Dee's Blog Bit

I shaved my head last night.

The long, red hair that I loved, has gone.  I often wonder if I'll be around long enough to grow it back to the length it was.  Who knows.

I'm feeling very detached at the minute.  Like I'm an onlooker to this bizarre pantomime of my life.  I can be talking about the cancer to people, and almost forget I'm talking about myself.  Then I suddenly realise that it is me.  It is my life.  And it hits me like a brick.

In the past couple of days, I've been to see the folks at work, and wandered around town with a friend.  All the time feeling like I wasn't really there.  It's just been a blur of days.

I forget that other people don't know what this feels like.  I forget that they can't understand how I feel, and why I feel like I do.  I forget that just a few months ago, I was completely ignorant to how this would have felt too.  I shouldn't expect people to understand any of this, just like I wouldn't have understood, before it happened to me.  I get frustrated when people blatantly don't have a clue what my life's like now.  But I shouldn't feel that way.  I just forget that they don't know what it's like.

Dillon kitten woke me up this morning.  Not in what has become his usual way of chewing on fingers, but by snuggling into my neck and being all cute and purry.  He was so warm and alive.  It's little things like that, that remind me I am alive.. this is real life.. not the bad dream I keep hoping I'll wake up from.  I think I'm either permanently stuck in this particular bad dream, or it is indeed real life, and I've got no hope of waking up and leaving it behind in my dream world.

My head feels weird.  It's almost like having someone elses head.  It feels cold, but warm, and strangely heavy.  Surely it should feel lighter, with no hair on?

Sitting with a mug of coffee, looking through my window, at an earlier Thursday morning, than I've seen for a while.  I don't often drink coffee, but just fancied it this morning.  I'm sure it'll go well with yesterdays steroids, to keep my hyped up for a while!

I've been having real trouble waking up lately, and don't see much of the 'am' side of lunchtime.  I finally managed to get to sleep at about 4am, and was woken by Dillon kitten at 7, for his breakfast.  I was awake then, so thought I may aswell stay up, and sleep later, when I'm tired.

My room looks out onto the back garden.  I can hear the birds singing and have just seen the cheeky resident squirrel saunter across the garden.  You can have a conversation with that squirrel.. If you sit outside with him and make noises, he'll talk back!

It looks like the sun's trying to come out, but it's a bit cloudy at the minute.  Clouds are moving quite fast thought, so maybe the sun'll peep through in a while.

Today was round two of chemo (I'm having FEC chemo, so I'm now officially a Fec(k)er.  Though it could be argued that I have been for quite some time!).

The waiting around the hospital wasn't too bad today.  Only 45 minutes, as opposed to last times 3 hours.  It went by uneventfully again (thankfully).  I haven't been sick yet, so I'm hoping that'll follow the same pattern as last time too, and I wont be sick at all.  I'll take the anti-sickness tablets tonight and tomorrow, and hope for the best.

Whilst sitting in the lovely, antiseptic scented chemo suite, I got chatting to a lady who was on the same ward as me, for her surgery, at the same time I was in.  She's shaved her head, because her hair started coming out in big clumps, ten days after her first chemo treatment.  She was wearing her daughters pink playboy beanie hat, but whipped it off to show me her bald head, and she looked really good!

She was talking to me and a chap who was in there, having his treatment, when she got quite emotional about it (quite understandably), which started me off.  My eyes were full of tears, bursting to get out, but I managed to stop them teaming down my face.  The other chap we were talking to, must've been about the same age as my dad (55/60-ish), and had been diagnosed with cancer (bowel cancer, I think, going on the drugs they were giving him) in January 2004, and given two years to live.  He said it was just a matter of coming to terms with it, and that he'd got on with his life.

I didn't see Lorna today.  I know she was supposed to be having her second chemo today too.  maybe she was there earlier than me.  Must email her to see if it went ok.

This thought's been freaking me out a bit, over the past few days..  I now personally know 4 people who're being treated for breast cancer (including myself.  Not including all the people I've just said 'hello' to, in passing).  Statistics suggest that 50% of people will eventually die from their breast cancer.  Obviously some are more at risk from recurrence/spread than others, but on average, it's around 50%.  So, statistically, 2 out of the 4 people I've had conversations with, will die of this.  I could easily be one of them.  That's a sobering thought. 

To be told you have cancer is am earth-shattering experience.  It makes you feel like your world's falling apart in front of your eyes.  The first thing I thought was "Shit.  I'm 29 and I'm going to die".  But to be told you have cancer and that's it.. you're definitely going to die from this cancer, sooner rather than later.  I can only imagine what that must feel like, and hope to god I never actually get to find out what it feels like.

I've found that when I'm sitting in the waiting room, or in the chemo suite, I get looks of sympathy from older people.  It's as though they think you're far too young to have something so awful.  Damn right I'm too young, but then isn't everyone too young to have something like this?  But as it's proven, cancer doesn't discriminate.  It's there for anyone.  Come and get your cancer.. free today!

I think I'm all 'roided up now, form the steroids they gave me with chemo.  They give me steroids to take at home too, which is supposed to help the anti-sickess tablets work, but I refused to take them last time, so I'm sure as damnit not taking them this time.

I've just looked to my left, to see the parchment that Sam gave me, just before I finished work to have surgery, that says.. "Dionne. Woman of Strength.  Know you are strong.  Know you are beautiful.  Know you are loved.  Know you are being sent healing constantly from all around the world.  All our love, Sam and Paul".  I don't know if she realised how much that would inspire me.  I've got it where I see it every day, and I read it every day.  When Sam first gave it me, I couldn't read it without crying, and I certainly couldn't read it out loud to anyone else, without crying.  Now it's sitting there, with the crystals, shells, feather, Chalice Well water and aromatherapy oil she gave me, along with the opalite angel Barry and Nina sent me, and a small braid of my hair that I plaited and cut off last week.

I have a hand-bound leather book sitting on my shelf.  It has heather stems running up the spine, which were taken from one of my favourite places, and it's begging to be used as a journal.  I'd hate to leave my life without putting that book to some use.  I just need the patience to sit and write in it.  I can get my words out much faster when I type them, than when I write them properly.

On that note, I'm going to go sniff my book, and remind myself of happier (and sad) times..

I saw the oncologist today, who informed me I'm normal.  I certainly don't feel normal.  In fact, I feel as far from normal as I think possible!

What he actually meant, was that the bone, lung and liver (which, incidentally, also covered kidneys, gallbladder, spleen and pancreas) scans that I'd had a few weeks ago, looked 'normal'.  there was apparently something on my bone scan (which the oncologist seemed to bypass and not be worried about).. a "very low grade uptake (of the radioctive sunbstance they injected into me) is demonstrated the left 5th costochondral junction which would be consistent with costo-chondrosis (costochondritis?) rather than representing a metastatic deposit."  So good news.. I hope.  I can cope with a few stabbing pains in my chest, as long as it isn't cancer, or anything else deadly.

I'm well aware that this doesn't mean it wont come back, or spread further on down the line, but it seems to be absent for now.

My blood counts were 'normal' too, which I was quite surprised at, considering I had a mild bout of tonsilitis until a day or two ago.  Glad I didn't bother going to the hospital for antibiotics now (I've always hated the damn things).

So I'm just about as normal as it's got, over the past few months.  Normal and shattered.  I'm absolutely shattered.

I've got my second FEC chemo tomorrow, which is always something to look forward to.  Last times wasn't bad at all though, so I'm hoping number two will follow suit.

I've taken to wearing a hat when I'm out anywhere now, and a 'buff' when I'm at home.  I don't have much hair left.  It's really quite drafty around the old bonce when I'm outside.  And when I'm inside, the buff stops it shedding all over the house.

I suppose I should feel all jovial that the scans were 'clear' (I'm being very careful not to use the word 'clear', when telling people about the scan results.  They might think I mean I've got the 'all clear', which sadly, I know I can never really get.  And god forbid they'd think I was 'over it'!), but there's that little niggle about this costochondritis.  Is that really what it is, or is it early signs of bone mets?  God, I hope not.  But at least the other scans were ok, so I shouldn't be popping off anywhere in the next few months, at least!

Right, I'm tired and Hollyoaks is on, so I'm going to toddle off for now.  But before I go, I must mention that I've just ordered a dress I've been drooling over for years.  I decided it'd be perfect for Hallowe'en, and probably Yule too.. and any other excuse I can find to be stereotypically witchy!

This is 'the dress', but mine will have wine coloured panels, instead of purple.. I think it's just lurvely  :o)

I wore one of my hats for the first time today.

I've never been a hat-wearing person, but due to the rapid rate at which my hair's doing a runner, I went out today fully hatted up.  I wore one I got from an American website (headcovers.com), that covers all my hairline.. so the hair I have left, was tucked up into the hat.  The main reason I wore it, was to stop my hair shedding all over my car, but I went into Asda and the petrol station with my hat still on.  I'm really proud of myself.  I thought I'd feel a bit of a twit, but I didn't really, and no-one gave me odd looks.

I bought a couple of things from Asda's 'Tickled' Pink' clothing range.  I know some people are really put out by this light-hearted approach to raising money for breast cancer, but at the end of the day, it is raising alot money (even if Asda are getting good publicity from it), so I'm happy to give a bit of support.

My hat and I are off to mad Lisa's later, to catch up on gossip!

It's been a funny old day.

I was woken up early, by Dillon kitten purring around my forehead, who'd decided breakfast time was 6:19am today.  Fed Dillon and went back to bed for a couple of hours.  I still got up earlier than usual (usual's been around lunchtime lately.  I seem to need to sleep alot more than I did before chemo), because I was meeting a friend for lunch, so thought it would be a good idea to wash my hair.

The hair decided it was leaving home a bit more quickly today.. it came out in handfulls.  Took me half an hour to get the comb through it afterwards.. and another couple of handfulls departed.  I'm sure no-one except me can tell there's huge amounts of hair missing.  I don't have any bald patches yet, but I can tell there's much less there, than there was yesterday.  I'm thinking, at this rate, it'll probably all be gone by the end of the weekend, if I don't beat it to it with the clippers.

On my way into town, to meet the afore-mentioned friend, I felt strangely detached.  I didn't feel well yesterday, and wasn't to great today, so I don't know if it was the poorlyness, or the fact that baldness is staring me in the face, that was making me feel out of it. 

Apparently getting bored of cancer, I thought I'd go for a bit of tonsilitis instead!

I went through the afternoon in a bit of a blur really.  Managed to buy a couple more scarves for my balding head.  I'll have a good ol' scarf and hat collection by the time I've finished.

I see the Oncologist on Tuesday, and should get the results of bone, liver and lung scans, to see if there's any signs of spread.  Not really looking forward to that.

I'm pretty shattered now.  I don't appear to be able to get through a normal length day, without falling asleep at some stage, but I expected that really, as a side-effect of chemo.  I'm told it gets worse as you go on, so there's something to look forward to!

Lisa's still in Edinburgh.  Leigh's in Bath.. my playmates have buggered off! (I really do have more than two playmates, but to be quite honest, I just can't be bothered to make the effort to see anyone else.  It seems like too much hard work at the mo).

I'm hungry now.. off I go to find some food..

Thought I'd write a few more lines, now I've finished crying into my toothbrush!

It gets you at the strangest of times.  I've managed not to cry since Saturday night, when I cried on my best friends bloke (sorry Phil!).  I can use the excuse of too much alcohol for that one.  Though I'm not usually prone to snivveling when I've had a drink.

I went over to my auntie and uncles today, to feed the chinchillas, while they're on holiday (my auntie and uncle, not the chinchillas).  I just happened to glance at the calendar on their wall, and saw marked on it, the dates that I'd hade bone, lung and liver scans, and the date I'd started chemo.. and I had an impromtu cry at the chillas.  I don't even know why.  I think I'm just touched that people seem to care so much.

Now, just as I was cleaning my teeth, I started again.  I couldn't quite put my finger on why, but I think I'm terrified of becoming 'needy'.  I think I've always been quite an independant person.  I've never relied on anyone for anything, and I've always done my own thing.  More to the point, I've never really relied on anyone for emotional support.. I've always seemed to get there on my own.  Now suddenly, I don't seem to be able to do it on my own.

Not wanting to upset my family anymore than they already are, I've found myself becoming more dependant on my friends for support.  Much as I hate to admit it, I need people.. my friends.  I can't cope without them now.  I'm worried I'm going to become too needy and insecure about everything, I'm just going to drive them up the wall, and potentially away.

I know my moods have been somewhat erratic of late, and are likely to get even worse.  And I know I snap at people, over things I never would have before.  I don't envy the people I care about, having to put up with this.  I just hope they don't get so annoyed by it, that they give up on me.

A lady brought me a bouquet of bright yellow flowers today.  She told me they were from the chapel I used to go to when I was little (I still have flash-backs of the christmas pantomimes!).  Apparently they've been praying for me.  It seems like the world and its mother knows about what's going on.  I don't mind really.  The flowers were a lovely gesture, and though I'm not part of their faith, I appreciate that people are thinking about me.

The whole house is asleep now.  Mum's in bed.  Dad's fallen asleep on the sofa.  I'm getting the impression they've fallen out about something, but I haven't asked, and I can't say I'd be surprised.  They've been under so much pressure lately, something's bound to give.  I can't help feeling responsible.  All this stuff with me has given them stress they didn't need.

Even kitten's asleep on the back of the sofa.. hiding behind the cushions.

It's like the night before christmas, and all through the house, not a creature was stirring...

Day 16 in the chemo house..

Woke up this morning feeling like boiled poo.  Not ideal.  My temperature was high and my right tonsil was really hurting.  I should really have phoned the hospital, or doctors, for antibiotics, but I went back to bed instead, hoping that it'd sort itself out on its own, and next weeks chemo wont be delayed because of infection/low blood cell counts.

I got up again around lunch time.  Temperature had gone back to normal, but still had achy tonsil.  Still have achy tonsil now and haven't felt great all day, so if I feel dodgy tomorrow, I suppose I'd better speak to the doc.

I'm convinced my dodginess is something to do with the very late night/early morning, lack of sleep and vast amounts of punch, at Lisa's party at the weekend!

My hair's still leaving the building at a moderate speed.  It's still not falling out in chinks, but I get a good handfull when I run my hands through my hair.  Managed to freak a couple of people out so far with it!

I've just read an article about Gail Porter and her alopecia.  It says she was scared she'd be judged, and was worried what people would thing.. "would they take the mickey and be horrible?"  She says it was hard to go out in public.. it was scary to leave the house bald.

I've been wondering how long it'll take me to pluck up the courage to go out in public, when my hair's gone.  And even how long it'll take me to pluck up courage to show my friends.  I can't imagine it'll be an easy thing to do, but something I'm going to have to face sooner, rather than later.

I was dreaming last night, about my eyebrows falling out.  there's something esle to look forward to!  I used to have horrible nightmares about losing my hair.  It always was one of my worst nightmares, but not something I thought I'd ever have to face.

Hmm.. not much else to say tonight.  Think it's going to be an early one.  I'm shattered.

by Susan Frisius

You never know when you're going to die, after all, I could get hit by a bus."

Since I've never known anyone who has been hit by a bus, I don't understand why friends and acquaintances often say this when I first tell them I have breast cancer. Do they think the possibility of their being hit by a bus equals the possibility of my dying from cancer? Besides, I could get hit by a bus too.

"You're lucky you have a treatable disease."

Don't get me wrong. I'm thankful I wasn't told, "There's nothing we can do," but losing pieces of my body, having a radiation machine set off a nuclear war in my breast and getting my veins filled with toxic chemicals doesn't exactly make me feel lucky.

"You'll be fine because you have a great attitude."

If attitude really matters, why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer is lousy. So what does that mean?

"Don't worry, if your time's not up, it's not up."

If that's true, why did I bother with the surgery? Should I cancel the rest of my treatments? Do doctors perform surgery and give chemo and radiation for no good reason? After all, "if my time's up," treatments won't help.

"I've read that anger and stress lead to cancer."

Great! Now I caused my own cancer.

"You should simplify your life."

It's pretty simple now, all I seem to do is go to medical appointments.

"I've read that people can keep cancer from coming back by changing their diet. Maybe you should try to improve yours since it didn't keep you from getting cancer. That's why I watch everything I eat."

The person who tells me this knows I only eat natural foods, cook
everything from scratch, don't eat junk foods and rarely eat meat. "You eat white pasta," she says when she sees my puzzled look. Of course, she eats white pasta too, but calls the flour "semolina." Does she really think if I had eaten pasta with "semolina" on the label I wouldn't now have cancer?

One person says, "If you really want to live, you will. Just never give up. When people give up, they die."

If I were hit and killed by a bus would she think I died because
I gave up?

Another person tells me to visualize the cancer shrinking. She says, "If you really work at it, you can eliminate it."

Most conversations end with "call if you need anything." I don't have the energy to call anyone - I can hardly feed myself and get to my medical appointments.

Why do intelligent and sensitive people who care about me say such
things? Can they really believe I'm responsible both for my cancer and the outcome of my treatments?

I think these people want to believe cancers are caused by a person's poor emotional state or diet. This lets them think they won't get cancer because they think they eat properly and handle their lives and emotions well. Unfortunately, it also makes them feel uncomfortable around me because they're afraid they'll find out their attitudes and diets are no better than mine. So I hear, "How can you be so cheerful?" and "All that yogurt can't be good for you," and "Put your daughters in foster care, they're too stressful for you."

I have no doubt that everyone I talked to about my cancer was concerned about me and wanted to help me keep a positive outlook. I'm sure they were sincere when they said, "I'd like to have you over for dinner sometime, but I know everything makes you sick," or "It's good to see you out grocery shopping, I was worried because I hadn't seen you for a while."

I'm sure friends would have been happy to help if I had called them and asked for assistance. Most likely they thought they were being considerate when they didn't visit or call "so I could rest." I think they just didn't know what to do or say.

So what would help me while I'm being treated for cancer?

Drop in or call. The only way you'll know what I need is if you keep in touch. Remember, if I'm out in the community, I'm well enough to be out.
It's when you don't see me that I need your support.

Don't wait for me or my immediate family to ask you for help. It takes too much energy and I don't like admitting I can no longer cope with everyday living. When you want to help, don't ask what I need, just do it. Bring me a meal (white pasta is fine), wash my floors while I sleep, take my children to a movie, get the oil changed in my car, pick up a few vegetables for me at a farm stand, change a burned out light bulb, take my empty yogurt container off the coffee table and throw it out.

Don't minimize the illness that scrambles my life by telling me about simple causes and self cures. Everything I've held important has been touched by it - my ability to raise my children, my work, my independence, my social life.

Don't let your fear of hearing about cancer keep you away. While cancer has become a big part of my life, it's not my whole existence and I am able to converse on other subjects.

Remember my immediate family. My cancer affects them emotionally as much as it does me. My kids and parents need their friends' support now more than they ever did.

If I let you know your company is too much for me at the time, come
back. If I don't answer the phone, call again. I need to know I can
count on you because I'm temporarily unable to count on myself.

If you're feeling helpless because someone you know has cancer, don't. Take them a meal and eat it with them. Talk to them as you wash their dishes. Play a game with their kids so they can hear laughter. Pet their cat until it purrs. Bring over a book and read it to them.

Both of you will feel better when you take action.

When I finally managed to drag myself out of bed this morning (after being up at 6:30, to feed the kitten!), I washed my hair.. let it dry.. ran my hands through it, and came away with a handfull of hair.  Not huge clumps of hair, but much more than normally comes out, so it looks like it's on its way out now.

I knew it would most likely go, and I know it'll come back when my treatment's over, but it's still a bit of a shock to actually see it coming out.  I thought I'd be more traumatised than I am, to see it starting to go.  I'm sure I'll feel worse about it, the more that comes out.  I'm reckoning it'll take 4 or 5 years to get it back to the length it is now, and I often wonder if I'll be around long enough to see it this length again.

So, it looks like the hats and scarves (and maybe the wig) will be put to use soon, anyway.  At least they wont have been a waste of money, I suppose!

I popped into work today, to see Jan.  Jan went on a date last week, with her ex husband of 30 years ago, and hasn't seen him since, until now.  I think it's really sweet, and hope things work out well.  That'd be a real happy ending story!  :o)

.. then I bought some Maltesers on the way home.. lurrvely