Week 22 #R2BC - 'the one where I've lost my belly button'

Reasons to be Cheerful at Mummy from the Heart

I'm just going to dive in and write from my heart the stuff I'm thankful for. I'm still a little 'under the influence' so apologise if I repeat or am grammatically incorrect.

I am sore, but in good spirits following the eviction of Geoff the Gallbaldder.

I'm being looked after wonderfully by my parents

I seem to have 'lost' my belly button in the operation. It's not a big deal, as someone said it actually serves no purpose (other than a measuring point as to how far south my boobs have sagged) Not sure why it took me two days to realise what had been done to it though!

I sent the pic to my daughter who said 'it looks like a bum hole' and cruelly to my sister (who has a fear of belly buttons) who said 'would have nightmares.' I've got to get my laughs somewhere.

Everyone, and I mean everyone on Twitter, have been super supportive and kept me going. Thank you guys, you know who you are.

And I now have 5 more scars to add to my collection. I know to some people, scars aren't something to celebrate, but for me they are evidence of events which have happened to me. Lots of people have scars, it's just for them, they are on the inside.

These are my battle wounds and I wear them with pride.

Don't forget this is a blog hop, so take a look at Michelle's post and the other linked posts by clicking here

Portmanteau anyone?

Can't believe it's Tuesday already and I haven't posted the latest email from my brother. I must admit though I actually had a life (albeit it shortlived) as I went to the finals of BGT (still to blog about that) and then had a terrible gallbladder attack which laid me low until now.

This is a particularly thought provoking post from Mark this week and one we can all join in with!


Hi Fay

Don’t know if you’re going read this one on Saturday because as I understand it you’re off to Britain’s Got Talent Final. Wooooo! Not being in Britain anymore we don’t follow Britain’s Got Talent but we totally did when we lived there. Mainly it was to laugh at the crap acts and to guffaw at Ant & Dec’s piss taking but hopefully there’ll be some top quality stuff to see.

Obviously there must be at the final, I bet it’s wall to wall Susan Boyles, precocious child stars and novelty juggling acts. Just remember to do your standing ovation when the chorus to Boyzone’s No Matter What comes on. Or do they add that music in post production? Anyway hope you enjoy it.

So you’ve finally got a letter of referral from the oncology department. I bet you’ve got some mixed emotions, somewhere between relief and annoyance. Reloyance. Or maybe annoyief. I love to make a portmanteau out of two conflicting emotions, it’s a new hobby of mine mainly because I can’t do real life proper hobbies until a one and a half year old toddler is okay with me doing more than moving into the next room without him. During waking hours the kids take up most of my physical time but what goes on in my head is off limits to everyone except me.

So in between thinking up zombie apocalypse survival plans and pondering time travel paradoxes if I were to travel back to the Triassic period and eat a lot of sea food, I now like to come up with new words for mixed emotions. I’d like to share with you a few so that you may come up with some of your own…

Sool – Both “sad” and “cool” at the same time. The other day while playing with Sam I punted a beach ball up in the air, back heeled it without looking, knocked it back up in the air with my knee, headed it towards Sam, it bounced off his head and I caught it with one hand. This was both “cool” (because of the combinations of movements) and “sad” (because it was done with a beach ball and a toddler). Sool. Where being cool and sad cancel each other out.

Annoogle - a mix of “annoyance” and “Google”. In New Zealand the substance known as flint (a hard, sedimentary cryptocrystalline form of the mineral quartz categorised as a variety of chert) does not form naturally. I was looking for sources of flint because I have a fire lighting steel which traditionally needs a piece of flint to strike it to produce sparks. Annoogle happened because so many basic everyday words for basic everyday things that meant only one goddamn thing a hundred years ago "flint" has been appropriated by dickwad manufacturers and small businesses. Do a search for “where can I get flint” and I’ve got search answers for all kinds of crap that don’t have anything to do with real honest to goodness stone. If it’s an old timey piece of kit like a touchstone for example (a stone used in the assaying of precious metals) the name has been appropriated by some company or other that has nothing to do with the original and they’ve gone and shat their name all over the internet like it’s a dirty protest or something. This leads to annoogle.

Refunny – a mixture of “relief” and “funny”. This is best summed up by watching a toddler fight sleep. You’re relieved that the said toddler is finally going to sleep but also find it funny watching them as their eyes close, open, lose focus, close, open, close and generally fight Mr Sandman to two falls, two submissions or one knockout.

Empeally? - a mix of “empathy” and “really?” I totally empathise with why someone would want to drive 30km/h below the speed limit on a dry straight road because they’re probably not in a hurry and really want to get good milage on their Nissan Tiida Latio but “really?”. If you’ve got a clear road ahead of you but your rear view mirror shows more vehicles following you than Martin "Rubber Duck" Penwald then it’s time to pull that shit over and let everyone else get to where they need to go.

Next week I’m thinking of sharing some brand new words that I’ve created by portmanteausising swear words. Funt for example. Actually that’s all I’ve got.

Take care, love,

Mark xxxx


Am sure we can come up with some more, sholloxed when the you know what hits the fan and bounced off into you lap to hit your Jedwards

Come on, that one is pretty terrible, am sure you've got better ones than that!

And as always Mark

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Can you beat him this week? I think I can...... email from my brother down under

A vomit fuelled early instalment this week from my brother.

I will let him explain
Hi Fay,

Good news at your end I read.  Hurrah!  Ready to hear how hard my life is?

So another week’s gone by, we still haven’t got any hot water and everyone except Eva came down with virus.  Now I must warn you that this e-mail has got a lot about puking in it so you may want to avoid it if you’re not feeling the best at the moment.  Still reading?  Okay then, you’ve been warned …

On Sunday Sam kicked things off by puking in our bed a couple of times before I elected to stay up most of the night with him in the baby sling while Juliette began retching in ever increasing decibels into the toilet.  She was talking on the Big White Telephone and if it’d been an episode of Countdown she’d have found that she was all out of consonants.  So the reason I put Sam in the sling was that

(a) there’s only so many times you can change a mattress cover before you realise that the ratio of clean mattress covers to dirty ones isn’t going in your favour and
(b) Juliette was busy.

When Sam is in the sling he’s basically strapped to my chest facing me so I just let him puke down my front every ten minutes for five hours solid.  When he was finally bored with the puking I unstrapped him, tossed him back into his (clean) bed with his mummy and peeled off my T-shirt.  No hot water, eh?  I’ll just throw some sawdust over my chest like they used to do with puke puddles in primary school.

Just to finish off the entertainment when we got up on the Monday morning Sam puked into my lap minutes before I had to take Eva to school.  Inevitably after I sponged myself down it looked like I’d wet myself.  Good job it reeked of puke otherwise the other parents at school drop off might think I’m disgusting.  I was thinking at the time that I might have to change my jeans for a fresh pair and I never like doing that.  It’s a waste to change jeans too early unless I’ve spilled at least eight of the following filths on my jeans; puke, wee, poo, cat dribble, mud, slopped beer, slopped tea, slopped coffee, milk, pancake mixture and alpaca cud.  After the puke that morning I was only up to six of the eight.

I will not be flexible on this (and after two months neither are my jeans (boom-tish)).

So me and Juliette have been playing “Who’s The Most Unwell?” Top Trumps with both of us claiming to have had it the hardest.  No other couples play this do they?  “Yeah, well, I had three hours sleep before I started vomiting, at least you had a good night’s rest before you started hurling.” “Well I had to breast feed Sam and I never got any sleep during the day because of the workmen ripping out our new bathroom.”  “Eeee, you were lucky,” (at some point it always turns into a bastard version of the Four Yorkshireman sketch), “, I actually went to sleep, dreamt I was awake and woke up tired.” “You had it easy, I used to dream about waking up tired...”

Truth is Sam wins Most-Unwell-Top-Trumps hands down because he’s still sick and yet as only a toddler can he’s happy as Larry in between the occasional puke. Yay, bird!  Burp.  Puke.  Yay, tractor!  Eva also remains in the pink of health despite our constant worries that she doesn’t eat properly, is too skinny and is sickly pale.  I suspect she may have some X-Men Wolverine healing gene that is only now becoming apparent. The healing gene is poised any day now to kick into full and cure those little inspect bites on her legs that she keeps getting me up in the middle of the night just to put “magic cream” on.  Or maybe she’ll just keep that private torture going for a few more years.  “Eva, it’s two thirty in the morning and more to the point you’re thirty six years old now, you can put your own “magic cream” on.”  I'm tempting fate now.

Also despite being the only one of us who hasn't been unwell she continues with the whining.  This time it’s whining about Sam getting too much attention when for example he barfs onto his dinner plate during a meal.  Yeah, what’s all the fuss around Sam for?  It’s normal to puke after eating one of daddy’s dinners isn’t it? And why has Sam suddenly got carrots on his plate when I don’t?  It’s not fair!

So to get off the subject of puke I’m just reminded by the mention of cooking that the other week it was Mother’s Day here in New Zealand and Juliette asked for pancakes with chocolate spread for her Mother’s Day lunch.  We added sliced banana to the pancakes to make it more healthy but personally I think that once you've reached for the Nutella jar you might as well drive the concept of “healthy eating” to the airport and wave it off on a long holiday.

I was trying to save on the washing up by tossing the pancakes rather than use a spatula but the uncooked liquid part of the pancakes kept sloshing back over the pan and onto my shoes.  I never realised that when you toss a pancake you always instinctively toss it back towards your exposed face when it makes more sense to toss the boiling hot fat mixture away.  And yet it’s impossible to toss a pancake any other way.  Go on, mime tossing a pancake and tell me I’m wrong.

The upshot was that when it came to bed time I thought I’d picked up some horrible new foot disease because of the mess on my socks.  Luckily it was just pancake mixture that had gone through the holes in my Crocs. Your feet smell of cheese!  No they don’t, they smell of Shrove Tuesday.

Hope I haven’t made you feel too unwell with this e-mail.  Good luck for Monday with the operation and take care of yourself.  Maybe have some pancakes with Nutella on them, they’re most delicious.  Just don’t think about my jeans while you’re eating them.

Love Mark,
Hey Mark

I have pictures in my head and they aren't good ones! I remember James throwing up from the top bunk. The height meant it hit the floor at velocity and managed to hit every wall! So even though your life is much harder than mine, I think I beat you on the vomit score.

And if anyone else can beat him (and in the process, of course, make him see his life isn't that bad) please join in and leave a comment. I know he reads them (Well Juliette does and passes them on!)

And as always, dear Brother

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Short and Simple...... #R2BC Week 21

Reasons to be Cheerful at Mummy from the Heart

Another week and another look back, celebrate and link up with Michelle's Reasons to be Cheerful on Mummy from the Heart.

Lasts week's post (But then life would be boring...) was a little full on, but I'm pleased to say everything worked out! It inspired I Believe.... but to cut a long story short

Geoff the Gallbladder is coming out on Monday

That's it
That was the best, the all encompancing event for this week............................
Try 2

Hoorah! If you missed it, I'm scheduled for another surgery on Monday, this time to remove Geoff. Not only does it mean in a couple of weeks I will be pain free but also I get a chance to join the drugs trial. I am over the moon (to say the least) and its coloured all my actions for the rest of the week
  • I've cleaned (a bit but not too much)
  • I've meal planned
  • I bought a new little suitcase because I will staying with Mum and Dad for a few days afterwards
  • I've been for a pre-op
  • And rested....a lot

Do you know what guys, I've really tried to add some bangs and whistle's to my great news this week, but it just doesn't look, read or feel right.

The simple fact is, I'm eternally grateful to two doctors who worked together to make the gallbladder surgery a reality. It's scheduled for Monday.

It means I can be part of the drugs trial I desperately want to be included on. It means I get scans and blood tests everything three months even if I'm in the placebo group. It means lots of people looking at my scans, which has got to be a good thing!

The rest of my week has been shaped by the news and pales to insignificance. I'm sorry it's short.

But this is how I feel

Eternally Grateful

My 10 tips for surviving a hospital stay....

Geoff the Gallbladder is coming out on Monday, I got the letter today confirming admission details. This prompted me to arrange my pre-op assessment. It's booked for Wednesday and it got me thinking, I need to start getting myself sorted out! 

Eeeek! I'm planning on staying with my parents for a few days afterwards so will have a hospital bag plus case for going to theirs to pack.

I'm by no means an expert, but going for my fourth operation in just over a year, and seeing MrC through six operations and over 40 emergency admissions means I've learnt a thing or two. 

The NHS website (which can been seen here and opens in a new window) details the basics, like nightwear, medications etc.

For me though, its the things you aren't told about which make a difference and the stay more bearable. No-one every rarely want to be there, are in pain and feeling ill, so these are a few things which keep me calm and positive, until I can come back home to my own bed!

1 - I take my favourite perfume, quick spritz not only makes me feel good, but can also cover any smells from elsewhere!

2 - Toiletries are the travel version, takes up less space and doesn't matter if they get lost. I take baby wipes too, good for quick clean ups and freshen, if you are too poorly for a proper wash. 

3 - Mouthwash helps take bad tastes away to and give me a bit of pick me up through the day.

4 - I take various things to keep me occupied, because I have the attention span of a goldfish for several weeks afterwards and flit from one thing to another. So books, magazines, crocheting are my go to things. Music is always great and I've also discovered the joy of audiobooks, so don't forget your headphones.

5 - On that note, ear plugs and eye mask can help get a good nights sleep on a busy or noisy ward. But please mention to the staff when you are going to pop them in. I can imagine a code blue being called if you don't rouse from a deep sleep! 

6 - I make sure my pyjama's look and make me feel good. Ok, I've had an operation and am feeling kinda shit, but you'll feel worse when you become more compus mentus and realise your comfortable go to sleepwear has got a hole under the arm and stains down the front. I also go for mix and match stuff so when you spill your tea down yourself you only have to change the one item.

7 - I also stagger visitors and ask them to keep their visits short. People coming in to see me do break up the day, but I'm in hospital for a reason and need to rest too. I also try space them out with time for a nap in between to get my strength back for the next one. Flowers and gifts are also better if they are saved for when I'm at home and can fully appreciate them. It can be a long walk to the car post op when released, imagine it with flowers, balloons and cards?

8 - Keeping myself hydrated (unless told otherwise. My friend went in for a heart condition and was on restricted fluids, so please check) Water is best for me, but if that doesn't float your boat, you can always have squash in between the tea trolley going around the wards. I tried fresh juices, but they soon go off in the heat.

9 - Another feel good tip, which @dorkymum reminded me of is take in a good moisturiser. Hospitals are very warm and you soon dry out! It was lovely to smother my legs before putting those ubiquitous surgical stockings back on. I have a handy bottle by the side of the bed for when I thought about it! 

10 - Mobile phone. I love to have my phone with me, lets me keep in touch with the outside world via Twitter and feel less isolated. However it can be a nuisance to other patients. So its kept on silent, calls are short and put onto airline mode at night! 

I asked for some tips on twitter earlier:-

I also had @mumonthebrink saying to have an escape plan and @kidschangenowt talked about taking your own booze! 

Have you got any-more top tips for a hospital stay? Let me know, so I can be as prepared as possible! 

I Believe...

Sometimes you just have to believe it's going to work out, that all the pieces of the puzzle will fit together so you can see the bigger picture. That people are going to do the right thing because its just the right thing to do even if its not the process.

I believed!!!

Yes you guessed it, pesky Geoff is coming out. I've also had confirmation I will be eligible to be included in the drugs trial. Yay!!! 

My two surgeon's have worked together and I'm going in for Geoff removal next Monday

I've still got to be well enough following surgery to start the drugs trial. I need to ensure I look after myself between now and then and stay as healthy as possible. The mind is a brilliant thing, am sure with your help and a positive outlook it will work out.

I believe

Whether you think you can or think you can't - you are right.  ~Henry Ford

This post is following on from 'But then life would be boring...'

Meal Planning Monday w/c 21st May

I didn't meal plan last week and now the cupboards are well and truly bare! I've scoured the fridge, tins and freezer and have concocted and created some weird and wonderful meals using up the bits and pieces I found. This resulted in cheesy vegetable lasagne, cheesy cottage pie, roasted sweet potato, various vegetables and chicken.

It was fun, but I prefer to plan ahead

So this week we are having:-

  • Chicken stir fry and wholemeal noodles
  • Sausage Casserole with pasta
  • Pork Steaks with creamy mash, vegetables and apple sauce
  • Fish Finger sandwiches with a big plate of salad 
  • Pizza
  • Breaded Chicken with salad
  • Soup with crusty bread

So there you go, I've gone with what I fancy and sod the diet!

For more meal planners, who have maybe considered things like cost, nutrition, balance and taste, don't forget to check out At Home with Mrs M. And if you feel so inclined, why not join it, go on, you know you want to!

PS am secretly hoping I get called in for the operation, so won't be cooking at all! Watch this space!

The one where the cat doesn't get electrocuted...

Hooray, a new email from my brother for me to share with everyone.

Hi Fay,

Early e-mail again this week.  Lucky you!  I read your blog about your oncology report and the drug testing thing (if you missed it, its here) and I reckon you should push to get it done a.s.a.p. and get yourself on the drug trial.

Well, that’s all really.  Write to you again next week.

Mark xxx

Not really.  How could I miss an opportunity to tell you on a real life woe that makes your medical problems look trivial.  You see this last week we’ve gone without a hot water boiler.  No hot water at all!  Oh the horror.  At least that’s what people think when you tell them but it’s actually been a minor inconvenience at worst.  And here’s why …

As you may or may not know we’re moving our bathroom from the back of the house (which is cold and a long way away) to one of the four bedrooms in the main house (which is right next to everyone and is warm).  Eventually the old bathroom bit will become an awesome on suite master bedroom with a walk in wardrobe and beer taps and plasma screens on all the walls and disco balls and a little robot that will ask you if you want a sandwich and dancing unicorns and everything.  It’s a long term project but for now it’s all go for the new bathroom so we don’t have to get up in the night for a pee and go down to the part of the house that the previous owners called “The Icebox”.

Obviously the estate agent didn’t tell us that’s what they called the bit of the house where we’d be spending long periods of time naked (come on now, we’ve been married seven years and we’ve got pre-school children here now so less of that smut), but we found out that’s what they called it thanks to a neighbour.  Supergrass we call him.  On account of all the lawn mowing he does.

Part of the new bathroom plan is to get rid of the old electric water boiler and install a gas Infinity system.  Like 99% of Kiwi’s here living rurally stuff like mains water, mains gas, broadband through the telephone wire and mains sewage is something that ‘ain’t ever going to happen.  What’s painfully obvious when you actually take stock of the situation is that we live in a field. It is a field that has a power line slung in and a telephone wire seemingly added as an after thought.  Everything else you’ve got to get yourself and store on site or it’s back to the nineteenth century.

We get water from a bore hole that I reckon used to be the well/long drop toilet a hundred years ago (most people collect rain water from their roof but birds shit on your roof - disgusting), we’ve got bottled gas for our cooker like we’re living in a caravan site and thanks to gravity and a splash of water we poop into a septic tank.  The septic tank gets emptied every three years.  

If you remember to do so.

The old boiler plugged into the electric and that was cool but recently it started tripping the circuit breaker and heating the water to a billion degrees centigrade.  But as long as it produced hot water we were happy.  Then I decided that perhaps I should have a look and found out that it’d been leaking long enough to corrode all the electrical contacts.  I thought I’d better check it out so not being one to laugh in the face of death by electrocution I switched it off and then tried to get Tom the cat to lick the terminals to see if they were live (he’s got nine lives after all and I’ve only got one).  However Tom was singularly uninterested in licking rusty metal even after I’d flicked tuna onto the circuit board.  So I put the cover back on but after that for some reason the boiler never worked again and just sort of continued to leak water.

Very cold water.

But we had a fool proof plan.  Do nothing!  We were getting a new hot water system.  Genius!  The planned new gas Infinity system works by taking a water from the bore hole and passing it through a pipe that gets heated up with a thousand tiny gas fuelled blow torches so that you get an infinite supply of hot water.  Hence the name.  You never run out of hot water.  It’s Infinite!  (Unless the bore hole runs dry or the gas runs out.)

The Infinity unit gets bolted onto the side of the house along with two industrial sized gas bottles that are chained to each other and the building so that in the event of a gas bottle explosion we can all experience what it’s like to ride on a Saturn 5 rocket for the remainder of our lives.  It’s be like the animated film “Up” except it’d be called “Along”.

Anyway, the Infinity system is due to be installed sometime in the “near future”.  We’ve got it all ordered with our builders but when it comes to being assertive and demanding that something be done I end up talking like John Le Mesurier’s  Sergeant Arthur Wilson from Dad’s Army – “I’m awfully sorry to bother you but would it be inconvenient to, ha, ha, ha, ummmm, sort out a date for when we might get some hot water system?  Jolly good.  Awfully sorry, I understand.”

So we haven’t got any hot water but it’s not been a real problem.  Our washing machine and dish washer runs off the cold water and they do their thing on their own.  For bathing we’ve got a wood burning stove that I pop a three gallon pot of water on when I light the fire in the evening and it’s hot within half an hour.  Flannel baths all round.

“But what about day to day washing your hands?” I hear you ask.  Well think about how you might wash your hands.  You turn on the hot tap, get some soap on your hands, lather up under the cold water coming out of the hot tap and just when the water starts to hint at getting warm, you’ve finished.  So who needs hot water coming out of a hot water tap?  Not us!  We get by and pull together as a team.  Except Tom the cat who is aces and skill at rat catching but is bugger all use as an electrical multimeter.

It was good news hearing that you wouldn’t need any further treatment for the cancer.  If your gall bladder is causing mayhem get it out quick, don’t wait.  Push for it.  The drug trial is cool but it sounds like you need to get comfortable and start getting on with stuff.  The invitation is still open for visit once the gall bladder situation is sorted, meet Tom the cat, the alpacas and see Eva & meet Sam, but might want to wait a bit though if you don’t enjoy flannel baths.

Mark xxxx

I did actually laugh out loud when I read about trying to use up one of Tom's nine lives, thought MrC was going to have a heart attack at the unexpected explosion of noise.

What's your favourite bit been of the saga of my brother's emails from down under? (he's got his own page on my blog and everything!) 

Leave me a comment so I can lol all over again

And as always Mark.....
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But then life would be boring........

Alert - post has been updated with the latest developments 

It's happened. The all important Oncology appointment I've been banging on about for over three weeks, to tell me what trouble Ted the Tumour a.k.a kidney cancer has in store for me.

I have the news....at last!

We rolled up at 3pm for our appointment and true to form the clinic was running late, but hey, I had my Kindle and I don't mind sitting and reading. But I was feeling sick to the stomach and extremely stressed out. On the outside cool and as calm as can be. On the inside my brain is doing somersaults and my stomach wants to join the circus too. MrC can't sit in a chair for very long, so he's standing, which means pain, which means he's stressed, which means I'm stressed.....you get the picture? Yep? One of those infinity steps where you just keep on going

Eventually called in and the consultant was lovely, you could see immediately why appointments were running late. Nothing was too much trouble, he explained everything and I felt like he actually gave a sh*t about things, which is more than could be said for my urology consultant.

So what did he tell me?

Have you ever heard of the Lieberman scale? Nope me neither (I'm sure I've still got it wrong as I can't find it properly on the internet) Broadly speaking it takes into consideration all the factors (size of tumour, location, lymph nodes affected etc) of the disease, gives it a score and this tells you the likelihood of a recurrence.

My more intelligent readers, please help me with the spelling and correct my explanation if wildly inaccurate. 

The scores are 0 to 24 (I think) and mine is 3
0 to 2 is low recurrence with a 3% chance, 3 to 5 is intermediate with a 20% chance of recurrence. The next one is 6 to 12, high with a 63% chance and so on.

So for me, with a score of 3, 1 in 5 people will get cancer back again ( I think ) in the first year.

However the odds seem better if you turn that around and think 4 out of 5 don't. (See what I did there?)

There was some discussion around my scoring. The original pathologist, the first one on call, gave me a score of 2 when Ted the Tumour was examined straight after surgery. His speciality though was gynaecology. All results are checked afterwards, when they have more time, by a specialist in the field and she changed it to a 3. She is the expert after all and has more experience in renal pathology, so trumps the original report.

Essentially they've given Ted the benefit of the doubt and consigned a free upgrade by erring on the side of caution. And I'm ok with that! 

In real terms this means I will be monitored closely for the next 3 to 5 years with scans and blood tests to see if any other cancers appear but won't be needed any treatment. Yay!

Which means I can schedule Geoff the Gallbladder, a.k.a a very painful gallbladder which makes itself known at every opportunity, to be removed! Right? Well, maybe not, read on....

There is the chance to be included in a clinical trial for a drug called Sorafenib It's been used as a treatment for advanced kidney cancer, where surgery isn't an option, it inhibits the growth and spread. My study though, is to find out how much protection it can give to people who've had their tumour and kidney removed and hopefully lower the instances of a recurrence in the following years.

I will be in one of three groups.
Group A gets the drug for 3 years
Group B gets the drug for a year and a placebo for 2 years
Group C gets the placebo for 3 years

There are side effects, they are however outweighed by the benefits (Bet I don't get the weight loss side effect! I know, I'm shallow) And out of 8 patients, 3 will be group A, 3 in group B and 2 in group C so my odds are good for getting at least a years cover.

However (and there is always a but no matter which word you use) there's a problem.

I need to start the trial by the 13th of June to be eligible. If I have Geoff the Gallbladder out, I need 2 weeks to heal before starting the treatment. So I have a small window for the operation,  between now and the 26th of May , or thereabouts.

 I have a dilemma. Blasted (and that's being polite) Geoff has caused me untold pain and sickness in just the 9 weeks since Ted was removed. I'm in daily pain and discomfort now and really want to have it taken out. But if I can't get the operation next week, should I delay it and reschedule for 6 months time? 

Am I looking at a short term solution by getting rid of Geoff and not being included in the trial, when I should be in it for the long haul and making sure no more little Ted's appear?

At the moment I feel so unwell and can't see me getting better until Geoff is no more. Or should I man up, get back to work and put up with it so I can get on the drugs trial?

I've already been off work for four months, I was hoping to get Geoff sorted before going back. Easier all round with only one period of sick. No more time off, get on with my life etc. etc. Leaving Geoff to fester for six months will mean I not only feel ill, I will have more attacks, be less efficient and then need to take another period of sick leave (which I technically won't get paid for) I've must consider my career too. I want to make sure I've got a job to go back to! 

Don't get me wrong, I'm not going to give up without a fight, because I certainly want my cake and eat it. I've got a week to get a date organised for Geoff's removal so I'll be hitting the phones hard and seeing what I can do.

And it goes without saying I will be following up as to why there was a three week delay in getting the oncology appointment in the first place which has put me under this time restraint. (If you haven't read it the post is here)

I'm talking to lots of people at the moment, family, close friends, people who've been in similar situations. But what do you think? There is a wealth of experience and a lot of opinions out there and I want to hear from you. Don't worry, I won't be holding anyone accountable. If anyone knows me I always make my own mind up! I just want to hear what you guys think.

Things are looking up, ultimately it's great news

Nothing though is every simple in life ................. but then it would be boring

***Update Friday 18th of May at 5.30pm***
First thing this morning I called the drugs trial nurse and basically begged. I'm not a proud woman! I just need some help to make this work and I'm determined. She got the message to my consultant that I want to be included but needed help arranging an operation date. So he's had a chat with my lovely surgeon who I hope will be able to pull a rabbit out of the hat and find me a theatre slot.

Everyone is in the loop, is aware of how important it is and I hope working together can make it happen

Fingers crossed

To the stranger on the train......

Travelled back on the 12.30pm train from Paddington Station from the final of BGT (post to follow, promise!) and met a lovely woman called Alison.

She was in seat over from me and looked half asleep. She'd asked the train manager (it was guard in my day) to wake her at her stop as she'd been awake for over 20 hours.

I offered to do the gentlemanly (or womanly but doesn't sound quite right) thing, my good deed and all that and conversation ensued. I realised Alison must have taken part in a midnight walk. I'd seen a lot of woman, with the telltale shuffle of many miles walked at the station while I bought the mandatory 12 Krispy Kreme donuts (they don't sell them down here and I get lynched if I don't bring them back from every London trip)

When I asked her motivation for doing it, she explained she'd had cancer. I won't go into the details, that's her story to share not mine. But I found her inspirational. Her story was told with uplifting and positive language. She gave me some things to think about, tips on coping, how diet may help. The time sped by. And it was just what I needed to hear.

So this post is a thank you, to a stranger on a train. You made a difference


Reasons to be Cheerful Week 19 - BGT

Time to link up with Michelle from Mummy From the Heart to record and be thankful for the small things which have made me cheerful this week. The premise is even if your week has been absolutely dreadful (and I've had my fair share recently) there are always some little glimmers tucked away in there somewhere.

I try and reframe my 'not so good days' (bad days are banned) and come at them from a positive angle. Michelle has done exactly that in her post this week, I urge you to click here and take a look to show your support. I feel she is in need this week.

My week has been dominated by two events, both big events, things to be cheerful about. I'm looking forward to both, but for very different reasons!

My oncology appointment has finally arrived! Two weeks after learning Ted was cancer, I'm seeing an oncologist next Thursday......at last! All that whingeing and chasing (plus a bit of taking control and complaining has paid off) I won't dwell on what I went through, my posts over the last couple of weeks say it all, but at least I have it.

I can look forward to understanding what the next steps are, take control of my life a bit and plan. Anyone who knows me, knows I like a bit of planning!

But onto the second event.

I love my job

I love my company

I love Red, who is my companies chief values officer (yes this is picture of him, let me know if you want to hear more about him, he's lovely)

I'm so lucky

I'm going to the final on Saturday of Britains Got Talent, courtesy of Red!!! I won the tickets in an internal works competition and I am so happy I could burst! Something to look forward to, something a little bit exciting and different, something to brighten up my recuperation.

I'll admit, I'm very nervous, it's a long way to go and I still get tired very easily, but sod it!

Train tickets are booked, I'm travelling up on Friday night and staying with Amy so I can rest up during the day. I've not been to her new place yet, so that's something to look forward to too. Plus I may get to meet her wonderful housemates who have been looking after her. A chance for me to say thank you in person.

So all in all Fay is a very happy bunny!

PS Pudsey to win!



E-mail from my Brother: Overload, Paddington Bear Stare, Record Breakers and Letter v Email

Hi Fay,
Mark here with your usual load of nonsense.  You may have noticed I commented on your blog this week about why your referral letter hasn’t been sent out via e-mail.  E-mail overload was my point and it’s why I believe if you want to get someone’s attention send them a letter.  E-mail is a couple of notches up from a Tweet, a letter is a couple of notches down from having words chiselled in stone.

I believe there’s a sliding scale of importance for the written word depending on the medium it’s presented on.  If the Ten Commandments were on a Post-It note I don’t think many people would’ve taken much notice of it.  Likewise if the American Declaration of Independence was an e-mail I’m thinking it might have lost something if it had been sent from a company e-mail account and had these words at the end; 

“Any views or opinions presented in this email are solely those of the author and do not necessarily represent those of the company.”

Here’s e-mail overload … Juliette’s Hotmail account currently lists over six thousand unread e-mails which must mean Norris McWhirter is going to come back from the dead to give her an entry into the Guinness Book of World Records.

Actually now that I come to think of it I’ve just half remembered Norris McWhirter having a bit on Record Breakers where Roy Castle would take a microphone around the audience and the kids would ask Norris questions about who was the tallest-what-ever and who sat the longest in the bath full of so-and-so and Norris would answer and everyone would clap like he was amazing.  Thing is, I don’t actually remember there being some sort of check on Norris’ answers.  He could have been making stuff up; 
“Yes, well, the first person who climbed Mount Everest without oxygen is of course Papa Smurf who did so via the North West route on the 20th August 1980.”
The audience applauds, Roy Castle smiles and nods.  Nowadays the kids would look that stuff up on their iPhones and start calling bullshit.  Innocent times.

Anyway, I also read this week that you’re not sleeping well.  That’s understandable because you’re worried.  Do you know what you should do?  Top tip; this totally works, expect to see it advertised on the sidebars of popular websites.  
“One weird old trick for getting to sleep.  Click here.” 
Etc.  Ready?  What you do is you get really drunk until you pass out.  Simple.

You ever see the film City Slickers?  It’s got Billy Crystal in it, came out in 1991.  The secret to happiness in that film was learnt by Mitch Robbins (played by Billy Crystal) when he totally committed himself to wrangling some cattle.  In that moment his mind wasn’t thinking about the future or the past but on 100% the present.  It’s what Buddhist monks do when they meditate and it’s what psychologists call “mindfulness”.  You don’t even have to go out to Tibet or anything to learn it, you can totally learn that shit from Wikipedia.  I’ve found though that chemical mindfulness is getting really drunk until you pass out though.

Your choice of course.

But make sure you rent City Slickers.  Don’t rent City Slickers II: The Legend of Curley’s Gold though.  The only message that film has was this was to be the first in a long line of crappy roles for Billy Crystal until the role of Mike Wazowski in Monsters, Inc came up.

So, much like Billy Crystal in the 90s this e-mail is short and may not have been the usual barrel of laughs but chin up, Paddington Bear hard stares all round for the NHS, high five a Buddhist monk and/or Jack Daniels and see what next week brings.

Mark xxxx

P.S. I’m still waiting for a good medieval myth to investigate so next time you get a bad night’s sleep come up with something eh?

He may be writing these to cheer me up (which are so totally working by the way) but my brother has a point about the importance of e-mails versus letters. Or is he just old fashioned? What do you think?

Meal Planning Monday w/c 7th May

A very quick post today! It's a bank holiday, I'm all out of whack and still feeling the effects of champagne from dinner yesterday. But Meal Planning Monday is so ingrained, it didn't feel right leaving it. I enjoy looking forward to the meals I'm going to be having and linking up with At Home with Mrs M

Here you go! My looking forward to meals are:

  • Soup and Bread
  • Salmon Risotto with Asparagus
  • Baked Potato with haddock and leeks
  • Sausage Casserole
  • Chicken Casserole
  • Pasta and Sauce (packets, left in cupboard from hospital stay) with Salad
  • today's meal was leftover meatball casserole
So there you go, short and sweet, simple and tasty. All is well in the world now I've written my list

Don't forget to check out other planners over at Mrs M's and why not give it a go, promise it saves time and money!

No point sweating the little things.....

I can't believe its another sleepless night. Technically is it a sleepless night if its only 1am? Has enough of the night elapsed for me to pronounce I'm having a sleepless night? I've been in bed since 10.30pm trying to go to sleep, so I suppose so.

That's three and half hours of doing stuff other than sleeping (and not what you are thinking either) I caught up on twitter, read for a bit, back to Twitter, then resorted to counting sheep. Didn't work, so tea and biscuits it is.

Ironically what keeps rattling around in my brain is the fact I've committed to going to the gym tomorrow ... umm actually that's today and think I'm going to be too tired. I need to get the house tidied and cleaned in the morning and that will knacker me out. No-one else will do it (MrC is ill and James is off to Bristol for the weekend) so it's either live with the dog hair rolling around on the laminate floor like the tumble weeds you see on Road Runner cartoons or do it myself.

Plus parking at the gym will be a nightmare so walking there would be a better option. But again as I'm still building up my strength I will be knackered by the time I get there and not be able to do an actual workout. Not that I'm planning to do very much. I've arranged a one to one session with the trainer to put a programme together which will match my level of fitness (very low post kidney removal and kicking #tedthetumour out) and build up my stamina.

Altogether I'm starting to talk myself out of this going to gym malarky. Maybe its too early after surgery. I was given the all clear to go, but what if I'm not actually ready? I dunno, shall I give it a miss?

Let's be honest, come on Fay, be honest to yourself. The gym isn't what is bothering you. It's The Cancer which is at the root of this sleeplessness.

The more time goes on the deeper my thoughts go, no sooner have I parked one (to deal with later) another pops up.
I'm scared. Why am I not dealing with stress very well? What's going to happen next? 

How will my family cope if I get worse? How will we cope with no money if I can't work? 

Where has my life been going? What makes me happy?
What is the point of things?

What's the rest of my life going to be like? What am I going to actually do with the rest of my life?

How will this change me?

The list is endless and I don't have the answers. I don't think anyone really does.

I'm hoping by writing them down I can properly park them, I don't need the answer's straight away and to be fair I may never get them all sorted. Even if I did, would it make a difference? Things change, my outlook will as I go through this section of my life. How I answer a question now may be different to how I answer it in six months time, six weeks or even six hours.

I will change

I just need to make sure those changes are for the better, that I learn and grow.

"The only difference between a good day and a bad day is your attitude." ~Dennis S. Brown

I better get my arse back to bed. I've still got a house to clean in the morning and gym session to go to. No point sweating the little things, it will all work out in the end