Hurrah! Today is the last day I have to go get chemo. This is a day to celebrate indeed!
Now here's what's confusing...
Today is Monday - but because I had the chemo a day later due to Easter hols, it's really only Sunday inside my body.
So today is like Sunday (i.e. sleepy bobies/face down on couch time)... because the steroids have run out...
But am really feeling like it's Wednesday because am sitting up on the computer (...ish!), and even contemplating having a shower - while talking on msn IN SPANISH! And not only in Spanish, but in stupid Spanish texty msnny speak! Like 'ketal' instead of 'que tal'...
How fabulous am I?!!!
*Promptly falls off chair and lands in chemo-fied heap*
What was that about pride and falls again?!
Monday, 31 March 2008
Hurrah! Today is the last day I have to go get chemo. This is a day to celebrate indeed!
Saturday, 29 March 2008
Good Afternoon, All!
What a wonderful day it is. Yes, despite the rain, and the grey skies! (After all, may garden needs some watery loving if it's to come up all green this spring!) It is a wonderful day, despite the c-word, and the gallbladder attack I had last night - what bloody fun! (Because on the bright side, I have liquid morphine on hand now, so just took a load of that and it soon settled down!)
Also had some proper good sleeps, so although I'm still totally whacked, I'm not crying and sad whacked!
I have to say, at the end of this chemo lark, what an interesting journey it's been. I still have a booster (set of chemo pills - Vinorelbine) to have on Monday, and given I'm a day behind after the Easter Bank hols, I'm wondering how I'll actually get to the hospital, but then that will be the end of it. No more chemo. No more awful being plugged into an IV line that hurts my veins and turns them into 'old rope'. There are no words as to how fantastic this feels!
And then there's some lovely things in the pipe-line... only one of which is the trip to Centre Parcs. So I'll keep you all updated as and when things happen. And of course, I have my eye on the Farmers Guardian for Horsie Ads, whilst doing lots of positive thinking about being healthy and well, and being in full remission.
So all in all, things are going well.
Which leads me back to saying, don't cry!
I love the fact that some of you have been moved by my writing, but please don't be sad! Be inspired to love your own life, whatever problems you may have. Wake up in the morning and give thanks for being alive (in other words, don't wait till nature sticks a gun against your head before you appreciate it!). Open the curtains and look out at the weather whatever it's doing and remember it isn't raining to be horrid to you, it's just being itself - the weather!
I've been through merry hell and back, but in the midst of it all I have learned so much. And the most important lesson of all is that I love being alive and I want to live for a very long time. Even when curled up with gallbladder pains, or throwing up in a bowl, looking like utter shit, dealing with constipation and piles... the list is endless... I still choose LIFE!
Oh - and the novel! Must get novel written! Working on it folks! Really. I am! I'd have finished Chapter 2 if they hadn't have plugged my right hand in to the old IV!!!
Thursday, 27 March 2008
The last session of chemo went reasonably smoothly. I think that was down to the fact that it was the last one and every time I felt wobbly I just told myself, "It's the last one" and I felt much more able to cope. I also keep on telling myself that I am healthy and strong, and feel really good. I think it is working!
The nurse said the veins in my left arm are already like old rope, so she had to plug me into the chemo on the right hand, which meant no writing for me this stay. Yeah right! Like I ever get much writing done in there any way!
Next to me this time was an older lady who had an unfortunate accident and another woman who had bladder control issues, so I'm afraid it was the stench of bodily fluids as far as the eye could smell. (Bit like cycle two as I recall...) I really do admire those nurses who can clean it up so well. I was retching all the way to the jug room and back again (remember we have to pee in a jug to measure fluids in and out?!).
There was a woman who is terminal in there too - just so depressing. The hospital is the worse place to be if you're trying to get by on positive thinking, I tell you!
So a relief to be home on Wednesday away from the poo and the wee, and the dying. I felt pretty icky but not as bad as previous cycles I don't think. The pain is fairly do-able too, and no painkillers as yet, so feeling pleased about that too. Goodness me, I shall be on the up from now on! No more chemo IV! No more Cisplatin! Oh I am pleased!
I am healthy and strong and feeling good. Repeat after me!
Posted by hesitant scribe at 3:46 pm
Monday, 24 March 2008
So I threw my hands up to the universe (which has always been an excellent provider) and asked for somewhere to keep a horse, and someone to help me with it, and a horse.
And I waited.
And lo and behold, in the last week I have been offered somewhere to keep a horse, someone experienced to share it with (T), AND even a horse, on loan!
Sadly, thinking about it sensibly, the horse for loan isn't really suitable. She's a lovely mare, with what seems to be a lovely a nature (in the short time I spent with her on Friday), and she was good as gold when I lead her out to the field and turned her out.
At 15 hands, she's too small for me really (I want something 16.2 +), and she's too small for T. Also, T might like to compete, and so might I for that matter, so I need something well schooled that can help bring me on, and so sadly, this mare isn't the one. I will go and see her over the summer though.
BUT it has got me thinking really seriously about owning a horse. I started looking at ads in The Farmers Guardian and found a couple of perfect horses, for under £3K, with tack. Not that I have 3K, but the universe will provide if it's meant to be :)
It's a big commitment though, isn't it? It's 24/7, Christmas, New Year, Bank Hols. It's twice a day (although if I share with T, it'll be part time and therefore more do-able). And the cost is heavy duty too - and I'm out of work now. And if in work, there's no time to do it all any way, so you end up paying full livery fees for someone else to look after your horse!) But then it might just be the thing to keep me alive, you know. Healthy outdoor living. All that exercise.
Costs - ones I can think of off the top of my head...
Livery (room and board!)
Shoes and/or trimming every 6-8 weeks.
Tack/Clothing (rugs, bits and bobs that need replacing)
Lessons (because you still need those!)
I've seen so many people rush into buying a horse in the 18 months since I started riding. People who buy the perfect animal and fulfil their dreams only to find they're terrified of it 3 months later when it takes the rise out of them and completely walks all over them (literally in some cases). Or they realise they can't handle mucking out twice a day, everyday, so they stop going to the stable, and just leave the horse alone for days on end. I really don't want that to happen to me.
I need a gelding who is a gent. Who will let my kids ride him, and yet who has some potential to do more - just a little more. Some dressage, some jumping, hacking out... Can you see me in Pony Club ha ha ha!
I guess I ought to start to doing those pools, eh. Or better still - like, erm, finish my novel and sell the bloody thing, and repeat!
Sunday, 23 March 2008
... to say look what my children did this week!
I went out for lunch on Wednesday, and came home to discover the girls had put the trampoline up, all by themselves!
As you can see, there isn't a lot of garden left once the 13ft tramp is up, but by golly is it fun!
Of course it's rained non-stop since they put it up...
... but today is dry so I put a big coat on and went and had a little bounce. A very little bounce. And one somersault.
Have just taken some codeine and paracetamol, so should recover in time to cook the roast!
Posted by hesitant scribe at 12:35 pm
Happy Easter to everyone. May you gorge yourself on chocolate and other luscious things.
My 8 year old woke me up this morning with hot buttered toast and orange juice. How wonderful is that!?
I do have a little pain in my shoulder, and Diclofenac seems not to be working any more (so been swigging away at the oramorph through the night), but I'm going to jolly well ignore it and cook a big Sunday dinner for the family regardless! I got lovely leg of lamb to do, with all the trimmings. Let's hope I can remember how to do a roast - it's been that long. And apologies to all the veggies out there :(
I can't believe it's Sunday already. Where did this week go?! I can't even think what I've done, either! I've been out everyday though... visiting people, doing stuff, shopping! Cramming it all in before the last lot of chemo on Tuesday!
The last lot! Hurrah!!! It'll be something to focus on while feeling crap. I shouldn't say that! I'm going to sail through this final lot! Sail through, I tell you!
Friday, 21 March 2008
More lovely days! In fact, so lovely I've been out and about rather than stuck infront of the computer!
Did you know that horses are still sold in guineas?!
This got me thinking. Like what on earth is a guinea worth? And what is the deal with old English coinage?
To the first question, it turns out a guinea is worth £1.05 so the auctioneer take the extra 5ps as commission! Also, you paid tradesmen in pounds, but artists in guineas, in times gone by.
The answer to the second question took about three hours with my dad going, "Now well I think that was it... no hang on a minute..." and me going, "I am soooo confused! How did you ever do maths at school?!"
And then on Wednesday, whilst out for lunch with the girls and shopping, the man in the rock shop gave us a printed out list that made it all very clear.
So here goes:
Pounds (£) Shillings (s) and Pence (d)
The coins before 1972 in England:
4 farthings (or four things) = 1 penny (1d)
2 ha'pennies (half pennies) = 1 penny
thruppence (a thruppeny bit) = 3 pennies
sixpence (six penny bit OR tanner) = 6 pennies
shilling = 12 pennies
two shilling piece (two bob or florin) = 24 pennies
half-crown = 2 shillings and sixpence (2s 6d) = 30 pennies
crown (five shilling piece) = 5 shillings (5s) = 60 pennies
one pound coin (sovereign) = 240 pennies
And in Note form:
one pound (quid) = 20 shillings = 240 pennies
There's lots more interesting facts here
Wednesday, 19 March 2008
Today was another one of those wonderful days, and I've a feeling most days are going to be wonderful from now on. (Now there's positive thinking if I do say so myself!)
First thing this morning my friend came over to come with me to the stables to watch my lesson.
"I've brought a camera," she said. "I hope you don't mind if I take some pictures."
Mind?! Are you crazy?!!
It was a jumping lesson on a mare called Siobhan. She's a feisty one and had her ears pinned back as soon as I approached, so my instructor put her bridle on, saying she was paid to risk getting bitten. I'm at the stage where I kind of wanted to be taught how to deal with her, but I let her get on and settled on watching intently. The technique? Go in to stable confidently and simply put on bridle, taking care not to get fingers in mouth. Easy!
I rode Siobhan (silly name for a horse!) last jumping lesson, and although I was told she can get excited, she hadn't last time. Obviously she was just duping me into a false sense of security! As soon as we started jumping she stepped up the pace (which of course was marvellous fun!). We did cross poles and a low upright, but the purpose of today's lesson was to start learning about combinations of jumps, and making it round a little course. I had such fun, despite not having an awful lot of control over where she went, or how fast she went there!
This time Siobhan got really excited. The first time round I managed to get around the intended path, but it was jerky and difficult. After that, to quell her excitement, we were supposed to trot in a controlled manner over ONE jump, and then canter the rest, only she put her foot on the gas at C with sheer joy, and raced over both sets of cross poles (as illustrated above)! Try as I might I couldn't get her to jump one without the other, and in the end she landed badly on her front foot and we called it a day.
It was such good fun. I love jumping! And I love the challenge of trying to work out a course and get the horse to actually follow it! I was going to go on hack on Friday, but the road's gone and collapsed - which is very selfish of it I think - so no hacking till they fix it. Boo hoo.
Addendum: My friend took a wee video too... (note that Siobhan wanted to go over the second set of poles and I had a real fight to get her to turn in, hence the wobbles!)
After riding I met up with two of my old students for lunch. I had such a good time, and it was lovely to catch up with them at the end of their final year. It reminded me of how stressful that time was - trying to finish a dissertation along with countless other essays. It was a nightmare (and this is meant as consolation all you final year BA students!) that only paled into insignificance when I started the PGCE (Primary) straight afterwards! Anyway, we had a lovely lunch, great conversation and a good laugh. And they brought me an orchid! How cool is that!
And the day isn't over yet... having had a fab meal cooked by hubby, I'm off to luxuriate in a lavender bath to ease the old shoulder pain.
And Easter is coming too! Chocolate! Can't cope!
Monday, 17 March 2008
Good News: I wrote a short story and did send it off.
Bad News: But I couldn't tell you because it was a big secret.
Good News: It got short-listed for Radio 4, making it into the final 15.
Bad News: But couldn't.
Good News: I did very well to make the final 15 and the editor said they loved reading it.
Bad News: Only it didn't make the final 5.
Never mind. It is a start! I actually made a shortlist!
Rode Henry today and had a fabulous time. We did flat work, and I learned to control his enthusiasm. Henry has 2 speeds; walk, and canter. I learned that by turning him into a tiny circle he has to slow down to trot, bend lots and work loads - which of course he objects too. After a circle or six, he finally got the message and kept a steady trot for me, so then I let him have a brisk canter as a reward.
Fantastic. I feel like I've really learned something today.
Plus - no sickness, and only taking diclofenac for what is a very mild pain in the shoulder.
And I had coffee with a friend I haven't seen in years, after which hubby cooked dinner.
A perfect day, I'd say!
Sunday, 16 March 2008
JJ was talking about having confidence issues over at Tea-Stains She was talking about her work as a sculpture, and about writing too if I'm not mistaken.
And it got me thinking.
Because it seems a lot of us have confidence issues.
Especially, dare I say it... us women.
When it comes to confidence issues I think perhaps, I might be a little bit of an expert.
I didn't begin life with confidence issues. No child does. A baby doesn't come into the world thinking, "If I try to talk they'll laugh at me." No. It babbles away, blowing raspberries and cooing. It's the same when it comes to getting around. Does the baby think to itself, better not let anyone see me falling on my face? No, life does not begin with confidence issues. Experience causes them. Lots of experiences.
One of my biggest confidence issues came from being bullied as a child in school. Ten years of it, to be exact. Either I was a complete bastard who was so mean and nasty to everyone that I deserved to be beaten to pulp every day, or I was such a sad little loser that the laws of survival of the fittest meant I didn't deserve to live... But I was only 7 when it started. And on my first day of school in England the only thing I said was, "Would you guys play with me?" Okay, so I was talking to girls, and admittedly I had a very strong Canadian accent, but still. "We're girls, not guys. F***ing get her!" was not the response I had anticipated - especially not when they were only 7 years old too!
And once it starts, confidence falters and then runs as fast as it can. So I became a victim who learned to hate myself, lose faith in any abilities I had... you can work out the rest, I'm sure.
Of course you can survive just about anything if you put your mind to it, and eventually, at 17, I removed myself from the area and began a new life in London, but it took years (and plenty more harrowing experiences) before I really began to build confidence in myself. Indeed, I am still working on it, but at least I am now sharing my writing with whoever will listen. Now I have the confidence to say it's okay if people don't like what I write. Damn - it's okay if they don't like me! Bullying is something I hope to write about after I finish my novel - something to help others who have been bullied to see that it is not the end of the world and can actually be very positive in terms of character building!
So you're probably wondering why the Penguin pic at the outset of this post. Well, one of the many silly (but nonetheless hurtful) things the kids at school used to say was that I walked like a penguin, and they would call me Penguin Feet. And back in the 1970s we didn't have Pingu, or Happy Feet to soften the blow. To make it worse, I was a scrawny, lanky kid too, so I kind of gangled about and was ever so self conscious about it all.
I do actually have what nicer people might call 10 to 2 feet. And it makes horse riding somewhat difficult (though nothing like skiing!). A couple of weeks ago I was talking to a horsie person about this very problem.
"My feet are on at the wrong angle," I explained to this new friend. "It means I can't have my feet parallel and bend my knees, so I can't have my feet parallel to the horse in stirrups either."
She didn't look convinced. I think she thought I was trying to get out of the fact that in all the pics of me riding, my feet are sticking out enough to make me fail BHS exams! The conversation moved on and I thought the topic had been forgotten.
But later, as we walked across a field, she looked down at my feet and exclaimed, "Bloody hell! You really do walk like a penguin!"
I looked at her, slightly irked at her excitement. Like she'd discovered Anne Boleyn had 6 fingers and a 3rd breast (really, she did!).
"But I mean it's really pronounced isn't it?!" she continued. And then the real beauty, "Did you carry your children on your feet when they were small?!" Little waddling dance to illustrate concept followed.
And the reason I tell you all this is not to make friend out to be tactless git - I'd like to think she was embarrassed and covered it up with humour.
I think perhaps the reason that she felt able to go on like that (and on and on she did go I'm afraid), was that she recognised that I am now so comfortable and confident in my skin that it doesn't matter that I have feet that stick out. And I can laugh about it now. And even better, it makes a cracking little anecdote to boot!
So confidence issues come, but they also go! And that is wonderful news. For all of us.
Penguins do not even have feet that stick out because if they did, their eggs would roll away! Even ducks have straight feet - splayed but on straight. Pity it's taken me till tonight to realise that one, eh!
Saturday, 15 March 2008
I like these meme things - they give me something to think about. I like them so much I even tag myself! (Oh dear. Is that very sad?!) Anyway, thank you to Clairesgarden for this one...
8 things I'm passionate about
1. Writing and books, books and writing. (Is that 2 things?) I love writing about books, and books about writing, and writing about everything and everything about books.
2. Music. I've grown up with a musician father, and played around with my guitar since I was 8 or so. (8! Ha ha!). I love most music, and can't live without listening to it, and/or making it (though we'll take making in its loosest sense, please.) I sing loudly when no one is home, and if it's just me and the girls, then the little one and I sing loudly, about everything and nothing. I was a very annoying child for that reason alone! I say most because I have issues with full on trad jazz (like postmodern poetry - I'm too thick to get it obviously) and er, gangsta rap does my head in, and some classical... like the really heavy Liszt concertos you need 24 fingers to play properly.
3. My children. Not that I'd tell them this of course!
4. Horses. Addicted. Completely hooked, and always have been. Since the very first time I saw one. I had to wait till I was 37 to take up riding. I am going to ride till I die.
5. Teaching. I love the feeling you get when someone else feels the passion you do for a subject, or rather, gets infected by enthusiasm! I love seeing the lights go on in students from 4 to 94, and the best part of all, is when a student suddenly realises that they can do something that they never believed they could before, and they begin to grow in confidence. I really love that bit!
6. Questions and answers. I love not knowing, trying to find out, and finding out. A life without questions must be intolerably boring. I love helping people to find out stuff that I might now too.
7. The internet. But then thinking about this, I only say the internet because it's so wonderful for being in touch with people - so perhaps what I really mean is I am passionate about people?! And making friends, and talking, and sharing ideas.
8. Living. Being alive. Something I used to take for granted. Oh well. Better late than never.
8 things I want to do before I die
1. Own a horse and learn to ride bareback and bridle-less - you know - have one of those natural horsemanship relationships with my equine friend.
2. Live in Spain again.
3. Re-visit Canada, to the place where I was born and grew up - to stand on the shores of Miracle Beach and play with the starfish... and see all my family.
4. Ski. Lots more skiing please.
5. Visit Tibet, and the far east. Might even find a cure for my cancer there... now there's a thought.
6. Learn to practice Yoga and meditation properly (again, prolonging my life in mind).
7. Visit South America, and ride horses there.
8. Publish lots of books, starting with the novel I am writing at the moment.
8 things I say often
1. Oh for f**k's sake!
3. Don't argue with me (to the kids)
5. Oh good lord (when no' 1 is not permitted for whatever reason)
6. I'll do that just as soon as...
7. I AM CALM!
8 books I've read recently
8 songs I could listen to over and over again
1. Angelou by Van Morrison
2. Asi me Siento by Maktub Andalucia
3. 9 crimes by Damien Rice
4. Hallelujah by Jeff Buckley
5. Barber - Adagio for Strings
6. Si Tu No Estas by Rosana
7. This Woman's Work by Kate Bush
8. No Woman No Cry by Bob Marley
8 things that attract me to my best friends
1. Sense of humour
3. Willingness to forgive me my fads and whims when I go on endlessly about crap they don't care about (like horses, and writing!)
4. Their individual quirks and foibles that make us who we are
5. Their ability to get me back on my feet when I am at my lowest ebb (this one's been ridiculously important since Christmas for some strange reason ha ha!)
6. Shared interests
7. Shared issues/experiences
8. That they are willing to be my friend!
8 people I tag
Please tag yourself and tell me about it! There's too many people to tag and so little time!
It's been a good day. I have been out and about, driven the car, not needed any morphine, and only taken 2 anti-nausea pills!
And no tears!
Friday, 14 March 2008
Right. Went swimming and did 10 whole lengths. Good good. I am pleased. For the first time since this all began, I swam, and jacuzzied without going all grey and strange and throwing up in the changing rooms! Most excellent. Also, everyone who goes on a Friday (mostly OAPs doing aqua aerobics) knows about the tumour and all that now, so lots of lovely people ask me how I am, and tell me one day I'll be just as wrinkly as they are! I'm not going to say I can't wait, because I am learning to live every day as it comes, but it's definitely a goal to still be swimming (and riding) at their age! I took my eldest daughter with me and embarrassed her suitably in the changing rooms as she ran off into a cubicle, and the rest of us 'biddies' bared all! *huge grins at the everyone's looking at my bum attitude of the 15 yr old*
Afterwards I had my first ever manicure. It was very nice - hand massage and then all shaped beautiful, capped off by a French Polish. Only I'm obviously not cut out for manicures because by the time I'd got the money out of my purse to pay for it, I'd all but wrecked the polish! Ho hum.
And then... in this exciting off work sick lifestyle of the cancer patient, I went for lunch with my mother in law. We had Italian - ciabatta chicken club sandwich for me which luckily did not set of the gallstones, followed by a caramelised fruit and marscapone cream/Amaretto dessert - come to think of it, I should have taken a pic but ate it before I remembered! Conversation was good, food was excellent, and all in all, it was bloody good to get out.
And then I phoned the research office to say, "Excuse me, but I like told you nearly 2 months ago that I've got lung cancer and need to intercollate or whatever you call it, and no b**** has bothered to call me back?!" Hopefully I will hear something soon - and no I didn't really swear at them, and yes, I was very polite. Still going to keep writing the book though - she says, not having written a blinkin' word for what feels like forever...
What else? Erm... Oh YES! I know! Couldn't ride this week at all, because the chemo didn't wear off till today (and still a bit throwy-uppy, though the pain seems to be much diminished (?!), so I have been like totally decadent dude, and booked 2 lessons, and a hack, for next week! Every other day! Flat work on Monday, Jumping on Wednesday, and hacking on Friday! Soooo excited! The only horse fix I've had in the last two weeks was making a friend (yes, making them!), take me to my old riding school so I could hug (yes hug) Molly the mare (who is very cuddly and doesn't try to bite or knock your head off your shoulders with her own massive head). I came home in the car with the biggest grin on my face, that lasted the entire evening. You see - horses are good for me!
I need a horse - do you hear me mrs universe? A nice little share - say three days a week and local would be spot on...
And given that I want to get old one day, here's some "old" facts nicked from Horse & Rider Magazine (April 08 issue) - hope they don't sue me! (Can you be sued for copyright for facts?!)
Oldest horse to win the Grand National:
Peter Simple in 1853 aged 15. (Average lifespan of a horse is 20 to 30 years, and over 15 years they are considered Veterans (which changes insurance policies/cover and all that).
A stallion in France died in 1919 aged 54. (So that's like really old!)
Old Billy (a part bred Cleveland Bay) lived till he was 62. (And even older - like a human making it their 140s!)
Oldest Riding School:
The Spanish Riding School of Vienna (founded 1572). (These horses and riders really rock!)
Oldest Rider to win Badminton:
Chris Bartle, aged 46 in 1998, riding Word Perfect II. (So I have erm... 8 years to get good enough. Hmm.)
Oldest Horse to win Badminton:
Horton Point (ridden by Mark Todd in 1994) was aged 16. (Again, not bad for an old man, eh!)
Oldest Chalk Figure:
Uffington White Horse on the Berkshire Downs thought to be around 3,000 years old.
Oldest horse to compete in a race:
Creggmore Boy, at Cartmel races 1962, aged 22. (I ride Henry, and he's 19 I think, and he goes like the wind... so I'm not madly surprised at this one!)
Oldest horse to give birth:
a 42 yr old Australian mare. (Now that's just ridiculous!)
Oldest female Olympic competitor:
A dressage rider called Lorraine Johnson, rode in 1972 Munich Olympics, aged 70. (Oh goody! My favourite fact! I have loads of time to make it!!!)
If you have 5 minutes, you could do worse than to have a look at this video on The Secret
This link was sent to me by my auntie Marion in BC, and it is lovely. I've downloaded it to my desk top and am going to watch it everyday, to remind me that life is precious and good, and starts anew today - everyday!!!
Wishing you all a fabulous day, weekend, and life :)
Posted by hesitant scribe at 4:59 pm
Thursday, 13 March 2008
I am up and dressed and it isn't even 9 am yet - hurrah! Still feeling a tad the worse for wear, but in comparison to earlier this week, I am in the peak of physical fitness and comfort! I can even swallow a cup of normal tea without retching, and that has got to be worth something!
Anyway... I saw the oncologist yesterday. I gave him a hug as advised in one of my healing books. It felt good. I felt better towards him - more of a person trying to help another person rather than some doc in an office looking at some patient's file.
The meeting was a long one. Here is what we know (if you're interested in the medical nitty gritty...)
The tumour is called a pancoast tumour in the apex of my left lung, and is Non Small Cell Lung Cancer (NSCLC for short), staged at IIIA, which means it has spread to the lymph nodes in the chest on the left side.
It has not shrunk in response to 2 cycles of chemotherapy using Cisplatin and Vinorelbine, and is unlikely to respond to a further 2 cycles. But I've already had the 3rd, and I've decided to have the final cycle after Easter.
My oncologist wanted to sack the chemo for radio immediately, but I am going to Centre Parcs with my family (the Willow Foundation have arranged everything, more on them in a minute) and I feel that I, no WE, need this break, together, as a family, and at a time when I am well enough to do things with them. Doc says he's happy to go with this plan, and this way, we get to see if the final 2 cycles will have any effect - they might, mightn't they?!
So what we have at present is what we call 'stable disease'. It isn't growing or spreading, and it isn't shrinking either. After chemo, and a week's break, we start radiotherapy - 20 hits, one a day, at a hospital an hour or so away. And that can only happen once.
After radio, if the tumour is still there, we watch and wait. The overall survival rate after 5 years for patients who have chemo + radio + surgery, is "not significantly better" than for those who have chemo + radio. Doc says if I make it to 5 years then the chance are I will live out my life. 25 % of patients make it to 5 years, so I've got a 1 in 4 chance. Given that cancer is a 1 and 3, and I won on those odds, maybe I'll be lucky again, hey!
It's a lot to take in. Cancer is a strange beast. There are so many factors at play, and the main one seems to be mental attitude. I threw the I Ching yesterday, and it said I had to be calmly resolute, that fighting the disease with violence was useless - I had to resist it with passive determination, with love. So I'm going to try to learn to do just that.
A quick note on The Willow Foundation
This organisation arranged special days for young people (between 18-40) with a life threatening illness. I was given their website address from another patient with lung cancer, and after filling in a form they rang me and arranged everything for me and my family to go to Centre Parcs - something we never could have afforded, especially not now. If you know of anyone in my position (God I hope you don't!) but if you do, please pass on the website to them. They are a wonderful organisation doing wonderful work, something I'd like to do
So this blog will be interesting over the next few years, eh. Soon the treatment will be over and life will continue, and I'll have to work out what I'm going to do, and how I'm going to cope. There's so much work to be done on myself... getting fit again, staying healthy, meditating, yoga, etc., etc., and writing. Lots of writing and getting published.
And lots of hope. Yes. Lots and lots of lovely, luscious hopefulness.
Posted by hesitant scribe at 8:51 am
Tuesday, 11 March 2008
Firstly, thank you for your emails and comments through what has been the most horrendous time so far. Somewhere between the constant pain, nausea, and lack of sleep, I really did begin to wonder what the hell was going to happen to me. Blogging that last entry took every last bit of strength, and afterwards I collapsed again, unable to move the laptop away. At one point I had visions of having to dictate to someone, to post for me… Lisa is unable to blog today… Like Julie Darling who died of cancer in the end. Thoughts too horrid to contemplate.
But things pass. And thankfully that awful despair, and feelings of loss of control, have passed.
Julie came over yesterday morning and quite literally dragged me back from the brink. She rang the hospital and arranged a meeting with the cancer nurse, and then took me up there for some answers. Basically the tumour hasn't shrunk, but then it hasn't grown either. Or spread. So while half of me feels that all this horrid chemo has been a waste of time, the other half says, well, we're no worse off than we were before.
A new plan of action is needed.
We got the pain relief sorted out, so that is one thing. I knew the tumour hadn't shrunk because I'm still in so much pain. Now I have morphine so I can get through the night, and that has made a huge difference. I haven't even taken it yet, but just having it there seemed to do the trick!
I have an awful feeling that I need to make some huge decisions about my life before I'm going to get better. I've been having some pretty weird dreams in which I’m trying to climb up vertical roads, hills, and in one, a lecture theatre?! I’m pleased to say that I have, in every instance so far, made it over whatever obstacles have been in the way, but it’s taken the entire night usually.
So. What next. The oncologist tomorrow and a new plan of action. Try to keep going. A swim perhaps before Friday, and maybe even a riding lesson (okay, so might need a bit of a miracle there but who knows…).
P.S.I am hoping that in all of this I will become a better person, and find something useful to do with the rest of my life, but I don’t mind telling you, my sense of humour is being severely tested here, and if any of those gods I don’t believe in are reading this, I could really use a bit of help right now! Half an hour without retching would be a good place to start.
Posted by hesitant scribe at 10:12 am
Sunday, 9 March 2008
I'm on the sofa. I've been here since what feels like forever - been a long a couple of days. The drugs to combat nausea have caused all manner of symptoms from constipation to a fatigue that would floor an elephant. Actually i feel like an elephant is sitting on my head (and chest, and torso...).
Also, been very depressed. I keep crying all the time. I just don't want to die. I know we all die, but I don't want to die any time soon, you know. The pain is so hard to deal with too, and I haven't slept in a week, despite being totally wiped out. Last night I spent the night being chased by vampires while in a cold sweat - too much! I've decided to come off all the pills and see if my body has a better chance of recovering...
I've also decided that I need to take more charge of my own healing. The docs reviewed 16 cases in an hour last week, and mine was just one of them, so guess what... no news. Frankly it just isn't good enough. i feel very let down. I haven't seen a doc since jan and they're filling me with all this poison... I want some answers and as soon as i can get off this sofa, I'm going to demand some!
Posted by hesitant scribe at 1:49 pm
Thursday, 6 March 2008
Sorry folks, but totally fed up today. It's just such a long haul, this cancer business.
Today's miserable state is probably due to a culmination of many little things; like not getting a full night's sleep, being constipated from too much codeine last week and having tummy ache, being full of toxic chemo chemicals, being inoperable still or facing surgery, facing radiotherapy after having met people in hospital with the most horrendous side-effects, feeling so dog-tired I wouldn't have thought it possible... the list continues.
I JUST WANT MY LIFE BACK!
I was also hoping for a miracle shrinkage to have occurred, only it doesn't seem to have happened, does it? I mean they can't even see a difference until it gets measured properly. But on the bright side, if the chemo can only kill cells that are multiplying, and the cells are only multiplying really slowly, then there isn't going to be a massive difference after only two cycles is there? And at least it isn't bigger. Or anywhere else, for that matter.
So I'm thinking, okay... today I can be down and miserable, and tomorrow it's a pick myself back up time, and stay positive. I so wanted to ride today, or just get out of the house even... what am I saying?! I just wanted to get off the bloody sofa for more than half an hour!!!
BUT - I will get through this.
It's just so bloody hard at times, but then what did I expect? (Wasn't I like this at the same time last cycle? Maybe the first week is depressed week or something!)
My dad brought me a book called Love, Medicine & Miracles, by Bernie S. Siegal, so am going to read that through, and keep on hammering away it.
Cancer is such a bugger isn't it.
Posted by hesitant scribe at 4:43 pm
Wednesday, 5 March 2008
It's good to be home.
The first thing I do is strip off and get everything in the washing machine, as it all reeks of hospital. I can't describe the smell, and you certainly don't notice it while on the ward, but once home it seems very strong... disinfectanty kind of affair.
The second thing I do is hit the sofa, under a blanket and sleep for ages, until I feel well enough to get in the bath with loads of lavender.
This last visit was quite a peaceful affair. I was put in the same bay as before, but there were only two other women in with me this time. One was a newbie, and the other started her journey in July last year. The newbie was a lovely lady in her 60s, and was so calm she put me to shame! I was in tears my first visit and was shaking so badly I could hardly stand! And she was all on her own. So impressed! The other lady was my age, and had been in for a fortnight because radiotherapy had burnt her breast so badly she had a massive infection. She'd packed to go home 4 times and was gutted at being there another night. She said they'd lost 3 patients last week. That's the worst thing for me about being a cancer patient - it's seeing all these other people going through hell, and even worse, THE WORST, dying.
On a lighter note (?!) the newbie had her cannular put in by a student, and I really felt for them both when the veins popped three times and a more senior nurse had to intervene. Luckily for me, the more senior staff do mine, as my veins are tiny and tend to run away when they see anything pointy coming! The lady remained a lady throughout and even tried to cover her winces. I, meanwhile, am effing and blinding as the cannular goes in smoothly and without a hitch - and you should hear me when they cock it up!
We three ladies chatted for a while, but unfortunately (or perhaps fortunately for them with my inane banter!), I went down hill quite fast this time. Once the old Cisplatin started pumping through, I was sick as a dog. The new driver for anti-nausea didn't work as I can't have the sedative (makes me nuts for a week), so I had to have a deep intramuscular injection with more anti-nauseas. Bleugh! Sick bowls at the end of the bed, curled up all foetal, the works. The injection hurt like hell too - "Curl those toes!" said the nurse, but it worked within 15 mins so I tried to be as gracious as I could!
When it came to the next lot though, I was begging for tablets form!
All the staff this visit were superb. The nurse on night duty this time was particularly wonderful - offering us tea in the middle of the night when waking us up for meds, running over as soon as the IVs started beeping, and unplugging us the instant the last bag of fluids was done. I could have kissed her, really. Don't know where the dragon got to, but did hear of a few more complaints...
So. Three down, one to go. And I'm still here. Livestrong!
The Lung nurse just rang me to say there's still no conclusive news from my CT scan because no one's measured it yet. Am slightly peeved about that, but it doesn't appear to have grown any. She said they can't tell if it's moved away from the nerves yet (which would make me operable), and apologised profusely. She said I sounded a bit down! I said, I'm just knackered and nauseas and a bit miffed that there's no news - as you would be!
The thought of surgery terrifies me. Is that normal?!
Posted by hesitant scribe at 5:20 pm
Monday, 3 March 2008
Will be absent for a couple of days as cycle 3 begins in a couple of hours. Just packing my bags, making lunch and dinner, and sticking lots of writing paper in the bags in the hope that I will do some work this time.
The pain is really quite horrendous at the moment, and if the last two cycles are anything to go by, the pain will start to disappear half way through the bag of Cisplatin, so looking forward to another opportunity to hammer this little blighter! The nausea doesn't tend to kick in until the following morning, but hey ho. There's always a price, eh!
Normal service, whatever that is, shall be resumed by the painfree but vomiting one asap!
Thanks for all your support - it really does make all the difference!
Mother's day was lovely. Little'un and I got a camera each and took lots of pics outdoors. Enjoy. (Think of them as an interlude!)
Saturday, 1 March 2008
Today has been fairly uneventful; bit of grocery shopping, visit to the folks, lots of shoulder pain but not too much nausea. It should be very exciting really, given that Monday is Chemo day again (my, doesn't 3 weeks come around fast!). Incidentally, no news on the CT Scan because they didn't think on to measure the bloody tumour! Brilliant. Not sure which genius thought the news was that there is a tumour, when in fact the news should have been smaller/bigger/still the same. So now we have to wait until Wednesday until another X-Ray doc can measure the thing and compare it with the last images we took.
Indeed, so boring was the day that we decided to spice it up in two ways;
Firstly, we bought a Dragon Fruit. It looks completely beautiful, but equally inedible. I think buying one to eat was a very brave thing to do!
It gets even more interesting when you cut it in half...
I know! It looks like facial scrub inside! Apparently, you dig the white inner flesh out with a spoon. It is quite firm, like a melon, but tastes very much like a lychee - and quite sweet. It isn't a strong flavour, by any standards, so even the hubby (who likes bland and/or sweet) liked it. He had one half, and Bigg'un had the other. Little'un is with her gran so she's missed out I'm afraid.
Secondly, as if the excitement of trying new fruit wasn't enough, we then went out to find a companion for the bunny, as the two guinea pigs she kept as pets died of old age.
This is Thumper;
And here is Benny, her new
We've been running out to the hutch every five minutes to make sure Thumper hasn't squashed him, but she's either been grooming him, or upstairs in her 'bedroom' minding her own business, so I think it's going to be just fine! Little'un will be so excited!