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
Saturday, 31 December 2011
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
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