And a very merry Christmas to you too...

You may remember I finished my chemotherapy treatment at the beginning of August and was meant to be looking forward to a period of feeling better however short-lived. As it was it just didn't happen and what followed was weeks of misery frankly, interspersed with tolerable days, many of which were spent in France.

My first trip back to the Clinic after chemo had finished I waited to find out 'how I was doing'. This suggests that the medics know and I don't. That's why we go to the doctor's to see what's wrong. We know (very few of us are hypercondriacs, GP's the world over please note). We know something's wrong, we rarely have the language to express it; so if it doesn't 'present' itself physically, it can go unrecognised. I'll come back to this rant later.

I didn't feel as well as I'd hoped but the usual tests were taken and nothing much was said.

Three weeks later I returned for more tests and had a similar experience. I explained I didn't feel as well as I'd hoped. (Nine weeks have now passed since my last chemotherapy treatment).

I was told that they have to monitor me for a full nine weeks off chemo (i.e. 12 weeks since last treatment, sorry, complicated I know). I told them I didn't feel good. They told me they needed another three weeks before they would take any action. I told them if I didn't have cancer I would be camping out in A&E for an explanation. They told me they needed another three weeks before they would take any action.

I went away and experienced 21 days of abject misery and fear (pain, aches, weakness, hot and cold sweats, sleeping around 18 hours per day. But hey, it was only (another) 21 days.

On their 'Week 9' I was beside myself. I walked into the clinic and when asked how I was I couldn't be anything better than sarcastic to this team of people who try incredibly hard to keep me alive. I think my response was along the lines of 'I feel shit but you tell me, you're in charge' and cried a a lot.

They sent me for a CT scan, mammogram and ultrasound and promised to get back to me by the end of the week, acknowledging that waiting wasn't good for me (hellooooooooo?). In copies of correspondence flying between clinics, hospitals and surgery I noted the following:

"for much of this year Carolyn has seemed in fairly good spirits but it is clear that recent worrying developments have taken quite a substantial psychological toll..."

No shit Sherlock. It's not the recent sickness, it's the relaxed, let's wait nine weeks that took the psychological toll, ho hum.

My favourite question was 'Do you feel worse/weaker/in more pain than last time' like I have a riding scale; oh yes, I'm 2% worse - no I feel shit. Shit. There's no good to feeling shit, it's shit. (Sorry Mum & Dad, potty mouth daughter).

After that things happened quickly; crucially they discovered why I felt so lousy (although I could've told them in August things weren't cock-a-hoop) so in November they took me off superdrug Herceptin and acknowledged it wasn't working. This is a bummer as this is recognised as a drug that will significantly extend your life. It's OK though, whilst having the mammo and ultra-sound the radiographer Dr G who is fab, explained that lots of people live for years without Herceptin too. A comment to her, a massive shining beacon of hope for me.

Over the next couple of weeks three really important things were said to me and I list them here in no particular order as they are each crucial to me:

"The cancer's got out of control"

This from my Oncologist ringing with the test results. AB stood in front of me physically shaking - your blogger felt relief at a diagnosis, the fear and shock was to be experienced by everyone around me.

"The medical profession has failed you at this time"

This from one of my hospice nurses, who I'd been speaking to for the last few weeks. She was initially setting to discharge me from the hospice as the expectation was I'd be able to go away and live my life for a few months/years ho ho. In hindsight she apologised (and had no need to) for not intervening sooner.

"You know your body better than we do"

This from one of my oncology nurses. 'nuff said. I later asked her how to get 'attention' without loosing my dignity. She was surprised, she didn't feel I'd lost my dignity. I said I thought walking into someone else's place of work, crying and speaking fairly bluntly was undignified. Good Lord, how low is the standard of patient behaviour in private clinics these days ;-)

There's two things at play here; firstly, the power of suggestion. An oncology team won't tell you what to expect, or even acknowledge what you're experiencing until they have the facts; everything can be explained in another way. My constant hot flushes were explained as menopause, despite me having experienced menopause three years ago (brought on early by the first lot of chemo; there's a big upside apart from the obvious, no more PMT/PMS either!).

AB was given some valuable advice early on 'Be Assertive'. Thoughout my life I've struggled with the fine line that is assertion, I generally fly from passive to aggressive without stopping to consider feelings or consequences. This isn't helpful behaviour anywhere but is potentially dangerous in a medical situation. I kept saying I'd been through menopause, I kept being told I'm 45, of course it's menopause. I knew it wasn't (hot flushes are advanced cancer symptons).

The second thing, has gone. Chemo addles your brain and I can't remember the second point, I'll come back to it when I do...

So, I've started a new load of chemotherapy and a new life extending drug called Lapatinib. All are taken orally, rather than intravenously. As with everything, swings and roundabouts. I'm no longer married to three weekly hospital appoints (they're four weekly now as I have to have a monthly bone strengthening infusion). Rather than having a massive dose of chemo and then having three weeks to recover, I take around 30 individual tablets per day every day for 2 weeks then reduce them to about 12 a day for one week; this is called the 'rest period'. Rather than 'react' to my regime, I have to 'pro-act' which means remembering what to take when, when to eat, etc.

For the first time ever, I have been physically sick with the chemo. The joy of being sick is it (like cancer) respects no bounds. So what that you're out shopping in the middle of town, if you're well enough to shop, you're well enough to vomit. Happy days and thanks for ever to Emma in Marks & Spencers in Bath for getting me a chair, glass of water, sympathy and calm (I wrote a poem to the manager by way of thanks although I'm no poet...)

Five days into my new regime I experienced so many side effects it was agreed to take me off everything and let my body settle. I won't go into how hard it was to achieve this, the above tells you nothing's simple just now.

Two days after coming off everything I woke up with something I've not had for well over a year. Energy. And, I woke up, eyes open, wide awake. This happened for five consecutive days. Dear Reader, from 4 to 7 December 2010 I was a bit like you (without the hangover maybe ;)

The downside of the energy (for there has to be) was lack of sleep - I was absolutely hyper and couldn't read as I couldn't keep my brain calm enough. The answer was to hand-write, so I've filled up a journal with my nocturnal musings on everything from having cancer, having a diverse group of peeps in my life to having an overactive brain switched on for days on end.

My sleep patterns still screwed but am now back on the medication so fighting sleep in the day and writing lots at night again, ho hum.

Meanwhile, based on the above statement about the psychological toll this is taking, I'm seeing a Consultant Clinical Psychologist; he asked me my objective. I said, I just want to know in my own head if this whole thing was preventable; it sure as hell feels like it should have been. I want to know what happened, one day in another century when my internal power supply flickered.

Living with Cancer

Hmmm, in the absence of the Absent Bloke (he's only down the road, not like he's left the postcode even, but still) just asked my nurse if this chemo will send me into remission and apparently it won't.

The Oxford English Minidictionary explains remission as:

1 The cancellation of a debt or charge

2 The reduction of a prison sentence for good behaviour

3 A temporary period during which an illness becomes less severe

Somewhat disappointing that this period can't be reduced by good behaviour but on the upside, I can behave badly without it having an impact :-)

Last week saw Caromellymac galavanting around Longleat with a group of similarly afflicted souls and a greater number of nurses and volunteers. Around 25 of us took long walks, went on picnics, went swimming, relaxing and met some birds of prey up close and personal. Photos to follow... It was a wonderful week and again, a huge thank you to all at Dot House who made it happen.

Next chemo is this Wednesday which is followed by an echocardiogram. I get all the fun jobs!

If every picture tells a story, I hate to think what this one says... Having a blog is such a good excuse to rant on about yourself, publish photos, be generally me, me, me all the time, so, here's another picture of... me! Totally irrelevant to my treatment, but so much more fun than the previous chipmunk stylee photos.

We've just been to a murder mystery party and the currently present Absent Bloke was the double-barrelled surnamed solicitor reading the will and I, as you might guess was the housekeeper/ cook/ not the murderer. I've always wanted to do a murder mystery and tonight was especially sweet as, by pure fluke, I guessed 'whodunnit'! Dunno how, just a feeling as much as anything - but very happy to win a bottle of vino which I'll save for when I can drink again, yay!

Meanwhile, last Wednesday saw my appointment with the good doctor, Dr G my oncologist. There's great news here - he's putting me back on chemotherapy! Yay! I'll be on a regime called Vinorelbine which sounds like a kind of wine to me (say it out loud). I start next Wednesday, have two weeks of treatments and then a week off. In this time I'll also have the Herceptin and bone strengthening infusion. Assuming I respond well (yes, let's!) I'll be available for lunch/coffee that third Wednesday, fab!

Meanwhile, in case you're wondering if I keep a maid's outfit in my 'dressing up box' let me put your mind at rest. I was at Dotty House a couple of weeks ago and the conversation went from Scrabble to Cluedo (everyone's favourite). I mentioned the murder/mystery party and from nowhere, this outfit appeared, so not only did I get to borrow the perfect costume, I got it for free. Love a bargain.

Dotty House doesn't have invisible strings and whilst I enjoy their services be it the nurses, physios, doctors, costume hire or craft things, someone has to pay. I'm incredibly lucky to have friends who do things to support Dorothy House and last weekend a friend ran three marathons. Let me write that again. He ran 3 marathons in 3 days. A marathon is 26 miles. Only the one he ran on the Saturday was 28 miles. In other words, over 3 days he ran at least 80 miles. All the sponsorship he gets he will donate to Dorothy House so that people like me get to enjoy/seek refuge in the services that Dotty House provides. I know we all suffer from compassion fatigue, but if you've got a spare couple of quid, please donate it to Sim - I can't imagine running a mile, let alone 80 of them and thank him from the bottom of my heart. Here's a link to his blog which tells his story. If nothing else, he's a blokey bloke and he wore a pink tee shirt at the finish line. That's worth £2 of anybody's isn't it?

Later this year the Rondo Theatre Company (RTC) who I'm involved with will be producing 'The Merry Wives of Windsor' at the Botanical Gardens in Bath and again, profit will be donated to Dotty House.

As I write this, I realise that I need to sort through some of my old clothes. I'll donate them to one of Dot's charity shops in Bath so if you fancy something in the style of Karen Millen/ Joseph/ Whistles from the last 3 years in a size 12 head to one of Dots shops soon!

This is me at the beginning of Wednesday. The cytotoxic box is covering my stomach. I'm not sure why else I'm holding it. I don't normally.

A couple of hours later I was spark out asleep on the bed whilst the Herceptin and Zoledronic Acid (bone strengthener) were being pumped into me.

Do you like my chipmunk features? The steroids do that, I'm coming off them next week so that'll be nice for the good people of Bath. I think I look a bit scary.

To recap on the treatment side of things 'cos I've been a bit remiss on that score - after starting the chemo in weekly bite size chunks before Christmas, by February the good doctor decided to give me normal size, three weekly chemos and then discovered I'd developed a very rare, allergic reaction to the chemo. This effectively meant I was being deliberately poisoned (chemotherapy) and accidentally poisoned (allergic reaction). Once again, nobody's fault, this isn't an exact science but bloodyhell I felt like shit. I kept saying 'This is so much worse than previously' and various people rationalised it for me; 'You've forgotten how bad it was.' No I haven't! I was functioning previously, now I'm asleep, housebound (I know, I'm not meant to use that word), useless (and incidentally, really pissed off most of the time).

I've not had any chemo for around five weeks which on the one hand is a bit scary but it's giving my body the chance to recover, for which I am truly grateful as being constantly poisoned is such a drag.

Next Wednesday we meet up with my Oncologist again and he will suggest a new treatment regime, which of course we hope will include chemotherapy. He's looking at less 'toxic' forms of chemo for me. I suspect 'less toxic' must in some way mean 'less effective'. I could be wrong but that would seem logical to me.

When I had my first diagnosis the treatment regime was pretty straight forward and as you know, I responded well to it. This is all a bit different but thanks for sitting it out with me. Knowing you're at my side willing me through makes a huge difference. I just wish I could put a post up saying 'Panic over, normal service resumed' but I'm not there. When I am, I will I promise.

Meanwhile, have lovely weekends. Those of you in Bath, beware aging, raging cyclists and balding chipmunks and everybody be safe and happy :-)

Decolletage? I meant chest. I could blame chemo, allergies, anything or just disappearing up my own arse but what I meant to say was look at that plaster on my chest, that's where the portacath is inserted.

It was inserted by a surgeon under general aneasthetic when I was admitted to the clinic as a day patient back in January. Before I go for my chemo/Herceptin/bone strengthening treatment I put on a tiny tube of aneasthetic so that when the nurses attach the needle I don't feel a thing. No trauma, they just pop the bugger in and away we go, whoosh - chemicals in, blood out (tick as required). Easy peasy portacath squeezy. Every chest should have one. Well maybe not but I do want you to know how much easier it makes my life. It's just like a mini-plug socket in that the needle just pops into it - it's not visible (no point posting a photo) but you can you feel it if I like you enough to let you :) There's a tiny scar, but I'm collecting chest scars - just hoping to find the right style neckline to show them off at some point.

Ooops!

It has occured to me of late, that I've not really been keeping you up to date with my treatment which is really what the blog is meant to be about so I'll try and keep it short and upbeat, although it's not been a whole load of fun so don't know how I'll go on.

After being diagnosed with secondary breast cancer in October my oncologist took me off Tamoxifen and on to a hormonal drug called Femara (or Letrozole). I was on this drug (which the pharmacist had to order in especially) from the end of October until late December. During this time, although I had been experiencing lower back ache, this 'ache' became 'pain' and spread to my hips, ribs and shoulders although, not simultaneously. Every day I awoke with a new pain and was taking a mixture of co-codamol and ibuprofen to 'manage the pain'. Unfortunately, it wasn't being managed and the effect of being in pain on a daily basis was having a pretty bad effect on my mental well-being and stability. My oncologist wanted me to be on Femara for 6 to 8 weeks to see if it was working. I could see it wasn't. I also couldn't seem to tap into any form of support and by the middle of December I was absolutely distraught. I know that from facebook/myspace/twitter/emails and texts to friends this may not have been apparent. I'm learning to ask for help and say when things aren't good, but it doesn't come naturally. I'm always happy to complain about external problems but for some reason, like to keep things happy and upbeat when it comes to me. Happy and upbeat? What was in my head?

By the time the middle of December arrived and I had an MRI Scan and CT Scan I was in immense, regular pain, very poor humour and was easily breathless due to a combination of the cancer having spread to my lung lining, being anaemic and the unknown factor that my haemoglobin levels were plummeting. To use a well worn cliche, I was loosing the will to live. It was so painful I couldn't envisage any quality of life if it was to continue like this and there seemed to be no sense of urgency with any doctors. I could feel myself deteriorating on a daily basis.

With the results of the scans came the news that I was to have chemotherapy. I started a regime of chemo in March 2007 which ran over a 30 week period, 6 treatments of FEC and 4 of Docetaxel each taken every three weeks, followed by a total of 24 (I think) Herceptins.

I felt mixed at the prospect of more chemo. Delighted on the one hand as it had worked before and I was confident it would work again. Devastated on the other that I was back in chemo again and all that brings with it. I'd 'put a brave face on' last time, easy to do when you're told it's going to kill the cancer and send you back out into the world. Not so easy to do this time around. I'd already discussed the fact I may refuse chemo but, hey, realised on balance it wasn't a smart move and I should do as I'd done before and welcome the stuff into my system to hold the bastard cancer at bay whilst we wait for other drugs, treatments and methods to send it back into remission.

Chemotherapy started on Wednesday 23 December. Great timing. I was to have a smaller dose every week, rather than the full dose every three weeks. I knew this was going to be tough. Just not how tough.

The Absent Bloke and I drove up to London that evening, knowing if we didn't do it then, we may not make it. Upon reflection, we should have stayed in Bath. Loving hindsight.

Christmas lunch, normally my favourite meal of the year was left, almost untouched on the plate. Boxing Day I got up and decided I had to work through the pain, so went out for a walk with my Dad. We got about 20 houses away before I sat on the floor (in my favourite coat) and rang James to come and collect me. I was still in a lot of pain, having an almost constant nose bleed and my stomach (despite the lack of food) was distended and incredibly painful. I was on a cocktail of almost 30 tablets each day and felt incredibly rough. This was really not as easy as it had been back in 2007 (was it 'easy' then?).

The day after Boxing Day, having been in bed asleep for most of Christmas, I decided I had to get myself to Charing Cross Hospital. Unfortunately, this being the first non-bank holiday I was not alone in this thought. I queued with the elderly, infirm, worried mothers, homeless and saw the lady behind the desk visibly pick up when someone so clearly ill stood in front of her. She put me straight through the system, people stood to give me their seats and suddenly, I started to feel a little bit more safe in this very scary world of ours.

A day of observation in the hospital actually confirmed my blood platelets had slightly improved since my chemo the previous week, my haemoglobin continued to plummet but I was OK to leave after 7 hours or so.

The following day we returned to Bath and I immediately picked up and started to feel better and this is my pattern. Chemo on a Wednesday, exhausted/sleeping Thursday to Sunday, a little more human on Monday and by Tuesday, I feel 60% of what I think is normal. Then it's Wednesday again.

This tight regime, coupled with the snow and ice we've had, means that I haven't been out of the house, on my own, since well before Christmas (you may re-call my oncologist told me 'not to fall over, you don't want to break anything' when he first diagnosed me). I don't know how many of you have been 'housebound' for an extended length of time but it's not good for the soul, not for an independent, normally active, normally healthy 'young' 44 year old soul.

Today, when my oncologist visited me, he's happy that I've come on in such leaps and bounds (I told you the chemo would work) that in February he wants me to go back onto three weekly sessions. I can't begin to explain what good news this is. It means that I will be able to re-build my strength in between treatments. I'll be able to take myself into town to meet friends for a cuppa or even lunch, to pick up some groceries, to browse the shops at a quiet time. In short, I'll be able to rejoin my life. I just hope it's been having fun whilst I've been laying so very very low.