The no good, very bad three weeks

So far, I've been sick a lot, I've slept a lot and I have a white blood cell count of 0.65.

That's the short version.

Fentanyl. This is a controlled substance. An opiate pain-killer. You have to sign at the pharmacy in order to be given it. It's a patch that you stick on your skin and it gradually releases the drug over 3 days and then you stick on a new one. Goody. The Princess Oncologist prescribed, I thought 'great' - don't have to keep taking pills all the time - it releases gradually so you don't get an up and down effect every 4-6 hours. Oh, and by the by, you can get a few side effects when you start it - nausea, sickness, drowsiness, anxiety. But you get used to it in 7-10 days and they stop.

Hohohohohohohohoho - have you met me, Princess Oncologist??
The first day I had the patch on I was virtually comatose. I couldn't stay awake, I couldn't keep my eyes open, when people spoke to me it was like I was in a fog and I thought I was saying normal things to them but I'm not too sure I was. And I'd be sleeping (if you can call it that) and I'd suddenly wake up because I felt like I'd just stopped breathing - you know that sudden catching of the breath and breathing hard? And that scared the crap out of me. And then I was nauseous - continuously but without the actual relief of throwing up. The Dear Other and my Papa were so worried about me that they rang the Macmillan Team and my nurse came out to see me.

'Oh yes', she said, 'Fentanyl will do this - but after 7-10 days it will be much better'. And phoned in a prescription for Cyclazine to my GP. Cyclazine. Yes, improves the nausea but, makes you drowsy. I spend more time sleeping/zonked-out.

Also, unnamed side-effect - strange dreams at night. Perhaps connected to the anxiety. I wake up and never want to sleep at night again.

So, this is how I spend my last weekend before starting chemo again. I am *very* cross. Or do I mean upset? Thanks to the Princess Oncologist I spent the last small amount of time before I was wiped out by chemo being ill anyway. Instead of going out and doing something nice with the Dear Other. Instead of going to the Bluebell Wood at Coton Manor Gardens. Which I really love and wanted to do and now I've missed it and I may never get another chance. If I didn't feel so shit I'd be raging. Instead I'm just crying. I think I thought I'd finally have the courage to do the whole proposing thing - since the Dear Other obviously prefers to wait until.....what? Until I'm dead? I have no idea.

So, that was 3 weeks ago - I think. And 21 days later - guess what? The patches still make me drowsy and I've done plenty of throwing up and I never want to eat food again. Or smell it. Dear Lord, please don't make me have to smell it. Or talk about it. The Dear Other and my Papa will keep asking if I'd like this or that or the other and it makes me not want to eat a solitary thing. Except, having an empty stomach makes me queasy too. So I have to force myself to have something. Ugh.

I had the first chemo about 10 days ago. They managed the get a canula in. I was remarkably calm about it all. Amazingly. They filled me up with anti-sickness steroids beforehand and I was fine the day after. The second day after I was horribly queasy and throwing up. And, of course, they'd sent me home with more steroids and the useless anti-sickness drug Domperidone. Which does precisely *nothing* for me. And I refused to take the steroids because they make me anxious and agitated. Seriously. Even now (probably from the Fentanyl) everything seems *LOUD*. Pots and pans in the other room. The Dear Other walking around. The phone ringing. It makes me start and my heart start pounding as if someone just set off the burglar alarm - in my earhole. The other day, one of my neighbours was dropped off outside by a friend and they were chatting, their kids screeching, the car still running - agitation from me, whilst trying to relax and sleep. Suddenly, someone accidentally leans on the horn of the car briefly - I scream. I felt like I'd literally hit the ceiling with shock. So, I can't take anything else that will make me more anxious.....I just can't. So, Macmillan nurse calls in script for Ondansetron. Which seems to work.
Since then, each Fentanyl patch seems to have caused nausea and often actually being sick. The damn thing means that 2 days out of 3 I'm feeling shit or at am at least sleeping. And my shoulder stills hurts anyway. Not as *much* - I'll give them that; but it's not some magic thing. Plus, since starting the patches half my lower lip and gum and chin have gone numb. Which is weird. And irritating. Very irritating.

My chemo cycle is a slightly odd one. Each cycle actually has 2 parts. You have the first go with 2 drugs and then 8 days later you have another 'top-up' of just one of the drugs. So I went in on Friday to have the 'top-up'. They took bloods first to see how I was reacting and surprise!!! My blood counts were too low to give me the chemo. In 8 days my neutrophils (the part of the white bloods cell count that fights infection, I believe) had gone from 2.49 to 0.65. Not good at all. They won't give chemo unless that count is over 1. When I had neutropaenic sepsis in 2005 after my very first round of chemo I think I was down to 0.1 or 0.2 at one point. But still, not far off. However, I didn't have a fever or a sore throat or any other obvious infection so they just sent me home. I, of course, was very worried because it was all feeling a little deja-vu; and I Do Not Want to end up in the hospital again. I Do Not Want to be on that scary ward with all the cancer patients or in isolation again. Or to have Neutropaenic Sepsis again.
I'm still worried, to be honest. I feel totally wiped out and weak and tired. Having a wash utterly exhausts me. Yesterday my Papa spent half an hour combing the mats and tangles out of my hair - because it had been pulled up on top of my head for over a week and was an utter rats nest. It's got to come off - be cut really short again because I can't cope with it; but I'm not up to going out to the hairdressers. Or probably even managing to sit there for an hour while they cut it. I'm starting to feel like just grabbing the scissors and hacking it off myself. Except, of course, my shoulder wouldn't let me get my right arm up for long enough to do it.

When I'm not zonked out, unable to keep my eyes open I read a bit. The Sweet Camden Lass is keeping me stocked up with books - hoorah! I am being very careful not to read her books when I think throwing up is on the cards. Coz that would be tragic. And rude.
In the last 3 weeks, other than 2 trips to the chemosuite where the Dear Other drove me there, I have been out of the house precisely twice. For little walks round the square outside my flat. I knew it would likely get like this eventually - I hadn't counted on it happening straightaway.

So, pretty crap. That's how I'd describe the current state of affairs. I have no appetite, I sleep a great deal, I throw up, I panic about eating and start at noises, I read, I can't bring myself to even try knitting - I just....don't seem to want to, I cry every time I have a wash, I don't go out (have to avoid any germy people anyway), I cry every time I have to go to the hospital, my shoulder and neck hurt despite the Fentanyl, I've thrown up paracetamol twice, I wear my pyjamas for days, my hair's a disaster, I feel utterly disconnected, my face has no capacity for expression - or that's how it feels; like it can't even pretend a smile; paralysed, oh, and I have bald spot the size of a penny on my head - odd, I can only lie on my back comfortably - but I want to curl up on my side; into a tiny ball, I rock when I feel too bad; like a crazy person and sometimes I just wish this would all end now - that I just wouldn't wake up tomorrow. Done. Dusted. And then some days are better and I don't think that.

I don't think I'm doing too well really. Sorry. But I'll try to keep going Winston (and the rest of y'all), I'll try.

Where I beg

Cancer related things are kicking my butt at the moment.
After months of jollying along, the big ol' sad has caught up with me again. Mostly because Arimidex is *hurting* at the moment. My lower back and hip joints *hurt*. Of the 'I'm uncomfortable standing, sitting and lying down' variety. Of the ibuprofen and paracetamol are not really cutting it pain-killing-wise at the moment. Of the 'only boiling heat seems to dull the pain enough to sleep' variety. There are only so many nights and days you can go through without starting to turn into some insane, about to eff and blind at anyone and everyone type of person.
And at moments like that my brain gets locked down into panic-mode. And all I can think is that the medication isn't working; the cancer is eating away my pelvis and spine and the end is nigh - woe is me - etc, etc.
And I scare myself when I get like that. I start to worry that I'm going to accidentally kill myself by taking too many painkillers - just because I got to that point where I was so desperate to make the pain stop for just a moment that I took another dose. I'm not saying I'm about to do that - in fact I'm bloody careful not to; but I can see so clearly how you could end up there.
I know I'm going to have to call my breast care nurse and at least get some sleeping/relaxant stuff from her. But I'm just so scared that they're going to whisk me in to have tests done and I'm going to end up not being able to go out to the States to be with my mum and my brother for Christmas. And we've booked the flights. And the insurance companies either won't insure me for anything cancer-related or they won't cover cancellation and curtailment. Either way it will be money wasted. And I won't get to have old-school Christmas.
Hate This.
The other morning the sun was shining so brightly but it was really cold - quite a rarity here; and I was so torn. It was beautiful but it made me sad. And I thought - I don't want to love like this; here, in this life of mine. But I can't go back to my old life. And I can't change the fact I have cancer. Wherever I go; whatever I change; I can't change that. If I do something new or different then I'm just dragging cancer off to the new and different spot with me. It doesn't go. It's the cartoon/old movie irons around the ankles.
Second verse, same as the first.
The other night I got home and just ended up crying and saying 'please'. Over and over and over again. Begging. With God, with the Universe; with the wind and the cloud and the rain and the snow and the ocean - with every wave in the sea. Just 'please' - please let the last four years have been a dream. That 'worst nightmare I've ever had' that was my first thought when they said it was cancer. Please. Please let this not be. Please. Please. I don't know how to ask any more nicely. I don't know how to be any better; any more deserving.
My miracle. Please.
Or maybe - if this has to be real - could I live in the dreamworld instead. Shut down this external existence and just live in dreams.
Please.

Please.

To chop or not to chop....

::sigh::
I'm getting my hair cut tomorrow. The last time I had it cut was in February 2005, a week before my first AC chemo treatment. It's been growing since the end of 2008. It looks like this now:
And people keep saying how pretty it is, I shouldn't have it cut, etc, etc. Bit the truth is that I generally have it up 24 hours a day. I get too hot to have all that hair down my back - especially whilst I'm trying to sleep.
But I do think it's pretty - actually, despite all the time it took to get used to it; despite how hard I tried to *not* like it - I love my ringlets.
And I don't know what it will do if it's cut - will there still be ringlets? Or will they be gone? Maybe just wavy, or even straight again? I will be gutted if it doesn't curl like this again.
::sigh::
I 'joked' when all my hair fell out that I would shave my head every year to commemorate the whole ordeal but there was an essence of honesty there. I didn't want to get *attached* to have hair again. And, of course, it may go again if, oh, ok, when we get to the hardhitting chemos again. I don't want to die with no hair. I want you all to remember me as some Pre-Raphaelite, intriguing beauty..... with bounteous ringlets. OK? Is it a deal?
::sigh::
So, I don't know what I'm going to have done to it tomorrow. I keep warning people that I may just have a centimetre trimmed off it - I can't cope with expectations. But I just fear that I'm going to weep and weep as he cuts it. Not about having this hair cut off. Just, for everything. For the fact that I didn't cry last time. For the fact that it will go again one day. For everything. And I'm going to look like an insane-woman.... the dear Sweet Camden Lass will be there too - for moral support and mopping up duties in between having *her* hair cut and 'done'..... could be interesting for all.....
::sigh::
Please could I *not* be a wet, teary blanket in front of any more people I don't know.....I'd appreciate that.
Freebie photo:
My hair on a less attractive day on holiday in Scotland. Please allow your attention to be drawn to the owl, whose name I have forgotten. Sorry Mr. Wol....

Instead of sleeping

Hot, I'm hot, and it's 2 in the morning and I'm tired, but I have that wakeful mind thing going on....not helpful. I hate it when I don't even know what I'm thinking *about*; or even what I'm trying *not* to think about. Something just doesn't feel right.
Perhaps it's because I've yet another extra week off chemo - which I know I need for my stomach and rest-of digestive tract to recover - but I'm scared what the next CT scan will show. I've had 2 elongated cycles in a row and I won't know for another 3 weeks if the medication is at the right level yet. And I worry that the disrupted timescale will mean things will no longer be stable. That cancer will be growing again. Because eventually it will be - that's inevitable now - well, not inevitable that it will grow *now; but that it will one day. One day. These are not the sorts of things you are supposed to be waiting for; they're not the 'one day' dreams I should be having. When I wasn't feeling well (at all well) last weekend (very icky) my mind immediately leapt about 4 million miles from where I was - thinking that the medication dosage would have to be decreased again already - to thinking that The Precious Oncologist would declare that Xeloda was no longer working and there were no other options and I was going to start the dying process. Palliative care next step. And my imagination was running wild (my imagination should seriously be lopped off) - trying to decide what music to have playing at my funeral; would I be buried or cremated? And if I was cremated then where would I like my ashes? And thinking of the people who would be there and how they would feel and about how would the Dear Other cope. And goodness me, I felt Very Sad and Cried (for a change). The wee small hours in combination with bathroom and not knowing if you're going to be sick, have diarrhoea, or both - plus heartburn and gas - these things are really Not A Good Combination and cause mental anguish. I feel better now - but, yet again, I am amazed by where my head goes when I'm not feeling well. I feel now like that can't possibly have been my head and my mental processes - and that is strange.
I'd forgotten, a bit, quite how simply dreadful it is to feel continuously nauseous. That feeling when you start to wish you'd just be sick and then it would be over and you could start feeling better - or feeling something other than nauseous anyway. I'd forgotten the fact that it eats away at your self-control; at the holding-it-together part of you. I didn't feel like I handled it as well as last time (2005 time, I mean) - I think that was because last time I could keep telling myself that I only had to go through it eight times (four times for the nausea-inducing chemo anyway) but now, now there is no set end. It could be many, many, many times. And it's even more miserable to have to hope that it will be many, many, many times.
Sorry, back to Boring. Dull and repetitive. I *want* to be saying other things. I *want* to have something more interesting to say. But, I was told that 'I want never gets'. And, in true-child fashion, I can only respond 'that's not fair!' Blah, blah, blah. Perhaps that's what my blogposts will be henceforth: I shall simply type [Blah, blah, blah] and you can just move on to the next blog in your blogroll.

Follow me, follow me down to the wallow

I have an 'upper respiratory tract infection' according to The Princess Oncologist - but it didn't impress her.......I think you have to neutropaenic and have no white blood cell count before you can impress her. In other words, I have a cold and am whingey. Blah - my eyes do not want to be open but if I lie down then I can't really breathe - bummer. Wah!
I'm also supposed to be making quiche Lorraine, brownies and my super-duper, best ever ragu-for-lasagne for next weekend. Oh, and putting the towels on to wash. None of which are appealing massively to me since they would require getting out of bed and I have a cold! Wah! Want to wallow - despite the fact that I can breathe better and would have less heartburn if I didn't recline......
Oh, and we're going to dinner with friends tonight - I'm going to be *such* good company - not. My eyes won't stop watering - note to self: don't wear eye makeup, you will rub eyes and look like a panda all evening......
The Oncologist is now The Princess or Precious Oncologist and I want a t-shirt that proclaims "Your oncologist may be great but mine is a Princess" or alternatively "mine has style". This would amuse her and in my book, an amused oncologist is one who's on your side (my side). Plus, I'm an amusing person; The Dear Other has proclaimed it so.
I made The Dear Other cry - mean ol' me. As you will have noticed, I've not exactly been happy-happy, joy-joy recently and I got cross with him and was shouty (which I *never* do! This is true - I don't do conflict and shouting and getting mad with The Dear Other) and then I got all cry-y and said sad things about Not Being Happy and then he cried because he wanted to make it all better and he couldn't and it made him sad. And I felt really mean and horrid for making him sad because I don't want him to be sad. Wah. Tears all round with an extra helping of guilt on the side for me. I feel a bit better now. Don't know why. Don't know how long it will last.
I have to go hat shopping for my friend's wedding - Sweet Camden Lass has promised to come with me and she doesn't know it but she alone will be responsible for making sure I don't look like a complete 'nana. I trust her implicitly - I also think she knows where to get hats *from*. Me, I'd go to John Lewis and that would be it - and maybe that's the correct place to go, but I'm not really sure myself.

Great big tears

Hello.
Me here.
Still here.
I really don't know what to say.
There's not bad news, it's just the same old overwhelming sadness.
And that crying thing where you lie on a bathroom floor and can't breathe through the sobbing.

I saw old, good friends at the weekend. And I saw photos from my past and I just couldn't deal with it. Photographs of me with this bright smile of *real* contentment and happiness; with eyes that shone with innocence; at ease with myself and the world; with endless possibilities and opportunities and potential - and I could not see myself in her. I feel like my smiles, my eyes are never like that any more - they hold shadows and tears - there is a tension in them constantly. And I feel like I have no possibilities or opportunities - no potential anymore. Any happiness, any laughter is tainted, is qualified.
One photo is burned onto my memory now - a simple one, I'm standing at a friends door - but the smile and the eyes - I look so open, so trusting, so happy. I feel like I've done that girl wrong, I've betrayed her. I've let her down. Destroyed her. And she didn't deserve that - she should have been anything she wanted.
And so I retreated and sat on the floor of a bathroom and wept in the arms of a friend who, by rights, should have been crying in my arms - great shuddering, sobbing tears that shake your whole body - that leave you with those funny, sharp intakes of breath long after the tears have subsided.
I don't want this. I don't want to live with this. I don't want to die from this.
I'm so sorry, I didn't mean for this to happen to you, to me, to *her* - the other me. I'm sorry.

Maelstrom

What do you do when you're hyperventillating over lunch, and your hair?
Seriously, I do not know what to do.
Not eat lunch because it's simply too difficult to decide what to eat - when I don't want anything anyway and I'm just thinking about it because it's 'lunchtime' and I'll probably end up with another headache later if I don't eat. I'm not saying that I'm not hungry - I have no idea if I'm hungry or not anymore. I often find myself eating if someone else puts it down in front of me even when I didn't think I was hungry. I *cannot* do anything if someone asks me what I want for dinner later - the answer is 'nothing' and if they suggest things then it makes me feel ill. Not sick - just, sort of sickened - like they've brought up some unspeakable topic. But I'll probably eat it if it's put in front of me. Or some of it. And yet I've still mananged to put back on all the weight I lost with the chemo in 2005. Which is depressing, because that was the one thing I brought away with me from that - at least I'd lost that weight that I could stand to lose.
Food has become the enemy again I suppose.
And I get tied up in a quandry of what *should* I eat, what *ought* I to eat. Lots of fibre and fruits and vegetables are the *shoulds* and *oughts* - which can prove a bad idea if my stomach is heading diarrhoea-wards. But not eating them isn't good for a body either - and mine will tell me in no uncertain terms. Seriously, if I could farm out my digestive tract to some other source, I bloody would.
And my hair, is so long now, and people say it's pretty and it probably is; but I can't even stand to wash it or myself most days. (which is pretty shameful) The room or the water or both is/are never the right temperature for whatever I am. Plus, what's the point of having nice hair when it spends all day and all night pulled back from my face and neck because it makes me hot and claustrophobic? But I'm scared to have it cut off again - which is silly, because it grows really fast anyway - I don't want the curls to go, I don't want to re-adapt to different hair again. And If I have it cut off I want someone one who knows how the hell to deal with ringletty, curly hair. I mean, is bloody brilliant, because there aren't as many people with curly hair out there as there are with straight hair; so it goes without saying that most hairdressers will have more experience with straighter hair. And what if I have it cut so it's not such a mess, then I'll have to stop being such a mess in my dress and everything else. It'll raise the stakes.
And this all seems so miniscule, so irreverant when there are so many worse things out in the world.
What the hell is happening to me? Why does this stuff that would once have hardly caught my attention seem like the end of the world? Why has this combination of things reduced me to standing at the back door hyperventilating? And what does it all mean anyway? beacause if it meant only what it is on the surface then I wouldn't be in a state about it so this has got to be about something else really. So tired now and I've barely been up today.

Lonely.....I'm sure there's a song about that

Apologies for the statelite-link pause in blogging - my laptop was in crisis and lost the ability to run on mains power or charge the battery. Whaaaa! I now have a laptop on loan (thank you!) and am waiting for a new one to materialise - well, be delivered. Soon. I hope. Hint hint delivery people.
It was shocking how cut off I felt without you all!!! You were missed! :)
I'm feeling quite lonely at the moment.
My brother came over from the States to visit me for a week - which was lovely. It's really nice when people come to visit me; it's just as nice to see them when I go visiting them, but it's special when they come to me. :) So we did a bunch of touristy things around London - like the Eye and walking along the river and the crack at Tate Modern and the opticians in Hampstead (What? You haven't heard of them? Huh, who would have thought...) I also took him to the hospital with me and he distracted me in the chemosuite when they were taking my bloods (not too much of a bloodbath this time, which is strangely disappointing) and he came along to my clinic appointment where he met my Oncologist (hello!); I tried to tell him that she could be scary but he is made of braver stuff than me (plus it was a rather unexciting appointment - nothing for me to report and not a lot for her to report - although I did get another tick in my notes - do I get a reward if I get a certain number of ticks? A chocolate brownie perhaps?) I was glad that he came along and saw where I was being treated and met the people who look after me. I hope it made him feel that I was in good hands and made sure he didn't feel out of the loop. I think things can be more frightening when you don't really know what's going on. Plus, he has the ability to make me laugh at all sorts of things. He went back to our old home in Leeds for the weekend and came back with this drawing of a cartoon character he'd invented way back when - Soup-Man! Who swam around in soup and had a straw for sucking it up and a propeller for manouveuring and stirring the soup around - it was hilarious - and such a wonderful example of unrestrained imagination.......
We also went to Spamalot and to see the Japanese Drummers - Yamato. Both really good - but the drumming was bloody brilliant - I was really glad he'd insisted we go (even if I did have a worrying few minutes on arrival at the theatre where I thought I might end up spending the evening in the Ladies!!!) You could feel the vibrations from the drums and it was done with such splashes of humour. We were on the 3rd row so had a really good closeup view - although from the side. So if you get a chance to see them - go like a shot!
But now he's gone home again. And I miss him. And it reminds me that I feel pretty lonely here. Which makes me sad. I end up feeling like I'm making up reasons to go out - so I just don't. What's the point? What am I going to do? Going and seeing galleries and shows and the like on your own isn't so much fun. Does this mean I should go back to work? But the Dear Other doesn't really want me to - then I'll spend less time with him and I'll have to be in London more of the time. Plus, I'm not really feeling like working. But sitting around on my own isn't good for me either. But I have no enthusiasm for doing lots of the stuff I *could* be doing. ::sigh:: Whatever.
It's hard. Life is hard at the moment. It's been worse, mind, but still not brilliant. And all sorts of things are casting their shadow at the moment - I have 2 hen weekends and consequently 2 weddings to go to over the next few months. None of them are mine. Out of all of my friends I am the person who has been with their partner the longest - so how come everyone gets to get married before me? And there's a complicated answer in there; involving the necessity for the Dear Other and I to be living in the same house in the same town and currently that means me leaving London for a place where I know even fewer people and have even less to do at my doorstep; not to mention a long way between me and the hospital and my Oncologist and her team. And I'm not prepared to move away from them - I think they're bloody good at their jobs, I think they care fantastically for their patients, I think they're incredibly patient with me (I'm not known for being easygoing) and why would I leave a top London teaching hospital with big name Doctors for one in a Midlands market-town (which is perfectly adequate, I'm sure).
So, no, I'm not the one in the flouncy dress (not my style anyway - I'd probably be a bit more imaginative and personal. Plus, I currently couldn't wear pretty shoes because my feet would die and fall off - getting married in trainers wasn't quite the effect I had in mind.) Blah - all irrelevant anyway - apart from the shoes bit - I *will* have to wear shoes to go to other people's weddings. Maybe my feet will die and fall off anyway.
What a long and very wingey post this is turning out to be - sorry about that.
BTW - I'm linked to in a Blogher post for my Letter to My Body post - I'm very honoured but I suspect that it's not the sort of thing people want to read. This is quite a depressing blog at times and cancer is a scary topic - I guess I don't blame you for avoiding it - I understand the discomfort and fear that even the word 'cancer' can evoke; but remember, if you do avoid or ignore this blog, you're ignoring me and I'm real and what's happening to me is real and I'm afraid it doesn't become any less real if you don't read about it......
Time to stop blathering now - thank you to all you people out there who read me all the time, through the good and less good and the frankly awful - you're the tops and it really makes my day when you drop me a line or comment to tell me you're there and then I know I'm not so alone.

How do I keep from singing?

Well, I've cheered up a bit - but that's not saying much since my inclination to get out of bed very much this weekend has been hovering around the nil part of the scale.
But I have finished slating myself for the time being. You know, you say these things and it gets it out of your brain a bit. For a time, anyway.
What would I say if were able to think something *positive* about myself?

I'd be grateful for the lungs and vocal chords that trained for over 5 years to produce fine sounds.
I'd be grateful for the body I had.
Um, that might be it.
Well, you can't say I didn't try....

The Dear Other is determined to appear in this blog post - now he's telling me I have an evil look on my face since I'm appeasing him. There's no satisfying...... ;)

The end. :)

Pretties

So, apparently you're not going to let me have the 'Idiot Grrrl' t-shirt....you're *no* fun. Can I have one that says 'Sometime Idiot Grrrl'? No? You're obviously all too nice to me! Thank you. :)

My papa bought me some flowers to cheer me up (I should have taken the picture of them when they were at their zenith - I failed to do so - but I still think they look pretty):

Papa's are pretty great.... :)







I had to shoot off to my Hometown-in-the-North last week to attend the funeral of an old friend's mother - very sad and sudden; but I was glad to be able to support my friend. As I said to her 'of course we [all our old friendship circle] would be here'. The following day I went home - to my old home, our old house. And just walking through the door reduced me to tears - it was the smell you see. It still smelt the same. It smelt like home. I cried for days gone by, I cried for who I was, I cried for the family we used to be - all in the same place. That house felt lonesome - as if it were an abandoned being. It used to be alive and full of us but we aren't there any more, but neither has it become home to some other family. It's a little bit like we just all walked out one day; it's a snapshot of lives. In my room there are part-used bottles of shampoo and toothbrushes - as if I expected to be back at any moment. Similarly, in the bathroom there are some of my mama's perfumes and make-up. When I was younger, a favourite book was "Return to Gone-Away" by Elizabeth Enright - and the story centred around a long shut-up house that was put back to rights; and I loved the descriptions of the house; because it was still full of the belongings of the former owner - it was historical and romantic (I don't mean slushy romance - the other kind). And here, I have my own version of the Villa Caprice (I think that was its' name) - and I find it sad, not exciting.
So, I just walked around the house - it was like I was really seeing the space for the first time in a long time; and the memories were strange. I felt like I was seeing ghosts; echoes of myself; but not me. Like I was a foreigner to myself. I looked at the little things; smelt the distinctive smell inside the drawers of the big...(gosh, I don't know what you call it - but on the bottom it's like a chest of drawers then it has a sloped, fold-down desk-top with little drawers and pigeon holes inside and finally on top of that is a glass fronted cabinet. Anyone know what I mean???) I don't know why it has a particular smell; but it does - and I just opened the top two drawers a crack to smell inside them (why yes, I do do some strange things.....). And I went upstairs and the feel of the banister under my hand reduced me to tears - so familiar and known. I could recognise that feel blindfolded - I would know it. And the height of the steps - they're shallow, shallower than any other stairs I'm familiar with. And I sat at the desk in my room, I shut the door and sat in there for the first time in years - like I spent the majority of my teenage years - and I sat there and conjured up as many memories as I could - and of course I cried some more. I think of those high-school years as pretty terrible, but there were good times too. A birthday sleep-over with a cake that my dear friend, Jo, made for me. Decorating the collar for "Akhnaten" (have I mentioned my Youth Opera days? I don't think I have - I sang opera for around 7 years growing up. We were ambitious - which is why I have the sung the role of Meritaten in Philip Glass's Akhnaten. The majority of the opera is in Egyptian and Hebrew - it's pretty fantastic music though. Anyway, end diversion.) And endless reading - I'll confess I didn't have highbrow reading tendencies - the Chalet School, the Famous Five, Malcolm Saville, Cherry Ames, Nancy Drew.
So, t'was all strange and also cathartic. I've been quite trepidatious about visiting before; but I feel...clearer now....less like it's a weight around my neck. Which is good, because I'm going to have to clear out my room eventually....
But! Have just remembered the point of this story (brain, come back, all is forgiven...) I brought back my rabbit picture. My mum drew it and I think it's beautiful. I don't know why I haven't brought it back long before now - it was as if it had never occurred to me that I could bring things out of that museum...... My mama is so talented, I think you'll agree:

Hope - how to

I was asked recently: how do I find hope?
Some days, to be honest, I simply don't. Some days I simply feel done over by life and that I'm not prepared to hope because I tried that after my first round of treatment and got kicked in shins when it came back. It was totally devastating because I'd started to believe that maybe I would be one of the people who came out the other side.
I suppose in some ways it's a fact that I don't know what to hope *for* anymore....I can't hope to 'get better'; I can hope to live as long as I can and to be productive and able for as much of that time as possible. But even that is difficult to contemplate - because I don't know what to aim for - a year? 5 years? 10 years? I have no idea and I don't think anyone *knows* - they can guess, but I don't want to know that because it won't be long enough. And anyway, I feel so cheated, even if I live for years(!) I have to live a half-life; a life that revolves around the treatment necessary to give me that time.
A life where I don't get to have children; and I keep unearthing just how much I wanted that. Somewhere out there, in potential-land, is a little girl who was supposed to be my daughter and she was going to be called Anna, after my Great Grandmother and sometimes I can feel her, I can feel myself holding her as if she were already here. But she never will be. Not with me, not mine.
And it's not just about me - it's about the fact that I wanted to see the Dear Other as a father - cancer hasn't just cheated me; it's cheated him too.
::crying now::
Hateful cancer.
I want to give you words of hope - I want you to hope. I feel better when other people are feeling hope for themselves - because I want them, I want you, I want someone out there to make it. If I can't be the person who beats cancer then I want you to be that person.

False face must hide....

At some point I may have to admit to myself that I've been depressed for most of my life.
Because I think doing that might mean that I could stop feeling like I'm just not trying hard enough to be happy. That maybe it's not my fault. That maybe this is something that I've inherited along with the family silver. Or not, who knows.
I think that I have always felt at odds with the rest of the world. I think I met unkindness from my peers early on in life and I could not understand why. I think it's hard to realise that not everyone feels the way you do.
It seems like there is an expectation that childhood is 'the best time of your life'; that children are innocent and untouched and unaware of sadness and badness in life. And I think there (was) a feeling that children/young people aren't/can't be depressed. I think this attitude is changing - I think today there is much more awareness of it. I don't think there was so much in the 1970s.
I think I felt sad and didn't know it. Or didn't know that it was possible to change that. I think I did know that not everyone seemed to be that way - because I think I felt that it was my fault; my problem; that if I were able to be like other people then I'd feel happy.
I also think all these terms are horribly subjective; and that it's very hard to know how other people feel. I don't think I'm the only person in the world who puts of the 'I'm OK' face and lies and lies. (What's that quotation I'm trying to think of? Something from Shakespeare; possibly from Hamlet?)
I also fear that my memories are being tainted by the way I feel now and are not a true representation. Interesting conundrum, eh?

How's that for a serious entry at the end of NaBloPoMo?
One day left - light and fluffy? Or bad and serious? You choose.

Baby, when you're gone.....

I've been finding myself feeling a bit panic-y whilst I've been here. I keep seeing photos of myself - graduation photos, baby photos etc and I think it makes me realise that I will be missed when I'm no longer here. And that makes me feel terrible. It makes me feel so guilty that I will cause people to mourn; to feel so terribly sad. Perhaps that seems odd - perhaps it seems a bit big-headed. But it makes me feel terribly bad about myself. I don't want to be the cause of pain and sorrow.
I met my brother's girlfriend yesterday - she seems so nice. I like her a lot and I am so glad that my brother has found someone so great; someone else who sees how fantastic he is; someone who'll be there for him when I cannot be. I keep feeling like I see glimpses of the future - but a future that I may not be a part of.
So, I appear to have managed a week of being slightly upbeat before it all tumbled down again.
Oughts and shoulds and wishes all mishmashing together.
Plus, I have no knitting or yarn with me and I don't know what to do with my hands, never mind my head.
I know, I know; 'good situation', 'could be worse' - all of that. I suppose I just feel like the situation will be worse in time and therefore I might as well be there already.
What's the answer? A furry cat to heat me up beyond all endurance? I don't know anymore.

Am still breathing

BTW - the *previous* post title should be sung to the tune of the refrain from from Rock the Casbah by The Clash. Of course. It just occurred to me that this might not be obvious and that perhaps the whole rest of the world isn't in my head hearing me hum. (Why the hell not!? You don't know what you're missing!)
I'm currently chortling because the last two things I downloaded from I-tunes are 'Somewhere over the Rainbow' sung by Judy Garland and then 'Rock the Casbah' by The Clash. Am amused.

I have been slack and have been hiding and weeping etc and generally feeling sorry for myself and convinced that am dying. Am not, or at least according to the medic types I'm not.

Bad old me has not judged the caption competition - you nearly all chickened out in the wake of Snoskred's quite alarmingly imaginative entry. Sadly, I don't think a single of her suggestions were correct - or perhaps I mean, fortunately..... ;) So I am withholding the genuine instruction card - unless someone begs me for it. There were also valiant entries from Pocketina and Dorothy. All of these did spark and smile and perhaps also a guffaw (fahbulous word, darlink).
So I think all deserve prizes so those of you who email me your address will receive something spiffing in the mail - although I'm not sure what yet. Obviously it ought to be a share of all those diamonds I'm acquiring. Sadly, I'm too greedy for that and I'm saving them to decorate my bathroom anyway.....

Toodles. And get singing along to The Clash!

Doing the ostrich

Sorry, I've run out of good humour this evening.
I did laugh at the entries - and raised my eyebrows - and went 'eh?' in an amused way but tonight I'm full of the panics so I can't quite laugh.
Tonight I have 2 more days left on this cycle of the Xeloda and I'm realising how many questions I haven't asked. And I'm still too scared of the answers to ask them.
I haven't asked if this drug is going to help the cancer in the lungs and the lymph system. There seemed to be much more talk about treating the cancer in the bones and not much reference to the rest so I'm left wondering if that's because there's not much they can do about that.
I'm scared that I'm being lied to - by omission, rather than directly. Or, not lied to; but protected from the full truth of matters.
It may very well be true that this drug can control cancer in the bones for quite a while; but if it goes wild elsewhere in me in the meantime then that may not mean very much.
My oncologist referred to being able to help me get early retirement on ill-health grounds (which at the age of 30 is very scary) but is that an indirect way of hinting that I don't have a lot of time?
The problem to my mind is that if the cancer is in my lymph system then it could be setting up shop anywhere. And I keep hearing the word 'aggressive' in my head; which was how someone referred to my cancer this week - not my doctor, someone else.
I am so scared.
And I'm just convinced that next week they're going to tell me there's no point in continuing this treatment because it's in too much of my body. Which is completely based on fantasy in my head because they've done no new tests; there's no new data. Just panic. Just fear. Just me running out of time.
I'm really angry about being so optimistic last time. I tried to be really positive. I told myself that I could beat the cancer; that I would win. And I believed that was an option. Now I feel like that was total naivety - based on the impressions I had from what people were saying to me. No-one ever said that there was a bigger likelihood of it coming back than of it not coming back and that's what I feel like they all thought. No-one has said it but I feel like a chump for trying to even be optimistic. Because now it has come back; I'm crushed. I'm absolutely shattered by this. And not only do I not want to die but I feel *stupid* for ever wittering on at people about 'if it hasn't come back in five years'. For ever giving other people the impression that I would beat it. Stupid, stupid, stupid.
And I'm still focusing on the little things. I'm weeping over the fact that I'll never have children when I should be weeping over the fact I'll probably die before my parents.
Well, I'm weeping over that too.
And don't tell me to be/think positive tonight - maybe tomorrow - but not tonight. I feel like I can't be positive because I tried that and cancer still came back - and I can not keep taking the blows of hopes dashed.

My blog posts are better than your blog posts - or are they?

This is going to be a boring post full of banal things like:
"I can't believe I'm doing this again.
It is *sooooo* not fair that I have cancer.
I hate chemotherapy."
And other things that end in:
Whaaaaaa!

And,
Hmmmm, I've said it all.

Whaaaaa!

On a deeper and more meaningful level:
Whaaaaa!

In other news, my brother had the audacity to go and see Eddie Izzard when he was in LA and met him afterwards and then proceeded not to tell me this for over a month. He is useless. That is utterly uncalled for and I'd sulk if he wasn't all the way in Boston and wouldn't know that I was sulking. (For what is the point of sulking if the person you're sulking with isn't living with your sulky silence?!)

Finally, I have a dilemma:
Would it be in poor taste and/or demoralising to other people in the Onc. clinic and chemosuite to wear this t-shirt?

See, it makes me laugh - but I know I'm a bit warped so I thought I'd take advice.......
I mean, in my eyes it is *obviously* a joke but I figure some people might not see that - especially when sat in the chemosuite - nothing seems very funny in there. Apart from pictures of people having diarrhoea, apparently.....and I think that's still probably just me.

karma chemo

Well, Lorazepam has been my sleepy friend for a week now. I discover it's not as effective when I take it at the same time as my Gabapentin. I've been told to stop taking the Tamoxifen which makes me feel a bit scared. Even though the Tamoxifen, which was supposed to keep me 'safe', obviously hasn't done it's job - I still feel vaguely unsettled. Which is mad really because hey, I've got cancer in my bones and lung - OK, it could be worse - it could be a lot worse. But it's still pretty bad.
It's pretty bad.
I'm starting chemo again on Friday - tomorrow. Tablet form this time though - which is definitely good - because I'm fuming that I let them take my portocath out. Apparently if the tablets work then I can be on them 'long-term'. I'm hoping this is a good sign because I was too chicken to ask what sort of time frame I was looking at. But people were going on about 'living' and doing things and stuff so they don't expect this to eat me tomorrow. However, to date, I haven't been renowned for having my cancer in the 'expected way'.
I'm still doing lots of crying hysterically - I can't stop apologising to my partner and family. I feel so bad and so sorry for them. I don't want them to have to go through this; I don't want them to have to watch me fade away when the time comes. I feel like I am a burden - an emotional burden. They tell me to shut up and stop being so ridiculous (in a rather nicer way of course!) but,....I still feel it.
I also feel a bit embarassed that it's come back. I've been going round saying to people that everything seemed to be fine, so far, at this point. And now I just look really dumb.
Time to wail a bit more.

Oh, but thank you nice people, all. I'll get back to you properly in due course.

Did she fall or was she pushed?

So, I've been pushed. Given a deadline. The bomb goes off and I'm sent out into the world to fend for myself by December. No more talking. The time for introspection, for figuring out myself is running out.

This is supposed to focus the mind and set a goal to aim for.

So why have I cried hysterically over the last 18 hours? I'm amazed at how I am feeling. Like an abandoned child. Stupid for having forged a relationship that I knew was temporary. People leave - I know this; I'm used to being left behind. So why do it? I hurt now and if I'd kept to myself then I wouldn't. If you don't share yourself, if you don't give people access to your personal world then they can't hurt you.

But I do hurt.

Duly licenced (or will be)

Whew! Finally, some time back again. Preparing for my Holiday License has been *really* intensive. I'm knackered but the girls had a good weekend, everyone went home in one piece, nothing un-toward happened, none of them went under a tube train. The visit from my assesor on Saturday went fine; she signed off lots of things in my book and I was left with a few things for the rest of my team to sign off and my accounts to finish off; which is now done.
The girls went off exploring London in small groups on Saturday; I led a pretty good campfire on Saturday evening and then we did lots of the business-things on Sunday plus devising our own song for a party-piece whilst we're in Peru.
So, once my accounts have been verified I'll be qualified to take Senior Section girls away on Indoor Holidays :) There's some stuff that I would have liked to have done differently but that's often the way and I'm satisfied that I did a pretty good job. I *am* really relieved that there were no First Aid emergencies or other problems. I was more organised and together this weekend than I have been for a long time but it's left me feeling quite strange. I think I haven't quite worked out where I stand on the line between in charge and not in charge. I've spent a long time not being in charge of very much in my life, never mind, in other situations and then to move from that to being totally responsible for the planning and running and safety etc of 20 people for 2 days is quite a jump. And I didn't have a problem with doing it, I'm just finding it discombobulating to come back from it.
It's good that I've managed to do this - I don't feel as pleased as I'd like to; but I do *feel* a little more than I have done about anything (other than fear and sadness) for a long time. It's a real contrast, for example, to how I felt - or didn' t feel - last August when I was singing at the Proms.
So, there you go - that's where I've been for a while - waking up a bit.
And I feel so much better now that the light and sun is back. I guess (for today) I am coming back a bit. It's a bit scary how bad, how sad, how black I've felt this winter. I'm just a little bit scared of it getting that bad again.

Bodily landscapes

The weekend before my mastectomy I had a little personal event. I needed to mark and grieve and say goodbye to myself as I was - mark that I was going to lose my breast. I decided to do it as a piece of landscape-natural art. Once upon a time, when I still had great dreams and aspirations that I believed could happen, I was very interested in the work of a group of artists/performers called Welfare State International. They did a lot of work with communities, creating relevant art and events but they also did something they referred to as 'Rites of Passage' - creating personal ceremonies or events or moments to celebrate births, deaths, marriages etc. And their work could include the natural environment, it could be sculpture or poetry or anything. So I took these ideas to create my own, personally meaningful rite of passage.

I very carefully planned it out - it was to be a piece of 'sculpture' or rather, a 'piece' - using only natural materials, rearranged in their environment for my purposes but where they could be seen by other people. I thought hard about what I wanted to 'say' with my piece - it was important that it was all natural. I wanted to name or represent my sorrows; commemorate and appreciate the people supporting me and the qualities I drew from them to get through the difficult times; represent an onwards journey and commemorate or celebrate or salute the breast I was going to lose.

The design was a circle of long grass that was bent and flattened into a spiral, there was then a plaited garland of flowers intertwined with cones and berries and seed heads and pods, there were stones and rocks and at the centre a woven unturned basket made from twigs and covered with ivy with feathers interspersed.



The meaning?

The spiral of grass represented life - circular but also spiraling, ongoing and increasing - where I hoped to be going.

The garland was made from long stemmed flowers: rosebay willowherb and another yellow flower - one long stem for each of my grandparents, my parents and my brother. These are the influences in my life and my supporters. I felt that I had been given particular qualities from each of them that were helping me on my way.
Grandad: courage, patience, recovery
Grandma: courage, patience
Grampy: patience
Grammy: bravery, confidence, enthusiasm, the ability to gather people up
Mum: tenacity, determination,
Dad: steadfastness, determination
Brother: generosity
And of course, great love from them all. And all these qualities were represented by the cones and seeds and berries as they represented growth and living, the potential new life within them.

The stones were to represent the sorrows:
My sadness at having lost all but one of my grandparents, my sorrow at not knowing them better, missing them, the sadness I felt for the difficult things they had gone through in their lives, the sadness I felt for my brother's sadness, sorrow for the opportunities and dreams for life that I had let go, having cancer, great sadness at losing a part of myself and of being betrayed by my body and sorrow at having shut myself off from my family and friends.

Finally, at the centre - the woven basket, upturned represented my breast - the vines and leaves showed how it was a living, growing thing and the feathers, the softness of skin and flesh.


It took me two days to complete - the first I scouted round Hampstead Heath for a spot where I was going to create my piece and collected up some of the bits I needed, especially the parts for weaving the basket. The next day I made it. It rained on and off and I got quite wet - I also went bra-less with a low cut top - to flout all that was to come.

When it was complete I took photos and then very resolutely turned my back and left without turning back. I didn't go back to see what happened to it - in my head it is still there.