Dandelions, Buttercups and Daisies

Not been the best of week's in our family.  The news came through that Joy's cancer has progressed to stage 4. Sometimes a little bit of knowledge is a dangerous thing and I've been struggling with the news.

I know I'm guilty of overthinking, so I've been trying to keep busy and engineer things so I'm not alone. But my poor dog has felt the brunt, as I was reluctant to take him out for a walk, my best (or worse) time for thinking through problems.

Finally bit the bullet and took the poor canine out, determined to not cry, determined to just enjoy the moment. The sun was out, the dog was making me smile with his enthusiasm for being out and sniffing everything in sight.

I stayed close to home and giving him chance to sniff meant a slow walk, giving me time to enjoy my neighbours gardens. Flowers are blooming, trees have new young leaves and lush green lawns.

I passed several lawns, some beautifully tended and others a little more ragged. When I looked closely, the grass was a little too long, full of dandelions, daisies and buttercups. I remember telling the time blowing the seeds as a child, running after the fairies with my sister. Making daisy chains and arguing over whose was the best and seeing who liked butter by putting the buttercup under her chin to see the reflected sunlight, glowing yellow.

The ragged lawns, edging some gardens, technically were full of weeds. Which to some are an eyesore and nuisance. But taking a step back, I stopped focusing on the individual weed to look at the whole picture; the green grass, peppered with yellow and white flowers and fairies slowly moving in the breeze, was beautiful.

And it hit me. I need to stop focusing on the bad news and look at the bigger picture and just enjoy the landscape as a whole, live in the now and make lots of memories to look back on.

If anyone would like to help Joy a little through this, please take a look at this post

All Clear With Pin Wielding Fairies......

18 Month All Clear

Fabulous words to hear at my appointment today! Great news, I'm very happy. It even helped when I went to Slimming World weigh in and I'd put on five pounds. Just didn't care, didn't give a flying f*ck. The good news today was, I've had the all clear. Again.

It's not without some reservations.

I'm part of the Sorce Drug Trial (click link for details. In my eyes it's a wonder drug!) which means I get regular check ups and looked after really, really well. I've actually been told to stop taking the drug for a couple of weeks, due to concerns with magnesium and potassium levels (aren't they the two elements which in Chemistry lessons we'd set fire to with glee and bright flames??? No idea what they're needed for in the human body, hope I won't be going up in flames anytime soon....)

But also because of damage in my feet. My toes and balls of my feet are numb, they don't feel like they belong to me. And you'd think being numb, you'd feel no pain and be able to wear those killer heels with no problems. Wrong! Heels are killers, but not in a good way.

And although numb, they hurt as well. It's hard to explain, but imagine the start of pins and needles, combined with frozen toes. And remember how it felt to come inside from throwing snow balls and your hands start to thaw out? They smart a bit as they warm through. It's that. But add onto that  breathe taking cramps. You know the ones, which make you sound like a plumber giving you a quote "Shffffff, that's going to cost you ....'  All of that on bits of your body which don't feel like they belong to you when touched to actually check they aren't on fire, frozen in ice and/or with tiny fairies sticking pins in them.

Did I mention a 'favourite' time for this is 4 in the morning? You getting the picture?

Well, that's my tootsies. Most of the time.

Regularly I walk out of my shoes without realising it. Not so bad in the middle of the hallway. Not recommended in the middle of the High Street.  And it's very annoying climbing into the shower still wearing the socks I couldn't feel! Not a great look

Also had to explain to my Danish Doctor what ' No shit Sherlock' meant when he said I may have some damage, which caused a few giggles. 

Back in two weeks, more blood tests and decisions as to wether the damage is permanent or not and if I can carry on with the drug.

However, that's ok. I got the all clear and that's what matters.

Reasons to be Cheerful - Enjoy the Good Times #R2BC

It's been far to long since I last linked up with Michelle from Mummy From The Heart and her wonderfully inspiring Reasons to be Cheerful. I couldn't have gotten through the last couple of years without a positive outlook and silver lining thinking. Reflecting on the past week is a great exercise in keeping sunny and powerful.

I haven't stopped keeping topped up with positivity, just the recording of it. For some reason I felt compelled this week, and I usually go with my gut ( keep the comments about the size to yourself, those of you at the back!)

The weather has lifted everyone's mood I think. My internal temperature control is way off at the moment (its the drugs is my usual lament) Normally I'd be a sweaty Betty (not pretty) but as I'm usually cold, the heatwave is making me just right. I still can't go out in it, still too high risk for skin cancer from the drugs, however it makes me want to start walking again.

Had a fabulous couple of weeks at work, a simply brilliant work conference which has inspired and lifted me. I'm full of ideas to implement and make some changes. It's wonderful to spend time with like minded people and make connections.

I've been told I know everyone, it's not true by the way, however I was surprised by how many familiar faces were there. Plus plenty of new friends to make. All helped by the fact it was held at Alton Towers!

I indulged in my love of exciting rides with wild abandon, forgetting the fact I'm a middle aged woman, getting over cancer! There's life in the old dog yet.

I was also proud of myself on Monday, when it became evident I'd made a big mistake a work. The old me, would have beaten myself up, made myself feel terrible for the rest of the day. However, I sucked it up, and gave myself a talking to. I literally said, forget about it and move on, don't let it ruin anything else. And went on to have a productive, fruitful day and was happy and chipper once home (which certainly pleased MrC who does get the brunt in bad days. But then I think that's in the job description, you're there for your partner no matter what)

And the real reason, the heart of the cheerfullness? It's plainly obvious I'm on the placebo. My drugs trial was designed with three groups, group one which are on the placebo for three years, group two on the drug for three years and group three on the drug for a year and placebo for two.

I'm guessing I'm group three ( I won't know for definite for eight years when the study concludes, but to me it's obvious)

My hair is growing back, my feet are less sore and the feeling of fatigue is lessening. It all means I feel better. There's a part of me, a little bit sat in the corner worried that I won't have the same cover of the cancer coming back now I'm not taking it. But. And it's a big but. I CAN'T CHANGE THAT. So I can't let that dominate.

What will be, will be and the meantime enjoy the good times.

Sorce Trial - reverse placebo effect

Been on the Sorce Trial for a year and I could now be swapped onto the placebo. Not sure how I feel about that.

The trial is a double blind study, so the hospital team don't know either until end of the three years or if I get cancer again. If I should become ill my status is checked & I'm offered the drug if I was in the placebo group.

There are three groups, placebo for three years, drug for three years or drug for one year placebo for two. I'm trying to work out my scenario.

Think it's safe to say I'm not taking sugar tablets.

The human mind is an amazing thing and can manifest itself in numerous aches & pains. I know I've developed dreadful headaches & sicknesses when I've had exams for example. I remember feeling poorly before having the contraceptive cap fitted. The thought of lots of internal exams freaked me out. I felt I was coming down with the flu, aches, pain, headace, hot and cold, shivering, but forced myself to go and dragged my aching body to the appointment. Miraculous recovery when the appointment was over and it wasn't as bad as I thought. I practically skipped out of the room. Think that was the first time I realised I was making myself ill.

I'm not sure though my body is clever enough to cause widespread hair-loss on the body with dramatic thinning, bald spots & colour change on my head!

Been bald since September and I'm rather used to rocking a scarf, plastering on the eye make-up, walking with attitude and meeting eye contact with a 'pretend' confident smile. But I've mixed feelings about changing onto the placebo. I'll know pretty soon if I am. Hair will grow back and I'm obsessively checking.

On the one hand I'll feel so much better when I've got my energy back, feet hurt less, I can find out if the nerve damage in my toes is permanent or not, no more grumbly tummies and rushes to the toilet. I can be more me without the crushing fatigue & low spots.

But can't help feeling the lifeline of Sorenfib could be being pulled away, knowing the drug helps lessen the reoccurrence rate.

Suppose though, I can't change the outcome. I'm either on it for another two years or I'm not.

But wonder if I've got the balls to have a purple skinhead if it does start to grow.

Not the time for platitudes and sugar coating

At work earlier in the week I was asked to join a couple of colleagues in a meeting room as they needed my help.

Intrigued, I walked in, we sat down and the woman opposite explained she'd been diagnosed the day before with breast cancer. She was articulate, beautiful and vunerable. My heart went out to her, it took me back to the place I'd been nearly 18 months before. I wanted to show her I cared. Wanted to let her know I knew what she was going through and only too well. I wanted to cry with her, try and share the pain and anguish.

However I knew that wasn't going to really help, she didn't need a relative stranger to cry with her or even for her. She has friends, family, loved ones to do that with. So I sucked up my emotions and listened.

And then I had a choice. I hope I made the right one.

I said what she was going through was shit, total shit. It wasn't going to get any easier for a while and it wasn't fair. She'd experience pain, physically and emotionally. She'd do a lot of crying, a lot of why me's, a lot of appointments, tests, procedures, needles, lots of needles and even more waiting. Waiting in waiting rooms, hospital rooms, her living room. It's totally and utterly shit.

But....

She'd also get to meet new people, special people. People who'll treat her, people who'll amaze and inspire her. She'll strengthen existing relationships, make lasting and binding new ones. Learn what a truly amazing thing the human body is. That although it goes wrong, it also has a resilience and it can cope with so much. That she'll cope, with lots more than she ever thought possible. She'll learn new things, new skills, see life differently.

It's shit, it's difficult but she was strong.

Of course, I wasn't that articulate, there were lots of face crunching as I tried to describe things interspersed with 'umms' and stilted sentences as I attempted to paint a picture and describe how I felt. But you get the picture.

I don't think I was asked into that room for sugar coating and platitudes but for honesty.

I hope i made the right choice, that I made a difference and helped in a small way.

But what do you think? What would you say? What advice have you for my new friend.

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

Scanitus

(Verb) the feeling of trepidation or anxiety preceding either attending a scan appointment and/or follow up result consultation

Sometimes it's also accompanied by 'a feeling of vagueness', 'mind wandering' into 'what if's and maybe's', 'sweaty palms' , 'sleeplessness' and 'jelly belly visiting toilet multiple times itus'

Sound familiar? I've got it, well and truly.

If you've ever had to go for tests and then waited for the results, you'll know exactly what what I'm talking about. And if you've battled cancer, it's all too familiar. Every consultation, every blood test, every x-ray or scan, you're hoping for the best news, but secretly preparing for bad.

I get my results on Wednesday, one year down on the drug trial, (2 more to go) one year all clear, I'm sure (I hope)

But until then, if you should see me walking briskly in the direction of the lavatory, please excuse my rudeness.......and get out of the way!

Posted with Blogsy

'If you want to see a rainbow, you have to learn to feel the rain' Paulo Coelho

Today I weighed in and cried in group (sorry everyone who witnessed my mini meltdown) I don't know what came over me, I can normally see the brighter side of life, the bigger picture and all those other cliches. But I was tipped over putting on 1.5 pounds.

But I wasn't really upset about that. It wasn't a shock, I've been teetering on the edge for a while now. I'd weighed myself when I got up, so knew it wasn't going to be pretty. Plus the carton of magnum ice cream I'd eaten Friday night, or the jam sandwiches I craved and then caved into on Saturday ( you getting the picture?) won't have helped.  

The simple fact is, I comfort eat. When things go wrong, when I want to cheer myself up, when I want to give myself a little food cuddle, chocolate (or cakes or biscuits) are always there as a pick me up. But I'm also usually disciplined enough to plan these little treats. The yumminess as the chocolate melts in my mouth and covers my tongue in velvety sweetness. The comforting repetitive action (always a whole packet!) of dunking biscuits into a piping hot cup of tea, which never fails to take me back to visits with my Nan who owned a bottomless biscuit barrel 

But at the moment my grasp on that discipline is slipping. 

I can cope with the sore feet, the crushing fatigue. I ignore the hair loss, (I understand from my daughter people pay a lot of money at beauty salons waxing to lose hair there, which i get for free!) I push to the back of mind that cancer might come back and remind myself I'm on the drug trial to give myself the best chance of that, and help others in the future at the same time. It's hard, but I put on the scarf, plaster on the eye make-up and walk with a positive attitude every morning.

Sometimes though its not enough.

And something breaks

This week it was my resolve. My self discipline. And my positivity. 

However in group today, they made me see that all of it, is ok. So what if I want a cake, everyone feels like that sometimes. So what if I've put on this week, I still weighed-in. So what? It's no big deal in the grand scheme of things. I'm still here, not just in group, planning my meals, going to work, doing things.

I'm here, full stop.

The title of this post was on Tracey's t-shirt today. It's so true. Sometimes even rain can look beautiful.

Ps. I've just ordered takeaway!

Email From My Brother - Doldrums, Spring, Autumn and Girl Guides

(First sent to me back in the beginning of April)

Hi Fay,

How's it going? So you are in the doldrums. It's probably a little bit weather related what with the UK appearing to still be in winter and all. You'll be hankering for some nice Spring weather with lighter evenings and warmer days. I reckon that might buck you up a bit, a least in part. Have you tried staring into 100 watt light bulb while humming the theme tune to Happy Days? No? Then I am all out of ideas. No wait, here's another one. Have you tried going to your nearest play ground,selecting a suitable swing and having a go? Just one swing for the swing averse adult creates nausea but if you stick with it at the very least when you put your feet down to stop swinging you can pretend you are Superman coming in for landing. Sam forces me to go on the swings all the time and I often make excuses like I'm an adult or I'm five times his weight and I'll break it but eventually or there's half a pint of dew on the equipment but I always wipe it clean and have a go and enjoy it. Once the nausea has stopped. Do it! Do it and blog about it! "My time on a swing" I double dare you.

Strangely enough I'm kind of wanting Autumn to get started properly here. After waiting for ages for last winter to finish (when we had no hot water for six weeks too) we had a glorious Summer of dust sucking drought but it's got to the point where it's time to move on. Maybe that's human nature. I've got the wood pile finished, I've got the blankets all stacked away for the beds. I'm prepared to be stripped to the waist shoveling wood into the fire like a stoker on the Titanic, sweating bullets, as it steams it's way to it's own inevitable watery grave. So I'm a little bit looking forward to roaring winter fires and hearing the rain lashing on the windows again. Six months time I'll be all like "Where's Spring?" but right now, I'll take a bit of cold weather.

This week I handed over all the money we made from selling Girl Guide biscuits. As Eva is in the Pippins we're now required to help raise funds via the annual Girl Guide biscuit selling business. You're allowed to choose how many boxes you want to sell (they're stacked up in Guide Hall like the warehouse scene from Raiders of the Lost Ark, I am amazed the forklift trucks fitted through the door) and luckily I plumped for just about the right amount to make it look liked we'd made an effort but not so much that we thought we wanted to found a biscuit empire to rival McVities. We had one box of chocolate biscuits, one box of mini-chocolate biscuits and one box of plain biscuits to sell. That may not sound much but there's anything from about fourteen to eighteen packs per box and the total cost to buy all of them was a hundred and seventy two dollars and fifty cents. That's a lot of money and just a bit too much for us to just purchase all of them in one go and do zero work (which was obviously the first choice because who wants to sell biscuits to strangers). In the end we sold most of them to Juliette's family and only had to buy about half our stock ourselves. I need to convince who ever runs this funding run that they need to change stock to perhaps selling stuff that people need and not just think as a luxury item. MIlk perhaps. Everyone buys milk. I'd buy Girl Guide milk if it meant raising some cash. Or beer. Can you imagine that. Yes, I bought seventeen Girl Guide crates of beers. It's for a good cause and party on! I don't know if the Pippins give badges for number of biscuits sold but I reckon I should get one for packets of biscuits eaten. I should be biscuit arkala or something with the number of Guide Biscuits I've put away this last month. I bought some petrol last week and a mum and her girl had set up stall next to the pay in desk. They were like "Would you like to buy some Girl Guide biscuits?" and I was like laughing in their faces like Arkle the Racehorse.

This week an e-mail has come in to the SCA asking if we'd like to take part in an opening ceremony type thing for a National Archery Competition. Apparently they have Kyoto archery and Mongolian Horse Archery booked so if we stumped up to do a show we'd have to up our game by oooooh, about a thousand percent. Last public show I did was in 2008 under the Major Oak in Sherwood Forest. It was a Robin Hood themed show because apparently that goes down best with the tourists in the area for some puzzling reason. There was one bit where the bloke playing Robin Hood dropped the chest full of "tax money" and it fell open to reveal all the coins rattling around in there were modern 1p and 2p pieces. As they'd spilled our Robin ad libed and grabbed two handful of coins and threw them into the crowd while shouting "Here's some money poor people!". I wouldn't see that many Japanese people clutching their heads again until the earthquake/tsunami of 2011.

So, waiting for the cold weather I'm basically living the tag line of Game of Thrones. Brilliant.

Take care,
Love Mark xxx

#EmailFromMyBrother - Playing Catch up from 24th of January Bunk Beds and Nerf Guns

This one was sent to me on 24th of January

Hi Fay,

How's it going?  I'm into the last week of the summer holidays with Eva going back to school next week.  To celebrate everyone's going back to Waihi Beach come Friday for a three day break.  Yes, everyone is celebrating Eva going back to school.  Not really, it's just me who's celebrating that.  But we are going back to Waihi so you're getting this e-mail early...

This week we've had a couple of Eva and Sam's cousins come for sleepovers.  This always means I have to pump an air bed up which is really hard work so instead I decided to finally assemble the bunk beds we bought a couple of months ago and let one of them sleep on the bottom bunk.  I had made the top bunk with it's in-built guard rail some months ago and we'd been using it as a normal bad for Sam to sleep in our room.  All I had to do was assemble the bottom bunk, move Sam's top half of the bunk beds into Eva's room, move Eva's old bed out and into our room to replace the top bunk and then slot the top bunk onto the pegs of the lower bunk with all the pinpoint accuracy of a safe mechanism locking into place.  I ended up doing this on my own because Juliette took one for the team and played with the kids to get them the hell out of my way.

How did I drop the top bunk bed onto the bottom bunkbed?  Easy, I used my forklift truck.  Only joking.  I can't get my forklift truck into Eva's room.  Plus I don't like to move my forklift out of the barn where I keep it next to my SR-71 jet plane and my 1960s era Batmobile. I'm joking again.  I don't keep them in the barn, I keep them in the playroom in a box marked "vehicles".  And of course they're not mine, they're Sams and are 1:43 scale toys.  No, I lifted up the top bed and placed neatly down on the pillars of the bottom one using my X-men powers of telekinesis.  Ha, joking again.  I don't have any X-men powers, unless really sweaty feet count.  Which they don't because otherwise there'd be a use for sweaty feet.  You could put out fires by simply walking through them and dousing them with sweat from your feet or something.  Actually my feet don't sweat that bad, it's just I wore my slippers for a couple of nights without any socks and now they smell like cheese.  The slippers that is smell like cheese, not my feet.  On their own my feet smell like schadenfreude.  Anyway ... how to drop a top bunk onto a bottom bunk on your own...

I sat on the lower bunk, lifted the top bunk up and shifted it onto my feet, lent back, swiveled around and lowered it down onto all four pegs at the same time using my legs.  It was like something from a circus act.  That is if the circus act allowed lots and lots of swearing.   The whole bed swap and bunk bed operation only took three and a half hours and I'm now on pain killers for my back but it was totally worth not pumping up that goddam air bed.

We had Eva's cousin Rachael stay over for two days and one night this week because her parents were working and needed a hand.  It was kind of tough I have to admit.  Juliette may have noticed an extra level of testiness when she came home and failed to empty the crap out of her lunch box after dumping it on the side for me to do, leave two drawers and one cupboard open for me to close and drop a full nappy bag in the kitchen bin rather than the outside bin for me to back up and stop the house from stinking.  I found that Eva and Rachael wanted to play their five year olds' games while Sam being two wanted to play their games too.  However what Sam wanted to do wasn't always what the girls wanted to do which caused some "problems".  Also Sam loves climbing up on the new bunk beds but he can't actually get himself down again so he stops half way down the ladder and cries.  Plus he likes to take Eva's breakable objects up there and throw them off which makes Eva cry.  Plus he likes to stand up and sway near the edges of the top bunk like Harold Lloyd and generally makes me cry.

There was a minor miracle that did happen this week.  I placed an online order for a couple of Nerf Guns for the kids to play with (for me to play with too) because we played with their cousin's Nerf Guns over Christmas and everyone enjoyed them.  Nerf Guns are basically air soft guns that shoot little foam darts.  The genius thing about them is that they come in all shapes and sizes with gun rails and sights and all sorts of gizmoes that makes me forget Barbie dolls ever the f*ck existed.  The miracle was that these two Nerf Guns were ordered on the Tuesday and they were delivered the next day.  Usually it takes a week for anything online to turn up so I was kind of blown away.  Anyway they arrived at a time when they were needed the most because we all played with them in the garden and I've got to say two five year olds with Nerf Guns just proves that if ever there was a zombie apocalypse you'd want to ditch the little kids rather than arm them.

These toy guns were like full sized, had magazines, you have to cock them to load them and came with detachable sights.  Apart from the fact that they're made from primary coloured plastic and were designed by someone who'd watched one too many sci-fi shows they had all the movable bits of real fire arms.  Okay so guns and little kids don't mix but I did think that I could teach the kids some range discipline for when we started archery.  Yeah, not really, I just want to shot little darts around the garden and pretend I was John McClane from Die Hard.  But there were a few things I noticed ...

First things first, five year olds need eight or nine attempts before they can load a magazine with all the ammo the right way around.  Secondly five year olds don't know what the cocking handle is for and often forgot to load a round into the "firing" chamber.  They were like pulling the trigger and expecting some sort of semi-automatic experience.  Come on Eva, you expect daddy to have the cash to spring for semi-automatic?   You've got to wait for your birthday for that... Thirdly, five year old arms don't have the muscles to hold the rifle up for long so they wave them around like dousing sticks as they aim.  I was like two feet away and could dodge their "bullets" like Neo in the Matrix just by "not moving at all".  Fourthly they take the sights off because "they don't need them".  When I say "take them off" I mean slide them off the rails and smash them on the ground like eggs because they can't hit anything.  Like the sights were the main reason they couldn't hit anything.  Fifthly if you can't hit a target with the first shot ,five year olds take a step or two forward.  They repeat this until they can touch the target with the end of the rifle.  This would be perfectly acceptable if we dressed them up in red coats and pretended we were fighting in the Napoleonic Wars but not when we amped up the action by letting daddy have a gun to shoot back with. Sixthly when five year olds run out of ammo they just keep shooting and walking forward in the hope that maybe a magic round will appear in the barrel.  It never does.  Seventhly when your cousin has a misfire and starts walking towards the nearest adult for help (me), the other doesn't give a sh*t about the other one and just keep shooting while I shout "stop!" at both and get ignored as per usual.  Next week I'm ordering throwing knives online.  Juliette's totally cool with that.

Take care,

Love Mark xxx

Hospital misses cancer targets

This news report (Link to report) has really gotten to me and I'm trying to work things out.

It's a small number, 4.  They've missed their target by 4%. However here's a bigger number, 15. 15 % who had no chance of getting treatment within the 62 day deadline.

But those numbers are people. People who've been told they've got cancer. People who are scared and overwhelmed, frustrated and angry. I've been that person.

They aren't just a number. The statement

 "they tried hard to ensure cancelled patients got their operations within four weeks"

 just doesn't cut it. Like that makes it all better. 

Four weeks is a long time, it's an eternity when you're struggling to keep things together and not think about cancer for 4 minutes let alone 4 weeks. 

This hospital won't be the only one in the same boat. I'm not directing my comments at the people who work there, doing an amazing job, under difficult situations. It's the situation I'm angry at.

This is my hospital and I was seen and operated on within 6 weeks. I was treated incredibly well during my stay, but post op and referrals were a little fraught and MrC's post op appointment was nearly two years after his stay. Yes really, two years!!

The numbers on this page are tragic. And each of those numbers represent a person and their families. The numbers are people not a statistic.

And we need to remember that.

We need a change, we need to put the patient at the centre of the NHS and not the numbers .... but what do you think?

Reasons to be Cheerful 6th April - Life is a little more rosy

It's Saturday and I know I'm a bit late with this, but first chance I've had to write this, however it's been brewing in my head like a builders mug of tea all week.

I spoke with Michelle the other day after she tweeted (I'm paraphrasing, because I'm too lazy to find the actually tweet)  'what do our tweets say about us, what image does it portray?' I thought about it, and it pains me to say, my twitter persona has turned into someone who whinges and whines. (not sure the real me has been much different to be honest, I must be a pain to live with)  Not a person I would want to engage with, let alone actually be. So, my five point plan, was well over due! 

It's not been a week of amazing revelations or earth shattering life experiences. More of slow warming up, a bit like our spring. And like a new born lamb, I've got a bit of a spring in my step. I couldn't say one thing in particular has made a difference, more of a collective of small things which have affected the whole.

1 - Work has been great, started the week thinking I had a huge mountain of work to climb up. But like most things, once I got started, I loved it. I've felt I've achieved something this week and pulled my weight. I know I'm not working to my full potential, but I saw and more importantly felt, glimpses of me!

2 - I joined a Slimming World Group on Monday, it was the first time I've been to one, having followed the plan on-line. I enjoyed it more than expected. I'm even looking forward to weigh-in, although if I'm being honest I don't think I'll have lost anything. However I won't have gained! 

3 - Been taking part with #FMSPhotoADay for April. And oh my goodness, I'm loving it! For those not in the know, you take a photo everyday which relate to the daily prompts and post it, either on your own blog, Facebook, Instagram, Twitter....there are so many ways to join in. It's given me 'permission' to get the camera out and just take photo's. Over time, I'm sure my ability will catch up with my enthusiasm! I've posted them on my sister blog Depiction

4 - Got a brilliant routine going for my feet. Twitter followers will know, one of the side effects of the drug trial is very sore feet. This coupled with the resulting nerve damage from the treatment, means they are permanently cold, as well as sore. Not a good combination.
I splashed out (Well, MrC did) on a Shiatsu Foot Massager which I use for 15 to 20 minutes every evening. I then heat up some wheat filled slippers, a bit like these, which Mum gave me, and they are toasty for the rest of the evening. (I've even started taking them to work with me! No-one has dared object when I heat them up in the microwave. Maybe they've not noticed.....sssshhhhh if that's the case, don't tell 'em, will you? Our secret)  Then a good old fashioned hot water bottle in bed and voila, a good nights sleep.
Feet still hurt, but its not as bad, result! 

Think my five point plan is working, life is looking a little more rosy.

I'm in the doldrums....

I'm sure I'm not the only one, but sometimes life is just so hard. 

I'm moving slower, struggle to get out of bed and can't find the enthusiasm to do the stuff I enjoy, let alone the chores. I've always been able to find the time and energy to crochet or sew, but I've several projects languishing in the bottom of the bag, looking back at me saying 'just a couple of hours and I'll be finished' I. Can. Not. Be. Arsed! 

Slimming World has gone out of the window and I'm not even really enjoying eating chocolate. I know, it's THAT serious.

I've even been neglecting my blog, I'm posting infrequently and have stopped sharing my Brothers wonderful mails.What is wrong with me?

Not sure what's happened to me to over the last few weeks. I feel like the colour has faded out of my life and I'm seeing things in shades of grey. Energy has leeched out too, I feel like my battery warning light is constantly on less than 10 percent and I can't even be bothered to find the cable to charge it. (come on, we've all been there)

I'm not ill as such, just tired of feeling sick. I've been on the drugs trial 9 months now and think the novelty has well and truly worn off. The dose was put back up to the full amount at the beginning of March and I know that'll be affecting how I feel. When I first started on the drug trial, I wasn't working and was able to rest more and just take things easier. That's not an option this time round.

I've been mulling around in my head what I can do it about as I'm sick and tired of feeling sick and tired. I've come up with a five point plan, what do you think?

Point 1

Eating crap is making me feel crap, I'm putting weight back on. So I'm joining a group. I'm actually making a commitment to go to a proper meeting and have ditched Online Slimming World. It had a purpose and worked for me then (I've lost four stone) but I need a boost now, and think a real Slimming World group will help.

Point 2

This means I'm actually going out and 'socialising' albeit at a weigh-in. Socialising, get me! Haven't done that for a while. In fact the last 4 weekends I've not left the house once. I've come home at 6pm on Friday and my feet haven't touched the front doorstep until 8am on Monday, you must admit, that's not a healthy way to live your life.

Point 3

I'm going to count my blessings; I'm better off than most in my position and will commit to joining in with Michelle's Mummy from the Heart  weekly Reasons to be Cheerful linky. It'll help me celebrates the good things, which will outshine the crapiness. It'll make me appreciate what I do have and what I can do. 

Point 4

I'll also start to share the wonderfulness which are the emails from my Brother. I've a few to post on back catalogue! They'll make you laugh, I'll enjoy rereading and sharing them with you. A little bit of sunshine from the other side of the world. Click here if you want to catch up

Point 5

I will post a little more about things which interest me, get back into My Glass Half Full blog. It's never failed me yet, can't see why it won't help this time too.

What do you think? Will you keep an eye on me? Got anymore suggestions to add?

Challenges are what make life interesting; overcoming them is what makes life meaningful

Joshua J. Marine

And if you were wondering where the saying 'In the doldrums' comes from, take a look here, says it all really.

Email From My Brother: six month all clear and a hot hot Christmas

Hi Fay,

Congratulations on six months of being all clear. (Single fist pump, double bull horns with hands while spinning around, high fives, firm handshake).

This week I have been mostly listening to Christmas songs on the radio and thinking "it's not Christmas". This is mainly due to stores having Christmas decorations up here since the 1st of November so Christmas-is-coming has kind of blended into the normal. Then there's the fact that Sam's baby monitor currently says it's 29 degrees C in the bedroom. Seriously it's so wrong having Christmas when it's hot. You've got radio stations playing the sh*t out of every conceivable cover song of "Walking In A Winter Wonderland" and Bing Crosby dreaming of a white sodding Christmas and all these images of snowy Victorian London streets with big fat jolly Santas in them ho-ho-ho-ing at the snow and my subconscious is just saying "it's not Christmas, it's hot, it's still Summer". My subconscious is kind of a killjoy at the moment. I'm thinking of having it drowned in a keg of beer. I'm going to have to set a reminder on my phone for Christmas Eve otherwise I might miss Christmas all together.

Of course I'm joking but actually I'd love to be able to forget about it and really set a reminder on my phone because we've got so many Christmas presents to wrap for the kids that I'm going to be looking forward to Christmas Day like a marathon runner looks forward to the finishing line. I hate wrapping presents. It's miles and miles of crappy tissue thin commercial wrapping paper (ooh, twenty sheets for tuppence, bargain!) and great big industrial sized rolls of sellotape. Nothing says I'm wrapping serious stuff here than a roll of sellotape you can fit your your clenched fist through the hole. You have to find the end of the tape too, get a strip going, cut and then repeat, littering all the backs of chairs, tables and sideboards with as many pre-cut bits that you can possibly do without losing the will to live. You might need them all you might not, but it's really crappy if you get half way through a wrap and run out of pre-cut sellotape. And there's always one strip that says "I'm temporarily stuck to this chair am I? No half measures." and electromagnetically sucks itself onto the furniture leaving you to pick it off with your nail. The varnish always comes off with that strip too.

Then out comes the first present and I'm resentfully chopping the paper with the scissors so that the cut line isn't smooth and straight but jagged and ugly an industrial city skyline. I put the present on the paper and stick the first bit on and roll and stick and turn and complicated end fold and stick and turn and complicated end fold and finish. Hurrah! Now, what did I just wrap and was it for Sam or Eva? Sh*t. Repeat a thousand million billion times.

I'm just a bit worked up at the moment. First world problems I think they call them. You ever go to empty a dishwasher, open the drawer and find a glass has managed to work itself facing up so now it's full to the brim with brown dirty dishwasher water and you've got to empty it, swill it out and make a judgement call on whether to put it back in for the next go or give it a wipe down with the tea towel and put it away? When I find one of those I drop to my knees and shout "Noooooooo!" while raising both fists to the heavens.

Sam has become more and more increasingly willful about getting into his car seat. It's a good job we rarely have to go anywhere in the car. Oh, my mistake, we actually have to make three or four car trips a day. This means getting Sam in his car seat six to eight times in a day and it used to go like this; carry Sam to car, open door, pop him in seat, buckle up, go. Now it goes like this; convince Sam to get near car, lift Sam into car, Sam throw paddy about getting into the car himself, Sam gets into car seat, Sam gets into car seat, Sam gets into car seat (I'm not repeating myself, it just takes ages), Sam in car seat, buckle up and go. But he's taken to pretending to get into his car seat. How is this jolly jape achieved? He climbs up to the seats and then hunkers down in between his and Eva's car seats like a garden gnome. He'll then sit really, really still and narrow his eyes in the hope that I'll be fooled. Unfortunately I can't actually allow this and so we're back to reasoning with a two year old on the merits of car safety versus traffic laws every f*cking trip. It's hot and I just spend half the day sticking my head in the back seat of a car. You'd think he'd get it after the first dozen times. Exhausting.

Anyway, the news says it's the end of the world next week so I shouldn't complain. Maybe I'll put off the wrapping until after the 21st December in case we do all die? I think this is a reasonable way to go. I'll maybe put off emptying the dishwasher until then too.

Take care,
Love Mark xxx

Email From My Brother : fighting kids and other things

Hi Fay,

How's it going? I hope your holiday from the drug trial is going well. I've got to say I don't know if I could hold up as well as you. Today I'm having a really bad day just being a stay-at-home dad. Both kids today were fighting over a plastic waste paper basket. Sam wanted to wear the basket on his head while Eva wanted to put a load of cut pieces of paper in it. She was clutching the balls of paper and screaming that Sam had to put the bin down while I asked her to put the paper in the main bin as it was being scattered all over the house. She of course refused, Sam refused to give the bin back and in the end I confiscated everything and pushed the wadded up balls of waste paper into my ears to block out the stereo crying.

Every morning at the moment is a lesson in hearing the word "no" from the kids. Getting dressed, brushing teeth, brushing hair, putting shoes on it's like every request I'm asking them to come over and let me poke them in the eye with peeled onions. All that I ask is for complete unwavering obedience, is that too much to ask? Juliette's M.O. is to make things "fun" and "distracting" so that brushing your teeth is game where by you're puppies being groomed for the big dog show or something. Can you imagine doing that every day of the week? Can you imagine coming up with some new roleplaying scenario just so the kids put their shoes on? It's Tuesday, you've got to come up with a new game tomorrow, that's exhausting as f*ck. I've decided they've got their soft as sh*te parent with their mum, so I'm going to be the parent that's harder than granite shot through the cold vacuum of space. My commands run like a computer programme; you will do A by the time B happens otherwise expect consequence C. Bam, bam, bam. I'm going to be the dad that when the kids are grown up they'll say "you always knew where you were with dad" and they'll respect that... or they'll cut me out their lives altogether and I'll never see my future grandchildren. At the moment it's a price worth paying just to get them to put their shoes on. Hell, if the Devil is listening I've got a soul I could let go pretty cheap some mornings.

Also I'm firmly not a believer in smacking. I never have smacked and I never will. It's also against the law to smack to child in New Zealand so there's that too. However I can see the attraction in smacking. On the one hand you've got to sit down and try to reason with a small child who's developing the ability to reason in the first place and although you've put forward a logical argument as to why they must or must not do something the child is exploring their boundaries and can illogically dig their heals in. So then there's giving them a quick smack and "that'll learn you". It's the real life police officer who has to take witness statements, fill out paperwork and follow procedure versus the Hollywood version who just ramps cars, shoots suspects and has a shouting match with his black police captain. Am I alone in being a parent who never would smack a child but thinks "You are being a little sh*t so this would be soooo much easier right here, right now if I just punched you in the knee"? I think it's the same for murder. I wouldn't murder someone I'm totally against murder but f*ck me lady, you had ample time in the checkout queue to get your purse out why are you only know with everything bagged and the pleading gaze of the checkout operator looking in your handbag? Wouldn't it be easier if I just murdered you with this here bag of frozen peas and I can purchase my shopping with some degree of reasonable expediency?

Okay, so changing the subject somewhat because I put some time in on Google and don't want to waste the research. One thing I learnt from The King of Torts by John Grisham (may not have been that book, it could have been something by Michael Crichton ... don't judge me) is that drug companies come up with names and trademark them before they have a drug. So I did some research on Sorenifeb. Did you know that Søren is a Danish and Norwegian given name originating from Latin Severinus, derived from severus which means "severe, strict, serious". So you may be taking a break from strictifeb or seriousifeb or severeifeb? Doesn't everything make sense now?

It's getting late here so I had written a bit about if you're into Harry Potter and dig the Latin link to Severinus think of it as having a break from Severus Snape from kicking you in the verjayjay. I know some people might be really into having Alan Rickman in a black wig and teachers cape kicking them in the crotch but luckily I deleted that from the e-mail because to reference that is frankly just plain weird and unnecessary.

Take care of yourself,
Love Mark xxx

Yippee!!!!!!

Today's another great day. Not only is it my beautiful and wonderful sister's birthday (a special one no less) but I've been given a six-month all clear!

I'm doing a little happy dance as I type. Imagine that in your head plus I'm wearing a wooly hat. Nice!

Role on the next three months, next deadline/milestone/all clear is 12th of March

Today's a Good Day

Image Credit

I've been preparing for this meeting for a little while now and entered the room thinking I would be taking a step back and watching from the sidelines, playing catch up and working out where I fit. Eight months away can do that to you. It saps your confidence, your ability to cope with stress, to juggle. I was expecting to be tired, to struggling with getting back into a routine. I wasn't expecting to feel like a shell, like a black and white version of myself, a lower resolution image. I've been playing catch-up, never quite in control, reactive not pro-active.  'They' don't tell you that.

I got into the room, some faces I knew, most I didn't. So I listened, nodded, made the right noises and then suddenly something clicked. I answered a question. My confidence grew, I heard myself taking part, asking questions, clarifying, contributing to the debate. I surprised myself. Not only did I actually sound like I knew what I was talking about, but I also felt it. No faking it, this was me, all me.

I came up with a suggestion. Now those people were nodding in agreement with me, a role reversal. People who've been part of this project for longer than me, eight months longer than me. A senior manager picked it up, liked it. As a group we explored it more. I expanded on the idea, described how I saw it working. It looked good, it felt right and it's now going to happen.

So today was a good day. Today was a brilliant day. Today is the first of many. The day I found My Voice.

My Reason To Be Cheerful

Email from my brother: What's pooping in his cereal bowl?

Hi Fay,

How's it going? I hope you've got over the blip with having to come off your trial drug and are feeling happier. It's a funny thing happiness I reckon. Here I am in New Zealand and it's still technically spring however the days are hotter, the grass has been cut in the fields around us and turned into hay which is lovely, bumblebees the size of two penny pieces are drifting around, the baby chicks are getting bigger and fatter, Juliette got a new job she wanted, Eva is looking forward to Christmas with their six week summer holiday and Sam's just Sam the Toddler, ever ready for random hugs and kisses. But what am I preoccupied with? What is it that's taking a poop in my breakfast bowl? Well I'm glad you asked, it's dyeing a cloak the colour green.

I wanted to make a medieval cloak so that I can wrap it around myself on cold evening in front of the camp fire at SCA events. I found some woollen blankets at the local charity shop, sewed them together, lined them, put buttons on and button holes and then had to dye the finished cloak green. I did it in the old bathtub and the results are a bit lighter than what was expected. If I wear the cloak to an event I'm going to requests to lie down on the floor so folks can have a game of Subbuteo on me. It's was like the least medieval green ever. I could wear this cloak as a high visibility jacket. So we gave the kids a bath tonight and Juliette's like "Mark, what's all this brown stuff around the bath?" and I'm like "er, it's some coffee ...", and she's like "what the hell is coffee doing in the bath?" and I'm like, "er... me and Sam were dying some, er, cloth brown." In reality I was baristaring the f*ck up in that bathtub with litres of instant coffee to stain the cloak darker. I'll find out if it's worked tomorrow. It's a real worry for me I can tell you. So erm, how's your cancer going?

That reminds me, here's a puzzler about coffee. Am I the only one that if I buy a latte from a coffee shop or what ever and add loads of sugar from those little paper tube packets and stir it all to hell it's only the last mouthful at the end that is actually sweet? It is just me isn't it. I don't have much luck with coffee. At the indoor play area where I take the kids I always get a coffee in one of those lidded paper cups and it always drips onto my jeans. I try to clean the coffee spot up with a wet wipe and end up clearing a clean patch on my jeans around the brown stain. So then it looks like I've got some sort of dirty fried egg on my leg.

Last weekend we rented a bach and went to Waihi Beach. Just for a moment I'd like you to say how you think Waihi is pronounced. If you pronounced it "why-hi" go back and try again. If you pronounced it "why-he" you'd were spot on, well done. If you're wondering that the heck a bach is it's a New Zealand term that originally meant a small beach hut. If you're wondering why my jeans are so dirty that I can clean a patch with a wet wipe you have to go back in the e-mails about six months. However things with baches have moved on and we rented a two storey three bedroom full on house for about eighty quid per night that was still termed a bach and was better than the hut we live in for the rest of the year. One theory is that bach comes from bacheolor pad and I'd love to have lived in that house as a bacheolor. Five minutes walk over some sand dunes to miles of white beach on the shores of the Pacific Ocean (yes, I did pretend to be C3PO on Tatooine while walking over the dunes - "Don't get technical with me" I said to Eva at one point just for giggles). There can't have been more than twenty or thirty people on that beach all day and we had miles of the stuff to spread out on.

We shared the holiday with Juliette's sister, brother-in-law and kids and the rest of Juliette's family popped up for a sort of day trip too. One of the the highlight of the trip was when a pod of Orca whales swam by us off shore and you could see the wave crests created by their dorsal fins and tails. Of course another name for Orca whales is "killer whales" but "Hey kids, look, Orca Whales!" induces fewer nightmares than "Hey kids, look, Killer Whales!".

Juliette's dad brought up some cheap (less than $3) plastic kites and the son-in-laws had a go at trying to fly them in lieu of the kids not giving a f*ck about them. They only had one string and tended to spiral around and hit the sand unless you got them high enough. I can say with some pride that once I got mine high enough I managed to unravel all of the light weight twine and got my kite to fly what looked like about a gazzilion miles up. Felix Baumgartner would have said it was high up. It was aces and skill. The only thing that bothered me was the design on the kite which showed the sun wearing sun glasses. I couldn't help but wonder as I unwound the Atlantic spanning length of string why the sun would wear sunglasses. To protect it's eyes from itself? It dawned on me that the only reason why the sun would wear sunglasses would be to protect itself from the nearest star to our solar system way off in Alpha Centauri. I mean that's like a tiny pin prick of light. So then it dawned on me that the kite was taking the piss out of the sun. The kite was designed to taunt the sun. I was going to get the kite to fly as close to the sun as possible like some sort of kite flying 21st century Icarus. Game on! Then Sam shat his swimming trunks for the second time that day and Juliette made me reel the kite back in and put it away. So that didn't happen in the end.

Actually I've got to tell you that before I tried to taunt the sun I had offered everyone a chance to fly the kite (as in "look how awesomely high I've flown this $3 kite, want a go?") and Juliette's mum said she had never flown a kite ever. I passed her the plastic handle, she asked if she had to do anything, I said no and then we waited about five seconds and she passed the plastic handle back to me with a curt nod. Awesome.

After the holiday on the way back we men dropped the wives and kids off at the Goldfields Railway. This is a restored charitable railway which runs between Waihi and Waikino along the Ohinemuri River. We had to drop them off and pick them up at the other because we had the two cars and it was a one way journey. So we dropped them off at the Waihi station then in the car park we debated long and hard about doing a runner but eventually drove round to the Waikino station and picked them up at the other end. The kids loved it as this was the first time they had been on a railway train. I joked that at the other end I was then going to then show other old time stuff like a a vinyl record player, a VHS recorder, a cathode ray tube television set, a rotary dial telephone and corporal punishment. The looks I got seem to suggest I had suddenly morphed into Phil Harding from Time Team and had suggested we all do some flint knapping. Up in the Maungakawa Reserve by us is an old outbuilding that's had people graffiting it for the last hundred odd years. Some of it says stuff like "Dave and Sue, Sep 1994", but some is from 1947 and the like so you kind of respect it. My favourite quote on it is "Nothing is as old as yesterday." Think about that one for a moment... nothing is as old as yesterday. That is deep. I'm going up there later to add "except the day before yesterday obviously. Mark 2012".

It also occurs to me that nowadays you post something now on an internet forum or what ever and chances are there's some sort of ratings system for it. So every now and again you can't but help pop back and check out if anyone thought what you said was any good. Usually it's "Likes" or green thumbs up or red thumbs down but there's nothing like that for graffiti at all. From now on I'm going to go into public toilets and mark each statement with random green thumbs up and red thumbs down. So you'd see "I have climbed highest mountains, I have run through the fields, Only to be with you, Only to be with you. I have run, I have crawled, I have scaled these city walls, These city walls, Only to be with you. But I still haven't found what I'm looking for, but I still haven't found what I'm looking for." (add six green thumbs up, four red thumbs down.) And then underneath someone could have written: "Have you tried taking your sunglasses off before you look Bono?" (add five green thumbs up, one red thumb down).

I think I'm in bit of a funny mood because my hands are still dyed green from the cloak (gives self two green thumbs up) so I'll say cheery bye for now. Speak to you next week.

Love Mark xxx



 

Turn it around, mix it up a bit and a new view

I've decided for this post to turn things around, examine the stuff going on and take a look at things from another point of view. Following my post about having to stop taking soranifeb (I'm on the Sorce drugs trial) for a couple of weeks, I thought it was only fair to flex my glass half full side of myself. The Me which reframe's and looks at the brighter side of situations.

If you don't know what's be going on you can take a look at the post by clicking here

• Firstly I've always known what a wonderful bunch of people I hang out with on Twitter and Facebook, but the positive comments, page views and tweets have blown me away. Sometimes I forget how absolutely fabulous you all are, and take you for granted. You really made a difference and made my feel so lucky and loved.
• I also got a chance to chuckle at the sensible, bizarre and funny comment from brother too (let me know what you think!)
• Okay, so I can't take the tablets for a couple of weeks, but there are benefits to that too! No need to stress about taking them out with me.
• They have to be taken on an empty stomach, so two hours after food or one hour before, as close to 12 hours apart as you can. Sounds so easy doesn't it? I love my food, I've found it hard. Say no more. But for the next two weeks, if I want a snack before bed, or a hot milky drink I can!
• No more alarms on my phone to remind me to take the morning dose at 11am. Excellent!
• Hopefully by giving my body a break from the drug, the side effects will subside too. My feet won't hurt anymore and I can go for a long walk. I enjoyed them so much when I was recuperating after my hysterectomy. The dog is going to love me again :)
• My swollen tummy will go down and trousers will fit again (just in time for the Christmas party too!)
• No more stomach grumbling noises and anxious looks to make sure the toilet is free.
• No more mad dashes to the loo at all times of the day. Maybe I can attend a whole meeting without excusing myself (the worst meeting I had to leave twice in hour)
• I can unpack my 'in an emergency replacement clothes' bag for a while too!
• Maybe my energy levels will increase; I can give the gym a visit or two and stay awake past 10.30pm
• Also the pins and needles in my feet at night will subside, no more wiggling to wake them up.
• I can post and link up with Michelle's reasons to be cheerful linky, I've missed you!

And the best reason? It's given me the chance to look properly at the situation; it's not the end of the world and do what I do best and see the silver linings.

I'm angry; but I'm still Me

I had to visit the oncology department today and I'm pissed off and angry that I've been told to stop taking the trial drug for a while.

'A little break from the drug' they've said. 'A chance for your body to recuperate and recharge' they've said. 'Two weeks off and we'll review it when you come back for your CT scan results. You can have upto 3 weeks off at a time if needed, it's not a problem' they've said.

It all makes sense. My sore feet are very very bad apparently (I've gotten used to them) The dodgy tummy and constant diarrhea is a classic symptom of toxicity, but again something I've accepted and made a joke of.

But I still feel like I've failed.

My plan, my big scheme, my coping mechanism with all of this cancer crap, was to try my very best. To give the drugs trial my best shot and stay on it for as long as I could. To give myself the best chance of making it work. For me not to get a recurrence, for it not to come back. For me to help others in a similar situation by taking part, no matter how hard it was going to be. For there being something worthwhile and meaningful from getting and then fighting cancer. By taking part in the trial and maybe in the future, people, having this drug as a regular and normal therapy. You know, just to make a difference.

So being told I need a break from it feels like I've failed. It feels like my body has let me down. Again.

I'm coping mentally. I'm back at work and functioning well. My brain hasn't let me down. My sense of humour is still there. My go ahead attitude to it all is still intact and raring to go. Throw anything at me, you horrible nasty disease, I'm ready for you. My smile, which gets me through most things, is still there.

It's just my body which isn't coping. It's causing me to get infection after infection. Pain. Losing my hair.

It's let me down.

It's like Me, you know, the bit which makes me, Me, is striding confidently along to reach the destination with determination and a 'can do' attitude. And my body, the muscles, tendons, bones, heart, lungs, fingers and toes are cowering in a corner, whimpering saying 'leave me alone, I feel crap and you can't make me go with you'

But I suppose I'm thankful that the bits I have a conscious control over are co-operating and staying strong and positive.

The bits that are breaking down, I have no control over. I can't force my stomach by sheer willpower to stop developing a stomach ulcer. Or order my fingers and toes to stop suffering from nerve damage.

I know it's daft that I feel I'm letting myself down. I'm just thankful my will power is still intact and willing and able to fight on. Albeit when my pathetic body has had a little rest!

So although I'm angry about it, I am grateful for the small things. I'm still Me.