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.