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
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