Scrambled eggs

Cancer - in cackling tones: "We're in your skull, trying to reach your bra-a-ins! Hahahaha!"

Is what an MRI of my head shows. Which explains the numb patches on my face and in my mouth. Apparently it's squeezing in between the layers of the skull and trapping nerves.
Soooooo, chemo is on hold while we do 5 or 10 doses of radiotherapy to try and fry it on the spot. I keep to meet the clinical oncologist (not the Princess Oncologist - she's a*medical* oncologist) on Tues to discuss and then have planning session ready for the new attack.
People are being positive - I have no perspective so am utterly lost and just being gently nudged around from pillar to post.

We finally had agreement that Fentanyl wasn't for me and am now on Morphine sulphate -
must improved although current dosage doesn't actually seem to be doing much actual pain *killing*. I would argue that if you're spending the day lying down or sitting down in very particular positions so you're comfortable and then are not able to walk around or stand comfortably, then there's still some fiddling with the dosage to do. Comes with it's own set of sfx of course: dry mouth (as in, I don't seem to be able to speak as my entire throat is stuck to itself. sorry.) Constipation on grandiose scale - there are a lot of laxatives out there and I think I'm taking all of them, together, and they're not working too well yet. I do keep pointing out that I haven't *had* food for 48 hours and this might have something of an effect but am being roundly ignored. Seems sensible to me - put nothin in, get nothin out - right?


OH - and in the respite between starting Morphine and the grand sickness that is something to do with my head; I managed to walk into an actual hairdressers and say, "I need my hair cut, I need it cutting short and I need it cutting now. Any chance?" Fortunately the answer was yes and it is Short.(sorry, crappy webcam picture.)








Don't worry - I looked much paler until they put 2 units of blood into me on Friday. Takes bloody forever (hohohoho!) Not sure I feel much better other than behaving like more of a bitch than is really my due. Sorry.

So, it's not everything - but I thought all you lovely people deserved to be kept up to date. Thank you for all your love, messages, thoughts, prayers. It's all appreciated. Ta. :) My mum arrives from the States tomorrow - thank heavens. At least she knows better than to even mention baked beans to a person who has been throwing up for 2 days and is just possibly beginning to think food might be an option......Foolish move, Dear Other, foolish move. As a general tip to the rest of the Universe - Don't Do This. Thank you.

Deed done

Hair is straight. Hair is flat. Hair was attacked by straightening, things - whadjacallems.

It's still below my shoulders - so not *that* much was cut off it.
It has layers - I didn't think I'd have layers, coz, you know - fluffy hair and layers means *pouff*.

But actually, I think there will still be some curls when it *hasn't* been attacked by straightening things - and I won't be doing that because I'm lazy. I mean, I won't be doing that because that would cause the lymphoedema in my arm to flare up, I'm sure.....

I cried while it was cut; I cried after it was cut but mostly underneath the mane of hair whilst it was being cut; so it mostly didn't show.

I kept a few curls - you know - because. I needed to. I'm not sure why.

I cried because I looked a bit like I *used* to look - all that time ago. Apparently the curl will probably continue to grow out and it will go back to how it used to be. I'm sad about that.
But, as the hair came off I kept telling myself it was just change. Just more change. In a life that is full of change. With a person who hates and panics about change.
::sigh::
It's all about how we see ourselves in our mind's eye. And my mind's eye is confused. It sees the person I *was* - maybe it's a patchwork of many of the persons I have been.....and am. All I know is that I am surprised when I see myself in a mirror. That she is not who I am expecting.

Anyway, tis done. And I'm told it looks pretty good (but not so much in my webcam picture):
EDIT EDIT EDIT EDIT
You're in luck: Sweet Camden Lass has a *much* better picture from yesterday. De voila!

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....

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.

Blood and hair

So, the vein that had hardened up has now gone thready and the one that was still working has hardened up now......there's one left on the inside of my elbow and then we're into the deeper ones in my forearm. Ick, is all I have to say. Ick, ick, ick. I don't think I'm going to be real happy about digging for the deeper ones. I don't want to be a wimp, but I hate them looking for veins anyway.

I had the stitches from where they removed the mole taken out today - and I survived that, but then it started weeping and I have a nasty feeling that part of it has reopened.....I had wondered if I'd be healing slower because of the chemo and I think I may have been right. It's nothing major, but I suspect this'll be another awesome scar, because I always seem to scar like billy-o (fascinating word, how is it spelt?)

Clinic day tomorrow and I'm foreseeing a real drag of a day. I have cut it down a bit by going to have the bloods taken this afternoon; but they've shoehorned me into a clinic that was already over-booked and I'm not due until after 11am - lots of time for getting behindhand. Yak. The waiting really does just eat away at me - very bad for the nerves.

I had a fascinating conversation with a shiatsu practitioner the other day. I was talking to her about the whole range of things I've felt over the last 3 years (shit, nearly 3 years! I only just realised - no wonder I'm feeling antsy.) Anywho, one of the things I mentioned was the feeling of being broken - linking in with the feeling that my body is me; plus how trapped and difficult I found it trying to fit in with people in the rest of the world. She said to me that perhaps I had been broken *open* - no more hiding away from the world, more communication. It's an interesting take on it all. I'm thinking about it.

I was asked about my hair in a comment the other day. It has grown back, in abundance - it's down to my shoulders now and would be longer if it wasn't so madly curly. I'm still quite ambivalent about it. I think I should have kept to what I'd said about shaving it all off every year to teach myself not to get so attached to it. I'd probably be a darn sight cooler if I had it cut at least but I'm oddly proprietary of the curls and I'd be sad if I had it cut off and they all went away. So terribly contrary. My hair grew back quite quickly I think - my hair has always grown quite fast and has been quite thick and it still is, well, hmmm, it's sort of fine but there's a lot of it. It's also really babyishly soft still. I don't think my friend's grew back so quickly. So, there you go. I'm hairy. I quite wish all the other hair hadn't grown back though!

How I've changed

This picture was taken the day after my birthday last year. Two weeks after I had been told I had cancer and 3 days after my first chemotherapy treatment. In that time I had cried, been sick, barely eaten, had my hair cut (it was down past my shoulders before).
I look at this photo and I see the tiredness in my eyes; the 'deadness' - it's like I'm not there. And although, at this time, things were tough - I had no inkling of just how tough they were going to become. Or, indeed, how much sicker I was going to look by the end. I don't have many photos of me once my hair came out and I started to look really ill - really like a person with cancer. By that point none of us really felt like taking pictures - we didn't want to remember that time; we didn't want to be in that time.
Today as I type this - I am sitting in exactly the same place in my flat, with the same blanket over my knees. What's changed? A lot, a little, nothing? All of the above? Probably.
Some things have gotten better, some have become worse.
I loved this haircut and I wanted it back - but now of course my hair is different again. I can't keep up!

Hair, Boston Pops, Limos!

Final photo - this is me at the Boston Pops - also last Christmas. Shitty photo, taken by camera phone. But look! Look at the hair!! Not curling! Too short to curl. I look tres attractive, yes? Or not - one or the other.

We were sitting right by the stage - see podium behind us. This was a present from my *fantastic* brother (who always does brilliant presents) and included getting there and back in a Limo. My first time in a Limo. He's so cool. I wish I were him.

What a to-do since I last posted....
I have since then:
- had an MRI
- been to Leeds and back

On Tuesday the appointment letter for the MRI arrived and they'd neatly ignored my request for the 7th or 8th of September and made it for August when I'm away. So I telephoned to say 'no can do' and the eventual upshot was having to rush in to have it done on Tuesday afternoon. David literally had time to drive down from Northampton to go with me (thankfully). I mean, I could have managed on my own, but I'd really rather not.
So we went and had it done - uneventful except for rather profuse bleeding after the nurse removed the cannula. I think I've probably got slightly low platelet count at the moment so it took a little longer then normal to clot. So I looked quite gory for a few minutes!! ::hee hee::
At least it's done and dusted and I don't have to think about it while I'm away. When I get back I'll just have to have the portocath flushed and then the silly pre-admission thang just before surgery.
So, Thursday we set out for Leeds from Northampton. On time. Unfortunately once we'd stopped at David's parents and at Sainsburys we were no longer on time and I had to call Vis and say not to wait for us for lunch. We got there at 2.30ish (I think). It's a nice house they have and you can see the airport from their front windows but fortunately they're not under the flight path so it's not too noisy.
Lovely meal in Horsforth at the Town Street Tavern - I had some delish duck, Greek salad and creme brulee (how the *%^& do you spell that?)
Picnic in Golden Acre the next day and I finally met Zoe - she's nearly a year old and has a lot more hair than me!!! :) But she's such a smiley, good natured sweetheart - I can see why her mama loves her to bits. Anyway, we had one incident of vomiting but that was it.... (that was her vomiting, not me - for a change!)
After the park we did a quick jaunt up to Otley Chevin - lovely, green and cool. I picked a sprig of heather to take home with me (for luck, or something).
Quiet night in, watched 'Hero' - I enjoyed it, David thought it was slow.
Last day in Leeds: took Vis for lunch and then stopped at m'dad's - grabbed some stuff to take home: mostly books (of course!) then drove back to Nptn.
Nice weekend - nice to see everyone. Cat, of course, showed me her scar- I hope mine heals as well. I don't usually scar badly so I hope it won't be too obvious (except in the really obvious, only one breast sort of way). Aber and other bits of Wales next: can't wait. Have to try and find a B&B in Aber first though: the folk we were going to stay with can't put us up after all.