Friday, 26 March 2010

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 :-)

Wednesday, 24 March 2010

(Don't) Look Back In Anger

Cast your mind back to January when this was the outlook from my kitchen window. I was only a few weeks into being what I'm currently calling 'housebound' but I'm hoping to either remove the word from my vocabulary or find something infinitely better. The very effort of coming downstairs to watch TV and certainly, the extra three steps into the kitchen was often too much for me. The currently present Absent Bloke took this photo of our back garden and our fabulous view of St Saviours Church in Larkhall.

Now, there's only so much TV a girl can watch (believe me, I've peaked) so one January Saturday, I asked AB if we could go to our local DIY store to buy a bird feeder and some bird food so at least I could sit on my sofa and watch the birdies. I can be such an Edwardian lady at times :-)

I got wrapped up and then dressed up. That was my coping mechanism. Get myself warm (with no immune system getting 'a chill' isn't an option). I then poured on the make-up and with a warm woolley hat on added a decorative scarf on top, for the sake of appearances and off we went.

Parked up at a set of traffic lights there was a lycra-clad cyclist, I imagine by his absolute white pointed goatee, he was in his late '60's/early 70's. Well bloody good on him I thought. I certainly won't be cycling around Bath in my 70's, so kudos to him. As I looked at him he motioned towards my window (remember I'm a passenger in this car). I opened the window and stuck my head out into the cold. He pointed out that the car was over the line for the traffic lights. I apologised, said to AB 'you're over the line' and turned back to acknowledge the cyclist who called me a 'sarcastic bitch'. Well, I dunno about you, but that wasn't quite the exchange I'd been expecting. I calmly asked him not to speak to me like that, to which he came back with something equally unpleasant. By now I should have realised that what he wanted was a bit of road rage, he didn't give a rats how we were parked, the problem was that firstly we were in a car and (I'm guessing, this is becoming a bit of a recurring theme) but a very nice car. Sorry for making an effort an' all that. What a prize prick. Anyway, this 'exchange' continued the length of road we were both on, with AB getting involved too.

I'm shaking just typing this now - I can't express how upsetting I found it. Anyway, we got to Homebase where I just pulled my scarf and hat off (and it was freaking cold) and walked through the store on that busy Saturday afternoon totally bald (not in the style of any of these Hollywood actresses going through 'breast cancer' who have perfect eye-lashes, eye-brows and make up but in the style of someone fairly sick with sores on their mouth and nose and the make up looking like a child who's played in her mother's make-up bag. I saw someone I knew from the theatre and didn't want to embarrass him by saying hello. I think I do the angry/empathy thing quite well no?

So this blog is really to explain where this 'anger' I have comes from. It didn't start with the diagnosis, 'why me?'. I hope I'm really not that selfish. It started with the actions of one man with an ego problem who went to war with a woman he saw in a car and that woman was too distressed with everything else in her life to cope with an exchange that took probably less than a minute, one Saturday afternoon in January 2010.

'Be kind, for everyone you meet is fighting a battle' Plato

Tuesday, 23 March 2010

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.

Sunday, 21 March 2010

Making Mountains Out of Molehills (or The Bitch Inside)

The longer in between blogging, the whiter, brighter, shinier the blank screen becomes, which is silly really, because there's a contrast button and let's face it, the page is always blank otherwise there'd be nowhere to type stuff.

I really want to use this blog to let you know how I've been feeling since my diagnosis in October and my treatment started properly in December and I don't want it to make for comfortable reading because it really hasn't been comfortable living (or longing or loving or whatever the name of this blog is).

I want you to know just how frightening life has become, how isolated I can and do feel and a whole other list of adjectives like angry, alone, terrified, scared, shocked, isolated (I've said that twice, but that's the most descriptive one, isolated, there you go, I've said it again). I know there's other people in similar situations, but this is mine, no one to really share it with. This is my shit alone.

I've also had a few messages along the lines of 'it happens to the nicest people' well hold fire whilst I stop my sides from splitting. If there's something I've been good at over the years it's hiding the fact that beneath the smiley, friendly veneer can lurk a resentful, somewhat angry bitch. More and more of you are meeting this woman. The Absent Bloke is trying to rein me in and give me excuses but I keep having a dig here and a dig there when I think/don't care if I can get away with it and not just with AB and family but with friends too. I'm pushing boundaries and I'm not sure why. Each time I do it I try and apologise quickly with grace and sincerity but what would be good was if I just kept my fat mouth shut in the first place. I know a number of you will say I'm entitled to be angry and you're damn right I am, but that's not your fault. On the other side, any energy is good, whether it's positive or negative so for that, I don't apologise. Having energy is a life-saver.

Some of you may have gathered that I'm physically not the woman I was. Not just as in bald as a coot but I now walk with a stick and am constantly breathless. This means talking on the telephone is out. If you're low on breath are you really going to sit chatting on the phone? Sorry - it's a real chore - I only speak to the doctors and nurses on the phone (and for no more than a few short minutes). I'm very grateful to have this technological age where communication is so easy by text, email and facebook. My world would be silent without them, as it is, I can get by easily by checking my phone.

And there's the other thing. Where would I have been without my phone since December? 100% radio silence. I have been unable to sit at my computer, where I am sitting this morning. Just the very act of sitting here has been too hard. I don't have a laptop so can't sit in bed 'on my lappie' and probably wouldn't have been up to it had I had one, so I have been communicating by the tiny keyboard on my phone since December (woe is me, I know).

After my diagnosis in October and the appalling way it was handled (nobody's fault, just the system) there was absolutely no support for me and (forgive me) my immediately family were in the same vacuum as me so were unable to help and support me. I was as I think I may have mentioned, isolated and terrified.

I called my Breast Cancer Nurse (BCN). She told me to ring the Breast Cancer Care forum. That's kind of a nice idea but what I needed was a living, breathing person locally to offer support. In the absence of such a person, I rang the 0808 800 6000 number and by some miracle, the lady that answered had knowledge of Bath and was able to give me some good local advice. Totally random but incredible lucky for me. She was appalled my BCN had been so 'hands off'.

She suggested I call my GP and the local NHS hospital to get the ball rolling. A lot of you will be reading this and thinking 'obviously'. I've never had a relationship with any other GP than the one I had as a child and when I was diagnosed back in February 2007, there seemed no reason to build a relationship with my GP as the connection I had with my Oncologist was so solid.

Fortunately, the ball started to roll, very slowly and it was a juddery start. An NHS BCN called me and explained why I was in so much pain. She also explained how that pain might be alleviated. Would have been good if my own BCN had bothered to do that but frankly, she's too busy fannying about the private hospital to think about the well being of a frightened patient. (Told you about the bitch inside didn't I?).

The conversation with the NHS BCN led to an introduction to a local hospice called Dorothy House and a stream of professional nurses and carers and finally, some support and relief. These things take time but the professionalism, care and dedication of these people has enabled me to look to the future and begin to enjoy some quality of life. I don't know how to paint the picture of me making that phone call - I can't begin to express how I felt at 44 years old ringing a hospice, not for my poor old parents (or even grandparents) but for me. For someone who had just graduated from university, for someone who was looking for a new start, a new career. For someone who's friends are having babies, starting new careers themselves, new relationships, buying new houses, we're the generation making a fresh start in our 40's and being ironic about the 1980's. I had seen myself up until now as on the edge of a new adventure; I'd graduated, I was looking for a job and now?

My introduction to Dorothy (Dot) House started with visits from nurses, day patient staff, physiotherapists, counsellors, therapists and even a chaplain (I'm in the 'border country' apparently, between life and death; I suggested I was closer to life and he agreed, sort of. It's important to pick and choose who can actually help in these cases.)

I was offered a place at the Day Patient Unit on a Thursday. This involves being collected at 10am and driven to the hospice, spending the day there chatting, doing crafty things (mosaics, painting plant pots), eating, having therapies, sleeping, whatever floats your boat and being brought home mid-afternoon. I thought I'd probably do it once to be polite but that was a couple of months ago and although I'd often rather stick pins in my eyes, there's a good group of people, particularly nurses and volunteers and they've become part of the team that looks after me, notices the dips in my well being and points them out to the relevant healthcarers. The day exhausts me and I sleep for hours when I get home. It's also another outlet for my inner bitch as deafness is quite prevelant there and I seem able to get away with what I think are some quite witty asides between me and the nurses although I probably shouldn't say that.

As well as giving my week structure, Dot House has sorted out things like a living allowance, blue parking badge, walking stick and other more practical solutions. Things you probably see as 'disabilty' and that they're trying to get me to see as 'ability'. It's not where I want to be and I'm not sure if I'll always need them but anything that makes life easier has to be good and for that, I am grateful even if it's not apparent.

The photo at the top is a snapshot. That means it was taken one afternoon and it took a second to take. It's not representative of how I feel. To you I look happy and relatively carefree I imagine. I am now sitting at my computer with my pyjamas on, a beanie hat and a face like an overwrought chipmunk; it's puffed up and my mouth is tiny. I saw a friend in the week and the first thing she said was 'What's up with your face?'. It's a good question. I don't know if it's the steroids, the allergic reaction I've had to the chemo (will explain that another time) or just the sheer crappiness of life right now but I'm no looker that's for sure.

If you look at my decolletage in the picture you'll see what just looks like a plaster and then near my waist a line of some decription. This is in place of the catheter I normally have in my hand. This is the upside of private health care. If I was an NHS patient I'd probably have a Hickman Line sticking out of my chest quite visibly and unnattractive. As it is I have a portacath. It's basically a permanent plug socket for drugs and blood removal. It means that I can have my treatments without the trauma of medics trying to find non-existant veins in my hand/arm. It also means I can continue to function during treatments, I can go to the loo, eat, write, wash hands etc. I'm lucky to have it and it needs to be 'flushed through' every month for the rest of my life and I'm hoping that I'll be having Herceptin for the rest of my life, so job done. One less thing to worry about.