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.

It just gets better

I'm still reeling from the somewhat shocking, but quite frankly, fucking fabulous news that at the moment I have kicked the evilness into touch. I have had a celebratory glass of fizzy pop which went straight to my head due to me not having drunk a drop since the evilness came back. Brilliant.

Anyway, on Thursday I got a text message from one of my bestest friends, who lives in New Zealand. She has unfortunately also been battling with the evilness for the last 4 years. She has had multiple surgeries and has just finished 6 months of chemo. Ironic that we were both enduring the kick-ass drugs on opposite sides of the world. But if looking for the silver lining, at least we could support each other, and our partners also had someone to compare notes with.

Anyway, I digress. Her text was to tell me the bloody brilliant news that her latest MRI scan was clear. She too has told the evilness to piss off. I am absolutely over the moon. It has been a dreadful year for us both and it is just wonderful that we have both gone into remission at the same time. We can see in 2012 in a much better way now and kiss 2011 goodbye.

Truly the best Christmas present ever. Love you and miss you loads S xxxx

Haagen-Dazs, Leicester Square - just like old times

Something

There are times when I struggle to stay strong in the fight and this is one of them. There are times when I need a break; to be cut some slack; some good news. It's not too much to ask is it? Well apparently it is.
So I had a routine CT scan on Monday. Pretty crap when they say to you - "you've done this before haven't you?". Yup, 6 scans later I'm familiar with the process. But no-one should have to be an expert in CT scan cancer monitoring.
Anyway, since then I've been in bed feeling shite. It's the first time in all my chemo that I've felt this bad. However the evilness dr thinks I'm just dehydrated so need to drink more. Tricky when you're asleep but hey ho.

So got the CT results last night. All clear HURRAH.

Oh apart from the something on my liver.

Something.

Which when pushed means the fucking evilness has spread to my liver despite the kick-ass drugs. Not good. Fuck, fuck, fuck.

So I am being referred to the liver team at Hammersmith. Joy. We went there for the IVF stuff and it's not the most pleasant place - I mean next to a prison! Anyway, they are going to have a meeting to discuss me and decide what to do. The most likely thing is surgery to remove it and then who knows. It is not great that the evilness is winning the war and there is only one last chemo drug left to try. And it may not be an option anyway as some tumours mutate so the drug is ineffectual. They have tested my tumour but can't find the results. Bloody brilliant. Let's hope they find them.

So that is me. Facing more surgery and a very uncertain future. In fact it feels right now that I don't have a future. It's all a bit dark. I have lots of love and support from amazing people that believe I can beat this. However the reality is that the 5 year survival rate for recurrent bowel cancer is 5%. Pretty shit eh? Hard to stay positive knowing that and given my current situation. Obviously I will just carry on fighting but at dark times like this it's hard to see what the point is. Feeling crappy most of the time for what? I hate the fact that I have to fight to stay alive - something most people just take for granted. No, not for me. It's a massive uphill battle. Why can't things be simple?

Sigh

Buongiorno

What a crazy 2 weeks! Round 3 wasn't too bad.
Decided to take advantage of feeling vaguely normal on the 2nd week of each chemo fortnight and booked a week in Rome.

View of the Vatican from Castel Sant' Angelo

Cheeky pic in the Sistine Chapel

We had a great time. Ate lots, walked lots, saw the sights and generally tried to forget the evilness and have some quality time together. It was great to be "normal" and kick back - something we have badly needed. Need to have a bit of a carb break now - bit of pasta and pizza overload! Although all the walking meant I have lost some weight - hurrah! It seems that exercise really does work. Who knew!

Went to my bestest friend's little boy's 1st birthday party the day after we got back. A real mixed emotion day. Lovely as it was his party but heartbreaking for me as they got married the week before us and so we should be in the same boat. And we couldn't be farther from it, and may never get there. Truly the hardest part of this journey it has to be said. My ovaries are still hanging in there which is amazing. They couldn't be arsed last time I had chemo. And we have 3 wee embryos frozen at Hammersmith hospital - that was another emotional rollercoaster to get them. Not forgetting the £6K we had to find. Bizarre to think we have 3 teeny babies sat there - gender already determined, that we may never need or have the opportunity to use. Kinda pickles the mind if you think too much on it. So I tend not to. It's all a bit much for me to cope with right now - so I tend to just pop it all in a box for another time.

Back to earth this week with a bump as chemo round 4 yesterday. Still - that's a third done. Baby steps and all that. Am drinking 2L of water a day as that is meant to help - I assume flushes all the crap out of my system from the kick-ass drugs and mullered evil cells (hopefully!). Still going with the FFH - it seems to be helping, although I am moulting a lot so who knows how much I will lose. I have added to my head scarf stash so am ready if baldiness comes my way - although I will be devastated.

Been a tough few days support-wise - or should I say, lack thereof. Been let down by people that are thinking of themselves and not me. I know it sounds a bit unreasonable of me to feel this way but some people in my life have an amazing capacity to make all my issues, all about them. Tremendous. Sod providing me any support if they can't cope with it. At least my amazing husband and friends are there for me. Horrible how true colours are revealed at times like this.

Anyway, I'm back now, new season of CSI Miami is back (slight closet crush on Horatio!), and have lots of dinners with friends lined up next week, for once I come through the chemo fog. More food. Joy!

Every Little Helps

So as I lie here wide awake at 2.25am due to the damn steroids, I figured I may swell use mtpy time wisely!
Had treatment 3 today so am nearly a quarter of the way there. My brother came along which is great and crap as it means he is flying home to Oz tomorrow. There will be tears at Heathrow. That place always reminds me of my favourite film "Love Actually". The arrivals gate is one of the happiest places I know but conversely the departure gate is so sad. It is never good to be waving someone off there. And I'm faced with the knowledge that other than on Skype, I don't know when I will be seeing him again. Arse, I'm crying now writing this, I've got no chance tomorrow. He is the best member of my family but he lives on the other side of the world. I love my sister-in-law dearly, but man why did she have to be an Ozzie? To utilise an antipodean term - I'm gonna miss you heaps bruv.
Anyway, wiping the tears and snot away; plenty of that to be had tomorrow. The snipathon and calendar planning is going well. We have firemen volunteers for the calendar and I get to photograph them. Cancer does occasionally have it's perks! Who knew?!
I have posted the Just Giving link for those that may wish to contribute if you can't make the hair cutting marathon or are took far away for the calendar, or just want to do your bit. I have blatantly stolen the Tesco strap line but it's true! Thank you in anticipation. It all means so much. Love you all loads.



David Cubbon is fundraising for Bowel Cancer UK

Round 2

The battle continues and this time hasn't been as bad as I expected (yet!). Monday chemo was quite a social affair as my brother is back from Oz for a couple of weeks. He wanted to be my chemo buddy and I think it helped him. Chemo has the image of making people bald, skinny and miserable and to see it as something different is a good thing. The oncology unit is an amazingly positive place - negativity is banned. The crazy Ghanaian sister Regina helps - her laugh is infectious.

Managed the cold cap again - it is still a FFH but I coped better this time - kept my head supported so I didn't get a really sore neck. Bizarrely I sent the boys out for a Skinny Caramel Frappucino as I had a craving. So there I am with -5C FFH on my head, slurping a frozen coffee - feeling quite comfy. I think I am officially odd! Most women with the FHH are under blankets with hot water bottles. Go figure!

The FFH before it goes on my head - yes that is ice.

The week has been a bit dull with no concerts but hey - gotta pace myself! I haven't felt as weird nor as sicky as last time - had more anti-emetics this time. They say the Avastin (my extra kick ass drug that I had this time), doesn't cause sickness as it is a monoclonal antibody. The science geeks amongst you will know that this is a more targeted treatment and hence less side effects. I suspect it is bloody expensive - looking forward to seeing the bill for this round! However - if it does what it says on the tin the cost is worth it (she says, thankful for private health care insurance!).

It has been awesome to have my brother here and I think for him it has helped him understand what I am going through and that I am just getting on with my life, whilst battling cancer as a bit of a hobby! The evilness is not allowed to become all consuming. It is an aspect of me; part of me; but it is not ALL of me. I am still Claire; blonde; vet type; wife; friend; daughter etc. I just happen to have cancer. Fighting it is something that I am doing but it is not all I am doing. I am still trying to live my life - after all my life will still be there after chemo finishes so I need to keep it going. I think people tend to forget that about me - so I get asked a lot about how I am feeling but not much about the other aspects of what I am up to. Well, actually, some people ask but others don't. After all, if you don't ask how I am feeling then I can't possibly answer with something you don't want to deal with - "Pretty shit thanks" - eek, now what do you say? Easier not to ask isn't it?! Doesn't mean that I'm not feeling shit though does it - but it makes it easier for you to live with. Just remember that no matter how crap you may be feeling about all of this - it is a lot worse for me as I am actually living it.

Oops bit of a mini rant there - sorry. Actually, no I'm not - it has to be said to help understanding. Whilst I may be pretty positive and upbeat, but it isn't always that way.

Quite brilliantly I am having my hair cut tomorrow. When I made the appointment 8 weeks ago I didn't know whether there would actually be any hair to cut. The Irinotecan (kick ass drug that causes hair loss in 30% of cases) starts to cause loss 3-4w after treatment starts so I will know any day whether the FFH is doing what it should, and whether Mrs Jack Sparrow is going to make an appearance. I guess I just have to wait and see.

Defence against the Dark Arts

Sitting here on the sofa watching the genius crap that is Made in Chelsea, feeling like crap! Taken extra anti-emetics but no joy. Hopefully will feel better tomorrow.

So what a day - day 1, round 1 of aggressive chemo. I must say I have a complaint to make to the Trade Description people....Cold Cap my arse........Fucking Freezing Helmet is a better description!

This is clearly NOT a cap! Minus 5 degrees is NOT cold. Surely the appearance and the ice on my hair after sporting this look for 5 hours should indicate that all descriptive terminology is somewhat misleading. I demand a refund!
However this ordeal is in a vain (see what I did there?!) attempt to save my hair as losing it is a real possibility this time. I know it isn't the end of the world but I have spent the last 37 years covering up my sticky out ears so it's a look I am keen to avoid. And as if the freezing, sorry cold, wasn't bad enough - my hair was covered in conditioner beforehand and I can't wash it for 24 hours - I am a crusty nauseous mess! Gorgeous. Still I get to sleep on silk pillowcases now - how posh am I?
So day 1 DONE. Who knows what the next 2 weeks will offer up - we have mouth ulcers, constipation, diarrhoea and nausea to look forward to. Maybe I should play side-effect bingo! Altohugh a full house is not a good thing in this game.