how easy it is to forget or not worry about posting when things are going swimmingly and the outlook is positive all round.
Now there is a lot to catch up on - and on a 'one of those days' kind of days, when everything becomes a bit too overwhelming for what ever reason and the tears begin to flow.
In fairness to myself, it has been 2 or so months since a melt down similar to what I experienced this afternoon, however I will be glad beyond gladness if it stays away again for just as long.
Since ending the 6 Chemotherapy cycles mid-April (including a drug brand change for cycles 4 & 5 and allergic reactions that followed suit - cycle 6 was back to the old brand sourced from somewhere else!) I have been enjoying my freedom from drug timetables and hospital appointments, I have been immersed in my part time teaching and the never-ending tasks involved with studying for my degree upgrade, we have been planning our wedding and with only 16 weeks to go have begun a last ditch effort to lose some weight and get a bit fitter... high hopes I know, but after a week I'm winning the race with a 2kg loss :o)
So we've been pretty busy, the house renovation has been signed off and a fantastic re-valuation has been issued so we will be able to re-finance and sort out some bills in the very near future.
Think we might have talked Mr Oncology into letting me drive a bit earlier than the previous time-frame of April-October next year... we've broken him down and he said if I keep behaving that he might look at Christmas time - Yay!
Things have been looking up - really up - and I have been feeling fantastic and in great spirits, on top of things in the game of life and very happy.
Toby has celebrated his 7th Birthday, and a couple of days ago I turned 31... here's hoping this year is better than number 30 - in a strange way the brain cancer thing still feels so surreal, like my 30th year was a GAP year out of my life... I'd like to slot back in to my previous being now though please, I've had enough and would like to get off the bus.
This afternoon brought about a follow up from Dr Wicks - a consultant from Wellington Neuro-surgical unit. Although we'd never met him on our previous visits, it was nice to finally put a face to the name and get some answers to a few questions. The whole experience was depressing, and this was what began the melt...
There was no bad news, but there was no great news either. He was very attentive and answered Tim's questions fully and gently. He was clear about the next steps should there be a recurrence, however didn't tell us anything that I didn't already know... I perhaps was unreasonable to hope for some new breakthrough he had saved just for me, or a new wonder-drug that wipes the bastard out good and for all. Nothing new on the treatment horizon to report, no cure....yet. I can only hope that by adding the concept of yet, will miraculously align the planets in the right way that some very clever scientist will find something with my name on it, and rush to my door to test it out on me. Hospitals are depressing and I hate them... the more I am required to attend the more my hate develops.
Repeat scan due early August, meet again with Neurosurgery 22nd August...prayers and fingers crossed until then please!
Have been reading and researching about cannabis oil and how it seems to be a miracle aid for people suffering from cancer - I hate the term suffering because I'm not - for people kicking the shit out of cancer, and apparently it helps. Something to do with the cannabinoids in the oil that kill off tumour cells. You don't even have to smoke it - although I would if I needed to! Now to friendly myself with somebody in the know... gotta try the hemp oil, it can't make me high and I doubt it can do more damage than the nasty if it decides to try and come back!
My Tim has been amazingly strong today, propping me up when I needed to be held - he just knows when I need him and I can't wait to be his wife - I'm just so terribly gutted that all this drama has happened, I never intended for our life together to be this way.
I am tucked up in bed, ready to hit the pillow and already I am looking forward to tomorrow...I know it won't necessarily be better, it will just be different - I will be pleased to wake and grateful for the small things.
The big thing for me is support, and this became apparent in the multitude of birthday wishes and messages I received. Even though we may not be in contact often, it's the little messages from friends, family and supporters that pop up out of nowhere and make my day.
Arohanui xxx
Wednesday, 13 June 2012
Thursday, 9 February 2012
What a week...
Believe it or not, this is take two of THIS blog... I wrote heaps on Wednesday night and lost the lot... I've been too pissed off to start all over again but as it's Friday I'll give it a go.
MRI day (Wednesday) progressed slowly - the nerves kicked in pretty much as soon as I woke up. I don't think my nerves have anything to do with the machine any more, but the process of getting a line into my arm for the first time in 5 months was a little daunting... I remember the very last time in that very same bed the Dr finally getting the equipment in after quite a process and apologising for the 'blood bath'. Now those that know me, know that even after all this I do not do blood particularly well so this was what the butterflies in my tummy were reacting to. This and I had medicated myself a little too late so wasn't feeling as calm as I could have!
The wonderful lady (technician? I'm not sure what to call her!) asked if she could have a look first and have a try as practice was the only way she would get better. Of course I let her have a try, it was unfortunately unsuccessful so the Dr was called - as we thought may happen - hence the appointment on the day when he was in-house! Lovely Dr was also unsuccessful...so he called in the big guns... an ultrasound machine from upstairs! This was a fascinating distraction for me, I got to watch the black and white screen (and consequently the vein rolling out of the way of the needle) while the Dr tinkered away at my arm. I have never had this experience before but it has been written on my notes as THE way it will be done from now on... Dr and Ultrasound!
My scan was scheduled for 2:45 but due to me being difficult to 'stick' another patient jumped the queue and we left at 4:30... a long afternoon but the staff were all wonderful and they remembered me from the day after I was admitted - when I needed the 'jungle-juice' to get me into the machine. The scan has become the easy bit - pre and post contrast, Tim signed his life away and came in with me again. I don't feel like I need him there for my anxiety anymore, but it's nice to have someone to pull funny faces at and pass the time!
The next duty required of me that week was bloods... yay! Friday was the day, Feilding Medlab was the place... unfortunately my veins were so damaged from MRI day, and the others (hands, side of wrists) had gone into hiding. I decided to sit up on the bed this time, thought I'd be brave (as I could watch the whole thing lying down last time) and challenge myself a little further! I managed to sit up for the whole thing until she gave up and decided to pass me on to the other lady... then I began to feel a bit woozy! All in all it was two ladies and 7 tries but they got blood!
The long weekend was pretty quiet for me, Tim was at the Sevens with work so Toby and I hung out around home. It was nice, but would have loved to be able to drive and go visiting or something. My cousin came to stay with us for some extra company, and in case we needed to go anywhere - my family are wonderful taxi drivers xx
With results day looming for Tuesday, neither of us slept particularly well Monday night and were pretty tired to begin the day. For a day that dragged on, we were very nearly late for our appointment at Oncology. We had a small wait sitting in the waiting area so I grabbed a magazine to flick through to curb my nervous energy... wasn't reading it, just giving myself something else to do! It was really obvious how much my hands were shaking holding the pages so that didn't last long, but then we were called. After exchanging pleasantries and a quick update of how the last chemo cycle went for me the Dr said that he'd had a chance to look over my scan and it was 'perfect'. The look of relief on Tims face was a huge relief to me, and I could have jumped off the chair - but didn't :o)
He went on to say that there is no evidence of residual disease, however his nurse was quick to point out that it didn't mean that there WASN'T anything there - it could just be too tiny for the scan not to pick up at this stage. I was happy with that... I figure if the scan couldn't pick it up then it's possibly too small to actually worry about anyway! Tim asked for clarification on how good the scan was and was told that at this stage in treatment it was the best they have seen - yay for me! I was (am) super excited about that result - a huge weight off my (our) shoulders for now. "If there was an element of beauty in oncology - this would be it" Said Dr, pointing to the scan images on the screen "You have a beautiful brain".
Happy with that.
He went on to tell me that chemo would be postponed due to a low platelet count... apparently they don't issue the prescription unless the count is above 100 and my count was 69... previously I was 2-300 so it was quite a dramatic drop. I was reassured that it was nothing to be worried about, that I was in no danger (just to watch my bruising and bleeding!), and that they wouldn't infuse any until my count got below 10.
So more bloods were prescribed for a weeks time (yay) and time off chemo until the count is satisfactory.
That ends the cancer update.
We have been busy at home getting things ticked off the list for permit-approval at the end of the month... next job is painting the house and getting the digger in for a septic tank tickle-up. We'll see how much we get done this weekend!
Next weekend is my graduation which I'm trying hard not to think too much about...I'm excited to finally be there and to be able to graduate with my actual class, but the nerves are setting in for the speaking part... haven't looked at it at all this week... blamed it on having too much else going on but really just wanted it to go away! I'll dose myself up with some anti-anxiety stuff and I'm sure I'll be as cool as a cucumber... cross fingers anyway.
My Degree Upgrade course starts on Monday... might need to dose myself up for that too... think I might be slightly mad to be going back to more study but once it's done I think that will be it... unless of course I find something else to do!
Toby has settled back into school without too much drama - the wrong stationary list probably having been the worst of it. He's loving his new teacher and the new tasks and different homework... swimming every day tires him out too so we are grateful for the hot weather (today being the exception to that of course).
We are gearing up for Relay for Life this March - really looking forward to being there in the atmosphere... it's such a super special place to be, and to share it with super special friends and family will be the icing on the cake.
Thanks to all my supporters for their prayers, thoughts, well-wishes, and positive vibes coming my way... all these, plus my amazing family and friends, are what keeps me 'up' high and trucking along...
MRI day (Wednesday) progressed slowly - the nerves kicked in pretty much as soon as I woke up. I don't think my nerves have anything to do with the machine any more, but the process of getting a line into my arm for the first time in 5 months was a little daunting... I remember the very last time in that very same bed the Dr finally getting the equipment in after quite a process and apologising for the 'blood bath'. Now those that know me, know that even after all this I do not do blood particularly well so this was what the butterflies in my tummy were reacting to. This and I had medicated myself a little too late so wasn't feeling as calm as I could have!
The wonderful lady (technician? I'm not sure what to call her!) asked if she could have a look first and have a try as practice was the only way she would get better. Of course I let her have a try, it was unfortunately unsuccessful so the Dr was called - as we thought may happen - hence the appointment on the day when he was in-house! Lovely Dr was also unsuccessful...so he called in the big guns... an ultrasound machine from upstairs! This was a fascinating distraction for me, I got to watch the black and white screen (and consequently the vein rolling out of the way of the needle) while the Dr tinkered away at my arm. I have never had this experience before but it has been written on my notes as THE way it will be done from now on... Dr and Ultrasound!
My scan was scheduled for 2:45 but due to me being difficult to 'stick' another patient jumped the queue and we left at 4:30... a long afternoon but the staff were all wonderful and they remembered me from the day after I was admitted - when I needed the 'jungle-juice' to get me into the machine. The scan has become the easy bit - pre and post contrast, Tim signed his life away and came in with me again. I don't feel like I need him there for my anxiety anymore, but it's nice to have someone to pull funny faces at and pass the time!
The next duty required of me that week was bloods... yay! Friday was the day, Feilding Medlab was the place... unfortunately my veins were so damaged from MRI day, and the others (hands, side of wrists) had gone into hiding. I decided to sit up on the bed this time, thought I'd be brave (as I could watch the whole thing lying down last time) and challenge myself a little further! I managed to sit up for the whole thing until she gave up and decided to pass me on to the other lady... then I began to feel a bit woozy! All in all it was two ladies and 7 tries but they got blood!
The long weekend was pretty quiet for me, Tim was at the Sevens with work so Toby and I hung out around home. It was nice, but would have loved to be able to drive and go visiting or something. My cousin came to stay with us for some extra company, and in case we needed to go anywhere - my family are wonderful taxi drivers xx
With results day looming for Tuesday, neither of us slept particularly well Monday night and were pretty tired to begin the day. For a day that dragged on, we were very nearly late for our appointment at Oncology. We had a small wait sitting in the waiting area so I grabbed a magazine to flick through to curb my nervous energy... wasn't reading it, just giving myself something else to do! It was really obvious how much my hands were shaking holding the pages so that didn't last long, but then we were called. After exchanging pleasantries and a quick update of how the last chemo cycle went for me the Dr said that he'd had a chance to look over my scan and it was 'perfect'. The look of relief on Tims face was a huge relief to me, and I could have jumped off the chair - but didn't :o)
He went on to say that there is no evidence of residual disease, however his nurse was quick to point out that it didn't mean that there WASN'T anything there - it could just be too tiny for the scan not to pick up at this stage. I was happy with that... I figure if the scan couldn't pick it up then it's possibly too small to actually worry about anyway! Tim asked for clarification on how good the scan was and was told that at this stage in treatment it was the best they have seen - yay for me! I was (am) super excited about that result - a huge weight off my (our) shoulders for now. "If there was an element of beauty in oncology - this would be it" Said Dr, pointing to the scan images on the screen "You have a beautiful brain".
Happy with that.
He went on to tell me that chemo would be postponed due to a low platelet count... apparently they don't issue the prescription unless the count is above 100 and my count was 69... previously I was 2-300 so it was quite a dramatic drop. I was reassured that it was nothing to be worried about, that I was in no danger (just to watch my bruising and bleeding!), and that they wouldn't infuse any until my count got below 10.
So more bloods were prescribed for a weeks time (yay) and time off chemo until the count is satisfactory.
That ends the cancer update.
We have been busy at home getting things ticked off the list for permit-approval at the end of the month... next job is painting the house and getting the digger in for a septic tank tickle-up. We'll see how much we get done this weekend!
Next weekend is my graduation which I'm trying hard not to think too much about...I'm excited to finally be there and to be able to graduate with my actual class, but the nerves are setting in for the speaking part... haven't looked at it at all this week... blamed it on having too much else going on but really just wanted it to go away! I'll dose myself up with some anti-anxiety stuff and I'm sure I'll be as cool as a cucumber... cross fingers anyway.
My Degree Upgrade course starts on Monday... might need to dose myself up for that too... think I might be slightly mad to be going back to more study but once it's done I think that will be it... unless of course I find something else to do!
Toby has settled back into school without too much drama - the wrong stationary list probably having been the worst of it. He's loving his new teacher and the new tasks and different homework... swimming every day tires him out too so we are grateful for the hot weather (today being the exception to that of course).
We are gearing up for Relay for Life this March - really looking forward to being there in the atmosphere... it's such a super special place to be, and to share it with super special friends and family will be the icing on the cake.
Thanks to all my supporters for their prayers, thoughts, well-wishes, and positive vibes coming my way... all these, plus my amazing family and friends, are what keeps me 'up' high and trucking along...
We are unstoppable and I love you all xxx
Monday, 30 January 2012
5 months.
This is take two on today's blog... lost the first edition in cyberspace...
Today marks five months since my craniotomy.
When I reflect on how much life has changed since then, it is just about hard to believe it was any different. Apart from not driving, I feel back to my old self. I've gotten used to not having a drink occasionally, used to having incredibly short hair, and used to the treatment schedule that I have been allocated. I have become used to visiting my oncologist no longer fearing bad news every time as I did in the beginning.
My family has closed ranks and adjusts their schedules to accommodate my own - the best kind of taxi service one could hope for - I am truly grateful.
As a family we are more considerate and appreciative of one another, we know that it is not just my journey but a journey that affects those nearest and dearest to me. Their well-being is paramount as I lean on them during the tough days when my own is compromised.
We hug each other and say 'I love you' much more than pre-diagnosis and I know I am incredibly lucky to have such a close-knit family.
Since my last entry I have completed my Diploma course and await graduation (17th Feb) with excitement and nervousness... I've been nominated as class representative to say a few words on behalf of the class. Everyone that knows me knows I'm NOT a public speaker, but after the last few (5) months it has definitely been downgraded in terms of scariness so I'll give it a go!
We have recently returned from a whirlwind trip up North... We found a map that had the twin coast highway tour and did that - with a bus trip to Cape Reinga thrown in too. Was a great celebration as I had finished that cycle of treatment, and found out my last two assignments had passed and I was finished my study!
Tomorrow I am due to have my first MRI scan since I began treatment...I am fairly confident that there will be no surprises, I feel fantastic and have had no symptoms so I'm not expecting bad news. Sure, I'll be nervous tomorrow and until I get results on the 7th if not sooner, but I have a feeling that everything will be okay. The part I'm not looking forward to is having the line put in my arm... it's never an easy job to get one in me and they've booked me especially on a Wednesday when there is a Dr in-house to do it... goodie...
I will post again with any news I discover, until then, love much, laugh often and take care of those close to you.
Arohanui xx
Today marks five months since my craniotomy.
When I reflect on how much life has changed since then, it is just about hard to believe it was any different. Apart from not driving, I feel back to my old self. I've gotten used to not having a drink occasionally, used to having incredibly short hair, and used to the treatment schedule that I have been allocated. I have become used to visiting my oncologist no longer fearing bad news every time as I did in the beginning.
My family has closed ranks and adjusts their schedules to accommodate my own - the best kind of taxi service one could hope for - I am truly grateful.
As a family we are more considerate and appreciative of one another, we know that it is not just my journey but a journey that affects those nearest and dearest to me. Their well-being is paramount as I lean on them during the tough days when my own is compromised.
We hug each other and say 'I love you' much more than pre-diagnosis and I know I am incredibly lucky to have such a close-knit family.
Since my last entry I have completed my Diploma course and await graduation (17th Feb) with excitement and nervousness... I've been nominated as class representative to say a few words on behalf of the class. Everyone that knows me knows I'm NOT a public speaker, but after the last few (5) months it has definitely been downgraded in terms of scariness so I'll give it a go!
We have recently returned from a whirlwind trip up North... We found a map that had the twin coast highway tour and did that - with a bus trip to Cape Reinga thrown in too. Was a great celebration as I had finished that cycle of treatment, and found out my last two assignments had passed and I was finished my study!
Tomorrow I am due to have my first MRI scan since I began treatment...I am fairly confident that there will be no surprises, I feel fantastic and have had no symptoms so I'm not expecting bad news. Sure, I'll be nervous tomorrow and until I get results on the 7th if not sooner, but I have a feeling that everything will be okay. The part I'm not looking forward to is having the line put in my arm... it's never an easy job to get one in me and they've booked me especially on a Wednesday when there is a Dr in-house to do it... goodie...
I will post again with any news I discover, until then, love much, laugh often and take care of those close to you.
Arohanui xx
Tuesday, 10 January 2012
$3360.00
That is how much I am grateful. Grateful because that is how much my drugs for this week WOULD have cost me if there was no subsidy in New Zealand. 5 days, 20 capsules, $168 per capsule. I was pretty stoked to just be handing over my $3 dispensing fee.
If the wonderful Dave Bowman (Million Dollar Tumour - Doco) hadn't have lobbied the drug company to have this medication subsidised I would well and truly be up shite creek without a paddle.
The first day of the new higher dosage went well... I feel pretty good, and surprised that there was no more effects noticeable than the last lot. Come the end of the week it may change completely but for now I feel no different.
I've been pottering away at my last two assignments, as part of the deal of being able to graduate with my class in February I needed to complete as much of them as I can and hopefully get a pass... I can honestly say that it was a huge disappointment to be told to catch up on it all given my illness, but I'm pleased that I still have to work to pass like the others did.
I completed the enrolment form for the degree upgrade beginning in February this year - 10 months part time that will end me up with a Degree which I will be super stoked about! Along with the Teacher Registration over the next two years, I think I'll be busy. All of that AND planning for our wedding on the first weekend in October and this year will be jam-packed.
Had a lovely catch up with some friends (and a blast from the past) on Saturday... could have stayed WAY longer but the catch with not driving is knowing that you are on someone elses clock so Ladies, we will have to do it again soon!
The no driving thing... thought I'd take a punt and test the waters at oncology yesterday. Its an absolute flat out NO
Him :"And I suppose you want to talk about no drinking too?"
Me: "I'm happy not to drink ever again if you could just let me drive"
Him: "You just have to accept the things in life you cannot change"
Me: "Then I might be need to drink or you're gonna send me to the loony bin". which didn't go down well!
It was all with a smile on his face and he mumbled something about me being a trier and how much change I just need to accept... he wasn't too cross cos my bloods were 'perfect' and I am doing okay so was a bit of a star pupil really! We thawed him out in the early days and got him smiling and joking with us... he probably needs a break after we've been, but I figure he's got a serious enough job, why not have a bit of a giggle while we can?!
In order to drive there is nothing I need to 'prove' at this stage... I need to finish all my treatment and then wait a year and a half apparently which will SUCK, but maybe if I keep doing well and not seizing or drinking then he might let me... maybe, but I'll not hold my breath.
Have been terribly brave in the last two days... didn't wear my wig up to hospital yesterday, then at the skate park in Palmy, then I went into a really busy 4 square. Today we did the groceries and I walked around Pak'n'Save for a good couple of hours with a nude nut... liberating! It's not as nude as it used to be cos the hair is growing back in places, but it makes me feel good to see that people don't stare as much as I thought they might :o)
I leave you for a few days of hopefully no more rain or wind - and no sickies for me!
Love and light and fluffy goodness xxx
If the wonderful Dave Bowman (Million Dollar Tumour - Doco) hadn't have lobbied the drug company to have this medication subsidised I would well and truly be up shite creek without a paddle.
The first day of the new higher dosage went well... I feel pretty good, and surprised that there was no more effects noticeable than the last lot. Come the end of the week it may change completely but for now I feel no different.
I've been pottering away at my last two assignments, as part of the deal of being able to graduate with my class in February I needed to complete as much of them as I can and hopefully get a pass... I can honestly say that it was a huge disappointment to be told to catch up on it all given my illness, but I'm pleased that I still have to work to pass like the others did.
I completed the enrolment form for the degree upgrade beginning in February this year - 10 months part time that will end me up with a Degree which I will be super stoked about! Along with the Teacher Registration over the next two years, I think I'll be busy. All of that AND planning for our wedding on the first weekend in October and this year will be jam-packed.
Had a lovely catch up with some friends (and a blast from the past) on Saturday... could have stayed WAY longer but the catch with not driving is knowing that you are on someone elses clock so Ladies, we will have to do it again soon!
The no driving thing... thought I'd take a punt and test the waters at oncology yesterday. Its an absolute flat out NO
Him :"And I suppose you want to talk about no drinking too?"
Me: "I'm happy not to drink ever again if you could just let me drive"
Him: "You just have to accept the things in life you cannot change"
Me: "Then I might be need to drink or you're gonna send me to the loony bin". which didn't go down well!
It was all with a smile on his face and he mumbled something about me being a trier and how much change I just need to accept... he wasn't too cross cos my bloods were 'perfect' and I am doing okay so was a bit of a star pupil really! We thawed him out in the early days and got him smiling and joking with us... he probably needs a break after we've been, but I figure he's got a serious enough job, why not have a bit of a giggle while we can?!
In order to drive there is nothing I need to 'prove' at this stage... I need to finish all my treatment and then wait a year and a half apparently which will SUCK, but maybe if I keep doing well and not seizing or drinking then he might let me... maybe, but I'll not hold my breath.
Have been terribly brave in the last two days... didn't wear my wig up to hospital yesterday, then at the skate park in Palmy, then I went into a really busy 4 square. Today we did the groceries and I walked around Pak'n'Save for a good couple of hours with a nude nut... liberating! It's not as nude as it used to be cos the hair is growing back in places, but it makes me feel good to see that people don't stare as much as I thought they might :o)
I leave you for a few days of hopefully no more rain or wind - and no sickies for me!
Love and light and fluffy goodness xxx
Saturday, 31 December 2011
Happy New Year!
I took great pleasure last night in giving 2011 the big finger send off... I am looking forward to a relatively stress-free year with excellent health, minimal hospital visits and not too much vomit (from treatment of course!).
Coupled with making the most of family time, taking heaps of photos and enjoying the good days, I want to get camping and see more of this beautiful country we are blessed to be living in.
New years for us was a pretty quiet affair, we had the use of a cute little batch (and again tonight) which provided a change of scenery from the tent at Mum and Dad's place for 3 boys with cabin fever from all this rain.
My mindset and energy have dramatically improved from my last blog, thank goodness. I'd had enough and was feeling pretty low, but I want to thank my friends for their messages of support - you know who you are and big loves to you :o)
The 9th of January will be upon me soon enough, and I'm not looking forward to it one little bit... I guess in the grand scheme of things a week or so out of every month is a mere blip compared to others who perhaps feel crook all the time. Every day is a day closer to 'S-day' the day they are ready to scan me - end of Feb, early March perhaps. This will bring about a whole new set of feelings, emotions and stresses, but only until I get the results that show that there's nothing to worry about.
In other exciting news, the hair that fell victim to my radiotherapy treatment is growing back... mostly. I'm potentially in for a permanently higher forehead than I began with, but through the top of my head and my 'monk' bald patch at the back is itchy as buggery and I'm being told it looks like chicken skin... spunky I know but is the hair waiting to come through. Yay for me!
Take care, stay warm and dry and enjoy the first few days of our new year xx
Coupled with making the most of family time, taking heaps of photos and enjoying the good days, I want to get camping and see more of this beautiful country we are blessed to be living in.
New years for us was a pretty quiet affair, we had the use of a cute little batch (and again tonight) which provided a change of scenery from the tent at Mum and Dad's place for 3 boys with cabin fever from all this rain.
My mindset and energy have dramatically improved from my last blog, thank goodness. I'd had enough and was feeling pretty low, but I want to thank my friends for their messages of support - you know who you are and big loves to you :o)
The 9th of January will be upon me soon enough, and I'm not looking forward to it one little bit... I guess in the grand scheme of things a week or so out of every month is a mere blip compared to others who perhaps feel crook all the time. Every day is a day closer to 'S-day' the day they are ready to scan me - end of Feb, early March perhaps. This will bring about a whole new set of feelings, emotions and stresses, but only until I get the results that show that there's nothing to worry about.
In other exciting news, the hair that fell victim to my radiotherapy treatment is growing back... mostly. I'm potentially in for a permanently higher forehead than I began with, but through the top of my head and my 'monk' bald patch at the back is itchy as buggery and I'm being told it looks like chicken skin... spunky I know but is the hair waiting to come through. Yay for me!
Take care, stay warm and dry and enjoy the first few days of our new year xx
Thursday, 29 December 2011
I'm tired.
In fact I'm even tired of being tired.
An unforgiving tiredness has swept over me this last week... I've known nothing like it to possess my body before, and it's making me dread the next few months treatment.
Today is Tim's oldest boy, Izaac's 11th birthday. They've all gone into town to the skating rink as promised for a birthday treat... I couldn't even entertain the thought of doing something quite so energetic which is depressing beyond belief.
I've been told to expect it, but when it comes with a price tag of not joining in on fun stuff with the family, (and we all know I hate missing out on that stuff) you can freaken keep it.
So folks, not such a great day today - lots of things running through my head and not all of it is wonderful if I'm honest.
I'm trying not to give these thoughts too much air time in my already busy life, so I'll leave it there and endeavour to be back with you in a new frame of mind in a couple of days.
Christmas was lovely, the first year out of the many so far that we didn't have to travel. The weather was hot, the food delicious and the company was superior (and the afternoon nap necessary!). We had a lovely but unsuccessful long-line fish in the evening, with a bonfire on the beach - kiwi Christmas personified.
The rain today has kept us from the beach, but I am grateful that it has dropped the air temperature somewhat - I was getting a little over the heat... good old human nature - I'm sure we complain no matter what!
Enjoy new years, we've got a beach one planned - hope it's not too wet
Ka Kite xx
An unforgiving tiredness has swept over me this last week... I've known nothing like it to possess my body before, and it's making me dread the next few months treatment.
Today is Tim's oldest boy, Izaac's 11th birthday. They've all gone into town to the skating rink as promised for a birthday treat... I couldn't even entertain the thought of doing something quite so energetic which is depressing beyond belief.
I've been told to expect it, but when it comes with a price tag of not joining in on fun stuff with the family, (and we all know I hate missing out on that stuff) you can freaken keep it.
So folks, not such a great day today - lots of things running through my head and not all of it is wonderful if I'm honest.
I'm trying not to give these thoughts too much air time in my already busy life, so I'll leave it there and endeavour to be back with you in a new frame of mind in a couple of days.
Christmas was lovely, the first year out of the many so far that we didn't have to travel. The weather was hot, the food delicious and the company was superior (and the afternoon nap necessary!). We had a lovely but unsuccessful long-line fish in the evening, with a bonfire on the beach - kiwi Christmas personified.
The rain today has kept us from the beach, but I am grateful that it has dropped the air temperature somewhat - I was getting a little over the heat... good old human nature - I'm sure we complain no matter what!
Enjoy new years, we've got a beach one planned - hope it's not too wet
Ka Kite xx
Sunday, 11 December 2011
It's been fun.
Fun to pretend that all is well, and that I don't have this dreaded nastiness hanging over my head (no pun intended).
The break from treatment is over, tonight I begin phase two... a double dose of my chemotherapy pills for 5 days(of which the total cost of the drug is $2520... $168 per pill - thank goodness for subsidies!) per month. I have been told to expect more nausea and tiredness than last time - but hopefully only for the duration of the drug-taking - maybe a couple of days after.
I got growled at today by my Oncologist... I knew I would. Last week we had a wonderful send off into the big wide world having finished our three year stint of teacher training, we had a stay-over organised solely by our class, on a Marae in Dannevirke. It was a fantastic one night, two days of togetherness and a lovely way to finish (not quite, but more on that in a minute). Unfortunately for me, I burnt my arm quite badly on the Tuesday evening whilst helping to prepare dinner... by Saturday night just gone there was an infection spreading out over my arm so we hot-footed it to A&E for antibiotics... hence the growling (with a smile on his face, so not soo serious)! He told me I mustn't do 'stupid things' due to the impending immunity-bashing I was about to undertake. So sorry for accidentally burning myself Dr, how stupid of me...
On the bright side, my burn is looking much better, and the Dr decided not to postpone the treatment (which I had been worried about), on the understanding that if it gets worse when I begin treatment then I need to get back to him ASAP.
I am nervous about this week, another unknown. I know I was absolutely fine last time with the single dose, but I can't help but approach tonights first dose with some trepidation.
This break has been wonderful, my energy has mostly returned, I've been back to work, back to school, back to exercise and feeling really well. We've got some work done around the house ready for code of compliance and final sign of due in March, and the garden is coming along beautifully with a handful of strawberries and a few snow peas a day to quench my appetite for fresh produce!
My school has wound up for the Diploma girls, I'm so proud of them all for sticking through it and getting along with each other for the whole 3 years - I have two more assignments to go but will get them done, and I WILL graduate with my girls in Jan/Feb next year. I am grateful for their support and kindness through what has been a rocky few months, goes to show what an amazing class I was lucky enough to be a part of. We begin the 10 month degree upgrade in February, and I'll be ready to roll for sure.
As far as 'me' is concerned, I have good days and bad days but don't rely on the 'calm-me-down' pills as I used to... I get anxious about my fate, and am uneasy talking about the future as I really don't know what it will bring for me, or how much it will allow me to have. I remain thankful for the optimism and positive spirits of those around me, but at the same time I am anxious not to be a disappointment. I am, however, looking forward to a quiet Christmas with my family at the beach - with a decent no alcohol bubbles... any suggestions?!
Arohanui.
Love, light, blessings and thankfulness xxx
The break from treatment is over, tonight I begin phase two... a double dose of my chemotherapy pills for 5 days(of which the total cost of the drug is $2520... $168 per pill - thank goodness for subsidies!) per month. I have been told to expect more nausea and tiredness than last time - but hopefully only for the duration of the drug-taking - maybe a couple of days after.
I got growled at today by my Oncologist... I knew I would. Last week we had a wonderful send off into the big wide world having finished our three year stint of teacher training, we had a stay-over organised solely by our class, on a Marae in Dannevirke. It was a fantastic one night, two days of togetherness and a lovely way to finish (not quite, but more on that in a minute). Unfortunately for me, I burnt my arm quite badly on the Tuesday evening whilst helping to prepare dinner... by Saturday night just gone there was an infection spreading out over my arm so we hot-footed it to A&E for antibiotics... hence the growling (with a smile on his face, so not soo serious)! He told me I mustn't do 'stupid things' due to the impending immunity-bashing I was about to undertake. So sorry for accidentally burning myself Dr, how stupid of me...
On the bright side, my burn is looking much better, and the Dr decided not to postpone the treatment (which I had been worried about), on the understanding that if it gets worse when I begin treatment then I need to get back to him ASAP.
I am nervous about this week, another unknown. I know I was absolutely fine last time with the single dose, but I can't help but approach tonights first dose with some trepidation.
This break has been wonderful, my energy has mostly returned, I've been back to work, back to school, back to exercise and feeling really well. We've got some work done around the house ready for code of compliance and final sign of due in March, and the garden is coming along beautifully with a handful of strawberries and a few snow peas a day to quench my appetite for fresh produce!
My school has wound up for the Diploma girls, I'm so proud of them all for sticking through it and getting along with each other for the whole 3 years - I have two more assignments to go but will get them done, and I WILL graduate with my girls in Jan/Feb next year. I am grateful for their support and kindness through what has been a rocky few months, goes to show what an amazing class I was lucky enough to be a part of. We begin the 10 month degree upgrade in February, and I'll be ready to roll for sure.
As far as 'me' is concerned, I have good days and bad days but don't rely on the 'calm-me-down' pills as I used to... I get anxious about my fate, and am uneasy talking about the future as I really don't know what it will bring for me, or how much it will allow me to have. I remain thankful for the optimism and positive spirits of those around me, but at the same time I am anxious not to be a disappointment. I am, however, looking forward to a quiet Christmas with my family at the beach - with a decent no alcohol bubbles... any suggestions?!
Arohanui.
Love, light, blessings and thankfulness xxx
Tuesday, 15 November 2011
I'm on a break OK?!
This last couple of weeks has been busy! We have seen my radiotherapy sessions and chemotherapy treatments come to an end for now. Phase 2 begins on 12th December with double dose chemotherapy for 5 days a month, possibly for 4-6 months. For now I'm enjoying not being tied to a drug regimen with specific times for eating and not eating, this drug then, and that drug later... it gets a bit tedious!
As much as I enjoyed seeing the ladies (and the occasional man!) at Radiotherapy, I will enjoy just as much NOT to have to see them again, and this sentiment they fully understood and agreed with. The service (I guess it was a kind of service) there was unsurpassed, and they were a great team to lean on for advice or kind words when needed. They asked me to apply for a place in the "Look Good, Feel Better" programme which takes place next week - and I have since discovered that my bestie Nicci has been invited to attend too which I'm super excited about!
The end of these sessions have meant the end of the disastrous weekly blood tests... also for now, but towards the end I was a terrible trouble to get blood out of... standard practice for me is 3 tries in different areas and the last lot came from the back of my hand, very slowly!
My Oncologist spared me the very last weeks test as my counts were "better than good" and I had heaps of reserves to go on before anything would become amiss - Thank goodness for that! We do have a waiting game on our hands however. Unless anything symptomatic begins to show, I won't be scanned until February or March next year... just seems like such a long way away!
Tim and I had a nice evening at my end of year work function on Friday night - was lovely to see everyone and 'test' out my new hair - those who didn't know did just think that I'd had a haircut and colour... Success!!
I am feeling in a good space once again, and I have my beautiful Mum and family to thank for it. I was concerned about being 'sad' around them, but they have shown their true strength and support for me and for that I am eternally grateful.
I have started back at work - just two 4 hour stints per week to begin with, testing the energy levels and see how I go. the first day back was very very strange for me... it was the last place I was before all the hospital drama, AND it was the first time I had been away from any family member since the 25th August as they have been by my side the whole way. I spent the most part of that day in a panic and was exhausted at the end of it, but have since been back and thoroughly enjoyed myself - it won't take long to be back into the swing of things!
I also went back to school yesterday for a part day - it was lovely to see the girls again and help with the planning of our last phase of the programme - an overnight stay on a marae organised solely by our class, a huge undertaking but will be a bit of fun and a fitting finale to three years of hard slog!
I nearly feel brave enough to attack the remainder of my hair with scissors to tidy it up... I'm over the bald patchy 'mad professor' (thanks Patrick) look now and want to make it a bit more even. If Toby wasn't so concerned about me having no hair I'd take it all off and see what the shape of my head really looks like! I may still be able to talk him around to it, if I go shorter bit by bit we might get there!
On a bright note it has stopped falling out and my skin hasn't felt sore or dry or anything like they said might happen... maybe it's on its way?
I've been researching more on the natural treatments for my condition and have found a few rainbows - the Budwig Centre in Spain has some excellent testimonials on all types of 'c' and have been in touch via email to organise a more personalised service/programme which will be interesting to try - I've got so long to wait for a scan and I want to make sure I kick this thing in the guts (head?!) in the meantime.
We lost my wonderful Grandad yesterday, very sad but another blessing and we are thankful he is at peace. A massive seizure last week impaired his function badly and ruined half of his brain, he spent the week fighting but passed peacefully in the night. All the family have gathered from far and wide, and despite the circumstances it was wonderful to see all of them as it is so infrequently we are all together at the same time - typical of weddings and funerals though I think.
Toby and I are off to another stint at Karate tonight, and Cherie and I are off to Aqua aerobics tomorrow night - all this fun stuff has to be good for me somewhere along the line...
Until next time xxx
As much as I enjoyed seeing the ladies (and the occasional man!) at Radiotherapy, I will enjoy just as much NOT to have to see them again, and this sentiment they fully understood and agreed with. The service (I guess it was a kind of service) there was unsurpassed, and they were a great team to lean on for advice or kind words when needed. They asked me to apply for a place in the "Look Good, Feel Better" programme which takes place next week - and I have since discovered that my bestie Nicci has been invited to attend too which I'm super excited about!
The end of these sessions have meant the end of the disastrous weekly blood tests... also for now, but towards the end I was a terrible trouble to get blood out of... standard practice for me is 3 tries in different areas and the last lot came from the back of my hand, very slowly!
My Oncologist spared me the very last weeks test as my counts were "better than good" and I had heaps of reserves to go on before anything would become amiss - Thank goodness for that! We do have a waiting game on our hands however. Unless anything symptomatic begins to show, I won't be scanned until February or March next year... just seems like such a long way away!
Tim and I had a nice evening at my end of year work function on Friday night - was lovely to see everyone and 'test' out my new hair - those who didn't know did just think that I'd had a haircut and colour... Success!!
I am feeling in a good space once again, and I have my beautiful Mum and family to thank for it. I was concerned about being 'sad' around them, but they have shown their true strength and support for me and for that I am eternally grateful.
I have started back at work - just two 4 hour stints per week to begin with, testing the energy levels and see how I go. the first day back was very very strange for me... it was the last place I was before all the hospital drama, AND it was the first time I had been away from any family member since the 25th August as they have been by my side the whole way. I spent the most part of that day in a panic and was exhausted at the end of it, but have since been back and thoroughly enjoyed myself - it won't take long to be back into the swing of things!
I also went back to school yesterday for a part day - it was lovely to see the girls again and help with the planning of our last phase of the programme - an overnight stay on a marae organised solely by our class, a huge undertaking but will be a bit of fun and a fitting finale to three years of hard slog!
I nearly feel brave enough to attack the remainder of my hair with scissors to tidy it up... I'm over the bald patchy 'mad professor' (thanks Patrick) look now and want to make it a bit more even. If Toby wasn't so concerned about me having no hair I'd take it all off and see what the shape of my head really looks like! I may still be able to talk him around to it, if I go shorter bit by bit we might get there!
On a bright note it has stopped falling out and my skin hasn't felt sore or dry or anything like they said might happen... maybe it's on its way?
I've been researching more on the natural treatments for my condition and have found a few rainbows - the Budwig Centre in Spain has some excellent testimonials on all types of 'c' and have been in touch via email to organise a more personalised service/programme which will be interesting to try - I've got so long to wait for a scan and I want to make sure I kick this thing in the guts (head?!) in the meantime.
We lost my wonderful Grandad yesterday, very sad but another blessing and we are thankful he is at peace. A massive seizure last week impaired his function badly and ruined half of his brain, he spent the week fighting but passed peacefully in the night. All the family have gathered from far and wide, and despite the circumstances it was wonderful to see all of them as it is so infrequently we are all together at the same time - typical of weddings and funerals though I think.
Toby and I are off to another stint at Karate tonight, and Cherie and I are off to Aqua aerobics tomorrow night - all this fun stuff has to be good for me somewhere along the line...
Until next time xxx
Wednesday, 2 November 2011
Gameface...
is coming back.
From a rough few days, I am starting to see the turnaround.
For me I think the combination of coming down off the steroids, the passing of Aunty Jan (from cancer), and the tiredness of the treatment kicked in all in the same week and it was shite. I leaned on my family and friends for support, and it proved to me that my support networks are in full swing - ready and able to step into action if and when needed.
A little while back I a newspaper article found me (it really did) and I have kept it on my desk ever since. It was a list of rules and tips for life, written by a 90 year old. I can only hope to get to that age, but a few of the suggestions rang true for me this last week:
* It's okay to get angry with God. He can take it.
* Cry with someone. It's more healing than crying alone.
* Life isn't fair, but it's still good.
* Take a deep breath. It calms the mind
* No one is in charge of your happiness but you.
* When in doubt, just take the next small step.
* Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion.
Today is special.
* Time heals almost everything. Give time time.
* ALWAYS choose life.
The last one is so important to me as I fight this battle with all I've got. I've got sooo much to live for and I'm not going anywhere anytime soon thank you very much!
I have 3 more radiotherapy treatments left to go plus my chemo tablets until next Monday evening then I have a whole 4 weeks off - I am looking forward to getting back into work for the mornings, and back to class... both of which I have dearly missed!
Love, light, laughter and hugs xxx
From a rough few days, I am starting to see the turnaround.
For me I think the combination of coming down off the steroids, the passing of Aunty Jan (from cancer), and the tiredness of the treatment kicked in all in the same week and it was shite. I leaned on my family and friends for support, and it proved to me that my support networks are in full swing - ready and able to step into action if and when needed.
A little while back I a newspaper article found me (it really did) and I have kept it on my desk ever since. It was a list of rules and tips for life, written by a 90 year old. I can only hope to get to that age, but a few of the suggestions rang true for me this last week:
* It's okay to get angry with God. He can take it.
* Cry with someone. It's more healing than crying alone.
* Life isn't fair, but it's still good.
* Take a deep breath. It calms the mind
* No one is in charge of your happiness but you.
* When in doubt, just take the next small step.
* Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion.
Today is special.
* Time heals almost everything. Give time time.
* ALWAYS choose life.
The last one is so important to me as I fight this battle with all I've got. I've got sooo much to live for and I'm not going anywhere anytime soon thank you very much!
I have 3 more radiotherapy treatments left to go plus my chemo tablets until next Monday evening then I have a whole 4 weeks off - I am looking forward to getting back into work for the mornings, and back to class... both of which I have dearly missed!
Love, light, laughter and hugs xxx
Sunday, 30 October 2011
These last few days...
have not been ideal for me in a 'frame of mind' kinda way... really needing some positive energy about now! It's not been an 'I got some bad news' sadness, it's just 'a holy crap I've got brain cancer and how long am I gonna last' sadness...I'm guessing it's quite normal to have these feelings but up until now it's not really registered with me and I don't like it!
I'm struggling to regain the positivity I had less than a week ago and although I know that I'm barely finished this phase of treatment, I'm already thinking about 'what ifs'.
I am distressed when I look at Toby and feel anxious that worst case scenario I will be leaving him on his own so to speak - I have failed to provide him with a brother or a sister for company as he gets older... nobody to lean on when both of us are gone.
I am concerned about leaving people behind and needing to know they will be okay - Tim and my immediate family in particular... the thought of my grandparents outliving me is also distressing - I'm not sure how they'd cope, being frail and elderly.
We farewelled a beautiful old aunty yesterday at her rememberance lunch, and I'm left wondering if a combination of this, and my dream the other night was a precursor to this down patch. I'm not sure how to build myself back up again, I know it's not helpful to mind, body or spirit to operate in the negative.
One positive that can be drawn out of today is that there is now only 6 more treatments to go at radiotherapy which will bring phase one to a close, I am looking forward to not having to go into town every day, as well as getting back to work for a few hours a week - I have dearly missed my team and the children.
Tomorrow brings the cutting and styling of my second 'new hair'. I am looking forward to this appointment as I want to be able to have a choice of which one I wear to the work do in a couple of weeks time!
Next time I post, I promise I'll be better
Arohanui xx
Thursday, 27 October 2011
Dreams have...
a funny way to make one address ones' subconscious... they have the ability to be so vivid and realistic that at times they can be unnerving and rattle one to the core.
I dreamt in the early hours of this morning that I was surrounded by my family and it was in this dream that I became aware of the fact I was preparing to be euthanised... morbid I know but we can't control our dreams can we?! The weird thing about it was that in my dream I was pottering about still appearing quite well so I'm not entirely sure if my mind was taking the piss and half tricking with the seriousness of what I woke up thinking about.
A condition like this is one way to face quite dramatically my own mortality and as much as I try not to think about it, these wee things (dreams) can sneak in when all is looking rosy as far as attitudes and outlooks go and shake things up a bit. The thing that disturbed me the most about the dream was that Toby was there - not that he was present as such, but he was still looking so young while I was preparing to meet my end, and this to me as a mummy was not okay.
Any way - that's my wee moment over and done with, and the scary stuff out of the way for the next little while... I am LIVING with Anaplastic Astrocytoma; I am NOT dying from one - you hear me?!?!
I'm still bald, and gradually getting balder by the day I think! There's a very sore spot appearing on the crown of my head today so not only will I be bald along the front (can see my VERY straight scar perfectly now) but I may very well have a bald patch on the back too. I've stopped feeling sad about it and have decided that as soon as my radiotherapy has finished I'll get Tim to take the remaining hair off to a number 4 and the wait will begin for new hair to grow... need some fertiliser me thinks - do they still make Regaine?!
9 more to go - WOO HOO!! We are down to single digits which is super exciting. Not that I don't want to see my wonderful team at radiation Oncology as they are excellent company but I will be glad to be rid of the department, and hope like hell not to have to see them again... any time soon anyway!
I'm looking forward to NOT having to travel into town every day... it gets a bit old and no longer a novelty. I'm looking forward to a 3 week break before my next treatment phase begins.
I'm looking forward to a good friend coming to stay tomorrow night for a catch up.
I'm looking forward to the work do next month
I'm looking forward to getting back to work for a few hours a week - have missed it very much.
I'm looking forward to trying on dresses and planning things of a wedding persuasion.
I'm looking forward to becoming well and being rid of hospitals.
I could go on for a while about things I look forward to, but I'll save some just for me ;0)
Love, light and hugs xxx
I dreamt in the early hours of this morning that I was surrounded by my family and it was in this dream that I became aware of the fact I was preparing to be euthanised... morbid I know but we can't control our dreams can we?! The weird thing about it was that in my dream I was pottering about still appearing quite well so I'm not entirely sure if my mind was taking the piss and half tricking with the seriousness of what I woke up thinking about.
A condition like this is one way to face quite dramatically my own mortality and as much as I try not to think about it, these wee things (dreams) can sneak in when all is looking rosy as far as attitudes and outlooks go and shake things up a bit. The thing that disturbed me the most about the dream was that Toby was there - not that he was present as such, but he was still looking so young while I was preparing to meet my end, and this to me as a mummy was not okay.
Any way - that's my wee moment over and done with, and the scary stuff out of the way for the next little while... I am LIVING with Anaplastic Astrocytoma; I am NOT dying from one - you hear me?!?!
I'm still bald, and gradually getting balder by the day I think! There's a very sore spot appearing on the crown of my head today so not only will I be bald along the front (can see my VERY straight scar perfectly now) but I may very well have a bald patch on the back too. I've stopped feeling sad about it and have decided that as soon as my radiotherapy has finished I'll get Tim to take the remaining hair off to a number 4 and the wait will begin for new hair to grow... need some fertiliser me thinks - do they still make Regaine?!
9 more to go - WOO HOO!! We are down to single digits which is super exciting. Not that I don't want to see my wonderful team at radiation Oncology as they are excellent company but I will be glad to be rid of the department, and hope like hell not to have to see them again... any time soon anyway!
I'm looking forward to NOT having to travel into town every day... it gets a bit old and no longer a novelty. I'm looking forward to a 3 week break before my next treatment phase begins.
I'm looking forward to a good friend coming to stay tomorrow night for a catch up.
I'm looking forward to the work do next month
I'm looking forward to getting back to work for a few hours a week - have missed it very much.
I'm looking forward to trying on dresses and planning things of a wedding persuasion.
I'm looking forward to becoming well and being rid of hospitals.
I could go on for a while about things I look forward to, but I'll save some just for me ;0)
Love, light and hugs xxx
Saturday, 15 October 2011
Welcomes and farewells...
These few days since my last blog have seen some comings and goings, some welcomes and farewells for our wee family unit.Last weekend we welcomed a puppy "Pippa" into our family and she is definitely here to stay! Worth her weight in gold, she has been such a good girl for only 12 weeks of age - she is incredibly placid and loves to 'flop' and cuddle which is great for me when I'm resting. Toby loves her too, and she is an excellent source of laughs with her silly puppy behaviour!
On our wee pretend farm this week we have welcomed back one of our hens who has been AWAL for some weeks... with 14 babies... we were recently talking about purchasing some more hens for laying but now I guess we don't need to! Talk is that the roosters will go into the freezer (hopefully for long enough that I might have forgotten how beautiful they were) for eating and we'll have to see about the hens... will need to fast forward chicken proofing the garden now I think! Problem being is that now another of the hens is missing and I just KNOW that she will come back with her brood... don't know where they are hiding but I know that our egg-count has diminished drastically so we are possibly in for a surprise!
Last week brought the passing of a dear old Aunty. She had battled cancer for quite some time and was ready to leave us I think. She wanted no fuss, no funeral, but to be cremated as soon as possible and in time we were to have a garden party to remember her and say our farewells. This will be on the 30th of this month and I shall look forward to remembering a lovely vibrant lady (with pink in her hair!) who was open minded and accepting of everyone who walked the earth alongside her. I am grateful in a purely selfish way that there was no funeral to attend... I think it would have been a terribly difficult one for me to attend - although I absolutely would have out of respect. The garden party idea is great, a good way to remember without perhaps the solemness (is that a word?!) of a structured service as such - as well as a funerals tendency to be fairly soon after the loss of said loved one.. it can be a rather rushed affair to organise and I think letting some time pass enables the grief to subside enough that the life can be celebrated. That's my theory anyway!
This week has also brought the passing of something else... the hair follicles in the radiation treatment area on my head... I am just about 1/4 bald with half my forehead looking red and sunburnt - an excellent look for out in public I thought! My last blog was meant to be a bit of a giggle about 'breaking up' with my hair and I really did laugh writing it, however as it started to fall out even more post-breakup blog, I have shed tears...my hair was more important to me than I think I realised. The 'shedding' has slowed for now but I'm unsure of how much more might go - hopefully not too much. I'd like to think that the hair loss means that the treatment is working so it's all got to be a good thing, right?!
On a bright note, come Monday after treatment I will be exactly half way and only 15 more to go! The lady on the desk at the radiation oncology department said that some people are sad to leave at the end of their treatments and I can totally understand why. The staff have been amazing - so helpful, compassionate and informative... I can honestly say apart from the fact they put the mask on me and strap me to the table each time I see them, I have enjoyed their company and the fact they accommodate my needs (cranking the stereo up while I'm being treated, offering advice for symptom management, and providing a listening ear for my ramblings for example!).
On an even brighter note, we had a lovely visit this weekend from a wonderful 'uncle' - a family friend (from forever) from down south happened to be up in our area so came to stay for the weekend which was great... we look forward to his return - bringing 'aunty' next time too!
We're gearing up tonight for the semi final... hope the boys can do it - I'm not much of a rugby buff but I am feeling nervous.
Into the second week of the school holidays without too many grumbles or exclamations of boredom from Mr 6 - I guess Pippa has helped! The big boys are being collected tomorrow and will be with us until next Monday so the three should entertain themselves quite nicely.
Until next time, take care, keep smiling (and pedalling!), and sending those good vibes into the universe.
I'm off to cuddle my fur-baby (puppy). xxx
Tuesday, 11 October 2011
Dear Hair...
This situation is hard to explain but I can't help feeling that over the last couple of weeks there has been something that has come between us.
This feeling has come to a head today and I can feel you slipping through my fingers - a far cry from what what we were as a partnership. In a way I feel detached from this series of events as I have witnessed a change in you that I have not seen before, and have been readying myself for the instance where we may part company.
I'd like to say that it's not you - it's me.... and I 'm sure that you have your reasons for this distance I can detect when we are together.
I understand that our coping mechanisms are different when it comes to stress, and really feel like I need to pick up your pieces when you fall apart which is what I have found myself doing although we are separating.
As far as I am concerned this needn't be the end, and I am hopeful that one day when you are ready you will see what we had and return for another try - we were inseparable and I will be ready to accept you back into my life.
As for now, I understand why you have made yourself scarce. I promise that I hold no anger toward you - as I say, I have seen this coming for some time now so was not surprised to see you were leaving me.
You are probably right in saying that I will find someone else, but as you know it will never be the same - I could never replace you - never will all of you leave me.
Take care of yourself, I hope to see you again - perhaps with a few changes on board.
Lots of love
Me xx
This feeling has come to a head today and I can feel you slipping through my fingers - a far cry from what what we were as a partnership. In a way I feel detached from this series of events as I have witnessed a change in you that I have not seen before, and have been readying myself for the instance where we may part company.
I'd like to say that it's not you - it's me.... and I 'm sure that you have your reasons for this distance I can detect when we are together.
I understand that our coping mechanisms are different when it comes to stress, and really feel like I need to pick up your pieces when you fall apart which is what I have found myself doing although we are separating.
As far as I am concerned this needn't be the end, and I am hopeful that one day when you are ready you will see what we had and return for another try - we were inseparable and I will be ready to accept you back into my life.
As for now, I understand why you have made yourself scarce. I promise that I hold no anger toward you - as I say, I have seen this coming for some time now so was not surprised to see you were leaving me.
You are probably right in saying that I will find someone else, but as you know it will never be the same - I could never replace you - never will all of you leave me.
Take care of yourself, I hope to see you again - perhaps with a few changes on board.
Lots of love
Me xx
Thursday, 6 October 2011
7 down...
...and counting!
It's been a good week. Bloods on Monday took the typical two attempts, but now I've got 'the' vein etched into my memory so the next and subsequent tests will be easy... lucky me for having deep veins!! Meeting with oncology was successful - blood results (although early days) were excellent and although I had some headaches on Sunday/Monday (which I now know was a viral infection that Tim got the day AFTER me, and was sick... I wasn't, but on anti-nausea so that could be why!) and was advised to stay on my steroid until next week, I have been headache free for the rest of the week and feel good about being able to stop those soon too.
This radiation stuff is unnerving... because it doesn't hurt initially, but the wait for the side effects is a little unnerving... every time I brush my fingers through my hair I'm checking for signs that it might be starting to fall out... waiting...
I am fully expecting to have a 'howlybag' when the day comes that it does start to fall out, but at the same time I want it to start because I know that's the next big step to tackle and I just want to get on with it and find the new 'look' that I will be blessed with...
On a very bright note, I have managed to wean myself off my anti-nausea tablets during the day with no issues at all. I'm still a good girl and have them before my chemo, but it's one less chemical that I'm putting into my body which makes me rest a little more easily!
What isn't resting easy is waking at 3:49am and not being able to get back to sleep! I think I dozed, but will be ready for bed tonight for sure... possibly with a half a sleeping tablet to help a little.
We have had notice that our beautiful Cherie (my sister) is flying in on Sunday so I look forward to having her home and close to me. I know our family operates better when we are all together, and I couldn't think of a better time for us to just 'be' and appreciate each other :0)
This weekend Toby and I will be camping out at Mum and Dad's place at the beach - YAY! A beach weekend, I do hope the weather is good! Tim is off to Queenstown for the weekend on a 'work' trip with some of the guys... adventure weekend I'm told although nobody really knows what sort of adventures there will be! It will be good for him to have some time out and away from home - it's been a heck of a ride for me and I can only imagine what he's been going through - in his manly way he keeps it typically close to his chest... It will be a bit of a release for him, and a weekend to NOT have to worry about me or the things that need doing around the house - just to chill out with the crew and relax a bit.
As I turned my calendar over to October early this week, the wee inspirational quote for the month was
"Life is like a bicycle... you don't fall off unless you stop pedalling"
I thought it was quite poigniant in our house at the moment as we are 'pedalling' as efficiently as we can, and I know that many of you have come along to 'pedal' with us - windbreaks as such, and heaps of you have offered to 'pedal' for me which I truly appreciate. The gratitude I have for all of those actively supporting and sharing this cycle ride with us is immense, and I can honestly say that this whole experience has re-affirmed my faith in the caring nature of people - friends, family - strangers like the health professionals and the hospital admin staff... all have been amazing and can NOT be faulted.
Let's pedal.
It's been a good week. Bloods on Monday took the typical two attempts, but now I've got 'the' vein etched into my memory so the next and subsequent tests will be easy... lucky me for having deep veins!! Meeting with oncology was successful - blood results (although early days) were excellent and although I had some headaches on Sunday/Monday (which I now know was a viral infection that Tim got the day AFTER me, and was sick... I wasn't, but on anti-nausea so that could be why!) and was advised to stay on my steroid until next week, I have been headache free for the rest of the week and feel good about being able to stop those soon too.
This radiation stuff is unnerving... because it doesn't hurt initially, but the wait for the side effects is a little unnerving... every time I brush my fingers through my hair I'm checking for signs that it might be starting to fall out... waiting...
I am fully expecting to have a 'howlybag' when the day comes that it does start to fall out, but at the same time I want it to start because I know that's the next big step to tackle and I just want to get on with it and find the new 'look' that I will be blessed with...
On a very bright note, I have managed to wean myself off my anti-nausea tablets during the day with no issues at all. I'm still a good girl and have them before my chemo, but it's one less chemical that I'm putting into my body which makes me rest a little more easily!
What isn't resting easy is waking at 3:49am and not being able to get back to sleep! I think I dozed, but will be ready for bed tonight for sure... possibly with a half a sleeping tablet to help a little.
We have had notice that our beautiful Cherie (my sister) is flying in on Sunday so I look forward to having her home and close to me. I know our family operates better when we are all together, and I couldn't think of a better time for us to just 'be' and appreciate each other :0)
This weekend Toby and I will be camping out at Mum and Dad's place at the beach - YAY! A beach weekend, I do hope the weather is good! Tim is off to Queenstown for the weekend on a 'work' trip with some of the guys... adventure weekend I'm told although nobody really knows what sort of adventures there will be! It will be good for him to have some time out and away from home - it's been a heck of a ride for me and I can only imagine what he's been going through - in his manly way he keeps it typically close to his chest... It will be a bit of a release for him, and a weekend to NOT have to worry about me or the things that need doing around the house - just to chill out with the crew and relax a bit.
As I turned my calendar over to October early this week, the wee inspirational quote for the month was
"Life is like a bicycle... you don't fall off unless you stop pedalling"
I thought it was quite poigniant in our house at the moment as we are 'pedalling' as efficiently as we can, and I know that many of you have come along to 'pedal' with us - windbreaks as such, and heaps of you have offered to 'pedal' for me which I truly appreciate. The gratitude I have for all of those actively supporting and sharing this cycle ride with us is immense, and I can honestly say that this whole experience has re-affirmed my faith in the caring nature of people - friends, family - strangers like the health professionals and the hospital admin staff... all have been amazing and can NOT be faulted.
Let's pedal.
Saturday, 1 October 2011
So... trick for young players...
Or newbies to this cancer thing... I WAS going to get my hair cut yesterday in preparation for the weekend - and in preparation for it to fall out so as not to frighten a small 6 year old in residence, however I have been advised this is NOT a good idea as it could alter the fit of my radiotherapy mask which could send the dose to the wrong part of my brain which clearly we DON'T want!
I totally never thought about it like that, but very much understand where they are coming from. Never crossed my mind that it could be that precise - however I am thankful that it is!
So... plan is to wait 10-14 days for it to begin to fall out (hopefully it's a bit more stubborn than that... I know I am, so it should follow suit!) then they may re-assess to see if I need another mask made, THEN I can schedule a haircut before new mask making.
It all makes sense now I know the ins and outs of it, but never thought that it would be an issue - really good to know, and probably would have been handy to know before treatment... maybe something for the Midcentral Health feedback form?!
Had a wonderful day today with my colleagues and wonderful work team at our Regional Conference. Was great to see everyone, and I think secretly they might have been pleased to see me too - just to confirm that I really am doing great and still in the land of the living in the most positive way possible!
Had a phone call from my amazingly beautiful sister this afternoon - she'll be home this week some time which is super exciting, and I can't wait to see her. She has her boxing gloves on, ready to fight this thing with me - we Osman girls are forces to be reckoned with - this thing better run for cover... we're out to get it!
Have read another few chapters of Phil Kerslake's "Life, Happiness.... and Cancer" tonight. The nice lady from the Cancer Society gave it to me and it is truly a bit of an inspirational read... well worth it for cancer fighters, their carers, families etc - full of positive, pro active advice on surviving with action and attitude! Phil, the author, is a 6 time cancer survivor and has proven research into mindset and positive attitudes being beneficial to anyone fighting the battle themselves... very VERY cool. One of his suggestions, funnily enough is to write for release... kinda the reason I began this blog - but I think it's not just helping me... there are others out there who can feel like they are in the loop, and as some of my beautiful work ladies told me today (you know who you are xx) they feel like they are helping by being followers and supporters of my ramblings on here - thanks girlies, I can feel your support from here xxx
It must be bedtime now, big day tomorrow to Masterton for a picnic and a swim with all the boys and a wee sojourn to look at some puppies... a possible 'therapy' dog on it's way... possibly! Been baking up a storm tonight and have all sorts of picnicy treats ready to rock and roll!
Night all xx
Leaving you with a lovely quote I heard today...food for thought
"People will forget what you said, people will forget what you did, but people will never forget the way you made them feel"
Maya Angelou.
I totally never thought about it like that, but very much understand where they are coming from. Never crossed my mind that it could be that precise - however I am thankful that it is!
So... plan is to wait 10-14 days for it to begin to fall out (hopefully it's a bit more stubborn than that... I know I am, so it should follow suit!) then they may re-assess to see if I need another mask made, THEN I can schedule a haircut before new mask making.
It all makes sense now I know the ins and outs of it, but never thought that it would be an issue - really good to know, and probably would have been handy to know before treatment... maybe something for the Midcentral Health feedback form?!
Had a wonderful day today with my colleagues and wonderful work team at our Regional Conference. Was great to see everyone, and I think secretly they might have been pleased to see me too - just to confirm that I really am doing great and still in the land of the living in the most positive way possible!
Had a phone call from my amazingly beautiful sister this afternoon - she'll be home this week some time which is super exciting, and I can't wait to see her. She has her boxing gloves on, ready to fight this thing with me - we Osman girls are forces to be reckoned with - this thing better run for cover... we're out to get it!
Have read another few chapters of Phil Kerslake's "Life, Happiness.... and Cancer" tonight. The nice lady from the Cancer Society gave it to me and it is truly a bit of an inspirational read... well worth it for cancer fighters, their carers, families etc - full of positive, pro active advice on surviving with action and attitude! Phil, the author, is a 6 time cancer survivor and has proven research into mindset and positive attitudes being beneficial to anyone fighting the battle themselves... very VERY cool. One of his suggestions, funnily enough is to write for release... kinda the reason I began this blog - but I think it's not just helping me... there are others out there who can feel like they are in the loop, and as some of my beautiful work ladies told me today (you know who you are xx) they feel like they are helping by being followers and supporters of my ramblings on here - thanks girlies, I can feel your support from here xxx
It must be bedtime now, big day tomorrow to Masterton for a picnic and a swim with all the boys and a wee sojourn to look at some puppies... a possible 'therapy' dog on it's way... possibly! Been baking up a storm tonight and have all sorts of picnicy treats ready to rock and roll!
Night all xx
Leaving you with a lovely quote I heard today...food for thought
"People will forget what you said, people will forget what you did, but people will never forget the way you made them feel"
Maya Angelou.
Thursday, 29 September 2011
There are others out there...
So today whilst undergoing my 3rd (only 27 to go - YAHOO!!) lot of radiation therapy, my lovely Mummy struck up a conversation with a man who we had seen every day since we started, who was waiting for his wife.
His wife, as it turns out, had a brain tumour removed on the 31st of July, exactly one month before me. I'd imagine she is quite some way into her radiation and it will be lovely to speak more about it when, no doubt, we will meet tomorrow. Although I know it's a horrible thing to have to endure and wouldn't wish it on anyone, I was almost a little bit excited to hear that she is a brain tumour patient also - after feeling like I was the only one around... not so lonely little me after all! Mum thought that she may have had the same surgeon as me so we could even share 'spunky Dr' and 'amazing Wellington Hospital' stories.
On a slightly crazy note, my beautiful bestie Nicci, who has proven herself to be an amazingly strong cancer survivor and Mummy of two beautiful babies... well, she text me this morning to tell me that her last lot of radiation therapy for her last cancer occurance began last year on exactly the same day that mine did... very spooky but kinda funny all at the same time... we flatted together and have looked out for each other for years and it was such a weird coincidence - Love you Nicci!
Really looking forward to Conference this weekend - I have missed my wonderful ladies at work, and it will be great to go and tautoko (support) them with the waiata after each speaker has spoken - since Palmy is hosting it this year! I will endeavour to do as much of the day as I can, really miss my job and I think it will be a good inspiration for me to be back into it - even if it is just a day for the time being!
Anti- nausea drugs are downed, as are a couple of panadol for good measure - due for day three of Chemo drugs in half an hours time approx. Feeling a lot less apprehensive about this as I was a few days ago... I was really nervous about them making me ill as I knew it was 6 weeks worth and was quite uneasy about this. when the pharmacist at the hospital tells me not to touch the tablets before I put them into my mouth because they are so toxic - yet I still have to put them in my mouth and ingest them into my body... didn't, and still doesn't sit well with me but at least thus far they aren't showing their toxicity to any great degree on the outside - thus far and hoping for the best!
Arohanui xx
His wife, as it turns out, had a brain tumour removed on the 31st of July, exactly one month before me. I'd imagine she is quite some way into her radiation and it will be lovely to speak more about it when, no doubt, we will meet tomorrow. Although I know it's a horrible thing to have to endure and wouldn't wish it on anyone, I was almost a little bit excited to hear that she is a brain tumour patient also - after feeling like I was the only one around... not so lonely little me after all! Mum thought that she may have had the same surgeon as me so we could even share 'spunky Dr' and 'amazing Wellington Hospital' stories.
On a slightly crazy note, my beautiful bestie Nicci, who has proven herself to be an amazingly strong cancer survivor and Mummy of two beautiful babies... well, she text me this morning to tell me that her last lot of radiation therapy for her last cancer occurance began last year on exactly the same day that mine did... very spooky but kinda funny all at the same time... we flatted together and have looked out for each other for years and it was such a weird coincidence - Love you Nicci!
Really looking forward to Conference this weekend - I have missed my wonderful ladies at work, and it will be great to go and tautoko (support) them with the waiata after each speaker has spoken - since Palmy is hosting it this year! I will endeavour to do as much of the day as I can, really miss my job and I think it will be a good inspiration for me to be back into it - even if it is just a day for the time being!
Anti- nausea drugs are downed, as are a couple of panadol for good measure - due for day three of Chemo drugs in half an hours time approx. Feeling a lot less apprehensive about this as I was a few days ago... I was really nervous about them making me ill as I knew it was 6 weeks worth and was quite uneasy about this. when the pharmacist at the hospital tells me not to touch the tablets before I put them into my mouth because they are so toxic - yet I still have to put them in my mouth and ingest them into my body... didn't, and still doesn't sit well with me but at least thus far they aren't showing their toxicity to any great degree on the outside - thus far and hoping for the best!
Arohanui xx
Monday, 26 September 2011
Be careful what you wish for...
Soooo... last blog said I was really ready to get on with treatment...Sunday afternoon we got the phonecall to let us know that today was the start day. Right. Not really ready after all. Kinda wasn't expecting it to be quite this soon, thought we might have had another week up our sleeves!
I've started to plot the countdown on the calender and the 30 treatments will take me (us) through til the beginning of November - give or take a day or two.
The radiation and losing my hair I'm pretty sure I can cope with and feel comfortable about that bit.. I know I'm going to howl when it starts to fall out, but in the grand scheme of things it's the least of my worries! The anxiety for me stems from the Temodol - my chemo tablets. It is likely to make me nauseous and although we will be provided with anti-nausea stuff, it is such an unknown and I know it's 30 days worth to have to endure IF it does make me ill.
I do completely understand that there is no other option and I WILL do this thing. This is the next step in the forward journey to beat this nasty and appears to be the standard 'next' step for brain tumour patients worldwide so here we go...
On a slightly exciting note - we went wig shopping yesterday... VERY cool! Not at all as hideous as I thought it was going to be and even tried a human hair one - I was a bit creeped out at first but it really did feel lovely so we will see... back this afternoon for another look! They were all very realistic and you'd never know I was pretending. Just have to decide now which one.. there was really so many to choose from! I am grateful for the government allocation for patients with permanent hair loss - it is quite generous and I will be able to surprise you all with more than one!
Enjoy your day, appreciate your loved ones, and savour the small wonders of life
xx
I've started to plot the countdown on the calender and the 30 treatments will take me (us) through til the beginning of November - give or take a day or two.
The radiation and losing my hair I'm pretty sure I can cope with and feel comfortable about that bit.. I know I'm going to howl when it starts to fall out, but in the grand scheme of things it's the least of my worries! The anxiety for me stems from the Temodol - my chemo tablets. It is likely to make me nauseous and although we will be provided with anti-nausea stuff, it is such an unknown and I know it's 30 days worth to have to endure IF it does make me ill.
I do completely understand that there is no other option and I WILL do this thing. This is the next step in the forward journey to beat this nasty and appears to be the standard 'next' step for brain tumour patients worldwide so here we go...
On a slightly exciting note - we went wig shopping yesterday... VERY cool! Not at all as hideous as I thought it was going to be and even tried a human hair one - I was a bit creeped out at first but it really did feel lovely so we will see... back this afternoon for another look! They were all very realistic and you'd never know I was pretending. Just have to decide now which one.. there was really so many to choose from! I am grateful for the government allocation for patients with permanent hair loss - it is quite generous and I will be able to surprise you all with more than one!
Enjoy your day, appreciate your loved ones, and savour the small wonders of life
xx
Friday, 23 September 2011
Waiting....
Is something I'm not very good at. Although we've had a pretty busy week, I am very aware that time is ticking on and I'm really ready to get started with this treatment. I know it's potentially going to be a rough ride, but my family assures me they will be there to push me up the hill when needed - so to speak! I will need them, and I am grateful they will be there for me every step of the way.
I don't know how many of you watched the Million Dollar Tumour doco on TV the other night - I found it half way through by fluke, but this was a pretty amazing story of a guy called Dave Bowman who was diagnosed with a brain tumour in the early 2000's. His was a grade 4 and he battled the drug company Pharmac to get 'Temodol' (brain specific chemotherapy tablets that I will be taking) subsidised for NZ sufferers. He won this battle eventually, however because he was already a sufferer of a tumour he did not qualify to receive the drug subsidy... pretty stink. He did eventually lose his battle with his tumour - his was a grade 4 (again, I'm grateful mine is only grade 3) but his legacy lives on with the rest of us brain tumour lot who get to receive the drug because of him. His website is www.headstart.org.nz/ and is well worth a look - very very courageous battler, in many senses of the word. When his time was precious, he spent it thinking about others.
We, however, are looking forward to only thinking about ourselves tonight, with a nice dinner date booked! We have been under a wee bit of stress (can't think why!!) lately and it will be nice to enjoy each others' company somewhere out of the house and be grown ups for the evening... followed by the rugby somewhere afterwards I'm sure!!
Enjoy your weekend.
I don't know how many of you watched the Million Dollar Tumour doco on TV the other night - I found it half way through by fluke, but this was a pretty amazing story of a guy called Dave Bowman who was diagnosed with a brain tumour in the early 2000's. His was a grade 4 and he battled the drug company Pharmac to get 'Temodol' (brain specific chemotherapy tablets that I will be taking) subsidised for NZ sufferers. He won this battle eventually, however because he was already a sufferer of a tumour he did not qualify to receive the drug subsidy... pretty stink. He did eventually lose his battle with his tumour - his was a grade 4 (again, I'm grateful mine is only grade 3) but his legacy lives on with the rest of us brain tumour lot who get to receive the drug because of him. His website is www.headstart.org.nz/ and is well worth a look - very very courageous battler, in many senses of the word. When his time was precious, he spent it thinking about others.
We, however, are looking forward to only thinking about ourselves tonight, with a nice dinner date booked! We have been under a wee bit of stress (can't think why!!) lately and it will be nice to enjoy each others' company somewhere out of the house and be grown ups for the evening... followed by the rugby somewhere afterwards I'm sure!!
Enjoy your weekend.
Saturday, 17 September 2011
I forgot one...
Celebrate, appreciate and be grateful.
Celebrate the little things... the time you spend with family, the certificates brought home from school, the success of a day doing 'jobs'. Appreciate smiles, hugs, and tender touches. Enjoy the weather - ANY kind, it's a good thing to be here!
I am grateful again for the small things - the taken-for-granteds that really were just that in my life before diagnosis... my friends, my family - how lucky I really am to be here after learning about the terror that was growing inside my head. I was two weeks away from having a stroke... how lucky was I?
I am grateful.
Celebrate the little things... the time you spend with family, the certificates brought home from school, the success of a day doing 'jobs'. Appreciate smiles, hugs, and tender touches. Enjoy the weather - ANY kind, it's a good thing to be here!
I am grateful again for the small things - the taken-for-granteds that really were just that in my life before diagnosis... my friends, my family - how lucky I really am to be here after learning about the terror that was growing inside my head. I was two weeks away from having a stroke... how lucky was I?
I am grateful.
Friday, 16 September 2011
Things I have learnt...
It's hard to believe that in a few short days will bring a life-changing month to a close. We have strengthened as a family unit, Tim and I as a couple, and we really, really know who our nearest and dearest friends are - arohanui and thank you to you all.
We have learnt some valuable lessons along the way, and although I know the real journey is just beginning - the new perspectives we have gained on life already have defined the path we will travel on from now.
Don't sweat the small stuff
Because in the grand scheme of life - does it really matter?! I was never a stressy person anyway, but this illness has put a whole new slant on my attitude to life, and I feel relaxed and grateful for everything I have, no matter how small - I have it, it's mine, I'm here and I'm grateful.
Never miss an opportunity to say 'I love you'
You cannot hear it too many times. Simple. If you feel it, say it. This is something that I am grateful for. I have always felt loved by my family, my parents - now we tell each other every day and it means so much to share these words with each other. I am loved, and I've always known this - but to hear it really is something special.
Get insurance - life, medical, mortgage protection... anything would help!
This is something that I never worried about and really should have... please - don't think that it won't happen to you (I hope it doesn't) but some sort of insurance would really help right now to square things away and to provide peace of mind for poor Tim. This interim treatment time of 6-8 months is an unknown as far as my work capabilities will be, so lack of income for the short-term is quite possible for us. I have yet to meet with the bank regarding mortgage insurance, that could be a whole other story!
Research positives, don't scare yourselves
There is so much doom and gloom on the Internet and these diagnosis websites - not to mention Wikipedia - that it is easy to get scared and let the negative vibes begin to infiltrate... WORST enemy ever. First thing I did was google Surviving Anaplastic Astrocytoma because that's what I am going to do - I found a cancer survivors network... okay it was American, BUT there is proof out there that people with my condition are surviving and kicking butt long after the Doctors have predicted. At the end of the day all Doctors can do is predict, they don't really know. The averages they hand out to people like me are based on PAST research and data collection - who knows over how many years. Medical science has come a long way in a very short time, and new things are discovered ALL the time, so I'm not paying too much attention to these average time frames that have been handed to me.
Be Pro-active
We left the initial meeting with the Oncologist with nothing... no information for further support networks, no phone numbers for people to call to help us deal with this news we'd been given... we didn't know what to do next, and I must say I was surprised that no extra support was offered. This is something that I will endeavour to suggest as a potential alteration to their news-delivery regimen - it took our GP to refer us to the psycho-oncology programme - a free service provided by Massey University for cancer patients and their families for psychological support. Information and registration could have been offered at this initial meeting, which would have been a safety net for us to know they were taking care of us as whole people, not just the nasties in my brain.
I have signed up to forums (NZ and overseas) for cancer patients, survivors and their families. I have yet to introduce myself on them, however now I have this blog to share I can post it up and people can get to know my story. If it helps only one person feel more positive, then my job is done - I know it's helping me! I have purchased books from Amazon - one in particular 'Anti-Cancer: A new way of life' The author is a physician and a 15 year survivor of brain cancer. It came highly recommended on one of my forums, so it had to be mine. I will begin to read it today. I have already decided to take EVERYTHING that has and will be offered to me - at this stage I feel I probably don't need the psycho-oncology service but will meet with them to see what they think and what the next steps are.
Family is it.
Upon hearing the news, my beautiful sister is finishing up in Perth and will be joining us here in New Zealand within the month. Thankfully she had just finished up with her job, and now is coming home to be a huge help and comfort to us all... including possibly a taxi driver for me! It will be wonderful to have her home, it's been a few years since she lived in New Zealand and I know that we all missed her dearly - thank you Cherie, I can't wait to see you. We will do this together and this thing will not mess with us, we are forces to be reckoned with!
We are currently awaiting a treatment start-date - I was scanned and masked and scanned again this week just gone, and have been told it will be 2-3 weeks for planning before they'll be ready for me. I am picking that when the time comes I'll be well and truly ready for them too.
We have learnt some valuable lessons along the way, and although I know the real journey is just beginning - the new perspectives we have gained on life already have defined the path we will travel on from now.
Don't sweat the small stuff
Because in the grand scheme of life - does it really matter?! I was never a stressy person anyway, but this illness has put a whole new slant on my attitude to life, and I feel relaxed and grateful for everything I have, no matter how small - I have it, it's mine, I'm here and I'm grateful.
Never miss an opportunity to say 'I love you'
You cannot hear it too many times. Simple. If you feel it, say it. This is something that I am grateful for. I have always felt loved by my family, my parents - now we tell each other every day and it means so much to share these words with each other. I am loved, and I've always known this - but to hear it really is something special.
Get insurance - life, medical, mortgage protection... anything would help!
This is something that I never worried about and really should have... please - don't think that it won't happen to you (I hope it doesn't) but some sort of insurance would really help right now to square things away and to provide peace of mind for poor Tim. This interim treatment time of 6-8 months is an unknown as far as my work capabilities will be, so lack of income for the short-term is quite possible for us. I have yet to meet with the bank regarding mortgage insurance, that could be a whole other story!
Research positives, don't scare yourselves
There is so much doom and gloom on the Internet and these diagnosis websites - not to mention Wikipedia - that it is easy to get scared and let the negative vibes begin to infiltrate... WORST enemy ever. First thing I did was google Surviving Anaplastic Astrocytoma because that's what I am going to do - I found a cancer survivors network... okay it was American, BUT there is proof out there that people with my condition are surviving and kicking butt long after the Doctors have predicted. At the end of the day all Doctors can do is predict, they don't really know. The averages they hand out to people like me are based on PAST research and data collection - who knows over how many years. Medical science has come a long way in a very short time, and new things are discovered ALL the time, so I'm not paying too much attention to these average time frames that have been handed to me.
Be Pro-active
We left the initial meeting with the Oncologist with nothing... no information for further support networks, no phone numbers for people to call to help us deal with this news we'd been given... we didn't know what to do next, and I must say I was surprised that no extra support was offered. This is something that I will endeavour to suggest as a potential alteration to their news-delivery regimen - it took our GP to refer us to the psycho-oncology programme - a free service provided by Massey University for cancer patients and their families for psychological support. Information and registration could have been offered at this initial meeting, which would have been a safety net for us to know they were taking care of us as whole people, not just the nasties in my brain.
I have signed up to forums (NZ and overseas) for cancer patients, survivors and their families. I have yet to introduce myself on them, however now I have this blog to share I can post it up and people can get to know my story. If it helps only one person feel more positive, then my job is done - I know it's helping me! I have purchased books from Amazon - one in particular 'Anti-Cancer: A new way of life' The author is a physician and a 15 year survivor of brain cancer. It came highly recommended on one of my forums, so it had to be mine. I will begin to read it today. I have already decided to take EVERYTHING that has and will be offered to me - at this stage I feel I probably don't need the psycho-oncology service but will meet with them to see what they think and what the next steps are.
Family is it.
Upon hearing the news, my beautiful sister is finishing up in Perth and will be joining us here in New Zealand within the month. Thankfully she had just finished up with her job, and now is coming home to be a huge help and comfort to us all... including possibly a taxi driver for me! It will be wonderful to have her home, it's been a few years since she lived in New Zealand and I know that we all missed her dearly - thank you Cherie, I can't wait to see you. We will do this together and this thing will not mess with us, we are forces to be reckoned with!
We are currently awaiting a treatment start-date - I was scanned and masked and scanned again this week just gone, and have been told it will be 2-3 weeks for planning before they'll be ready for me. I am picking that when the time comes I'll be well and truly ready for them too.
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