Thursday, November 26, 2009

There will always be enough

It just feels right to give Thanks this morning. Jacky and I have always believed we are blessed and that we have much to give Thanks for.
It is 6.39 am Friday 25th November. Jacky is in hospital and Kas was her sleep over mate last night. Thank you Kas.
Since her major surgery 31st July it has felt right that each night she has been in hospital we have a close friend or family member stay overnight with her, and ward 14 have always been accomodating for us in this manner. Yesterday a spare bed was brought into Jackys room which will make a welcome change from the electric blue vinyl lazy boy chair that I have spent so many nights awake in. Thank you Ann and the nursing staff of ward 14, for everything.
Thank you Pen, Rhonda, Chox, Meegan, Janine and Deb for doing the over night vigils whilst we travelled hell in ward 23, and all of the other things that individually and together we could thank you all for. Thank you Jem for your boys, and your Dad, and for the compassion, dedication and love that you threw around us and still do. Thank you Sam. Thanks dear Amber for being a constant light and source of beautiful energy that Jacky has always adored. Thanks Em, Bern and kids for being our favourite town stop over, for just being there Em, for so long now. Thanks Mim for the music and for understanding, or trying really hard to, and for the play dates - whenever we can fit them in. Thank you sister Jan for the love. Thank you Tristin, Matty and Mills for being yummy neighbours and for 'baking' baby Monty, and of course the massage, the healing massage. Thanks Gez for being the big guy that always backs my wife and I, and for co creating two of our shortest and lovliest friends. Thanks Sue and Chris for the chocolate fondue, and the scarves with the softest feel in the world - how they have cradled both Jacky and my necks from winds. Thanks Emmarina for being the most staunch, soft and beautiful woman that you are. Thanks Laura for turning up just when we needed you. Thanks Reuben for always being a rock for Jacky and I no matter what, Jacky adores you, and you and me - well we have an understanding eh? ;) Thanks to all the whanau here and those who are not here physically, but are in spirit -Jacky gets great strength from you all, and so do I. Thank you to Roger and the team at Waikuku School who have proven that you cannot beat a small country school for heart and warmth and who have cradled Pirika and Martha through this journey to date. Thanks to everyone in our community who has baked, cooked and nourished our whanau - the out pouring of love has been incredible, and something we will all never forget. I would want to mention you all and can think of at least a dozen more names right now, but do not want to risk offending anyone by missing them out - you know who you are and so do we, and we deeply and sincerely Thank you for caring for Jacky and for us all. Thank you to everyone who has given to us in so many ways from kai to financially sponsoring Jackys hikoi/journey that we share with her.. we honestly could never Thank you all enough.
On that note - I will sign off. Much to do, get ourselves ready for school and then off to ward 14 as Jacky and I have a meeting with Fiona the Maori Health advocate at 10am today. Big day today, on many levels.
I feel I had better quote Jacky as this is her blog...I'm just a fill in - trying to do her justice...
" There is a Maori proverb that encompasses my passion which is “He aha te mea nui o te ao? He tangata, He tangata, He tangata” – “What are the most important things, tis people, tis people, tis people.” "

Wednesday, November 25, 2009

Ward 14 ChCh hospital,

Tomorrow morning Thursday 26th November - Jacky is going to be re admitted to ward 14 Christchurch public hospital. She has chosen to do this herself (in consultation with our family GP) as she really desperately needs to get her health sorted,or more specifically right now her leg sorted. It seems that the wait to see a specialist privately is a longer journey that it is to be readmitted into the public system to hopefully get the clarity she needs on her health - to plan a way forward. Jacky has lost the use of her right leg and is, as predicted by the Auckland Drs, in agony with it. She had a scan on Monday that confirmed the DVT is "persisting" - or hasn't gone away. The fact that this DVT could have ended Jackys life was a huge blow to us both. How many times does one have to face mortality? I was told today that we face our mortality each day when we awake - perhaps - but not as my Jacky is having to face hers seemingly over and over and over. And I detest it! Damn this situation. Damn this cruel pain for haunting my love, whom I still believe IS the kindest person in the world. How can this be fair? It can't. That is the plain and simple truth of it. It cannot.
Today I found the elusive Maori advocate health worker - infact I found an entire team of advocates there to awhi and tautoko (support) Maori patients in ChCh hospital. Jacky and I were told the last time she was in hospital that there was no Maori health advocate in ChCh hospital. I had a lengthy conversation with a woman named Fiona who was staunch, proud and convicted in her manner. All traits that I respect. She assured me and reassured me that her and her team would look after Jacky if she were admitted again, and that they would make sure that all of Jackys needs would be met and, that this time there would be "no bullshit". Her colourful use of language only came about in response to my own as I relayed the reasons why Jacky already has cause for a huge health and disability case against the CDHB.
I pray with every part of my being that this time the medical oath of "first cause no harm" and the word "care" will come literally into play. At least in ward 14 under the charge of superbly professional charge nurse Ann, there is a team of genuinely lovely people who do genuinely care for our Jacky, Pirika and Martha and our whanau.
My mum used to say "where there is a will there is a way". Jacky and I have lived our lives by that simple mantra. Plenty of will - just gotta find the way.
As always - Jacky enters this next part of her journey with positive enthusiasm and is looking forward to moving forward, and to being well again.
Warmly loving you all and eternally grateful for the aroha and support you give us.

xo

Saturday, November 14, 2009

misadventures

Kia ora all,
here I am standing at an internet kiosk on level 5 of Auckland hospital.. at my feet there is a sign that says clearance sale and underneath this, a few random items for sale - one of which is a wall plaque that reads
"the significant problems that we face cannot be solved by the same level of thinking that created them - Albert Einstein"
..
how timely to be looking for answers, and finding this little pearl of wisdom at my feet.
Jacky has DVT or blood clots, in laymans terms, in her right leg. The Drs up here believe this is a result of her 2nd and most major surgery. It is their oppinion that Jacky should have been put of blood thinning drugs as a precautionary measure after the big 31at July surgery,and that if so, she would not have ended up in this situation. Just yet another example of how ChCh hospital has failed Jacky. This "over sight" perhaps, has resulted in Jacky being in intense pain from the DVT, laying in her bed in room 6, ward 73 in this very hospital, with blood thinning drip, IV antibiotics and back on pain relief - which as nasty as it can be, is somewhat of a welcome relief.
This morning we were told by a seemingly lovelyDr/specialist named Jonathon "if I were in charge of your care Jacky there would be a number of things that I would be doing that do not appear to have been carried out in ChCh".. I questioned him on this and he gave us some ideas of how to best manage this when we get back south. I questioned "how could it be that ChCh hospital and the "specialists"caring for Jacky there could have missed the DVT when she has had so many scans and even a full body MRI?" The response was "we cannot comment on that". Of course not - how could one DHB comment on the failings of another, it would not be politically correct to do so.
Again the plaque at my feet rings true in my mind:
"The significant problems that we face cannot be resolved by the same level of thinking that created them" Thank you for the confirmation Mr Einstein - Jacky had already decided that the main specialist who has lorded his egotisical power and cold manner over Jackys "care" for months now - will no longer be doing so. Indeed Mr D - it is time for a new level of thinking. You in your own words had your "one bite at the cherry", infact you had two. Time for a new level of thinking to find resolution and a way back to health.
Are we dissappointed in Wolf not picking up the DVT.. yes. However he did pick up that there was a build up in Jackys groin which is where the clot has risen too from her calf muscle. Still there is an element of disappointment that cannot be denied. It does no one any good to wallow in such emotions though.
Jacky told me this morning - "I could go there babe, easily feel like that, but I cannot afford to. What I need to do is to stay calm, breathe and focus on getting through this."
The Drs here have said that Jacky will probably be discharged Monday (tomorrow), if her bloodwork is reacting to the drugs successfully, and have said that the focus is on stopping the DVT rising further - not on getting rid of it altogether. They have also said that there is no problem Jacky flying home to ChCh as long as her blood is thinned sufficiently. Does that make me anxious - hell yes, however anxiety has become a part of our being, so I will listen internally and monitor the level of mine and Jackys anxiety and we will make decisions based on what feels right. Ultimately Jackys decision. Your intuition rarely fails to let you down we have discovered. Listening outwardly, often lets you down. Life - the great balancing act as Dr Suess described it, in one of our favourite childrens books "Oh the places you'll go".
So, herein is the update - where Jacky is at. If you have her number - txt your LOVE to her, she will enjoy hearing from you. If you don't get a reply, it's just that she has a couple of things on at the moment. Rest assured she will be sending her love right back.
We miss you, all. We long for normalness, for laughter, for our own beds, for our friends and southern whanau, for good drinking water from our taps, for our animals, for fresh easterlies and the sound of the surf filtering through the trees at Waikuku.
For now, over and out. Warmly, on behalf of Jacky, me and all of Us xxoo...

Wednesday, November 11, 2009

Auckland hospital today

Just when we think the physical journey is over... Jacky was this morning admitted to Auckland hospital. Her nephrostomy tubes have stopped working, they may have become blocked due to an infection.. so tonight or late this afternoon Pirika, Martha and I fly to Auckland. Don't know much else so far - except that Jacky is feeling pretty good, is calm and can't wait to see her children :)
Watch this space. I will update this when I can.
Keep the healing prayers, vibes, meditations coming - please.
Warm love, Us all

Sunday, November 8, 2009

Great news is that Jackys hip has stopped dislocating! The relief of which is intense for her. The negative of this is that as soon as her femur settled into it's hip joint, her leg started swelling from the foot right up to her hip and she was in a lot of pain from this. This however has rectified itself - or Jacky has healed this by massage, more movement now she is able to (slightly), drinking lots of horsetail tea, and the magic of Serrapeptase has raised it's head in glory! It really was a beautiful discovery that particular butterfly.
With much discussion we have decided that the easiest mode of transport home for Jacky will be a plane, so tomorrow she is heading to Auckland to stay for two nights with her big sister and Chox is going along as well.
Pirika, Martha and myself tomorrow morning take the hikoi wagon and start our journey south. We will have one overnight stop in Taranaki with Poppa. It will be the first time in more than twenty years that I would have ever been in Taranaki without Jacky. I cried at the idea of two days away from my love, when it has been such a battle to keep her alive whilst in hospital, and to help her regain health since. However, I'm not silly and do realise that this definitely will be easier for her, as well as the fact that two nights in Auckland with Patti, and Chox as well, will be alot of fun and make for warm sister memories.
Jacky flies home late Thursday night, and me and the littles should arrive in Waikuku Beach sometime during the early hours of Thursday morning. It is with mixed emotion that we will leave this beautiful place, there is no doubt about that.
Our dear friends here who have cocooned us with absolute love and care. Sheila, Simon, Ms Nik who have visited us during our stay in Thames. All of those we love who live in Auckland whom we haven't been able to catch up with and wished we could have - you know who you are!
Dear Piki only 2 hours drive away.
Wolf being so close by with his age old wisdom and ability to transform pain and dis ease into something else altogether. The learnings of which we will never forget and of which have changed us fundamentally from here on out. May blessings continue to fall upon you Wolf.
The glorious warmth that is always a part of the weather here - even when the locals believe it to be cold!
The citrus, never ending, plump, healthy and full of juice.
The bush - the incredible gift of Tane Mahuta that is still everywhere up here in the north.
The sweet serene bays that you could dive into in a heartbeat and the fish that you so easily pull from the same bays. The stingrays.
Ae, it is with mixed emotion that we leave and head for home. However the love of home will soften these yearnings, as will the delicious folk in our village who are our dear dear ones. Yes Kuku - here we come and we look forward to breathing you in, and sinking into you again.
The physical part of Jackys hikoi is nearly over, however this is really just a chapter, this journey will be never ending we feel, and it is a good good hikoi.

Warmly, Viv, Jacky, Pirika and Martha xxoo

PS - our Darcy - we will be home for your birthday. It would be lovely to see you. We love you. xo

Wednesday, November 4, 2009

Wolf today

We arrived at the house of Wolf only to discover that we were an hour late!! It was gutting as he had people arriving only 20 minutes after us however he still worked on Jacky for 55 minutes.. Wolf said that due to the huge amount of "chopping" the Dr's did, that Jackys muscles have been constantly spasming trying to move and fill the large space in her abdomen that used to be filled by organs.. he said that the constant muscular spasming and pulling had stretched and strained the connective tissue around Jackys hip to the point that it had torn apart.. therefore there was alot of raw nerve damage that was now regenerating itself. Each time we have visited Wolf he has quite literally been rearranging Jackys muscles and each time the void is being filled a little more. Todays session was spent by Wolf putting Jackys femur back in her hip again (he taught me how to do this), rearranging her muscle groups, and other healing in his own medicine man way. He told us that Jacky has a bacterial infection caused by the inserts (nephrostomy tubes) and that this is keeping her bodies acidic level at around 50% which is slowing the possible healing process down.
We are looking into Jacky having an ultasound scan so we can see if her uretas are open so that the tubes can be removed. I may have explained earlier that this is a difficult undertaking as once you are in the hospital system it appears your body and health, is controlled by the medical team that has "processed" you, in a manner of speaking. Another chapter in this project.
We see Wolf again tomorrow morning and he will spend a short time "rearranging tissue" again and then we make our way, slowly, back to Thames.
Last appointment with Wolf will be this Sunday. Jacky is also taking a remedy to increase elasticity in her tissues and by doing this the muscles around her hips should tighten more easily and keep her femur where it belongs. Hallelujah to that idea.
Tonight it is Guy Fawkes. It is raining here so we are sitting in hikoi van watching "March of the Penguins". You can be out in the rain here and get wet and you are always warm - I love that. Being warm, there is a richness in that. Pirika and Martha have sparklers however will save them for tomorrow night in the Thames Auntys backyard. We wonder what all our Canterbury whanau and dear friends are doing tonight? As well as loving where we are we do miss you all. Before we know it we will be home again, the same, but richer, more humbled and more grateful. Warm love from Us to you all. xo
PS. Nicole - every time we drive through Paeroa and past the BIG L & P bottle - we think of you :)
xo

Tuesday, November 3, 2009

Still in Waihi and the crevice
















Last night and again tonight we are staying in the Waihi Beach Top 10 camping ground, as the great house that we were so kindly able to use for the last four nights is no longer available. This camping ground is outstanding though. It has a heated pool, a spa, a sauna, pet eels just like at Willowbank in ChCh that you can feed, and we are again surrounded by pohutakawa and gorgeous birdlife.. Pirika and Martha have been having a ball - the pool has a water slide/mini hydro slide so they have been hurtling themselves down that all day yesterday and are doing the same again right now as I type this . I think we may have scored the best powered site in the entire campground as we are about 20 steps from the pool and spa and can sit in the campervan and easily supervise the littles frolicking in the water from the campervan window. The beach is about 2mins walk away and it is a glorious beach. Lots of exploring live rockpools and dark stone formations. We got you a rock from here Amber :)
Less idyllic than the above is the damn sciatic type leg hip pain that Jacky STILL has. She can hardly walk with it. Appears to have floored Wolf even how long this is taking to heal - although he keeps telling us that the nerve damage was quite severe so therefore it will take a while to repair. Still very disheartening after being here for 2 weeks. My poor love is handling it so well - mostly. Although any of you who have suffered with constant pain of any kind know well that it GETS YOU DOWN :(
Jacky is going to have accupuncture this weekend from a friend of lovely Kates and will hopefully get some relief from this curse. We see Wolf again this morning and he can literally make pain disappear by laying his hands on you. This may be our last visit with Wolf today as next week we have to make our journey southward - heading for home.
I would have to write for hours to tell you what we have learned so far on this hikoi, of how just 5 minutes of giggling from Pirika and Martha alone has made it all worthwhile - and I can assure you they have laughed alot more than that! Oh how these dear babes deserve to laugh.
We have learnt a pile about nutritional and cellular health and have been constantly reminded of how our bodies are just machines that carry us through this lifetime.
Last night we discovered whilst online that common side effects for the bloodpressure medication that Jacky is on "metoprolol" are sleeplessness and pain! Jacky has not been sleeping well at all since coming out of the hospital, how beneficial it would have been to have been told that she could experience this, and pain?! Jacky certainly needs no more negative energy added to create pain. Western medicine (SIGH) it has it's place, undoubtedly, however it is so vicious in its ways. I will always remember after my brother in law died from cancer, after months of chemotherapy treatment, my sister Jan saying to me "you know, I think sometimes we treat with machine guns when we should be using butterflys".
We believe we are working with butterflys and although not as fast in actioning the effect as the couterpart machine guns, butterflys work in collaboration with your body and its vast systems, and slowly but surely, wellness is able to return.
Last night I found a natural pain killer/anti inflamatory "serrapeptase". It has been used widely in Asia and Europe for 30 years and has no known side effects! Relief from pain commonly occurs as quick as within 10 days. It is made from an enzyme from the gut of a silk worm, I know, I know - I can hear Gez saying "how the hell did someone discover that?!" I'm not sure, but they did, and this is the next butterfly that has flown our way and landed in the hikoi van. Finger toes and everything else crossed that some relief will be found in this medicine. It should arrive in Thames tomorrow.
Off to see Wolf now, back to Thames tomorrow - warmly, Us all
xo...