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.