It's been a long time since I have posted, and oh my gosh, a lot has happened. I don't even know where to start, so.....
Im starting from the worst day of the last few years one of the worst of my life,
New Years Day 2013.
Kent, my beautiful husband had spent christmas week, waking up with a swollen head and neck, shocked, I asked him repeatedly if he could breathe properly and if it was painful etc, we had no answers and as the day went on the swelling went down. As it was over the christmas period and he didn't appear to have any other symptoms, we put off seeing the doctor, however on new years day I was concerned as it wasn't getting any better, I sent him off to the Doctor. He came home with and appointment for a CT scan the next day, I knew that wasn't a good sign and I couldn't sleep all night thinking the worst, my fears were confirmed when the next day he didn't even make it home from the scan before the GP called him and told him to go straight to the Emergency Department. I called my parents to come and watch the children so I could take him to see what was going on, there was talk of a mass.... He was rushed through the emergency department and taken to a procedure room where they put in a drip and talked of reducing the pressure of the mass... it was a little while before we were really told what was happening. with very little information we were then told to go home, pack a bag and go straight to the Launceston Hospital, a bigger one than our local abut 2 hours away. Still shaking when we went home to pack, Kent;s family had arrived along with mine and we told them all we knew. Kent had a mass that was around his Superior Vena Cava and it had reduced the flow of blood that was returning back to his heart to less than a pin hole. we were headed to Launceston for Emergency Radiation Treatment to hopefully reduce the tumour so that the blood could flow better. and they could do further tests to know more about the dreaded mass.
My nursing Degree kicked in, I acted on impulse, I felt numb, but I had to stay strong for my man, I knew It wasn't good, I knew we were in for much more bad news but I tried my hardest to stay positive. I bargained with my life, thinking up different offerings I could give to change the results that were coming our way. But nothing could prepare us foe what was to come.
Arriving in Launceston late at night we were given more information, Kent has what is called SVC syndrome, (Superior Vena Cava Syndrome) it was what was causing the swelling when he was waking up in the morning, It was a large tumour that was wrapped around his SVC and leeching into his heart muscle, it was restricting the blood flow and so the blood was pooling in his head and neck and lymphatic system while he was sleeping. The Tumour is Lung Cancer! Stage 3A Adenocarcinoma to be exact. and Just like that, our world came crashing down. shattering into splintered shards all too sharp to place pack together. People don't recover from this, there is no operative procedure they can do, the position it was in meant that there was no option for surgical removal. They needed to treat it with radiation immediately to reduce the size so blood flow could return to his heart. With no time to digest this information Kent was tattooed and measured up for radiation. His regime started immediately and so did chemotherapy. Those shards of our life were slippery to put back together, But I some how we managed through those first few days, stumbling over words, neither of us really knew what to say to each other, we didn't know what to say to family, and we didn't know what to say to ourselves. All I could think of was what if I have to live this life without my one true love, my heart was breaking and It felt like hell. I wasn't sleeping, running though all the things we had yet to do, I wanted to grow old with this man, I wanted long walks along the beach I wanted hand in hand squished on a comfy sofa with a quilt over our knees, watching our grandchildren, great grandchildren play happily in the sun as it streamed through the windows.
I wanted working holidays in Sudan where I was nursing children and Kent was helping build houses. We had Dreams. We had so many more dreams, and so many that we hadn't even thought of yet. In a matter of a few words it all came crashing down, your cancer is Terminal!
The world stopped spinning.
Everything happened in very slow motion, days rolled by and I don't remember how, but we fought through, one horrid day at a time, Radiation, chemotherapy, PET scans, CT scans .. a whole new vocabulary that we had to learn, a whole new life. we just went on, I don't know how, we just did what needed to be done, then at one Oncologist appointment we had decided that we needed to know more, we needed to make some sort of plans, so we needed to know exactly what we were dealing with, the time of living in blissfully unawareness was to come to an end. we asked the question, How long?
the doctor initially said, You don't want to know!
I knew that wasn't good, my stomach lurched, I wanted to vomit, I could feel the saliva forming in my mouth, Swallowing it down, I said “yes we do, we really need to make some plans.”
The doctor said, “ its not good, it could range from a few months, to 10 years, but if you want a more specific answer Id say most people at your stage would have maybe 2 years!
I cant explain how I felt at that moment, it was a mixture of relief and horror at the same time. I guess I was expecting it to be more like a few months, so I was relieved that it was likely to be much longer but in that same minute, with those words the doctor took away all of our dream. how could we pack a lifetime of memories into just 2 years? words couldn't explain how I felt, and I can not imagine how Kent felt, never could I imagine It was hard enough for me knowing that this horrid disease would take my husband from me, but for him, finding out your life has an expiry date on it that is much shorter than you ever dreamed. I don't know how he did it, but he held my hand and said, its ok well be ok, Iv never seen a stronger man, than in that moment, he was worried for me. he was consoling me, yet he was the one that had received the death sentence, How could he be thinking of me at this time? but he did, he held me so close and confirmed… well be ok.
That trip home was the longest 2 hours, time seemed to just float by as we tried to make senesce of what we had heard. we talked about how we would tell our families and what we would tell the kids. Oh my gosh the kids were a whole other kettle of boiling water.
Fortunately they had been at their fathers house for the christmas holidays and had missed out on this whole saga. They knew nothing, a small blessing, it made it easier for us to get a handle on our own feelings before we had to deal with theirs. but it was to come. something else we had to think about. But for now it was just us, Kent Toby and me. Toby was along for the ride, he knew something was up, but didn't quite know what.
Things got interesting at one stage, Kent was in Launceston for radiation and I was stuck in Burnie with Toby in Hospital, he was dehydrated and had a nasty chest infection, he needed IV antibiotics. Toby was refusing to eat and had a nasal gastric tube inserted so that we could give him much needed nourishment. he was a very ill little boy, so we had not only lents cancer journey to deal with but Toby’s being unwell to add to the mix.
Then, with another stroke of bad luck we were hospitalised just a few beds away from my Ex husbands step daughter. In another cruel shard to add to our shattered family, my children's step sister had been diagnosed with cervical cancer and was in the final stages of her illness. She was just 17 and was very seriously Ill. I wont go into that too much as I know very little about that situation, just that it was affecting my children and they were living that horrible situation with their father as they were with him and his family for the school holidays.
Anyway, she was hospitalised just beds away from us, and I was doing my best to keep away from that situation, we were dealing with our own horror story and didn't need to add any more trauma. Things have never been great with my ex since we split up, and he got remarried, with nasty court battles over custardy of my three eldest children we were at a stage where we were not talking, not even the slights text message to find out what time to pick up children was passes without nastiness. So. it was a very uncomfortable time for me. I didn't want to add to the nightmare that they must have been facing knowing that their daughter was in the final stages of her illness. so I hid ourselves, just me and Toby, in our single room, with the door firmly closed, hoping that they didn't know that we were in there, I was too scared to even go out for coffee, as I didn't want to bump into anyone from that side of the family. of course it wasn't long before they knew that we were in the bed just down from their daughter, and things got even more uncomfortable, as their family members would linger around just outside of Tobys door, I was hoping that they would just keep to themselves, but unfortunately, they seemed to make a point of being around and hovered in the hall when doctors were seeing Toby. I was very frustrated as I made a huge point of staying out of their way, I locked us in a tiny room for almost a week, so that the family could grieve and do what they needed to do without my presence, I knew they didn't need any bad, awkward, uncomfortably situations with me thrown into the mix of the horror that they were going through. and I didn't want my three eldest children to know anything about what had been going on with us, Kent’s illness and Tobys illness until we had a chance to talk to them properly about it. we wanted to be able to sit down and fully discuss it so they knew what was happening. I remember locking us in the room and knowing my children were just outside our door, they were walking backward and forward as few times as they went to get ice-cream from the canteen, blissfully unaware that Toby and I were in the closed door right next to them. I didn't want them to feel uncomfortable and awkward, as if they knew we were in the room they would feel torn between who they should be visiting, and wouldn't want to make their dad angry by spending time with Toby and I, and I didn't want them to know about Kent until I could hold them, and tell them that it would be ok, we would get through it together whatever was to come, together we would be ok. so we hid, It was heart braking knowing they were just behind the door and after all we were going thought all I wanted to do was hug them, hug them and never let go. but we hid. we hid for them, so they weren't torn apart, they weren't uncomfortable, so that they could say their good-byes to their step sister without knowing the truth about Kent, they needed the time to say good bye, they didn't need anymore hurt or confusion so we hid, in out tiny room, and my heart beaked for them. I knew they wold be going thought hell, I knew they would be having the hardest time of their lives and I couldn't be there for them as, I had even more horrid news for their tiny hearts to hold, I wanted them to have time, before they heard it from me, I wanted them to digest and grieve for their step sister the way that they needed to without adding any more hurt. so we hid.
It was so very hard for me, I was away from Kent as he was fighting his battle, I was helping Toby fight another battle, with his illness and his eating issues, I was trying so hard to hold it together, for us all. I was standing strong, as strong as I could, to keep it all together, but my heart was breaking and all I wanted to do was open that door and hold my babies and cry and cry a river of tears, I wanted so badly to smell them, to touch them and to be together as a family. but no I couldn't do it to them.
I needed to let them be, to be with their other family to grieve and be family for whatever time they had left.
I have never felt so alone. locked in that room. knowing that there was only a wall between me and my whole world, and Kent was still so far away, we were apart. so broken apart.
The time that the oldest three where with their father was actually a blessing, looking back, as heartbreaking as it was. it allowed for Kent and I to grieve together, to try to understand what was going on in our lives, to try to piece back together some of those shards of what use to be our lives. things were going to be so very different.
Somehow in the blizzard that was those few weeks we decided to sell our house, and to move in to my parents house, they have a large house and there was enough room for us to take over upstairs and still live a relatively separate life, for us to have our own space, yet to have the support of my family right there. We needed help, with so may appointments and so much going on in our minds, we needed someone to take over the hard stuff, the meaningless stuff, the financial side of things so that we could be together, family, to piece together our lives again, and when my father offered this up as an alternative, we jumped at it. Heavily in debt with car loans and a home loan we were only just making things meet with two incomes, and with Kent never going to be able to work again we really needed to reassess our lifestyle, Ill be forever in debt to my parents, they jumped in and never thought twice about helping us, dad took over the hard stuff so I could concentrate on my Hubby, my Baby, My children, The Real things, the important things. He allowed me the time I needed to get myself together. we organised our move and with the help of our friends we packed up our house, our lives into boxes and said goodbye to the house that had so many of our great memories.
We had so much help those few weeks, from family, from friends and from the community. The real-estate even pitched in and sold our house without charge. Allowing us to get on top a bit. to keep our heads just drifting above the water. When I think back I will never forget just how much help we got. Friends became family and family rolled up their sleeves without thinking, without them all, we would have drowned.
However at the same time, friends, close friends drifted away, I think they didn't know what to say, so they chose to not say anything, some vey close friends, or who I thought were very close friends, pulled back out of our lives, thinking I guess it was all too hard. I still grieve for those friendships but I guess that hard times really do show you who your true friends are, and although I can kind of understand why they found it all too hard, I just wanted a friend, never anything more, I never expected anything miraculous, I never wanted a councillor out of them, just a coffee and a hug. To this day I am still disappointed in the loss of those friends. I loved them, I still do and I cant understand why it was too hard. how hard can it be to hug a friend, to say “It will all be ok”, even if it won’t. you just say what you need to say to get thought the day. It will be ok. We will be ok and sadly we will be ok without those friends. I just wish they still wanted to be part of our lives, I miss them.
Wow, how much has that blown your mind? and there is still so much more to add, still more sadness, much more happiness and many twists and turns to add to get you all up to date. and I am sure, many more to come as we head down this waterside of life, we cant stop, its too slippery, we just have to follow that path that is destined for us, we have to get wet, we have to scream for help, and we have to trust that there will be a nice pool of water, safety, at the end that we can splash into and be OK. we will be Ok, we just need to remember to love and laugh along the way.