Tuesday, February 28, 2006

50 things that make me happy

I read today that you should come up with a list of 50 things that make you happy. I thought this would be a challenge for me. I mean, actually, a real challenge - something I would find difficult since nothing very much seems to make me happy anymore.

So, my initial aim is to come up with 10 things: 10 not naff things.

1) Expeditions out with David (when I can be bothered to shake off the ennui)
2) Vacations with David (haven't done this for quite a while but we have some planned this year)
3) Sunny days
4) Days off work - that lovely feeling of having the day stretch out in front of you to do with whatever you wish
5) A good evening at guides
6) A good evening with guiders and no guides!
7) Doing stuff with my brother
8) Romantic (but not sad) films
9) Time with friends
10) Being on Lindisfarne

Whew! Did it!
Not too naff I hope? Just a bit naff perhaps. The question is, can I possibly come up with 40 more? That was quite an effort and I think 40 more might seriously tax me. I might be reduced to writing things like "Watching 'Firefly'".....

Friday, February 24, 2006


So, here I am. A year ago I knew I had cancer, today I'm pretty confident I do not. But what a journey to get here. It has been the proverbial rollercoaster ride. Mostly it's been bad. But being alive to tell the tale is not bad - that is good. So why am I not more pleased? Excited? Happy?
People keep saying how I'm still healing - physically and mentally. I just feel like it has gone on for so long and will continue to go on. I can't see where the end is - I assume there is one. There had better be one.

So, a year ago yesterday I sat in that horrid Rheumatology corridor surrounded by piles of coats and scarves because it was so cold and waited to see Miss Roche. And after she had seen me and broken the news I was herded off to meet Alison Jones, the Oncology Consultant for the first time. I am exceedingly glad that I did meet her then because she managed to help me feel that there was a way to deal with this and by golly she was going to get on with it. Supremely confident, she knew what she was doing, expected the best for her patients and damn well got it. Of course, I think she got more that she bargined for with me....
This, of course, was the occasion on which she blithely announced that she "didn't do sick" and that they had lots of medications at their disposal to prevent the sickness from the chemotherapy drugs. Sadly, it transpired that my body was going to be so stressed out by these poisons that regardless of what meds. they gave me, I was still throwing up.....
The aim of the chemotherapy was to try and shrink the lump, which was a 6cm, grade two cancer - invasive ductal cancer with mucinous feature. And was tethered to the chest wall and skin. It was bad. It was probably inoperable at that stage although noone said that.
The chemotherapy drugs were to be 4 courses of AC (doxorubicin and cyclophosphamide) followed by 4 courses of Taxotere. It would take six months for all these, each one 3 weeks apart. I would be sick and nauseous, my hair would fall out, I would lose weight. But, hopefully it would shrink the lump and draw it away from the chest wall. It wouldn't shrink it enough that they wouldn't have to do the mastectomy - but it would allow them to do the mastectomy.
I was sent away for more tests at this point - to make sure the cancer hadn't spread anywhere else in my body: chest x-ray, liver ultrasound, bone scan, breast and head MRI. Alison Jones said quite confidently at this point that she didn't think it had spread. She would turn out to be right.
I can't write this emotionally - because I had no emotions at this point. I was numb. And I still am as I think about it...

Wednesday, February 22, 2006

So trimensley tired

Brownies and guides are utterly exhausting......
I am cream-crackered. But at least I've been utterly absorbed in something else for a couple of hours. Supervising collage-making, tidying up after collage-making, singing songs about crazy mooses (meece?).

In other news, I survived the mammogram this morning and, compared to every other damn thing they've done to me, it was pretty mimimal. I really could have done without the technician asking me if they were doing both breasts when I arrived. I just looked at her and my face crumpled and I finally managed to say 'I had a right mastectomy six months ago'. I wish I had had the presence of mind to say 'well, unless you have my right breast tucked away in a cupboard somewhere, I seriously doubt it. Last I knew it was being disected by docs in white coats with microscopes and they weren't planning on returning it.' Sadly, I was let down by more damn tears. I think I must be in a serious state of permanent dehydration due to the eye leakage.
I was quite disappointed by this: I mean, it shows a complete lack of tact and respect for what I've been through. I think after everything I shouldn't have to explain to all and sundry that I only have one breast. And I was very disappointed by her reaction - she did that justifying herself apology. If that had been me and I'd put my foot that firmly in a place it didn't belong, and I'd reduced someone to tears, I would have just been outright apologising. "I'm so sorry I've upset you." Now, to be fair, it was not just foot-in-mouth disease in this case; the consultant had given no details on the form as to what she wanted so the technician did have to ask me and that's OK and I understand. But an unconditional apology would have been nice.

Bedtime, this knackered guider needs her beauty-sleep (or, in my case, hair growing sleep!)

Tuesday, February 21, 2006

SMIH again!

[Flu still has not redeemed itself......Feel better soon, Elaine!]

Argh! Don't do this to me! Don't leave it up to me! I can't take responsibility.
Do I feel bad enough now? What if I feel worse later in the week? I won't dare call twice - I'd feel too guilty...
You don't sound like you're capable of pronouncing 'coherent conversation', never mind holding one with me....

I survived last week but Thursday is *IT*. The day, one year ago, I sat in a little hospital office and heard the words: 'I'm afraid it isn't good news: it is cancer'. Thank you Nicola Roche for your straightforward honesty; for looking me in the face and telling it like it was. For not um-ing or ah-ing or being uncomfortable or staring at your toes.

I didn't cry. Then.

I think I said: 'That's a bit of bugger.' Yorkshire understatement at it's best. I sat there staring at a metal [I wrote 'mental' the first time - WTF?], lockable closet in the corner that had stuff piled up on top of it. And I thought 'This cannot be true, because if it were true I could not cope. It must be the most awful nightmare I've ever had.'

It was no dream.
But it was the start of the nightmare.

Wednesday, February 15, 2006

Once upon a time, last year

I'm not sure I want to do this: go to this place, but I also feel like I do: like I have to.
A year ago today I woke up and in great trepidation, with wobbly legs and shaking hands I made my way to the hospital to the breast clinic. Just the name of the clinic frightened me - and sitting in that waiting area before my appointment. I can't capture or share with you the fear I felt. I think some part of me knew that it was bad; that it was cancer.
I felt like I couldn't breathe, like my hands were going to shake themselves off my wrists; although when I looked at them I couldn't see them trembling at all. And I sat there outwardly calm, next to my father who had come down to London to be with me. What he was feeling, I have no idea but he must have been frightened too.
In the weeks leading up to the appointment I was knowing, I was sure, it was going to be bad - I don't think I thought the word 'cancer' but I knew it was something bad.
So they examined me and explained they needed to do some other things to be able to tell what the lump was. The other things being an ultrasound and a fine needle aspiration (using a needle to take a sample of cells from the lump to see what it is). I was pretty close to panic now - I asked him what it *could* be, I asked him this question several times but he wouldn't answer it - he just kept repeating what they were going to do. As if I were some sort of imbecile. I just wanted him to give me some hope that there were things that it could be that weren't cancer. But in retrospect I think that he thought it was cancer and couldn't say that and couldn't tell me it was something else. By this point my father had come into the room to hear what the doctor had to say. After the doctor wouldn't/couldn't answer my question
I lost it,
I screamed at him.
And what I screamed wasn't the best thing I could have said: "I feel like I'm speaking a foreign language!". This wasn't the most tactful given that the doctor was Sri Lankan........ but I didn't say it to be unkind or make some comment about his race - I simply felt like there was no communication going on.

As if I was saying words that made no sense.
I burst into hysterical tears in my fathers arms at this point. Things seemed bad, but I didn't know how bad, I didn't know how to cope because there was nothing concrete to cope with yet. (Later, things were bad, but not as bad as that because at least I knew.)

Just fear.

Everything was so out of my control, I had no idea where things could go, I was completely out of my depth in a place I didn't understand. I didn't know how hospitals worked (not in a practical sense) - people in medicine seem to think in a very specific way. And it's different to the way I think...and feel.
One of the nurses rescued the doctor off at this point and took us off to another room - she tried to answer the question the doctor wouldn't but not very convincingly. Or, not enough to convince me who somehow knew; even if I couldn't admit it.

So, I was sent to have an ultrasound done - bits of paper, forms, go to this department on this floor. Change into this gown, sit and shiver with anxiety and wait, wait, wait. Wait to see if you're sick with a potentially fatal illness. And while you're here, you get to be surrounded by happy women with swollen bellies and I'm wondering what they're thinking I'm there for because it's not my belly that swollen; it's my breast. What I'm growing won't be born into the world in six months, three months, any months.
The ultrasound turned into having a biopsy done. The doctor doing the ultrasound looked and said he wanted to do it while he could see what was going on. I was trying so hard to be calm at this point but I was lying there crying while he did the ultrasound. Tears rolling down my cheeks and, when he announced his desire for the biopsy, the hysterical sobbing(?), wailing, keening began. I was sitting there naked on my top half and my father holding me (like the child I had been) while I cried and, meanwhile, the doctor compulsively asks me if I'm OK, over and over again; and every time he asks, I cry harder, and still he kept asking: like it were some kind of tic. My adrenaline levels were so high that I was bouncing from one fit of panic to another. The world was out of control.
Apparently, the doctor claimed, they gave me a local area anaesthetic before he took the biopsy sample. I didn't notice too much anaesthetic effect myself - whichever bit of me he anaesthetised was not the bit he took the sample from because I *screamed* and practically hit the ceiling when he did it. At this point he announced that he wasn't going to try and take the second biopsy sample: the man finally got wise.
I couldn't tell you how painful it was: my adrenaline was so high that my every nerve was jangling like a hundred bells. I think a bug could have bit me and I would have screamed. (It was more painful than that.)
We got to go home after that - walking wounded. I felt like I'd been run over, squashed flat, jumped on, assaulted. With instructions to return the following week. I went home and huddled under a blanket on the sofa and tried to blot out the world. My dad rang my mum in the States and suggested she be here for the appointment the following week. And so, bruised and scarred and scared I waited.
And so, that was the start, a start. The start of my journey through the last twelve months. Not the start of the cancer because that had been there, sneakily corrupting me for an unknowable amount of time - and that's why cancer is scary.

Monday, February 13, 2006


Flu needs to See Me In Hell! (Thank you, Etiquette Grrls).
Elaine has flu when I'm Having A Bad Week. A year ago on Wednesday was the first hospital appointment when I was hysterical (again) and they did the biopsy. (maybe I'll tell that story on Wednesday) And It Was Bad. And it is bad - I had a few more hysterics last night, this morning, this afternoon.....bad.....
Elaine, please feel better soon (not for selfish reasons but I do hope you feel better soon).
And you, dear, sweet, kind, blog will have to help me....
It's like a reprise of everything I felt a year ago and somehow more. Like I hadn't had time or space to deal with all those emotions and now they're coming at me, catching up.


Well, this week last year was when it all began in earnest. And I can still feel the fear, the adrenaline - the feeling of being out of control: swept up into an overwhelmed, tumbling, confused state.

Sunday, February 12, 2006

The evil witch of a bitch from hell

reared her ugly head this weekend.

I hate myself when I get like this - I didn't used to be quite so intentionally a bitch. I could feel myself overreacting to something simple - making something uncomplicated into something it wasn't......What, am I trying to make everyone else feel as bad as me?? Fuck knows.

We were away and visiting people this weekend so I managed not to spend it feeling utterly miserable. But now I'm home again - where I wanted to be - and I can feel it settling on me again.....

I thought I had lots to say but the inertia stops me....

I'm tired - I didn't sleep well last night - David snored and pinched my side of the bed so he could reach his water in the night, which meant I couldn't reach mine :( How is that fair? Not only could I not reach my water but I felt all wrong being on the other side of the bed and was awake in the night with rushing thoughts.

More nails are growing out and digging into the sides of my fingers.... :(

I miss my mum - I ought to call her but I don't feel like I can speak to her without saying how sad I am and I feel bad about that. I haven't spoken to my brother for his birthday - I am such a bad person. I haven't put my birthday invitations in envelopes and sent them yet......I'm so hopeless.....

But I have daffodils and hyacinths - that'll fix everything....

Wednesday, February 08, 2006

Compulsive listening

Is listening to the same 3 songs over and over a symptom of depression?
Fucking hot again - the flushes have gone mad again - 25 yesterday and I reckon pretty much the same today. And they're at the level of throwing off at least one, if not two, layers of clothing.....
I really thought they'd started to improve - I so enjoyed not waking in the night and not sweating (sorry, perspiring - no - this is sweat) over and over. It just leaves me feeling so disgusting. All I can wear are these wicking fabric clothing, otherwise I'm just saturated, clammy and cold for hours.
I thought I was feeling better, but I'm not so sure now. Was that person laughing and cracking jokes this afternoon, me? How can that be me? How can someone who's been where I've been be that person? Is that who I want to be anyway?
Must go to sleep, should have gone hours ago - God, I'm so destructive. I jst make life hard for myself - I'll find it hard to get up in the morning now and then I'll be later for work than I want and I'll be rushing to have breakfast and do my exercises (which I haven't done fully for the last two days because I've had to leave the house early)
Elaine reminds me that I don't have to be perfect - that sometimes 'good enough' will do but I find that so hard to remember. Perfection is wired into me - or the desire for it - I don't know where that comes from. If I could track that down then maybe I could start to deconstruct it - but I don't know. It's too deeply seated.
My aim for tomorrow (virtually today): be good enough and no more.
I'll try.

Depression and Reflexology

So, Elaine thinks I may have some sort of depression (Reactive depression?) but I refused to see the psych person to be assessed, so nothing official. (I think official depression is probably much worse than just feeling sad or 'melancholic') I think one person in a family at a time on anti-depressants is enough.
If I stop being able to function then I might change my mind - or have it changed for me but feeling miserable and sad is not enough to convince me. (Masochist!) Well, these are real feelings occuring because of real things that have happened to me and I don't see throwing pills at them is really the answer. Talking to Elaine is, and I'm doing that and she is confident that we will sort it out in time. So there..... (Cheer up, you bugger!)
Sun's out today so I don't feel so bad. I bought some hyacynth bulbs the day before yesterday and some daffodils so hopefully the green and the scent will help me to feel a little better.
(Plus my wellies: for my birthday I'm getting these)
This morning was reflexology - much the nicest thing I've done at the Haven - she was quite chatty and understanding and personable. It was very relaxing although I could feel when she found the spots in my feet where stuff had built up. I was quite impressed when a couple of times she mentioned specific areas of my body and they were places I had problems: my right shoulder (perhaps not surprisingly) and my left eye - my weakest which has been bothering me recently. V. Interesting. I'm not sure I'm a convert but I did feel quite tired and drained afterwards and my feet do feel a little less tingly. I'll give that another shot. I like her anyway so that's good.
Definitely feeling much better today compared with the weekend and Monday. It's as if having Elaine recognise and name depression made it less overwhelming.....

Sunday, February 05, 2006

Too sad - I'm not dysfunctional - I can do normal, real-life things (if a little slowly) but I just feel sad so much of the time.
I think I upset David trying to explain things to him this afternoon - it makes him feel bad that he can't really do anything to make it better.
I'm not sure if it's getting worse.
My mum said to me on IM this other evening that she was finding it hard as it came round to the "anniversary" (my word, not hers) and that made me feel bad too. I know it's not my fault but it makes me feel sad when other people are upset/sad. I don't want people to feel like that - especially when it's sort of over me....
AJ asked if I wanted to see the plastic surgeon last time I saw her - I said no. Quite frankly, unless he can perform miracles, then what's the point. I don't want to be a piece of patchwork, held together with duct tape with other bits of me squadged around to make do. Piss off - I'm not humpty dumpty. Or maybe I am - can't be put together again.
Things are not right and I'm scared.
And the hot flushes are back with a vengeance.
Poor me.
Sobs etc.
"Just fucking get on with it!" "Life is shit - deal with it!"

Friday, February 03, 2006

What I'm listening to

Coldplay - X&Y album:
especially Talk and Speed of sound
Frou Frou - Must be dreaming
R.E.M. - Great beyond
Athlete - Wires
Sondheim - soundtrack to 'Company':
especially Marry me a little and Barcelona

What's the links???
Not sure - maudlin probably....

Frou Frou and R.E.M. are essential to getting out the door in the morning. 'Pushing elephants up stairs' is obviously something I can relate to.....
10 impossible things before breakfast - and why not?

I have to say for the record that Mighty Girl made me honk with laughter this morning - for the first time in ages. (That's me laughing for the first time in ages - not that she hasn't been funny)

(Note to self: shut up, make dinner)

In Pieces

I'm OK - I'm OK - I'm winning - I get to win this - cancer loses - you don't get this girl.

SO why can't I stop crying? Does every day have to start with tears? It feels like it will never be right.
My body is better but I'm mentally scarred - well, I'm bodily scarred too. I'm broken. I broke. And they couldn't fix me - they had to take part of me away. They had to break me more. How can I ever be right again?
And this is winning? I won by losing?
I broke and I don't know who I am anymore - I don't know what I want any more and I can't trust myself - I'm a proven liability now - I break and go wrong - how do you trust that?
Deficient, untrustworthy, mutilated, broken, NOT GOOD ENOUGH, not good enough

How can I ever be good enough again?

Wednesday, February 01, 2006

Damn you cancer!

I am so pissed off with myself at the moment. I feel like I can't do anything right.
And sometimes I feel ok and sometimes.....shoddy.
The 'hots' are back and they haven't even started the Zoladex yet.
Did all this happen to me?? Sometimes I think it must have been a dream because I can't fathom this. I sat for months saying 'This can't be happening because I can't believe it'.. There is a world of difference between choosing to believe something ('I don't believe this') and having the capacity to believe - the ability to comprehend - to absorb - to create meaning (because you can't believe something that is meaningless.)
And I think that is what I am doing now - trying to work out the 'meaning' of all this. I can't have done all this and have it not *mean* something, have everything simply be the same as it ever was. Especially since what was before wasn't up to all that much anyway.
I want change but I don't feel strong enough for it yet - but I'm frightened that I never will be.