It's New Year's Eve again. We have made no arrangements at all - in fact the only thing I want to do at this moment is - and this may sound a bit odd - to find a horse to look at, and I'm really lucky, to stroke.
Must be going mad.
But then I've always hated New Year's Eve and the ensuing, often enforced celebrations. I don't drink so the thought of spending the entire night surrounded by pissed people is less than enticing. And that's before I even think about the whole wretched cancer business.
Yesterday I went out for a long gentle walk around a reservoir somewhere in Bolton to try to shake me out of the most ludicrous sadness I appeared to have woken up with. The walk was beautiful, and even when it turned into a muddy, climbing along gates and under fallen trees kind of affair, I wasn't out of breath, or ill at all. Which started the tears again for some weird reason. Thankfully everyone is still being really patient with me... if anything, I'm the one I'm annoying the most!!!
Anyway, sod the New Year's Eve thing - I promise to make more of an effort next year and the years after that - all 50 of 'em (I've put in my order to the powers that be for a long healthy life followed by drifting off in my sleep one night in my 80s or 90s).
I will go with the sentiment though - to say to everyone, remember to love yourself and your life, and to make time to do useful and purposeful things that make you and others feel good.
Happy New Year 2008, and the most heartfelt thanks to all of you who have been listening to me, and responding so positively to my pleas for support.
Here's my list:
1. Survive lung cancer and become fit and healthy again. And look after myself properly from therein after. Spinach isn't that bad.
2. Work on staying positive and not being such a miserable bastard! Although to be fair, it's only 2 and half weeks since my diagnosis.
3. Keep writing and doing the PhD. Finish the novel by the end of 2008.
4. Keep on riding horses and improving so that I can get one eventually.
Monday, 31 December 2007
It's New Year's Eve again. We have made no arrangements at all - in fact the only thing I want to do at this moment is - and this may sound a bit odd - to find a horse to look at, and I'm really lucky, to stroke.
Friday, 28 December 2007
Funny old thing this living - this sentient awarenes of our own mortality. It's a bit of a bitch really - a double edged sword. I've been face to face with my own mortality on more than one occasion but this threat, from so deep inside, has to be the most frightening of all. By a long shot.
And a lot of people have to face this everyday. It isn't just me. I want to say to anyone out there who stumbles across this blog, who has just been told they have cancer, or that someone they love has cancer, that it gets easier - in your head I mean. You have to acknowledge that it is so terrifying at times you feel you are going to implode with the stress of it all - full fight or flight mode but nowhere to go. But eventually - I phone my friends now, for this - you can talk yourself around again, to see that this is not the horror it used to be. That medicine, combined with diet and a positive mental attitude, means we can survive this.
So what's new?
The biospy reports are back and it is non small cell - that is cancerous but slow growing. In the grand scheme of things it's a bit of a lucky break.
They want to see me at the beginning of January and start 'radical treatment' immediately. They are talking about chemotherapy to shrink it and then, when it is small enough, they can cut it out of me. The prognosis is still very very good.
And I'm proud to report that I am getting much braver about needles (which is just as well really isn't it?!). When the PET scan people rang to give me an appointment for next week, they said we have to give you an injection, and I was like, what? Just one? No intravenous?! Fabulous! The woman must have thought I was going mad!
And the chemo thing is by intravenous for up to 3 hours, and you know what? I really don't mind at all. Whatever it takes really. That heart-pounding, chest heaving terror has gone now, and has been replaced by a much more manageable sense of sadness and resignation - resigned to the fact that this body is going to have to suffer a bit in order to livestrong. And livestrong I bloody well will!
So I have decided that this is not going to kill me. Not by a long shot. All the bloods were normal. I'm otherwise very healthy and people beat this thing all the time.
Once upon a time....
Monday, 24 December 2007
'Twas the night before Christmas, when all through the house
Posted by hesitant scribe at 1:04 pm
Sunday, 23 December 2007
I always wondered how on earth people dealt with the news that they have cancer. Now I know. Or at least I am finding out.
The Armstrong books arrived yesterday, and I am half way through reading the first one, It's Not About the Bike. I won't lie. It isn't an easy read.
It's not easy to read because at this stage I know next to nothing about what I have. I don't know what I'm fighting - what type is it? Is it aggressive? Will it hurt? Or rather when will it stop hurting? I need to 'go back to school' and learn about diet, positive thinking, cancers and the drugs we have in our arsenal.
Yesterday I went out to the supermarket, and then to Nic's for a brew. It was a positive day and I was bright. More phone calls from Canada - this time Michelle, the cousin I grew up with as a sister until I was 7 and moved to the UK.
Today I woke up at 5 am in a blind panic. The pain was pretty unbearable in my left side and I went down stairs to warm the wheat-packs again.
1. Fear: "I thought I knew what fear was, until I heard the words You have cancer. Real fear came with an unmistakable sensation: it was as though all the blood in my body started flowing in the wrong direction," writes Armstrong. How well he puts it - I can do no better. I think perhaps fear is going to be my biggest enemy. It's a hard one because it doesn't allow the mind to respond to logic once it takes hold - it cripples your thinking and leaves you cowering and gasping for breath.
So I put music on and dance now. I sing loudly. Anything to shut the fear out. I will not allow myself to be debilitated by fear, and I think Armstrong took the right approach by finding out all he could about his illness. I have decided that once the diagnosis is complete I will learn all I can about my particular case.
And then we fight.
2. Friends: What comes through in Lance Armstrong's story so far is the people he was surrounded by. People are sooooo important. The phone calls pick me up enormously, and being alone for too long is not good at all. It is difficult for me to admit, after being so independent, that I need everyone's support beyond measure. How do people survive this? Because they have support. Because they stay positive and they can only stay positive by having positive people around, constantly reminding you that this is going to be ok.
3. Mind: I know I said 2 things, but this is equally important. My mind tries its best to stay off topic - forget about things for a while. But half way through a film, you think, "I wonder how bad chemo will be?" At dinner time, mid swallow, you think, "I don't want to die." At bed time I imagine the tumour shrinking, being washed away like an island being eroded by the sea.
"Please go away," I tell it. "You really can't stay in here because you are hurting this body, and this body chooses to live."
This is bloody ridiculous. I haven't asked "Why me?" because there's no point. Why anyone? And no anger. I have no one to be angry at. There's just sadness and fear, and a hoping, wishing, praying, trying to believe-ing that this is all going to turn out fine, and I'll look back in 20 years and laugh at the absurdity of it all!
So... keep it coming - the success stories, the words of comfort, the pull-yourself-togethers, the fight fight fight thises - I need 'em all.
Posted by hesitant scribe at 10:20 am
Friday, 21 December 2007
It's Friday - not that I've been losing track of time or anything ha ha!
The telly is working again - hallelujah! Although having said that I'm on the computer and the kids are parked infront of The Chronicles of Narnia!
Hubby ordered some books for me yesterday - a little light reading jejeje - we have;
It's Not About the Bike: My Journey Back to Life by Lance Armstrong (recommended by Nic)
Livestrong: Inspirational Stories from Cancer Survivors - From Diagnosis to Treatment and Beyond by The Lance Armstrong Foundation
The Power of Your Subconscious Mind: Complete and Unabridged by Joseph Murphy (as recommended by Anna)
Cancer Positive: The Role of the Mind in Tackling Cancers by James Colthurst (because it looked useful)
Not my usual reading material but needs must and all that.
Had a lovely surprise today when the phone rang and it was Desiree and Celia in Spain, with loads of happy stories of successful cancer treatments.... And yesterday a call from Canada from Brenda. I'm so lucky to have all these people who care about me, and it is amazing how much help all the calls, emails and comments are at times like these. I get up in the morning and think, Oh Shit, and then I get online, or someone calls, and I feel better instantly.
It's probably all this being stuck indoors that's doing it, so going to make an effort to get out more. I've been using a wheat-pack to keep my shoulder pain at bay so been asking everyone if they have a microwave I can use when I visit! Except everyone's at work. Bugger!
On the plus side, pain is bearable and no one has stuck any needles into me for a couple of days :)
Quite a boring post today methinks. Stuck on level 71 of Boxworld and can't access the cheat page for some reason so slowly going mad trying to figure it out...
Hope you've all done your Christmas shopping - thanks to the Internet, I've managed to do mine without getting cold!
Posted by hesitant scribe at 3:03 pm
Thursday, 20 December 2007
I don't know what happened yesterday but I completely lost the plot for a while. Quite a while.
And I'd been doing sooo well! Humph!
Today I'm feeling better. And then the satellite dish stopped working, and I thought now that really is taking the piss. A tumour and no telly.
Fear really is a terrible thing. Worse than the pain... well okay, but it's a fine line. The team have reviewed my case - no biopsy results as yet - they want a PET scan doing in a week or so... what does that mean? They said it was to make sure it was localised but now I'm terrified of what else may be lurking. On the plus side I get to be radio-active for a while.
Apologies to those people I keep ringing just for a chat... "Please keep telling me I am going to get through this..." Everyone says just tell me if there's anything you need.... and what I need is a constant stream of people telling me that I am going to live through this. And ride horses again, and maybe even own one, one day. That I will go to Spain a dozen more times, and see all the places I never saw in the world. Big world out there.
I started reading the Roy Castle Foundation site yesterday and it freaked me right out. Not doing that again!
Haven't written any of my novel but did hear a fascinating article in Excess Baggage on Radio 4, about Dervla Murphy. She writes travel books and said she started off trying to write novels but found she was a much better travel writer. My PhD supervisor said my novel was reading more like a travel book, so maybe it's a good thing. I don't know. Keep at it and see what happens I suppose. At least I've actually done a bit of research - hurrah.
And now what? Sit around and wait for the PET scan thing. My friend said I'd be getting my own barcode the number of scans I've had! Part of me worries that I really am in a bad way if they're ordering all these tests, and then a faint glimmer hope thinks maybe it's because I'm only 38 and they'd rather I didn't die so they're being really thorough...
Positive bloody thinking is so hard at times. I try. Really. And I haven't cried today which is something I guess. Besides, my eyes can't take any more after yesterday!
I've been through some shit in my life, I tell you, but this really takes the biscuit! Nic mentioned a book about a cancer surivivor who went on to win the Tour de France so going to read that. Focusing on the good stories.
Listening to Gypsy Kings, "El Camino, mi camino, el camino del verano, porque soy un vagabundo, yo me voy por este mundo..."
Posted by hesitant scribe at 1:32 pm
Tuesday, 18 December 2007
I don't know where to start with this post...
I had a needle biopsy. Hmm.
Good news: Didn't have to drink any dye and no intravenous - Hurrah!
Bad news: They had to cut a hole in my shoulder with a scalpel...
Good news: Local anaesthetics are amazing these days. Didn't feel a thing!
Bad news: They couldn't freeze anywhere below the skin, and they had to stick a finebiopsy needle right into my lung.
More bad news: Right through all the nerves that are causing all this pain just by being next to a 3cm tumour - Yeouch! If I hadn't had to hold my breath JJ would have heard the scream in Bangkok, but luckily it was contained inside my head.
Even worse: So there I was lying face down, clutching my knees with what felt like a giant arrow sticking right through me, holding my breath for the doctor while everyone left the room to scan me again.
"Where did you go?" I said in my head. It was a very tiny voice I noted, like Kate Winslet at the end of Titanic. "Oh God. Please come back!" I was trying to do all those relaxation things - and I found I could relax everything but my upper body. My little ole heart was totally freaked out and tried to run away all by itself.
And then they came back and some beautiful person held my hand, and there was a bang (I knew this was coming) and the needle grabbed a chunk of something... and they checked it... and then out came the needle. (lots of 'ands' - poor writing - take note!)
All over - Phew!
Good news: My lung did not collapse, and I didn't even cough any blood up. A chest X-ray an hour later showed it was all ok - no leaks - and I went home to be watched carefully for 24 hours. I've never sat so quietly in my life!
Nige had to go to work afterwards, so huge Thank Yous to Fay, who came and did the first shift, followed by Nic (my own paramedic on hand - I am sooo spoiled!), and then Anita. They helped me stay calm and bright, and soon I was off my cake on Co-drydamol and Neurofen, so it was okay apart from the breakthroughs between doses. Oh, and my mother who has been cooking for us all every night! Christ - everyone really.
But today I've been great. It hurts but not enough to need pain-killers, and have even managed to blog! No idea if it makes an ounce of sense mind you...
*I do hope they got a piece of the little gremlin cos I really don't want another one of those biopsy jobbies!*
Posted by hesitant scribe at 2:23 pm
Sunday, 16 December 2007
Hard to follow at post like that, eh!
But Aqui Estoy - I am still here!
In response to Zinnia's comment to post below - yes, it has been a rough few days - really rough, but you know, it is amazing how fast you get your head round stuff like this. And I want to say to anyone else who gets news like this, that you just have to be positive and not let the fear demons get you.
My aunt rang me from Vancouver Island, and she really gave me a sense of inner calm. She's just come through this herself, and the more stories I hear of people fighting cancer and winning, the better I feel.
And I am not alone. That means soooo much.
And the 'signs' that this atheist doesn't believe in - ha ha - have been coming thick and fast... to make me laugh, and smile, and shake my head in disbelief...
1. A couple of weeks ago I had a weird dream in which I found myself on a little rowing boat on dark still waters. Death was with me, complete with his cowl and scythe. It occurred to me that there was no fear at all. We chatted for hours, like old friends, and though I can't remember what about, in the morning, as the darkness gave way to the sunrise, Death set me down on the shore and said he'd be seeing me, but not for while. I thought it was about the gallstones, but obviously my subconscious was telling me I'm not going to be crossing the Styx due to this tumour.
2. When the news was first delivered, the cancer nurse asked me to write down her number, and the only paper I had was a post-it pad from the Roy Castle Fighting Lung Cancer organisation! Uncanny.
3. I did a spread using the Mah Jongg cards I have. I don't do it very often and it is has never been wrong so far. The first card up in the centre was the Unicorn - recovery from ill health and looking to the future! The rest of the cards said an unusual freak event followed by care from friends and family, and the problems were ill health and a stroke of bad luck with the solution represented by The Woodcutter (who hacks through entanglements) and The Phoenix (who rises from the ashes). And in the end, it said recovery and a new phase of life begins. The final card was another Unicorn.
So even the coincidences are right on the money!
Pain is still bearable so it could be so much worse. Fingers crossed they can get it with the needle tomorrow and biopsy it, but today I am listening to Flamenco and feeling very positive. As may father-in-law put it, I'm in a very long dark tunnel, but there is light at the end of it, and no truck coming the other way. And then my dad added that everyone was walking through it with me...
.... *fillin' up*
Er... better get on with that novel now. I've had so many excuses for so long, and now I can't go to work for a while, I can use writing to cure myself!
Will keep you all posted whether you like it or not!!!!!
Thank you for all your positive vibes... keep them coming, please XXX
Posted by hesitant scribe at 1:17 pm
Friday, 14 December 2007
Things have been a bit weird this week. I'm not sure if it's really appropriate to blog about this, but then my father-in-law said, "You haven't updated your blog since," and I thought, yes - I do need to talk about it - so I am...
I had the results of the CT Scan really fast. Next day fast. And then you kind of know that something is not quite right.
My gallbladder surgeon called me in the very next day. He had that smile that medical people get just before they drop a bomb.
"I've cancelled the gallbladder operation," he said. And then those words... "I'm so sorry..."
It turns out that the pain in the left shoulder and arm is being caused by a 3cm pancoast tumour in my left lung. The surgeon said he thought something was wrong - a lot more wrong than gallstones, and so he ordered the CT scan to make sure. And thank God he did.
I saw the lung specialist yesterday, and he was very positive. He said worse case scenario is that I have lung cancer and cancer in the lymph nodes, but it isn't in the bones, and it is treatable.
I am focusing on this, and being as positive as possible. After all, I can't let this beat me, and I intend to fight it all the way - if anyone knows about visualisation techniques for cancer, do let me know :) Apparently it can be really good in conjunction with surgery/chemo/radio etc. I'm willing to try anything!
What else can I say? Everyone has been so wonderful, and I send out my thanks to those of you who know me - who have sat for hours listening to me sobbing, and held my hand to get me through the fear. I feel so sorry for my family... I hope I'm not going to be too much of a burden on them.
On the bright side, the lung specialist said we got it early, and that although the road ahead is going to be rough, it is do-able. Lots of people have open-chest surgery and survive so there's no reason why I shouldn't. And what's a bit of pain in the grand scheme of things? I'm in pain all the time anyway so should be getting good at dealing with it! And ginger - ginger is good for nausea...
I have to be brave, I tell myself, and I will get through this. [Repeat until it sinks in.]
It is an awful thing but laughter is a good medicine so do feel free to send me jokes ha ha.
Now is not the time to be frightened of a few poxy needles. We have much bigger fish to fry. I'm having another CT scan on Monday with a needle biopsy - so that'll be fun. I think the CT scanner is going to become quite a regular occurrence, and as for the old surgery, well, let's deal with that when we get there, eh.
At least I haven't been given a death sentence. It could've been far worse.
So... I'm officially off work for the time being, and as I say, people have been absolutely fantastic. I think I just need to keep hearing all the positive stories of recovery, and the cancer nurses are fab. They are at the ready with the hankies and I even got a cup of tea yesterday. That's when you know you're proper poorly!
I'll keep writing. It's good to talk about it, I think. It's good because it keeps me telling myself I am going to survive this.
Wish me luck for the CT Scan on Monday - fingers crossed they can reach the little bastard to get a biopsy.
Will keep you posted!
Posted by hesitant scribe at 11:03 am
Wednesday, 12 December 2007
"Depending on the reason for your CT Scan, you may be required to drink a small amount of contrast dye OR have a small injection..."
Yesterday was scan day. It marked another mile-stone in this adventure into medical procedures.
I arrived at the hospital gagging for a drink, having been up for four hours and nil by mouth, so was pleased when the old lady next to me in the X-ray department said the nurse would bring me a glass of black-currant if I asked her. "It isn't very nice, mind," she added with a grimace. "It's not Robinsons."
It certainly wasn't.
It was gastrografin: a cocktail of:
amido(dia-)trizoic acid (that can't be good for you!)
disodium edetate (or this?)
saccharin sodium (what's this? fake salty sugar?!)
polysorbate 80 (I give up)
anise oil (YEUCK!)
and purified water.
It tastes foul. Mouth was indignant and throat constricted. Brain said get on with it, but stomach analysed first millilitre and decided it wasn't good for us. WTF are you doing? it screamed, and sent it back with added bile. Brain said shut up - it's better than an injection! So somehow I kept it down.
It is worth noting that no one else was complaining so I told myself to grow up... although the old woman emerged with a strange look on her face, gave me a half-hearted thumbs up, and staggered off down the corridor.
The scanner itself is not a problem. A marvel of technology, it has loads of magnets that whizz round inside the scanner. It is very loud once it gets going, like sticking your head in an aircraft engine turbine. But it's a ring the bed moves through rather than a narrow tunnel, so I figured I can do this. No problem. And then Nurse came at me with the cannular.
Now I'm bad enough with injections and blood tests, but having a line in is horrendous.
"You'll feel a small scratch," said Nurse.
Why do they say that?! It is not a small scratch at all. I'd rather she yelled Pin Pin (you'll have to listen to Russell Brand's Radio 2 Show).
So there I am, laying on the couch with my arms raised above my head, and the most horrid pain in my arm where the cannular is sited, thinking it must be hurting because of the stuff going in. The nurses go and hide behind their lead-lined room, and the magnets go into spin overdrive, deafening me. I'm singing, "Quiero volar, volar muy lejos..." [I want to fly, fly far away...] and get stuck on this one line because the rest of the lyrics have jumped ship.
Through the whirring and whizzing I hear; Breath in. Hold... ... ... ... And breath. Over and over again.
Fifteen minutes later another voice comes through the speaker saying, "We're running the fluid through now. You'll feel as though you have wet yourself, but you haven't."
And then it comes through. Stuff travels amazingly fast around the body once in the blood stream. It's not something I've ever noticed before, but even as Nurse is finishing her sentence, I do indeed feel as though I am sitting in hot pee. And there is a weird heat everywhere. It doesn't hurt at all, but it does induce a bit of panic as Brain and Body demand to know what's going on. Someone described it as feeling like your bones have turned to molten copper, and you know, it wasn't far off.
Another fifteen minutes later and Nurse re-appears to remove the intravenous cannula. All done.
Except my arm hurt for the rest of the day, and I've since discovered this isn't normal. You aren't supposed to be able to feel a cannula. I always wondered why everyone else looked so at ease with their drips, while I couldn't bear to have a line in, due to the intense pain. My friend who is a paramedic says I might want to mention it to my surgeon, given I'm going to have a line in after the operation next week. And it will hurt. A lot. Can't wait. Combine that with the drain and I'll be in pleats of laughter, eh.
I drove home (no one told me not to, and I didn't read the patient info on-line that says, Do not drive afterwards). I was sick for the rest of the day, in a dry-retching kind of way, and had stomach cramps until about an hour ago.
Still. Umpteenth thing down, and two to go: Preop day, and then the Big One just in time for Christmas.
But the old woman in the hospital had cancer of the oesophagus, and the other woman who was may age had had breast cancer, and now had bone cancer, so I should thank my lucky stars that all I've got is gall-stones, cysts, and dodgy bright patches, that hopefully - fingers crossed - the surgeon can fix.
And then I can recover and get back in the saddle - I sooo miss the horses!
My students sent me a get well card too, which was lovely, and I'd just like to say thank you to everyone who has emailed, or phoned, or come to visit my miserable arse at home. It has helped so much. Thank you all!
Thursday, 6 December 2007
what are good and not so good - to steal Mr Mayhew's format (hope you don't mind Jon but too ill to think straight at the moment, let alone be all inventive and original)...
Not so good things in no particular order:
1. CT scan next week - scary!
2. Operation 5 days before Christmas - even scarier!
3. Christmas is coming and I can't do a thing about it.
4. We can't find a Nintendo Wii anywhere (at normal price from normal shop) - boo hoo!
5. Still sick - haven't written a bloody thing - have not left house in ages unless to go to doctor and/or hospital - am in limbo!
And on a brighter note...
1. The dishwasher is fixed - hurrah!
2. I'm reading loads.
3. Husband and children are healthy.
4. It's nearly Christmas.
5. Soon I will be better.
Hope everyone is well out there in yonder ether world...
Posted by hesitant scribe at 5:44 pm