Where's autumn gone?

It's 5.30pm and pitchy black out, now that the clocks have changed for winter. It's at times like these that I wish I had a quilt under my desk so I could curl up and not have to get home in the dark. To be truthful - it's unseasonably warm, so it could be worse - although, of course, my perception of temperature is less than reliable....so maybe it's freezing really....
The leaves are clinging on to the trees for dear life but the wind today has made some of them start to fall. Quite a few are still spring-green though. I've been enjoying the cooler weather too - cooler nights and that nice cool when I step out of the door in the morning.
There were no conkers on the tree at the back of my flats this year - the heat of the summer meant that they didn't mature properly.
Do you know what a conker is?



The fruit of the horse chestnut tree - their prickly shells are in direct opposition to their shiny, smooth surfaces. And each year I collect a few and carry them in coat pockets because I love to feel the smoothness of them. When they first come down they're really shiny and smooth and as they dry out they crinkle and shrivel. But I don't have any this year.
I did have an acorn for a while, but it didn't last as well as a conker....
Even though it's rained quite a bit recently there isn't that damp, autumn feel. I wish I could capture that smell and feel to share it with you. The smell of woodland decay - leaves and barks and seeds gently settling for the winter, and yet - the result of that decay will be ready to feed the new growth in the spring. It's sad; I oddly miss cold winters and damp and dreary days - is the world dying? It's changing, that's for sure - in so many ways - I've changed, but it's changing too. I worry about what we're doing to the world - yet here I sit at my computer, consuming electricity and metals and plastics that will kill the world a little bit more. Will the world and I go down together? It's odd - I sit here and sometimes think that it would be better if we had never gone down this path of consumerism, of great technology - the search for new and bigger and better and how and why - that the simple life was better. But, of course, without all of that - or at least some of that - I would have died from cancer and wouldn't be here to think those thoughts.

Odd.

Up/down

So, I guess I'm feeling down again. When I force myself to have a 'good' day the result is a relapse into misery for longer than I felt vaguely cheerful.....
Blah - if I post this every day then you'll never stop by.
How about if I bribe you with the rest of the story of last year? No, that'll probably put you off even more!
Don't forget to say 'hello!'
I know if you did or not! ;)

Fear

In the summer I agreed to go as a leader on a trip to Peru - I was scared stiff by the idea but I thought that I needed to do something that scared me. Something daring, something to prove I could do things, to prove that cancer hadn't got the better of me.
Now I am starting to wish I hadn't agreed.
I am not getting less scared, I am getting more scared. I'm scared that something terrible will happen, that someone will get sick, that I'll get sick, that we'll all have travellers guts, that I'll screw it up and the consequences will be bad.
I am scared stiff and I just want to pull out.

I'm also scared that I've tempted fate - that cancer will rear its ugly head again because it knows that it'll screw up everything......

I'm scared: as ever
Because I'm scared of everything.

Say 'hello'

Won't you say 'hello'?
If you're the person visiting from BCC or Westminster, or indeed, anywhere - won't you say 'hello'?
I promise not to bite - I'm just interested to know who you are....

And if you've landed here because you've done a google search for 'portocath' - read on - in fact, I'll label those posts tomorrow so they're more easily found. I have a portocath, it's great, it wasn't trouble-free to start with but it made chemo a lot easier to stand. And you can say 'hello' if you'd like to; or just know that if you did, I'd be thinking of you.

Letting go?

Have I let go a little?
Have I let go of the surgery, of the chemotherapy - has the fact that they are over a year ago now meant that I can let go a little?
I am mourning so much - I feel totally screwed up. I'm working on it but as I delve deeper and deeper, I am more and more aware of how much work I have to do.....

National Blog Posting Month

Think I can do it?? Would you like me to do it? I am the Little Engine That Could. Or might. Or will you be saying 'shut up, shut up, shut up' within a few days! ;)

Raise money!

Oh, and crap, I forgot the most important thing and that is:

The Great South Run

Sarah was my partner in chemo-crime last year and she can run, and I? I can not. So she ran the Great South Run (10 miles) with 2 friends to raise money for Breakthrough Breast Cancer - you can still sponsor her - they're about £10 from their target of £1,500 (a bit under $3000).
Please help her to surpass her target and HELP PEOPLE WITH BREAST CANCER - because you know you want to!

Thank you ::begging complete::

TOO PINK

OK - this pink is seriously off-putting. I can't face writing because of all of it.....
It will change - soon. because I have the time to play with my blog...NOT.

God, I am just drowning at the moment.
My guide unit has dragged me through the mill and let me just say that I've spent far longer than I'd like in talking to girls parents about their behaviour and what is and is not acceptable. Scarier are the parents who encourage their daughters 'to stand up for themselves' - by shouting, swearing and physically threatening. AND I HATE IT! I hate trying to talk to people in situations like this and I hate what's going on because it involves bullying and that nasty snidey, sarky, snarky behaviour that girls can display. And it's hard to discipline that because they're not stupid enough to do it while I'm nearby. Who'd be 13 or 14 again? Not me, for sure!
Arrangements for Peru are doing my nut - we can't decide on accommodation, I can't arrange Travel Insurance until after the end of November so I can say that I'm a year out of treatment and it's just overwhelming - I'm increasingly thinking 'why am I doing this?' I keep reminding myself that it will be a fantastic experience and I'll enjoy it when I'm there but....
And I just spent a lovely weekend with a lovely friend who will have her first baby in about 3 weeks and I am so jealous and she's not even that excited or happy. So not fair.

Gah.

Breast Cancer Awareness Month

You may have noticed a slight change to your usual service.....
I know the pink is alarming and slightly sick-making but, rest assured, it's only temporary.
October is Breast Cancer Awareness Month and I've gone pink slightly in advance. It will only be pink for the duration - I promise!

You know the drill: know your breasts, check your breasts, throw embarrasment to the winds and show 'em off to your GP if you're worried, don't smoke, birth control pills are not your friend, eat healthily and bear in mind that the earlier you start your family and the longer you breastfeed, the better (less exposure to oestrogen during your lifetime). Not doing these things doesn't mean you'll get cancer - these are just a few known factors that *can* (not will) help to reduce your chances of getting breast cancer. But remember that 1 in 9 women will get breast cancer at some time. The brilliant news is that there is loads of money going into research and treatment of breast cancer and if it's spotted early enough then the survival rate is very good. Be proactive!
And above all: noone is too young for breast cancer. Cancer does not respect your lack of age; in fact, it doesn't respect a damn thing. If a doctor tries to fob you off with the 'you're too young to have BC' line then you tell them you know someone who had breast cancer when they were 27.

Here are some of the sources out there who I've had help from over the last 18 months:
Breast Cancer Care




London Haven
Cancer Bacup
Lavender Trust

Lots of them have lovely things on sale or links to items being sold to raise money for research and care of people with breast cancer. So, if you fancy lavender wellies or pink gardening gloves or any number of other things, you can help them to support people like me.

What I did last night, or torture extraordinaire

So, (I start all my posts with 'so' - it's so you all feel like we're just picking up a conversation where we last left off...) So, Sarah dragged me off to 'Body Conditioning' at Kentish Town Sports Centre last night. I rang her after seeing Elaine, hoping for a cup of tea and a chat only to be told that she was on the Heath walking Wooster but did I want to come to the gym with her later. I said 'yes' - god knows why - I don't do 'classes' - I hate being hot and sweaty and I have no stamina. But I went - and I survived. I got really hot, my hand swelled up (lymph fluid: drain! Drain, I say!) and I re-aggravated the ankle that I turned last week - it's strapped up now and I can walk on it - it's just a bit uncomfortable. 'Body Conditioning' is aerobics to start with and then exercises with weights afterwards - I didn't use weights: I can't remember what the weight I'm not supposed to go over is. (If you see what I mean) It was hilarious but no one laughed out loud at me - I'm not terribly coordinated and trying 'grapevine' and the turn and then 'kickback' or whatever those terms are; well, I was lost and was waving my arms up and down in the opposite direction to everyone else and going the wrong way and it was all quite sad. I'm not convinced that I want to go again. Sarah keeps telling me that it'll get easier. I don't mind the aerobics bit (much) but I am very wary of putting my weight on my hands - like in press-up stance and I was scared when my hand started feeling so swollen. It went back down again - apart from the baby finger knuckle that's always puffy now. I'll keep thinking about it.

In the meantime, in order to try and solve the utter disorganisation and being unable to remember things anymore I have bought a filofax. No laughing and no poncy-jokes, please. I just can't cope - I need to-do lists and a diary section with the hours marked in it and somewhere to scribble shopping lists and guide programmes and Peru details. And I was doing that with bits of paper and it was a disaster - I just had scraps of paper all over the place. So, in my eyes, a filofax is just a grand collection of scraps of paper. So there.
It looks like this:

Except, it actually looks more like this:
Yay!! Bright red! For easy finding in bag, for easy noticing when I'm about to accidentally leave it at work/home and for just being generally sexy. If a filofax can ever be such a thing. And it has lovely different colored sets of paper for writing notes, so I can have different colors for notes on different topics!! And it has Day Planner and To Do pages! I'm entirely too excited about a filofax, aren't I? Yes, it's true - but I have high hopes for actually being able to stay on top of things now.....

(Argh! Font has gone all ballooey (I've never written that word before - it looks wrong) and won't let me fix it. ::hate::)

October is a very important month....

Sad, tired, not a total screwball

OK - I may have been sounding a *tad* dramatic over the past few weeks. Well, alright, yes I have been.

Please be assured that it all comes and goes and that I'm not spending my life curled up in a ball weeping. I am jolly confused and muddled and astounded by where my sense of self is taking me at the moment. However, in my calmer moments I do believe that it is all taking me somewhere new; that it will resolve - that I'll come out the other side.

I just haven't yet.

I am like a child learning how to communicate; except here I'm relearning how to communicate emotionally. I think I've been 'shut down' for a very long time. I froze myself rather than expressing things - because some part of me thinks that having feelings is a failing and because they were just too overwhelming. There were too many things, one after the other or all on top of each other and they would have drowned me on my own. So I stamped them down, shut them up, told myself to be strong and get on with things because feeling something about all these things was not going to make them go away or resolve themselves. I have learnt/am learning that feelings cannot be right or wrong: they just are; that you are allowed to feel and wish for things that cannot be. I am astounded by some of the things I'm learning about myself because I find myself thinking things that are simply not true. To put it metaphorically (and why not!) I've been trying to steer my ship according to a false map and false landmarks to the wrong destination. It's time to get myself back on a course - a better course - because, of course, there are many. (and possibly too many uses of the word 'course' in the previous sentence...)
I'm starting to have hopes for the future. I won't say I see or know what it will be; but things are starting to float into the offing - I see ghosts of the future.

Gentle ghosts presenting opportunities.

Move on

OK – I’m close to cracking-up. I haven’t slept without waking every 2 hours for 3 nights now. Yes, the vicious ‘hots’ are back. If this carries on then I’m not to be held accountable for snapping, biting your head and arms off and then bursting into tears.

It took every ounce of my strength and will to get through last week. To get up in the morning, to get through the routine, to get through those hours at my desk and then to go home and feed myself properly and start it all over again. I’m miserable. I go through periods of time where I think I’ve moved on; that the memories have receded a little and then they come back and hit me again. How many years will it take? I thought: one year – then perhaps it’ll seem better but now I’m thinking that perhaps *next* year it will be better and underneath, a part of me if thinking that perhaps it’ll never be better. Perhaps I will always be sad. Perhaps I will always be grasping at life trying to hang on. Trying to keep up. Trying to be on top of things instead of running around after them.

And then I’m scared and hate myself for finding this so hard – this cannot be as terrible as everything I went through last year! That took real tooth-gritting will-power. I feel like it’s taken me away – the cancer may be gone but it’s still eaten me up in the process of banishing it. It’s taken so much to get through it that, actually, what’s left of me isn’t worth having.

Stop me if you've heard it all before.....

Scarsville

Happy Birthday to my mastectomy scar!!

A year ago today my cancer was removed and with it, my cleavage. Hey, who wants one of those anyway? Other than the entire damn western world, that is. Today I find myself mesmerised by other women's cleavages - and they're everywhere! The fashions, they are low cut; the bras, they are on display and me - I find myself staring at other women's boobs, and that's pretty weird.

I never used to think much about them before: they were there and if I had the right top on and stood at the right place at the bar in the pub then I might get served before the blokes. And I liked to wear my fitted tops and I loved my lacy, beautifully colored, low-cut bras. No matter what I was wearing on top it made me feel good to be wearing something sexy underneath - even if only I knew it.

I have had some very nice, very kind comments recently so I wanted to say a more 'public' thank you. 'Thank you, ladies'. I have to admit, I'm not feeling very beautiful or even very happy with myself anymore. I never thought this would happen to me. No-one ever does, I expect. I just feel sad now - just sad; in a dull, heavy, weighted-down kind of way and nothing much seems good - it doesn't seem *bad* either - just...flat. Like nothing much, like I've gone numb along with my scar. It's my "little souvenir of a terrible year".

I have occasionally stamped my foot and said 'it's not fair' - but I guess I don't feel I'm allowed to complain. It doesn't change anything - it doesn't make it go away but maybe I should; maybe those 'dragons' need to be named and released. Maybe I'm allowed to whine a little bit and say 'it's not fair'. Well, you know what: IT'S NOT FAIR! WHAT DID I EVER DO WRONG? I'VE ALWAYS BEEN THE 'GOOD ONE' - too afraid to be anything else and look where it's got me....I'm boxed up by my fear and constrained but it didn't save me from breast cancer. It didn't save me.

Allowing mutilation

A year ago today I signed a piece of paper giving my consent for my right breast to be removed. I had tears pouring down my face and as I went to sign I shouted/screamed/vocalised; I couldn't sign it without that. Somewhere I have a copy of that piece of paper and one day I will look at the signature: I bet it doesn't look anything like my signature because I don't think that was me.

I think the signing of that paper was the worst part - almost worse than waking up after the mastectomy. Apparently as I woke up from the anaesthetic, I was crying. Utterly unconsciously. But still tears were coming. I don't really remember. But having to say 'yes, I allow this' - it was awful, because I didn't want them to mutilate me. But I did and they did.

After I signed the consent form they let me go home as long as I promised to come back by 7.30 the following morning. I made David take some pictures of me - you know - with both breasts. I haven't looked at them since. Maybe I will one day.

Radio trauma-rama

Class night.

I woke up at 4.30 with 'the hots'. Whilst fumbling for my chillow and waving pillows around I managed to knock over a half-full pint glass of water (Water! People! Water! I don't do the booze!). And I knocked it all over a) my pillows and my side of the bed, b) thd radio alarm clock and c) the bedside table and 'the gap' - you know, that space *between* the bed and the bedside table that is a useful cache for those things that won't fit *on* the bedside table. Mine was the repository for those big clear plastic bags full of anti-sickness medications, steroids and painkillers that I used to come away from the chemosuite, post-chemo, with.

["Hi! I'm Emily, I have cancer and I rattle when I walk!" Last year was *great* - NOT]

So currently, 'the gap' has my useful A4 notebook for planning and writing, an Asterix book (of course!), a box of 100 soluble paracetamol (they didn't have any smaller boxes in Morrisons pharmacy and it's a stupid size!)

So, I spent a happy, groggy 20 minutes with a towel drying off those things plus the stuff on the *top* of the bedside table (too. much. stuff.) including the clock which was rather damp too. Went back to sleep eventually.

Woke up - later than the alarm time - radio is making strange hissing sound. Whoops.
I play with the volume control - louder hissing. I tip it up - AHHA - if I stand it on its side then it plays!! (Of course!) So I leave it on and have a bath and get ready - now I'm ready to leave - it won't turn off!! Classy! No matter which way I tip it. So I've had to leave it singing and talking away to itself - BBC Radio 2 all day.

Class night.

The tales, they do get better....

World's worst

World's worst Zoladex injection this morning. The nurse's hand slipped as she was sticking it in my abdomen and it came out and she had to reinsert it and OW! That flippin' hurt! I think that one's going to be an almighty bruise. I knew it wasn't going to be good when she had to fetch Ivy (Queen of the Chemosuite) to show her how this particular Zoladex injectable worked. Doesn't fill you with confidence, does it?
Plus it took her a really good feel-around to be confident enough to insert the needle to flush my portocath and that's always 'uncomfortable' i.e. it hurts. So a less than good day in the chemosuite - and considering I had to wait over an hour, even when I was there first thing, annoying. I guess I have a hard time accepting that I'm not the priority any more. Which is a good thing. Because being a priority means being really sick and I'm not anymore. So I was cheerful and accommodating and patient but there's a little bit of me that still wants to be looked after - to be the patient not just patient. But not really.
(Please don't send my cancer back just because I admitted that!!!)

T'was surgeon check-up on Tuesday too. All was well there. Well, all except some damn swelling in my hand which he didn't say was lymphoedema but I assume it actually is. It's tiny - you can barely see it but unfortunately I can feel it - my hand is stiff and I have pain down my arm. The surgeons response to this was 'yes, it can happen' - ARGH!!! TYPICAL SURGEON RESPONSE!!!! Pain and discomfort just doesn't register. I'm sitting there thinking 'please tell me what I can do to help make it better', surgeon's head is thinking 'it's only pain, it doesn't matter'. Well, it matters to me! I want my damn arm and hand back! I do not want lymphoedema as a daily reminder of all I've been through.

I'd also really like my knees and ankles not to seize up - sometimes I stand up and I can barely walk because I've stiffened up so much. I'm like a granny and I'm only 29 - this must cease!!

ALSO - the insane sweating has come back. I thought the gabapentin was working but the flushes are getting eviler again - my arms, they sweat!! Whose *arms* sweat?!? I mean, absolutely *dripping* and *running* with sweat. So much so that when I put my arm down on a piece of paper the other day, when I lifted it off again (I was writing) the paper was sodden - wet through and sticking to the desk. I am disgusting and I loathe it. I woke up 3 times last night and at 3 in the morning I had to go downstairs and outside where I lay on the concrete paving slabs outside the back door because they were cool and I just couldn't cool down....
Horridness

'Nuff complaining?? Perhaps so.

::Whaaa::
::Whinge::

Get over it girl - in fact, go and wash off the day's layer of sweat and go to bed to aquire some more.
Deep joy.

Life or death - for plants

Having let rather a collection of plants die of dehydration and green-fly munching on me over the last year or so I was desperate to manage to keep a few alive.

I think it was as a sort of celebration or affirmation of the fact I'm alive (yeah, alright, dramatic - shut up) But still, I wanted to prove a point - to enter the world of people who kept things alive.

However I recognised that my past track-record didn't paint a good picture so I didn't aim too high; I tried to be clever by picking drought-loving herbs: sage, lavender, thyme and then I cunningly put those crystal things that absorb water in the pots when I planted them.


Here are the results:


So, we have (from top to bottom) : one not-happy-but-not-dead-yet thyme, one dead sage and one mostly-dead lemon thyme, one flopping and sad-looking lavender and one caterpiller-munched sage.

I suppose I could say that more of them are alive than are dead but they don't look like the lush, green, happy plants they were when I bought them. Plants, why don't you like me?? (Because I don't water you enough - OK, shut up now plants)

Radiotherapy

Sometimes as I lay on the radiotherapy 'bed' I used to cry. I was laying there, naked to the waist, with my arms above my head, carefully positioned using laser lights lined up with the tatoos they gave me, and I wasn't allowed to move. Everyone else had to leave the room - they had amazing mental arithmetic skills - and they'd all rush out. It's odd to be experiencing something that everyone else can't because it would harm their health. Strange, yes?

And so I would lie there - listening to the music. Because they always had CDs playing - which was so nice. But I fear I will never be able to listen to the Coldplay X&Y album without being transported back to that place; the same goes for some REM songs. And so, I would lie there, tears rolling down my face and into my ears because I couldn't move to wipe them. And I couldn't make a sound and I couldn't *cry* cry, because I couldn't move my body - not to shudder, not to shiver, not to weep.

And sometimes I would be shuddering because it was so cold in there. The machines like it cold and so I would be absolutely shaking with the cold and wishing desperately for a hot flush. I don't know how the radiographers stood it - their hands would be freezing cold as they touched me - moving me around, manipulating me into the right position. They were all, without exception, lovely to me. Another collection of lovely New Zealanders - male and female - plus some others. The names have faded but the faces stay in my memory.

So, sometimes I listen to the music that takes me back there - I don't know why. I like to torture myself and live in the past I suppose.

Cancer and money

I am so incredibly lucky.

I am lucky that I live in the UK and that my National Insurance contributions mean that I don't have to pay anything for medical treatment, bar £6.50/$12 per prescription.

When I was diagnosed with cancer last year - no one was asking me how I was going to pay for:

• 8 chemotherapy treatments and medication,
  
• for a portocath insertion,
  
• for emergency care when I got neutropaenia,
  
• for a daily District Nurse to visit to do my injections,
  
• for surgery,
  
• for 25 radiotherapy treatments + planning and
  
• more consultations that I can remember.

While I flailed around in confusion and fear - no one was asking me for my insurance details, demanding my credit card.

They simply treated me.

I never had to make decisions about whether I could afford the treatment I needed. I didn't have to put a price on my health - on my survival. I didn't have to delay treatment because I didn't have the cash. My doctors simply decided on the best treatment plan for me and

we did it.

And it's not that I have had all of this for free: I haven't - I've paid my National Insurance contributions for 6 years and I will continue to do so for the rest of my working life. And how much better than insurance is the UK system?? Fantastically better. Because the NI that I pay goes to the Health Service whether I am sick or not. The money I pay today doesn't treat me - it treats others and when I am sick then the money of others pays for me. It's a giant care package.

I am also incredibly lucky that when I was diagnosed with cancer I had a job - a good job with a good contract that gave me 5 months sick leave on full pay plus 5 months on half-pay. I worked while I was being treated so I never got into the half-pay scenario. But I am so grateful that I had a contract that protected me from discrimination, from being made redundant or losing pay - even my pension payments continued to be made.

Today I have read tiny excerpts from 2 blogs belonging to women in the United States - one is 20, the other 25.

• One has been diagnosed with breast cancer and is bankrupting herself trying to pay for her treatment.
  
• The other may have have breast cancer but her insurance company will not pay for her to see a surgeon to have it diagnosed because she is 'too young to have breast cancer'. She is going to have to pay herself to have the lump removed and hope that the diagnosis is good.

I am so lucky.

I wish I could give the treatment experience I had to these women who are even younger than I.

It is awful to have breast cancer.
It is awful to have breast cancer when you are only 20-odd.
It is truly awful to have it and not be able to be treated in the best possible way.

I had cancer and it was awful but at least I (and my family) could say that I was being treated by a fantastic consultant who was world-known in her field; that I was having all the treaments that were recommended, when they were recommended; that I was in an excellent teaching hospital. I didn't have to play a balancing act between staying alive and not being destitute.

I've never thought the US system was a good one: it didn't serve my grammy and grampy well but now I cannot believe that it's humanely right. To put people in these sorts of dilemmas. To have to die as a result of cancer because you couldn't afford the treatment at the right time.

I am appalled.
My thoughts are with people all over the world who cannot have what I have had.

And by-the-by: 'Thank you' National Health Service for the fantastic treatment, the fantastic people and for the timely manner in which I was seen. This is why I would never leave the UK.