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.

Welcome to Caromellymac's new site. Well, actually, old, unused site - but whatever, hopefully a more accessible, easier on the eye site!

I set this up last year as an alternative to my 'cancer blog' on myspace but as you see, never quite got 'round to writing anything, so let's hope this foray is more successful.

After quite a tough start to my new diagnosis, made all that little bit more difficult by the private health care system thinking the NHS was providing practical and emotional support and the NHS assuming the private health care system was, I finally got in touch with the local hospice, which sounds fairly dire but actually, they've been brilliant and have assured me that after my treatment for chemotherapy they will discharge me, with a month's notice! They have so far provided a counsellor (vital), a physio (reeeeally helpful), a chaplain (surprisingly helpful!), a day care supporter (just lovely) and crucially a 'care coordinator'. All of them very easy people to have around who, of course, are very understanding of my situation. Dorothy House rules OK!

In the absence of Dotty House as ever, my most amazing friends provided the practical, emotional and rock steady support. This came (and comes) in a variety of guises.

Top marks on every level go to my first and oldest God child, one Adam James Doggett (pictured with Tache). He's ten years of absolute love and beauty. He's also the only thing that has shaken me from sleep since the end of October and made me cry tears of pure joy.

He's a typical lad. Loves his mates, his computer games, his mum and I hazard a guess at his sister Ellie and he does his best at school. I have to 'fess up to the fact that I don't even know if he's ever discussed what he wants to do when he leaves school; they're not the kind of discussions we have on the all too rare occassions we see each other. He lives up in Lytham St Annes, around 220 miles away, so we text and we had a brilliant, too brief holiday together in London this summer.

At school a few weeks ago, they had a poetry competition. Adam's strength is maths, or so I thought. This is what he wrote:

Youth

Youth is strong
Youth is never wrong
Youth is funny
Youth is fit

Youth has the speed of a cheetah
Youth has the weight of a feather
Youth is as cheeky as a monkey
Youth can jump futher than a frog

Youth is always at the top of the list
Youth thinks before his actions
Youth is born to be best
Youth is never sad
Youth is young at heart.

Adam Doggett (10).

Needless to say, it's made it into a book called 'Poems from Lancashire' that will be published shortly and a copy will be held in the British Library.

A posting from facebook brought the next bout of love induced tears. Just a rant from a bloke (coincidentally, Adam's mum's fella Michael):

Just read your blog, Mrs and I've come the the conclusion that bones are crap. We would be better off without them. If we didn't have bones we'd be puddles of jelly and puddles of jelly can't fight each other. The worst a puddle of jelly could do to another puddle of jelly is flop on top of it (and that could be quite nice) and there probably wouldn't be religion because you can't crucify a puddle of jelly and make it a martyr. If we didn't have bones I wouldn't have broken the one in my leg when I was 14 and I wouldn't have screamed like the front row of a Boyzone concert in front of my mates and you wouldn't be so poorly. So, I'm voting bones out. End of rant ;-)

The final one (for today, keep 'em coming!) is an email I was awake to receive at 1.47am one fine December morning:

ts late, am in bed reading something I would love to be able to have written to you so am sending it to you anyway and hope it gives you strength. . See u monday fer a pint n a pie.!! xx
"Now the days stretch before you with the dryness and sameness of desert dunes. And in this season of grief we who love you have become invisible to you. Our words worry the empty air around you and you can sense no meaning in our speech.
Yet we are here. We are still here. Our hearts ache to support you.
We are always loving you.
You are not alone. "

Sent from my BlackBerry® wireless device

From Maya Angelou's book 'Letter to my Daughter'.

Friends are the family you choose and I have the best in the world!

Finally, friends Penny and Linda came over at the weekend to do the deed of head-shaving prior to the all important 2.5 weeks from first chemo treatment.

Three years ago, my oncologist Dr R told me my hair would fall out after 2.5 weeks of a pretty harsh chemo regime (not the one I'm now on) and he was exactly right, to the day and my gorgeous hairdresser Jo shaved my head for me that day. A couple of days later, I was completely and utterly bald as a coot, marvelling at the accuracy of such detail.

This year, Jo was working but kindly loaned me some clippers from the salon so we could do a No 1. Penny did the honours with hair cutting (and should she ever leave the corporate world, she knows her true vocation!) and Linda held my hand and between laughter and tears told me I looked fab at every stage of the cut. The Absent Bloke got the task of actually shaving my head. There's a thing he didn't think he'd be called upon to do on 12 April 1997 when we did the old 'in sickness and in health' stuff.

Four days later I've still got a George Michael style 6 o'clock shadow on my still not bald pate. Here's a site I probably should have checked before I took such drastic action and for those of you without the time to read it, I may experience hair loss or thinning. Then again I may not. Ooops :D