How are you feeling?

This is how I am greeted now. No "How are you?" Or "How is work?"  I have become all about the illness. It's as if all other aspects of my life don't matter any more. Here I am trying to put the evilness back in the corner again and everyone else is dragging it back out so it can ruin the party once more.

Ironically I have a standard answer which was really emphasised at my work Christmas do this week. I was greeted by a colleague with the standard "How are you feeling?"  And I responded with my standard "Not too bad thanks". He then asked if that was true or just my standard response. At this point a very close work mate asked the same and gave me a massive hug. And my response then was "Shit", to which the first guy laughed and said "ah the real answer."

It got me thinking. Are people asking because they genuinely want to know or because they feel they should ask? And why do I tend to give my standard reply? Why do I not tell the truth? Is it to protect others from my reality, or not to admit that this is difficult and that I am struggling.

The truth is I don't know the answers to these questions. But what I do know is that there is more to me than this evil disease. Please don't forget me.

10 days

....to go until I get to go the happiest place -  and collect the fabulous Millers.

Yes, this time in 10 days my gorgeous brother will be here, and just thinking about it brings tears to my eyes.

There is some pretty amazing stuff in amongst the crap.

The Force is Strong in this One

.....well sometimes. And sometimes not.

Another meltdown occurred in chemo this week as I was running a temperature as well as the low Hb (7.4 for those that wish to join the guessing game). So 3 units ordered and if my temperature spikes then I will stay in for iv antibiotics. Hence tears and bad language.

I've been back at work 2 weeks and trying to have a life that it not totally ruled by this evilness but it seems that isn't so easy. I think the fact that I have been ill since June and there has been no respite, I have just had enough. I know another stay in hospital isn't the end of the world but having to cancel stuff and be unreliable really gets me down.

So here I am on unit 3 and the temp is wavering. However the TV is keeping me amused as I'm watching Return of the Jedi. For those that don't know the Star Wars theme was what I walked down the aisle to on the most amazing day of my life. The best part was that Darrell didn't know this sneaky plan that was cooked up on my Hen Weekend. He had the most enormous smile on his face. That was a very good day. 

Holiday = Over

Why can't things just be straight forward? Why can't I just have a 2 week holiday and then come home and go back to work?

Because my life is simply not like that. And sometimes it pisses me off.

The last few days of the holiday I was getting increasingly more breathless and more frustrated with how unfit I felt. So I made a plan to get my bloods checked when we got back, so if I needed a transfusion that could be done on saturday and we still had sunday to enjoy.

One crazy drive later and a walk to oncology (without vomiting or passing out) I am told my Hb is 6.5. Fuck. It has become a slightly odd game that Darrell and I play - called, very imaginatively "guess the Hb level". I have the slight advantage as I know how shit (or not) I feel but hey, sometimes I'm allowed a head start. So I went for 7 - not bad eh?!

However 6.5 is very nearest the lowest I've ever been (6.4) and not good as my last transfusion was 2 weeks ago. Anyway - plan was for 4 units, 2 each day of the weekend. Plan royally buggered.

I have to admit that at this point I sat and cried. Not ideal in the Oncology department but sometimes I have just had enough. Sometimes I just want a break. It's bad enough needing transfusions virtually every fortnight but to bugger up an entire weekend is crap. I want to be normal. I want to be able to plan to return to work on monday, without something coming along that threatens that. Let's be honest - I just don't want to have cancer and all the shit that goes with it. Mind you, who does?

So 3 units down, last one tomorrow. Lovely Dr Evil came in and asked the nurses to give the 3rd unit tonight so I can get home as soon as possible tomorrow. Is it inappropriate to want to hug him?



Beach Hut hot chocolate

Spent the evening watching the usual saturday night Strictly and X Factor and sorting my holiday pics. Here are a couple just so I can remember what it was like to feel slightly normal for a while.

Reflections



Unexpected tears

Sometimes things are ticking along and suddenly BAM. Something happens, or is said or read that totally floors me. Leaves me overwhelmed with emotion - be that sadness or anger.

This evening that happened. A quiet mooch through Facebook announced the birth of an old school friend's daughter. Now that in itself is ok - I'm somehow getting used to the gut wrenching heart break that goes with every pregnancy and new born. Putting my grief aside, I'm always thrilled.

No, what got me was her name.

Harriet.

The name of the daughter I will never have.

How does that get any easier? It doesn't.

This is the life

Just a quick hello from The Land of the Pasty. I am currently sitting on a very squishy sofa with sun streaming through the windows overlooking the beautiful beach of Watergate Bay.

I am relaxed, eating too much and trying to ignore the evilness. This holiday is well overdue, well needed and providing some respite for the soul. For both of us.

I love it here. I may never leave.

4 sleeps

.........until we go to the Land of the Pasty for 2 weeks and I can't wait.

It seems a bit daft to need a holiday after having 3 months off work but it's been what can only be described, quite frankly, as a shitty three months. We haven't had a holiday since January so are in desperate need. And it's been FAR too long since we visited our spiritual home.

My mind, body and soul can't wait.

Freedom

10 days. The longest that I have been out of hospital since July. How crazy is that?

I was finally released last saturday evening after a final stress of making sure my temperature was normal all day. Also on the understanding that I have to keep a temperature chart as if an infection was going to raise its ugly head, it would happen now that the antibiotics have finished. So twice daily I have to check that I'm not burning up again - remembering to not do it straight after a cuppa! And without wishing to tempt fate, so far so good.

My lovely cardiothoracic medic warned me that being home would be much harder than I anticipated. I have essentially existed in one room for the last 12 weeks so living in a house is a big deal. And man he wasn't wrong. Bit of a shock to the system to have to make a cup of tea! I am used to asking some lovely person to sort all my needs. However - I am managing and being a good patient and not doing "too much" - whatever that means!

Today I have taken that to the letter and have spent the day in my PJs on the sofa, under the Quilt of Love! I could get used to this!



Super soft PJs and UGG slippers from Oz - chosen by my lovely brother

You couldn't make it up!

Well the good news is that the 5 weeks of radiotherapy is done and has actually gone quite well. All the pain has gone and I no longer look like I ate all the pies! The most recent CT shows the tumour resembling swiss cheese! Weirdly the frying of the evilness continues for another couple of months after finishing actual treatment so we can't judge the full effect. Everyone has been pleased with how I've done - even my skin hasn't suffered too badly. I just have a perfect square peeling sunburn on my bum! Very glamorous. The facilities are amazing and treatment each day only took about 15 minutes.


Not very comfortable at all!

The radiotherapy room



Being lined up and positioned

My View lying on the table

And the incarceration hasn't been too bad actually. It's amazing how many people pass through London or visit London, so I have been really lucky to have had loads of visitors - some old friends that I haven't seen in many years too. Weird how there are some good things to come out of the evilness. My amazing work colleagues got me some vouchers for here so I could have some pampering whilst in hospital. It was such a lovely thought and very much appreciated. 

So I have actually been quite busy hence being rubbish at blogging!

Now it all seems rather positive doesn't it? Well, those of you that know me, may know that I tend not to expect good news, and this time is no different! About 3 weeks into evilness frying, I started to spike temperatures. After many blood cultures, bodily fluid samples and tests, it was eventually discovered that I had Endocardititis. A big lump of yuk inside my heart. Arse. I mean seriously, you couldn't make this up. So 2 more consultants to add to my collection - heart surgeon and heart medic. Onto a shed load of iv antibiotics to try and get this thing to bugger off - all the while being warned that it could break off and travel to my lungs. This would be a very bad thing. 

Much head scratching and phone calling and general discussion resulted in the antibiotics not really working and the lump staying the same which meant that the nice surgeon that I met (just in case, but you won't need me) got to step up. 

So I had my final frying on monday and then tuesday dawn was transferred to another hospital in london - The Wellington. This was necessary as they have bypass there - holy crap as I soon realised that we were talking MAJOR surgery here. Cracking my chest and bypass etc - the stuff of ER and Holby City. Just what is recommended after 5 weeks of radiotherapy when your body is in tip top form!

It must be said, the goodbye at the theatre door when you are heading into a thoracotomy is terrifying. I am not scared of operations etc but this was one time when the thought was there that I may not wake up. Fuck.


Back in the ward with a central line sewn to my face!

But wake up I did and for once I had GOOD NEWS. There had been musings that maybe this lump of yuk was actually a little gang of yuk and evilness. It's always there in my mind so I wasn't exactly surprised when the seed was sown.

But NO. For once the evilness didn't get to join in the fun and it was just yuk. O.M.G. and all other such shock related type exclamations. After all the shite I finally get a little bit of good news. I know that endocardititis is a big deal and I need 2 more weeks of iv antibiotics but evilness of the heart would have been very bad indeed. Very bad.

Yum!

And in the midst of all of this madness my amazing internet weirdies have been there every step of the way. Not content with gorgeous flowers, and yummy cupcakes, they blew me away with a hamper of home made goodies and really thoughtful gifts. There was a Cath Kidston explosion and a beautiful necklace from Tiffany. I was stunned. It is truly incredible that people that are to a degree, strangers, can do such an incredibly thoughtful thing. I am so blessed and honoured to be part of the community. Thank you never seems enough.

Incarceration

Now one of the problems with the evilness is that sometimes you get admitted to hospital at short notice and have to quickly pack a bag. I have managed to get that down to a fine art now - remembering all those essentials - mobile phone, iPad, chargers, for example! However lap top is classified as not essential as have iPhone and iPad to keep contact with the outside world and my support network. Now it would appear this is a small oversight when it comes to keeping up with my blog as the formatting goes to crap if I use my iPad and me being the pedant that I am, can't cope with that - hence the silence.

It can only be summised that the last few weeks have been shite! In and out of a variety of hospitals - including a jolly old stay in my favourite place, Hammersmith. Meanwhile during this time causing poor Dr Evil to do an awful lot of head scratching! I am never straightforward it must be said.

What we do know is that the very likely reason I have been feeling so crap for the last few months is because I have had Clostridium difficile or C. diff as it is more affectionately known. The comedy value of this is that you become treated like the unclean and everyone appears in your room wearing aprons and gloves etc. Just what you need when you are bored in hospital. However a quick trip to Wikipedia after being informed of this wondrous news actually brought a smile to my face. Why you may ask - well.....

".....significant diarrhea ("new onset of > 3 partially formed or watery stools per 24 hour period"), recent antibiotic exposure, abdominal pain, fever (up to 40.5°C), and a distinctive foul stool odour..."

Hurrah - how I have been feeling for months. C diff is one of those fun type hospital superbugs. Once I did my Sherlock Holmes bit I came to the conclusion that the 6 different antibiotics I had when I had the pyelonephritis/nephrostomy/stent fun and the stay in lovely Slough, is when I contracted this nasty little blighter. That was March. It is now August. So I am on lovely metronidazole to get rid of it.

However, what we have also established along the way is that maybe the lovely rash-inducing drug isn't doing as much as we would hope. After the horribleness of another colonoscopy and what can only be described as the humiliation of a virtual colonoscopy CT (I will leave you to Google), the evilness in my abdo has formed a 9cm mass low in my pelvis. Shit. More tremendous news. It is never good when you get taken out of your hospital bed in your PJs to be shown your scans.

Now what Dr Evil told me after giving me the plan, was that he had driven to the hospital that night, preparing himself to tell me that there was nothing more that he could do for me. Fuck fuck fuck. But and it's a big but - he looked at the scans himself and decided he can help.

So here I am at The London Clinic (now that you MUST Google), for the next 5 weeks having radiotherapy Monday - Fridays. I get the weekends off for preverbial good behaviour! The hope being that we can shrink this bastard - or maybe make it piss off for a while. My biggest battle is the mental one of being here for 5 weeks in Central London, a long way from my family and friends - but needs must and all that. This place is the Canine Gonads of places and I am getting the best treatment I could possibly get. Can't say fairer than that really. So that's me.

As if all this shit wasn't enough to be going on with, someone decided that no, you need more and very tragically Darrell's gorgeous, beautiful, wonderful dad; my truly lovely father-in-law has been taken from us. He too had the evilness but went downhill very fast and very unexpectedly. So Darrell had days of trying to visit two hospitals, terrified that he would lose both his father and wife. How insane is it that Darrell's 99 year old Grandad had to attend his son's funeral? Life is fucking sick sometimes. Sleep well Vic.



Four Generations

Mind you I have timed all this incarceration quite spectactularly well. I watched the entire 2 weeks of Wimbledon and also the entire 2 weeks of the Olympics - London 2012 and will also squeeze in the Paralympics. This may also have played a part in my abscence here even now that I have my lap top! Far too busy watching the amazing talents of Team GB. Trying not to shout too loudly for Jess Ennis, Mo Farrah, Bradley Wiggins, Sir Chris Hoy....... etc etc. Fantastically inspirational and great to have so much positivity in the country. A work colleague ensured that I was suitably attired for the occasion!

Olympic'd up!

Now I have the appropriate equipment I shall keep you amused with my exploits!

7.9

As I sit here drinking my bedtime Ovaltine, watching the third of another 3 units of finest A+, I can't help but look at the last 48h. Yesterday was round 1 of chemo. A day that started with the usual feelings. The unknown is always much worse. My gorgeous chemo nurse Eileen will be looking after me and she has already advised me to have a port fitted as my veins are teeny. I already have a big bruise from yesterday. But my bloods were not good. Great start. I am still hugely anaemic. So another blood transfusion recommended. Joy. Had the new chemo. Very alarming as no anti-emetics are given. Just iv piriton - so I was no use to man nor beast! All went well and no reactions - just have to see what the next week brings. One blood transfusion reaction later and the 3 units were abandoned yesterday and so here I am today. But this time let's take 4 hours over each unit. Yawn! I am staying in tonight as Dr Evil is coming to see me in the morning having spoken to my surgeon. It seems that he has finally listened to what I have been telling him for the last few weeks. How about we look at why I'm so anaemic? Where could the blood be going I wonder? Hardly rocket science. Still 25 minutes to go and I get my arm back. Clever doctor that, that put the cannula in my left arm. Interesting time I've had trying to do anything! Provided some entertainment though!

36 weeks

I warn you now - I am not in a good place right now so there is a huge potential for this to be a bit ranty. Don't tell me I didn't warn you!

So after the blood transfusion I had a load more energy but was still struggling with pain in my hip/leg. A week of steroids helped a little but not enough so stop me waking up all night long. I was also due to have a permanent stent fitted so was hoping if any of my pain was related to that, then at least that would go. Or so I thought. Stupid diligent me contacted the urology team to let them know I had been on dex for a week just in case that would alter things. Well, alter it did. They cancelled the stent procedure. Pissed off would be an understatement as chemo has been delayed to get this procedure done. There was talk of doing it in 2-4 weeks. Great. Dr kidney and Dr anti-evilness have now decided that we need to get on with chemo and deal with the stent later.

Meanwhile the next day it is the big appointment to sort out the next kick-ass drug protocol. And what a surprise - the plan has changed again. I'm not sure why I am surprised really - they do it every time. I mean, this is only my life we are talking about here, my plans for some sort of normal existance. Why on earth would I need to know what is going on?

The plan is quite frankly shit. There is no other way to describe it. You may recall it was to be treatment every 2-3 weeks for 6 cycles initially. It would appear that the goal posts have moved - out of the freaking stadium. I am now facing treatment every week for 12 cycles. Mm ok, I can do that I think. Weekly is less than ideal, but for 12 weeks, it's manageable. Ah not so, my young Padawan learner. A cycle is actually 3 treatments - so the reality is 36 fucking weeks of treatment. 9 months (the irony of it being 9 months is so not lost on me!). There was I hoping for 3 months as 6 months is really hard going, and instead I get the big fat booby prize of 9 months. So chemo for the rest of this year and going into next. Thanks. Oh but it's ok as I will get a 2 week break along the way. Gee thanks, I am so eternally grateful.

Weekly means no getting away during the "good week". Weekly means kissing goodbye to any sort of plans. And let's not forget the real gem in all of this. 9 months of treatment and it won't get me into remission. We will just casually drop that in whilst you are signing the consent form. It will hopefully control things, maybe shrink them but the evilness is not going to go away. You may now begin to see why I am in a rant. Why being strong, being brave etc etc is a major struggle right now. It all seems rather pointless to be honest. I get to have treatment for 9 months but it won't get rid of this evil bastard thing. So really, I find myself wondering what is the point? It has crossed my mind to say no. That tends to start freaking people out around me when I say that. They can't see that a life of feeling like shite is no life at all really. Obviously they want me around for as long as possible. They don't or can't see it from my shitty side of the fence. I have put many animals through chemo and my number one priority has always been Quality of Life - and that has to be mine. I fail to see why I should put myself through 9 months of hell if it isn't going to make a massive difference.

But for now - I start the marathon tomorrow. It seems like a very long, bleak road ahead and right now that drunk dude that was asleep in the corner of the party, is back in the room, vomiting everywhere and putting a real dampner on things. It feels like I am just going through the motions of life and I hate that. The green-eyed monster has joined the party again. I am envious of everyone for just being able to have a normal life. I have a birthday pedicure that has had to be put on hold as I don't know how I am going to feel so can't comit. I mean FFS, I can't even plan a bit of pampering at the moment.

My insurance company have said they will only pay for this new drug for 12 months. So if it helps and doesn't make me feel like shite, and my Dr wants me to stay on it long term - then I can't. It just gets better doesn't it? Mind you - if I was an NHS patient I wouldn't be eligible to have it at all - but don't even let me start on that particular rant.

So I will start treatment and see what happens. I figure that is all I can do. Being a biological it should, in theory have less side effects that regular chemo. Although the ones it has are real peachy. Disfiguring skin rash, diarrhoea, brittle hair, curly eyelashes (we don't mind that one!) and let's not forget the allergic reaction and possible anaphylaxis. As I am sure you can imagine - I can't wait for tomorrow! The only good thing is that our dear friend the FFH doesn't get a piece of the action this time and for that I am eternally thrilled. There will also be no repeat performance of Mr Wiggly as the infusion is just for an hour. However this does mean that I may be sporting the heroin addict look as my poor veins are in for a battering. But my gorgeous chemo nurse, Eileen, has said that if we start to struggle then she is going to insist on a port. Seeing as I am a skinny minnie now, my veins are teeny and weekly iv action is going to take its toll. So another play with my dear friend Mr midazolam and my favourite radiologist may be on the cards.

You were warned were you not!!! It's a bit grim being me right now. I know I am going to have to snap out of this soon otherwise bastard evilness is winning again and we know how that isn't an option. I guess once tomorrow is done and I start to see what the reality is like then that may help (or not!). It's the joyous unknown at the moment and we all know how popular that is!

Oh and before I go, just one last little gem to finish it all off!! I had another CT yesterday - they want a baseline as it has been 6 weeks since the last one. I didn't like to point out that surely all these X-rays can't be good for me - I mean they can give you cancer can't they?! Anyway, black humour aside. The radiographers always have to ask you when your last period was and is there any chance that you can be pregnant. Shitty questions given my set of circs but I understand. They are normally very apologetic when asking. Ah but not yesterday. As if I didn't feel crap enough. I explain that last period was a month ago, can't remember exact date but am due now (PMT probably not halping the current mood!). But no, I sigh, there is absolutely no chance that I can be pregnant. Now not content with the big sigh and glum face in front of her, she then asks "oh is that because of your treatment?" Oh dear god. How I didn't shove her head into the floor is beyond me. Er no you insensitive oik, it's because having cancer means that pregnant is the last possible thing that I can be (and the thing that I most want to be and will never be). I've just told you that I am having periods so clearly the chemo didn't nuke my ovaries which is great, but I start chemo tomorrow so why on earth would I be pregnant, and after any chemo you have to wait 18-24 months before trying anyway. I was stunned. How fucking insensitive is it possible to be? She had my form in front of her detailing "recurrent bowel cancer" and "baseline for chemo". I despair. I should have just said - No I can't be pregnant as I am a lesbian.

Now that would have brought a much needed smile to my face! Thanks for reading.

He ain't heavy.....

The saddest place on earth never gets any easier. We have now developed a ritual of passing the last few hours at Krispy Kreme just by the departure gate in Terminal 3. It's a good giggle and fuels a great sugar high.

But all too soon the inevitable arrives and it is time so say goodbye once more. It never gets any easier - in fact with all my shit, I think it gets harder as I know that we both wonder if we will ever see each other again. Man why did he have to marry an Ozzie? Don't get me wrong she is wonderful and I love her dearly - but the other side of the world, seriously?

Love you more than words Rob xxxxxx

6.7

Apparently this is not a good haemaglobin level to have. It can cause a degree of lethargy and light-headedness. In fact most people at this level can barely function. My body it seems has adapted to a massively reduced amount of oxygen but hey - still not good.

However 24 hours later, 3 more units of the finest A+ (again hoping that the amazing people that donated are good with their grammar!), and the dizziness has gone and walking upstairs no longer feels like a marathon. Rather a splendid result I say.

Incidently for those that were wondering - the normal level is above 11. Ooops.

I'm glad the energy levels have improved as I am doing the dreaded Heathrow departure gate ordeal later. It never ends well.

Third time lucky ........

Living with and fighting cancer becomes a way of life after nearly 3 years.

Tests, results, appointments become part of life. Waiting for results doesn't get any easier. Receiving bad news is always crap.

So getting the phone call to say that on a routine CT they can see that the evilness has returned was devastating. Especially as the night before Dr Evil has told me that the MRI of my liver shows no sign of metastatic disease. So the something in my liver is nothing horrid. I had nearly 24 whole hours of feeling positive and then BAM, more shite. Yes, recurrent bowel cancer is generally managed and not cured but I can always hope that I would be the one to buck the trend. Well for now, it seems not. Pretty shit that I have only had 5-6 months off of treatment and now I am facing more chemo. My body has barely had time to recover; my hair is just coming back along with comedy curly arm hairs. And now I have to face more kick-ass drugs. It fills me with dread. I still don't actually feel like myself yet and now I have to do it all again.

One teeny bit of good news is that they have tested my original tumour and it means that they can use a very special targeted drug called Erbitux. It is an antibody so much more specific against the evilness and hopefully less side effects. Well ...... apart from the "disfiguring skin rash". Bloody great. It can just be a few spots right through to raw weeping skin. Bloody brilliant. As if chemo doesn't make you feel crap enough without looking hideous too. I know it's vanity but really? Give me a break. I am quite looking forward to the curly eyelashes mind - they sound rather interesting.

So like some sort of nightmarish Groundhog Day, here we go again. 6 cycles at 2-3 week intervals ....initially. So you can betcha they won't stop there. Give me a big op over relentless chemo any day. It is a bit like a Dementor - sucks the soul out of you. It's hard when you know that in all likelihood it isn't going to cure me so I can't help wondering what the point in all the crap is.

Apart from another glitch in the war against evilness, we have tried to do something positive and have moved house. The dreaded phone call arrived 8 days before we were due to complete which prompted a tricky conversation. Do we do it or not? As much as moving and all that that entails was kinda the last thing I felt like doing, I felt that not doing it meant that the evilness wins again. So move we did.

Sod you evilness you are not taking everything from my life. You need to bugger off back into your box. New house. New beginning and maybe a positive start. Who knows. Let's hope so eh? And the best news ever is that my brother is currently sitting on my sofa! Fan-bloody-tastic. He is here for 2 weeks as a result of this http://www.absoluteradio.co.uk/onair/breakfast/features/one-last-game.html

Sometimes there is some good in amongst all the shite.

Squashed Tomatoes and Stew

12 months ago I was in hopsital having surgery that turned out to be to remove the evilness from my small bowel. 12 months ago I was given a special pink gown to wear for the day as I was to spend my birthday in hospital. Rubbish.
Never again. This year I decided as I had the fortune (!) not to be hospitalised, and for my birthday to be over Easter, to enjoy a 4 day celebration! I am also in the position now that few will understand - that every birthday that I reach is a good thing - another milestone. If (when) I get there - my 40th is going to be bloody massive!

Started with an amazing day at The Making of Harry Potter at Warner Brother Studios, Leavesden. As a massive Harry Potter fan this was an awesome day - and actually rather emotional. I suspect due to HP being a part of my life for the last 10 years and there I was actually IN the Great Hall, and on Diagon Alley. Wow. I naturally had to purchase a few souvenirs including Snape's Wand (!!!) and Hermione's magic bag from the Deathly Hallows films - bit disappointed that I don't seem to be able to store a tent in there.

My actual birthday was spent visiting our new house in West Berks - so we could measure up and plan stuff. Hopefully we are moving at the end of this month. Very exciting but trying not to get too excited until we actually have the keys. Things in my life tend not to always go to plan - you may have noticed, so until it's all done and dusted then excitement must be kept under wraps!
Much excitement and merriment was had in the evening when celebrated my birthday with my soon to be neighbour! Lots of cocktails and giggles!

A bit of civilisation was had with a spot of Afternoon tea at Cliveden House on Easter Sunday. Yum. That is all.

And finally today - a wet and windy day in Brighton buying new shoes!

So all in all - a vast improvement compared to 2011 - but let's be frank, that's not hard! However I have spent it with some truly lovely people and felt very special. Life it going well at the moment. Had a slightly scary moment when was "summoned" to see Dr Evilness. Spent two days basically shitting ourselves and it transpired he just wanted to "catch up". Seriously. Don't scare the crap out of us for just a chat. I do think these people forget the power they have and how they can lift or crush you in one phone call. Anyway - my liver MRI was "all fine" but I still have to have the micro-bubble ultrasound with Dr Elusive. So I assume the whatever is in my liver is still there but no worse. And I get to have a full body CT scan in a couple of weeks. It's been a while since I had a good dose of x-rays. So the usual tests and waiting for results ensues. Again.

Anyway. So that's where we are. Ooh I am adopting 2 sock monkeys from the wonderful Monkey and Squidge. Now that I am excited about.

Weeeeeeeee, tubes and pricks

Apologies followers for my crapness - bad blogger I have been. I am currently writing this from the "comfort" of a hospital bed in Windsor. Now actually I shouldn't complain as 10 days ago I would have been writing from an even less comfortable hospital bed in Slough. They call it the private wing but it still had issues. My lovely little Windsor hospital is far nicer and I am sitting in my own room with Harry Potter and the Prisoner of Azkaben on in the background having just had my night time hot chocolate!
Why am I here may be the natural question that I perhaps ought to answer. For once in the last almost 3 years it isn't directly related to the evilness. I've been battling with some back pain recently which naturally I convinced myself was going to mean that the evilness had decided to munch at my bones. Anyway then I started to feel like utter shite with a cracking temperature. I was merrily in the process of trying to fry my brain - a past time that is not really recommended if you wish to maintain a teeny bit of intelligence and bodily function. So off to the GP I went. When will I learn that this is a foolish exercise? Had I chosen to forget that I was told for a year that I had gastroenteritis when in fact the evilness was invading my bowel? Seemingly so. Note to self - do not frequent the GP surgery, do not pass go, do not collect £200.
I digress. So she thought I had a kidney infection and put me on crappy trimethoprim - for those in the know ,rather old school. 48h later I didn't want to leave my bed, had become a prune and so it was time to see the real people - off to the evilness doctor I went and promptly had my pruney knuckles rapped for not coming in sooner and for having gone to the GP. OOPS!
Short version is I was admitted and onto iv fluids, given my dear friend iv cyclizine for the nausea - which my friends, I love as apart from stopping me feeling like hell, sends me totally off my face! I have been known in A&E to have slurred to Darrell after a hit, that I was "off my tits!" when not 10 minutes earlier was turning myself inside out into a delightful cardboard emesis basin. This time it was also blended rather warmly with a shot of pethidine. Bloody brilliant! I just lay there grinning like a loon. I am a big fan of the drugs!
24 hours later, an 11pm consult and ultrasound by my urologist (I like to collect consultants you see!) it was decided that my ureteral stent was blocked and I had pyelonephritis. I was then transferred from my lovely Windsor haven to scummy Slough so that my lovely radiologist could play around with more mind altering drugs and give me a nephrostomy ASAP. It seems that a few more hours delay could be critical. FUCK. I really was rather ill. There was scary talk of sepsis and horrid consequences which naturally I chose to stick my fingers in my ears and say lalalalala and ignore!
So there I was with a tube sticking out of my back draining some really rather grim stuff out of my right kidney. On seeing that it's hardly surprising I have felt like hell. I also added 3 different iv antibiotics to the mix and then just to tick another box, a blood transfusion. Two units of finest A+ gently meandered it's way into my veins. Weird thought that it's someone else's blood. Makes you think weird things. Will I be different after? Was it a man's blood? What if they can't spell or have crap grammar? Will my use of the apostrophe be wronged forever? Whatever the result thank you to the amazing person or people that took the time to donate. You rock.
Home I was sent with the tube in place and the indignity of carrying a bag of pee around with me for the next 7 days. Mind you it does create some fun each morning when I get to observe my day-glo, post-Berocca production mooching it's way down the tube, looking like I had some sort of renal nuclear reaction.
And so here I am today. The plan was to hopefully remove the stent and also the pee tube and bag combo. And once again stupid me forgets that things generally don't follow the aforementioned plan. So I woke from another drug induced fog - amusingly as observing the 3rd drug entering my vein whilst the anaesthetist was telling me some story about horses that I never got to the end of, I said Weeeeeeeeeeeeeeeeeeeeeeeee as I drifted away into my benzo-opioid-propofol induced snooze. Classy!
I woke up and the bloody pee tube is still there. Seems I still need a stent so my crusty blocked one was taken out and a fresh new one is now settling into to its home for the next 6 months. Arse. And so pee tube is there just in case stent doesn't behave. And instead of going home and snoozing happily in my own bed without having to turn over carefully for fear of pee tube exiting my back, I'm here in my sweaty hospital bed with pee tube staring back at me, having to pee in a dish so they can measure my "output". Dignity? Really? Paper pants sorted that out earlier today - especially when I woke up after the drug snooze with them cut open! Man I should have done a spot of lady garden tending in anticipation of flashing my bits to all and sundry.
Tomorrow will bring another visit to lovely radiologist for him to check stent has read the rule book and is doing what it says on the tin, and to blast me with more X-rays. Don't X-rays cause cancer? Mm bit late for that eh? No doubt lovely radiologist will ask me about his puppy's leg issues - he has the last 2 times I have seen him before altering my recollection of reality with more drugs! However alas tomorrow is a drug free exercise. Shame as I'm quite enjoying all the pickling of my brain and the warm and fuzzies that are a bonus with the poly-pharmacy. I feel like a bit of a junkie really! Silver lining and all that.
So that's me. A stenotic ureter and we don't know why. Found incidentally on an MRI, and was minding its own business until they spotted it. Now the treatment for it is causing me more issues than the original problem. Gotta laugh at the stupidity of it all really!

In other news, me and hubby have decided that sitting around and stagnating is not an option and put our house on the market. It is our first home together but to be honest we have not had the best of times since being there (one dead dog and 2 cancer diagnoses will do that for you) and it was never meant to be our forever home. So move on we shall. We had a buyer for it 10 days after it went on the market and today had an offer accepted on a place. Eek! Fingers crossed all moves smoothly and quickly. Time for a new start and a new beginning - 30 miles nearer to the pastie Mecca.

Talking of which whilst I was battling with kidney stupidness, my oldest bestest friend gave birth to her son, who after many days of deliberating shall be henceforth known as Hector (bloody brilliant name by the way). I am thrilled for her but the irony wasn't lost on me that I was there worrying that the evilness had come back and she was bringing a new life into the world. The one thing I wish for myself more than anything. Don't get me wrong, he is gorgeous and I am so happy that I get to be a fab auntie again. Funny how two people who met at their first Saturday jobs, 23 years ago, who both married 40-something year old divorcees, have now got lives going in very different directions. It goes without saying that my dear friend the green eyed monster has been voicing his opinions over the last few days. He is quite well behaved mostly and sits quietly in the corner but every so often he jumps into the middle of the room and ruins the party. I don't mind when he sits there dribbling quiety, but when he starts lighting his farts and shouting in my face, he is just damn annoying. However I can't really control his behaviour so I just have to try and ignore him as I suspect he isn't leaving the party anytime soon given the lack of contraception that my friends seem to be partaking in.

I guess I should go now as it won't be long before it is imperative that I am woken to check my "vitals" which will be normal as I was meant to be at home now. Deep breathe otherwise my BP will be up and then they will panic!

Wakey wakey

We are feeling wonderfully relaxed after a fantastic long weekend down in our Mecca of Cornwall. It was Darrell's birthday on Friday so we booked a long weekend in a Landmark Trust property in a teeny hamlet called Coombe Valley - near Bude.

We have been there before and it is half a mile from the beach and there is no tv, no radio and no mobile signal! Bliss. Bye bye world for a few days. We had glorious weather on the saturday and I established that I am incredibly unfit on a walk along the coastal path. We walked back along this amazing beach.

Unfortunately on the way back whilst clambering over some rocks I slipped and landed on my lower back. Ouch - rather battered and bruised but was great to feel alive.

Sunday was rainy so had a brief walk and then chilled (read that as snoozed) in front of the open fire. Darrell got to be all manly and play with fires all weekend.

All in all it was wonderful.

One slight ironic thing is that (sorry to share too much) - my period that has been AWOL for the last 7 months due to the kick-ass drugs nuking my ovaries - decided to show up this weekend. Whoever thought I would be so pleased to see "the curse"!! Now this is potentially amazing news as there was the possibility that my ovaries would turn over, tuck themselves in and never wake up after the drugs. So the fact that they have decided that maybe their work isn't done is great. BUT - my body has obviously saved up all the pain etc from the 7 missing periods and condensed it into one. More ouchiness. Bastard female issues!

Now obviously there is the possibility that it really doesn't matter what my wee egg makers are up to if I can't beat the evilness. But hey - it's a start. At least there is perhaps an option. A glimmer of hope.

And hope can never be bad. Jeez - we have £6k's worth of hope shivering away at Hammersmith.

We like hope.......

Rollercoaster

Just a quick appointment he said - just to make sure I am recovering well from the chemo. Just to have a chat about my routine bloods. So I wasn't fretting at all.

Mmm how silly of me.

If you remember I was given the all clear on December 7th so I have had a month of thinking I could start to make plans without the cloud of the evilness inside me. Hope is a valuable thing when you are fighting this war. Hope is also a very high place to fall from when the Drs decide to change their minds. Again. Hope is something I don't often have and so when I am given it I hang on to it with every ounce of my soul. So when they change their minds they take my hope away - and maybe just a little of my soul.

Anyway - they have decided that the fatty thing in my liver might not be. It could be a dead tumour. The bottom line is they actually don't know. Now don't get me wrong, I know that medicine is not an exact science and imaging only gives an indication of what something might be. But - and this is a bloody great but - if you don't know then say so - don't say it is all fine. This is my life you are messing with. My hope. My soul.

So I now have to have more tests - more scans to get a better idea of what is going on. There is a big difference between a fatty lump and a dead tumour. Now yes - good that if it is a tumour it is dead - but ultimately it still means that the evilness has got to my liver - and that is not good.

I am now back to trying to get on with my life and I will deal with the results in February when I get them. I can't worry now otherwise the evilness gets another month off of me. But it is hard. It has been a crap few days - another pregnant friend to deal with; Harry my one eared cat, has renal failure; and another friend has been diagnosed with this fucking disease. Luckily hers has all been removed surgically and she doesn't need any more treatment. How wrong is it that I am jealous of her? This damn disease is trying to turn me into a jealous, jaded, cynical person and I hate that. How mad is it to be envious of someone elses cancer? How warped is that? I hate that the happiest moment of a womans life is something that destroys me every time. Is it ever going to get easier to congratulate another pregnancy? Some friends are on their second now. Don't get me wrong - I am thrilled for them but each time it takes another bit of me; takes another bit of my heart.

Will I ever get my turn?

Photo-a-Day

The more observant amongst you may have noticed a few additions to my blog layout - or not!

I have added a link so you can (hopefully) be notified by email when I add a post.

Also for the 4th year I have embarked on my Photo-a-Day project. 2009 didn't go well. I completed it in 2010 but lost my way a bit in 2011. I use it as a bit of a photo diary of my year, but also to develop my photography skills. Also it is a great way for me to meet others with the same interest. I am hoping this will be a more positive year and so my photos will reflect that. I have added a link to my images on the blog too.

My brother has joined my geekdom and gotten the photography bug - so he is doing PAD too. I can't wait to watch his skills develop this year. Mind you his images will be amazing as he lives in Oz - sunshine always improves everything!

Enjoy!

A New Angel

Sadly there is another angel watching over us today. Kristian Anderson was 36 and lost his brave fight against bowel cancer at 8am on 2nd January 2012.

Kristian's blog has been truly inspirational.

http://howthelightgetsin.net/


He had a very strong faith and I admire him for this. I find it hard to have a belief in a higher being, especially during this fight. However Kristian's faith kept him strong. He leaves behind a wife and two young sons. Any death is a tragedy but even more so when two boys will now grow up without a father. So wrong and so unfair.

Kristian campaigned successfully for the availability of the drug Erbitux in his home of Australia. It is a new "biological" drug in the war - an antibody against cancer. It is a targeted treatment but as a result very expensive. Thanks to Kristian, Australians can now receive Erbitux.

Rest well Kristian. You are with your Father now.

Happy New Year

So a new year begins. Traditionally we all think about resolutions and what we hope to achieve over the next 12 months. We also reflect on the year gone by.

2011 - what a year. It started as a year that was filled with hope and positivity. Hell, we even dared to make more long term plans. We were going to start trying for a family in September - having been good and waited the 18 months since finishing chemo. Unfortunately the evilness decided to ruin another family member's party and my wonderful father-in-law got the dreaded diagnosis whilst I was in hospital in March. Before I had my results we decided that if they were "good" then sod waiting til September. However - the evilness had other ideas and I got the news I was most dreading - it was back. And this time the long term prognosis is crap. So the rest of the year was spent going to war once more. Once more trying to kick the evilness.

We had an amazing holiday half way through chemo which was just what our souls needed. Then came the news that my liver was now affected so chemo stopped. But then more tests suggest otherwise. It would appear at the moment I am in remission.

And that is how I start 2012. Remission. Not cured - I haven't beaten this disease. I think everyone thinks that I have and I sort of feel that I am letting them down as that isn't the case. There is a very high chance that the evilness is going to come back - it is really just a matter of when.

So what do I hope for in 2012? Not to lose weight, or give up some vice or other, or go the gym more. No, my hope for 2012 is to make it through the year - alive. To be able to welcome in 2013. I'm sure not something that most people are wishing for - they just take that for granted. Nothing in my life can be taken for granted anymore. I can't really make any plans as it seems that when I do they just get taken away from me. The only hope and dream I have now is to survive.

But what the evilness can't take away from me is the love and support of my family and friends. It is the strongest thing I have and for that I am truly thankful. Without them this year would have been so much more difficult. They give me a reason to go on with this fight. I hope to be able to spend more time with them this year.

So to you all, I thank you. Please stay with me on this journey and please leave comments so I know that you are there! I wish you all a happy and healthy 2012.