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Jason's Bucket List! We need your help!

  • The Last Post (well nearly)      30 July 2017
    Posted by: Jodi Wareing

    I guess this is the post that no one wants to see or hear or read.

    Jason passed away on 21st of July at 6.07pm while I held his hand, his mother was beside him and as he drew his last breath ALL our friends and family that were in the hospice were in the room.

    He had decided on the Wednesday morning that he would like to go to hospice. He was having trouble breathing the night before, having a really bad strider, which is the sound someone makes when they are struggling to draw breath. We headed into the hospice and that night I came home as I had spent the entire week not really sleeping that well and his mum stayed in the room with him. The Thursday night I stayed with my Mum in the room, and he was struggling to breath most of the night, hadn't eaten in days and was having trouble swallowing water. I knew in the morning on the Friday that today was the day, and I guess in my mind I had made some peace with that because he had no quality of life. He was sleeping, struggling to breathe and drink, wasn't eating and hardly living at all. We had most of our friends come through the hospice on the Friday, which I was so glad about as there was a few that hadn't seen him in a while, and to be able to say goodbye, even though he was not conscious for most of the day, but being able to say goodbye was so important to me. I didn't want anyone to feel like that had missed their chance to come in and see him. The last time I spoke to him was when the nurse put a bed into his room beside his bed for me, and then I got to have a little bit of time with him without anyone else around. As soon as the nurse shut the door, and I was getting quite upset beside him, he woke up! He shouldn't have been able to wake up as he had a lot of drugs on board to keep him sedated and not distressed. But he did, and asked me to take him to the toilet. So I helped him up and into the bathroom, and just before I put him back to bed I hugged him and said you know I love you aye, he said yup, and I said right well we'll have a snuggle before you go to sleep, which we didn't get to do as he was so uncomfortable in any other position but his side, but I settled for holding his hand and we fell asleep beside each other for 45 minutes or so.

    Once I had woken up I went out to the lounge to try and eat something as I hadn't eaten much more then a bite of toast that day. His friends surrounded him in his room, my friends and family surrounded me in the lounge, and his family and my family surrounded each other in the whanau room. It wasn't until that point that he started let go, and we all got together in his room to be around him as he left his body. I can't help but feel that he was waiting for us all to be in the right place at the right time before letting go. He had most of his good friends around him and there was so much love in that room. I will never forget it as long as I live.

    Straight after he passed I had asked my mum to open up a door so that if he did need to vacate the room he could, and as she opened the door the next door neighbours cat jumped in the room, and I picked him up and gave him a cuddle, then the cat went and nuzzled Jason and then sat down between us. I couldn't help but feel like that was a sign from Jason that everything was going to be ok, and to not be sad as he had moved on from his body that was so worn down and sick.

    I am not afraid of death now. I look at how peaceful he looked, and how dying was effortless. It was nothing more then a blade of grass being flung into the wind. One moment he was there and then he was not. What a blessing that we were able to be together as a unit, whanau and friends, to farewell Jason. He deserved all the love and emotion that was poured out into that room.

    His funeral service was held this Thursday and we had roughly 500 people in attendance. I couldn't talk and see each and every person there, but to all the people that did come I would like to thank you. There were many kind words and support given from you all over the last 8 months, and I will never forget the power of people and positivity. I sang Autumn Leaves by Eva Cassidy for him, as I sang it for him at our wedding, and I managed to get through my tribute speech to him without just sitting there for 10 minutes and crying. His mother and father had some beautiful and funny stories about Jason and my mum had a beautiful speech written for him. They all spoke so well. There were more laughs then tears and I think that is exactly how my man would have wanted it. I made a slideshow which I will try and upload a link to on here later on once I pick the USB up from his mums house tonight. Then one of his best friends Fraser got up and spoke about Jason and his friends, and the different times they had had together, then his business partner Corey got up and spoke about a few different times that they had brewed and been to festivals, and lastly his co host and old friend James got up and spoke about Music, and all the good times that Jason had with him in their hip hop trio The Anti-heroes and their radio show Cold Cuts. A few more friends got up and spoke after that and then he was taken out to be sent to the crematorium. I will hopefully get Jason's ashes back this week coming so I can take him with me to the west coast. I want to go home for a bit and spend some time with my Popa and family, take some walks in my favourite happy place, Hoki Beach, and take my guitar and book and just write. I have found this page to be a haven for my emotions. To write honestly and openly without editing is a liberating feeling. I don't hold anything back when I write, which is exactly what I do when I sing. I sing from the heart and I write from my soul. I want to continue to write and to write music. I feel like I have been given this second chance at life to do the things that I want to do. I love my job and want to stay in that profession, and my passion is music, so that is something I want to focus on over these coming months. I'm not saying that any of this is going to be easy, and I still cry myself to sleep and wake up with tears in my eyes every morning, but as my boss Lois has always said to me, “Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.” I will keep trying again and again to find some normality and to find myself each day until I can hold my own.

    I am not making any decisions on Fiasco Brewing Company as its too early for me to start making important decisions. I want to spend the next few days feeling sad and wallow a bit at home, then I want to go to the coast and let my guard down for a while, get away from everything and just be ME for a few days, then I will come home and start to do all the adult stuff that comes with someone dying, such as sorting out all his personal finances and then figuring out how to do all the things Corey and I want to do with Fiasco and go from there. I also want to go away for a week or so and just have some fun for me. I have been a carer, a nurse, a pharmacy runner, a driver, a worrier and a warrior for so long that I have forgotten who it is to be me. I have never lived in my own house with my own room before. I haven't been "just me" for ten years, its always been Jodi and Jas, we, our and us. I feel like it's going to take me a while to find who I am now, what I believe in and what matters to just me and only me.

    So for the moment I will leave the page running and any funds that are received will go towards Jason's funeral and finances. I will be doing some of his bucket list, such as doing a glider flight, (which I am terrified about because I don't like heights, but I am willing to conquer this fear because Jason was able to conquer his fear of dying, I will do the same with heights) and I also want to spend some time up north re visiting some of the special places we went on our honeymoon and have some time with family and friends up north. I would also like to go to Brisbane and spend some time with my nephews and family there for a little bit, just so that when I go back to work, I have sorted out all the adult stuff, but have also injected a little bit of life back into my sore and broken heart, and blow a few cobwebs out along the way. I will leave you with my tribute speech to Jason and will update this again before I go back to work for a final post, to let you know where I end up taking him, and to let you know if I can conquer my fears as Jason did.

    I have so much love and respect for you all. Thank you. Thank you. Thank you.

    Jasons Tribute Speech from Me.

    Thank you all for coming. Thank you to all our friends who have travelled to be here, The support we have received from the brewing community and our friends and family have been outstanding and they all knew how special he was. I thank you all for being there for us. A special thank you to his friends James, Fraser and Corey. Your support has been irreplaceable. Throwing Jasefest and constantly being a pillar of strength for us both has made a world of difference. We are so blessed to have you in our lives. You made sure he never felt alone I thank you from the bottom of my heart for that.

    Our house was always open to DJs and Brewers. There was always someone dropping in for something, or someone would ask Jas if they could show them some tricks on the decks, or how to brew. We have met so many beautiful people over the years, both young and old, both south island and north. Our door was and will always be open. Jas pushed himself to achieve his dreams, his music and did so every week when he jumped on the radio, or when we worked at the many beer festivals Fiasco was featured in. He loved the fact that he was doing something he was so passionate about. Music and Brewing was his thing. It was touch and go with the Mr2 and myself who was in the first place sometimes, but the cars and bikes we're just a hobby. It was his passion for brewing and music that kept him creative and gave him a zest for life. I remember the day he came home after a night out with Corey and he was like babe, I think I'm going to start a brewery with Corey... I was like, ok, this is cool, lets do it!

    I wanted to be the one to enable him to achieve his dreams, to stand by and support him in every way as he did for me. I never liked craft beer back in the day and it took a few years and many brews before I could hold my own with all the brewers that seemed to be constantly in and out of the house, or at festivals. He was determined that Fiasco be a success and it was. I cannot summarise our life, his achievements or our memories, but I have never had trouble talking from the heart about Jason. He was such an integral piece of my being. He was the first person that came to mind when I wanted to share some gossip, a story, tears or a laugh. He was the first of most things for me. How strong minded he was about staying positive, how determined he was to get into remission, how hard he tried to keep me distracted when I was so upset about the cards that life had dealt us. To him it was all about what we had now, not over what we're going to lose. He showed me that it was ok to still live and make the most of each moment. He showed me the power of positivity. It is a lesson I will never forget.

    Mindfulness enabled us to deal with the never ending anxiety we felt whenever another Dr gave us bad news and god knows we dealt with some big blows other the last few months. Because we were together it seemed like we could handle it. Nothing was too hard or unachievable. His tenacity to survive, and his sheer determination in all things was infectious. Not that it stopped me completely from feeling doom and gloom some days, but when all seemed lost he would say "hey be mindful" and it would work. Mindfulness is about living in the moment, learning to accept and make the most of what you have, here and now. Even now I get upset and his wee voice in the back of my mind says, HEY be mindful. His determination to be positive and to hold good thoughts has finally rubbed off on me.

    He taught me to give without wanting to receive and it is one of the truest and most deserving lessons that can be learnt in life. He deserved everything I had to give and more. How and why should I be so lucky to have found the love of my life so early on I will never know. Ten years went by so fast.

    So much of him is still in my life. He surrounds me every day, both in my thoughts and in our home. I will never forget the way he would look into my eyes, his little giggle or the small smile he reserved only for me. Even though I lost my soul mate, the knowledge and wisdom I gained through his love and acceptance of myself can never be replaced nor forgotten. We loved each other as only soul mates could and even though this last year has been the hardest of my life I would do it all again for him because he was mine.

    You will live forever in my heart Jas, forever in my soul and forever in my mind, because you are apart of who I am. Thank you for letting me be me, and for teaching me to persevere, to hold faith and be positive. I cherish the times we were given and I shall always think of the good times we had. Goodbye is not an option for me because I don't think I will ever be ready. So please give our kittys all my love and one day, maybe not soon, but one day we will be in each others arms again, so until then.

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  • And so the next chapter begins.     20 July 2017
    Posted by: Jodi Wareing

    Last Saturday we ended up in ED at Christchurch Hospital as Jas woke up and said that he couldn't breathe properly. We had a chest xray and it looks as if there is a tumour surrounding his superior veina cava, which is the main artery that pumps blood from his head to his heart. They had also told us that there was nothing that could be done for that other then radiation and that is a route we have already been down and do not wish to re enter at all. It didn't work for him the first time round so why would it work now. We were told to take him home and to start seeing him decline. So we headed out and bought a king single bed and moved our super king bed out to the shed to make room for a hospital bed to be delivered so at least Jason would be able to be comfortable in a bed at home, and I would still get to sleep in the room beside him. The tumours have blocked his lymphatic system in his neck which helps move the fluid around from his face and neck back down to this chest. We got in touch with a lympadema specialist who helped show us some massage techniques to move the fluid away from the blockages in his neck and into the left side of his neck and body to process some of the fluid out. It's definately helped and seems to make the swelling come down.

    As each day goes by Jason gets a little bit sicker. He is sleeping more and has a syringe driver 24/7 filled with medication to keep him sleepy and to keep the pain away. Yesterday he decided that he wanted to come in to the hospice. He cannot swallow much and hasn't eaten for a few days. He is starting to lose weight and the tumours are stealing him from me. He is not asleep 100% of the time, he wakes up every so often to talk, sometimes he may wake up when a person comes in to say hello, other times he will just look up and see me, spin a little yarn with a smile then fall back asleep. He is not in pain, but his body is starting to give up on him.

    I guess i'm not sure what to say about how I feel. People keep telling me how strong I am but I certainly don't feel it. I am just trying to get through each hour. I haven't updated this page as I don't want to inundate Jason's cellphone and facebook with messages with people saying be strong and we love you bro because he's not ready to give up. He is fighting 100% and will continue to fight until the end. Those sorts of posts and messages and texts are not helpful to him specifically because they spell out the end for him, it is something that he has not come to terms with. No-one thinks at 33 years old that they are going to become so sick that they are going to die. He does not need to see those sorts of comments, and he also has trouble crying as it causes him to choke. The tumours in his neck eventually going to cover up his throat completely. We are prepared for the worst to happen and I guess that I feel more comfortable at the hospice because in this place I am only me. Just Jodi. Not Jodi the caregiver, Jodi the person giving him injections, Jodi the one who is running to and from the pharmacy each day or calling nurses in to annoy him and give him more things to worry about. I get to be the wife, just Jodi, the person I am when I am not all those other things. There are nurses there to adminster his drugs and to check up on him. I am writing this from the family lounge atrium in the Nurse Maude Hospice and he is only a few metres from me asleep in his bed with a lot of pain medication on board, and even though I feel like my world is falling apart and my future is being taken from me slowly, bit by bit, I know that he is over feeling the way that he feels. He struggles to swallow the smallest amount of water, and I know that sleeping is his only relief. In saying that, he does not want to die, but he also is not dealing with the reality that has been dealt to him by this terrible disease.

    So here we will stay, until he either decides that he would rather go home or that the pain he is being dealt in this world is too much to bear. I think it's important to note in all of this that even though he doesn't want to see us upset, and he doesn't want to deal with other people saying goodbye to him, it's important to all of our family and friends that they take some time to be upset, take some time to feel absolutely shattered and to have a big cry. I know that when I am away from him I let my emotions run wild, I cry at the drop of a hat, the smallest things can make me feel completely lost, but I let myself experience them all because to suppress those types of emotions and not experience them would be worse. Of course I am going to cry for my husband, my best friend. Of course I am going to get angry, be sad, be upset and rage. It would be a waste if I didn't do those things while he is still here, because when I see him I am reminded that for the time being he is peaceful, that the last ten years of our lives have been a blast, and I have been blessed to know true love. Í cannot think of the person I would be if I hadn't met him. He has influenced my life in such a way that for me to think about who I would be without him would be impossible. I am not ready to lose him. I am not ready to live a life where he does not fit into the equation. So I am counting my blessings while he is still here, and making each minute of each day count with him, and be reminded that although one day in the future he will not be beside me, he is always going to be in my memories and in my heart. He is apart of who I am.

    So for the time being I will leave it here. The hospice is filled with many other people in the same situation as me, losing the ones that they love. We are all in the same boat, sailling on the turbulent sea of emotion and clinging to each other for support. Please get in touch with me if you think its important to come into the hospice, but be aware that his room is very small, he is not awake much and cannot talk very well at all. Sometimes its a case of just sitting in the lounge here with our family or friends and feel like being here is enough. Please also respect that when people do come in, he gets exhausted very quickly, so visits need to be keep to 5 minutes, and he may not even be awake for the time that you are here. Also remember the above message about sending your "goodbyes". If you just want to send me an email to read to him, or even just to me, you can email me on jodiwareing@hotmail.co.nz

    We feel all the support and love from you all and cannot thank you all enough. I will update when I can and will be checking his facebook to ensure that I can tell him any messages of support that come through.

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  • Together.     4 July 2017
    Posted by: Jodi Wareing

    It's been a while since I have posted because I guess its been so hard to talk about what it going on. I hate to hurt people with our situation, but it is life. There are many, many other worse off people in this world going through the imaginable, without support and guidance, so we need to be thankful for the time we been given. Some of the advice from people that has stuck out is this:

    "Here’s what I want you to know: Do what you need to do, cry, scream into your pillow, punch your pillow, walk in the park and take time to just notice...Let people see you. Reach out, which is the last thing we feel like doing when we’re sinking"

    A sentence from a blog I was reading; "facing a terminal illness is like looking into the sun, you can bear to do it for too long."

    and the last; "I truly believe when we talk like that from our hearts that people are helped"

    Oh how true that last sentence is. It isn't until you speak what is on your mind that you can let people into your world, and even if for a moment, allow yourself to let your guard down for a second. It does help to speak from the heart and let people understand. Dealing with a terminal illness is a rollercoaster. There are some days where you don't want to deal with anything, so you stay in your pyjamas and sit on the couch feeling sorry for yourself and cry for all the things that may never come to pass. Other day you're up and about early, determined to make the most of today, and to have everlasting memories with the person you love. Its never easy. Some days Jason can sleep for 18 hours. Some days he can get out and go work at his brewery. There is no rhyme or rhythm to dealing with day to day life with a terminal illness.

    The tumours have come back in his neck, cheek and throat, and they are growing quickly. 3 weeks ago we spent the weekend in ED and they admitted him that night for observation. The tumours in his neck and cheek are affecting the motor skills of the right side of his mouth and tongue. They are also giving him neurological headaches and causing a him a slight speech impediment. They put him on some steroids and morphine and sent us home basically. That Wednesday we went in to haemotology outpatients to see his consultant, and we told her about all the things that have been going on, and she basically said that from this point onwards we are to deal with palliative care for the first point of call, and then her.

    His palliative care nurse has prescribed stronger morphine, some painkillers for the nerves in his face to give some relief for the pain, and stronger steroids to try bring down some of the swelling around the tumours. It has worked to a degree, as he is not having the migraines at present, but the morphine just makes him tired, and sleepy and a shell of himself. I know its such a small thing, not being able to talk properly because in the wider scheme of things at least he's still here to talk to me, but what I would give to take this pain away from him. He is still my soulmate, albeit a little swollen around the edges.

    They also confirmed with us that it's spread to his stomach and there is nodule activity in his lungs. None of the appointment was positive, and I didn't expect it to be in the first instance. But it still hurt nonetheless.

    We decided that we would leave CHCH on that Thursday night, and travel to the West Coast, as most of my family live in Hokitika. Later that night at 10.30pm I got a call from my flatmates saying that my lovely cat Percy had been hit by a car and couldn't walk, I told her to take him to the vet and inevitably he had to be put down. This has just swept the rug out from under my feet.

    I am angry, sad, upset, heartbroken. I don't know how to deal with all these feelings because I'm trying so hard to be strong for my husband, but I'm so gutted. I will never get to see his beautiful green eyes again, I'll never hear his sweet purr in the morning trying to wake me up for breakfast, and I'll never watch him skid around the house, carving up a storm like he used to. I really only just got over my last cat Robyn being gone, and now this diagnosis, and Percy is gone, I just feel like for the first time I am defeated. I'm raging inside and I don't know how to get it all out. My heart still aches. I can't feel the familiar weight on my feet, where Percy used to sleep all night, and then I remember that I will never feel that again because he is gone. I think this is parallel to my fears about losing my husband, so its bringing up all sorts of feelings and emotions.

    I don't know what to ask from people around me because I don't know what I need to make myself feel better. I don't think there is anything that will make me feel better right now. I need to remember how to breathe and to be brave, and I know whinging about it doesn't fix anything, but I can see a little more clearly after writing this and re-reading. I don't expect people to offer me anything but kind words and support, but my workmates have been cooking meals for us to take the pressure off at night, (and doing it off our strict ingredient list gets hard sometimes) and my boss has organised cover for me at work so I can spend time at home with Jason while he is not doing so good. He is on morphine 24/7 and very uncomfortable with this ever present tightness going on in his neck. So its provided me a lot of relief to be able to not worry about my job. If it comes down to earning money, or spending this time with Jason then it's obvious who I am going to pick. My mum in law told me there's no point in going to church and thinking of the farm when you can stay on the farm and think about church. She's right. I can't give my job the attention it needs to do it properly right now because I'm struggling to deal with everything else that's going on in my life.

    Jason is trying to remain positive about his treatments. We both have days where we are positive, and days where we aren't, and having each other is keeping us sane at the moment. We are doing some meditation classes too, trying to learn to deal with this big emotion and the constant daily reminder that he may not be around for too much longer. I am reminding who I can that they need to be getting in touch, not only because I think he'll be gone, but that we both need support from our friends, from our family, and even from the random people in support groups that we're apart of online.

    We are not sure if Jason is able to travel yet. We are still trying to get a pain management routine that actually works. So please know all your donations are still sitting there, waiting to be used for Jason and I. If we need to use some of it for his treatment, then there is that option too, but at the moment the only things he has gotten for himself so far have been a lions AB rugby shirt and a hat! I have no doubt that if we are able to travel in NZ that we will be off and away as soon as we can.

    For the moment, we are trying to keep each other company, get on top of his pain management and spend some of this time that we have together, TOGETHER. Please, if you want to send any words of encouragement please do put it on this page, we both need pick me ups. We both need to learn to reach out when we feel like we are sinking..

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  • And then it was gone.      2 May 2017
    Posted by: Jodi Wareing

    This week has been a rollercoaster of emotions and a lot of time waiting around experiencing the highs and lows of the public health system. Jason and I turned up at the hospital early on Monday for his surgery on his neck. He was getting the tumour and his tonsils removed so that they didn't grow larger and affect his functions. Once we had been seen the surgeon said that his removal would be tougher than they thought because the nodule on top of his other tumour under his skin (that we were led to believe was just scar tissue from cells being radiated) was in fact another lymphoma. This will be confirmed when we receive biopsy results from the hospital but the surgeon who came in the evening confirmed that it was similar in shape and form to the main lymphoma that they were removing.

    Jason's Mum Lynda and I went into recovery to meet Jas after he woke up. He was super groggy and still not quite with it, and I could certainly tell that he had the tumours removed. He does have a wicked scar starting from just behind his ear to the bottom of his neck under his chin. It rather does resemble a prop from Freddy Kruger at the moment because they have used staples to join his skin back together and he has a drain inserted to remove excess fluid while the neck recovers. He's had to have a bit of muscle cut out as it was really stuck in there. The tumour inside his neck had actually surrounded the main artery so we were really lucky that he had this surgery in time to stop it from causing some serious damage. In hindsight, that would have been why his surgery was pushed to the end of the day, as it was 3 hours he was in theatre and back into recovery for. They were able to save a few nerves that control his tongue and shoulder, but had to cut a nerve that goes to his right ear. So its all numb and feeling a bit strange. He's doing really well otherwise, he's eating and is staying on top of his pain relief, and we are hoping that they can remove the drain tomorrow and we can bring him home to recover.

    Tonight, after Jason's mum finished work (she works in the hospital, rather handy you know:) she came up to Jason's ward and invited me to go to a vitamin c and cancer treatment seminar held in the lecture theatres at the university in the hospital. It was really interesting. It did leave with me with more questions than answers, but that's exactly what we need to get the wheels turning in regards to alternative treatment for moving forward. Now that he's had these tumours removed, we can really focus on moving forward with a number of alternative therapies and regimes, intravenous vitamin C transfusions being one of the many things we are learning about. I really enjoyed listening to both of the lecturers tonight, one of them having over 25 years of experience in studying vitamin C. Did you know that one intravenous vitamin C infusion is the equivalent of someone eating 70 oranges? It was certainly an informative session and I look forward to meeting and talking to the array of people we are in touch with. It certainly feels good to know that we are moving forward.

    I'm knackered. I've had some hard moments this week, knowing that what we are fighting can grow so fast in so little time has hit hard. I am no longer under any illusion that what we are trying to eliminate is a speedy wee bugger and it can do some serious damage. It's time to focus all of our energy on getting to where Jason wants to be and enjoy ourselves along the way. We only get one chance to do what we do everyday. This is making me really think about the things that are important to me and that to live life to your own standard of fulfilment takes a lot of thinking and debating within yourself. Add some stress and worry and a little of your normal daily grind, it really takes the wind out of your sails. I'm having some me time this week to relax and I know that won't happen until I get Jas home. But never fear, I am making sure to look out for myself and have some time to de-stress. I'll take a bath tomorrow once Jas is home and listen to some Tash Sultana, I bought myself a ticket to go see her live near the end of the month here in CHCH, so it goes to show I'm still thinking of myself, and trying to negotiate some balance in all of this too. Here is a link to my favourite song of hers: https://www.youtube.com/watch?v=QFn2kyvkk7g

    Its late, time to sign off. But I will see some of you this weekend at Jasefest, which is an event being run by some of our closest friends, who are donating 100% of the proceeds towards us. We feel pretty humble and very special to have people in our beer and music community, and our circle of friends that want to do this for us. Search Jasefest on Facebook if you want further details. I look forward to seeing everyone :)

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  • Bad News is only Bad News     13 April 2017
    Posted by: Jodi Wareing

    We got the news today that Jason wouldn't be getting the stem cell transplant done.

    It seems as though the tumour in his neck hasn't shown any reduction from the radiation and the round of cyclophosamide that he's had over the last 7 weeks. He underwent a month of radiation and had a round of chemo to get his body ready for the harvest, and underwent that in the event that the transplant could have gone ahead it would have done so next week. This is not to be the case and we were prepared for that answer to be given to us, so we both were a little stronger this time round hearing it.

    This afternoon we were referred to the Ear, Neck and Throat department and seen by a specialist who has suggested we remove the tumour from his neck to stop it from interfering with some important parts in his neck, such as the main artery and nerves controlling your shoulder muscles. They will also remove his tonsils at the same time because there is a small nodule of cancer in his right tonsil that has just been chilling out for a few months doing nothing. It is likely that the cancer will come back and present in the neck again but that's just something that we will deal with down the road.

    We are of course looking into a great deal of other treatment options both clinical and holistic to see what direction we want to take in terms of treatment for Jason. We both have a lot of thinking, researching and debating to do with each other and really we just want to think about the amount of time he has left, and the effectiveness of each treatment. It's completely up to Jas to determine what he wants to do and at this stage we are looking into appointments with a broad spectrum of people. Jason's consultant also requested and sent information regarding a clinical trial held here in Chch but we are not sure that he's eligible for it just yet. We should find out in the next week or two.

    I think the most important thing for us at this time is to stay in a positive mind frame, and really dig deep to keep our thoughts, friends and whanau positive alongside us. There is much to be said for a positive outlook. Its your choice to feel what you feel and and we know that dealing with bad news is hard not only for us, but the people who are traveling alongside us in our journey. Tomorrow we are heading off to Wanaka for a bit, see if we can outrun Cyclone Cook (when has a little rain stopped a West Coaster?), and make a few stops on the way down. It will be good to get out of the house and just be somewhere different, do something new and enjoy each others company.

    There are so many people out there doing amazing things for us in the background. I want you all to know we appreciate every bit of help coming from all directions. Please know that you are giving us this one in a hundred chance to live and enjoy LIVING!

    Have a happy Easter weekend and make sure you did that supermarket dash tonight as they won't be open tomorrow!

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  • Stem cell harvest success!      30 March 2017
    Posted by: Jodi Wareing
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    Its been a rough couple of days. About 2 days ago Jason started to get a really sore throat. He started to feel the fatigue and burn from the radiation quite badly in his throat and it was causing him quite a bit of discomfort. He was having trouble swallowing, eating, taking his medicine, and is finding it hard to keep on top of the pain relief.

    So Wednesday morning we had some blood tests at haematology outpatient and managed to get his transplant coordinator to squeeze him in for an appointment so that we could get his throat checked and ask about more pain relief. We pretty much ended up telling them that we could not give him the pain relief that he needed to be comfortable, so they admitted him into the bone marrow transplant unit at Christchurch hospital at 9.

    Jason had three litres of fluids pumped into him. He was very dehydrated which was making a hard for them to be able to pull blood out for his tests. It's good that he is in his own room atm as he is pretty tired, and sometimes it is quite hard being sick and feeling like crap in the shared rooms. Not only are you dealing with hearing other patients deal with their treatment, but you are also dealing with their families dealing with the treatment. It sometimes gets on top of you. Also when you're most want quiet you'll never get it.

    Jason spent most of the day and hospital sleeping and taking quite a bit of morphine to get on top of his pain levels. Today, Thursday, he was able to have the stem cell harvest done. This is a machine that removes the blood from his entire body 3 times over 2 needles that are inserted into his arms.

    What the machine does is spins the stem cells out of Jason's blood and separates out the plasma and then the blood circulates back into his body. This does make him feel tired and the blood machine is pulling iron and calcium out of his body too, so he will be feeling really tired tonight and is admitted for another night at hospital so they can keep an eye on him.

    So as you can imagine both Jason and I are feeling very grateful that the harvest could go ahead and that we are another week closer to finding out exactly what is going on.

    Jason's parents have sold their home up north and are moving into our house today. It will be good to have some support while he is going through this recovery phase from the radiation and also the recovery from the harvest. We are feeling very blessed to be able to have them with us while we go through this journey.

    So I'm tired, I'm stressed, I'm over dealing with Christchurch hospital park and ride and all the other car parking issues that come along with being at hospital but we are getting there day by day, and continue to appreciate everything that everyone is doing for us.

    I better go back to the hospital room. Jason has 3 New Zealand Blood Service ladies with him that are looking after him and making sure that the stem cell harvest goes smoothly. I'm just a bystander keeping a smile on Jason's face and waiting for him to be unhooked so I can snuggle up for a cuddle. I leave you with a picture of Jas cracking a joke with the nurses. Of course Jason is still spinning a yarn!

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  • Radiation Done! Next up...Stem Cell Harvest..      24 March 2017
    Posted by: Jodi Wareing
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    We have now finished the radiation treatment. Jason had his last radiation treatment on Monday. On Tuesday we got up early and head into the hospital.

    He was given a huge whack of Cyclophosphamide Chemotherapy to start wiping out his body. The aim of the game now is for Jason to have regular blood tests and GCSF injections at home for the next week before the stem cell harvest on Tuesday.

    As you can imagine we are excited to get the next phase of treatment started, and ask for all your prayers and blessings leading up to the next CT scan which will tell us if this is a cancer that can be cured by the stem cell transplant, or if we are heading towards palliative treatment. Both of us are scared silly of course, but we are trying to keep positive each and every day and remind ourselves that we have some fantastic doctors on board, as well as family, friends and supporters.

    I'll leave you with a picture of Jas having a sleep in while having his chemotherapy treatment on Tuesday. The hospital is a boring place to be for day and most of the day was spent with Jas either sleeping, or attempting to eat something. He has a very swollen sore throat at the moment and has lost all taste in his taste buds. We are taking each day as it comes and appreciate all your kind words and encouragement. Bring on the stem cell harvest!

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  • Over Halfway Point for Radiation     14 March 2017
    Posted by: Jodi Wareing
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    We are over halfway through radiation!! This means that next week Jason will have a round of chemo on the last day of treatment, and they will carry out the stem cell harvest.

    I have been asked a few times exactly what that is. So to the best of my knowledge (with help from the amazing Jen who is the transplant coordinator) He will essentially sit in a chair or in bed with two needles hooked up to him, and they will circulate and take out all the blood in his body 3x and put it back in. In between the two they will have a spinner, that will spin the stem cells out of his body to be frozen until they are ready to put them back.

    The reason they take them from his blood and not another is so that his body can't reject those stem cells.

    We're still a while off the actual transplant, and in the meantime Jason is going well, but is starting to experience the side effects of radiation such as loss of taste buds, inflamed mouth and throat, and to top things off he's caught a cold! Hopefully this will be cleared up by next week. Below is a picture of Jason's home treatment machine where they administer the radiation, which I will update about next time!

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  • Feeling Overwhelmed      2 March 2017
    Posted by: Jodi Wareing
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    Firstly, I would like to acknowledge all the people that have donated so far. We feel so humble, appreciative,gob-smacked and those are just a few emotions that run through our minds when we think about how blessed we are to have amazing friends and whanau.

    It took Jason nearly a month before he decided to go through will letting the page go live. As you can imagine we have had some really tough days, some hard decisions have been made and to be honest, we didn't want to experience the barrage of messages, phone calls etc. that comes with letting everyone in on whats going on in our lives at the moment. You think of how horrible you felt reading the situation, and imagine re-living that every time you told someone whats going on. Its super hard. Its hard to see the people you love hurt. And especially because we are causing the hurt.

    I am glad that he did choose share the page though. Support comes in many ways, shape and form. We have talked to friends that we haven't spoken to in years, purely just because they want to be there for us. People who have only met us a few times, giving us support, letting us know they are there for us. It's amazing. Letting everyone know, as hard as it is reliving it every time we have to talk about it, makes it easier in the long run, because we are going to need help and support over the next couple of months/years to get through whatever this terrible cancer throws at us. So thank you for being here for us.

    We are both trying to stay positive, to keep our lives as normal as possible. To forget each day just for little while about whats going to happen, is what we need. We want to just LIVE. This is what the page is about. It's going to allow Jason and I to live and enjoy life while we experience all the horrible stuff in between.

    A lot of you are wanting to see a bucket list. Jason's getting there. We will upload his bucket list when he's ready. We are still getting through messages from our loved ones, and also still dealing with the shock of finding out that he is terminal. Its the silliest, smallest things that upset's me sometimes. Feeling like life has a pause button is the weirdest thing. But we will get to the list, and of course update everyone as we go along.

    To give you an idea of a few things he mentioned so far:

    - Head north to see our good friends The Williamsons in Tauranga;

    - Spend some time in Ngongotaha with Jason's Aunty;

    - Time with this other Aunty, Grandma and Uncle in Tokoroa;

    - Recreate our honeymoon in the coromandel;

    - Head south to spend time with his other Aunty in the Catlins, my sister in Queenstown and his brother in Dunedin;

    Jason's parents are moving to Christchurch to be closer with us. Apart from that, the entire ten years we've been together he hasn't had family in Christchurch. So he wants to spend some time with them and make some memories. We do not have a timeline to do these things because currently, the most important thing is having the radiation everyday, and then see how he is feeling. So please have patience with us :)

    So with that, I will leave you with a picture of Jas the day he shaved his dreads off. He's starting to get a mustache and eyebrows back already!

    Thank you x

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  • Bliss in the Wilderness     13 February 2017
    Posted by: Jodi Wareing
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    This weekend we headed to the West Coast for a few days. A good friend of ours was doing the Buller marathon half and booked a holiday home in Punakaiki to stay in. It was a small B&B called Koru Lodge.

    We got up early and headed to Westport to receive our friend over the finish line at 11.30am, and then had lunch at Carter's Beach with them afterwards to celebrate her success.

    When we got back to the lodge we went down to the beach and the boys went mussel hunting and I sat on the beach with my friend and realised the entire weekend I hadn't cried or gotten upset about our situation once. I aired out some of the things that I was over and once they were out it was like a weight off my shoulders had lifted.

    The difference between the person I was before I left, and the person I am today, is my attitude. And to be aware of the change that I've made, and how much help it is to my well being, that is priceless.

    Yes, sometimes you just have to lose it in order to keep yourself together in the long run, but really, being strong for Jason is what's going to help us both in the long run. We can continue to allow things to feel like they are spiraling out of control but when I feel the most strong, is when my attitude is in charge and the positivity and confidence that it generates is a much more powerful feeling than despair.

    There is a lot to be said for the majestic wilderness of the West Coast, I am glad to be able to call it home.

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  • 9/02/17 First PET Scan Results     9 February 2017
    Posted by: Jodi Wareing

    Today we had some good news. The lymphoma hasn't spread to the rest of Jason's body! Although they found a 8ml wide nodule in his right tonsil, the rest of his body is cancer free.

    So now the plan is to try the radiation and steroids, to get the swelling down in his lymph node. If oncology can give curative radio therapy and it clears it up, then we may get to do a stem cell transplant that could put him in remission. Again, they've stressed that its a low possibility. But we are taking anything we can get!!

    So into the hospital for a neck and head mould to be made for the fractions that he will be receiving (radiation sessions) and have another CT scan to pinpoint exactly where they are going to give the radiation. Also they will tattoo his neck with some small points to make sure they line up exactly in the same place each time.

    We are going away this weekend to the West Coast (where I am from) to watch a good friend and supporter of ours run the half Buller marathon. It will be good to get away before starting radiation and hopefully settling back into a routine for the next round of treatment.

    Today he had his first feed of sushi in 6 months after being told his neutrophil counts were high enough to take him off the low-immune diet he had been on since September! Next week we'll have steak...hmmmmm....can't wait!

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