Wednesday 20 January 2010

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.

4 comments:

  1. I can't imagine how tough things have been, but that is really good news and I'm looking forward to meeting you in town xxx

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  2. Dear Zena warrior women,
    I admit, I did not fully understand the depth of you situation over christmas and January. The decision to undergo chemo again must have been an almost impossible task, obviously taking into account the ferocity of your treatment. Glad to hear you are bashing that crap cancer over the head.
    Thank you so much for having the strength to take time out to talk about your big battle.
    Love and hugs, Al xxxxxxx

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  3. Oh luvvie, I had no idea just how bad things were for you. I knew it must've been horrible but didn't know you were so terribly ill and feeling so bad. I'm pleased that at least AB was around for you.

    Really hoping and praying that you get some strength back between treatments now that they're moving to 3 week cycles.

    Poor darling. You are so strong to be able to cope with all of this and to blog about it too. We love you lots. Sx

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  4. It is very hard but good to know the extent of what you're going through dearest, and I admire you so very much for your honesty and strength in getting through this and writing it out. It's also really good to read you're casting off the 'happy and upbeat' exterior...let all the nastiness of all kinds just come on out, it can only do you good, I say. And that is the most important thing :)
    Loving you xxxxxxx

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