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
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.
Finding a new path to travel on and watching it change...
So this past week has found us adapting to a new post-surgery routine and taking in the instructions for the next steps in treatment... for the most part we have felt incredibly blessed to have made it through diagnosis and brain surgery without any problems. I have no more headaches, and apart from some wicked black eyes and a bit of superficial swelling it wasn't long before I was feeling back to normal.
The Consultants in Wellington informed us that due to the fact 10% of the tumour was still in my brain, some follow up treatment in the form of radiation would be necessary to ensure correct control of the remainder.. this was not a problem and we were more than prepared to do what was necessary to get rid of the over-stayer that was over staying.
Up until the meeting with the Oncology department last Thursday, I had stayed away from Google and the web diagnosis side of things - I didn't want to frighten myself, and knew that the histology wasn't due back for 7-10 days after surgery so was prepared to wait for a correct diagnosis.
Thursday was the day it all changed.... again. The Oncologist (I think was Russian) in his very matter of fact manner explained the results of the histology and told me I have something called an Anaplastic Astrocytoma. This was explained as a grade 3 brain tumour on a scale of 2-4 in adults, and has a very agressive reoccurral rate even after treatment - we were told there was a 90% chance it will return in the same part of my brain and for some reason (my thoughts had become fuzzy by this stage), and there was a reason, they could only do radiation to the same part of the brain once... The kicker of a prognosis came next - 'on average people with your condition live 5-10 years'. I had the overwhelming urge to get up and leave the room - but didn't. Tim had asked the Dr three times to repeat what he'd just said as he thought he'd misheard him completely.
Sadly this was not the case, and after a numb farewell from the office and a promise to meet again to answer any questions we may have, we were left to each other and out into the very big, momentarily terrifying world.
Had we totally underestimated what we were dealing with? Should we have researched the intermediary diagnosis on my discharge papers? Did the team down in Wellington think we were stupid for being so upbeat about the whole brain tumour thing? What were we going to do? How was I going to tell my Mum? My Dad? My brothers? My beautiful sister in Perth? What about Toby? What about the baby we were trying for? What were we going to do?
We drove straight past our house in a fog and ended up at the beach. Tim took Toby for a walk and I broke the news to Mum first, then Dad as he arrived home from work, then each of my brothers as they arrived at the house also. We decided that Toby and the big boys need not know about the gory details until such time that they may need to, only that I needed some more treatment to make sure the bits that were left got fried up and went away.
Mum was and is amazing, offering her support and loves and cuddles and not ready in any way shape or form to let me go anywhere anytime soon. My Dad cursed and wanted to take my place straight away - denial was his course of action - 'he must be wrong, we'll find someone that knows what their talking about'. My brothers were stoic and offered their condolances... my sister still didn't know and I didn't know how to tell her. This was something that needed to be done in person and there was just no way of doing it.
As we returned home that night there was a text message from my sister Cherie in Perth, asking how the appointment went with Oncology... I had to tell her. I replied via text and heard nothing... expected to hear that she was on a plane and heading back to us straight away... nothing.
We held each other that night. Not sleeping, not speaking, just being. I struggled with letting Tim out of my sight, and the anxiety within me was unbearable. What was I going to do? I am too young.
Next day brought sunshine, brought cars driving past, cows in the back paddock, Toby off to school... life carried on as per normal. We were tired, drained, emotionally weary and frightened, but carried on through the motions of the day as Tim left me at the beach with Mum while he drove to collect his boys from Hawkes Bay.
I phoned our wonderful new GP who agreed to see me after hours that evening, as I felt I needed something to help me sleep... I knew that if I could sleep, my thoughts would become clearer and I would feel stronger to face this enormous hurdle ahead of me.
I tried to sleep in the sunshine at the beach, curled up with Mum and the dogs on her bed, all that came was tears... tears and visitors, well-wishers and lots of cups of tea.
I missed Tim, he'd been gone only a few hours but I needed to have him with me.
Toby came home from school and life had to return to the norm for his sake, we did some homework and read some books on Nana's bed in the sunshine - all very normal things to do... even for a girl with brain cancer.
Tim arrived home with the big boys. It was a relief to see them - again another sense of normal, and I think they were pleased to see me as it was the first time after surgery and they could see that I was okay... on the outside at least.
A promise of takeaway tea had the boys behaving beautifully in the waiting room, while Tim and I met with the GP to discuss the oncology news and what we could do about it. We left with a script for some sleeping tablets and anti-anxiety stuff which would hopefully get me through the next few tough days processing the news.
They did, and I'm pleased to say I do not NEED them now (8 days on) but I know they are there if I do.
I got an email from my sister who didn't receive my text - I replied to her email (second worst way to deliver shitty news) and hoped she would be okay.
As the bruises on my face and swelling on my head have subsided, my resolve to fight this has strengthened. I have researched for positive stories, treatment options, survivors, forums, chat networks, and I have found that HOPE is NOT lost and I will NOT lose HOPE.
The Consultants in Wellington informed us that due to the fact 10% of the tumour was still in my brain, some follow up treatment in the form of radiation would be necessary to ensure correct control of the remainder.. this was not a problem and we were more than prepared to do what was necessary to get rid of the over-stayer that was over staying.
Up until the meeting with the Oncology department last Thursday, I had stayed away from Google and the web diagnosis side of things - I didn't want to frighten myself, and knew that the histology wasn't due back for 7-10 days after surgery so was prepared to wait for a correct diagnosis.
Thursday was the day it all changed.... again. The Oncologist (I think was Russian) in his very matter of fact manner explained the results of the histology and told me I have something called an Anaplastic Astrocytoma. This was explained as a grade 3 brain tumour on a scale of 2-4 in adults, and has a very agressive reoccurral rate even after treatment - we were told there was a 90% chance it will return in the same part of my brain and for some reason (my thoughts had become fuzzy by this stage), and there was a reason, they could only do radiation to the same part of the brain once... The kicker of a prognosis came next - 'on average people with your condition live 5-10 years'. I had the overwhelming urge to get up and leave the room - but didn't. Tim had asked the Dr three times to repeat what he'd just said as he thought he'd misheard him completely.
Sadly this was not the case, and after a numb farewell from the office and a promise to meet again to answer any questions we may have, we were left to each other and out into the very big, momentarily terrifying world.
Had we totally underestimated what we were dealing with? Should we have researched the intermediary diagnosis on my discharge papers? Did the team down in Wellington think we were stupid for being so upbeat about the whole brain tumour thing? What were we going to do? How was I going to tell my Mum? My Dad? My brothers? My beautiful sister in Perth? What about Toby? What about the baby we were trying for? What were we going to do?
We drove straight past our house in a fog and ended up at the beach. Tim took Toby for a walk and I broke the news to Mum first, then Dad as he arrived home from work, then each of my brothers as they arrived at the house also. We decided that Toby and the big boys need not know about the gory details until such time that they may need to, only that I needed some more treatment to make sure the bits that were left got fried up and went away.
Mum was and is amazing, offering her support and loves and cuddles and not ready in any way shape or form to let me go anywhere anytime soon. My Dad cursed and wanted to take my place straight away - denial was his course of action - 'he must be wrong, we'll find someone that knows what their talking about'. My brothers were stoic and offered their condolances... my sister still didn't know and I didn't know how to tell her. This was something that needed to be done in person and there was just no way of doing it.
As we returned home that night there was a text message from my sister Cherie in Perth, asking how the appointment went with Oncology... I had to tell her. I replied via text and heard nothing... expected to hear that she was on a plane and heading back to us straight away... nothing.
We held each other that night. Not sleeping, not speaking, just being. I struggled with letting Tim out of my sight, and the anxiety within me was unbearable. What was I going to do? I am too young.
Next day brought sunshine, brought cars driving past, cows in the back paddock, Toby off to school... life carried on as per normal. We were tired, drained, emotionally weary and frightened, but carried on through the motions of the day as Tim left me at the beach with Mum while he drove to collect his boys from Hawkes Bay.
I phoned our wonderful new GP who agreed to see me after hours that evening, as I felt I needed something to help me sleep... I knew that if I could sleep, my thoughts would become clearer and I would feel stronger to face this enormous hurdle ahead of me.
I tried to sleep in the sunshine at the beach, curled up with Mum and the dogs on her bed, all that came was tears... tears and visitors, well-wishers and lots of cups of tea.
I missed Tim, he'd been gone only a few hours but I needed to have him with me.
Toby came home from school and life had to return to the norm for his sake, we did some homework and read some books on Nana's bed in the sunshine - all very normal things to do... even for a girl with brain cancer.
Tim arrived home with the big boys. It was a relief to see them - again another sense of normal, and I think they were pleased to see me as it was the first time after surgery and they could see that I was okay... on the outside at least.
A promise of takeaway tea had the boys behaving beautifully in the waiting room, while Tim and I met with the GP to discuss the oncology news and what we could do about it. We left with a script for some sleeping tablets and anti-anxiety stuff which would hopefully get me through the next few tough days processing the news.
They did, and I'm pleased to say I do not NEED them now (8 days on) but I know they are there if I do.
I got an email from my sister who didn't receive my text - I replied to her email (second worst way to deliver shitty news) and hoped she would be okay.
As the bruises on my face and swelling on my head have subsided, my resolve to fight this has strengthened. I have researched for positive stories, treatment options, survivors, forums, chat networks, and I have found that HOPE is NOT lost and I will NOT lose HOPE.
Thursday 15 September 2011
So here's the deal....
When I say Welcome to my world, I'm kinda welcoming myself into it too.
The world I used to know has changed dramatically in the space of 23 days and will never be the same.
My name is Wendy and I'm 30 years old. I have a fiancee, Tim, and between us we have 3 boys, aged 10, 8, and 6 - Mr 6 lives with us full time. We live on a small block of land in the Palmerston North area, and have a farmyard of animals to keep us busy. Up until my world turned sideways I was a part time preschool teacher and full time student - I'm 12 weeks out from finishing my diploma of teaching ECE... how's that for timing?! As you will appreciate if/when you read on things on this front are currently on hold, but I am sure that it wont be too long before I am back to work and get this study stuff completed... I WILL graduate with my girls early next year.
This is my story from the last 20 odd days... it's a lot to take in. I am aware that some of you may know already, and some might just be joining me, so bare with me and if you get through it all - thank you and I hope you will continue to join me on my journey....
After suffering for the best part of 7 weeks with progressively worsening headaches and nausea, 6 return trips to the GP (prescriptions for 18 tablets a day to manage my pain which was NOT ), two to the osteopath and two to a Bowen therapist it was the insight of my Mum to book me into an Optometrist to have my eyes looked at. On the 24th of August 2011 I fronted for my appointment and the problem was immediately evident with the first test undertaken... he could see that the optic nerves in both eyes were under considerable pressure which clearly wasn't normal and the possible cause of my headaches. We continued on with the testing and on the bright side I didn't need glasses however he said he'd inform my GP of what he'd found.
Within half an hour of leaving the practice that afternoon I received a call from my GP informing me that the Optometrist had phoned and demanded I be seen, so I headed immediately to them where my eyes were examined for the FIRST time by the GP in the 6 visits I'd made. She agreed that yes there was some swelling and ordered a CT scan for the next day.
I returned to work next day as normal and awaited a time for my CT scan appointment. At 2pm Mum came to meet me at Broadway Radiology, as she was in town and thought moral support could be needed (thank heavens!) and we waited for our turn. The staff were lovely and the scan very straight-forward and not at all stressful... until the Radiologist came in followed by a gaggle of people - with Mum - and my heart sank.
I was told VERY gently that "there is something going on in your brain" and that they needed to get me to the hospital so an ambulance was on its way. The rest of that moment was a blur, with me needing a wee lie down and Mum heading away to try and make phone calls - Dad was working in Wanganui, and Tim was in Wellington on an overnight business trip. Us girls were left to sort it for the mean time and the ambulance arrived faster than I'd ever thought. Everyone was being so gentle with me, frighteningly so... almost like they were expecting me to drop dead in front of them.
The Radiographer's hands were shaking as he delivered the news to us in the CT room, and everyone was visibly shaken... clearly not an every day occurrence for the team. My hands managed to stop shaking enough for me to dial my best friend Nicci so Mum could tell her what had happened and please could she meet us at hospital for extra girl-power. Poor Mum also had to ring Tim and ask him to come back from Wellington - a drive he said he 'barely remembers', and poor Dad who arrived pretty quickly too.
The ambulance staff were amazing, very kind and gentle - and once at A&E they waited with me as Mum was ushered urgently through the door. I had managed to call work in the ambulance and let them know I wasn't coming back and that I didn't really know what was going on but it was serious, but up until that moment in Broadway Radiology I assumed I had a sinus infection gone wrong and that I'd be back at work to finish the day as I had been for the last 7 weeks. Nicci arrived shortly after Mum, and brought her two beautiful children which were a wonderful distraction in slightly stressful times.
The Registrar arrived promptly and put me through a series of tests and observations - I'm not stupid and gathered immediately they were testing me for stroke symptoms so I kinda figured it was a pretty big deal. The prognosis was pretty urgent - the team at Broadway Radiology had notified the neurosurgeons in Wellington before they had broken the news to me, so it was a case of awaiting their decision although talk was made of a chopper ride down that afternoon for surgery.
Thankfully the call was made to the team in Palmerston North and I was started on steroids to reduce the swelling in my brain and I was admitted for the night with plans for an MRI in the morning. Hospital stay is average... the staff were amazing even though I was woken 2 hourly in the night to make sure I was still remembering who and where I was and that I hadn't had a stroke - nurses truly do not get paid enough - in my whole stay in both hospitals I NEVER got a bad one!
The scan next morning(Friday 26/8/11) brought some excellent tranquilizing drugs and I actually have to say I enjoyed the experience... go the IV Hypnoval! The same Radiologist from the Broadway practice came to oversee it, and was just as wonderful as the day before - he took Tim in to show him what they found and described what he assumed it could be - a Glioblastoma Multiforme - and what the next plan of attack could be which was reassuring for both of us.
The next plan was waiting for transfer to Wellington to the Neurosurgical team which happened on Sunday afternoon, and within the few days in Palmerston North I was inundated with visitors and the positive spirits and attitudes were amazing. I felt ridiculously healthy to have a tumor inside my head, and had no evidence of a headache (due to the steroids I'd imagine) for the entire time.
Transfer to Wellington was via St John Ambulance - one volunteer and the paramedic was working overtime just so they could get me down there... again another service that deserves recognition. This was a much shorter trip than I had expected and I know that Tim was a bit disappointed he didn't get his chopper or fixed-wing ride, but we got there safe and sound and in time for dinner!
Within an hour of arriving in Wellington we were met by a Neurological Consultant by the name of Tim Killeen who arrived with his ipad and showed us the scans (which brought it home for me why the medical team were in a panic in Palmerston North) and outlined what their plan could be. He was very informative and explained with no stress and no bullshit about whether we were dealing with a problem, or a major problem. He explained that I was approximately two weeks out from having a stroke which would have had definite neurological deficits attached, but he also said that if any brain tumor was lucky to have, the position and the 'lobe' it was in was the best place to have it - in terms of surgery access. This put is at ease somewhat, and we were informed that surgery would probably be Tuesday, but the Surgeon would be around in the morning to discuss it further.
Monday morning rounds were an eye opener - the surgeon was a human precision instrument - Calvin Klein from head to toe, with his consultants and minions falling over themselves to be in his presence - very young - although I've never met a neurosurgeon before so I'm not sure what I was expecting... I'm also told he drives a motorbike! http://www.healthpoint.co.nz/default,70603.sm;jsessionid=7B760786C970468503B6316252EF5695?service=70499
He delayed my surgery by a day to conduct a 'stealth' scan - a fancy MRI to plot image guidance for surgery... his concern was because of my being left-handed and the tumor being on the right side of my brain that he didn't want to affect my motor function by removing too much or poking around more than necessary - he explained that it would be during surgery when they decided how much of the tumor they could safely remove, weighed up against me waking up still me... as the right frontal lobe affects mood, memory and personality - and of course my left handedness. So that afternoon my head was shaved in patches and some foam 'fiducials' (tap-washer things) were added to my head in order to act as markers in the scan and surgery. I braved the public cafe that afternoon to have some non-hospital time with my amazing family - the surreality of the situation was evident for each of us... nobody could believe it, but we remained positive and upbeat, just wanting to get the 'job' of surgery over and done and that would be the big problem out of the way.
MRI Tuesday afternoon was no big deal - very quick - and Tim was getting very good at rubbing my feet and being a goof at the end of the table to take my mind off the tiny noisy tube I was thrust inside. Then it was a waiting game... I got to see Toby, our 6 year old, who had come down for the day when we got news the surgery had been delayed it was a great opportunity to have a day with Mum and Dad as we weren't sure how long after surgery we'd be able to see him... with my bandages and potential bruising I didn't want to frighten him by bringing him back too soon after surgery.
Surgery day was a blur, up at 6 and last medications - into theatre gown and met the Anaesthetist before we went down to theatre. Saying goodbye to my family was the hardest part, as was the painful first syringe of anaesthetic - think my line was a bit blocked - but I was out before it was fully administered thank goodness. I woke up peacefully - a huge fear of mine was waking up in a panic with tubes in my throat - thankful again that this did not happen. the recovery nurses were wonderful and I felt fantastic on that afternoon - even managing a thumbs up for a photo, and a glimpse of the surgeon as he came to visit later in the afternoon. The surgery itself went well he said, they were able to get 90% of the tumor which he was very happy with - and so were we. I was fine, seeing, hearing, talking and in very little pain so was relieved that the hard part was over.
Thursday was the WORST day... the euphoric medication they had filled me with the day before had well and truly worn off, the right side of my face had blown up and I could no longer open my eye... the pressure bandage was just that and all I wanted to do was sleep. I don't remember too much pain but the swelling definitely unnerved me and cold flannels and witch hazel compresses were the order of the day.
It was an excellent opportunity for my Tim, Mum and Dad to get in some long-lost practice of spoon feeding me as I lay flat - it's been a while since any of them have fed a baby!
Thursday was also the day that the Physio tried to get me up and out of bed... I managed to walk slowly to the bathroom, took one look at my face in the mirror and promptly fainted... needless to say I was back to bed for the rest of the day. I think I wasn't prepared for the sight of my face, and it gave me a big fright - I'm such a big baby!
Friday was post-op MRI day - I was wheeled everywhere in the bed due to my previous wobbly day, but was feeling much better and my eye was beginning to open which was a comfort - and better for the balance. That afternoon my wonderful Mummy and my nurse Emily got me up and about 'her way' and not the way the physio tried the day before, which was much more successful and greatly appreciated by myself not to be rushed! Toby came down for the day again to see me - he laughed nervously at my black eyes and told me I needed to stop playing so much rugby. It was a relief to see him as I knew he'd have been processing it all in his own way, but for him to see that I was up and about, and still Mummy made me feel at ease.
The weekend was spent killing time, removing bandages and dressings one by one, and receiving visitors which we were not short of - again - truly grateful for my support network and the people that came out of the woodwork to check up on me... it was amazingly humbling and uplifting. Noises were made amongst the medical team about transferring me back to Palmerston North Hospital for a few days come the Monday, but after assessment from Tim the Physio, Tim the Occupational Therapist, Tim the Neurological Consultant and Tim (the fiancee... obviously a popular name in that generation?!) the decision was made to discharge me into the care of my family and we were allowed to head home into the big wide world.
The trip home was a ginger one - I was fine but Tim was driving and clearly nervous about his cargo... the sun was shining and after nearly 11 days in hospital I was happy to bask in the sun and snooze and begin to feel semi normal again. Mum had prepared a delicious welcome home meal, and we had some friends to visit and join us for the meal also. We opted to stay the night with the family, taking Toby to school and returning home the next morning.
Home was surreal... I didn't particularly want to be there but I didn't know where I wanted to be... I had the overwhelming urge to be doing something but was aware that I wasn't allowed to drive and didn't know where I wanted to go anyway. I think that because I went from 'go to whoa' in a few short hours 11 days previous, I needed to remember that I was still a patient although I was home, and to rest up which didn't come easy. I was pleased to see all my animals were well and happy, thankful for the farming neighbours that stepped in to feed and tend to them while we were away.
Aside from these tangible areas in our previous life, we were very aware that our old 'normal' had disappeared, and we had to set about finding a new one...
The world I used to know has changed dramatically in the space of 23 days and will never be the same.
My name is Wendy and I'm 30 years old. I have a fiancee, Tim, and between us we have 3 boys, aged 10, 8, and 6 - Mr 6 lives with us full time. We live on a small block of land in the Palmerston North area, and have a farmyard of animals to keep us busy. Up until my world turned sideways I was a part time preschool teacher and full time student - I'm 12 weeks out from finishing my diploma of teaching ECE... how's that for timing?! As you will appreciate if/when you read on things on this front are currently on hold, but I am sure that it wont be too long before I am back to work and get this study stuff completed... I WILL graduate with my girls early next year.
This is my story from the last 20 odd days... it's a lot to take in. I am aware that some of you may know already, and some might just be joining me, so bare with me and if you get through it all - thank you and I hope you will continue to join me on my journey....
After suffering for the best part of 7 weeks with progressively worsening headaches and nausea, 6 return trips to the GP (prescriptions for 18 tablets a day to manage my pain which was NOT ), two to the osteopath and two to a Bowen therapist it was the insight of my Mum to book me into an Optometrist to have my eyes looked at. On the 24th of August 2011 I fronted for my appointment and the problem was immediately evident with the first test undertaken... he could see that the optic nerves in both eyes were under considerable pressure which clearly wasn't normal and the possible cause of my headaches. We continued on with the testing and on the bright side I didn't need glasses however he said he'd inform my GP of what he'd found.
Within half an hour of leaving the practice that afternoon I received a call from my GP informing me that the Optometrist had phoned and demanded I be seen, so I headed immediately to them where my eyes were examined for the FIRST time by the GP in the 6 visits I'd made. She agreed that yes there was some swelling and ordered a CT scan for the next day.
I returned to work next day as normal and awaited a time for my CT scan appointment. At 2pm Mum came to meet me at Broadway Radiology, as she was in town and thought moral support could be needed (thank heavens!) and we waited for our turn. The staff were lovely and the scan very straight-forward and not at all stressful... until the Radiologist came in followed by a gaggle of people - with Mum - and my heart sank.
I was told VERY gently that "there is something going on in your brain" and that they needed to get me to the hospital so an ambulance was on its way. The rest of that moment was a blur, with me needing a wee lie down and Mum heading away to try and make phone calls - Dad was working in Wanganui, and Tim was in Wellington on an overnight business trip. Us girls were left to sort it for the mean time and the ambulance arrived faster than I'd ever thought. Everyone was being so gentle with me, frighteningly so... almost like they were expecting me to drop dead in front of them.
The Radiographer's hands were shaking as he delivered the news to us in the CT room, and everyone was visibly shaken... clearly not an every day occurrence for the team. My hands managed to stop shaking enough for me to dial my best friend Nicci so Mum could tell her what had happened and please could she meet us at hospital for extra girl-power. Poor Mum also had to ring Tim and ask him to come back from Wellington - a drive he said he 'barely remembers', and poor Dad who arrived pretty quickly too.
The ambulance staff were amazing, very kind and gentle - and once at A&E they waited with me as Mum was ushered urgently through the door. I had managed to call work in the ambulance and let them know I wasn't coming back and that I didn't really know what was going on but it was serious, but up until that moment in Broadway Radiology I assumed I had a sinus infection gone wrong and that I'd be back at work to finish the day as I had been for the last 7 weeks. Nicci arrived shortly after Mum, and brought her two beautiful children which were a wonderful distraction in slightly stressful times.
The Registrar arrived promptly and put me through a series of tests and observations - I'm not stupid and gathered immediately they were testing me for stroke symptoms so I kinda figured it was a pretty big deal. The prognosis was pretty urgent - the team at Broadway Radiology had notified the neurosurgeons in Wellington before they had broken the news to me, so it was a case of awaiting their decision although talk was made of a chopper ride down that afternoon for surgery.
Thankfully the call was made to the team in Palmerston North and I was started on steroids to reduce the swelling in my brain and I was admitted for the night with plans for an MRI in the morning. Hospital stay is average... the staff were amazing even though I was woken 2 hourly in the night to make sure I was still remembering who and where I was and that I hadn't had a stroke - nurses truly do not get paid enough - in my whole stay in both hospitals I NEVER got a bad one!
The scan next morning(Friday 26/8/11) brought some excellent tranquilizing drugs and I actually have to say I enjoyed the experience... go the IV Hypnoval! The same Radiologist from the Broadway practice came to oversee it, and was just as wonderful as the day before - he took Tim in to show him what they found and described what he assumed it could be - a Glioblastoma Multiforme - and what the next plan of attack could be which was reassuring for both of us.
The next plan was waiting for transfer to Wellington to the Neurosurgical team which happened on Sunday afternoon, and within the few days in Palmerston North I was inundated with visitors and the positive spirits and attitudes were amazing. I felt ridiculously healthy to have a tumor inside my head, and had no evidence of a headache (due to the steroids I'd imagine) for the entire time.
Transfer to Wellington was via St John Ambulance - one volunteer and the paramedic was working overtime just so they could get me down there... again another service that deserves recognition. This was a much shorter trip than I had expected and I know that Tim was a bit disappointed he didn't get his chopper or fixed-wing ride, but we got there safe and sound and in time for dinner!
Within an hour of arriving in Wellington we were met by a Neurological Consultant by the name of Tim Killeen who arrived with his ipad and showed us the scans (which brought it home for me why the medical team were in a panic in Palmerston North) and outlined what their plan could be. He was very informative and explained with no stress and no bullshit about whether we were dealing with a problem, or a major problem. He explained that I was approximately two weeks out from having a stroke which would have had definite neurological deficits attached, but he also said that if any brain tumor was lucky to have, the position and the 'lobe' it was in was the best place to have it - in terms of surgery access. This put is at ease somewhat, and we were informed that surgery would probably be Tuesday, but the Surgeon would be around in the morning to discuss it further.
Monday morning rounds were an eye opener - the surgeon was a human precision instrument - Calvin Klein from head to toe, with his consultants and minions falling over themselves to be in his presence - very young - although I've never met a neurosurgeon before so I'm not sure what I was expecting... I'm also told he drives a motorbike! http://www.healthpoint.co.nz/default,70603.sm;jsessionid=7B760786C970468503B6316252EF5695?service=70499
He delayed my surgery by a day to conduct a 'stealth' scan - a fancy MRI to plot image guidance for surgery... his concern was because of my being left-handed and the tumor being on the right side of my brain that he didn't want to affect my motor function by removing too much or poking around more than necessary - he explained that it would be during surgery when they decided how much of the tumor they could safely remove, weighed up against me waking up still me... as the right frontal lobe affects mood, memory and personality - and of course my left handedness. So that afternoon my head was shaved in patches and some foam 'fiducials' (tap-washer things) were added to my head in order to act as markers in the scan and surgery. I braved the public cafe that afternoon to have some non-hospital time with my amazing family - the surreality of the situation was evident for each of us... nobody could believe it, but we remained positive and upbeat, just wanting to get the 'job' of surgery over and done and that would be the big problem out of the way.MRI Tuesday afternoon was no big deal - very quick - and Tim was getting very good at rubbing my feet and being a goof at the end of the table to take my mind off the tiny noisy tube I was thrust inside. Then it was a waiting game... I got to see Toby, our 6 year old, who had come down for the day when we got news the surgery had been delayed it was a great opportunity to have a day with Mum and Dad as we weren't sure how long after surgery we'd be able to see him... with my bandages and potential bruising I didn't want to frighten him by bringing him back too soon after surgery.
Surgery day was a blur, up at 6 and last medications - into theatre gown and met the Anaesthetist before we went down to theatre. Saying goodbye to my family was the hardest part, as was the painful first syringe of anaesthetic - think my line was a bit blocked - but I was out before it was fully administered thank goodness. I woke up peacefully - a huge fear of mine was waking up in a panic with tubes in my throat - thankful again that this did not happen. the recovery nurses were wonderful and I felt fantastic on that afternoon - even managing a thumbs up for a photo, and a glimpse of the surgeon as he came to visit later in the afternoon. The surgery itself went well he said, they were able to get 90% of the tumor which he was very happy with - and so were we. I was fine, seeing, hearing, talking and in very little pain so was relieved that the hard part was over.
Thursday was the WORST day... the euphoric medication they had filled me with the day before had well and truly worn off, the right side of my face had blown up and I could no longer open my eye... the pressure bandage was just that and all I wanted to do was sleep. I don't remember too much pain but the swelling definitely unnerved me and cold flannels and witch hazel compresses were the order of the day.It was an excellent opportunity for my Tim, Mum and Dad to get in some long-lost practice of spoon feeding me as I lay flat - it's been a while since any of them have fed a baby!
Thursday was also the day that the Physio tried to get me up and out of bed... I managed to walk slowly to the bathroom, took one look at my face in the mirror and promptly fainted... needless to say I was back to bed for the rest of the day. I think I wasn't prepared for the sight of my face, and it gave me a big fright - I'm such a big baby!
Friday was post-op MRI day - I was wheeled everywhere in the bed due to my previous wobbly day, but was feeling much better and my eye was beginning to open which was a comfort - and better for the balance. That afternoon my wonderful Mummy and my nurse Emily got me up and about 'her way' and not the way the physio tried the day before, which was much more successful and greatly appreciated by myself not to be rushed! Toby came down for the day again to see me - he laughed nervously at my black eyes and told me I needed to stop playing so much rugby. It was a relief to see him as I knew he'd have been processing it all in his own way, but for him to see that I was up and about, and still Mummy made me feel at ease.
The weekend was spent killing time, removing bandages and dressings one by one, and receiving visitors which we were not short of - again - truly grateful for my support network and the people that came out of the woodwork to check up on me... it was amazingly humbling and uplifting. Noises were made amongst the medical team about transferring me back to Palmerston North Hospital for a few days come the Monday, but after assessment from Tim the Physio, Tim the Occupational Therapist, Tim the Neurological Consultant and Tim (the fiancee... obviously a popular name in that generation?!) the decision was made to discharge me into the care of my family and we were allowed to head home into the big wide world. I was very conscious that my Tim was in need of a big rest, having been my rock and spending every night bar one (Mum muscled him out to swap for a night so he could actually go and sleep in a bed) by my side in random chairs the hospital could conjure up, so was relieved not to have to transfer to our home town but back to a hospital. I have since decided that if I ever come into some money I will be donating lazy boys to hospital wards for sure!
The trip home was a ginger one - I was fine but Tim was driving and clearly nervous about his cargo... the sun was shining and after nearly 11 days in hospital I was happy to bask in the sun and snooze and begin to feel semi normal again. Mum had prepared a delicious welcome home meal, and we had some friends to visit and join us for the meal also. We opted to stay the night with the family, taking Toby to school and returning home the next morning.Home was surreal... I didn't particularly want to be there but I didn't know where I wanted to be... I had the overwhelming urge to be doing something but was aware that I wasn't allowed to drive and didn't know where I wanted to go anyway. I think that because I went from 'go to whoa' in a few short hours 11 days previous, I needed to remember that I was still a patient although I was home, and to rest up which didn't come easy. I was pleased to see all my animals were well and happy, thankful for the farming neighbours that stepped in to feed and tend to them while we were away.
Aside from these tangible areas in our previous life, we were very aware that our old 'normal' had disappeared, and we had to set about finding a new one...
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