Thursday, 31 December 2009

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!

Thursday, 24 December 2009

happy Christmas! natal feliz! joyeux noël

christmas

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

Wednesday, 23 December 2009

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.

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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!

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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!

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Tuesday, 22 December 2009

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.

Monday, 21 December 2009

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…

Saturday, 19 December 2009

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.

Friday, 18 December 2009

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…

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Thursday, 17 December 2009

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.

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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.

Tuesday, 15 December 2009

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.

Wednesday, 9 December 2009

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!                                 46_CT_Scan

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.

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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!

Saturday, 28 November 2009

thought for the weekend

this is a great version of a great song…I never actually search for music so I am not sure what it is about Nina Simone, but her music keeps popping into my life just when I need it. Sort of a 'wake up and remember what's important' kind of appearances.

Have a great weekend!

"I got life, and I'm going to keep it as long as i want it, I got life....."

Nina Simone

Thursday, 26 November 2009

when NICE is NOT nice

This morning I had fabulous news. My friend Nat, who is still battling ovarian cancer, has had the best news today. Thanks to Avastin, her tumours are FINALLY shrinking, and her CA 125 is the lowest it has been since she started her head to head with this hideous disease. Yes, she has a few side effects, but they are only due to the treatment itself and will stop when the treatment ends.

I think this will be the best Thanksgiving Nat has ever had! It certainly made my day. Please see Nat's blog here. It makes for interesting reading.

Having seen this result, and knowing what a difference this drug has made to my friend, it astounds me that we [and I mean ANY of us] can actually put a price on someone's life and deny them a chance of survival. How nauseating is that? And what does it say about society now? I am a bit startled by this article. And I notice they only say that it can be used for bowel cancer. No mention of the effects on ovarian cancer.

Then again, I think it's only the UK that actually HAS an almost free state healthcare service? I suppose we can't have everything. In the States they have cutting edge technology with regard to drugs and research, here we have to wait. But in the US they have to pay or die, here we get everything free.

So sad we can't have both. Cutting edge technology AND free medical healthcare for everyone. But then if it was a perfect world, no-one would have cancer in the first place would they?

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New hope over bowel cancer drug  (UKPA) – 14 hours ago

"Pharmaceutical giant Roche is hoping to strike a deal with a health watchdog after experts rejected a bowel cancer drug for use on the NHS.

Avastin (bevacizumab), which costs about £1,800 a month, has been shown to shrink tumours in 78% of patients when it is added to chemotherapy drugs capecitabine and oxaliplatin. This could make them eligible for surgery although the drug is not a cure.

Avastin is suitable for patients with advanced (metastatic) bowel cancer, where the disease has spread around the body, and could potentially extend the lives of some 6,000 people a year in the UK.

Roche offered a patient access scheme to reduce the cost of Avastin, which would have seen a cap on its cost at 12 months and free oxaliplatin. Roche said this would have reduced the price to £36,000 per quality adjusted life year (QALY), above the £30,000 threshold used by the National Institute for Health and Clinical Excellence (Nice) which rejected the drug in a draft recommendation.

In a statement, Roche said it was "confident" it could continue to work with Nice to make Avastin available.

"The UK is now virtually the only country in the developed world not to provide Avastin for bowel cancer through the state healthcare service," the statement said.

John Melville, general manager at Roche UK, said: "We are in an unfortunate passport prescribing situation with Avastin whereby patients in Australia, Canada and most of Europe gain access, but patients in the UK, Latvia and Poland don't."

In clinical trials, adding Avastin to oxaliplatin-based chemotherapy typically increased survival to 21.3 months from 19.9 months with chemotherapy."

Sunday, 22 November 2009

Sunday Sunday…a Wellie day

the weather here is completely repulsive! I say this because this morning it was sunny and dry – perfect gardening weather, even though it's cold. But this evening we appear to have a Force 10 gale!! [+ rain!!] Whilst it was sunny I dug up a great big Phlox for my neighbour, George. I have three massive ones that I had from my Mum, as she doesn't like them, so we dug them all up out of her garden and relocated them in ours. I love them! They flower for ages, and if you deadhead them they flower again.

But George the Neighbour was concerned that I only had pink ones. He took it upon himself to split one of his red ones and bring me half. Then he bought me a purple one at the Sunday market. So the least I could do was dig up one of the pink ones and give it to him. And this morning was perfect for digging. After much sweeping of leaves mind you. In Wellingtons. The Wisteria is a plague in the Autumn – leaves everywhere, and not in a very organised fashion either – it takes weeks to drop all of them. The driveway was a nightmare, getting out of the car and wading through a metre deep of the beastly things. So lots of sweeping was in order. And I don't like sweeping – it does my stomach in. But probably it's good for me, so I do it anyway. Plus there's the danger of drowning in leaves if I don't!

phlox

Right now I am listening to the howling wind and pouring rain. We have the wood burner on the go, so the house is lovely and warm – sometimes cold  days can be wonderful. Once you are snuggled up on the sofa by the fire anyway!

Every time I do things in the garden now, I remember this time last year, looking out of my office window and wondering if I'd ever have the energy to dig things up again. The body is a wonderful thing – only one year ago now, I couldn't manage to open a jar top never mind lift and wield a garden fork. Now I am back to normal. Almost – I get exhausted more easily, but then again, I am a bit older right? Plus it takes ages to get over being blasted by chemo. And I have been battered half to death by cancer first, then chemo second.

So, I feel I am doing really well. I feel GOOD as James Brown said…Whoa! I feel nice, like sugar and spice!!

Saturday, 21 November 2009

more photos…

Aj and I waiting…

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Lorraine - working

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me, getting sound

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me. going home.

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blogging and the comments

you know what I find amazing about blogging? The 'feed back'. The comments. It's the thing that makes blogging fun – the thing that makes us a big group; the thing that allows us to connect and interconnect. The thing that makes us friends, even though we have never and may never meet one another in 'real life'. This cyber life is amazing – I know [as in 'know'] so many women through my blog. I may never meet them. I would love to. But I don't need to. Not really. They are there for me even though they have never seen me in the flesh.  They remark on my ramblings, they support me when I am going crazy…they laugh at me when I am too serious. They talk to me when I am alone. They ballast me when I am drowning.

Thanks to all the women who comment on my blog. You have no idea how much it means to me.

Cancer is a revolting subject. And yet these women never fail me with their witty / meaningful / heartfelt / mad remarks. You rock girls. And thank you.

yay my scan appointment is here!

alice-with-bottle-2** image is copyright of Disney

And in the meantime, my CT scan appointment has arrived already. That's what's so amazing about the Exeter RD&E – they don't mess about when you have had cancer. They don't make you wait very long for anything, and that is so great, as waiting around for things tends to cause nightmares – even 'day mares' [is there such a thing?] – thinking horrible things that aren't real while you are awake. I think there is such a thing, as I have them. Hoovering the carpet, I am wondering if the cancer has come back on my bowel. Bah.

So the scan is in December – they sent me a little bottle of stuff I have to take, it resembles the 'drink me'  bottle Alice had. An innocuous brown bottle of diminutive stature. But I have been assured by The Girls that it tastes vile. Drinking iodine. Eww. I usually spray it on cuts! Hey ho, I don't care – it apparently makes the intestines and bowel more visible to the scanner. Can't be bad.  Roll on the scan! I still have the pain in my side, so it will be good to see that it's a 'nothing'. I am going to ask to see the actual scan too – that'll be entertaining – seeing your insides in slices? Gotta be good!

frantic week

The day after the check up we went to London to do the interview for SKY real Lives. We were collected by a taxi at 6.00, dropped at Exeter St David's, and took the fast train to Paddington. Another taxi collected us that end, and we shot off to our hotel, where we dumped our bags and promptly made for a pub. London pubs are still 'proper' pubs in the main. None of that cream paint all over the place. Fab.

Here's the pub. It had relief tin ceilings – yay!

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Here's the hotel in Notting Hill. Tiny room but spotless, and the service was exemplary.

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On Thursday we had to be 'on location' [chuckle] at 8.15. Which meant a mad frenzy to get up, organised and have breakfast by 8.00. The taxi text messaged me at 7.00 to say they were on the way, and at 7.30 to say they were outside! Deranged – they had to wait, as Aj had a rather scrummy full English. I had croissant and coffee and went out for a cigarette – met the taxi drivers, who were also having cigarettes. They didn't seem too bothered to wait, so everyone was chilled. We met one of the other women in the programme and her Mum at breakfast, Hazel. She is an amazing woman, and made me feel very lucky to be in the position I am in regarding my cancer. She is battered every day by hers, since she was a young girl.

We all arrived at the house in Notting Hill [amazing house – and amazing CAT!! more about him later!]. We did lots of sitting around waiting, but the Tern TV team really looked after us, we had coffee and whatever we needed, and met the resident expert before we went on. He is super – but I can't tell you who he is. Boo. But I will in due course. Here we are waiting in the kitchen. Hazel is the blondie on the far right. Her mum, Gladys is behind her.

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Went into makeup, which was more fun – I was lucky, and had the [yep, still a secret] interviewers own makeup artist. I wonder if I can buy her?? A ton of makeup later and I looked MUCH better!

Here I am getting painted up.

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The interview itself was quite short, but it was an experience for sure. Isn't it odd that talking about ovarian cancer could be fun? Pretty surreal to say the least. Even more surreal to think that in February I will be on TV. Just because I had cancer.

So, it was interesting and I think we all enjoyed it. Apart from when they showed a clip of Aj talking about me – he was saying all these wonderful things about me, and I had to look away or burst out crying. NOT a good idea. I am so lucky to have a husband who has been so incredibly supportive [and still is] and who it seems, is still in love with me. What more can you ask?

The interview itself was over quite quickly, but it was fun to meet the person who interviewed me – much more down to earth than I would have expected. Rather nice actually!

They have included a picture of the actual tumour in the 'back story' – I have never posted it, as it is repulsive. But apparently that picture may make women think harder and be more aware of this disease. good. I hope so. If even one woman is diagnosed earlier from seeing this picture, this programme, I shall count the time well spent.

So, here it is. Tadaah. Showing some scale – i.e.: the tumour was bigger than my womb. Ugh.

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This is a better picture I think. Getting wired for sound here, with Lorraine and the sound tech.

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Afterwards we went and had lunch at Carluccios, then another taxi back to Paddington, train home, taxi to the house and collapse.

And in the meantime, I have fallen madly in love! With a cat – a Norwegian Forest cat to be precise – here's the one that was at the house – he was so friendly! And so pretty. Of course, fell for Aj straight away! Aj seems to be an animal magnet…

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DSC_0028We now want to get two, but can't find a breeder in Devon. We've even chosen the colours already! It's taken me an age to feel confident enough with my health to even consider buying more animals – I still miss my two Persian cats that I had for 15 years. A different breed will be good, as I can't 'replace' my girls, but I CAN get new cats. And I am sure they'll be good for me. Anyone who knows where I can get some NFC kittens, please let me know!?

Tuesday, 17 November 2009

yay – result!

bat

Check up day – what fun [not]. Off to Exeter. Parked near the solicitors…you can only have up to an hour there, so that was perfect.

Wandered into the shops and had a mental aberration in Warehouse. Bought stuff [as you do IF you aren't looking for anything, which I wasn't – well, the shoes apart]. Looked for the shoes.

Well, the shoes were a BIG failure. After racing about Exeter town centre looking for the Kirk Geiger shop [and not finding it], I resorted to the iPhone and looked it up on the www. Oh yes…it was in BRISTOL that I went into that shop…stupid chemo brain. So, no shoes. YET!!

Then Aj rang and said he was home, so I went to pick him up to go with me to the RD&E. Thank goodness I did. The parking was a complete and utter nightmare. Aj dropped me at Force and went to try and park. I dropped the collection box in and got a new one. Everyone seemed very excited by the weight of the box. I also got some Christmas cards. Then went to find the DH. He passed me in the car, waving his arms and legs in hopelessness of ever finding a space. I merrily left him to it and went for a cup of coffee in the waiting room.  WAITING being the operative word! An hour late! Oh well.

Of course, as soon as I got really stressed and raced outside for a cigarette, I was called. Raced back in and assumed the position.

Right – First thing, the CA 125 is 8. Yay. Up 2 from last time but not actually 'up'. Relief there. Although I do understand this is not definitive, it's still a nice little control mechanism for panic.

Next; regarding the pain I have been having. Initially I had a dull pain under my left ribcage, almost straight after the surgery.  That has remained constant. And I don't worry about that. Maybe it's a scalpel or a hat that someone forgot. But for the last few months [since my last check up] I've had a new, more painful pain that runs down my left side just inside the hip bone. The last few weeks it's been going down my leg too. NOT conducive to cheery thoughts. Renninson said it is the large intestine, or bowel, and apparently it's backing up? He can feel it, and shouldn't be able to.

Charming. A 'backed up' bowel? Eww. It seems I need to drink MORE water, and eat MORE fibre. Probably linseed oil. Which I always thought was for cricket bats [all important task of applying Linseed Oil to your bat...don’t forget the toe!]. Renninson thinks not. It's for bowels and I should have it at breakfast. Sounds suitably repulsive, but I shall try it.

And he's sending me for a CT scan. Result. So now I can chill out [between scoffing fibre and guzzling water and linseed oil] until the scan results. Hoorah.

Monday, 16 November 2009

what WAS I thinking?

Today was a bit odd. The plan was to go shopping for shoes. I need shoes. I have a fetish for Kirk Geiger right now. Although any shoe will do! Retail therapy. These are pretty kick ass.

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And jeans – but I hate shopping for jeans. They are always too long. And I always have to try on about 50 pairs before I find anything that's remotely a good fit, and by that time I am in such a temper [plus HOT and bothered and looking like a maniac] that shop assistants run away and I can't pay. Anyway, I didn't do anything, as I went upstairs to get ready to go out, took one look at the bed and decided it would be altogether more sensible to just go to sleep for an hour. Fatigue – I don't get it so often now, but when I do…uff. Well, the hour became all afternoon, and having gone to sleep while the sun was shining in the window [nice!], I woke up to total darkness! It was only 5.15, but night time already.

But I obviously needed the rest, as I feel great now. It's been an age since I just allowed myself to have a rest – I seem to fight the idea of sleeping in the day for some reason. Maybe a kick back to being in chemo, when I HAD to stop and sleep in the day, whether I liked it or not. So tomorrow is now shopping day.

In the meantime, earlier on, I was deleting, replying and sorting a zillion emails in my inbox, outbox and blah box. And I came across one from Ovacome, full of useful information about statistics that I might want to know for Thursdays TV interview. So I clicked on the link – ah, stupid. VERY stupid. Today was NOT the day for looking at that [no matter how useful!]. Survival rates, how many women die from ovarian cancer, Ovarian cancer statistics table…blah blah. I have made a rule NOT to look at stats…so why did I do that? I did get rather upset.

But as usual, something happened to make me feel better [I find this happens a lot] – my step daughter Jen text me about bikinis. And holidays. And we texted back and forth, and I forgot all about the stats. She's working until 3.00 in the morning. She's worrying about buying a bikini for the holiday – she also had some encouraging words for me about tomorrow's check up. So I got involved in The Search for A Bikini. See? I have my priorities sorted :o) Bugger the stats, I have deleted that email, and the web site…

Jen.

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Sunday, 15 November 2009

a busy week

This week is going to be entertaining if nothing else. Monday I have a day off – yay. And double yay, as so does Aj! Amazing. A day off together? Woop woop!

Tuesday I have The [Dreaded] Check Up at 3.15. Yay and not so yay until afterwards when they've told me I am ok, and that there's still no recurrence of the blasted cancer. Which is what I am obviously hoping for [no brainer there eh?]. And it seems lots of other people are too, thank you very much all my crazy friends and family. If my results were taken only on my well wishers prayers and hopes, I'd never ever worry. A friend posted this quote this week, and I love it - "Good friends are like stars...you don't always see them, but you know they are always there..." Magic. And so true.

Thursday morning at 8.15 [8.15!! fogo!!!], I am doing the interview for SKY Real Lives, 'The Secret Guide to Women's Health' in a house in Notting Hill. Apparently Aj will be ensconced in the 'Green Room' – I hope it has food or he'll be most aggravating heh heh.

All rather organised, taxi from home to the train station Wednesday night after Aj gets home from work at 6.30  [yep, it's changed from Wednesday to Thursday – aaargh], direct train through to Paddington, another taxi waiting to take us to the hotel in Bayswater. We'll get there about 9.30. We have discovered a Brazilian rodizio restaurant right down the road from the hotel thanks to Google [love google!]. We will have dinner there and see if it's as nice as the ones in Portugal, which we LOVE. It is certainly far more expensive than Portugal, so it better be good! Or we'll complain ;o) I best remember to book that actually. Caipirinhas and picanha here we come!

picanha

After the TV interview [which is, by the way, with a very FAMOUS person – but I can't tell you who now! Wait with baited breath please…all will be revealed] and with an eminent Professor of Medical Oncology too [also to be revealed – sorry!]. And, my favourite TV person will be there, Lorraine, so I am not TOO nervous! Amazing – that I will meet someone who spends his entire life trying to find a cure for ovarian cancer. Probably [definitely!] I should hug this man and tell him how really grateful we all are – without people like him, men or women, I'd be dead. Thank goodness they are out there. Pretty tedious to die in the middle of things!

Lunch time on Thursday we take the train home from Paddington, and in the evening I am off out with a bunch of cancery types like myself. I am sure by that point Aj will be rather glad to get shot of me. We girls are having dinner at the Port Royal just for fun and to have an evening of nattering. Elly is doing us a special meal, and of course there's a quiz going on, so it should be rather lively. Looking forward to that, as by then, everything else will be done.

One way or the other.

today

I can't believe it!! It's sunny! Hoorah - off into the rather soggy garden...amazing how a bit of daylight can make one feel so much more cheerful. About everything!

Saturday, 14 November 2009

four days to go

I am sure  a lot of people reading this blog must be thinking "oh for Gods sake, she's not on about THAT again?" and they'd be right. it's boring for people who don't have to have check ups like this – it's nothing for people who are 'normal'. Good. I am pleased about that. And now I am going to bed. exhausted.

Friday, 13 November 2009

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

Your Blues Ain’t Like Mine

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

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

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

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

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

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

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

Thursday, 12 November 2009

five days to go

Delete Key 

Hmm – so busy ranting about the STOLEN 'A board' [that made me SO cross! thieving is so disgusting. yes, chop off the hand] that I forgot to update The Worry List.

Worry 03: Delete [thud…]

The drive home from Gatwick was ok, as far as driving for hours on end in billowing [yes, 'billowing' – not 'normal', no that'd be too easy – but it least it wasn't freezing fog] FOG, tipping rain and pitch darkness goes. Traffic wasn't as heavy as I'd expected and the trip was uneventful [love that word] apart from the usual halfwits who can't drive even in daylight. So I had an early night after a lovely chat with the FH. So good to be home and see his little face. Yay!

Worry 04: Delete [another resounding thud]

This morning, up nice and early, unpacked, slapped the laptop into sync mode with the pc and raced off to have my bloods taken. Yay -the phlebotomist is also my GP's secretary. No exploding pumps or problems at all. It seems the veins in my right arm [only one lot of chemo went in that arm, which may have helped the veins – less mustard gas is possibly a good thing] are now recovering. So my blood is now en route in it's little tube to the lab for scrutiny. I'd quite like to see that lab. When my blood is there. So I can get my results immediately.

Yes, I need therapy. Anyway, the rest of the list:

Worry 02: under construction…well. what can one say?

Worry 05 [and Worry 01]: bah. I keep thinking I am dying. Full of cancer. Every ache or pain I become distraught. In my head. Here. I try to deal with that. I am sure I am gaining ground, even though sometimes the people around me seem to forget where I am...just one year out of chemo. I am not sure if the shock has worn off even now – although I am VERY good at ''appearing'' normal. Perhaps TOO good. Maybe sometimes I should collapse on the floor. Screaming. Just so people can see what's really going on in my head. But then again, that wouldn't be very professional; now would it??

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Yoga Bear

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Halle Tecco
HalleTecco_portrait 

Thanks for your help and support!

i don't believe it! robbers in Torquay!

I happily published some bits and pieces about Aj's new business opening last week. In the post there is a photo of an 'A board'. Well, guess what? Since the shop opened, it took just ONE week for some cretin to actually steal it! It cost over £150.00 – plus design and artwork…and WHY would anyone steal it? Are they opening a shop of the same name and just couldn't afford their own? We could have loaned it to them had they asked…grr

If you see this A board anywhere, please ARREST it!! And also the person who stole it – whom, I might add, I am rather hoping will drop it on his toes and have to have foot casts for a month.

What kind of person does this kind of thing to a brand new business? I am sure I have lots of descriptive words that are suitable, but not publishable.

Mutter mutter.

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Tuesday, 10 November 2009

one week to go

Seven more days and I have my next check up. Uff. That'd be Worry No: 01.

I have plenty of other things to worry about, but that’s the thing that keeps pushing it's scary little face to the forefront of my mind. It makes everything else seem quite irritating and gnat like.

Worry 02: I am quite keen to get a new contract sorted out here in Portugal - the 2 months notice period has come and gone, so ideally, if the company wish to renew it for another year we will resolve that before I return to the UK. That's in, and under consideration. If they don't I will need 4 hours to say goodbye to everyone. If they do renew, that will be one less thing to stress about.

Worry 03: Drive home late tomorrow night. I am always concerned at my tiredness level - Gatwick is three and a half hours drive. During rush hour. In the dark [and probably the rain] Oh joy.

Worry 04: I get home, unpack, go to sleep, jump up Thursday morning for work, then race to the GP to have my bloods taken. I still hate needles even after all the stabbing and prodding that's gone on over the last 2 years. But I have wised up and no longer allow this appointment to be made with a nurse - I much prefer the phlebotomist thanks. Pumps exploding off the needle and black and blue arms have taught me a lesson. My veins still suck [well, they lay low that's for sure] and need an expert to find them without everyone ending up looking rather pale. Not to mention feeling rather cross.

For the last few weeks I have had a horrendous cold and cough  [thankfully the cough is no longer forcing me to bend in half and the cold is gone] but I haven't wanted to ask for any antibiotics in case they affect my blood tests. Yes, I know…stupid. But there you go. So once I've had the blood drawn, if I am still coughing my guts up, I shall shoot off to the GP and get something for it.

Worry 05 [see Worry 01]: The Check Up…tadaaahh…why am I not used to this by now eh? Although I definitely feel less demented so far, there are still 7 days to go. Lots of time yet for mass hysteria. And I don't think I'll ever get used to it; maybe it is expecting too much to even try. It's like 'getting used to' being hit by a car - I suppose you probably just don't. Though I wouldn't like to have to prove that…

And last but not least - I haven't done ANY Christmas shopping at all! Useless! After Tuesdays check up and Wednesday's TV thing, that is going to be the order of business methinks. Although next Thursday night we're off out for a girly dinner, so it may have to wait until I recover from that…perhaps I'll simply grab Aj and abscond over Christmas? Now there's a thought…

Monday, 2 November 2009

not much thinking going on

I have 'forgotten' far too many things recently. Well, not recently – but generally since being chemo-ed. Some things were quite very serious but hopefully will be resolved. This memory thing plus the 'I can't prioritise or FINISH things' thing sucks. 'Constantly baling out water – but I still feel like I am going to sink'; that's me. And it's hard to explain – there are no 'good' reasons that make one forget, neglect or avoid doing IMPORTANT things. It's getting better – the book 'Your Brain after Chemo', has helped. What a relief – I am not the only person like this. There are a LOT of us. Maybe we should start a club, as our normal friends probably shouldn't have to put up with this crap.

Multi tasking now involves palpitations and lists. I am getting quite good at using Excel [there's a programme I detest!]. I need to be very organised or feel like I might scream.

Hardly surprising, with everything that's been going on. Aj has relocated his business. Relocating a tile shop involves masses of heavy lifting, so he has been at it from 7.30 in the morning until 8.00 at night for about 3 weeks. And dealing with all the legal side of it, banks, solicitors etc during the day [in between hauling pallet loads of tiles, stands and stuff] has been making him crazy. He has been mainly falling in the door every night, then almost straight to bed.

My evenings have been spent working on all the advertising, the website and signage. This weekend I was painting floors blue and carrying horrible hand boards about in an attempt at organisation of chaos. I hate painting floors. We are both exhausted. But today the new shop opened! Yay!

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And the other good thing: I haven't had a second to think bad thoughts for weeks. Well, apart from the fact that this hideous cold I have had has now moved to my chest and I am worried about it becoming bronchitis. I am coughing myself awake at night. But drinking cough medicine and sitting upright seems to help.

On the the 14th we were supposed to have the swine flu shot – seems Aj has to have it too in order to avoid getting it and giving it to me. But we have been moved to the next batch, which no-one knows the arrival date of. Apparently they do the Swine Flu vaccination in batches of 500. They will send us an 'invitation'. Uh?

I got my GP to sign that form that gives cancer patients free prescriptions. Gotta reap some benefit from this horrific disease right? Still waiting for that to arrive.

In the meantime I am going to Portugal to work again. Need to leave at 5.30 in the morning. The day after I return I go for my bloods. On  the 17th November I have my next check up. On the 18th we are off to the SKY studio for yet another interview.  Then we are off to see Rodrigo Y Gabriela [something to look forward to – yay]. Then to Brighton to drink cocktails on my friends rather posh seafront veranda. Then the kids are down for the weekend…

Actually, now I come to think of it, no wonder I'm confused and forgetful. Roll on the Christmas break!

Saturday, 24 October 2009

ow!!

Right – booked the bloods while I was malingering at the surgery – and had the flu jab, and I also have to have a 'swine flu jab' – eek! Haven't booked that yet, but no doubt I will. I really feel like a hypochondriac!

I was a tad fraught at the thought, as I understood that these jabs actually inject a bit of the flu virus into you. But apparently that's not so, its an antiviral. Whatever it is, my arm feels like it has been battered with a baseball bat!

I arrived at the surgery 10 minutes before my appointment, expecting it to be late. Ha! the surgery was like a party! Loads of people over 60 all rushing about chatting to one another, a table for the 'Alphington Friends' to sell tea and [OMG] Christmas puds…uff. I think I was the only person under 50 there. I certainly got some odd looks.

Anyway, I was in and out in 2 minutes, stab, blah, bye. Now I just have a sore arm, neck and back – it's a bit like a cholera and typhoid…hurts a lot, gives you a bad arm, but goes away quite quickly. I hope! Every other time I've had a flu jab I've had this, and nothing else, so lets hope it's the same this time!

off to the GP

well today was great! I toddled off to the GP at 6.00, Aj made me an appointment whilst I was in Portugal, as whilst I was there I had that massive panic attack, crying down the phone to my oncologists secretary. So off I went.

I really love my GP. Being that I am convinced that he saved my life with his speedy typing/phoning thing when I was in crisis last year, well, why wouldn't I?

He's a tad eccentric. Which I like. I am not exactly your average cancer patient, so we make  a good pair. He asks me how I am in a way that really means 'how are you'. He explains everything to me, no matter what I ask, right down to the minutiae. He's a boffin type dude. Love it. No fancy name though [no Le Pew here!] – just Dr Bradley. And he has sort of crazy hair. This helps me trust him. I have crazy hair to.

He has decided I need a flu jab. And a swine flu jab. Hmm. Oh well – can't be worse than the blood draws which I hate, so I am booked in.

Wednesday, 21 October 2009

Free House Cleaning for Women in Cancer Treatment

cleaning

A clean home goes a long way towards transforming our spaces. For people experiencing cancer treatment, cleaning house can simply be too difficult, at a time when a healing environment is critically important. Thankfully there's a non-profit called Cleaning for a Reason...

Cleaning for a Reason is profiled in the current issue of the Angie's List magazine. Women who are currently in treatment for cancer are eligible for up to 4 free house cleaning sessions from a local cleaner. There are over 300 house cleaning businesses across the country that have enlisted to provide this service. For more information about how to qualify for this service, check out the Cleaning for a Reason website here.

And they are always looking to add more cleaning businesses to their ranks so if you hire a cleaning service, let them know about Cleaning for a Reason!

Image: Flickr member The Shopping Sherpa licensed under Creative Commons

Tuesday, 20 October 2009

check up time again…

why are we so nervous nearing the check up? we/I should be jumping for joy. It's just a confirmation that we are well. Right? No. It's a test to see if the cancer has come back.

The last few weeks I have been worrying a lot. When I initially asked Dr Hong HOW I would know if I had a recurrence, she said that I would probably have the same symptoms as I had in the first place. And that it would probably recur on my stomach IF it were to recur. Oh joy. They were hardly 'in your face' symptoms were they? A swollen tummy, a lump in my groin, extreme tiredness. Well, I have the extreme tiredness again, that's for sure. And it worries me. Plus, apart from being exhausted, I have a lot of strange pains in my stomach – these are apparently 'normal'. After massive surgery like I had, you get pains. Adhesions etc.

Whilst in Portugal I rang the oncologists secretary in tears – she said better to wait until your appointment. So, I will.

But normal?? What is that?? Tomorrow I have to phone and book myself in for my bloods. I should have done it today. But as usual, I leave the important things to last.

To my detriment.

Monday, 19 October 2009

Sunday, 18 October 2009

smiling hurts!

this is amazing! It made my face ache from smiling, it's such a happy video – everyone should have a wedding like this!

fantastic! see the whole story here!

travelling and new friends

well. then we went to Stoke. Aaargh – what a nightmare. The trip is, on average, 3 hours, 3 and a 1/2 tops. We took nearly FIVE [yes, 5] hours to get there. Never saw so many crashes on one road! The M5 is jinxed right now. Avoid! The first was a 5 car pile up. Then a three car crash, then road works, then another crash, more road works…it was quite literally, TORTURE!! I think I was in first gear for three hours – eventually had to swap with Aj, as my knees were locking up. Uff.

Eventually we arrived, exhausted, to have a birthday dinner with the girls – Chinese take away! yesss. And chocolate cake [with candles] for Vicky and Aj [Vicky's birthday is the same week as her Dad's].

Aj and his girls:

DSC_0008

Then on Saturday we went to put flowers on Aj's mothers grave. I don't mind visiting Clarice, but I always hate this. Confusing. I don't like the cemetery, I don't like what seeing all those graves does to my head. And I don't like walking across the graves either! I always come away from there thinking horrible things and feeling upset. Feeling as if I better sort out where and how I want to be buried / cremated whatever. Not my fave type of thoughts.

Whatever. In the afternoon Aj went to see his beloved football team play against West Ham. While he did that I went to visit a woman recently diagnosed with ovarian cancer. We got in touch through Ovacome. She was diagnosed in September, and had her first chemo last Monday. As I was going to be in the area, we thought it might be nice if we met. Maybe I could give her a bit of support and encouragement. I know that I really appreciated it when I met the girls I now know as friends after I was diagnosed. So, off I went.

I was so nervous. I worried about telling her too much, too little, or something that might really upset her. I tried to bring her some things that might help. I am not a qualified 'let me help you with cancer' person – or am I? We who have had cancer, we know it well. Maybe I am. And it was great! We talked and talked, so much that I forgot the time. Eventually she dropped me back – but I think we could have waffled on for another day. A very strong woman with the right attitude.

But it brought it all back, the scary bits, the things I have compartmentalised. The things I have 'forgotten' [not quite]. But that was good, as I am now in a position to realise how very lucky I am. In a year I am hoping that she will be where I am – a survivor and also a person who is able to 'put away' the worst bits. But first she has to get through those 'worst bits'. It's heartbreaking. But I did it, so anyone can.

It's nice to forget some things. Sometimes chemo brain is a blessing!