One word which means a lot

I was due to get my one year all clear last week (notice the positive language there?) but the conversation didn't go as planned.

I get checked every three months because I'm on a drugs trial called Sorce, and the doctor usually says, 'scans have gone to be checked, but looked OK to me.' This time I got just a 'they've gone to be checked'. I asked questions as she had viewed them, but the same answer and nothing else forthcoming. Add to that I've low phosphorous levels, which need rechecking and alarm bells were ringing in my head.

The plan's for me to take supplements, then another blood test, to rule out (or confirm) the problem lay with my diet. Now, I may not be one of the slimmest of specimens, and eat more chocolate than I should (it is a bean, so one of my five a day surely?) but I do have a varied and mainly healthy diet, thanks to Slimming World. I don't feel my diet is lacking in any nutrients (it's found in chicken AND bacon for goodness sake!) so I suspect something a little harder to fix.

Plus a little bit of googling later, my suspicions are confirmed. I'm not alcoholic (last drink was probably Christmas) and my seemingly life long membership to Slimming World was testament to not being anorexic (although MrC did say I could be a not very good at it anorexic. That was his attempt at humour, because let's face it, we both had something more serious in mind)

So no scan results + suspect blood results = worried me and MrC

And that feeling drags you down. You can't do anything about it but wait and see, be positive, think on the bright side and all the other cliches. For me each day was me trying to be Piglet when inside I was Eeyore.

You hope for the best, but are really planning for the worse. Would it be more surgery, recuperation, time off work, stress, financial constraints, you name it, it ran through my head. And there was nothing I could do other than take the supplements and carry on.

However, a week later than planned, I've gotten the call I wanted. The all clear. Didn't hear much else of the conversation. The low phosphorous is still an issue, one to be resolved, but taking the scan out of the equation, means its a nothing, a blip, something I can deal with.

I'm all clear and have been now for a year. That's the important bit, the rest is inconsequential and will be dealt with as and when.

I'm all clear

Clear

 

A brilliant word, one to cherish, savour and enjoy.

 

And to celebrate I'm republishing my celebratory picture from last year, my happy picture.

 

Enjoy!

 

I'm linking up with Michelle at Mummy from the Heart, check out other Reasons to be Cheerful

 

 

Posted with Blogsy

30,000 Tweets....

Please note : Before you read this I need to let you know, I've called out a few people who follow me, just a few. I love all of you, please don't be too upset if I've not included you. The post would have been just too long otherwise :)**

I've reached a milestone of 30,000 tweets, not much for some, but a big figure for me. But what does that number actually represent?

I've been on Twitter since May 2008, but it took until I got my iPhone late 2009 before I really 'got into' Twitter. Before that, it was weekend and evening's only and then only when I thought about it.

If I'm being honest, back then, I used it more to figure out
a) where my boss at the time, @Breenster was, and more importantly
b) what sort of mood he was in before I asked a question !!??

People I mainly followed were work colleagues. I used to get a bit star struck when visiting another site and realising I was sat near to the great and good of twitterati company fame. I bumped into @peewii in a hotel corridor and realised who it was from her avatar. First and probably last time we met face to face!

It was a bit of fun, a novelty piece, like looking through a window onto someone else's view of life.

It changed for me though when I was told I might have uterine cancer, the treatment of which was a total hysterectomy. I started this blog and through Twitter I 'met' and made friends with people who helped me through it. For the four or five months I was ill and not as mobile as I would have liked, Twitter was there with a supportive tweet at silly o'clock in the morning and a virtual hug on the bad days. @cleanless @grealis and @alittlebit are just a couple of tweeters who come to mind.

Through Twitter I've learnt so much. The best iPad apps to use, the greatest sites for funny pictures, amazing people to follow, great tips on reducing clutter, recipes, new foods to try, inspirational quotes (the one on my header is from @inspirationguy)

I've watched programmes like The Apprentice, Britains Got Talent and The Voice, not to mention important sporting events like England matches or tennis, and feel like a bunch of friends are in the room with me. The observations make me laugh and I feel part of something bigger.

Three years ago, although alone on New Years Eve, as MrC underwent surgery, I wasn't lonely.

@peter_agambar had faith in my son from a speculative tweet last summer to give him a job, landscaping the garden (Bless him, he started on one of the hottest's days and got sun burnt. The second day it poured down and was soaked through to his skin!)

I'm now more in touch with what is going on in my local area from the guys I now follow (and keep planning on meeting up with one day!) and more upto date with what's going on in the world in general, thanks to the people who tweet links to important events (The London Riots, Gaza, Whitney's death, who won the Apprentice to name but a few)

I joined Slimming World last year and now have a support group of SW devotee's. Who needs to go to a meeting when these wonderful people are there for me at the touch of a button? Want to know the syn value of something or need talking out of eating that chocolate bar, turn to twitter. (@BeeBeeCavendish @Anjeebaby @Vicki_Harrop @fiannah@Sulalee1 and many many others) Want to plan your meals to help keep on track? Meal Planning Mondays from @madamding has hit the spot! 

Even some of the spam bots have made me smile! Hello 'marmite bot' and the 'spelling' bot is very useful too!

When @Churchyc4 moved to London she found the easiest way to keep in touch was through Twitter! (Does that make me sad!? Hey, it works for us) It was fun and we know what sort of day each other is having.

I've been introduced through friends and friends of friends to new blogs which have made me laugh, made me think, inspired and made me cry. I've read about birth, death and everything else in between.

I talk to people from the other side of the world, people I've never met, but feel connected to. (@JaneofAustralia is just one who springs to mind!)

Reasons to be Cheerful (#R2BC) from @michelletwinmum has enabled me to share my good days and brush over and forget about the worst of the bad ones.

My #tedthetumour this year has been interesting to say the least and new twitter friends have been there for me too. @woolhatwoman @MrsBorderreiver @laurenbigeejit @LizAnne_x @PhilippaDavey @SAHDandproud @TheBoyandMe @amumonamission @TheBoyandMe @Kateab @MammyWoo to name just a few.

@dorkymum wrote a post recently called Twitter is Like If you haven't read it, please do because it sums it up beautifully. I'm lucky to have that room in my house

The last six months have been hard, the hardest I've ever had to deal with. And I won't lie to you, when I say things are still difficult. However Twitter has helped me immensely. It's entertained, informed, supported, counselled and listened. It's made me realise there are always people worse off than yourself and be thankful for what you have.

That's where 30,000 tweets have gotten and given me. They represent friends and a supporting network and here's to the next 30,000

What does Twitter give or mean to you?

** Maybe if you weren't named this time, you'll be included in the 50,000 tweet posting!

Reasons to be Cheerful week 24 #R2BC

It's linking up time with Michelle from Mummy from the Heart for Reasons to be Cheerful.

I'm sure everyone knows already but I had the results from my first body scan and it came back as all clear. I celebrated with a post full of smiling animals which I know is silly, but it made me laugh when I compiled it.

This also meant I was eligible to take part in the drugs trial. I'm going to be having regular scans and bloods test, which means any instances of a recurrence will be found early. Got to be good!

I've started a new blog called My Clinical Trial (http://fay-ze1.blogspot.co.uk/) to see me through things. Glass Half Full has helped me through a lot over the last 18 months. Am sure getting things out onto virtual paper will help with any side effects!

And today .....big drum roll..... MrC and I actually managed to get to the cinema. It's a rare event and it was good to get out together. It's not that we have ties like kids to keep us from going out, but just recently one or other of us have felt too poorly, we just couldn't sync up. But today was the day. Yay! Doesn't take much to cheer me up

I've still got a way to go to get my confidence back, but I can see that it won't be long now.

Guess what?

Yes, you guessed it. My scan was clear. No hiding Ted's! 

I don't like the dark, but I do like light at the end of the tunnel

I get some important scan results at the hospital tomorrow. They'll tell me if I've any other little Ted's hiding away. All weekend I've been thinking about it. I've come to some conclusions, stuff I know about myself. I like lists, so I wrote one

• I like planning things, to have something to look forward to, which don't include a hospital visit or operation.
• I like organising events and people.
• I don't like planning things and having back ups in case 'I'm not upto it or appointments will get scheduled'
• I like absolutes, I like to know the process, what's going to happen next. I like being informed, the energy of being in the know. Not the bleak and windy wasteland of ignorance.
• I like to know where I am and what is expected of me, not lets see what happens
• I like to control myself, not events control me. I especially don't like emotions for the same reason!
• I enjoy being self sufficient and strong.
• I dislike relying on other people.
• I enjoy feeling successful in who I am and what I do.
• I don't like feeling guilty for putting family and friends through this too. If I could manage alone I would.
• I enjoy order, but feel the last few months have been chaos. A chaotic mass of emotions, events, appointments, pain.
• I like goals and achievements, things to aim for.
• I don't like the dark but I do like light at the end of the tunnel

I can see that light, I'm imagining getting back to work soon. And I need a goal, something to aim for, something to focus on and get me fighting fit.

I did have plans for this year, things I was going to do. 2012 was the year I was going to reach my goal weight amongst other things. Over the weekend though, while I wrote my list I resolved to put back into my calendar an event I'd talked about back then. I'd decided to take part in the 30 miles St Luke's Hospice Midnight Walk. I completed 13 miles last year as part of my recovery, enjoyed the challenge and wanted to up the stakes.

However as much as I like a challenge, 30 miles is a bridge too far (plus MrC put his foot down) I even think 13 miles will be too much, as I'm still struggling with two! But I've registered for the 7 mile route, on the 21st of July.

I'm sure I'm going to be told good news at my appointment but even if it's not what I want to hear, I now have a goal, something to look forward to, a way to improve fitness and lift my soul, to raise money for a worthwhile cause.

My blog header has the following, it's tag line

Tackle each challenge with a strength of purpose and an expectation to succeed.

Please click My Just Giving Page and help me take those steps (literally) to bring me out of the tunnel and back into the light and put some order to things! There's nothing like money to motivate!



 

This week is all about rats!

You want the next instalment? You got it!
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Hi Fay,

How’s it going?  Hope your arse has un-numbed itself after your two hour wait for your drug trial.  That makes you sound like Mr Big in an international bust but you know what I mean.

Not much to report this week except of course we’re still waiting for a new bathroom.  We’ve got hot water now but it’s been disconnected from our old bathroom so it can go through to the new one.  The new bathroom is still waiting for the floor to be tiled before we put in things like a toilet and sink.  We’ve got a shower in now though.  It’s not plumbed in yet.  The new bath is still in bubble wrap in the garage too.  Getting a bit sick of flannel baths now, almost as sick as you are reading about flannel baths I reckon.

Our fencing guy is still replacing the old fencing and the place really looks good now.  Where once some rickety old wire and wood edifice used to be is a proper sturdy three rail wooden fence.  It’s added millions to the value of the property.  I reckon we could sell up now and move to a mansion and be fed peeled grapes by live in grape peelers.  But we won’t because there’s still no hot showers at the house and buyers tend not to want places where they can’t get themselves clean without a resorting to the same wash routine as a car.  Warm water, bucket, soap.  If it’s good enough for a Rolls Royce surely it’s good enough for you?  Chamois leather is optional of course.

I go out and have a chat with our fencing bloke every now and again and I reckon we’re both glad of a bit of conversation.  Subjects we’ve talked about; hunting using infra-red night vision goggles, alpacas, how to hang a gate correctly, the weather, using a throwing knife to kill a rat, his wife’s grandmother who was born in our house, chickens and gas bottles used for barbecues.  I go out in the morning and never know where the conversation will go.  I had a chat to him about rats again this morning.

We’ve been woken up with the sound of a rat in our loft for a couple of nights.  Not just running around, but the sound of clawing and gnawing.  Try waking up with the sound of a country rat trying to get through the ceiling above your bed.  Now imagine trying to ignore it and get back to sleep.  Juliette is a vegetarian and an all round peace loving hippy but when it comes to rats coming at your face while you sleep, rat paws spread out like the four of clubs and eyeball-chewing teeth going like a chainsaw …then its time to terminate the rats with extreme prejudice.  Flamethrowers aren’t available over the counter so I bought a trap.  Just the one trap, but it was the most expensive and up to date.  Rather than get something that wouldn’t look out of place in a Tom and Jerry cartoon I got this one that basically imitates the jaws of a Tyrannosaurus Rex.  It has serrated edges and, more to the point, offered the benefit that when a rat is caught you can take the whole thing out to where it needs to be disposed of (miniature Viking burial ship ready for burning after being pushed out from the coast, funeral pyre complete with little rat sized Darth Vader hat, the ditch that runs along side our property etc) and you can press the clean end, the jaws open and the rat drops out sans blood, brains and guts that you get with a traditional trap.  The instructions say you just have to wash it afterwards in warm soapy water and it’s good for the next one.  Warm soapy water?  In this house?  It’s a run under the outside tap for you me-laddo, what do you think we’re made of luxury?

Anyway I primed it with peanut butter (all rodents love peanut butter apparently), tied a string around the loop at then end so I could pull it in afterwards, set it up in the loft and left it to do it’s thing.  This morning I went up into the loft to check it and pushed open the hatch with all the enthusiasm of an unnamed extra in an Alien film.  It’s dark up there and when every one is out, no one can hear you scream.  I pulled the piece of string and gathered it up, gathered it up, gathered it up and then I got to the end.  There was no trap, the string was broken!  Or had it been cut?  Cut with tiny rodent teeth.  Why would they cut the string unless they knew!?  Suddenly it was very dark up there and my face felt like it was a shining beacon of rat deliciousness.  They could come out of the dark and take a bite of my cheeks before I knew it.  What was that noise behind me?  I turn.  There it is over in the other corner!  I turn.  The rats would roll that face flesh around their tiny rat mouths like it was butter.

Luckily I’d only put the trap within an arms reach of the hatch so I could just lean over and see I’d got one.  I took the trap outside and not wanting to get my shoes muddy I dropped the carcass onto a fence post for later disposal.  Our fencing guy found it a bit later while I was out at the shops buying lavender hand cream and a tuning fork for my lute, so he slung it in the ditch for me.  I wasn’t really buying that stuff, I just wanted to highlight the puzzled look on his face as to why someone would trap and kill a rat and then not just get his shoes muddy disposing of it.  In my defence I’d like to say that when you haven’t got a f*cking shower or a bath you kind of become averse to the Somme levels of mud and I was wearing my frigging Crocs again okay?!

Sam's okay again now after the virus thing.  Hope you are all right on those experimental drugs.

Love,

Mark xxx

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Do you know what? As always....

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Treatment Option - as a person please

I've had my first drugs trial appointment and things didn't go smoothly.


Mum and I arrived at the unit detailed on the card five minutes before appointment time. I'd researched where it was beforehand as I wanted to keep my walking to a minimum. I'd only had surgery 9 days ago! Reception didn't have my name on the list but didn't seem worried. After ten minutes I started to think something had gone wrong, but my fears were allayed when my cancer nurse who I'd seen just once before, walked in. But she wasn't there to see me, but for a meeting!

I showed her the card, hand written, her hand writing and she couldn't apologise enough. She knew straight away she'd made a mistake. We arranged to meet actually down at the oncology unit, she'd be there straight after her meeting.

So off we toddled to figure out how to get there. My hospital is a bit of a maze (to say the least!) has lots of floors, some wards and units can only be reached from certain banks of lifts. The main entrance is in level 6 for goodness sake! It's a maze I tell you! But we got there and took a seat.

An hour later we're still seated. I've been people watching and listening under the guise of 'reading my kindle' My main observations? Why wear socks with sandals? No-one picks up litter or throws away their coffee cups and some people look so much sicker than others :(

After I'd run out of people to see and my bum was getting sore from the chair, I decided to see what was occuring and went off to reception to explain my predicament. A very friendly chap called Martin made a few calls before visiting me at my now chair of pain to say my nurse is AWOL but they're still looking. I did however get a visit from her opposite number who apologised and sounded like she meant it. She was going to do a bit more ringing around and come back to me. Five minutes later, my nurse was there, her meeting had turned into 90 minutes not the 10 she'd expected! She was extremely apologetic and rushed me through to the research unit.

So two hours after my appointment time, I was sat finally having blood removed and blood pressure taken and chatting with my consultant. At last! I've got a CT scan booked on Friday, the results will be rushed through and as long as they are ok (I don't have any other cancers hiding away in my bowel, liver, pancreas etc etc **) I will start the drugs on Wednesday.

Although things had gone wrong and took longer than expected the way I was treated made all the difference, as a person. I was kept informed, the people I spoke to we're friendly, empathetic, apologetic but more importantly sounded like they meant it. Things go wrong, it's how it puts right which makes the difference.

I can see light at the end of the tunnel, the next step will be getting back to work!

** Notice how I brushed past that point? It's quite a big thing, to get the confirmation I don't have any secondary cancer's lurking. I'm confident it's going to be ok though, just a formality, however will feel better after Tuesday!

E-mail from My Brother: Breakouts, Hot Water and Bio Hazards

The next instalment of mails from my brother. As I was being looked after by my parents following the operation, I got to see my brother, niece and nephew via Skype on Friday. Yes, they are real, he hasn't made them up for comic effect! 

But onto the all important update. I sent him a mail from my hospital bed titled 'I'm Alive', I got this back

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Hi Fay,

How are you feeling?  Still sore?  That’s to be expected I suppose but you know, still really crappy.  How can I cheer you up?

So we’ve got hot water now.  Hurrah!  However it’s piped to the new bathroom and all the water has been disconnected from the old bathroom.  The fact that the new bathroom hasn’t got anything fitted into it means that we still can’t have a hot bath or shower.  This is like having a new bank account with loads of money in it but no cash card to access it.  Sometimes I go into our new bathroom and mimic having a shower where the new shower is going to go.  Then I go and have a flannel bath in the Icehouse and shiver myself clean.  I had to break the ice on the alpaca’s water this morning it’s getting that cold at night and it’s really getting hard to justify washing.  Surely if God had wanted us all to be clean we’d be sweating Timotei? (I read this bit out to Mum, I thought she was going to soak through her Tena pad)

But the workmen have been working hard.  I joked this morning that with the sound of power tools coming from our house coupled with Eva’s loud and persistent whining break downs because Sam has touched her unicorn convention she’d setup in the living room passersby must think we’re filming the next Saw film or something.

We’re also at the same time as doing the bathroom getting our old fences replaced with brand new ones.  So far we’ve only had two alpaca breakouts. Contrary to what we were told about alpacas herding tendencies and wanting to stay together and being timid and all, what I’ve found out is that they really don’t give a f*ck about home. First chance they had to get out and they go all Shawshank Redemption on us.  They were out of our place into the farmer’s field next to us quicker than you can say “liability damages”.

This field was about fifteen acres and me and the fencing guy ran after those alpacas like a pre-history cavemen chasing down deer.  Then we chased them back up the field. Then we chased them back down.  The alpacas were like flicking the alpaca Vees over their shoulders at us and making alpaca laughing noises and basically having a really good time.  They run like coiled springs in a mattress popping competition.

We tricked the leader (Peter) into coming close with some alpaca pellets and then got him in a headlock.  On went the alpaca harness before dragging his sorry arse back to chokey like the criminal he was. Where Peter went the others did too so they all came back eventually. Then they got out again.  Vee flicks, laughing, trickery, back in you go. Fool me once, shame on you.  Fool my twice I’m getting my longbow.

I like to think me and boys bonded over their breakouts. When I go outside now I do the one handed finger point to my eyes and back to them to show that I’ve got my eyes on them. I feel they respect that.

Tom the cat has broken out at least once everyday of his life. He goes and has a sh*t on the field opposite which I feel is both necessary and is life affirming. We used to have cats that would p*ss in the spot where the cat litter was because I was currently cleaning the cat litter out and they just did not care. They couldn’t wait for me to finish, they just squatted on the floor and had that cat expression like they were trying to work out which day of the week Christmas was this year based on what day of the week last year’s was and whether it was a leap year or not. Tom does not sh*t where he hunts.

Sam hasn’t been to well and he’s still not right. Juliette took him off to the doctors last Sunday and he came back with a little sample tube to take some poo into a pathologist lab. I waited until he next filled his nappy, scooped up some of the stuff that looked like peanut butter, screwed the lid on the tube and popped it into the back with the big biohazard warning on it like I was transporting Bird Flu or something.  I dropped it off at a path lab on the Monday and because no one was around at reception I couldn’t help but feel I was a gnat’s chuff away from a Jackass prank. When was the last time you bottled some sh*t and dropped it off into someone’s in-tray?  Okay, so maybe you do that a lot in your capacity as a cancer patient. For me going all Gillian McKeith is a new experience.

Since being ill Sam’s taken to holding food in his mouth like a gerbil waiting for winter. He eventually spits it out down himself but I’ve taken to putting hand under his chin and telling him to spit stuff out. This saves time and wet wipes. However with the builders here I did get up to dispose of some chewed chocolate digestive that he’d spat out, scooped up a nappy at the same time and met the “triangle of puzzlement” gaze from the builder who’d come to ask a question. The gaze went from my face, to the nappy, to the handful of chewed chocolate digestive biscuit and back to my face. His expression said “urgh”.  I had an urge to lick the biscuit.

So chin up and all.  Hope you feel better real quick.  Take the drugs and rock on.

Love Mark,

xxx

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The drugs are working well, hope Sam gets better soon and as always

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

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

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

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...'

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

I shouldn't have to do this, but what do you think?

Not sure how to feel at the moment, so instead I'm going to write this post and see where it leads me. What do you think?

It's been a week since my Urology consultant told me #tedthetumour was a grade 2 semi-aggressive cancer tumour and my case was being referred to Oncology. Since then I've not heard a thing, nada, nothing, nowt. Is this usual? I don't know. Is it doing my head? Oh YES!

But life goes on.Today I had a consult with Mr Gallbladder doctor, to talk about removing it. I knew it was going to have to go at some point, because when I had the ultrasound on the 1st of February, the senior radiologist told me so. Maybe it wasn't her place to, but I think she was trying to take my mind off the fact they'd found ted on my right kidney at the same time (I still can't believe how lucky I was to have it found by chance)




But of course #tedthetumour took priority when we all started talking about surgery and the poor gallbladder took second stage ( but the forefront since surgery as I've had a couple of very painful attacks in the last 7 weeks) And although a private Urology consultant and my GP both agreed it made sense to take the gallbladder at the same time as my kidney, my NHS Urology consultant thought otherwise.




So here I was sat in the very nice consulting rooms talking to a very nice Mr Gallbladder doctor about the options. His next steps will be to speak to Mr Kidney Doctor as he conducted the last surgery to find out the lie of the land (or my abdomen in this case) and also to liase with Oncology about any treatments they may or may not have in the pipeline for me. He didn't want to compromise any planned cancer treatments as they take priority. All made sense.




But he can't do anything, we are left hanging.It's been a week, 7 whole days since I was told #tedthetumour was cancer but I still don't know what the next steps are. Oncology haven't contacted me.




I visited the MacMillan Cancer centre attached to my hospital, straight after the appointment to see what they thought, is this usual? It sounded wrong to me, but what do I know, I've not been through this before. I'm so glad I did. They work closely with Oncology (but of course) and they went off for a chat and discovered it hadn't even been referred yet. No wonder I hadn't been contacted.




They hadn't received the referral from Urology. What the hell? A whole week wasted.




How long would I have been waiting if I hadn't asked the questions?




I rang Urology and found out the letter, the next link in the chain of my recovery, was on a desk waiting to be sent. The medical secretary explained she was covering for someone on holiday, someone else was on maternity leave and the consultant she worked for was only just back after breaking his leg, which is why things had been delayed. It was being put in an envelope and addressed as we spoke.




Do you know what? I appreciate her honesty, but I just don't care. All I can think about is how long would that have been sat on a desk if I hadn't called. And why a bloody letter? What about e-mail? These are internal departments at the same hospital. Why are we relying on paper and snail or internal mail nowadays? This is the same department I posted about here which delayed my operation date. I'm starting to see a pattern.




So thinking about it maybe I shouldn't be surprised. Maybe its my fault for expecting too much. For expecting empathy and thought about how their actions affect people. Again I'm just a patient number.




As I said at the top of the post I didn't know how I felt but I've come to the following conclusions after writing, editing, deleting the swear words and rewriting ;




It would be very easy to be angry and annoyed. I can waste time and energy (energy I've got precious little of) ranting about it, looking at someone to blame. But it won't change what has happened. I need to look past this.




I need to highlight it to the trust, not to get anyone into trouble, but so they can look at improving their processes.

And be grateful I made the decision to speak up today, ask questions and chase. I will be doing more of it.




I shouldn't have to do this but what do you think?

 

It's 3 o'clock in the morning.....So what?

It's 3 o'clock in the morning.


I can't sleep
I've just been out to buy some chocolate milk, no idea why, I just fancied it. Very proud of myself for getting out of the house without waking MrC and even Fritz kept quiet (Although I was a little concerned when his tail wagging was banging up against the door!)


I tiptoed out of the bedroom with trackie bottoms (classy) and trainers in hand. Slipped the tracky's on over my pj's, big coat on (to hide the fact I'm wearing no bra) and I'm off.

I don't do supermarkets at silly o'clock very often, but my god it was weird. Loads of staff milling around filling the shelves, whizzing around on trolley things cleaning the floors. It was definitely 'staff are king, long live the king' as I had to dodge out of the way of them instead of the other way around. Mind you they did outnumber the customers in store......by a lot!


Grabbed a bottle of creamy banoffee pie milkshake (which I would recommend if you see it on the shelf, very creamy)  and a bag of giant buttons (as an after thought) and out was out of there and back home in 15 minutes flat. It would have been sooner, but I came upon a herd (yes a herd!) of deer as I drove back. There were at least 20 deer milling across the road as I came out of the car park. I'm not sure who the most surprised, me or them. They darted off pretty quickly, but it was an amazing sight.


But this is all fluff and small talk, I know why I can't sleep. Today (as in Tuesday) I'm seeing the consultant for the biopsy results for #Ted the Tumour aka the nasty 90% chance cancerous tumour on my right kidney. 


It's been an incredibly stressful few days leading up to this and I've really been worrying about it. But I've finally realised, its no big deal.


The best thing he can tell me is, 'it wasn't cancer'


The next best is 'it was cancer, its now gone and we will monitor you for the next five years'


The next best best thing is 'it was cancer, its now gone but we want to give you some treatment like chemo to make sure we got it all'


That's it. So what?


What have I got to worry about? The worse case scenario means it will take me a little longer to get back to work, so what? More time to get better acquainted with my hobbies. Yes okay, I may lose my hair. I've a haircut booked for the weekend, if I'm going to lose, I might as well be brave and change what I've got (My hair style hasn't really changed since I was 18. Sad but true fact) So what?


So I thought, as I was awake, I'd drunk my milk and eaten some of the buttons (who am I kidding, I've finished the whole packet) I'd share with you my 'so what' moment

So after that epiphany I'm back to bed (although I do feel a little sick now) with Pink's track ear worming into my brain! 


Can you think of any other 'so what' statements I can add to my list? And also help me figure out who sang the lyric in my post title, its doing my head in!?