may be a lot of scar tissue getting in the way. Lets hope not.

He will then take a sample of whatever it is [the SCAR TISSUE!!] for a biopsy. So, if all goes according to plan and no bowels get punctured etc. I will be in and out in one day. Then we will know what it is [scar tissue!!] shortly after. Renninson was quite nonchalant, and said he doesn't know what it is, but if [worst case] it's a recurrence, WE will deal with it. Cool.

We will. I think I startled Renninson rather, as I gave him a big kiss. Well, he is saving my life :o)

We both felt MUCH better after the meeting, raced off and did a fun last minute Christmas shop, then went for tapas and wine at La Tasca. Then we came home and I had a zillion photos taken by the Times photographer. I think it's going to be in tomorrows paper!

suspicious CT scan results

Hmm. Last year, cancer. This year, Aj has lumps in his abdomen which frightened me half to death  [thankfully nothing bad], I get over cancer and grow my hair back, then no job. Pretty bad.

Oh and the scan has something 'suspicious' on it. On the right, where the initial cancer was. A Suspicious Thing. Oh joy. Bad things always come in threes. Obviously losing my job wasn't quite 'bad' enough.

John Renninson called me today and very kindly told me that I need to get my ass down to the RD&E tomorrow morning at 10.00 to discuss what options we have regarding finding out precisely 'what' the Suspicious Thing is. I asked him what he THOUGHT it was and he said he doesn't want to have this conversation by phone, better to come in and discuss it, but it may be a recurrence. But he's not sure. Well, he should be sure – he's my expert! But he's not. Sure, that is.

Aj's face went white when I told him, and took all afternoon to get back to it's normal colour. My poor husband.

So I am saving my Nervous Breakdown for after the procedure that will see what the hell it is. Hopefully it's something fun like a scar tissue, a fatty lump or a chip that went down the wrong way. Hopefully I won't have to be chopped open like a sardine tin once again.

I did send out 2 C.V's today. And I coloured my hair [which is now an interesting shade of 'WHAT the hell kind of brown is that'??]. At least I achieved something. All be it looking rather like a short demented red haired person. It said Chestnut on the box! I think the CHEST part was the error…

And I have been thinking about how tired I have been lately. Again. Exhausted and wrung out. The travelling to Portugal was half killing me. And I did have a bad feeling about this scan, even though my CA 125 has remained low. Renninson did tell me not to rely on it.

But, on a more amusing note, tomorrow afternoon the Times are sending a photographer to take "cheerful, happy" photos of me for their Christmas Special [with the NUT coloured hair]. A cheerful, happy, cancery type talking on Facebook. Hmm…interesting to say the least. Not what I'd call Christmassy!!

Update tomorrow. Now, wine.

today's inventiveness

Now that we're on holiday, we can do some of the stuff we've been MEANING to do for ages. We wrote all the Christmas cards…late as ever, but better late than never. The FH trundled off out into the Big Freeze and posted them all.

I have finished my C.V and applied for a few jobs, but I don't expect to hear anything until the new year, so I am leaving the rest until then. Nobody cares about jobs right now, they just want to be on their hols.

Here's today's excitement [for me anyway!]. I discovered how to take a music track and make a little film! It is pretty basic, but as a first shot at it, I'm quite chuffed…I seem to have all sorts of interesting things on my computer that I didn't realise were there. And I wrote the copy for the advert too – another first. Quite fun.

So we've slapped it onto the Facebook Page, and the website. Hopefully lots of peeps will see it and race down to the shop in January and BUY lots of tiles!

Now back to the drawing board to get my portfolio sorted out…

looking for work

today is the first day of my Christmas holiday, and I was bumbling about the internet looking for jobs, and I came across this on Libby's Hope. I have just emailed Louise at Ovacome to see if we have anything similar here in the UK.

Looking for work is odd – it is both liberating and frightening. Liberating in that I am hoping to find something really creative and challenging, where I will learn new things, meet new people and also be able to share what I know. Frightening in that I don't really want to have to meet a whole lot of new people. Why, I don't know, as I talk to lots of strangers all the time, and none of them have bitten me yet! Probably because people get arrested for biting one another in the UK.

If I go only for freelance work, nobody needs to know I had cancer last year. All my cancery stuff goes here on the blog, and on the thread with all my darling girls on FB. If I look for full time work, it's a different story. I will have to complete one of those forms that I used to tick all the 'NO' boxes on…now I will be ticking the 'YES' box, and no doubt have to write a saga about having had about cancer. Although Dr Bradley said employers are far more concerned about people with bad backs than people who've had cancer. He suggested I offer to be on a trial period, so that [his words] "they can be sure I am not about to drop dead every three days". I love my GP – he does make me laugh.

My confidence is at an all time low. I have 3 million things to do, so of course I have done nothing. I really need to get a grip. Fast.

I am hoping that once I have the scan results, my mind will clear and I will stop wandering about in this 'WTF?' haze. I am sure the BH feels the same – I am probably a total pain in the butt right now.

I think tomorrow I will clean the entire house. Or wash the car. or sleep all day. Or whatever.

This may be of use to all you girls in the US.

I hate [really hate!] waiting

well, today I got a tad peeved with the 'waiting' scenario, so I called my surgeons Clinical Nurse Specialist, Gail. It's always an answer machine, but they ALWAYS call back the same day. Bless 'em.  So I left a message basically saying "aaargh gimme my results".

An hour later Jackie called me [there are two, Jackie and Gail] to say that Mr Renninson would be looking at my films on Tuesday. I know this is their big 'meeting' day, from old experience. I was just hoping they had stuffed me into THIS Tuesdays big hanna hanna. Unfortunately they had not. Jackie went on to say that she could not access the radiologists files, so she couldn't give me any information, and that, yes, it would be better to wait for Renninson's prognosis. But the way she said it made me nervous. But then again, anything could add to my nervousness right now, so what can you do?

Fuck!

What do they think? It's been TEN days! I had the scan last Tuesday and then just forgot the damn thing?? Trundled on with my life with nary a care? Just became Mrs. Blasé? Well, I did not. I have been hanging on a thread every time the post arrives. Every time the phone rings. Aaargh! Merde, this last few weeks have completely sucked. First, no contract, next the exploding toilet [yes, yes I will tell you about THAT in due course], then this. Bugger. And that's putting it mildly!

So. Until Tuesday. In the meantime I shall likely be impossible. Sorry. Not.

porn

message to all Japanese and Chinese porn stars – no, I won't publish your comments, nor link to your web sites, not ever. So stop trying would you? Thanks ever so!

Christmas done and dusted!

We have an odd tradition in our house. We have Christmas early every year. This is because the girls have chaotic lives and we usually escape to the Gambia. But not this year, sadly. Jen works for the police, so she works Christmas day. Vick has The Granddaughter, who needs to see her dad etc on Christmas day. So we have our own Day, early. It's rather nice, everyone arrives in a big jumble, and the house is instantly a complete chaos of bags, people, toys and noise. I love it. Six year olds seem to Take Over The Universe. Jen simply takes over the fireplace like a little cat. She will not be budged other than to race about the kitchen with Vicky doing dishes or making cups of tea for the masses.

First we have some Granddaughter presents. Granddaughter wakes us all up rather politely. We scramble for breakfast toast and coffee [the coffee is for me]. Everyone goes out in the cold for a walk and I beat the dinner into subservience and lay the table while they're gone. We have mini sparklers!

Then we have the Traditional Dinner; well, OUR traditional dinner. I think if I changed it now everyone would be horrified. An Hors d'œuvre of some description. This year we had won ton, last year, soup. The usual Roast duck stuffed with ginger and things, and roast pork [turkey is a bit naff], Delia style roast spuds, all the vegetables etc etc. I could do with another oven to be honest. Our little kitchen is literally bursting at the seams [and my hair standing on end!] by the time I am finished cooking the meal. Then dessert . Uff.

Then we have more presents [which now include the grown ups] and everyone collapses. This year was a little simpler than usual. I like to go over the top with presents – there's nothing nicer than choosing a gift and then wrapping it up extravagantly, just to see the expression on the face of the person who opens it. But we pared it right down to one gift each this year [apart from Granddaughter]. It didn't seem to make much difference – everyone seemed delighted and we had a lovely day. Well, the toilet broke and attacked Vick, but that's another story! Then everyone trooped off to their normal lives and we collapsed.

I had an exhaustion attack afterwards though – I was trying to remember if it happened last year, but I found I couldn't remember last year. That sucks. But they are few and far between now, so I can't complain. Well, just a little!

Here's Granddaughter with her Gruffalo plate…

in the meantime….

we went to Brighton the weekend before last. Our friends have an amazing apartment there. I didn't really know if we should go or not – we are such a miserable pair of so-and-so's at the moment. A: it was the weekend before my CT scan appointment, and B: I'd just discovered I am to be unemployed as of December 31st, so I wasn't sure where my head would be at [in fact I was so worried about my 'head' that I went to see the GP who gave me some meds 'just in case'. I felt as if something had come loose in my brain]. I am already worrying about finances. I didn't think there was room left in my head for any more worries, but it seems that there is infinite space for that! No room for remembering things, but plenty for  stupid niggles. Annoying.

Anyway, after a small discussion, we went – and we were so glad we did! Jack and Bill gave us a lovely weekend. It was like a mini holiday – they really spoilt us half to death. It was such a relief to be away from the house, such a delight to look out the window over the Lawns directly onto the ocean. We just chilled out the whole weekend; the most energetic thing we did was to have a wander round the Lanes. Sunday was sunny. Monday Aj and I collapsed and Jacket and Bill went off and did stuff. I don't think I've ever spent an entire day doing NOTHING – not that I remember. It was strange, but we patently needed it. We are both exhausted. The waves were 20 feet high. The view was spectacular, even in the pouring rain.

And Bill cooked breakfast every morning for us [my favourite thing!] and Jacket was a wonderful hostess. We came home lovely and chilled out. What would we do without friends that just DO stuff for us? We'd be much poorer.

Here's the Room with a View. Amazing to just stand on the veranda and look at the sea.

Then we got home. Back to reality. Bang. Next thing: the Christmas dinner! And I am STILL waiting to hear about the CT scan…bah.

Meno A Kwena Tented Camp

Look! This is my friend David in Botswana, being interviewed about his camp. The sound is a little faint, so turn up your volume.

See full details of the Meno A Kwena Tented Camp & Safaris here, and here for the Boteti Diaries.

Amazing place! And David has done amazing conservation work there, with his safari guests directly contributing to wildlife conservation and rural community involvement.  Facebook types can join his group here, lots of great photos going on.

We really HAVE to get over there one day.

the 2nd CT scan

Aaaargh!! What  a day! 7.00 – up and at 'em, nerves. 8.00 – a pint of water with some gastrografin in it. 9.46; email from Cinca. Stop eating at 10.45. 10.31, 10.37; email from Cinca. Another pint of gastrografin diluted in water at 12.00. It tastes DISGUSTING. 11.44; email from Cinca. But apparently it makes the bowel appear much clearer on the scan. So, bring it on. Well, in hindsight, it was ok – but while I was drinking it – er, no! Yuck. As well as making the bowel beautifully visible on the scan, it also 'disturbs' it…ugh. Running up and down stairs a lot.

Arrived at the RD&E early, and [shock horror] I went in straight away! This is not normal – I put 3 hours on my parking ticket just in case [£3.00]! But I was in and out within one hour. The chap whom I gave my parking ticket to when I left was delighted.

14:30. Logged in at reception. Told the woman I was starving and it would be excellent if she hurried it up. She obviously took me at my word. Into the little changing booth, off with the clobber – all jewellery has to be removed. Anything metallic is a no no. Everything goes into a shopping basket which you then haul about everywhere. I absolutely HATE taking off my wedding ring.

Into the HIDEOUS hospital gown. WHY would anyone design a gown you have to walk about in public in, so that your ass hangs out the back? Fired. Then another revolting drink of something. Not quite sure what, but the chap in HIS hideous gown next to me raced me to drink it [yes, in hospital everyone goes a bit mad]. I was grizzling and pulling faces. So he decided I should just suck it up. And I did. He went first. I told him to hurry up. He did.

Then in went the catheter at my elbow. I was well chuffed! No searching for veins in my right arm any more. They appear to have recovered. yay! But it still hurt. 'A small scratch'? ha. A 'STAB' is more like it. Bloody nurse sense of humour….Then an explanation of the whole thing – I had a CT scan last year, but as it was an 'emergency' scan last time, no-one explained anything – they just jammed me into the machine, did what needed to be done,  and threw me out the other side. This was much calmer, and it's nice to know what to expect. The catheter is for the last lot of 'stuff' that shows everything up well on the scan.

Whatever it is they inject into the catheter – well. It's weird! It's a contrast material, introduced to the bloodstream during the procedure. But it makes you all hot in strange places, and the funniest is that it makes you feel like you have wet your pants! The first time round, this is awful – the 2nd, not awful but still a tad startling! Slightly chuckalicious, as you know it's coming?

Then – hold your breath. In the machine, out again. Inject the contrast material [feel totally mad]…hold your breath…in and out blah de blah. Then rip out the catheter and off you go. With a great lump of that bloody awful sticky tape they attach the bandage with..I don't like it. It gives me blistery things. I rip THAT off poste haste. And it hurts! grr. But better than all that blood going everywhere. Lots of blood jumps out of my veins after they remove the catheter. It's pretty gross.

Straight to the nearest food! Having been starved all day, plus the contrast material makes the mouth taste dreadful, a spicy pork pie was just the thing. Then home again home again jiggety jig…

Now just to wait for the results. Oh, and find a job…what fun!!

here's the CT scan machine thing…that would be me, except they didn't put a large brown blanket over me. I am rather glad they didn't, as it would have hindered my escape! Never a good thing ;o) Not to mention it makes the person look like a corpse. Not quite up to looking like that quite yet thanks!                                

what a bloody week

I haven't blogged for what feels like ages. Life has been rather 'exciting' yet again. I do so love boring.  When no momentous happenings happen. It's a lot less stressful than 'exciting'. But, hey ho, exciting it has been.

I was informed last week, exactly 30 days before my contract is due to expire, that it is not to be renewed. This is a norm, as a freelancer, one expects the contract to end at some point. And especially now, with money being so tight etc. I am expensive. Budgets are constricted. But it still sucks.

But this contract has been a 'special' if you will. It would have been ten years next April. During that time I have been travelling back and forth to Portugal on a monthly basis. Sometimes every two weeks for a fortnight, sometimes longer spells in between. Sometimes, when we had exhibitions etc that made it necessary, I have stayed there for 3 weeks at a time. I am very lucky to have such an understanding husband, as that amount of time away from home is not your normal lifestyle.

I had to go over the very minute I was able after I finished my chemo last year. With no hair – it was horrible. But I've never minded; and I've never refused to go, knowing it was necessary at the time. We were a small unit, and needs must. Plus everyone was so good to me. I developed a sort of loyalty to the company.

Anyway, the contract has expired. Sad, but not The End of The World. I will miss my friends in Portugal SO much. Last year, during the Cancer Attack, they were especially amazing. Patty and Clara both came over here to see me, cook for me, to check on Aj; just to make sure I was still in one piece. The Portuguese are a very special people – they have old style values…they value friendship very highly. And they really CARE.

This is Patty and Clara – cooking bacalhau on separate occasions in our kitchen. Pat came over almost directly after the surgery and went with me to the oncologists appointment where I discovered, yes, I really WOULD be losing my hair. THAT was a ghastly day.

I had so much support from the girls I know there. Even the ones who don't 'think' they were very supportive. ;o) But they were – in their own way. Unfortunately I didn't have the opportunity to say goodbye to anyone – perhaps that's best, as it would have been very emotional. Better to not say goodbye, but just wait for the next hello. It was a little bit callous to send a 3 line email informing me though. Ten years seems to merit a little more? But perhaps it's me…

"Don't be dismayed at good-byes. A farewell is necessary before you can meet again. And meeting again, after moments or lifetimes, is certain for those who are friends." ~ Richard Bach

In the meantime, I need to find work here in the UK. Hmm – difficult, as I have worked out of the country for so long – no contacts. But I will deal with that as and when.

All week I have been dreading the CT scan – that seems more important than the job right now, as that will let me know IF the cancer has gone, or IF it has come back. Actually, it's a piece of luck that my contract didn't end last year – job hunting with no hair would have been rather challenging to say the least!

So you can well imagine – my stress levels have been sky high…and so have Aj's. We need a holiday!