It's a biggie tomorrow - CT Scan first thing in the morning, and a rather important one at that because it's when we find out what the Tarceva has been doing; and have the tumours shrunked/reduced/disappeared altogether(?!!!)/remained stable/(almost the one we're hoping for actually). I won't know the results for ages though - don't see my oncologist until JAN 19th - be positive I tell myself, the worst is overm now we just live! But really live, you know, no f**king about and wasting time- there's writing to be done, or rather extracting it from my brain's hard drive where I've been drafting/redrafting and shaping the pieces of the quilt that are to be 'stitched' together into a novel of sorts - and I just found out that Las Cartas has been accepte somewhere for a new mag's first edition (will let you know more as I find out!) - how exciting! :) What else? Oh yeah, the Little' Un had her first canter ("without screaming, mummy!") today, so it was a celbratory day - also - the new pain meds dosagw is lasting from 8 till 5.30 now so i'm very optimistic that with a few more tweaks we can eradicate it altogether and then i'll have no more excuses for not writing more!
Monday, 29 December 2008
Saturday, 27 December 2008
...bladder attacks for moi on the old 25th, I'm afraid! It was a fab day til then though, and we learn to appreciate those golden moments such as having a few pain free moments! We went to my parent-in-laws' house for a traditional Christmas dinner (with my parents too). You see I knew I should've ignored the trimmings (even though I kinda thought I had - no cream - no chipolatas, no turkey skin all crisp and inviting - no desert, well, okay, yes desert, but only a little tiny bit, but* but* but* but* I did eate a lot more than I have in a long time, so perhaps that's why y gallbladder decided to cock up and otherwise perfect day.
We got home about 6ish after i'd had a couple of hours of mild tummy cramps, but then I had a nap, and woke up half an hour later unable to breath hardly with what felt like someone taking a chainsaw to my middle - it lasted hours for f***sake, so hubby rang the doc and found a neighbour to take care of Little'Un, and we waited while I screamed and the doc arrived and took a look at me, and said something like, "Oh yes, Gallbladder - very painful. But I can't give her any diamorphine, I can only preswcribe it and the disrict nurse will have to come to administer it." Or words to that effect, and I said, " Oh my, what a shame!" Or words to that effect. And the doc had taken 2 EFFING HOURS TO GET TO ME and the nurse took FOREFFINGEVER,so that I my screaming had scared the gallstones into submission (along with half the street I think) and she still hadfn't arrived with my lovely syringe full of pain relief!!!
Total crap. And now it's Boxing Day and late and I'm trying to type this as fast as I can before the pain revisits me for the bedtime slot!
ARGH! Hope y'all had a good one - much love,
Tuesday, 23 December 2008
I am sooo excited! It's Christmas Eve tomorrow... I love Christmas Eve, when all the house is lovely and tidy, the shopping done, and anything that hasn't been done will just have to go whistle for it! And then it's time to settle down by the tree, and wrap the kids' presents up. Watch telly and wait for Santa!
And for anyone who missed it last year:
'Twas the night before Christmas, when all through the house
Saturday, 20 December 2008
Golly! 2 posts in 2 days - you'll be sending me a medal for this!!! I'm still feeling crappy though, with nausea, and pain, though the oxynorm (new extra strength, no less) does work eventually - looking at the symptoms I've got - this looks very much like pancreatitis but I don't know what they can do about it. The tumour they found was 3.5cm (and even though I believe the Tarceva has started to shrink it), and my pancreas is not impressed with this at all! And I'm shrinking away too. I have to check every single label on food before I can eat anything - due to the fat content... especially the saturates - so if anyone out there wants to lose weight, just try cutting down on your fat intake!!! I've gone down to 8st 7lbs... a steady descent from the 11st 5oz I had gone up to during chemotherapy last winter! And it isn't difficult when you know it's going to really hurt if you have too much, like REALLY!!!
This morning woke up to the little one shouting me - she has caught one of these horrid tummy bugs, and of course it would be when hubby is away so luckily my mummy has been here all day taking care of both of us - and little one is recovering fast now that she's had some (more) antibiotics, and has been out for a walk to get some fresh air with nanna :)
It's 3.30 and the abdominal pain is just beginning to kick in again, so I'll leave this post here...
Thank yous go to S for the lovely Bath Spa thingy she brought me, and my eldest child who has been an absolute Godsend this past week or so.
We haven't sent any Christmas Cards this year - as hubby is giving the money we would have spent on them to the Hospice where I am treated soooo well (and they aren't funded either, which is a disgrace). Am working on an 'e-card' to send but goodness only knows when I'll get that finished!
Hope you're all happy and organised for Chrimbo - and looking forward to the festivities - I for one can't wait!
Posted by hesitant scribe at 3:39 pm
Friday, 19 December 2008
No Blogging... blame Bramble! (NO that's not patience you can see, it's an illusion!)
I have been trying to write this post for what feels like weeks, but is only a week and a half! Tuesday morning (after the last blog post) I rode like a total muppet - no really, I did :( - so I've asked about some lessons on the lunge to sort my position out but especially my hands. After riding I saw my doc at the Hospice, and she doubled all my meds again, however, Tuesday pm, things started to get bad as early as 1 in the afternoon. I've basically had another one of those weeks from hell, with abdominal pain that was verging on that of pancreatitis or a gallbladder attack. Like cripplingly severe - cry your eyes out kind of pain/can't think/can't talk/can't do anything but rock back and forth and howl. (My poor poor family!) By Saturday morning I was in such a mess I phoned the hospice to speak to my palliative care specialist, and thank God, she was there that weekend - so I got catheterised (yeuck!), and examined (all okay), and the meds all upped again. Massively.
At last I got a good night's sleep (first one in over a week), and awoke feeling fantastic, so I ran downstairs, and rang my friend to tell her I could take the girls riding. I was horrified when she said very sensibly I might add, that she would prefer it if I didn't drive just yet, given how much opiate painkillers I am now taking, and I foolishly got all upset about it. You see, my body has been a right old mess admittedly, but my mind is clear and my faculties have not been affected (honestly!). I tried to explain that I would only drive if I felt 100% safe in doing so, but the poor woman stuck to her guns, and so I said I'd meet her there. Of course as soon as I put the phone down, a wave of dizziness and nausea hit me from out of nowhere, and I had to call her back (in disgrace) to ask if she could take me and my little 'un after all, because I really couldn't have driven for all the laxatives in Boots!
I got very emotionally upset about all of that because as I keep saying (like some kind of loony...) MY HEAD IS FINE!!! I am not drunk and stumbling around thinking I am walking in a straight line, or can do x, y, or z when I clearly cannot.
But long term illness gets you that way. People have to care for you/see you at your worst, when you're throwing up or feel so bad you can't think straight because of the pain, and I find I am constantly trying to defend my mental capacities/judgemental ability. And no one has treated me like a child either, so it's not like I have reason to feel like this (and anyway that was last week, and I feel fine now!). Apart from when people phone me and say stupid bloody things like, "Have you taken your painkillers?!" Er, no. I thought I'd just leave them and roll up into a ball for the rest of the day! Of course I've taken my effing meds!!!
Monday was better and I was going to blog, but then I had some unexpected visitors (to be fair, one of them was written on the calendar in the kitchen, but I'd forgotten!), and got nothing done, but it was lovely to see K, and my long lost bosom buddy L.
Tuesday I had a lunge lesson, and improved my position and hands somewhat. I did drive, but I asked my dad to come with me, so he could take over if I was too tired at the end of the lesson to drive home. Didn't blog.
At last - the muppet sits up tall!!!
Wednesday was go to get more Tarceva day. No blogging, but lots of face-booking ( it's easier to write one line or so, than a whole blog post).
Yesterday it was back to excruciating pain again, but it turned out to be a load of crap - quite literally!!! After about 3 hours on the loo, my legs had gone dead, but my stomach felt better.
Today, I receive my order of A&W Root Beer. And it amazes me how a smell and/or a flavour can whisk us back in time over 3o years. I've been thinking about my childhood a lot recently, mainly due to being in contact with my cousins, who were more like sisters and a brother to me, as I grew up with them in BC until I was nearly 7. And they've been posting cute pics of us all when we were kids.
Possibly the bestest drink in the world - I can't think why the English dislike it so much!!!
I've done all my Christmas shopping on-line - thank God for the Internet!!! And the tree is done - thanks to little 'un and NeeNee, and Hubby for agreeing to me getting a real one for a change - the house is already full of pine needles but I love it! YAY for the smell of a real tree!!! This is gonna be the best Christmas so far!!!
The Tree 2008...
Righto - will not leave it so long next time. Promise.
Posted by hesitant scribe at 2:08 pm
Monday, 8 December 2008
Bramble Wonders What's Going On With All The White Glistening Stuff!
Saturday turned into a very successful shopping spree as Derby House (tack shop) sent me an email advertising a 20% discount off everything for that weekend only! So off the little oneand I went to Grandma's house, and then to "a surprise" place. When we got there she said, "Is it a wood shop?!" but then she went inside and saw the pictures of horses everywhere and sqealed with delight!
She got her Christmas presents early (as you can see in pic below); jodhpur boots, half chaps, and a plush black velvet riding hat to go with her new jodhpurs and riding gloves I got her on Friday after my lesson! You've never seen a child so grateful - you'd have thought we'd given her a million quid!
Despite the frost we took her to her group lesson on Sunday morning -all kitted out and grinning from ear to ear! It was soooo cold that hardly any kids had turned up (to volunteer!), so I ended up being my little one's leader. While hubby froze on the sidelines with a camera, I was sweating cobs after the first trot round the indoor school, and peeling off layers by the second. Great fun - I think I'll help out more often! (That was how I ended up being trained as an assistant gymnastics coach though!)
And today I've had loads of visitors so haven' done half the things I was going to, but cares?! There's a whole week ahead! Carpe Diem and all that!
Saturday, 6 December 2008
Poor old Siobhan. Always being accused of being lazy for not moving off fast enough in the walk, or taking an age to trot, or only doing a couple of strides of canter and then stopping again... when the whole time
IT WAS MY FAULT!!!
When I arrived for my lesson yesterday, S (my instructor) took one look at me and said, "Are you sure you're okay to ride today?!" As usual I said of course I was, but she wasn't convinced at all, and I had to admit that perhaps jumping wasn't such a clever idea! The truth was I'd been awake (again) since 5am with stomach pains (now known to be simply constipation!), taken my double dose of oral opiates, managed to go to the loo eventually (but very uncomfortably), and had been deliberating as to whether or not I should cancel the lesson (but since I cancelled Wed, I knew I had to make an effort for my own sake). So I pulled on my jodhpurs, downed some anti-nausea pills, and set off anyway. As you do.
I promised S that I'd tell her immediately if I wasn't up to the job, and asked her if we could work on some things I'd been reading about, like knowing which leg is moving and when. Turned out to be one of those cracking lessons where it all starts to come together and make sense!
It isn't easy to work out which of the horse's legs moves first, or last come to think of it. Siobhan is often sluggish in the school too so that ought to have made it easier, but each time we set off in walk, and S asked me which leg moved first I looked at her with a blank expression. I was trying to think the answer when you have to feel for it instead. It got even more complicated when we moved off into trot, and I had to workout/feel which diagonal pair moved first. I struggled to 'listen' with my buttocks, but still didn't trust them, so when a fore-leg seemed to move first alone, in trot, I used my head and got it wrong - it was a lesson in following your instincts - to really see what is rather than what you think something should be!
After a while my brain (and buttocks) were frazzled, so we moved on to looking at the 'aids' in more advanced detail. In riding, the natural aids are voice, legs, hands, and seat (that is, the things you use to ask the horse to do something). The weird thing is you have to learn one way when you begin, and then as you progress, you learn more advanced methods to do the same thing! So the aid for 'walk on' becomes a squeeze with one foot and then the other (once your buttocks know which sequence the horse's legs are moving in), and trot becomes a squeeze with both legs (as opposed to it all being a squeeze with both legs!) Siobhan became a different horse in an instant, as though she said to me, "Aha! Now I understand what you want!" She walked off with a spring in her step, and moved into trot instantly, rather than ignoring my (previously unclear) signals.
And canter too! Wow!!! S moved my feet into position to ask for canter and a light went on - "Oh!" I said, "It goes that high up!" After a bit of work on co-ordination - trying to raise one foot up towards my own buttocks without losing a stirrup was hard - while keeping the other foot on the girth and squeezing inwards at the same time - I kept forgetting to move the other foot back in time, but Siobhan became a Ferrari! She was clearly pleased with me! Instead of waiting for her to canter - she turned her ears to me, saying, "I'm ready!" and the minute I squeezed the girth she cantered, and kept it going too!
So to all of you who think you just sit there, and kick the horse, and pull on the reins - it's just so not like that! Instead you need masses of co-ordination and a horse with tons of patience.
Spending Money again!
I finished the lesson with a feeling of achievement and deep satisfaction, and looked much better than I did before I started, so went to the tack shop and bought the little one some jodhpurs and riding gloves for Christmas, much to the bemusement of hubby. (He's lucky, I nearly bought her a pony to go with them ha ha!)
Still feeling Betterer and Writing - hurrah
The pain meds are working well, and I'm less woozy from the additional morphine-like stuff. If I can get my bottom sorted out, I'd be on cloud 10! Still doing my evening meditation cd, and repeating to myself that I am healthy and strong! I refuse to give up on my life! Just want to be healthy again... little else matters... also writing again and should have the next bit done by early next week!
Wednesday, 3 December 2008
Saw the doc on Tuesday - I could've done with seeing her at the beginning of last week to be honest, especially when she said, "Well, we'll just up your medication."! I had been terrified she might need to put me on something different altogether, something like methadone, which involves a 5 day admission to the hospice, but we're nowhere near the upper limits for my oxycodone - what a relief!
Yesterday morning I took my double dose of liquid oxynorm (instant hit stuff) and began to feel comfortable again very quickly, however when combined with my double dose of oxycontin (slow release 12 hourly stuff), I ended up a tad dizzy, nauseous, and ever so slightly out of my tree! Had to re-arrange my riding lesson for Friday, but today it's all been good (apart from the nausea!), so should be fine and dandy tomorrow. It is fabulous to be pain free after so much agony for so long!
I've come across a couple of inspirational stories/vid clips I thought I'd share with you - who said animals are dumb creatures?!!! And who said we cannot form relationships on any levels other than master/follower or predator/prey?! Take a look at these!
I did some research on this one too, as I would have been devastated had it been faked! The original story in the press can be found here. I dare you not to cry!
Also found this with more loving lions;
Plus this - which I cried my eyes out over when I first watched it! It's not just the fab relationship with the horsie either but the song lyrics were/are so relevant.
The song is called, "Live Like You Were Dying" by Tim McGraw
He said I was in my early forties, with a lot of life before me
And one moment came that stopped me on a dime
I spent most of the next days, looking at the x-rays
Talking bout' the options and talking bout' sweet times.
I asked him when it sank in, that this might really be the real end
How's it hit 'cha when you get that kind of news?
Man what did ya do?
I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin'
And he said some day I hope you get the chance
To live like you were dyin'
He said I was finally the husband, that most the time I wasn't
And I became a friend, a friend would like to have
And all of a sudden goin' fishin, wasn't such an imposition
And I went three times that year I lost my dad
Well I finally read the good book, and I took a good long hard look
At what I'd do if I could do it all again
I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Shu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin'
And he said some day I hope you get the chance
To live like you were dyin'
Like tomorrow was the end
And ya got eternity to think about what to do with it
What should you do with it
What can I do with it
What would I do with it
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And man I loved deeper
And I spoke sweeter
And I watched an eagle as it was flyin'
And he said some day I hope you get the chance
To live like you were dyin'
To live like you were dyin' (4x)
Sunday, 30 November 2008
One thing I don't talk too much about is the pain. One of the tumours is in the apex of the left lung and is interfering with a group of nerves called the brachial plexus. This group of nerves basically provides almost all the nervous functions of skin and muscles for the entire upper torso - meaning I get a range of pain feelings from pins & needles in the skin of my left arm/hand along the ulna and radial bones, numbness, an internal itching that cannot be scratched, burning sensations, and your basic stabbing/ache type pains. Added to that, the pancreatic tumour sits in the middle of an incredibly sensitive organ, so producing a griping pain in the midriff area.
So that's the mechanics. But what about the practicalities? I'm currently taking 75mg of Imiprimine each day, 80mg of Oxycodone (a derivative of morphine), and 150mg of Diclofenac. On top of this little lot I've been having an extra 40-50mg Oxynorm liquid over the course of the day. And this last week, the pharmacy screwed up so I didn't get my Diclofenac until a day later, by which time the pain had returned with a vengeance - then it takes days to get 'topped up' again! All these meds have left me constipated yet again.
The worse thing is when it starts in the early hours - like this morning when I woke at 5am in considerable discomfort. The two hot wheat-packs did little to settle the pain, which seemed to come from my entire stomach/midriff area, and by 6am, when I wanted to take some oxynorm, I couldn't because I have to take the Tarceva chemotherapy tabs on an empty stomach, and hour before eating or drinking. I have to take the chemo at 7, so at 6am I went downstairs to try to give hubby a bit of respite, and to put the telly on to drown out my sobbing and howling. I managed to hang on until 8 am when I downed the morning's meds, but waited another hour or so for them to kick on, having let the pain build up so much.
Luckily, it doesn't hurt when I ride, and most of the time the pain meds have been working well - but this week has been awful. If I'd been told how much pain I'd experience this year I'm not sure what I'd have done!
I love my life and am so grateful to still have it, but when the pain really kicks in and my husband and children have to watch me writhing in agony and sobbing like a baby with colic, that's when I get really scared. But I never say I want to die, I say I want to live! And I look to the day when this is all over and I can live a normal life again - sleep through the night, and go more than an hour without pain medication!
Righto - am knackered now - so gonna go get some catchup sleep!
Posted by hesitant scribe at 12:39 pm
Thursday, 27 November 2008
I'm behind on blog posts once again, but only because I've been so busy - which is a good thing, isn't it!
Last week I missed my riding lesson due to a mix up (I got there and it'd been booked for the day before), but all was not lost. I stayed around for a few hours and helped out a bit. After grooming two horses and tacking one up I was soaked through to the skin with sweat, and exhausted. After a little rest I did some yard brushing with the other girls, and then led a pony for a child's lesson - now that was interesting! Walk is fine but running alongside a trotting horse for one lap of the school was knackering, and the poor girl who was also leading had to do both canter runs because I just wouldn't have made it! I had a second brew (and a breather) before rugging up some more horses, and then I was done for and had to call it a day.
Saturday was the day of my youngest's birthday party - roller skating at the YMCA - and I was so pleased to manage to be there for the whole day! I can't tell you how good it felt after a year of missing everything/leaving early/having to be taken home in a state!
Anyway, it's been a good couple of weeks for pushing the boundaries and setting new limits. As the party was in a place where they also have a climbing wall, and as one of the mums is a climbing instructor, I even ended up doing a little climb - and before you get too excited, it was only the slabby bit, and I was shaking for about half an hour afterwards, and while I'd like to say it was the exertion, it wasn't - it was pure, unadulterated terror, followed by absolute relief. I haven't climbed in over two years.
Oh God! Am I really going to do this?!
Higher up now - over the yellow line... those 10 to 2 feet really come in handy here!
Okay - can I come down now please?
Abseiling - like riding a bike, you never forget how!
Sunday I got up early and took the little one and her friend to their riding lesson, had coffee with the other mum, then met up with some other friends in town for lunch, did some Christmas shopping, and then visited another friend on the way home! Monday I was cabbaged, on the sofa and did bugger all.
But Tuesday I had a jumping lesson - back to square one (well poles on the ground), and then back up to a foot and a half! It was a real adrenalin rush getting over the first vertical, but they say you should do something everyday that scares you. I've no idea who they are, but they have a point - a little scare really makes you feel alive.
Oh, and poor Bramble went in to be neutered. My little one has been telling everyone that, "Bramble is having his balls cut off!" and worse, asked the vet if she could have them to take home!!! I collected him in the afternoon and he was still groggy - poor thing. Had to be done though - I couldn't stand to watch him trying to reproduce with his little beany baby kitty anymore - all that howling and frustration as he strained to attach his back end to a tiny stuffed toy! And hey, no paternity suits now either. Plus, he shouldn't stray too far now. I've no idea what he makes of the whole business but seems okay considering. He can't jump down from the counter top yet (still a tad sore no doubt), but he's eating and all that again. I'm a bad bad bad kitty owner!
So Wednesday I went on a 2 hour hack and scared the living crap out of myself for a brief moment or two. Instead of the beach we went on 'the path', only the path wasn't flat but like a roller-coaster, and the first part of the path a pretty severe drop of about 3 foot (which looked like a vertical cliff from where I was sitting!). Thomas, who I was riding, was really forward that day, and instead of stepping down carefully and slowly, as I expected, he leapt off the top landing in canter and then taking off down the path at break-neck speed, clearly chasing the lead horse, and leaving my stomach back on the top of the sand dune. But after that it was fantastic - up and down the hills we went, following the path as it curled its way through the trees, ducking under low branches until we finally came out by a nursery school and all the children waved to us and shouted, "Hello horsies!" It was so good, and I even had enough left in me when we got back to take the tack off and rug him up.
After that I went to the hospital to collect more Tarceva. Then I made a serious cock-up and went to MacDonalds, and before you say anything, I paid dearly for a small chocolate milkshake, small fries and sweet chili chicken deli sandwich! By the time I got home the pain had started, and I was in tears by the time the kids came home from school. Silly silly me! Was it worth it? Not really, no.
Today I've been recovering and had yet more pains, but not the make you cry sort, just the rocking back and forth sort.
So life is good despite having cancer and being on chemo! My stamina is improving bit by bit, and though I still need to keep pushing myself more and more, I do feel as though I'm making progress.
Haven't done much writing though :( but then Rome, as they say, was not built in a day, and I had a lovely visit today with a friend who writes - and it was really inspiring to be able to talk about writing again with someone. So at least I'm thinking about the project loads, so much so that the thing is written in my head and just needs committing to paper!
Enough pointless rambling from me - I'm off to bed to listen to my healing CD!
Posted by hesitant scribe at 11:21 pm
Thursday, 20 November 2008
...some things you might like to think about before saying aloud to friends with cancer - or any serious, longstanding illness for that matter - and some alternatives...
1. On noticing how much weight your friend has lost - "OMG! You're soooo thin! Please let me in on your diet secret!"
(Try something like, "You look great - at least there's one good thing come of all this," or alternatively keep your mouth shut!
2. When seeing a friend for the first time after a diagnosis, "How long has the doctor given you to live?!"
(I can't honestly think of an alternative for this one - and it reduced me to tears.)
3. You haven't bothered to get in touch for over a year, but now need a phone number from your 'friend'. Please refrain from sending a text that reads, "Sorry I haven't been in touch, but been thinking about you. BTW have you got X's phone number?"
(Hint: FIND SOMEONE ELSE TO BOTHER!)
4. You've had a really bad day/week/month at work. By all means complain about it, but please don't say, "You're soooo lucky being off work!" because however bad work is, it is NOT as bad as waking up every morning with a life threatening illness - being stuck at home, alone, most of the time, and having to work your mental, physical, and emotional backside off just to be able to face the day! We would MUCH rather be at work, and not having to do marking is NOT lucky - it's crap.
5. You phone your friend to ask how they are, and they say,"I've been a bit down lately, and I'm struggling to say positive." Do not say,"That's okay, I'll come to see you and we can be miserable together!"
(It may seem like empathy to you, but it's the last thing your friend needs! They need positivity, and someone to help them smile again. And however bad your problems seem, unless they include someone's life being at risk, they just won't cut it.)
6. Some people are just naturally negative. These are those unlucky individuals who see the glass as, not so much half empty, as smashed to pieces. These are the people who ring you up to say, "How are you?" and then proceed to 'share' every bit of bad news they've heard that week with you. They'll start with, "God, isn't the weather horrible today?!" They'll then go on to tell you about the child who got murdered, the bomb that went off killing x number of people, and how depressing the world is. If this sounds like you,
The weather is not horrible. It is weather. Unless you are in the middle of a natural disaster, try to see the rain as rain, and grey skies as cloudy. If it's cold, put more clothes on and consider those who live in the Arctic! If it's raining, think how fresh everything will be afterwards, how well the trees will grow. If you've seen bad things on the news, don't bother telling me about it. Chances are I saw it too. Look for the good in life - the good news stories - they do exist if you're willing to look hard enough. For all the starving people, there are projects and people working to alleviate the situation (and of course we need more but the fact is, there are people who are trying to make a difference and that should furnish us with hope and good faith). There's one poor soul I know who, when you say, "Isn't it beautiful out today!" will say, "Ah yes, but the weather report said it's going to be horrible later." This same person has a heart of gold, but will complain endlessly about everything from their job, to their partner. (And no - they don't read this blog, thank god... I'd be mortified if they read this and recognised themselves!)
* * * * * * * * * * *
I hasten to add that I have been fantastically lucky with the amount of support I've had/continue to receive. And almost everyone has been very thoughtful and careful about what they say, and I wouldn't want people to be ill at ease with me, watching their every word, either. It's just that since my diagnosis I give thanks every day for my friends and family, and my life. I have realised how insignificant the 'problems' I had before actually are. Even pretty major things like divorce, losing one's job etc., pale into insignificance when life holds a loaded gun to your head, trigger cocked. Even when you learn to live with/contain the terror (and it is real terror), it can still catch you unawares, and it is very hard work (at first) to keep your thoughts positive and wholesome (it does get easier with practice though).
And I have noticed that one or two people still think that a bad day at work equals living with cancer/being on chemotherapy, or that just because I'm off work, I have all day to listen to people's so called problems. I wish I could bottle up this insight I've been blessed with, and enable these negative people to appreciate what they do have, rather than focusing on what they do not have.
And I don't mind listening to people's problems generally. I like being able to help, or just be there for people - but there are days when I can't handle it, when I need support/cheering up/to hear positive things.
Luckily I have my dad, and mu husband, and a handful of other special folk who are always positive for me, and do appreciate how lucky they are to have their health!
So - love and good health to all of you reading this, and I send you positive vibes in all you do/experience. I send you feelings of gratitude for all you do have, and the hope/belief that you will get all the things you feel you need.
Posted by hesitant scribe at 1:48 pm
Saturday, 15 November 2008
Just had to share this with you! Some brave person has filmed himself walking El Camino del Rey in El Chorro, Andalucia, Spain, so you don't have to! This is just the sort of thing my hubby loves!
Now I've been to the start of this path, and it was bad enough getting there - you have to walk along a railway bridge, and through a tunnel timing it carefully with the passing trains!
I'd rather be on a horse at full gallop on the beach to be honest!
Posted by hesitant scribe at 1:13 pm
Thursday, 13 November 2008
My eldest just turned 16 the other day. I can hardly believe where the years have gone! One minute she's this tiny babe in arms, and the next she's a grown woman (well looks like one at any rate!), all mature (most of the time), and sensible (ditto!). The little one turns 9 in a few days too - just another reminder of time is marching on. But it's great too, to see them growing up healthy and strong, and nice little people too. Just makes me feel old! It's when you realise that there are grown ups in this world who were born in the 1980s - eek!
Yesterday I went on a hack. It was a small group, just me, two OAPs, and the riding school instructor. The weather was perfect - crisp and clear blue skies, sun shining, no wind at all. We had all the usual excitement as we made our way along the road up towards the beach; a bus driver who whizzed passed and then stopped dead, freaking the horses out. The little guy I was riding (Thomas) decided the side-walk looked like the safest option and skipped up the kerb before I could stop him. Luckily there were no pedestrians. A car flew past doing about 40 mph and I only just managed to contain my middle finger. Bastards! I wish drivers would have some common sense around horses!
Once in the nature reserve though, it was all smiles from dog walkers and waves from small children! Thomas, the pony I was riding, turned out to be quite forward going, and broke into a canter as we crossed the sand dunes (I think he needed to, just to keep up with the others as he's only got little legs!). I'm a bit wary of going down hill at anything other than a slow careful walk, but Thomas insisted on showing me that it was perfectly safe to canter, let alone trot, down quite steep inclines!
The beach was perfect - tide just going out, leaving us a lovely wide strip of firm wet sand to canter along, and just before turning back to head for home, we had a little paddle in the sea. Thomas went into the water fine, but then got freaked out by the white foam at the water's edge and it took a while to get him to brave his way back onto dry land! Eventually he did a hop, skip and a jump to join the others, and then we all turned and galloped down the beach at full speed. I'd forgotten just how knackering it is though, and was so out of breath, that by half way I had to sit down, which meant we were last in our impromptu race. It took me ages to get my breath back, and I was soaked through with sweat (side effect of the tumours). But it was fantastically good exercise! To end a perfect ride out, the gentleman who was with us, told me he was celebrating 10 years clear of cancer! I thanked him for inspiring me!
I've had pain again, in the evenings, and it's been getting me down a bit. I need a good old boot up the backside to get this writing done! Luckily, I'm to re-enrol on the PhD in January, so at last have a deadline to work towards! The Novel Racers asked me if I had any plans for 2009, and I didn't know where to begin beyond, stay alive and finish my novel!
Posted by hesitant scribe at 12:59 pm
Thursday, 6 November 2008
On Friday, I had to go up to Clatterbridge Hospital to see my oncologist and collect my new meds. Tarceva is a tablet that I have to take at the same time each day, on an empty stomach, and an hour before eating. The side-effects are quite do-able compared with chemo/radio, with a skin rash of varying degrees of severity, diarrhoea, and dry eyes, but after 6 days, I haven't noticed anything at all. It's a treatment you keep taking for as long as it is working - and working can be taken to mean 'keeping the disease stable' or even 'reducing the tumour sizes'.
I have very high hopes for this treatment. It has done well in all the trials, and has only just been approved for use in Europe on Sept 21st. It is for people who have non-small cell lung cancer (NSCLC), and for whom chemotherapy has failed. I'm convinced that this is the one that's going to work, but then I have to be - there's no other options.
I've been a bit fed up with myself this week. I just don't seem to have got anything done! No writing, no hour a day on the Wii Fit (great fun so why do I need the kids to set it up before I'll get on it?! The yoga is brilliant, too, although the Wii Fit Age thing is odd - one day I was 48 (?!) and the next I was 35! Last time I was 50 so maybe I'm just too scared to get on the thing again!). Need to pull my finger out and get straight. No really, I do!
Yesterday I had a riding lesson at 9.30am. My friend, J, who has just started riding too, booked it. I cursed her as I fell out of bed, bleary eyed, and pain-killer-less, but by the time I got in the car and drove along the coast road to the stables, I was quite grateful to her. It's great to be up and about early (well, okay, so 9.30 isn't that early!).
The riding lesson was superb. I rode Henry, and was there early enough to tack him up for a change. We rode in the outside arena, and I was learning how to get his head to bend into the 20m circle we were tracing in the sand, and although I managed to get him to do that, while keeping hands and body 'still' (i.e. moving in time with Henry), my leg wasn't strong enough to stop in falling in, so our 20m circles were more like 10m shapes that have no name!
It wasn't all a disaster though. Without wanting to be too technical, I got him working in a lovely outline, and he never once tried to tank off with me! My instructor said that Henry was thinking to himself, "At last! She's sitting properly, and holding the reins properly, so I'll do exactly what I'm asked. I rode with my stirrups longer (as in dressage) which was weird at first but worked a treat.
Next week I'm going on a group hack with lots of people I've never met! It'll be 2 hours out, along the road for a short while, then onto a bridle path.
Gallops on the beach - Red Rum trained just up the coast a little!
Over the level crossing (that can be interesting, especially when lorries bumble over the lines, clanking and squeaking!), then up onto National Trust land, over the sand dunes and onto the beach for a gallop.
National Trust Red Squirrel Reserve Pinewoods (though we only canter along the bridle path bits obviously!)
Coming home we go through the pine woods, cantering up and down hills, ducking under low branches. I love it, but haven't been out for so long that I was starting to get nervous of it. That's why I'm going next week, before it's too late and I bottle out all together! Likewise with the old jumping, which I haven't done in ages either. So the week after, I'll be pairing up with Siobhan and getting to grips with some poles (starting on the ground!!!).
The Last Word is from Mock The Week!
Things You'll Never Read on Face Book
1. You have 0 friends.
2. Banksy has written on your wall.
3. Lord Lucan has updated his status.
4. Osama bin Laden is in Croydon.
5. Gordon Brown has left the group, 'Let's scrap the 10p tax band'.
Posted by hesitant scribe at 10:38 am
Thursday, 30 October 2008
Huge Bouquet from Aunty Ann
One of my younger cousins turned 21 a couple of weeks ago. In the morning she went up in a hot air balloon, in the afternoon she did a bungee jump over a ravine and a bridge swing, in the early evening she jumped out of a plane, and to cap it off, had a meal on a cruise yacht. On top of all this, she was in Australia! Of course my birthday was nowhere near as exciting, yet it was just as wonderful in other ways...
Firstly, I made it to 39, which in my position is a huge blessing. It's the first birthday in years I've not been depressed about aging! I've never been a birthday person, and tended to avoid doing anything for them. Secondly, I was overwhelmed by the amount of birthday wishes, greetings, emails, phone calls, and FB messages I received, and I feel truly blessed to have so many wonderful friends and family rooting for me.
Bramble doesn't do birthdays!
(New Earrings too! Silver Dream Catchers)
I also got some beautiful gifts: a healing quartz crystal pendant and another piece of quartz to put with my Buddha, loads of pamper stuff including the most fabulous Molton Brown smellies! I took my little one for a riding lesson so had lots of lovely horsey time too, and later hubby cooked a delicious evening meal. Also had lots of visitors and phone calls, so it was relaxed but very sociable. And thankfully I only had a few hours of pain, and didn't let it get me down (somehow!).
Out of interest, my last birthday in Spain was also wonderfully special. I wrote a little story about it that somehow ended up here.
Now I look forward to my 40th (and 50th etc.,) which I'm planning to spend with NeeNee in Mexico, with lots of horse-riding and swimming with dolphins :)
Almost as a belated birthday gift I got a call from the oncologist saying my tablets are ready for collection tomorrow morning - the gift of life I'm hoping - please keep fingers crossed (or better still visualise them working and curing me!).
Thanks to everyone who sent messages etc. You all helped to make it a wonderful day filled with hope and positivity and light. I owe you all one!
Posted by hesitant scribe at 10:19 pm
Monday, 27 October 2008
Thankfully, the clocks went back on Sunday morning, so the extra hour meant I was able to get to D's early enough. Cas and D were in the manège already, so all I had to do was pop my hat on, swallow my nerves, and hop on board. Now the last time I attempted to ride Cas, I had not a clue how to ride her, and my beginner's legs and hands sent her off all over the school in canter, complete with flying changes, the works. D had to put me on a lunge line after a couple of minutes. It was like putting a learner driver behind the wheel of a Formula 1!!!
So this time I was desperate to make a better impression, and at least no lunge line was called for! However, my 20 metre circle was more like a 15 metre quadrilateral, and as I settled a bit more and got to grips with the feel of her, we did achieve slightly rounder shapes! The main problem I have is that I need markers, and in an unfamiliar arena I have no markers. Once D made me a marker in the sand I did much better. And then we had our first canter and I made the same old same old bleedin' error of leaning forward and ever so slightly panicking at the speed (even though it isn't very fast to look at!) causing me to then pull on the reins. After a few more pointers from D I managed to have a few more canters that were nice and controlled. I think I've come a long way with my riding, as at least this time I was able to understand D's instructions and implement them! Plus, I've never ridden a horse that goes into such a lovely outline before, so riding a 'headless' horse was a new experience (you can't see an awful lot beyond the bottom of the neck when you sit up tall and straight, and look ahead to where you're going!).
A Funny Thing Happened...
Later on when I was leaving a funny thing happened. D's property has a little track that leads to the road - about 3/4 of a mile - and there's a gate at the end. As I got closer, I could see two cars were parked infront of the gate. They appeared to be devoid of any life forms, so I got out of my car and walked towards the cars, looking around to see if anyone was.... and that's when I saw him. In the passenger seat. He was lying back as far as the seat would go, and appeared to be... nope, no appeared about it, he was somewhat hastily unbuttoning his jeans! That was when I saw her too - in the driver's seat, also lying down as far as the seat would recline, and she was tackling her own buttons!!!
You know when you just don't know what to do! I mean, this is well out of my normal realm of experiences.
I waved at them over the gate, but they were oblivious. Obviously occupied with sliding tight denim down over expectant hips, they didn't look up at all. And things were hurrying along at this point. I was running out of time! So I went back to my car and honked the horn - a few short bursts should do it, I thought. Nothing. Just more and more flesh being revealed. A slight film of condensation forming on the windows. So I frantically shouted over the gate, "Yoo hoo!" (Well what else do you say?!). A face draining of all colour stared at me through the windscreen. Another one joined it. "Do you know whose car that is?" I called over, pointing at the other car. She began buttoning up again with even more haste than the unbuttoning. He looked a bit pissed off at being disturbed, if I'm honest. Eventually he pulled up his pants with a irate shake of his head. "It's mine," he said. "The plot thickens," said I.
He scuttled off into his little blue Fiesta, as she pulled up her pants, and the seat, and turned the engine over. And then off they went. Only they went quite slowly as I caught them up even after opening and closing the gate! I followed them for quite a while before they both disappeared off into a side street in the next town. I don't know - 1 o'clock in the afternoon as well!!!
All in all a cracking weekend. Even the baby horsie came to say goodbye as I drove past her in the field (taken before the Gate Incident!)
9 months old already!
(You may remember her from her baby pics on the blog last year?)
Thursday, 23 October 2008
Okay. I've had a good cry, talked to a few wonderful people, and surprisingly - even to me - have bounced back again.
Failure is not an option. I choose life, thank you very much.
Basically, the scan that showed up the 2 tumours in the liver, has also thrown up another shadow, in the pancreas this time. Hence all the abdominal pains!
Doc said they were 90% certain that all 3 sites have the same cancer, but that a biopsy was the only way to know for sure, and even then, getting a sample is not always possible. The tears started to flow at that point. I shook my head. I can't go through that again - being awake in a scanner while they force a needle through my abdomen to take a chunk of liver out. We decided that we'd take it they were they same, i.e. secondaries as opposed to a new primary, and we'd see in the next scan what's going on.
*big sigh of relief*
The fantastic news is that I am getting the new tablet drug instead of IV chemo. The side effects are diarrhoea (in some people), and a rash ranging from a patch of dry skin on your leg, to full blown facial acne in others. Chemo was extreme nausea, hair loss, sitting in the chemo suite for hours on end... weeks lost to sickness and sleeping... constipation...
I am, as you can imagine, ecstatic that I'm having the tablet. My friend said last night, that the corner has been turned now - that I needed to focus on and believe that yesterday was the last of the bad news. I used to think I needed to be a realist all the time, but the more I read and learn through this experience, the more I understand that it is only by abandoning realism that miracles can happen. Without belief and that crazed faith in the impossible, no one would have ever tried to build the first submarine, or airplane, or any other technology. So sod realism, and those horrendous figures that say I should be sorting out my affairs. People have survived worse situations than mine, and no one can say how or why, but the one thing they all seem to share is an unbreakable belief that they would get well. I am already on the mend!
Of course it's not all positive thinking. We are what we eat and I need to make a few more dietary changes, start doing some fitness work, and organising my writing day. I great thing is that I can do all this now because once we get the pain sorted out, I'll have all the time in the world to crack on with fighting this disease.
Life is good. Diclofenac seems to sort out the pain in the abdomen sufficiently for me to get on with things, and I've even been invited over to my friend's house to watch them (and learn about!) working a horse under saddle, and may get to ride if I'm well enough, and the weather is okay. Hurrah!
Posted by hesitant scribe at 10:51 am
Wednesday, 22 October 2008
It's that day again - Oncologist Day (or OD because I always end up overdosing on information). We have to go up to the hospital to the oncology dept, past the open chemo-suite where short-haired, or be-wigged patients will be sitting in high back chairs, their long suffering arms cradled on white pillows. Above their heads, plastic bags filled with clear innocuous looking fluids, will dangle from metal stands, connecting to winnowed veins via clear - we've got nothing to hide - IV lines that wind around their
victims patients charges, delivering their cyto-toxic concoctions directly into bruised flesh. It all relies on the gravity of the situation.
Past the chemo-suite there is another room, shared between those who are coping less well with their treatments, and those who need blood tests. The doors are often closed here.
We will give my name into the Reception Desk, smile, go along the corridor to the waiting room, and wait. Sometimes we are seen quite quickly, but at other times we can wait an hour or so. Then I will try to do my breathing exercises inconspicuously, and people watch.
Waiting rooms are ideal places for people watching. Here the faces are mostly wrinkled with experience. I feel very young sitting their among them. When I've been with my parents, people have made the mistake of assuming one of them is the patient, not me. In all my visits I've only seen 3 or 4 people around my age (39/40). It's easy to feel cheated about this, but if I start to feel self-pity, I'll remind myself of all the children who are tucked away in other places, hooked up to their own IV-lines, and moreover the majority of these kids don't complain, or wallow in feeling sorry for themselves.
Anyway, we may or may not get talking to people while we wait. More usually I find the English reserve keeps a lot of people quietly locked in their own inner worlds, while I will talk to just about anyone! The only people I don't want to talk to are the ones who go on and on and on about everything that's wrong with them, and moan endlessly. They are usually the older people, and I want to say, "Please stop being so negative and miserable. You've lasted long enough to see your grandchildren grow up and get married! If I were in my 60s when this happened I'd be just as scared, in pain, etc., as I am now, but at least I'd be thinking, okay, I reached my 60s, and that's something to be thankful for! I'm praying I see 40 at this stage in the game."
Sometimes my assigned nurse will come to see me. She is lovely, and means well, but talks to me with that hideous tone of voice that should really be reserved for patients in their mid-90s who are in the closing stages of their lives and dementia. It's the voice that has poor, poor you! as its undertone, no matter what words are being spoken. She says, "How are you?" with a heavy sigh that says I know poor baby, it's terrible isn't it? Life is so unfair! I think she'd be devastated if she realised she did that, but how do you tell someone? Is it acceptable to say, "Look, you're a lovely woman and everything, but if you use that 'talking to the terminally ill voice on me one more time, I may just have to ride Henry to my next appointment and trample you to death in the car-park!!!"
Time's marching on. The hour is fast approaching. Chemo or tablet? That's the HUGE question. Nausea or no Nausea. Baldness or Acne? Intrusive IV line or Bitter pill to swallow? Existing harsher than harsh treatment or brand-spanking new not-even-half-as-bad-as-chemo treatment?
Watch this space!
Posted by hesitant scribe at 12:40 pm
Monday, 20 October 2008
It's been a challenging few days in terms of pain. Lots of horrendous stomach ache which is probably gall-bladder and/or pancreas related. Crazy. If it weren't for the bloody cancer, I'd have had the gall-bladder out at Christmas and not had to go through all of this crap! It seems to have it's own little time schedule too, this pain. It starts around 4 ish usually (though sometimes as early as 2pm) and lasts right through till 10 ish. There doesn't seem to be any connections with when I eat/take painkillers/etc., so I can't avoid it either. I'm just hoping it'll sort itself out again soon.
Not a lot gets done when you're doubled over in agony, but I did manage to get around the supermarket yesterday to buy ingredient for another ratatouille. Afterwards I went up to my cousin's house for a family get together, as my cousin L is over from Vancouver Island visiting. It's been lovely to see her - she's like a sister as I saw her and her siblings just about everyday until we emigrated to the UK. Unfortunately, by the time I got there the pain had started and soon kicked in with a vengeance. I ended up driving home, swearing rhythmically to ease the worst of it. Luckily, hubby to the rescue - cooked a fab ratatouille while I helpfully rocked back and forth with a hot wheat-pack!
I did make a few writerly decisions over the weekend:
- Have decided that whatever happens the PhD is something I want to do. I just need to know how elastic the deadlines can be given my health. For example, can I be excused for not making it to any research meetings? I miss studying! Can you believe that? (I never really stopped studying though, just switched to equestrian reading and research!)
- Am going to start submitting work again this week. Mslexia dropped through the door and inspired me again. If there's one single activity that has helped me get through it's been writing about it. Most cathartic.
Facebook has been quite interesting these past few week as well. A strange little place I still can't get my head around. I never know what to do with all those invitations, for example. I don't want to be a vampire, or poke people en-mass! I started having a green patch but it quickly became the bane of my life (even more annoying than cancer!) - either the deer were eating all the plants, or the rabbit were digging holes and needed feeding, or I had to go to the 'shop;' and buy things like rakes, shovels, and animal feed! Even when you start clicking 'ignore' you'll find yourself spending hours a day clicking ignore to endless invitations. Still, it is nice to be thought of!
It's also a bit stalkerish - the way you can see what everyone's been doing, follow their comments and conversations, see who they've been super-poking and throwing sheep at. My husband is currently racing motorbikes - although you never get to the bikes actually race, you just click and the next screen tells you who won! Now figure that one out! The chat facility is odd too. I log in and it says 10 people, but when I click to see who they are the number becomes a 1! I've only managed to speak to one person on it so far! Am I slightly paranoid in thinking people log off because I've logged in?!!! MSN is much more my cup of tea!
What is is good for, is finding people you've lost touch with. I'm one of those people who has no problem phoning someone after 20 years and saying, 'Hello! Remember me?' I've moved around so much, and had the privilege to meet so many fantastic people, that there's still loads of people I'd like to catch up with. Of course it's embarrassing sometimes (I was strange, unconfident, unaccomplished, unmade back then) but it's also been good to discover that despite being all fucked up, I was still a good person, and people haven't minded me calling them out the blue. Over the past few weeks, I've had lovely long telephone conversations, filled with warmth and happiness, shared memories of the past and plenty of laughter. So facebook does have it's uses besides helping writers (and everyone else) to procrastinate just a few minutes longer. Well, I have 6 new notifications and it'd be rude not to at least take a peek at them!!!
Posted by hesitant scribe at 10:33 am
Saturday, 18 October 2008
Monday, 13 October 2008
I went to a health fair on Saturday. I didn't know what to expect to be honest, never having gone to anything like that before. I wanted to find some good recipes that use the foods I'm supposed to be eating at the moment (vegan basically, with a bit of raw food diet thrown in). Unfortunately, I'm also avoiding sugar as much as possible, and you be bloody amazed at how much 'healthy' stuff is full of sugar, and that's before you even look at the foods' natural sugar contents!
But Louise Hay reckons we should listen to our body and feed it well, that all of the 'for health diets' have cured someone or other. It doesn't matter which one apparently. So I ate the free sample of vegan banana loaf (with the added sugar) and it was delicious!
So the fair was chock full of foody stalls, all claiming that their food or supplement was the best that money could buy/could be found in the UK/Europe, The World. There were huge claims for supplements; they cured everything apparently, for an average of £45 a month per miracle potion. One wonders why anyone ever gets ill or dies at all, if we are to believe all of these claims!
And there was a talk on cancer: an alternative approach. It was a bit disappointing to tell the truth. He went on about how his wife cured herself of breast cancer with foods, supplements, and positive thinking (that was good - I was interested now). He said all the same stuff that I'd found on the net, some of which has been heavily refuted on other sites. But then he went on about allopathic medicines (your chemo and such like - normal Western treatments), and how no one should use them, how damaging they are. Which of course makes you feel just great when you've had it already! Plus, on the way out some man accosted me with, "He's full of shit, that fella. People like him should be shot!"
Hmm. I think we'll go with the allopathic AND the naturopathic thank you! The middle way, and all that.
I did get lots of free samples of natural soaps, vitamin tablets etc., and half a forest worth of leaflets.
Natural: Funny word. Surely everything is natural?! Okay, so meaning not-man made. Even so, arsenic and cyanide are natural, so are lead, mercury, and radio-activity!
Health Food: Another funny one. Isn't 'food' meant to be healthy? Isn't it odd that we have 'junk-food' and 'fast-food', and 'processed-food' - all stuff we eat without thinking twice, and yet these substances have very little 'food' left in them!
Trouble is, the stuff that is full of food (vitamins, enzymes, minerals etc.) tastes so different to what my Western palate is used to. I've been struggling to finish my meals for the past few weeks, getting slimmer by the day. I couldn't come up with any ideas at all, and then little 'un picked up and aubergine in the supermarket yetserday, and asked what it was. I was inspired! Ratatouille! Why didn't I think of it sooner? So last night I sat and wolfed down my wild rice and organic, home-made ratatouille - fantastic! Any other recipe ideas gratefully received!!!
Right. Off to write!
Am going into uni tomorrow lunch time, so will be in the SCR if anyone fancies saying hello!
Posted by hesitant scribe at 10:14 am
Friday, 10 October 2008
A quickie post today, I'm afraid, as kids nearly home from school.
It's been a great couple of days. Even the lung nurse phoning me to tell me my pancreas 'might' be enlarged, hasn't quelled my zest for life! I thanked her, hung up the phone and went riding with a big old smile on my face. This positive thinking stuff really makes a difference, eh!
Yesterday, I took K to school for the first time in a year (last Oct when I came of sick). She was so happy that I'm going to take her every other day next week, and then as often as I can. I also had a cracking ride on Henry - getting those transitions much more smooth again, and getting over losing my nerve - he tanked off again, and I had no panic at all! Am slowly but surely getting back to where I was before - next things to do are a) hack on the beach b) jumping again and c) getting to the stables more and hanging around to help out a bit - yes okay - I won't overdo it!!! Yesterday I stayed on to watch one of the staff lunging her horse - learned loads! After I went for Bowen and got home at 4ish, absolutely wiped out! Ended up sleeping for most of the evening.
But today feel great again. Have had healthy porridge, fruit, and watched a dvd by Louise Hay - she wrote You Can Heal Your Life which I bought years ago and still have on the shelf. My dad got me the dvd and it was like OMG why didn't I take notice of this when I first bought it. But you know, sometimes we just aren't ready for the information. I am obviously one of those people who need a sharp kick between the eyes before making real and lasting changes!
So now I fill my mind with good, positive thoughts. I tell myself I am healthy and strong constantly throughout the day, and whether or not it is coincidence doesn't matter - I feel stronger in the last 2 weeks than I have since the whole thing started last year. I feel more joyous. I appreciate life much much more, and I appreciate my body. I could wish I'd done all this years ago, but no point kicking myself either. The situation is obviously one the universe thinks I needed. Now I need good health, courage and strength!
And I'm still working on the novel too! Gosh. Success all round.
(Although I didn't go swimming today - oops. But I still haven't had any meat, sugar, eggs, or processed food in a fortnight! Or a brew!)
Herbal tea grows on you! Honest.
And I'm on to my 2nd lot of germinating seeds/sprouts - growing them that is. Now all I have to do is eat them all up!!!
Posted by hesitant scribe at 3:17 pm
Wednesday, 8 October 2008
It's been a week of deciding to do things, but also of procrastination, I'm afraid! A week of listening to Cds, and of reading books.
So I decided;
- to start swimming again
- to do some writing
- to be more active and get out and do things
- to eat properly - working toward the full Ph Diet
- have only got as far as digging out my swim suit and gym membership card - concerted effort to start Friday morning
- have so far only managed a couple 100 words or so
- Monday I made a few phone calls (although forgot to ring J back and she wasn't in on Tuesday), and did the food shopping. Tuesday I did very little. No excuses. Today I have to wait in for the Sky people to come back and sort out the mess they made of the wiring first time around.
- haven't eaten meat in 2 weeks, nor chocolate, nor sugar, nor white bread - or white anything come to think of it! I have had dairy in the form of butter, and milk on cereal, but today I just ate fruit until lunch time, so avoided it. I've not needed laxatives in 2 weeks, and am getting hardly any break through pain in the evenings.
So far, I'm feeling fantastic, it must be said. In fact, why on earth am I sitting around all day when I feel this great?!
I've been listening to some Cds by a bloke called Tony Robbins - change your life in a week stuff! I wouldn't normally bother with all this self help/self analysis stuff, but L sent it, so I had to listen. I'm half way through. Some of the stuff he says;
- Have an hour of power every day. This is your first hour of the day where you give yourself time to focus on goals, do visualisations, meditate, etc., and you must make it like an appointment with a very special person who you wouldn't let down. (I'm a crap friend - have so far failed to turn up to the first meeting!)
- Psychology starts with physiology. In other words, if you sit slumped and downward looking, you'll feel that way too. (This one works!)
- He lists all the excuses we make for ourselves:
- I'll do it tomorrow - tomorrow never comes
- I'll do it after I do x, y, z/I'm too busy right now
- I'll just think about it some more and then I'll do it.
- Visualise what you want in your life, focus on what you want, and push thoughts of what you don't want, out of your mind altogether.
- Get fit and active again if you've let that slide, some of us since childhood! Love your body by feeding it right, and keeping it oiled and active.
- To make a start, just tell yourself you'll just do 10 minutes. We are assured that once we get started we'll usually end up doing more (well, that's been true for this blog post!)
Bugger! I am all inspired now and want to jump in the car and head for the pool, but I can't bloody well go out till the Sky people come. And the kids are home at 3.30. I need to bottle this feeling and when I get up in the morning, I can drink it up. Then I'll do my hour of power, have fruit for breakfast, and go riding. And when I get home I'll do some writing before Bowen Therapy.
(Voice in head says, "Yeah Right! Ha ha ha! Don't make laugh! You'll stay up all night again playing solitaire while listening to the radio, and struggle to be out of bed for 9 am!")
I have faith in me! I can do this change your life thing! I have nothing to lose and everything to gain! The sad thing is, I had decided to make all these changes a year and half ago, when I started running and swimming, and getting fit. Only I didn't realise the cancer had already started - and I had left it too late to prevent it. So now I just gotta reverse it again. Pick up from where I left off. Keep going. keep fighting.
Posted by hesitant scribe at 1:39 pm
Thursday, 2 October 2008
The dark bit has been the last few weeks, carrying the heartbreaking news of what was happening in my body, wondering what on earth the oncologist was going to say to me. Would he just send me home to die, I asked myself, and if so how would I deal with that one? But the dawn did come, and things were not as bad as I had thought. (It's still not fantastic, of course, but better than the worse case scenario above.
The oncologist said:
1. The lung tumor has reduced, and the lymph node is no longer visible! For me this means that the radiotherapy was not a waste of time, and that means a lot psychologically.
2. The 2 newbies are small (17mm the largest), but he used the word virulent which probably isn't great. The liver can still function as long as 50% of it is clear though.
3. I have the option of more chemotherapy (Taxotere) or possibly a new tablet called Tarceva.
4. I don't think he's thinking of curing me, rather keeping me alive as long as he can. If I can make 5 years I stand a good chance of making it a lot longer. I've already done a year.
5. The miracle alkalising powder/liquid zeolite seems to be a hoax/sham from reading the forums where loads of people have tried it and it hasn't done a thing.
6. He said changing my diet to a more healthy one is something I can try, as long as I don't get so miserable with food I hate that I stop eating!
7. The glimmer of hope - People have survived this, and worse. Okay, so the percentage is miniscule, but it is not impossible.
8. I intend to beat this and get my body and my life back, starting today with some horse riding and Bowen Therapy. Oh and lots of water, herbal teas, and stuff that looks like it came from the bottom of a bird cage!!!
Thanks again to everyone who has texted/called/visited/etc., and just generally supported me through what has been a somewhat, er... difficult time!
Posted by hesitant scribe at 10:27 am
Tuesday, 30 September 2008
I haven't blogged much this past week - I needed to distance myself enough from all the fear and sadness I've been experiencing in order to be able to write about it.
It's been a tough week or so, since I got that unexpected/unforeseen scan update. I've been through every emotion under the sun, from absolute terror, to total devastation, and then back to positive and strong, and back again. The interesting thing about all this for me, has been the role my mind has played.
The mind really is like the naughty child the Buddhists say it is! It seems to wait for a quiet moment and then start to wiggle its way in with negative thoughts. I've had to really keep an eye on my thoughts, and be ready to counter the negative ones the moment they arrive. So far it's been working and I've only had two occasions when I've had to phone my dad and get him to come and talk to me (as negative thoughts take hold and spiral out of control.)
On the plus side, I feel supported and loved by so many people, and really don't know what I ever did to deserve it! They had a collection at work for me, to help with the costs of Bowen Therapy - which is really helping me so much, emotionally and physically. I cried (in a good way!) when Babs came over and told me. Thank you so much, all of you in the English Department at Edge Hill - you have no idea how much your gift means to me.
I'm starting to see myself healthy and strong again, healthier than I've ever been before perhaps. I am trying to visualise that - to really reach out and touch it as though it's real, and then maybe it will become real. My rational, academic mind tries to but in often with thoughts of, "you're just kidding yourself - clutching at straws, love," but I've seen how negative thoughts perpetuate and aggravate situations in my own life, and that of others. If it works negatively, it stands to reason that thinking positively also must attract more of the same too!
Also, the whole approach to food as medicine has given me lots to think about too. I feel as though I'm actually taking control back of the situation. Since the new regime I've been going to the loo normally for 5 days now without any laxatives at all! I feel more energetic than I have in a year. And that's only after 5 days (of small changes too - I haven't even started on the full on program yet! Just cut out meat, dairy, processed foods etc, and started drinking more water, herbal/fruit teas, eating sprouted beans, brown rice, seeds and dried fruit, and a whole host of stuff I've never heard of before is waiting in the kitchen to be prepared!!! My taste buds are upset and beg for chocolate and tea with milk and sugar! I watched the family sit down last night to fresh lamb steaks, while I munched away on raw sprouted beans, lightly fried stir fry veg (2 mins in olive oil), short grain brown rice, and a sauce made of butternut squash, red onion and red pepper. Hmm. But I will get used to it, and my body seems to love it. For breakfast this morning I had 100ml of wheat-grass juice with algae in it (not as bad as it sounds!), seeds, nuts, dried fruit and a half cheat with 2 pieces of whole-grain seeded brown bread toasted. The diet is called The Ph Miracle and is so complicated, but I'm getting there!
Today is a lovely day. The rain is pouring and the wind is shaking the trees outside, and I am warm and safe in my living room, talking to whoever reads this, and hoping that the message gets through - that no matter how bad things are, it is possible to scrape yourself up off the floor and be happy again, and it doesn't matter if you collapse now and again, if the wicked thoughts take over, as long as you nip them in the bud or have someone who can help you when they've taken hold!
Doc tomorrow. No idea what he will say, but I've booked Bowen the day after, and horse riding, to help me get through it, whatever he says.
Posted by hesitant scribe at 12:13 pm
Sunday, 28 September 2008
One of the main ways to restore my health is through diet, so this week I've been thinking, and reading lots, about food. It makes for quite frightening reading - that most of our western diet is actually non-food! Apparently our daily intake should be divided in an 80/20 split, with 80% fresh vegetables (lightly steamed or even better, raw), fruit (as with veg), sprouts (as in water cress sprouts etc.), brown rice, unprocessed foods, seeds, grains, nuts, and so on. The 20% is for meats (if you must but better not to), dairy (though again, not recommended), oily fish, and so on.
I don't know about you but my diet, even though we cook from scratch mostly, is still appalling in terms of the 'healthy' eating rules!
But all that is changing, albeit a bit slowly. I have to make my taste buds change to accept soya milk, and to change over to herbal teas. No more sugars, saturated fats, meats, or junky, processed foods.
Apart from learning about food, I went horse riding again, and have been mostly positive and up. I am certain that the day is coming when everything will be back to normal!
Posted by hesitant scribe at 12:18 pm
Tuesday, 23 September 2008
I had Bowen again today and can honestly say it is the most relaxed and positive I have ever been in my life! I was on cloud 9 afterwards, and skipped out of there, joyous to see the sunshine and 100% confident that I can beat this.
I did slip back, however, on meeting some people who don't know the scan results, and in telling them I found myself getting tearful and afraid again. It also makes me sad to see that other people are frightened and upset by the whole thing too.
But I have managed to turn it around again. I've been looking at the stuff listed on a site (cancer fighting strategies) with alternative strategies, and am now researching further into these. The main things that keep turning up from a billion sources are;
- making the body alkaline through diet, liquid zeolite, or both (cancer loves acidic environments)
- getting more oxygen into the cells (cancer loves low levels of O2)
- killing of the fungi and bacteria that flourish in a low O2/high acidity environment (diet/supplements)
- re-introducing the good bacteria (through pro-biotics and diet)
- using positive mental strategies as outlined in The Secret and in countless other sources (to believe it, see it, visualise it gone and the body left with perfect health)
I'm not giving up by any means. I've just seen and heard too many stories of people curing themselves with the above methods that I cannot just dismiss it out of turn as my doctors appear to. One doctor actually told me that a change in diet wouldn't make any difference whatsoever (what? to anything? Changing to a high fibre diet has already sorted out most of my stomach problems and that was recommended by a dietician!)
Riding tomorrow and some visitors, which will be nice, and I also have my birth uncle over from Canada until Saturday, and enjoying that loads! I even made it to the Anglican Cathedral in Liverpool yesterday - although I had to leave U. B. and hubby to make their own way home as there was more they wanted to do (Beatles shop/The Cavern etc.,) and I was starting to be tired and in pain. But the point is I drove there and back, had a reasonably good day, and am feeling very positive again!
Righto. Still got a broken Sky box, so off to watch 'Lost in Austin' on ITV's catch up web service!
Posted by hesitant scribe at 11:30 pm