Well done Neilly! Emma Paver on 18 Sep 2014 at 03:05
Well done Neil, Emily, Karim & Jenni Guest Giver on 11 Sep 2014 at 01:17
Well done all, and good luck with the fundraising Melanie on 11 Sep 2014 at 00:03
Well done Jenni! Amanda Bolton on 09 Sep 2014 at 01:07
Great job guys Lee on 08 Sep 2014 at 21:58
Well done all! Guest Giver on 08 Sep 2014 at 21:51
Good luck guys. May the force be with you! Mair, Paul, Jacob, Isaac, Noah and Sammy Roberts xxxx Mair Roberts on 07 Sep 2014 at 20:29
Great job Emily! Guest Giver on 07 Sep 2014 at 12:09
Happy Birthday Andrei and good luck to Em and Neil today - you are so inspiring! Much love, Lulu, Eva, Suzanna & Rafael Suzanna Francis on 07 Sep 2014 at 07:19
Faisal on 07 Sep 2014 at 02:16
Richard Sudworth on 06 Sep 2014 at 09:08
Good luck guys xxxxxxxx Jill Allan on 06 Sep 2014 at 08:16
Good luck with the run and the fundraising. X Helen Binns on 06 Sep 2014 at 08:04
Fabulous cause, good luck tomorrow guys! Lots of love xx Lindsay on 06 Sep 2014 at 08:04
Good luck guys, hope there's a tailwind for ya :) Rich H on 06 Sep 2014 at 07:56
Good luck in the race Emily and best wishes to Andrei Matt E on 06 Sep 2014 at 00:46
Good luck Karim! we know how hard you worked for this and how much weight you lost ! All the best xxx Armani team on 05 Sep 2014 at 02:38
Go Neil. You've worked really hard. You'll fly love Andy & Anthony x Andy Galway on 05 Sep 2014 at 01:02
What a great thing to do. All the very best. Will be thinking of you x Tineke Price on 04 Sep 2014 at 07:45
Stuart B on 04 Sep 2014 at 00:52
We are running the Scottish half marathon on the 6th September 2014 to raise funds for Emily's brother-in-law, Andrei's cancer treatment.
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Hi all, just a quick update to say thank you Neil, Emily, Karim and Jenni who are running in the Scottish Half Marathon this week on my birthday, 6th September, while I'm considering if I really need another piece of birthday cake these guys will be no doubt be considering if stopping at the pub on the way to the race would be a better idea? Thanks heaps team, really appreciate your support and that of those who are supporting me via your fundraising, best of luck!!!!!
As an update, all going well, off to Melbourne in October for another scan/followup and maybe one treatment in November TBC.
Hi, its been far to long since I posted an update and thank you to those who continue to provide support, Nathan thank you heaps mate, its an impressive auction.....
Where we are at, the 4 treatments are done, the body seems to be recovering nicely, all be it slowly but its progress. I had a followup scan and consultation with Melbourne last month and progress is good, no new growth, pretty much reductions across all tumour sites and positive progress. Plan is to return to Aussie in October, re scan, if reductions are continuing then leave for a while longer, if slowing then another dose in November.....
So overall all going well, thank you to you all that have supported me in this as it has been a big part in this whole process. It has been reinforced recently how important having this treatment has been to me and my family, another unfortunate Kiwi with NET who had been turned down for funding in NZ, we had been corresponding and he finally managed to get to Peter Mac for an assessment, unfortunately before treatment could be started he lost his battle and passed away recently. Jennie my heart goes out to you and your family for the loss of Ian, another reinforcement that us Kiwis need to have access to this treatment....
Thankyou again, I will continue to update my journey and anyone out there with NET that may be reading this, don't wait, there is options rather than NZ approach of doing nothing, get to Peter MAC or alternatives, I'm a great example that this works and has given me back hope and my life!!!!
Just a quick update post treatment, scans showed that the treatment is working, I have had some reductions in tumour size including the primary tumour that has reduced far more than ever expected! I did not expect to see any changes this early but the signs are good, its working.....
We are back in a couple of months to see the results, the time between treatment and scan will allow the full cycle to take effect, so fingers crossed we may see more great results, further evidence that this treatment is working, as it has done for everybody I have spoken to who is receiving this amazing stuff. Really good outcome, makes all the treatments etc worthwhile, hopefully more Kiwis can start getting this soon!
Happy New Year, it's Tuesday 14th and I am sitting on a bed at Peter Mac about to get my last of 4 treatments, it's come around relatively fast since the first back in September last year but I will certainly be glad when it's over. My blood tests came back to low this time round so no oral chemo, good in someways as they are probably the worse part of the treatment, but not sure if it changes the effectiveness of the treatment but that's out of my control.....
The Unicorn Foundation and Dr Lawrence are putting in an aplication soon to start the process of getting the scanning gear and treatment in NZ, myself along with other patients have put in letters to support the applications, so it's a great start to get the NZ health system to recognise that this is a real issue for kiwis.....
Interestingly after talking to the Doctors yesterday, they noted that in the last year they have treated around 210 patients with PRRT, and the number is growing every year. Some recent research is showing that NET is a lot more common than they once believed, changes in diagnosing techniques means that more patients are getting found with NET than ever before. Ie could be as prevalent as prostrate cancer in guys, scary eh. MOH is going to have to recognise this at some point as more and more kiwis are going to have this!!!!!
Well ihope you had a good holiday season, you all had a chance to spend time with family and friends, because it's one thing I have learnt from this whole process is that spending time with the people that you care about and doing the things that make you happy is more important than all the material aspects of the Christmas holidays.....
I wish you all the best for 2014, thank you all for your support during the treatments, it really means a lot to us and makes a massive difference, not just financially but emotionally. I will keep this going with progress during the following scans etc.
WOW!!! I am back from treatment 3 and it’s been quite a homecoming. Thank you so much to Anna Pearson at the Press and the Sunday Star Times for running such a great story, certainly much bigger that we thought but really great, I hope that its helped raised the profile of NET and that there is HOPE out there for people with this…..
NZ your response has been amazing, not only the substantial funds that have been raised, over 160 donations and $7500 since yesterday alone, but the comments, kind thoughts, prayers and sincerity of you all is phenomenal. Its great timing to come home from a treatment when you feel a bit rough, to get all this positivity, its certainly the best medicine one can be prescribed…..
I have said this before, but things like this reinforce that there are great people out there, people in this country continue to support a variety of causes when the groups like the MOH/Pharmac let us down and it is very overwhelming. We are truly grateful but feel a bit conflicted by this, the money raised makes a big difference to our small family, but the nearly $40,000 raised to date would make such a difference to so many family’s out there.
You only have to look at the variety of worthy causes on Givealittle to see this, its hard not to feel frustrated that in this country that generally does so much, there still seems to be people that full through the cracks, but positively the people of this fine country still stand up for each other when needed, it makes me very proud to be a Kiwi. Thank you all so much, words don’t seem enough to show our appreciation…..
I have also been in touch with New Zealand’s Unicorn Foundation (www.unicornfoundation.org.nz), sister to the original Australian version, who are a group that are working to raise awareness and support patients with NET, anyone out there with NET I would recommend getting in touch with this group. People have shown great support to myself and family and I look forward to being able to do the same to others with this disease, we will continue to raise awareness and I hope my story can show others that there is HOPE, not only to fight this disease, but that there are many people out there who will support you along the way.
Just an update, the media article about this cause is going to be in next weekends Sunday Star Times, they really liked the story so they want to run it as a focus piece which is good news, sorry for those who bought papers this weekend, don't worry, we bought a few.....
At Peter Mac now, started dose 3, all good so far. Have a couple new patients here this time, one on dose 6, his second top-up and this has just about killed all his Cancer cells, another guy story is similar, gone from being in pain, full meds etc to now back to normal life, no pain, no meds, more proof that this thing works which is great. We keep hearing positive news on this treatment which is great for the mental part of this battle. Fingers crossed we will be the same, Thanks for all the support leading up to this treatment.
Just thought I would let you know that it looks like our story is going to get some media coverage, Anna Pearson from the CHCH Press is kindly writing a story that has been picked up by the Sunday Star Times for this weekends run (24th November), its a great opportunity to raise some profile of NET and that there are options available for people dealing with this disease, hopefully we can continue to raise money so that we can help others get to Peter Mac.....
Also wanted to thank the South Brighton Kindy committee who raised over $1000 for our cause, all contributed by our wonderful Kindy family and the local South Brighton community, its a fantastic place here and the effort this team went to is wonderful and we are very grateful. THANK YOU ALL.
I am heading of next Monday 25th November for round 3, on my own this time round but staying with Aunty June so I am sure she will look after me. I've had confirmation that the last session is booked for 14th January so not to long now until it's over which will be good. Same week as the Australian Tennis Open as well, so might be able to share a beer with Roger or Rafael.....
Thank you again, over $30,000 raised so far, a great effort and more events planned with the next one the "ACTIVE FOR ANDREI FUNDRAISER" thanks to Andre and Janina (parents of Alice's best friend Holly at Kindy), they are having 'Get Pumped' classes at the Shoreline Fitness Centre in New Brighton 7 & 8th December, so feel free to crank out the spandex, the John Mcenroe headband, your Richard Simmons dance moves or your favourite matching tracksuit and head-on down, contact Janina.Konia@gmail.com for bookings. Thanks guys, very cool.....
Hi, I just wanted to pass on our big thanks for Keeley and Dean for organising the fundraiser quiz last weekend at the Speights Ale House, also of course the 200 people that turned up as well, amazing turnout and a great effort by all. I have said it before but it is all very humbling that people continue to want to help and show support financially or otherwise. Also thank you to all those who donated gifts for the raffle, over 500 raffle tickets sold, thank you to Storer Motors, Ryan Security, Nicola Hunt Photography, Speights Ale House Ferrymead, The Carlton Bar & Eatery, Shotover Jet Queenstown, Mocka, Precious Pieces, One Good Horse Bar & Smoke and Spice Co for donating prizes. Thank you all again, just for the record our team did not get last and we could have sworn the Ponderous Puzzle question was a hairless badger, not a possum, boring...
Its been a while to write sorry, but treatment two done. Doctors are again happy with the progress, side effects this time seem a little lighter, less intense than last time which is good, few days to go on the chemo which has been a bit rough this time round and energy levels are still a bit average but thats to be expected I guess.....
I had the opportunity to meet with some other patients, 2 Aussies and one other kiwi on his first treatment, ironically from Christchurch as well. All very different stages, one has a very aggressive version and he is on his third treatment and so far some of his tumours have halved in size, so shows although they are different, the PRRT treatment is working for them, hopefully I'm the same.....
As mine is much slower growing then I won't see results as fast, looks like I won't really know whats happening until three months after the last treatment when I go back for scans. Third treatment is the end of November, last one in January at this stage. I am pleased we are halfway there, and off course pleased to be doing this, but can't wait till its over.
I wanted to pass on a big THANK YOU to a couple of groups that have done some fund-raising for us.....
Alice's Kindy did some stuff for us last Friday with the Kindy family, what an amazing group of people. It really reinforces the great community we have in South Brighton that people would help out, even when to most we are complete strangers. Thank you all so much.....
Also last week we went to Ali Harpers show 'Bombshells', really good show, very talented lady. Thank you to Ali for generously donating a percentage of the tickets to us, along with my sister Amanda, Puff for supplying some grog, New World Supermarket for supplying vouchers (great bakery by the way) and Jayne and her team for the labour to sell food and drinks to also raise some money. I have said it before but it is very humbling when people go to so much effort to help someone else....
Thank you all.
A big thank you to the Macbeth's and the team at the Staff Club for their efforts on the recent quiz night, wow, thank you all.....
Well we are on the plane again tomorrow for treatment two of four, a little apprehension but in some ways pleased its happening quick, with only six weeks between sessions, sooner its done the sooner its over I guess. We have accommodation this time thanks to a mates Aunty June, so will be nice to be in a proper house. Not as much to do this time, less tests prior which is good, so just a couple of clinics/scans and the one day getting radioactive again, maybe I will turn into a super hero or something by the end of all this, thats how it starts right.....
Been feeling ok, a bit lethargic etc but for what you see and hear people have to go through with their treatments this one is pretty mild considering really.....
So thanks for your ongoing support and kind comments, will see you following treatment.
I also wanted to thank April and Serena from Alice’s Kindy Family, they recently ran as part of a team at the Greta Valley Marathon on the 21st September and gratefully offered their sponsorship received to our cause, thank you so much to you and your team along with those who supported this, running a marathon is well and truly above and beyond the call of duty, I think I would rather get more needles than do this, maybe… I hope it went well?
Hi, another event is being run, thanks to Ali Harper and her team a nationwide tour of the one-woman play called BOMBSHELLS is being performed in Christchurch and around NZ, as part of the Christchurch shows 22-25th October and 7-9th November, Ali is kindly donating part of the ticket sales for the 24th October show to our fundraising which is very generous. The 24th show has sold out already, but there are other shows available in Christchurch and around NZ, for more info check out www.aliharper.com, Thanks Ali and everyone who is coming, see you there……
ABOUT THE SHOW - Savvy, sexy and exquisitely crafted, Bombshells is a one-woman play which humorously exposes six women balancing the demands of their inner and outer lives with funny and touching portrayals of the modern female. Ali takes audiences on a journey through six shades of the modern woman – in life and love. From feisty teenager to beleaguered mother to a 64-year-old widow who reawakens an appetite for the unexpected; the intensely clever writing wittily strips away polite veneers to reveal social pressures and hidden desires.
Hi, just an update, a Fundraising Quiz is kindly being organised by some good friends based at the Ilam Homestead, a 100year old building that I was fortunate enough to be involved in the EQ repair and refurbishment of this iconic building and home of the University of Canterbury Staff Club (UC is where I work), at 7pm 9th October 2013..... Spiel FYI -
In a slight break from the usual Staff Club quizzes this one is a fundraiser. Andrei Martin was one of the project managers of the extensive Ilam Homestead renovations and he’s an all-round good guy who was diagnosed with a rare form of Cancer in 2012. Sadly there are no treatments available in NZ that can make any significant change to the terminal outcome of this disease.
Andrei was however assessed at the Peter-Mac Centre in Melbourne, where he’s a good candidate for treatments that have the potential to dramatically change the outcome of this disease. Andrei needs to fund the treatment so we’re hoping to put a bit of money his way in the quiz.
There will be a maximum of 18 teams of four so book your table now by calling Charles on 364 2499 or emailing him on email@example.com. Everyone is welcome. Entry fee of $10 per person. Snacks will be provided. Excellent prizes have been donated by Craig, BeerNZ and Alistair, PW Wines.
Hi, just wanted to pass on my additional thanks for the ongoing support, still amazes me the generosity out there, sincerely thank you from all of us. Two weeks after treatment now, bit sore every now and then otherwise not bad really, only 4 weeks and get to go through it again..... Will provide some updates soon about some fundraising events coming up also. Thanks again.
Back in Christchurch now, everything went according to plan, scans etc done and the Peter Mac team are happy with the outcome, its gone everywhere it was supposed to. All going well with blood tests over the next few weeks, they will look at a slightly different, stronger version next time.....
No major side effects which is good, they described it as the feeling when you get a bad sun burn, how the skin tightens etc, thats whats going on so I'm a bit tender and my tummy is slightly larger than normal, but apparently thats a good sign that its doing what its supposed to, no additional toes, fingers from the radiation......
Next date set for the 15th October, dose 2 of 4.....
Howdy, Day 2 of treatment and the main event, I am sitting in the day ward of Peter Mac, 5 of us here, 1 from Tasmania and 3 from Melbourne so only kiwi here. Had kidney tests all day yesterday, long day but ok, more blood tests this morning, my sample is in dry ice and on a plane to Adelaide, some special test to try and pinpoint the type of NET I have.....
Just started the LuTate, 10.21am Aussie time, I am officially radioactive, still have only 10 toes, fingers etc, I will let you know if that changes..... Stuff looks like water, it's amazing what your imagination does, could have sworn it would have been bright green or something, always seems that way on the Simpsons! Bloody weird watching this go in.....
One good thing about being in these places is it makes you feel young, must be 20 years between me and the neighbours, suppose that's a good thing though. Anyway onwards and upwards, let the journey begin!!!
Morning, it's a bit after 4am and we are sitting at the airport waiting for the flight to Melbourne, Abby is having a cup of tea so much happier now after the 3 am wake up. Alice and Milo were dropped off to Nana and Pops yesterday, Alice has a busy week of play with the family and Milo (dog) has already lined up a spot on Nana and Pops bed so they are both happy. Hopefully this time Alice will talk to us on the phone if she has time, last time we were away Nana had to bribe with lollies to say goodnight to us, charming.....
Started the oral chemo yesterday, 5 pills twice a day, for two weeks, so will start rattling when I walk, apparently helps with the stuff I get at Peter Mac. Only side effect so far is that it tastes like I have been sucking a stainless steel nut or something, a lingering metallic taste mmmm, other than that all good. There can be side effects but most go without to much happening which is good, one of the issues can be mass evacuations from both ends, that would be unpleasant while on a plane, probably for the other passengers as well, anyway fingers crossed....
So we have a couple of days to relax in Melbourne, apartment by the beach in St Kilda so will be good, forecast is 25degs daily so plan to break out the jandels and boardies and make the most of a couple of nice relaxing days. Start treatment on Monday, protein infusion over 5hrs to help line the kidneys while the toxic stuff passes through, Tuesday is when I start glowing, if you see a faint light on the horison to the west that's me, will save on power etc as I might be able to plug the tv into me, anyway Wednesday scans etc to see what happened then all going well that's the first treatment. In the grand scheme of things a relatively painless option really, oh yes apart from a flurry of needles no doubt.....
About to board, so thanks heaps for the continued support, really appreciate all the kind thoughts, comments etc the last few days, dinner last night with some friends was a nice way to start this journey so thanks Abby for arranging that....
We will keep you updated with progress, lookout Aussie here we come...
We are booked on the plane the 31st August for the first treatment in Melbourne starting the 2nd September, thank you all for your support financially and otherwise, it is still very overwhelming and a little hard to comprehend really. I am learning that you just have to say ‘Yes’ as people genuinely want to help. I have said it before but there are some really amazing people out there, from close friends and family, extended family, people we have not seen for ages, right out to complete strangers. There now appears to be some events and fundraising activities being planned also, we will let you know more as we find out, but again thank you all…..
As a side note, I had an interesting response from the specialists in Melbourne when I confirmed the funding from Pharmac/MOH was declined, Pharmac’s main concern related to the lack of randomised controlled data, which is the standard response from Pharmac to decline payments, as ‘non-conventional’ treatments rarely have this done…..
The specialist’s comment I thought was interesting: "It's a frustrating excuse that must affect many people across many health issues. If you take extreme examples, such as antibiotics for life-threatening infections or defibrillation (i.e. electric shock) for ventricular fibrillation (i.e. massive heart attack), you will find no randomised controlled data. Everyone knows it works because is there is an indisputable link between the treatment and survival. Similarly, we have treated patients who have been extremely unwell after failing all conventional therapies who are alive and well 7 years later (we commenced LuTate in 2006). In many ways this data is stronger than randomised controlled data which generally compares large cohorts of individuals and looks for small difference in outcomes”…..
It’s a shame because there are others out there in the same situation as me, perhaps Pharmac should consider another excuse rather than relying on this one in the future, especially when there are not any other options for people in NZ…..
Anyway that’s a fight for another day, on the plane in a couple of weeks, getting real now.
From the first visit to Peter Mac it was a completely different experience, they were actually excited to see me. I had some scans done that aren’t available in NZ, more blood tests and it clearly showed everything, a much better picture of what’s going on. My first appointment was with a team of specialists, they asked questions going right back to my early days, the biggest revelation was from the size of my tumours and the fact that are growing at such a slow rate, 3%, they estimated I have had this for over 20 years, crazy really, I guess my perception of what is ‘normal’ is probably a bit misjudged, kind of explains why I never made the All Blacks, I was handicapped from the start, the fact that I did not play rugby is irrelevant…..
The doctors recommended that I am a great candidate for “Peptide Receptor Radionuclide Therapy” or PRRT, which involved 4 cycles (treatments ) of “Lutetium-177 Octreotate (LuTate)” for those who like Google. The science is quite amazing, but in short ‘Almost all cells have receptors on their surface that influence how they work. A receptor can be thought of as a switch that turns on or off a particular function of a cell. In the case of my hormone-producing cancer (NET), there is a hormone that hooks onto a receptor and so is able to enter the cell, this substance is tagged with a radioactive isotope and it can deliver a high dose of radiation to kill the cell’…..
Its basically a radioactive version of the monthly jab I have, at a much higher dose, I will probably glow for a couple of days so have to be kept away from children (no Alice on this trip), I get a oral chemo for a couple of weeks after and have to repeat the cycle 4 times, about 6-8weeks apart, all is supposed to be relatively passive with little or no side effects. I have to go back 6 months later for some more scans, then all going well its an annual event for 1 cycle of PRRT every year after that…..
It is something they have only been doing since around 2006 and only done a couple of places in the world, but it’s a game changer and they have had amazing results, get your life back sort of results. It’s a slow process but what it should do is start killing the Cancer at the same rate its been growing, but for me this is hope, so that’s why this is so important for me and my family. I understand that there are no guarantees, but it’s a chance and we all know the longer you can hang around the more options there will be, that’s a lot more than I would have doing nothing, so Melbourne it is, and thanks to you all as you are helping us get there…..
Hi, thank you all again so much for the continued donations, it is quite overwhelming and gratefully appreciated…..
Part Two of the story so far – So I guess this is where the 5 stages of grief kick in, Denial, Anger, Bargaining, Depression and Acceptance. I hung around Denial and Anger for the next few months, mostly denial and the lack of valuable information and although I know their intentions are right, the NZ doctors approach to just wait and see means denial seems the only logical solution, I have had a bit of a reprieve of sorts with NET, but not knowing if I am going to be here next year or in 10 years is really hard to deal with…..
September was a bit of a blur really, not the best way to spend your 37th birthday (but getting sick gets you good birthday presents) and certainly not the way you want to spend Fathers Day. Alice is thankfully to young to know what’s going on, being in this situation and having kids is probably the best and worst part of it all. I don’t need anymore motivation, but the idea of not being around to see her grow up is heartbreaking, in a lot of ways I actually get out of this situation pretty easy, its Abby and Alice that are left to deal with the expected outcome and that’s what’s not fair, why should a 2 year old have to deal with this, how do you explain that her ‘Da’ was not going to be around, when her sole job is just to be a kid for as long as possible, get muddy, play games, experience the good things in life etc, not get a curveball like this…..
The next few months are just a wait and see approach by the NZ doctors, I have another scan, Abby is still using me as a pin cushion, off to the chemist for the next lot of 30 needles (I have bruises to prove it), I pretty much sleep for about 3 months, as fatigue seems to be the biggest side effect of this. I got sick again in December and they decide thanks to my GP to start me on a monthly dose of Octreotide, something that is supposed to help suppress the symptoms, typical, its delivered by a needle, this time a “Bloody Big One” as my GP put it, the comments “Gee that’s big” and “I am going to squeeze your bum so hard you won’t feel a thing” are a couple things you don’t expect to hear from your GP, anyway he lied, its my monthly “Horse Needle” as I call it, it feels like you’ve got a dead leg, except its in your bum and lasts a few days…..
After Christmas, and pretty much staying in the denial stage, I decide to do some investigation into this NET, info is relatively scarce as its quite rare, I stick to the well known websites as there certainly is some rubbish out there but good, useful info is hard to get, every country seems to have a different approach, and NZ’s seems the most passive. I finally come across the Peter MacCallum Cancer Centre in Melbourne, this is a treatment and research facility that had some specific info on NET and from the start they just seemed different from everyone else…..
So in March at a follow-up appointment in Christchurch, we ask about getting a second opinion, more out of frustration than doubt, you just get the feeling that although our Oncologist here is great, her hands seem tied with a lack of info and resources, I could just not keep going with not knowing what was happening and doing nothing just does not seem right. A referral and notes are sent to Peter Mac and almost straight away they got back in touch and invited us to come over for an assessment, they have scans etc that are not available in NZ, again its not funded but doing nothing and not knowing how long you have left are not options I am comfortable with…..
On the 30th April, Abby, Alice and myself are on the plane to Melbourne (Alice’s first plane ride), we decide to make a holiday of it, spend some time with family (recent escapees from the CHCH Earthquakes) and do the zoos etc. A few days later we got what all people in our situation want, HOPE, and a chance to fight this horrible thing, this was not what we expected from this visit, I went more to get some certainty, but that afternoon following the scans, yes more needles, and some conversations with specialists, HOPE is what we had, and the next stage in this journey began.
As you are all now a part of this, here’s the background to the story so you can join us on the journey, its starts out pretty average but gets better…..
I had been feeling unwell for about a week, think bad flu and an annoying cough, following attending the funeral of my best mates mum who ironically died of cancer, I was told by numerous people how crap I looked, and for the first time I had to agree, so against my male instincts next day of to the GP…..
Initially thoughts was maybe pneumonia, GP did a poke and prod and identified that my liver was enlarged so of to the ultrasound that morning, then ‘The Look” started, when people from the medical profession know something’s wrong but no-one wants to say it, but you can see it in their eyes…..
Back to GP who gets us into the hospital for some scans that day, a restless night in hospital (the first in my life) and late morning then I hear that dreaded word, Cancer, initial feedback was that this is well advanced and there is nothing they can do, don’t make plans for Christmas, so discharged from hospital because I feel fine apart from a cough…..
So something I would totally not recommend, we had to tell the family and friends what’s going on, that’s something I will never forget, Mum and Dad have already had to bury a son which no parent should have to do and here we are telling them they get to do it again. Telling close friends including my mate Dave who just buried his mum from cancer, as well as his dad also having terminal cancer at the time that I am joining the unwanted club was pretty hard. My heads all over the place, Abby is putting on a brave face but I can only imagine what is going on for her, but as always she is there for everyone else, wonderful woman…..
So back home, later that arvo a call from the hospital that they have reviewed the scans and found a blood clod in my lung, that annoying cough, back into hospital and they start me on a daily injection to thin my blood. So if you don’t know, I don’t do needles, the thought of needles makes me crook, its my kryptonite, along with brussell sprouts, so I now have the pleasure of having one a day for the next 90 days, YES 90 NEEDLES and Abby had the pleasure of giving these to me, and as well as she did I would not recommend her if you have options, no offence my sweet…..
From there the next week the trips to the Oncologists start, main comment coming back is that I don’t have the symptoms they expect for someone in my advanced state, i.e. I should be much sicker, so they organise a Liver Biopsy, a much bigger needle this time, a few days later another visit and turns out I have this rare cancer, Neuroendocrime Tumor (NET), same as Steve Jobs (Apple) had so at least I was in illustrious company, the Doctor describe it as there was three potential outcomes from the test, From worst (what they thought I had) to best and this was in the middle, at the time this is the first of many wins to follow…..
So NET is a rare form of Cancer, apparently around 6 cases a year in NZ, often goes undiagnosed for years before they pick it up so luckily this was a WIN, issue was NZ does not know much about this, but the WIN was that patients can live for a while with this, but they had no idea if it would be 12 months or 10 years so pretty hard to deal with but better than the first diagnosis…..
So all that happened over a couple of weeks, still feels like a bad dream. So that’s September 2012.
A friend commented that this is like watching a telethon, for those who remember the 80’s telethons “thank you very much for your kind donation, thank you very much, thank you thank you very much…”, trust me that’s better than my singing. But seriously thank you all, words don’t seem right to sincerely show how much this is appreciated… THANK-YOU. Andrei
Wow... I did not know about this, I guess because I probably would have said no, but thank you Sis. This is very strange, but you are all amazing and we are very grateful.
We have had a pretty average year not surprisingly, the Pharmac decision was a real kick-in-the-guts, you think you do everything right, pay taxes, contribute to society, have private insurances etc, but when you need help, then nothing, I get that they cant pay for everything, but its still frustrating when NZ cant offer any alternatives, problem is that I am not the only one dealing with this, crazy.
But despite all this, what’s happened the last few days since this started, the phone calls, the comments, emails and the generosity from you all really helps remind you that despite all the rubbish, all the negativity we are bombarded with daily, the madness that is this modern world, there are still some really genuine, sincere and great people out there.
Thank you all sincerely, this is all very humbling.
Andrei and the other AA's.
PS: We are in the process of getting a special account set up, trust/dual signatories type thing, as this is already bigger than expected we need to keep this all legit and clean from all sides.