The rollercoaster is almost at the end

So I have been putting off updating you all, hoping for some solid news. But every week just passes in a blur. Well you ask, what do you mean but solid news? GBM (Glioblastoma multiforme brain tumor) is not like other cancer when it comes to end-of-life. GBM has Nathan’s symptoms feel like a wave seeming to rise up and fall down. This is also due to him having young and strong, lungs and heart so I feel like this is his body is holding on. He hasn’t had a catastrophic health event to end this all quickly. I have been told that his trip could be described as a “long death”. Geez this GBM brain cancer just keeps on giving right till the end. I wondered how I could describe this and for Nathan he will look like he is transitioning to his last phase and then the next day pop up talking and eating etc. for short periods. So each time I think I will update you all to say he is finally in the final mile then he wakes up and surprises us all. In the last month he has been declining considerably each week.

I thought you might want to know what a typical day in hospice looks like for Nathan. We get the wake-up call sometime around 7am – 7.30am when the change of shift comes in and checks his syringe driver. The syringe driver allows his medicines to be continuously administered. Then I pack up my bed, open the blinds, turn on the breakfast TV show and get the bed for Nathan in the sitting up position. Breakfast comes around 8am, along with his morning medications. Breakfast is the highlight of Nathan’s day. He reflected the other day that he started out with weetbix and will go out eating weetbix! As he can no longer have cut-up fresh fruit on top the kitchen team is blending fruit for him. So I mix the blended fruit in with the weetbix. He said I don’t know why I haven’t tried this before, it is the best! I think that is his sweet tooth coming through! Then we sling him into the bathroom for a sh*t and shower (his words)! We pop some country music on and wait for lunch to arrive between 11.30-12noon. Sometimes Nathan gets a nap in before lunch. Doctors then do their rounds either late morning or early afternoon. Family will often come in the afternoon and I will run home for a shower. The volunteers do a wine trolley about 4.30pm and offer a glass of wine for whoever is visiting at the time. Until recently Nathan would partake in a glass of wine or I would make him a bourbon and coke. We turn on the TV to watch the 5pm Millionaire Hot Seat with Eddie McGuire. Nathan has always been exceptional with trivia! Then dinner comes around 5.30pm. Then the news shows till 7.30pm. We get ready for bed, teeth, make my bed on the couch and put on some relaxing music. His latest favourites are “Mercedes Bahleda” and “meditation self” on spotify. Rinse and repeat.

It is sometimes the small things that feel so good. Well like any boy, Nathan is in his element because at this stage everyone is happy when he pronounces “I did a poo” or “I did a wee”. And mind you due to his increased confusion this can be anyone who walks through the door! He says it’s like when the boys were little. I totally understand their struggles or successes firsthand! He is still the engineer pulling apart the process and working out all the parts of it. He says how do girls wee? I am like I don’t know, it just happens. He wants to know if it is different, and is there a step in the process his brain has missed. He keeps trying to train the brain to do what he wants. This is the undignified part of the journey and he is going out fighting and on his terms!

As we have traveled through January we have had long periods of days where Nathan would sleep all day. So this trend has gone from one or two days a week to now being most days, with the occasional day where he is awake for a few hours. This has made it difficult to have visitors. Sorry to everyone who has wanted to visit but the time hasn’t been available to come in. I continue to read him your messages each day. During this time Nathan expressed that he didn’t want to have people be with him or in his words “watch him sleep”.

It remains up-beat in his room and whenever he wakes he has family and staff in stitches. Only yesterday William visited on his way from Newcastle to East Sale on his way to his Officer Training Course which starts on Monday. William decided to go old school and get a marine haircut. Nathan was so proud, he has always encouraged the boys to have short hair. Well as you can imagine the ribbing was coming thick and fast from Nathan and his brother Zachary! On a more somber note, how do you tell your child that he will need to say goodbye to his father! Well really he has had to say goodbye multiple times in the last month. Training is 4 months….. so this goodbye is without a doubt. So bloody hard!

On that note now is the time to say your goodbyes, Nathan looks like he transitioning to his final mile (well we hope and pray). Nathan has often reflected during this time that he has been lucky to have so many rich and fulsome discussions with his friends and family. He said it is sort of like going to his own funeral where so many have shared the value of their friendships with him. With this in mind, Nathan would say, hug your fam! Ring your loved ones and let them know! Ring or message an old friend or new friend when you remember how they helped or you had a great time together. We never know what someone is going through and sometimes that friendly message or call makes all the difference to someone’s day! We definitely appreciate all your messages and calls!