Pre diagnosis #2

By my calculations i must be about up to 2003/4 by now - my apologies to anyone who picks up on any timeline inconsistencies,i remember a lot of events but its been quite a feat to try to assemble them into chronological order in my head.

In December 03 (i think!!!!) me and MrS ended our relationship and i fell apart,really fell apart.
I moved into my own flat in Crofton Downs and lived on my own for the first time in ages. It was lonely and i didnt sleep much.My eating went crazy as i rigidly tried to control every aspect of my life that i could.
I was still eating super healthy and not much of it,i had constant stomach pain and i was only having a bowel motion every 3-4 days.

The funny thing about constant pain is that it sort of sneaks up on you. When i think back it seems unbelievable that i tolerated it but at the time it was a bit like this :
it started off very low grade until that just became part of my life,like eating or sleeping.Then a year or so later it was a bit worse and again i thought 'i cant live with this' but then your body (which really IS an amazing piece of machinery) readjusts and realigns itself until that pain is just part of your everyday life too....and so it goes.Till one day (for me it was Feb 2009) you wake up to whats going on and say 'there is something SERIOUSLY wrong with me!!!!'
But anyways, back to 2004-

The other thing that was going on at that time was that my teeth (which have always been a huge problem and hadnt been tended to,apart from brushing,since high school) were giving me MAJOR gripes. I couldn't eat anything even vaguely hard like apples or chippies.
I was inhaling nurofen to deal with the teeth and stomach and i thought in the back of my mind that it was a possibility that my stomach pains came from the infection in my mouth being carried around my body.
The saviour of my sanity arrived one day in the form of MrI and his new girlfriend MissE (who i had never met before) moving into my poky little flat when their old flat disbanded.
I soon discovered that MissE had a golden soul and it was magic having the two of them for company.

Things took another change for me around this time (I'm guessing 2005ish) - i was hungry ALL the time (seriously,all the time)  and with MissE in the house to join me i gladly ditched the obsessive healthy eating  for mostly healthy eating combined with lots of drinking (alcohol).
By now i was only able to have a bowel motion when i was pretty drunk and my body was totally relaxed.
It shortly progressed to the point where i would get drunk several nights a week with the sole purpose of trying to get some action and relief from my body.
I couldn't quite understand how i could be SO hungry all the time when it didnt seem like much was coming out the other end (no doubt an oncologist could tell you why).

My upper K9 finally gave in and my whole face swelled up in the most agonising infection (honestly - get your teeth sorted! believe me that it only gets worse not better!).
MissE had just started going to a good dentist so i went along,got my tooth pulled and for the next 18 months had weekly appointments to get the rest of my mouth fixed up. I, of course, thought that once the infection was gone,maybe,just maybe,my guts would all sort themselves out but this didnt happen.

Meanwhile,emotionally i was very up in the air.i would swing between ridiculously happy and ridiculously unhappy- it must've been hell for MrI and MissE to live with. I was so moody,constantly in pain and worried,despite another visit to a doctor (who told me i was suffering from constipation and gave me a script for metamucil).
I was drinking a lot and eating a lot,still always hungry.
MissE was also suffering from a lot of body related issues borne from stress at work. So i busily self diagnosed myself from what the doctors had been telling her. Finally lovely MissE sat me down and told me she knew a lovely doctor and that i should go see her and have myself checked out again -mental state as well as physical (good advice as i really was all over the place mood wise).

The doctor (who was lovely) checked me out,felt my tummy. Told me i was constipated, listened to my tale of anxiety and weight loss from when i was 18 and referred me to a therapist.
I went off to see the therapist who listened to me telling him that there was something wrong with me,and that i felt that there was something black growing inside of me.
I told him about my dreams of being consumed from within and that there was something WRONG with me.
He asked bout my parents and my childhood (*smiley face at the cliche response*) and told me that i was mildly bi polar,hence the mood swings and negative thoughts.
To my shame to this very day,i believed him (after all, he was the professional and professionals are always right,right?) and told my bosses and my Father (who were all fabulous).

I was still drinking excessively because it made the pain go away for a while and at the end of 2005 (Mr I and MissE ) got engaged and moved back in with the parents to save for a house (and probably a degree of self preservation and a break from living with me).
I MISSED them so much and for quite a while continued drinking on my own from boredom and for escape in the evenings. I threw myself into a couple a relationships that although they lasted,were never going to LAST.
My stomach area in late 2005 was quite bloated and protruded,i just thought that i was fat.

In 2006 Manchild made a reappearance in my life (yay!). He had a broken leg and was off work,came over to watch a movie one day and never left again.
His last girlfriend had left a lot of damage behind her so the next 6 -12 months required a lot of emotional investment from me,into him. It took my mind off the other issues that were going on plus i was SO happy that my mood swings mostly evened out (well,it seemed that way to me anyway).
I had stopped going to the therapist because the things he was telling me didnt seem to fit right and i didnt want to be medicated.
Manchild and i had also made a pact to stop the drinking (mostly a sacrifice on my part since he usually drove so didnt drink) and he told me that the nurofen that i was still guzzling (to cope with the stomach pains) actually caused stomach pain if you took too many and on an empty stomach (both things that i did).
I stopped taking the Nurofen cold turkey (which was a bit hellish after having them daily since 2001) and my stomach pain and bloating did ease up quite a bit.
Around this time the nausea also kicked up another notch and i started losing weight (which i was thrilled about at the time).I was still always hungry but the weight started dropping off (about bloody time,i thought).
I was tired all the time,mostly manchild would drop me at work and pick me up so i wasnt walking anymore.
We would sit down to watch a movie in the evening and i would fall asleep- it was crazy,i would be fighting to force myself to stay awake but every evening i would be asleep on the sofa at 8pm (or whenever it was).
I was 29 and just figured i was getting old.

Pre disgnosis

I've had quite a few people ask me how life was before the diagnosis so i thought i might try and tackle that- It will probably take me a few entries since I'll be trying to cover 10 years worth of my life (and no doubt forgetting half of it along the way ..) but here goes-

When the doctors at the hospital first told me that the cancer had been in my body for approx 10 years,everyone was stunned and shocked except me.
With hindsight i can almost pinpoint the day in 1999 that i first noticed that things were going a bit wonky with my body. Unfortunetly for me it was with my bowels and ,heavens above, there was NO way i was planning to talk or let on to anyone that there was something strange about my toileting habits!!
To put it simply - before this time i had never paid any attention to my bowels,they had done their thing and i let them get on with it!. Then i started noticing that i felt really ill and nauseous when i needed to 'go' followed by the realisation that i was only going every few days (which,i figured, was why i was feeling ill).
So my first trip to the GP happened around this time. I got a virtual pat on the head and a script for Metumucil (which i have to admit i didnt take) and told to eat more fruit and veges and get more exercise (anyone who knows how much i used to walk should be laughing out loud by now!) .

I went home miffed,vowing not to waste my money on anymore GP visits (little did i know what the future held!).
Slowly things got worse,i was single by this stage so there wasn't anybody around to notice what was going on with me and i did a damn good job of hiding it. I had frequent stomach pains and i started planning my walking routes around public toilets as i wouldn't be able to have a bowel motion for days and then would suddenly have to go right NOW.
It seems crazy writing this all out - how many warning signs did i need?!!! But please keep in mind that i'm covering a 10 year time frame and i did go to MANY gp's and came away being told that i suffered from cronic constipation so i thought it was something that i would just have to learn how to manage.

In 2001 a close friend and i moved down to Christchurch for a while- i had secretly hoped that a change of scene and lifestyle would clean up my body a bit but no such luck. I was using exercise to 'regulate' myself  at this point and had put on quite a bit of weight,going for long walks at nighttime. I remember noticing that i was finding physical activity much more tiring than it used to be but i just put it down to drinking too much and staying up too late.

In 2002 i moved back to Wellington for work,temporarily at first and then permanently as the windy city worked it charms on me (like it always does!). I got into a new relationship and was generally pretty happy with things but was really feeling the strain of trying to keep how i was feeling and what my body was doing a secret from the Man of the Moment (MrS).
I remember eating one evening and having to go and lie down because i was feeling so ill- this is pretty much where the constant nausea starts. Nausea that was just there all the time.
I largely ignored it as much as i could - i had been treated for anxiety for a number of years when i was 18 and the major side effect of that was that i stopped eating and lost 2 stone in a matter of weeks. Because of this i was conditioned to food often making me feel ill and coached myself to believe that it was just a response to thoughts in my head rather than actual true feelings of illness.

I went on a crazy health kick after the nausea started. I stopped drinking, eating sugar, any kind of takeaways  and processed foods and put myself on Dr Sandra Cabot's Liver Cleansing Diet. Lots of roughage,LSA and natural liver cleansing foods. I cut out wheat, Gluten,sugar, salt....nearly everything! And stayed off it all for over two years hoping that that would cleanse out whatever bad foods were blocking me up.
I started drinking Psyllium husks mixed with water (ewwww) and Aloe vera juice (ewwww ewwwww) and various other 'miracle' cures but no joy. Looking back on this stage of my life i think i must not have been a very fun person to know. I was ashamed of my weight,ashamed of my body's behaviour and a bit crazy in the head about my eating habits. I was ABSOLUTELY determined that i could control what was happening to me (and change it) by sticking with the changed lifestyle plan.
By this stage i had seen at least one more doctor (i went to different doctors each time so that i could get an unbiased consultation) and had the same evaluation so i was SURE that it was something that i was doing wrong that was causing these issues.
I think that deep down i thought my body was punishing me for starving it for so many years in the past - seems like crazy talk now but thats what i thought.

Slowly the eating habits got more and more extreme-
I knew about irritable bowel syndrome and this seemed to tick a lot of the boxes about what was happening to me so i tried to incorporate the tricks for managing IBS into my lifestyle as well.
i ate lots of tuna and peas and LSA. LSA on everything! Heaps of it on breakfast, lunch and dinner.And lots of tuna. And lots of peas! i tried not to block myself up with any carbs but i still wasnt losing any weight or feeling any better.
I didnt like to see any of my old friends because i felt like a old worn out shell of the fun, life loving person that i had been.
I remember running into Manchild on the street during this time (us both dating other people at the time) and being MORTIFIED that he had seen me (AND it was that daggy period when sweat pants were actually COOL! Oh the shame!!!) bloated and blotchy skinned. He remembers the incident also and says he was mortified that i had ignored him and then he wondered if it was actually me because i looked and acted so differently than when he had last seen me.
He summed it up nicely. i felt like a was a completely different person than i used to be too.

I'm loving the oncoming Christmas rush,and especially loving the excuse to think outside my box and spend a bit of time gathering some unique NZ gifts for my oldest school friends kids.
Its been a privilage to be with these friends of mine during the (primary in one case!) school days,post school 'what am i going to do with my life?' days, getting miffed that they found their soul mate and i hadnt yet days (got over it!), marriage, , miscarriages, longing for kids, relationships trials, easy pregnancies ,hard births and finally the much anticipated babies. In the midst of all that drama were many many many happy times,discoveries about ourselves and life and the realisation that we were the kind of friendship that was going to be hard to get rid of.

I read a great quote that made me think of writing this post.It goes:
'Friends are like walls.Sometimes you lean on them and sometimes its enough to know they are there'.Which is certainly true in my life.
 Although they both live overseas now, i love waking up in the morning and finding unexpected texts or emails from a different time zone and knowing that on the other side of the world someone had been thinking about me.
I love that that it takes a little bit more effort to keep in touch but that its worth it.
I love that we all understand that life is busy and that it goes without saying that we all think of each often even if we dont have time (or energy) to sit and write HUGE letters like we used to.
I love being part of watching my honorary nieces and nephew growing and being able to justify spoiling them mercilessly because i cant be there everyday.
i love that my friends (M and M,confusingly) remember me how i was not how i am and i hope they know that they will never ever grow up in my memory.

 

Every year as Christmas approaches i wish that i could be with them and their families on Christmas morning and miss them terribly when i'm not. But I've got my sights fixed on it so its going to happen one day,dragging Manchild and Missk across the oceans with me for a white Christmas in France or a not-so-white Christmas in Geelong just so they can watch me and my much loved soul-sisters make spectacles of ourselves.
It will happen.
But til then,lovely ones (and My brothers,wives and their gorgeous,divine,wonderous children overseas) we think of you everyday.

In for a visit with the oncologist at the hospital today and they gave me the brilliant news that my bloodwork from last week came back really well and the most current round of tests were all fine.I've lost a bit of weight but not enough to really concern them. My next MRI is in March,colonoscopy in Feb and 2 more hospital visits this month.

When i went into the hospital it was a warm but overcast day and my stomach was churning.
When i came out all the clouds had cleared away,blue skies with hot sun- and i felt as light as air.
The world looked brighter,and smelt fresher than it had an hour ago.
I came home brimming with abundant good feeling and looked around our home at all the amzing blessings this spring day.
Here's a few that i found:
(I'm afraid,it being spring and all there is a general gardening theme!)

MY herb garden.I've wanted one for as long as I've been cooking and its flourishing in the original laundry tubs around the side of our house

We have been waiting and waiting and waiting for the mystery tree in our backyard to flower. And finally it is.And they are PURPLE.absolutely stunning. I cant wait til the whole tree is in bloom.

Ahhh spring. Nothing like witnessing new (bean ) growth

Peas. In our vege garden. mmmmm peas fresh from the pod.(I'm not supposed to eat them anymore- but who can resist peas??)

we lucked out amazingly by welcoming a new kitten into our home who already feels as if he has been part of our family forever. Meet our gorgeous, smoochie, purry , wonderfully lovable Mr Slinky,or the Slinkster as he's more generally known

And i cant possibly end this post without a nod to recent Guys Fawkes night. Fun fun fun. xx

I'm sure that whoever may be reading this might've noticed - the last month has been rather up and down.
I've just come to the end of week 5 of having UTI's every single week plus worrying (over nothing) about the pre assessment and also having been commissioned to do a blanket which had turned into a nightmare to find a fabric and design that suited everyone involved.
Add in my darling MissK having a few restless nights sleep and the general Christmas pick up in social life/organising Christmas presents for overseas posting etc etc and most days i felt like i was walking through treacle and not getting anywhere!

Well today I've had enough! I'm forgetting the last 4 weeks and starting on a lovely clean crease free page. And the first thing i am doing (because being a woman,i have emotions tied up in all sorts of items around our home) is taking apart the first blanket that i ever made (missK's winter duvet) and sewing it properly.
The reason that I'm doing this is because i think of that duvet a bit like my illness- When i first made it i was SO pleased and proud that i stuck it out and finished it. I could hardly believe what i had done- never mind the ugly corners,uneven stitches and bunching at the back.
Same with my chemo treatment- i was SO pleased that i had met the challange head on and followed it through right to the end.
But now....
Now everytime i look at it i think 'duvet:i love you but really....'
Which is what i found myself doing over this last month - no longer thinking  'WOW i did that.How strong and fabulous am i ?' but instead 'sheesh....life:i love you but really...'

So my game plan is to unpick the duvet, add fresh wadding, fresh backing with letters handstitched in that say 'we heart you kaylin' (which is what i always wanted to do with it but was too impatient last time round) and make it a little larger so it fits her bed properly.
I'm hoping that this project will be enough to alter my mindset a little so that once again i can look at it and think 'Oh yes, I did that, isnt life grand' instead of just noticing the things that weren't the way i wanted them to be.
Add in a couple of decent nights sleep and I'll be away laughing.

So far I've completely unstitched the topper - which took a whole day and evening. I'm not rushing,I'm just doing it perfectly (Perfectly being :to the best of my abilities).

waiting for its new lease of life

oh and to all the lovely people who have asked me about how the pre assessment went: It went fine. Apart from finding out how many days in advance i had to stop eating (hmmm) and them trying to schedule it on missK's birthday (i said thanks but no thanks,pick another day please). So the procedure will be done at the beginning of Feb- I plan on putting it out of my head and enjoying Christmas,my birthday,Manchilds birthday,New years and Missk's birthday before i even vaguely think of it again!!

Yep, life can be hard.
Yep, life can be a drag...
But only if i LET it.