Lisa always told us 'it's all about the people', and that's why I, along with N and F are sat here composing what will be the final entry on Lisa's blog.
So it's time for me (aka Hubby) to tell you (the people) that yesterday afternoon, just before 3pm, Lisa passed away peacefully at home.
Those of you who have followed this blog will have witnessed Lisa's courage and strength over the past year or so. It is that courage, strength and well, sheer bloody mindedness that has driven her to excel at everything she turned her hand to during her life.
Since Lisa's passing, I have received many, many facebook comments, emails, cards and letters and I'm sure there will be many more 'whispers in the ether' - telling me of the wonderful experiences people have shared over the years and how their lives have been touched by Lisa.
I for one feel so, so lucky to have had almost twelve wonderful years with her, and words cannot express the emptiness I feel right now. My life and that of our two children changed forever yesterday and I know that memories of times past will help fill the void.
So it's time for me to sign off and put the kettle on and have a nice cup of tea.
That's all folks!
A wonderfully thoughtful friend bought me a Dictaphone so I can hold a sleek shiny device in my hand, lay back and look like (maybe not look like exactly) Barbara Cartland, while I proliferate my writing en-mass into the world without the need for the usual taxing manner of pen and paper. It's good for up to 17 hours playback time apparently (Beloved by Toni Morrison, only took me 8 hrs to read aloud!), but sadly the product guarantee "does not cover the product [for what, exactly?!] where the fault is due to misuse, abuse, use in contravention of the instructions, [etc...]."
But said Dictaphone may be in danger of being too complicated for it's own good.... I'm already having urges of killing it after what feels like 3 hours but is probably only 5 mins, so have just roped poor S into trying to figure it out. (T, now you know what your next task for me is, ha ha!). S has left and now we're still non-the-wiser, so kids have got it now lol. Let's see how far they get...
Health wise, I'm still losing weight, so the agenda has changed from trying to get my body all alkaline, to just trying to get it to take on weight and build muscle again. My dad is running round like a lunatic trying to get a palatable menu together for me, while mum is tapping her EFT silently in her arm chair - I can see it all now, where would I be without them?! God I love my parents soo much! I hope they know that - really really know that. Any way I've had to tell dad that there'll be no Lisa to alkalinise soon, but given that I'm ravenous, eating isn't an issue at all, and am pleased to report that normal pees and poohs, burps and farts are at last returning! You may well laugh, but I was getting worried!!! I have blurred vision still, but no pain at all, no nausea, and no sweats - whatever happened to those I wonder?!! - sleeping well, despite a bit of a late-night panic attack caused by a thick phlegm ( loverly, sorry) that threatened to drown me :( Enough moans for one day I guess. Take it easy and writers.... write!
You see, you are never too ill to be naughty and yesterday is living proof of that. Okay... so I didn't murder anyone, but I did go to Mac Donalds for a chocolate milkshake, for which Doctor Young (remember the PH diet?) would have me hung, drawn and quartered. Today I am behaving myself again, eating properly and trying to keep my system alkaline.
The visitors keep coming, which is lovely and I'm not knocking it, but I am getting really knackered now. Sometimes I feel as though I'm being killed with kindness.
There's so much I want to say, I hardly know where to start. I'm conscious that poor F is in the kitchen while I'm sitting here dictating to poor J (F should be safe enough with hubby in the kitchen, though, jejejejeje).
At least my skin is in better shape than it ever has been, what with all these lovely skin creams - do keep them coming! - I had a shower last night, followed by being slavered in Molton Brown body souffle. It was hard work, what with all this bloody muscle wastage an 'all, but I did it, and felt soo luverly afterwards!
Haven't read anymore of the Seagull book yet, but did watch Lost! I tell you, I thought I was going completely mad watching that! It was like, is it the morphine?! And wtf did they do to America's Next Top Model aka ANTM? It went all futuristic (silver hair for the 2 Js no less. It was quite good, mind) I loved watching it with my Big' un. A little bit of normality with the kids is important I think, especially with nurses passing by the house twice a day, every day.
N.B. The nurses have all been, without fail, lovely/friendly/kind/efficient/accommodating/etc. and, unusually for me, I'll swallow any buts!!!
Note to any one recently diagnosed, start with the diets today! Don't leave it until you are throwing everything back up, oh, and start the visualisation and keep it going! I only say this because it does get more difficult to concentrate!!! (Or is that my female 'butterfly' mind perhaps, that flits and floats - and always did, regardless of morphine/meds/etc.)
I still awaken every morning, with an ongoing narrative, telling me what to type here on the blog though. The old mind is alive with thoughts of love, success, health, and someone - would you believe?! contacted me through facebook, to say how angry they were about my tumour/condition etc! I don't want to sound all cliched here, but I do truly believe that my illness is a lot to do with forgiving myself and other people... indeed when I first had acupuncture, the Chinese Lady told me not to get angry with it. I'm not angry at all. Really. And not even trying to be all goody-two-shoes either! I heard it said, early on: 1-in-3: why not me?!!!
So, all that spiritual work I meant to do on myself as a screwed up, lost teenager, is being done now...earlier, as I staggered down to the end of the garden reciting, "I can, I can, I can!" The I-Ching says I'll be fine if I do the work, and it's always been right so far!!!
More tomorrow! xxxxxxxxx
... but I must admit it isn't easy - though I just made it to the end of the garden again without throwing up/falling over/crashing into anything/etc., (ahem... where's me medal?!). My vision is blurry, and cannot think how to clear that - other than to get people to type for me!!! I'm truly disappointed that I never made it to the riding school this morning, but there'll be other days where I'll be fitter and can enjoy it more (ha ha!).
My best friend, Desi, from Spain came over on Friday evening, from Mijas Costa. Only she could miss her flight (etc.,) ! She phoned us in hysterics from Malaga airport on Thursday having had her usual dramatics, "bu I-I'm here in time" (20 minutes before departure) "
No love that's late!
To cut a long story short she arrived safely a day later but still had to leave on Sunday morning. We didn't have much time together, but it was quality time... a Spanish lesson or two was knackering. It was lovely to think about all those times in the past that are responsible for the novel I am now writing, and I am looking forward to her being able to come over and see me again, determined as I am, to live that long.
The house here has been chaotic, I hardly know what I have done to deserve all this attention. Ha ha! (I keep trying to remind myself that people would visit anyway even if it were an ordinary dose of flu - yeah right!) And not just because it's the big C.
(Can you believe this? Hubby and I are actually arguing over blog now which I think is a fabulous sign of health!)
I'm sure Julia Darling didn't have this problem.
Please forgive me, but I've lost a whole load of days on the blog again due to loads of scrumptious visitors.
Saturday - Desi here all day. Did some Reiki. My supervisor came from college with her husband, it was lovely (thank you for the poppy cake). We talked about lots of secret writerly stuff - but all a bit Top Secrety still so can't talk about yet.
Sunday - Walked to end of garden again, still eating, still throwing it back up. Couple of unexpected visitors and got quite knackered at one point.
Monday - Spending today with Hubby. We did our wedding albums which I think is quite good going after only nearly ten years of marriage! But in typical fashion when hubby got everything out, he discovered that I'd already done it. Oops! I never realised just how organised I was/am.
The main problem I'm having at the moment is trying to see straight because something insists on making my vision blurry! This makes me quite tired but anyway...somebody sent me 'Jonathan Livingstone Seagull' by Richard Bach. Isn't the Universe a funny place! People have been telling me to read this book for the last year and now that my eyes are blurry, the bloody thing arrives through the post, but I've read to page 24 and decided it could be a book about becoming a writer. Why on earth didn't I give more validity to my writing all the way through? Why has it taken this to make me see that our, i.e. women's life writing, does matter?! I think the French are calling it 'autofiction' (?) but it's basically about using your life in your fiction, which is what I've always done. Hoorah! Does this mean I've been ahead of my time LOL, or does it just mean I've got no imagination. In my defence it could just be about the way of saying things and seeing as I adore words, surely they should matter too. Read the seagull book and take up flying! I dare you to find the time.
A little word about procrastination, it really isn't a good thing! Even if it's only being used to gather your thoughts, imagine how many books I'd have written now if only I'd actually done some work and let it fly rather than immediately believing it to be crap and binning it. It's only now, when time is so pressing, that I realise it's all about,
and a healthy dollop of terror. After all what else is there?
I, personally, am looking forward to a healthy dollop of terror on the slopes in April, regardless of what the medics might be thinking.... I need to concentrate on rebuilding muscle again, and I'm using my time in the evening to visualise this tumour in the frontal lobe, (named Billy by my little one), buggering off!
It's stupid o' clock (again - oops! 6:30am, or something and I'm back in bed after wandering around the house in my knickers trying to find a pen soooo badly - as you do at 6 am ! Oh! And a banana, 1 piece of Green + Black's chocolate / milk (blue one of course). And something to write on !
Found Bramble and breathed a sigh of relief - what with all these nurses in and out all day ( well okay - it feels like that from the perspective of the sofa, so there ) .
Grabbed my copy of Auto/ Biographical Discourses : Theory. Criticism . Practice by Laura Marcus out the family bathroom on route back to bed, because what else do you do in my current position (?!) if not read ?!!!!
I wanted to think about, why write ? That old burning question, that has consumed my entire life. Why write ?
Why feel such a need to commit to paper these thoughts, these micro-flashes of electrical energy in a brain that now contains a tumorous mass which threatens to undermine whole heaps (now that scares me senseless ! ) of mental faculty, sending Lisa to the bin.
( So then I breathe really deep - and remind myself that The Universe has never let me down yet and never will , so it's okay. I'll get out everything I need to - we'll see, honest. Have faith. Cool calming, reassuring faith : it will be okay ).
Such a lot to say; please forgive me if I get sidetracked a bit !! )
Oh, yes ! So why write ?!
Is it like those women of old - wanting to preserve for posterity, a record of what my life was like for my girls - so they may be strong , and forceful , and strike a balance between their femininity ( they are both sooo beautiful ! ) and their strength (we all have quite a mannish side too I think ) , so they can see - This is perhaps the reason for ALL my writing ha ! ha ! - that in life, things happen, and we're all on a road going along, totally blind, and things happen and we think - Oh God ! This is so bad I cannot live with it/through it/past it/etc. It's the end of my road - or even just wanting it to be so, but stay on the road: keep putting one blistered foot in front of the other and every time, you'll see -that if you can care to keep looking , the road always opens out into the most beautiful little cul - de - sac, or glade, or even just an entirely new turning will appear offering comfort, shelter and joy you couldn't have even imagined previously. It's true. I know.
Even illnesses ( I believe even this now - we'll look back and laugh at it. That Hesitant Scribe one's a crap writer - only published her cos she was dying LMAO ! )
Biggest examples, I can think of just off the cuff:
1. Ex husband stabbed me. V.Bad.
2. Had tetanus jab: Direct outcome.
3. In Spain got self hung by arm on barbed wire fence - don't ask - suffice to say you're never too old to do stupid shit !
4. No medical , but didn't need a tetanus anyway thanks to No.2
5. Outcome: celebration and healthy wound recovery !
1. Didn't want to leave Spain - December 1996.
2. Had had such a bad time at school in Liverpool as screwed up transatlantic adoptee ( 1976 I came to the UK for the second time and got bullied in school until 1987). I had poor O' level/GCSE results so couldn't get a job, other than shop/bar work which as single parent in Spain with a 2 1/2 year old was no good at all !
3. So cut a long story short - went to UK again sobbing as if the world were over.
4. Back in the UK had to make the best of it so went back to 'night-school' and got A' levels.
4a. - met hubby. Awwww :-)
5. Went to uni, supported by hubby.
6. Rest is academic my dearies !
Okay, so it took work and tears but heck - just look at what's achievable in spite of what's in the way.
Miracles are all around - my life is testimony to that on every level.
How can you be happy and dying ?
I dunno -
1. By looking back and feeling so grateful - make a thanks list whilst still alive.
2. Still breathing ? Then you're still alive so try to be happy about it. Because the truth is you won't be alive forever.
3. Faith I'm safe . Alive or dead, no importance - I'm safe.
P.S. I think the best way to stay alive is to avoid all eye contact with health professionals !
I'm going to run out of titles soon (ha ha ha) but am actually typing this myself today - woo hoo!!! And am watching nutrition intake (porridge/wheatgrass/spirulina crap/etc., very little) versus outgoing (vomit - none today so far, but then just tasted my first organic raw juice drink OMG!!! Juice drink - now there's a fine line between wanting to live and drink that or never have to drink again!!!, wee - very little, poo - none! [do you SEE what I have been reduced to in my topics of conversation ???!!])
Also watching physical activity levels - again, not a lot here. Still going to loo alone upstairs, and after making yesterday's list, put on shoes and walked to the end of the garden. So, I'm sitting up, albeit on the couch chatting to people- still like Piccadilly Circus here oddly, but as I said the other day it is ALL About the People, friendships and relationships, everything we do/say/read/feel/care about in life is for or because of people, whether we'll admit/face/see it, or not. People who've been diagnosed out there - watch the stages of how people are with you and where possible, covet the one's who cherish your dreams as well as their own - hence so many gorgeous people have typed for me this past few days when I couldn't, value your opinion and/or have opinions that are valued by you, and of course all the Love Stuff - I have a lot of love for people, and like to pride myself on showing others that it is possible to have a difficult time (or even lots of them) in your life, and survive it because people have always been there to teach me that.
I started writing my novel as a thank you to the people in Spain who met me as one severely damaged and broken individual and helped to make me whole and confident again. The most important lesson of all was how to trust because after what I'd bee through - for anyone who may be interested out there? was hard that palaver with the mad Algerian
actually someone commented about an Albanian(?) for some odd reason, but no, there's a HUGE cultural difference there, for one I learned French and Arabic Swear Words, not Albanian, ha! ha! will let you off this time but please read carefully ;-)
Anyway, still trying to fathom what to do about novel - it's finished in my head and ends up being half fiction half autobiography, whilst this blog that started as a writing experiment is now urging me, not only to write, but to keep on writing AND living, to keep on analysing the wonderful life I've had and ever helping me to be a writer who wants to show a brighter purpose - tall order but I'm up for it because I never had to endure a war-zone but I did grow up in a bit of a Scouse mini-Beirut! And lots of little things add up to be bigger things, no?! I no matter how bad things have gotten/been someone or something has always assured me that the Universe is unfolding as it should be and that I'd look back and say thank you and mean it!!! And, no lie, I always have done even now, up to and including all of this health stuff. Honestly, you just have to look really hard sometimes!!!
For example, my adoption was a dreadful thing years ago but is now a wonderful part of who I am today. Not to mention the fact that I have an extra family now - whom I think the world of - and it was a really amazing tale of fluke and fortune in finding them online in a trace!! We went to see them in the 2nd year of my degree because my birth-mother was dying, but she's a tough old boot (I'm banking on it!) and is still here some 7 years or so later!!!
3 days and a pc and one super hubby needed for searches BTW
I'd wanted to work with adoptees and tracing one day, cos I think it is important to know where you came from psychologically even though I believe it doesn't matter spiritually but there is yet another novel to be scribed!
Righto, left hand worked very hard now needs a rest, as do eyes etc!
Thank you to everyone who's still with me/here/reading/laughing/whate vering
Everything's gone a bit mad! I hardly know where to start, and yet every day I feel a little more tired - and it isn't as though I'm like er... doing loads either, but keep drifting off - that's got to be a bad sign, hasn't it!? ha ha!
Speaking of drifting off, it's now 20 past 11, and this is the first chance ~I've had to come back to this post!!!! And only because the fabulous Nee Nee is here, making me porridge... tis official - I am like proper poorly now - have hardly eaten all day, am n0w 7st 10lbs too, but still getting to the loo on my own, and now thinking of getting to the riding school again somehow, at the weekend? As for riding, it depends on, whether or not I can get the strength back.
For anyone reading this who may have just been diagnosed with multiple tumours and has, heaven forbid, started having 'symptoms' I reckon this here is a bit of a danger stage: I still don't understand why, and I'm not questioning it, but when everybody starts popping in to see you with such wonderful presents/cards/flowers/fruit and even the GP has you scheduled in for private weekly home visits, not to mention District nurses twice a day it makes your head almost start excepting a rather immediate demise.
So folks, this is where I am now having to learn to strike a balance between mentally fighting back and physically fighting back whilst at the same time realising I can't e mail everybody back at the moment. I just haven't got the strength to do something as simple as digesting food AND email someone!!! So please don't be offended if I don't always get back to you in these few coming days - I'm not planning on going anywhere, just on spending a few days getting well enough to do all replies the following week!
Actually this blog will be the one thing that keeps me going I think and I want it to be useful for anyone else in this position - with multiple tumours, whether they die or not, to show that, even though it sometimes feels as though your funeral is being planned around you, ("WHERE WOULD YOU LIKE TO DIE?!") You need to keep wanting to live, and have a plan to keep you going (my dad, "Now that you're not eating anything let's start back on the nutritional war").
1. Keep breathing.
2. And eating - doing proper hardcore cancer fighting, for which I am even prepared to ingest spirulina and wheat-grass juice!!! Joder!
3. Doing EFT Tapping to help body to retain nutrients.
4. Positive thinking - and this is why I so want to talk about this here and now, because I am not in pain, feel loved and useful, have no regrets - other than got to finish my writing, etc., so it almost becomes like, "ok, we're ready now!" and the medics. when I ask them, okay, how long, like exactly (you know me, I want it down to the last millisecond), they all ask me, how long is a piece of string!!!
5. Need to plan a trip out of the house (and already, in a week or less, this is starting to look more and more difficult/challenging.
6. Need to spend time with family that doesn't feel like a death bed scenario from Dickens' or somewhere!
7. Close thine ears to any tollings of any bells!!!
...Of what I don't know but other people are now having to do all the typing for me (husband keeps cracking jokes whilst I try to dictate) so the atmosphere here is pretty high, Ha Ha! I had wanted to go to the riding school today but don't think I'm going to make it now even though the sky is a beautiful blue outside. Feel too dizzy and sick to contemplate moving full stop. Fuck knows how I'll get this book written or which poor soul will end up typing it out but it's looking quite plain that it's not going to be me (or Fay lol)
Last night the district nurses had to come out at 2.30am to put a fluids drip up- I'm starting to look like a prune. Trouble is my stomach doesn't seem to agree with my plans to stay alive. I keep telling it we need some nutrition but cancer seems to have made it deaf as well as anorexic. So the question is do I... a) eat and hurl or b) give it a miss and fade away?
Just let the cat out and the garden smells delicious. There's lots of whispers in the kitchen (lots of talk of pain verses quality of life) I am reminded of John Diamond's last column in the Times and thinking a) the Bastard and b) perhaps I should have got to this stage of acceptance a few months ago.... but then the blog wouldn't have been the same would it? And besides, it's giving me something to keep me going even now, and if I do survive- long shot- I'll have a lot of thanking to do hee hee. Someone suggested getting this blog published posthumously but I don't know what purpose that would serve other than feeding one sycophantic writer's desires to get in print even if dead!
If there are any poor souls out there reading this just after their own diagnoses I would like to say keep positive BUT do bear in mind that if it goes tits up, you may realise that you have left yourself with too little time. And that is crap, especially as I now want to blog /chat more that tell stories, but I've got to do other things like
1. Do a memory box withe the children
2. Get all bank details sorted out
3. Stay alive as long as possible
4. Still do positive thinking ie. some fortunate bastards have actually made it back from here!
Yesterday was pretty scary and I was relieved to have woken up this morning but yesterday, while the fluids and nutrition came in and went out again, I watched a video of my eldest daughter with her- one that she had never seen before- of her and her birth father. It was very moving for my hubby too as he hadn't seen them either. I haven't told you about this but I had to leave my demonic first husband after he tried to stab me and her (then two and a half) to death in my friend's kitchen. Another novel there! Lots of good memories and hopefully humorous ones at that. Luckily now she is sixteen she is legally safe from the Algerian Twat so I can tell you this without worrying too much that he'll ever see this and try to make contact. I, back in 1995 chose to flee the country leading to building a new life in Spain- not to mention- coming to grips with my own identity again after five years of mental and physical abuse.
It actually all worked out really well and the people of Fuengirola did indeed rebuild me; Installed me with a new language chip;
Not looking so great this morning!
New menu; New outlook; New hope. Actually they gave me the confidence to be able to return to the UK, almost bilingual and do a whole host of exams and thingies (bugger the PHD) I can get my head around the rest of the novel but the thesis- that might be asking too much. Excuse me while I throw up again. Going to leave it here for now, I am conscious that I'm being really selfish sitting here dictating this while all people have come to do is drink tea and eat my jam tarts ha ha.
Life has changed unrecognisably in a week. This morning I was woken at 8.30 / 9.00 a.m. by a lovely but apologetic District Nurse wielding a hypodermic needle filled with an anti-convulsant - such service omg! Friday, the week before, the same nurse had arrived mid-afternoon wielding a driver for the first time and I though ,"Oh No! This is the Beginning of the End" (And I very possibly wasn't wrong! Ha Ha!"). The driver is a little machine/injection thingie that goes under the skin at one end and into a syringe the other. It's to give me anti-nausea meds (but I'd seen them before in Clatterbridge on the terminal patients so was completely freaked out by just the mention of it - also I was needle phobic - til about a week ago - so that freaked me out too). Anyway, I calmed down, accepted the driver and drugs, and remained hopeful the situation wouldn't get any worse. So far, so good. Went to bed at 1.30 a.m. and then the weirdest thing happened. It was like having cramp in your perception, meaning I could see Hubby's face, and then like an LSD trip, the image kind of slid down to the left and then snapped back up into place again. At the same time I became aware of tunnel vision and my left leg shot out (again like cramp). I was trying to regain control of my leg when everything went black. The next thing I remembered was being outside in the street and then - cut film sequence - in back of ambulance - lots of faces - in hospital - left in hospital cubicle, and then memory was ok from then on.
I had to spend the rest of the night and following day on the ward under observation, by this time we knew I'd had a seizure / fit thingie (SHIT & DOUBLE SHIT!!!) and had been sent for a CT scan... but worse was to come (Christ I soo know how John Diamond must have felt as he continued on with his writing
*interruption to note this is the first time I've been alone since then - been on 'fit' watch, and have so much to say/think/etc but at same time - feel sick and eye-sight is all blurry so hubby, bless him, typed up first half of this post, and I'm struggling to get this down, hitting delete/backspace more than the letters lol*
Hospital CT SCAN of head showed a big tumour in the Right hemisphere, hence fit, so more meds with scary names :( by this time I was growing number by the second) omg omg omg - then back home eventually, tons of tears/heartbreak then calm, then the news, you can't drive anymore - absolute HORROR at that one.hospital staff gave me the pillow just because I said it was the best pillow I've ever had! Fuck me, the privileges of the dying, eh!). The food was superb and I really can't fault any of my care medical, personal or otherwise. Tuesday, I had an appointment with hubby and palliative care doc, and she had rest of scan results: lung unchanged, pancreas one increased substantially as have the two in the liver - think I've told you all this before?!! sorry if I have! - so anyway, the appointment ended up being one of those 'how we're going to manage your pain etc. jobbie', bur when you've been in pain the entire time, as I have been, that's all that you're scared of!
Weds we went for the "I'm really sorry, but" appointment with the oncologist or
not a lot aside from sorry,as though it could be his fault at a all, which it clearly is not and never could be, for that matter. Nope. This is my task. My Journey. My own Personal Head Wreck, and there are two major thoughts/feelings:
1. Relief - no big operations/pain pain pain
2. Contentment -I've no regrets in my life - am not ready to get off just. yet but if that's what fate has in store, then okay... *she says through the biggest f***off wry grin you can imagine*!!
And can I just say 2 things too!
1. Thank you to everyone who has in no particular order -rung/emailed/messaged/texted/visited/cooked meals for me&family/driven/babyminded/baked/hoovered/cleaned/even bathed me!!!thanksNic/held and emptied sick bowlseveryone/talkedtome-thankseveryone/keptmespritualandtherefore sane thank you dad I love my dad, and I have the best Husband-in-the-Universe.
2. Going to Learn this EFT Thing as it just might do the trick, and even if it can't cure me, if it can just control symptoms like nausea/urinary hesitancy/pain,and there's so many of people want to learn it to help me (?!) why on earth I wonder- this week has taught me just how blessed, lucky and loved I am!!!
3. I lied! Tis 3 But it's taken me 30 odd mins to write that last section - some pics tomorrow, shall be added!!!
Listen! Night Night Everyone - as an exercise, if you are really fed up with your life at the minute, ask yourself, if you were told you had to go away on a long journey, who would you miss, but also who would you miss? Nothing else. Just the relationships/he people.
I love unicorns, have always loved unicorns and so a friend did this picture for me, entitled Heal Lisa - Lovely isn't it?'!
It was the 2 year anniversary of the blog the other day, and I was thinking - how life can just take a turn for the worse with no warning. -Friday afternoon the District Nurses came to the house and hooked me up to a syringe driver for anti-nausea drugs, which seem to have started working for me as I've only just started on them (have to wait 48 hrs to see).
So, Friday night - went to bed, and can hardly describe what happened next!!! It felt like cramp - the kind you get in your big toe only it was in my head... I saw my husband look panicked and then lean across me to get the phone, and just heard him saying something abut an ambulance and then I woke up in the ambulance but wasn't thinking clearly until we were in the hospital. Apparently I had a fit/seizure due to another tumour that has grown in the frontal lobe I've no idea what this means in real terms and am still in shock to be honest, a bit dazed to say the least! More medication - bring it on but the worse thing is that I can't drive my car no more beekeeper!!!!!
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!
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.
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!
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!
...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.