Monday, April 30, 2012

Just a typical Monday

Today I didn't do much on the exercise front as I had 2 big days in a row and ended up not having as much time anyway as I thought.  I had to go to Porirua for something and so that took up most of my morning.  When I got home there was a lovely surprise - my mum sent a big box all the way from South Africa which was really nice.  We are so spoilt I tell you!  Not long and she'll actually be here and won't have to send things in the mail anymore.

This term Bianca is going to be a bit on the busy side.  I feel confident she'll be able to handle this as it is not all after school activities.  On Tuesdays Bianca will have choir practise at lunch time, then netball after school and then swimming.  On a Wednesday Bianca will have guitar with Paul during lunch time.  On a Thursday at lunch time Bianca will have another choir practise and then cheerleading in the afternoon after school and then on Saturday mornings she will have her netball matches. 

Caitlyn is only doing swimming on a Tuesday and cheerleading on a Wednesday after school.  For now that is plenty for Caitlyn. 

Other than that not much happening today.  Just a typical Monday really.  How was your day?

Sunday, April 29, 2012

Sorry - yet another fitness-related update

Lately it seems all I ever talk about is my fitness adventures.  I guess you can say it is the focus of the moment.  I wouldn't go so far as calling it an obsession just yet, but it is certainly getting a little easier to get motivated to go out and do something.  Other than that there is really not an awful lot of interesting things happening other than what the kids get up to.  I mean I can tell you about the dishes I had to do this morning or the laundry or dinner that I had to cook - but really - that's not interesting reading.  So my fitness adventures it has to be and hopefully it is interesting enough! 

Right now Rose and I are each working on a very specific rather big goal.  I'm not going to share just yet what this goal is because you'll think I've absolutely lost it and right now I can't afford to be locked up in some or the other institution.  I kind of have to put the effort and hard work in.  I will share at some point - I promise.  A bit closer to the time.

After this weekend Rose and I need medals for our dedication and commitment.  Honestly - here we are on a weekend and we are not sleeping late.  Instead yesterday at 9am we were out running and this morning I met Rose at 8am at her house so we could cycle to our training session.  Usually it would be a Saturday training session, but we changed it to a Sunday as the children's winter sports will be starting now and next week Saturday we'll be up early to support Bianca at her first netball match. So now we meet our coach on a Sunday morning and at this stage we are doing a running session one week and a bike session the next.  Later on she'll throw sea swimming into the mix (but for now that would be too cold).  This morning's session was a bike skills session. 

So around 8am we left Rose's house.  Murphy decided to throw all she could at us and not long after we left, Rose's bike seat came loose and went right down making for a rather uncomfortable ride for her.  Then Rose's gears started acting up a bit which meant she could not use her gears on the uphills / downhills and just for fun it started raining a bit.  Oh well.  It was too late to turn around by that time.  I've never cycled from our part of town all the way to our meeting point and it was rather interesting to see the route.  By the time we arrived at our meeting point I had done around 16km (now that is quite the warm up I tell you). 

Lynley then took us on a short ride until we got to a "lovely" hill where we had to go up and down a few times.  This is so we can practise changing gears to get the best out of going uphill (or downhill).  She was happy with my gear changes and said that I'm steady on my bike so I'm pleased with the feedback.  She then took us to do a circuit / block and she wanted us to go around this 3 times to see if we can keep an even pace.  It was hard work.  There was one particularly tough uphill and just for fun we had some wind coming from the front.  After a break (after the 3rd one) we had to do 3 more.  Pleased that I mostly kept an even pace and the second set of 3 I was 3 seconds slower than the first set.  So there - I'm killing myself, but at least I'm doing it consistently :-). 

Then it was time to cycle back home.  So today I did a total of 37.49km.  It was a bit slower than I would have liked to go for most of the ride, but I'm really pleased with doing the longer total distance as that is what I'm trying to do at the moment to go for longer distances.

I was thinking today what a great team I have. 

There is Val our swim coach who works us hard, but is really good at what she teaches and I do feel that I've come a long way since I started.  Half the time I don't realise when I do something wrong so it is great that she is able to then let me know and correct me so I can try and become more efficient.  I would very much like to learn to swim faster, but I'm sure that will come as I go along working on the technique.  It is also really nice that at Friday's session we were 4 instead of the usual 2 (Rose and I). 

Lynley is our other coach.  We first met Lynley when Rose and I were preparing for the Kapiti Women's Triathlon and she was one of the coaches who came to help out.  Usually after the event, that would mean the end of the Saturday training group, but a few of us wanted to keep going.  Especially now in the winter it will be good for keeping us motivated to keep going.  This time round though we have changed the way the trainings are structured and instead of just going out for a bike ride or going for a run, we asked Lynley to actually focus on some technique and skills with us so we can hopefully become a little more efficient and maybe even a bit better at it.  We're a small group of ladies, but it is a lovely group and really supportive which is really nice. 

Speaking of that -  It is really nice to sometimes train with others.  I never thought this, but after doing the Saturday training for the KWT I realised that it is great to sometimes do things like this with others. 

Apart from the weekly swim and other training groups, Rose is my training buddy for a lot of the time.  Right now I'm working on my mindset (which isn't always as strong as it should be) with runs especially so that I keep running (and no walking) whatever distance I set myself out to achieve on a particular day and it is much easier to keep going if somebody is with you.  We can't train for absolutely everything together as Rose and I have different goals for this big goal I spoke about earlier and we have different fitness levels at the moment.  But sometimes it is nice to have a training buddy.

A special mention has to go to my friend Paul as well.  He has been incredibly supportive and has been encouraging me to push it harder.  It is great being able to share with him what I get up to and how I am doing even though sometimes I think he doesn't believe I'm pushing it hard enough.  (Not yet anyway).  :-).  With him being so passionate and so incredibly driven with the things he gets up to, it is hard not to feel inspired.  His advice and encouragement really helps a lot!  It is really nice when somebody is genuinely interested in what you get up to and that kind of makes you want to try and do your best and put the effort in.

I think for me, having a great supportive team on my side is making all the difference!

Saturday, April 28, 2012

Saturday update

Today was a bit of an up and down day for me.  Nothing major, just one of those days really.  But anyway...

This morning at 9am I cycled to Rose's house and then we both went for a run.  It looked like it would be a bit rainy, but thankfully it cleared and it was actually quite a nice morning in the end. 

We ran for 5km before we walked for a bit as Rose's ankle felt a bit sore.  We then walked for most of the 5km back, but did some running in between (probably another 1.5km - 2km). 

So all in all about 6.5km / 7km in total and then a 6km bike ride so I felt rather productive.

Tomorrow morning we have our weekly training session with Lynley and it will be some or the other bike skills.  Not sure exactly what those skills will be.  We've done hills and gear changes in a previous session and at the last one learnt about going around corners.  Lynley's sessions are good so I am looking forward to it.  Rose was thinking we'd cycle to our session so I'll need to check with her if that is the case so we can allow time for that.  Should be good as I'm trying to work on increasing the distance that I would typically cycle.  

Tonight Bianca's has gone to a birthday party.  I think pizza and bowling or something.  Little miss forgetful forgot to bring the invite home, but thankfully her friend came past today to check if she would be going, so we had to have a quick stop at the mall to sort a present. 

How has your Saturday been?

Friday, April 27, 2012

A rather tiring cycling and swim session

After the holidays our swim lessons with Val started up tonight again.  Have to admit I felt rather nervous as I was a bit worried I'd forgotten everything she's taught us.  And of course I expected that she would be working us hard. She is good though.  I don't know how many lengths she makes us do in our session, but it is quite a few.  Hard work, but I'm glad we started again.  I kind of missed it.  Usually it is just Rose and I, but tonight we were 4 people and it was really nice!

From this week our Saturday training sessions will be on a Sunday instead as the children's winter sport season is about to start and that means early Saturday mornings.  Sunday's session will be some or the other bike skills session. 

Yesterday I received a new toy.  It is a watch that you can use as a bike computer and this time I should not have to worry about losing it.  So today I tried it out and it worked really well.  With it having a heart rate monitor as well (which wasn't really the reason I bought it) it did show though that I work my butt off (oh no wait, my butt is still very much there...) on these "lovely hills".  They are incredibly hard work still, but I'll keep going.  Today's ride was about 11km.

So how was your Friday.  I read somewhere that the first 5 days after a weekend is usually the hardest... :-)

Hope you'll have a great weekend ahead. Any special plans?

Wednesday, April 25, 2012

Running, computers and muppets

With today a public holiday I kept thinking it was the weekend.  Boy am I going to be in for a surprise tomorrow morning...

This morning I was very good and I went out for a run.  I did a 5km run (without any walking at all) and then an extra 5km walk to get back home.  I changed my strategy a bit.  Normally I would run 2.5km in one direction and then 2.5km back home, but then at one point I would start thinking "boy it is still so far until I get back home" and then I usually end up walking parts of it.  So today I went for 5km before I stopped and walked.  So I'm pleased with it.  Also really pleased that my legs seemed okay.  So hopefully it means I can start making some progress.

At 1pm I had to meet somebody at the mall as we had a meeting to discuss some things.  It was a very good meeting, although did confirm that I am indeed completely crazy - but that's okay.  More on this later on...

Then we went off to Paul's house to help him with their home computer (or rather Terence helped with the home computer - I'm not as tech-savvy as I'd like to be and Terence is really the expert).

So all in all it was mostly a relaxing kind of day.

This morning Caitlyn had a bath and she was singing her little heart out.  Here is her version of "Am I a man or am I a muppet?" from The Muppets movie.  I added another video clip of her playing with a muppet-looking puppet my mum made because I couldn't film her in the bathroom while she was having a bath.  The singing is her in the bath though.

Just if you were wondering - this is the movie version:

Hope your Wednesday was a great day!

Tuesday, April 24, 2012

Friends at school

I wonder how many people truly kept the friendships they had at school.

I look at my girls and the friendships they are forming now and I wonder how many of these friends would still be their friends when they are all grown up.

Now that I'm mentioning this a particular song is popping into my mind - a song called School Aged Friendship that Paul wrote and has on a CD that he got professionally recorded before.  I don't think it is one that we have done as part of his Youtube recordings, but it is a lovely song!

For me - a few years ago I connected with a girl (Suret) I was in my final year in high school with.  At the time we weren't friends.  I remember a photo I took of her and her friend at the one sports day we had.  I can still see in my mind how they were posing for it.  Of course I can't actually find this photo (or the negatives for that matter) anymore.  A few years ago we both "found" each other through Facebook again and then discovered that we both lived in New Zealand.  So since then we've become good friends.

I'm in the 3 row, 3rd from the left and Suret is in the same row the last person on the right
Looking at the above photo while I am in contact with quite a few of them through Facebook, it is only Suret and I that are currently friends as such. 

The friends I did have at school I have lost complete contact with or we have grown completely apart.

At school I never had lots of friends.  I had a small number of friends that I felt comfortable with.

In my last year at primary school a boy in my class and I became really good friends.  A lot of kids thought we were boyfriend and girlfriend, but we were simply good friends.  When we went to high school the following year we both went to different schools and then discovered that our paths would cross to and from school so every day we'd catch up for a few minutes and share little letters we wrote to each other.  We were friends probably for around 3 years before we lost contact which was really sad for me - to lose such a good friend.  We've never spoken since, but I kind of found out through another friend that he is now apparently living and working on a farm or something.

My friend, Neels is the tall one in the middle.  The teacher was my maths teacher.  We were sooooo scared of this man.  In the front row the girl 2nd to the left was the girlfriend to the boy 2nd on the right and the boy right next to the teacher was the boyfriend of the girl right next to the teacher.

Library Prefects.  I'm in the back row second to the right

My best friends at my first high school were Wilna and Jackie.  We did everything together.

Wilna is at the number 21 and I'm right next to her.  This was during a history lesson.  Don't you just love our uniforms...

Library prefects - Wilna is in the front row 2nd to the left and I'm front row 2nd to the right with Jackie back row 3rd from the right
I mentioned it before that the 3 of us thought we'd start a band one day.  Had our band name all figured out and everything.  It would have been rather short-lived I think because Jackie was the only one who could actually sing and play an instrument - so yes, not quite sure what Wilna and I would have done. I did try out for the choir with Jackie (or attempted to), but was so nervous that I couldn't stop giggling - so that was the end of that.  I still have vivid memories of a cake Jackie and I baked for her birthday that turned out bright neon pink as we accidentally added too much colouring.   Jackie and I used to see who could write the longest letters to each other.  I think we got up to about 40 A4 pages.

Thanks to Jackie, this song that she always sang is one that will often pop into my mind

It was rather odd that Wilna and I became best friends.  She was really popular and we were actually quite different, but we were the very best of friends at the time.  I remember listening to the radio to a song Wilna's boyfriend who was in the army at the time dedicated to her.

When we moved to another town 300km away in my second to last year at high school Jackie, Wilna and I tried to keep the contact, but things changed and so we lost contact with each other.

Thanks to email and facebook I have (in recent years) caught up with both Jackie and Wilna and it was really nice to hear from them again, but I think we have simply outgrown each other and we now have nothing more in common.  The initial attempt to be in touch again didn't last unfortunately, but that's life.

Being on Facebook it is funny though - you connect with all these people who you were at school with and initially it is really interesting to find out how they are doing, what they are up to and perhaps even look at their photos, but beyond that, you realise that while you thought you'd always keep the contact with these people, people change.  Situations change. People drift apart.

Every so often one of the friends I had would pop into a dream at night.  Then suddenly I'd find myself wondering where they might be and what they might get up to.  Sometimes wishing we could catch up again (although it won't be the same, I know).  Times like those it feels like yesterday that we were back in school again and there are moments that I remember vividly clear.

With all of this in mind, here is just a little something I wrote today:

I wonder where you are today
I hope that you are well
Maybe walking on a beach
Collecting little shells

Maybe you are travelling
To places far and wide
With not a single care today
Feeling free and wild

Maybe you are settled
With a family and a home
Working hard on your career
Fingers to the bone

I remember the fun we used to have
And everything we shared
And how you wrote me little notes
To tell me that you cared

I remember the dreams
we often used to dream
Life was always simple
Or that is how it seemed

We always wished and always thought
That things would always stay
That paths would simply never part
That each would go their way

Sometimes it seems like yesterday
Oh the stories I could tell!
I wonder where you are today
I hope that you are well

Did you keep any friends you had at school?

Monday, April 23, 2012

Applemoon Tea

Yesterday at one point during Caitlyn's Princess Day, Bianca, the lady in waiting had to invite the king to afternoon tea.  Sarah prepared an invitation and so the lady in waiting was sent out to formally invite the king to join us at the royal feast.  So off Bianca went and then started reading "Princess Caitlyn would like to cordially invite King T to applemoon tea".  Not sure what Bianca was seeing on the invitation, but that's what she read "applemoon tea".  So from this moment afternoon tea shall officially be known as applemoon tea :-).  We had a good laugh at that.  Later on Sarah was telling us how the queen of hearts in Alice in Wonderland reminded her of one of her teachers and Bianca said "your teacher was a cartoon?" 

This morning school started again.  Not sure how the teachers felt being back after the holidays, but us parents sure were happy.  In fact I've been looking forward to it since the first day of the holidays ;-). 

Since Caitlyn banned me last term from dropping her off or picking her up at her class, I dropped the girls at the gate and then this afternoon met them at the playground.  It seems both had a great day although you typically get "I can't remember" or "nothing" when you ask what they got up to. 

This morning I also decided to take advantage of the fact that I was child-free and so I went for a bike ride.  The route I took has some tough hilly bits (well tough for me anyway). I knew it would be tough.  It always is.  But I've been told by both Paul and Lynley (my Saturday morning coach) that I need to include uphills.  Why does nobody ever say "make sure you include some downhills in your training?"  Normally I am told "no pain no gain" and right now I'm waiting for the "gain"...  But I'll keep at it. 

At one point after struggling with a few uphills that were fairly tough on my legs, I saw a lovely downhill ahead.  About halfway down I suddenly realised that it would be a pretty tough uphill going back home - oh well.  Too late.

The ride today must have been about 15km in total, but I can't be sure since I lost my bike computer last time.  Am waiting for another one that I ordered that should be here in a day or two.  Hopefully.

After I got back home and had some lunch I baked some biscuits and did a few things around the house with Elliott Smith as company in the background.  So it was a fairly relaxed day today.

I am hoping that our swim lessons will start up again on Friday and I'll have to fit in a few extra sessions during each week as I have a swim race coming up the end of this term and I am determined to make my highly competitive competitor work hard for his victory.  Anybody knowing Paul will know just how competitive, driven and determined he is with anything he does and I think I'm going to have my work cut out as he is significantly fitter than I could ever dream to be.

How was your Monday?  Hope you had a great start to the week. 

Sunday, April 22, 2012

Lyrical Sunday - If I could...

Joining in with Latte Junkie's Lyrical Sunday.

If I could be a princess for a day...

I'd cash in my very special princess voucher

and my fairy godmother will magically appear with a list of special princess duties.

I'd get a very special crown

and help the king with his crown.

I would crown the king as he sits on his throne

and watch the lady-in-waiting make her special hat.

We would go on a treasure hunt

and look for clues

until I find a very special outfit just right for a princess.

I would get my nails done so they look all sparkly

and get special make-up done.

 Then it would be time to do my hair

until we finally put the finishing touches on.

If I could be a princess just for a day...

I'd make special princess cupcakes

for a royal feast.

 Afterwards we'd practise our walking

and practise our royal wave.


We'd build a special puzzle with a very special message

and get a very special certificate to finish off a very special day.

Thank you Sarah, for making a special dream come true.  Caitlyn loved being a princess for the day!

Saturday, April 21, 2012

A few updates all in one

I just want to say thank you to those of you who left comments on my post on Thursday.  Next week I will probably send off a letter to let somebody in a management position know my frustrations. John, sadly we've been there done that with a group of parents writing letters to the government and sadly it didn't didn't go in our favour.  It is a fight I've been involved in since 2007 and the reason we relocated to another city in 2008, but due to work commitments had to come back in 2010.  Bridget also confirmed (sadly) exactly my argument that the blood tests are so much more important than this what this doctor said.

After Thursday's long and rambling post all about the frustrations of Wednesday's hospital appointment, I've not had a chance to sit down and update.  So I'll do a bit of a catch-up today.


Bianca had her cheerleading session in the morning and in the afternoon Caitlyn and her friend Lily got to try it out for the very first time.  Lily had a sleep over the night before and from the moment they woke up the two of them counted the hours until finally I announced that it was time to get ready.  Oh the excitement!  Both of them absolutely loved it and Caitlyn will definitely be doing it this coming term.  So now Caitlyn's cheerleading session will be on a Wednesday after school and Bianca's on a Thursday.  Bianca has a friend from school who will also be doing cheerleading on a Thursday and it sounds like I'll be dropping the girls off at 3:30 and the other mum will be picking them up again at 5.

Practising doing the splits
Doing some moves they do in cheerleading
Trying to do a bridge with a little bit of help
Big sister helping little sister

Very first actual cheerleading:


It was Bianca's last day of the cheerleading school holiday programme and it was also the day where they had a mini performance to show the parents what they learnt in the 4 days leading up to Friday.  Both the younger and bigger girls of the morning session did really well considering for a number of them this would have been the first time they tried it out.  Bianca absolutely loved it and can't wait for the term to start and for the next holiday programme.  So much so that she has now decided she will have a cheerleading birthday party.  So we'll see if and how that might work.

Friday afternoon I was busy helping Paul with things we are working on for one of his little projects.

In the evening I went to the Lembas Cafe where LoudWhisper performed.  They did a whole lot of covers and were really good.  Of course I was also there in my capacity as videographer (ooh, now that sounds so fancy when actually I was just using our little digital camera's basic video function and did nothing more than push a button) as Paul had a guest appearance and got to do 3 of his own songs.  I really liked the songs Paul chose to perform (especially since they were my suggestions ;-) ). and overall it was a fun night out with great entertainment. 


We had our Saturday morning training session and this morning's was a run skills session.  We focused on good posture, cadence, running drills and core strength.  I have a feeling that I'm going to be a bit sore tomorrow.

Then it was time for Caitlyn and Bianca to go to a birthday party which both girls absolutely loved.  It was a fairy shop and it has such cool things for girls in that shop - all things dress up and fairy and they have this little party room at the back of the shop that is beautifully decorated.  Really magical.  The whole party is run by the people who own the shop and they do things like pin the wand on the fairy, pass the parcel, doing magical make-up and stickers, fairy dust and kids get to make a magical wish.  Caitlyn wished for a wiggly tooth so the tooth fairy would come and visit.

Caitlyn had to go back in the afternoon for a second party at the same venue and she absolutely loved it (again). It was again a lovely party, but by that time I was a little partied-out and ready to come back home.

And this is pretty much where we are now.  I hope your Saturday has been a good one.  What did you get up to?

Thursday, April 19, 2012

So this is what happened...

Thank you for the comments on yesterday's post and photos that I shared.  Today I thought I'd share a bit more info on why yesterday was so frustrating for me.

Yesterday we planned to arrive prior to our appointment so that we could get Bianca's blood test done, hopefully with the results ready in time for our appointment.  This is how it has been for us for a very long time.

Usually the results take about an hour and while there might be some info outstanding, the ones important to us are usually ready to be discussed with the doctor.  Things like haemoglobin (red blood count), platelets, neutrophils (the white cells you need to fight infection) and the white cell count.

So yesterday that is what we did (as we did all the other times).

We got there, I went to the receptionist lady at the outpatients clinic, told her that we were there for Bianca's blood test and she asked "did you bring your blood test form?" "uhm...actually we didn't get a blood test form".  Usually it would be on Bianca's file and whether that is the process or not, this is how it has been since we arrived back in Wellington in 2010.  She looked on Bianca's file and it wasn't there then asked me to have a seat so she could go and chat to the nurse. 

We then waited.  Bianca was playing around with some of the toys there.  And we waited.  And waited.  And waited.  And waited some more.  And the more I waited the more upset I started feeling as nobody was telling us why the wait was so long or what was busy happening. Finally after about an hour had gone past, the receptionist lady came to me to tell me that so and so was only going to do blood test forms at 10am which was the exact same time as our appointment.  Not even an apology that we had been waiting an hour.  By that time I was feeling pretty angry.  They have known for 3 months that we would be coming and nobody bothered getting the blood test form ready before our appointment date.  They made us wait an hour before finally telling me what was busy happening.

When it was our time to see the doctor I kind of gave him a piece of my mind and shame, I actually felt a bit sorry for him because it wasn't his fault the form wasn't there - we've never seen him before.    But by then I've just about had it.

He was a really nice doctor.  Just a general paediatrician I think.  He seemed pretty thorough although I wasn't sure why he checked some of the things he checked.

Now this is where the second part of my frustration happened.

Some of you might know that we are in a shared care arrangement with the Christchurch hospital.  Effectively this means that we don't have our own paediatric oncologists, but the Christchurch oncologists are supposed to come according to some or the other schedule. It also means that all newly diagnosed kids will initially be sent away hundreds of kilometers away from home.  Some go for a few weeks, others might be away from home for months.  It is really pretty sad and heartbreaking and incredibly stressful.  The health minister pays for the child and 1 parent / caregiver to be sent away, because of course to them we are nothing more than a number.  So now parents not only have to deal with the absolute heartbreak and shock that their child was diagnosed with cancer, they now also have to face being split up as a family at a time when you really need all the support you can get and of course in Christchurch these families also have to deal with the stress of all the earthquakes and aftershocks that's been happening there.  It is the Child Cancer Foundation who would pay if required so that the other parent and possibly siblings could go along to try and help keep the family unit together.  And CCF doesn't get any funding at all.  For CCF it is important that you never feel alone.  To them you are not just simply a number.  So yes, effectively this is how this so-called shared-care arrangement is working.  Or at least this is what it seems to me because I struggle to see the benefit of this "solution" the ministry signed off on.  To me it has always simply felt like they were trying to cut costs.  I've never had faith that this arrangement worked effectively and safely, but that's just my opinion.

It would seem that Bianca doesn't really get to see the oncologists anymore and that she is now only seeing a number of random registrars and paediatricians.  And it always seems to be somebody different.  This is a worry to me because there is no way you could form a relationship with a doctor if you never see the same one.  How will these paediatricians and registrars get to know Bianca?  It would seem they don't even really know what is in her file because each time I am asked the same questions over and over and over about things that should be on her file.  Just yesterday this doctor asked me about Bianca's immunisations and whether she's up to date after her chemo and all I could think about is that surely this info must be on her file, why on earth wasn't he aware of that?

So now it makes you wonder just how this shared care thing is supposed to be working.  Who exactly is the person in charge of Bianca's care?  If I had a concern about something and phoned to speak to a doctor who am I going to speak to?  In Auckland there were a team of paediatric oncologists and registrars and you had one oncologist in charge of your child who would be responsible to make all decisions about your child's care.  There were times we'd see other doctors, but they were all thoroughly briefed on each case on a regular basis and you never had to repeat info that should already be on file.  That to me is shared care.  Not what we have here.

So now if we mainly deal with general paediatricians and registrars - just how experienced are they with paediatric oncology?  Would they miss something important?  Or dismiss something that they should be concerned about?  As I said this doctor we saw yesterday was very nice.  He had a lovely way to deal with Bianca.

When I discussed my unhappiness about the blood test situation and that we usually do this prior to our appointment, he looked at me and then said "oh well, blood tests are really just a minor thing in the grand scheme of things.  Bianca looks very healthy".  Really???!!  I know of kids who relapsed and the only indication was an abnormal blood test result.  They appeared all happy and healthy.  He told me that nobody ever does their blood tests prior to their appointment with their doctor and I disagree with this.  Since 2007, that's always how it has worked.  We do a blood test, wait for the results and then see the doctor who would then discuss these results with you and answer any questions you might have about it.  So now I don't know if this doctor expects us to wait 3 months every time if we felt we wanted to discuss blood test results or what his idea is about this.  He kind of indicated "well you do get a letter in the mail after your appointment don't you?" and we do.  But once again that means we'll end up waiting for however long and then who are we supposed to be calling if we don't even know who is in charge of Bianca's care.  So I don't think he really gets it from a child cancer parent point of view.  It kind of felt like he would see an oncology child's care as no different to that of a child with a mild cold or broken leg or something. I might be wrong, but that's how it felt.

I discussed another concern I had and this too he totally dismissed and based on his argument it was pretty clear that he actually has no idea about the particular drug and possible late effects that it might cause. 

I will say one positive though - he was the very first doctor since we came back in 2010 to explain to me that at the end of our appointment whichever doctor we see is supposed to give us a copy of the blood test form.  Not a single other doctor, registrar or oncologist has done this since we've come back in 2010.  Not a single person has ever explained the process to us despite me asking.  Nobody seems to know what the other person is doing and I know there is one person who sets up the appointments, but I honestly can't tell you what she looks like or where she is located.  All we get from her is a letter in the mail with our next appointment date and no other information.  So yes, I find their processes and systems completely disorganised and it is almost as if nobody cares whether you know all the info or not and nobody seems to want to take ownership for that.

I am really really glad Bianca is not still on treatment or just off treatment because it just doesn't feel "safe" to me.

Wednesday, April 18, 2012

What a day!!!

Today turned out to be incredibly frustrating and all I can say is that I really missed the way Starship in Auckland did things and that right now I am thankful Bianca is not on treatment or just off treatment anymore because I honestly am not convinced that child cancer patients in Wellington received the best care.  But anyway. 

I have no idea what Bianca's blood test results are like and will have to ring them tomorrow to get it.

Here are some photos I took today:

I took a book along to read on the train to the city, but didn't end up reading it.

Waiting at the station and not impressed that I took a photo.

Still early in the morning.  Yawn!

It was the first time I went on the train that Terence normally takes to and from work.

Rather comfortable inside.  Bianca was watching a movie.

The view at one part of our journey.

Just in case you wondered...

Waiting for the bus to take us to the hospital.

Just in case you wondered what part of Wellington city looked like.

Waiting...waiting...waiting...waiting some more...

Checking weight

And height

And blood pressure.  When Bianca was first diagnosed she was absolutely terrified of this machine.

On the way back home.