Dee's Blog Bit

There I was, happily (?!?) scouring the net for information on the timing of Herceptin, after chemo..
Considering the capacity of my brain, and my ability to focus has all but disappeared, I think I was doing quite well, making some sense off all the medical jargon I was ploughing through.

Then it happened..
A song came on tv.  A song that 's on a CD, which I used to play all the time in my car, on my journeys to North Wales, a few years ago.
These were the journeys to see my now ex.. the 'love of my life'.. the person I thought I'd spend forever with. This was the relationship that stupidity arsed up, and that I've regretted it arsing up, ever since.

So that's that.. any focus I had on my Herceptin search, is now gone.
Gone, in favour of romantic memories of days gone by.
Gone, in favour of wondering what could've been.
Gone, in favour of wondering, yet again, if I should try and get in touch with him.  This is a thought that pops into my mind at least once a day.  Should I just leave things be?  Should I try and contact him, because of this nagging feeling that keeps telling me to?  Should I do it now, before it's too late?  When will 'too late' be?  Maybe it's already too late.. I don't know

Today, I ordered a pair of purple Converse 'sneakers'.  It just doesn't seem right that someone young enough to be wearing footwear like that, to have/had breast cancer.  It doesn't seem right that anyone should have it.  The wonderful women I've come to know, through this crappy disease.. they definitely shouldn't have it either.

Well, I went to the Faithless gig that I'd been looking forward to so much.  It didn't let me down.  Infact, it exceeded all my expectations.  Myself and Lisa were on the guest list.. we got in for free, had fantastic seats (though we obviosly didn't sit!),and met the band afterwards.

Aubrey (the bass guitarist) was the one who put me on the guest list, so he was the person I wanted to speak to most, to thank him.  And I did speak to him.. what a lovely bloke.  They're all really nice, down to earth 'normal' people.  It was a fabulous night.. one I'll never forget.  And if I start to forget, I have my fully autographed ticket, to remind me!

That was my third Faithless gig in a year.  Now I have to wait another couple of years, before they'll be touring again!  The first thing that came into my head, when Aubrey said it'd be another couple of years, was "but I might not be alive then!"  Fortunately, that stayed in my head and I didn't speak it out loud.

I've had back ache, at the bottom of my back, for the past week or so, and a bit of a stiff neck, for the past few weeks.  these are things I'd have never thought twice about, before breast cancer reared its ugly head in my life.  Now I'm paranoid about every ache and pain.  I've never really suffered from back ache before, so there's alsorts going through my head, even though I know it's most likely nothing to worry about.

On Wednesday, I'll be having my 5th chemo.  One more to go after this, to be followed by being fried by radiotherapy.  It's scary to think that these methods they use, to hopefully get rid of our cancer, can actually cause cancer.  Is it really a good idea to be fighting fire with fire?  Should I have had chemotherapy?  Did I really think that poisoning my body was the best thing to do?  Do I now think that irradiating bits of my body is the best thing to do?  After this, should 'hopefully' come Herceptin, which comes with its own risks of heart failure.  Is it really right, that I'm beating up my body so much?  Does anyone really have the answers?

Last night, while I was nodding off to sleep, I had a realisation..

I realised that it wasn't the fact that I have/had/am being treated for breast cancer that I needed to accept.  I've had no choice but to accept that.
It's the fact that it could come back at any time.. it could spread.. I could ultimately die from it, that I needed to accept.
I needed to accept that, at some time.. maybe sooner than I'd hoped, that I'm going to die.

Being diagnosed with breast cancer made me feel incredibly mortal.  Dying isn't something I've thought much about before.  You don't think you need to, before you even hit 30!

Have I accepted that I MAY die much sooner than I thought I would?  I think I'm getting there, and as a result, I think I'm feeling much better about my life now.
Or maybe that's just today, and I'll feel terrible again in no time!!

I seem to be neglecting this blog of mine, lately.  That must be a good thing, right? It must mean I have far better things to do!  It must mean I actually have a life!..  Well actually no, not really.

Everything's still pretty much the same sameness.  I had my 4th chemo last Wednesday, which made me feel like a zombie again, and I just couldn't focus on typing anything intelligible.

I spoke to my doctor yesterday, to find out if she'd heard anything back from the PCT, about funding Herceptin for me.  She'd had a letter from them to say they were 'considering it', which is the standard response.  So I still don't know whether or not I'm going to have to try and find £40,000 from somewhere, to pay for it myself.  Chances are that's what's going to happen.

I just feel it's so wrong, when the country seems to be wasting millions of pounds on building 'structures' as tourist attractions, yet they wont pay for what could be life-saving drugs, for many people, when we've paid into 'the system' for years.  It makes me angry.  I could very easily get on my soap box about this, but instead, I'll have a glass of wine!

So, what else has been happening?  Not much really

Yesterday, I ordered the CD single of "We Laughed", by Maxine Edington and Billy Bragg.  Maxine wrote this for her daughter, when she was told she only had six months to live, because she was dying of secondary breast cancer.  The money from these CDs is going to charity.. please go buy it.  I'm sure I'll have a bit of a snivvel when i listen to it.

I've done all my christmas shopping.. in November.  It's un-heard of! But it's not like I have anything better to do, to be honest, so I thought I may aswell get it over and done with.

I wrapped some of the pressies, the other night.  And cried while I was doing it, wondering if I'll still be here next christmas, to do the same.  The ones that aren't wrapped, have little post-it notes on, saying who they're for.. just incase anything happens between now and then.  I always thought wrapping christmas presents was supposed to be a happy time!

Paranoia's set in a bit, the past couple of weeks.  I've had a stiff neck for a couple of weeks, so of course, I start wondering if it's bone secondaries in my neck.  Then I developed a bit of a sniffle and a cough.  So of course, I was a little worried that I'd developed lung mets.  the stiff neck's still there, but the cough's gone, so I don't think I'm dying from secondary lung cancer yet!

My hair seems to have started growing a bit, so I have a few millimetres in some places, but my eyebrows and eyelashes appear to be vacating the premises now.  Not noticably yet.  I'm hoping I'll manage to hang onto them really.

To end on a positive note.. a week tomorrow, I'm off to the Faithless show.  Myself and my 'plus one', are on the guest list, so really looking forward to that!

Tomorrow is my fourth chemo.

Four months ago today, was the day I was diagnosed.. a third of a year. 8th July.
In some ways, it seems like much longer than that, but in others, it seems like yesterday. I remember every single detail of that day.

I remember waking up that morning and thinking, well, it's results day. They haven't called me in earlier, so maybe, just maybe, I'll get away with it not being cancer. Even though I knew deep down that it was.

I got ready and walked out of the house. It was a nice sunny day, and I was going into Nottingham before I went to the hospital. My appointment wasn't until 3:20pm.
I walked to the car, and saw my dad outside. He asked what I was up to today, and I replied that I was going to Nottingham, taking my dongle back (bluetooth dongle that I'd bought for my phone/pc, that didn't work) and maybe do a bit of shopping.

I got to Nottingham, took the dongle back to the shop, and met my friend, who was coming to the hospital with me.
I'd parked in the park & ride, so had to get the tram back to the car.
We got to the tram stop, to the announcement that all trams had stopped running, until further notice. Cue panic!
We hung around the tram stop for 10 minutes, with me getting myself more worked up and panicky by the minute, because I knew I had to get to the hospital on time.
We ended up getting a taxi back to the park & ride.

Drove to the hospital, with friend in tow.. with shakes and clammy hands.
Got to hospital.. got out of car.. cried.

Got into hospital, sat in waiting room, and said to my friend "why does everyone else look so calm, and I feel like I'm going to throw up?".

After a 40 minute wait for my delayed appointment, they called me in.. friend in tow.
I walked into the room and thought there were more faces there, than should've been, if they were just going to tell me I was ok.
I sat down, and the consultant said "blah blah blah blah I'm sorry to say it's cancerous blah blah blah" (the middle bit are the only words I can remember). I cried for about 30 seconds. Then she talked about surgery, and booked me in.

I had to put the horrible gown thing on again, to have a mammogram (I'd only had ultrasound on my first visit), to see if they could tell if there were any more suspicious areas. They couldn't.

They then took me (friend in tow), to the nice little room, with the comfy sofas, pretty tea cups, and the chunk of amethyst on the table, next to the box of tissues, and told me everything again.

I was glad when we escaped out of there, into the fresh air and sunshine.. I cried a bit more.
I left my friend at the hospital. He said he'd get a taxi home, because it was the opposite direction I had to go, to get home.
So I drove home, alone, in a blur of tears and wondering what the hell I was going to say to my parents, who knew nothing about what was going on.
I remember the music that was playing in the car. I can't listen to that CD now.

Just before I reached home, I pulled over at the side of the road, and phoned Jan, my workmate and friend.
She knew I'd been for tests, and she knew I was getting results.. I'd taken the day off work especially.
I blurted out to her, that it was cancer.. and cried some more. I could tell she was really trying to keep it together, but her voice was shaking.

Then I got home, planing to sit my mum and dad down, and tell them together.
My mum hardly ever goes out, but she'd gone out.. to her aunties house.
My dad was sitting on the bench, at the front of the house, in the sun.
I got out of the car and asked where my mum was. My dad said she was visiting her auntie.
I asked my dad to come inside, but by the time I'd got to the door, and got my key in it, I was a mess.
My dad asked me what was wrong, and I just blurted out that I'd got cancer.
He cried, he hugged me, he went to get the car keys to fetch my mum, looking like he'd just been punched in the stomach.

While he was gone, I phoned Lisa, and told her the news.

Then my mum and dad got back. Then my auntie and uncle turned up and everyone cried.

I spent the rest of the evening feeling like I'd just had my whole future, and my life, taken away from me.

It was a horrible day. The worst day of my life.

I'm quite impressed that I've managed to type all that out, and didn't have tears in my eyes, until I wrote about having to tell my dad. I always knew that telling my dad would bethe hardest thing I'd have to do.
I knew that, when a couple of weeks before, I was sitting in my room, looking out the window onto the back garden, seeing my dad sitting in the sun, and wondering how the hell I was going to tell him I had cancer.
He had testicular cancer 17 years ago, and I knew it'd hit him like a ton of bricks.

So there ya go.. it feels like yesterday, but I've managed to survive a third of a year, so far.
In 30 years time, I hope I'll still be here to tell that tale!

First off, Dillon kitten seems to have perked up today.  he's been back to the vets, who said his temperature's down, from being very high yesterday.  He's got a course of antibiotics, so we've got to wait and see how he is after that.  Hopefully, it was just a bug.. fingers crossed.

Secondly..

I know a woman (she's very young), through a web forum, who's found a lump in her breast.  She's spent the day at the hospital today, having various checks, and has to go back for scans, etc.  She asked me how I reacted when I found out I had cancer, and I blurted all the following out.  I'm thinking this is what I'd say to anyone, so I may aswell put it in here, just incase it might be of some help to someone who's playing the waiting game..

When I found my lump, I panicked, shot out of bed and was on the phone to the doctors within minutes.
I knew what it was, as soon as I found it, and no amount of people telling me it'd be nothing 'because of my age' made me feel any different.
I had to wait a week for an appointment at the docs, another week for an appointment at the breast clinic, then four days after that for the results.

Before I'd been to the breast clinic, I remember sitting at the pc, looking out of the window onto the back garden, and seeing my dad sitting in the sun. I burst into tears, wondering how the hell I was going to tell my dad I had cancer (he'd had testicular cancer 17 years ago).
I told a couple of close friends that I'd found a lump and was having tests. One of them came with me for tests, and for my results.
I never mentioned any of it to any of my family, until I'd had the diagnosis. I suppose I didn't want to worry them.

When I'd had all the tests, and went for the results, and they told me it was cancerous, I wasn't surprised, but I was still shocked, if that makes any sense.
I cried a bit, then it was like I was in a daze for a while, until it really sunk in.
They tell me it sinks in even more, when all treatment's finished, and that most people have their worst days then.. so that's something to look forward to!

I can't even explain the range of emotions I've gone through, from then up to now.
People describe it as an emotional rollercoaster. Some days I think it'll never come back, other days I'm convinced it's going to kill me. I've considered beating it to it, and doing the job myself. I've had huge moodswings since I was diagnosed. It certainly hasn't been an easy ride.

It'll be 4 months on Tueasday, since I got the test results, and most of the time now, things don't seem as bleak as they did in the first few weeks.
The week after chemo, I tend to feel pretty terrible, but the other two weeks aren't bad.
I know this'll change my life forever. I know I'll never have the 'normal' I had before. And I know I have to learn to live with the fear of it coming back.

I'm not saying any of this to scare you. I don't want to scare you, and chances are yours'll be nothing.. but when I was waiting for my results, I found it helped that people were honest with me, about what they'd been through.
I wanted to know what to expect, if it turned out the way it did. I couldn't stick my head in the sand.
People telling me to be positive and keep my chin up didn't help.. it made me angry.. it still does. I know they mean well, but the people who say things like that, are usually the ones who have no idea how you feel.
You're bound to worry about it. It's not something you can just forget about.
It's natural to be scared about all this uncertainty. The waiting's the worst part.

I really hope I haven't scared you, and here's hoping you'll be able to come on here and say "guess what folks.. I was worrying over nothing!".

After spending the best part of the last two weeks, attempting to drag myself out of the depths of despair I'd sunken into, I started to feel brighter, a few days ago.. more like 'me' again.  So I intended to make the most of it, because I know I'll go back to feeling like an alien, after my fourth chemo, next week.

Someone out there seems to not want me to feel ok.

Obviously my dad having cancer, 17 years ago wasn't enough..
I had to get cancer too.
Now apparently that's not enough.
My baby Dillon kitten's been a bit poorly over the past couple of days, so we took him to the vets this morning. She took his temperature, which was 'very high'. So she gave him an antibiotic injection and an anti-inflammatory injection.
But he's got to go back again tomorrow for blood tests, because the vet thinks he may have Leukaemia.

Now I feel bad, cos I've brought this poor kitten into a household that seems to be bloody jinxed!