Jason's Bucket List! We need your help!

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.