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Paulo's Journey

  • Sadness & Change

      19 August 2018

    Just over 4 weeks in … sadness is a daily struggle which i push on through with the Love Paulo & i had and the Strength he displayed during Our Cancer Journey.

    Sadly Systems & Bureaucracy heavily impact on the Grieving process in a hugely negative way.

    I have felt so demeaned, undervalued, ignored and mistreated thoughout my experience with MSD,local MPs and the lawyer, at such a traumatic time in my life.

    I have not only lost a husband ive lost my Best Mate, my sons Daddy … im now a “Solo Parent” that was never signed up for!

    It took me over 20 years to find my “Family Man” and now hes been taken away Forever from his daughters & son and Me!

    Not only have we lost a truly loved one but our lifestyle our routine our family home has become only Mum & Son … no daddy … Zayne is finding this tough now !

    The Permanence of his absence is showing in every day life. Its not fair!!!

    I now have a huge change financially to contend with … an apparent $60k + Drop income to cover the costs we initially comfortably covered between 2 Wages however then down to one then to none. Now its Sole Parent Benefit … not treated with any compassion care or particular concern as to how this impacts ne!

    Nothing prepares you for shame , vulnerability & utter sense of loss you feel sitting in those offices.

    My life has been turned inside out literally … nothing will ever be the same :(

    My biggest challenge aside from the Procress of Grief is the Concept of being a Sole Parent with heavy financial losses!! That just sux and is destroying me inside.

    Any contributions from now will go toward Our Monthly outgoings & to maintain Zayne recreational classes and his Transition to School & associated cost in September/October .

    Just please if we could keep the Cause moving to orovide Zayne & i with a little more support that would valued and greatly appreciated ❤️

    Mich love Angie & Zayne

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  • Time for Peace & Love

      19 July 2018

    Most of you will know now that Paulo passed away very very peacefully on 17/07/18 at 3.06pm surrounded by loved ones. He kept up a strong fight, and me on (loving) wife duties until the very sweet end … .

    “Hotel California” (my fav song) came out of nowhere, whilst we were playing Bob Marley as he was passing.

    Your generosity & morale has been greatly appreciated & valued during this 10 month Journey.

    Zayne & i have a new Journey to embark on now and your Koha/donations will continue to be valued, for those wishing to offer support.

    R.I.P my amazing, handsome, kind & humble man ❤️

    Much love Angie 💕

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  • My Man

      8 July 2018

    The Journey has been long & perhaps not long enough, however Paulo is seeking “Peace”. My strong Man is tired… he soon will choose his time to Cruise into his next journey …

    Our time together is now time precious, my heart is breaking … however will be kept strong by the Unique and powerful Love Story we have become known for …

    Little Zayne will keep me laughimg daily i know …

    As I relaxed in the wonderful bath i was spoilt with in candle-light & a Peach Cocktail … it came to me

    “Take the strength being given to you & be guided by the strength”

    Much love 💕

    Angie & Paulo

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    • 08/07/2018 by Buchi Kamitondo Childhood Association

      Hugs Ange and Paulo

  • Downtime…

      2 July 2018
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    Just a short note keep you all in the loop…

    Paulo & i have now taken residence at Totora Hospice as from today. Purely for symptom management, rest & recuperation … for us both.

    The journey remains challenging however Paulo remains stubborn & resilient!! Actually in truth… incredibly Brave, modest & hopeful…

    One day i will write about this journey and what i believe to be unnecessary obstacles and added stresses i have had to endure along the way simply because “Systems are under funded, poorly managed & not working!”

    Anyway …

    Paulo will hopefully be home in a few days. Please well wishes, words of honesty are welcome!! Keep us in your prayers, Zayne & Paulos girls Kaneesha & Akasha, and our whanau all needing love & strength too.

    If youd like a mail address please email me

    angielakau@gmail.com

    Love as always Paulo & Ange xx

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  • Family

      10 June 2018

    We did it! We made it to Niue!

    This was an impromptu Trip that was hugely important to Paulo & his girls, Zayne & I.

    Paulo has always dreamed of taking his girls away, and we always said we would take Zayne to Niue…

    There was a moment or two where i wasnt sure we would even get there but we did!

    It was truly beautiful & peaceful just what we needed although another few days would have been ideal! We had tears when we left we felt we could & should stay forever…

    Paulo is tired … tired of Drs, tired of medications and now trying to manage pain…

    Im no longer working i need to be home with hubby …

    Hes my love, my life and I just cannot justify working over being at my husbands side … keep praying for healing, strength & peace xxx

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  • The fight is real

      15 May 2018

    This ugly beast is making this battle more real than ever !

    We will not give up ! There is too much love and goodness in this man of mine! He is not surrendering!

    The Battle is on! and my Templar Kinght is braver stronger and more stubborn than you know !

    Take this Ugly Beaat down Paulo!!

    Your troops are in this with you every step of the way!! 🎠🛡⚔️

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  • The Back to Life & Living Journey

      7 May 2018
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    Chemotherapy is now a thing of the past & Paulo is ecstatic about that!! “Best news ive had in 6months!!”

    Sadly that Toxic Crap has done little to destroy the nasty cells but rather wear Paulo down with side effects & symptoms … so he has made the decision No More Toxic Crap!!

    We are discussing Alternative Health Options with friends in that Health Sector.

    Our Journey is now about making the best of the time we have, appreciating all the love & support we have for each other and from those around us through this difficult Journey.

    We appreciate there are those that may want to share words of support (particularly those from DCCM) but dont know how. I have just decided i will deliver a Special book to DCCM for those lovely thoughts to be shared to Our Family …

    Much love & gratitude from Paulo & I. We will now be focused on Our New Journey of Living Life however Paulo chooses to do so… ❤️

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  • CT time

      1 May 2018

    Sooo

    This will be the Tell Tailing CT … we’ve not had much good fortune with CT & bloods thus far. A somewhat stable last CT then thrown off by incredibly elevated CEA levels!

    Paulo is incredible at not dwelling on numbers/results and rather listen to his inner voice and do what he feels is best.

    We are now 6 mths into Chemo on 2nd line of treatment with this Chemo (Folfox) being the only “chemical” option available. Symptoms/side effects are becoming troublesome, although a reduced dose of oxaliplatin last week did reduce the nerve sensitivity to cold somwhat.

    Paulo says “He” is the marker… if he feels positive those around him ought to feel postive… if he is low then we can feel low.

    Again i dont do so well on this front! Its not easy watching your man travel this journey no matter how strong he may be!! But by crikey arent i so lucky he is STRONG 💪

    (Hey must be the good strong woman behind him! Hehe)

    We are now at CT Middlemore going with the flow whilst knowing these results will be the indicator for our future …

    Pray, believe and keep us strong . Angie x

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  • Autonomy

      29 March 2018

    Paulo is currently now on 2nd Cycle of Folfox Chemotherapy, with a total of 9 Folfiri and Bevacizumab completed by him. Treatment started on the 22nd November, we are therefore 4 months in of funded Public and Non-funded Private Treatment.

    This far Paulo has already spent over $40,000 on Private treatment with the understanding this may improve his life span when used in conjunction with the Chemotherapy.

    After some serious thinking and contemplation, Paulo has made his decision to stop the Non Funded Treatment.

    He feels he has "felt" little benefit, the scans and bloods have not demonstrated the promising results we had hoped for, and the ongoing cost is rapidly depleting his personal funds that he would rather utilise in his every day living to maintain a quality of life for himself, and his loved ones around him whilst he has good health to do so.

    The alternative of continuing to deplete those funds at approx $2500 fortnightly until we reach such a time we have no funds left to pay, Paulo's physical, emotional and mental wellbeing by that time unknown and then subsequently Paulo's enjoyment and quality of life is heavily compromised by the above is not appealing.

    No one can tell us "How long is the piece of string" but as one very compassionate and caring Dr said to us is

    "How does that string look!"

    Paulo is so very unique and a remarkable human in his constant compassion and care for not himself but his loved ones around him. I am one super proud and very fortunate wife to have found my True Love Story xx

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  • Finally Some good news!

      24 March 2018

    An unexpected call from our Oncology Conultant late Friday afternoon brought us some relief!

    The Latest CT shows no new growth or increase in current lesions size! This indicates Some stabilization of the “nasty” cells!

    Also CEA in bloods has dropped slightly indicating same.

    The good news has not quite sunk in as we have not had any good news for some time, and we are used to more formal consultations, not phone calls!

    I took time to pray whilst listening to & Waiting for Paulos CT fo finish, thanking those that are sharing their prayers for us amd acknowledging we are grateful and to please give Paulo the good news he deserves after his constant amd unwaning strength, courage, bravery and determination he has boldly demonstrated through the past 5 momths!!!

    Paulo & i sat quietly together on Friday evening to take in and try process the Good news…

    We remain so very grateful for your support, generosity and friendships durimg this journey we are on as a family .

    Much love always Angie & Paulo

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  • Our Own Uniqueness

      20 March 2018

    The road Is getting tougher, New Chemo drug started last week as Paulo bloods are indicating some Toxicity to the Folfiri and also not seeing the drop in the CEA we’d like but rather a rise …

    Folfox which Paulo is now receiving Cycle 1 last week… can cause nerve neuropathy so we are hoping he doesn’t experience that too severely!

    CT this Thursday no comment for that …

    Appointment at SuperClinic last week left us angry, dumbfounded and drained… total waste of our, zaynes grandparents and friends time and so inappropriate i will be making a formal complaint.

    The Private paid Drug Bevacizumab has already cost Paulo $$$$

    He is seriously considering stopping paying for this drug so he can rather spend it on quality of living with his family & loved ones whilst he has good enough health to do so …

    What a screwed up choice he should have to make as NZ Cancer Research has not been sufficient to allow Pharmac to fund this Medication, that is fully funded in Australia (FREE) for their evidence that shows it prolongs life when used alongside Chemotherapy.

    Paulo is one incredible & mentally strong and deeply kind man that deserves the best in life he can.

    The Journey has got a little tough for me so i have pulled out of work committments for this month to be with Paulo and try take a mental break …

    Regards thanks for the love and support.

    Angie & Paulo

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  • Courageously

      21 February 2018
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    Soooo hubby Bravely completed his first cycle of Six Chemotherapy Treatments on Feb 7th, and just managing to avoid having a Code Orange called on himself!! The ‘Take Home’ Chemo Bottle was “lost” and Hubby was delayed going home by over 100 mins!!! Not happy!

    The following CT scan results on the Feb 14th, (we made it a double date with good friends), to assess progress came with mixed results …

    Clinically Stable Bloods Stable with a significant drop in the CEA all pleasing … however Scan results show some shrinkage in some lesions, increase in size with some lesions and a couple of new growths on liver …

    This was not anticipated And has knocked us back somewhat emotionally but more so mentally.

    Paulo has thus started his 2nd Cycle of Chemo and will have a repeat CT in 7 weeks or so.

    There is hope that the new lesions may have developed in the Time frame between his Original CT and commencing Chemo, and not during his previous Chemo Cycle!

    Paulo has been hit a bit hard Psychologically with the Consultation and now the ongoing Chemo so well wishes, morale boosting and prayers are welcome!!

    The Private Treatment in Remeura continues alongside his Chemotherapy to allow us Optimal Treatment and Paulo is tolerating that very well ☺️ Especially with the added choccies, cake and the attentive Nursing Staff 😉

    Thank you once again to all for your thoughts, kindness and generosity.

    Angie & Paulo xxx

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  • New Years

      4 January 2018

    Firstly Best Wishes for 2018 to you all!

    We saw ours in (first in a few years!) with lots of sparkling lights & a camp fire .

    We woke on New Years Day with Paulo roasting hot and a temp of 38.5c this persisted through the day despite panadol so he scored himself a two night stay at the Hotel of Auckland Hospital!

    Despite a significant drop in WBC fortunately he did not become neutropenic and no cause of infection was identified. He was discharged home on the 3rd Jan with a detour past 125 ONCOLOGY for his Avastin treatment. Cycle 4 of his Chemo has been commenced today and we are planning much rest over next 4-5 days following Paulos recent hospital admission.

    Paulos dedication & compassionate attitude to DCCM staff and his patients has returned to him a huge support network which is very humbling and motivating!

    We met a Dr during Paulos admission, who recalled Paulo & that character of his from 2008! He was very thankful to Paulo and his original Orderly DCCM Crew.

    I thought this was awesome for Paulo to be recognised and remembered during a time when he needs it paid forward.

    Love & gratitude to you all once again

    Angie & Paulo xx

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  • Cycle 3

      30 December 2017

    Greetings all,

    Firstly Apologies for no update, its been a busy time of year with lots to contend with.

    Paulo has completed his 3rd Cycle of Chemo on Sat 23rd Dec. He is doing awesomely well physically with minimal side effects. We are continually dealing with Mental challenges and many lifestyle changes which although mostly are for the best still require adapting to.

    Paulo remains positive & encourages those around him to do the same and continue to treat him as “Paulo” not someone with an illness … sounds easy hey but even i struggle with this at times.

    The Donations & Support coming through are overwhelming & graciously received. The funds are being kept for his Private Avastin treatment which is not funded in NZ (free in OZ!!)

    He has 11 x 2 weekly cycles of this and then likely will continue as long as we can afford to pay for it.

    He has 3 more Cycles of Chemo to complete then a CT scan, late Jan which will indicate what happens next.

    Thank you again for all the support and best wishes for the New Year . Angie & Paulo xx

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  • Cycle 2

      14 December 2017

    Apologies for delay in Update… Paulo & I have found the 2nd Cycle of treatment more challenging .

    Paulo is doing amazing at being intuitive with his physical body and learning how to adjust his lifestyle to accomdate .

    We are learning lots of rest, lighter meals and lots of TLC during & a few days post treatment is beneficial.

    After a bit of Refocusimg and time together, He is back on track today and ready to do his weight training !

    Go Paulo ! Xxx

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  • Cycle 2

      6 December 2017

    Into Onesixone today for Cycle 2 of the Bevacizumab. Chemotherapy tomorrow at ADHB .

    Paulo looking and feeling fine and remains positive and unnerved ! 😊

    The Support we are receiving is greatfully received Angie x

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  • Freedom!!

      24 November 2017

    Yay Paulo has completed his first cycle of Chemo & Anti-autogenesis Therapy with minimal side effects, except a few hiccoughs !

    He is loving the freedom from losing the pump today that was connected to him for two days …which he rocked well!

    Steroids for another day then playing it safe for a few days when the WBC count will

    Drop …

    please avoid visits if unwell from Monday to Friday.

    Paulo is very grateful, humbled and feeling surged on by all the support he is receiving … we thank you again for that! Angie x

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  • Day 1!

      22 November 2017

    Today is the day Therapy begins … 5 hrs of it!

    3hrs at ADHB & 2 hrs at Gillies for anti autogenesis treatment !

    Paulo looks well and in an impressive mindset!!!! " Rraagghhhhh Take No Prisoners!!!" He say Angie x

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  • Kick ass!

      19 November 2017

    This week the Portacath goes in & the Drugs begin !

    Paulo says "Bring it on!!"

    Thoughts & prayers … we love you always xx

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    • 20/11/2017 by Sheryll

      Thinking of you every step of the way, lots of love from us all in the UK.

      This page is such a great way to send encouraging messages of support to let you know we love you, think of you and follow your journey xxx

  • Thank you

      16 November 2017

    Thank you for all the Support coming in … Chemotherapy will commence next week … We appreciate and need all the support and wishes to keep coming in. This Journey has only just begun … . Angie & Paulo xx

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  • Consultation

      15 November 2017

    Consultation today … a lot to consider … strive to make the most of the Good Health you have… & let your loved ones see you care x

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  • Beginners Steps

      14 November 2017

    Paulo's full diagnosis was only revealed to us November 3rd so we are still adjusting and coming to terms with it. To reassure you all … Paulo looks well, is feeling well, he is still training and is mentally and physically preparing himself & ready to go into "BATTLE!!" He is "ARMOURED" Physically, Mentally & Spiritually.

    We have an appointment tomorrow with the Private Oncologist & the Treatmemt plan will likely be revealed, wether it be Funded, Non Funded or a Combination.

    A Portacath will be inserted most likely on the 28th Nov allowing treatment to commence, unless we can have it rebooked for an earlier date....

    Paulo has chosen to be off work until the New Year to allow himself to be focussed on Self & Healing, and to maintain his strength & stamina mentally and physically.

    A repeat CT will be performed approx 3 months after first cycle of Treatment to see how effective it is.

    Thank you for all your Support Angie & Paulo

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    • 14/11/2017 by Paulo & Ange Lakau

      Phone calls can pay off ! Portacath now booked for next Tuesday!