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

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

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 

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

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

  

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

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.