Monthly Archives: July 2018

‘Let it go’

intentional vacuum

The very first morning after Jacob had passed away I began to get rid of things that hurt to look at. Not his personal belongings but all of the medical things that reminded me of how sick he was and this was not the way I wanted to remember him. I thought I was doing ok until I saw his toothbrush sitting in the bathroom shelf. That was when I lost it. I threw it away as he had no need for it anymore but that little brush was his, he’d held it in his hands, kept his teeth clean, travelled with him to hospital yet it had begun to show it’s warn out age with the bristles looking worse for ware but it broke my heart to through it out. I threw it in the bin blinking back the tears in sobs.

People would tell me not to sort out his stuff just yet and wait till the time felt right. What is right? It was all totally wrong. I’d never been in this situation before as far as I knew I was just winging it. I got myself in a state when I couldn’t find a certain t-shirt and tracky-dacks he’d wear during treatment and I accompanied him to every hospital stay. He looked so handsome in his Nike Yankees black t-shirt that he bought on our last family holiday together – Hawaii. I never did find it and I think that we must have left it in a plastic bag for washing at one of his hospital stays, never to be seen again. I have to be thankful that I’ve got many photos of him wearing my favourite t-shirts.

One of his close friends took home Jacob’s pair of sunglasses to wear proudly as he thought of his mate and another friend took several pairs of his size 13 colourful converse high tops. Jacob’s straw hat is perched on his memorial shelf along with his eye patch (the treatment caused Jacob to have double vision) and wallet with his drivers licence still in its slot. Rachel’s partner Adam thankfully took some of Jacob’s clothes as they had similar style in clothes and size and I get a warm fuzzy feeling when I see him wearing them. I kept the clothes that made me smile when I held them close drawing them in for a hug and snuggle, I just wish his scent would stay over time. His other clothes I gave to charity to be sent overseas to an underprivileged village along with unopened medical supplies that couldn’t be given back to the hospital pharmacy. With this exchange of personal belongings it felt good for purging with good intent. In a suitcase in my bedroom I keep a handful of clothes of Jacob’s that I can’t get rid of. I just look over them from time to time when I empty them out on my bed to repack the suitcase for an upcoming holiday.

I have another old hard black plastic school bag in my cupboard. The ones you used to sit on like a horse in the bus line at school waiting for that lift home. In this school bag contains lots of my children drawings, cards and presents they’d made for me for all the celebrated events over the years. I guess I’m what you call a hoarder in these regards to these treasures. I even have the letters that my husband had written to me before we were married when I was living away for nursing.

The things I do relish in throwing out to turn a new leaf is clothes I never wear anymore from my cupboard. I look at garments on the hangers and say if I lost a few kilos I might wear that again – but I’ve been saying this particular statement for as long as I can remember so it’s really time they went in the charity bin. When it comes to throwing out and decluttering my children’s belonging that’s when I feel like Jessie singing her song in ‘Toy Story 2’ – when she loved me. Why does physically holding on to memories have to be so hard?

Clearing out physical space creates an intentional vacuum for fresh, new life. I would love to declutter my house and really decide as I held an object like a vase, or trinket box close to my heart as I asked myself the question in my head – does it bring joy? All of Jacob’s belongings bring joy 💕 ……and heartache.

Pronoia

pronoia

I was asked to write about having a bias towards pronoia. At first I had no idea what it meant and after reading the explanations given to me for this writing exercise and googling it on the net I began to understand the theory of it all. My life was certainly different before losing my ‘forever 20’ year old son Jacob and what I wouldn’t do to bring him back and change my new ‘normal.’ Life before this moment I was probably more familiar with the opposite of pronoia – paranoia, sweating the small stuff and thinking the world was out to get me. Even when Jacob was first diagnosed, at the beginning treatment, reaching remission, his many relapses and having been told that your life is coming to an end the thoughts in my head were more negative – how could this be happening to my young adult child, my beautiful brown eyed boy, my youngest child? What did I do to deserve this? Why did it have to happen to my family? Why wasn’t Jacob part of the positive percentage of statistics who survived Ewing’s Sarcoma after treatment? Yes I did have a lot to angry about. Having all the negative thoughts in your head all the time brings you down.

Something had to change. I could be bitter, angry and withdrawn pushing away the world, curling up in bed in a fetal position or with Jacob’s help from above I could be learning to ‘SMILE’ again – see miracles in life everyday. I chose the last one as Jacob wouldn’t want me to be sad all the time. We had a motto during the last month of his life after being told ‘there’s nothing more they could do to cure him of the disease’ – it was ‘live everyday of your life as if it’s your last and be thankful for everyday you’ve been blessed with.’ And it’s as if he telling me in a loud voice ‘do it mum, do it for me, live your life well’ as I get up out of bed everyday knowing he’s not physically here with us anymore.

I will continue to smile and see and feel him in the miracles I see everyday like the sunrise, sunset, rainbows, the beat I play on my African drum, the songs that randomly come on over the radio with messages from him in the lyrics, when I see a feather, a penny from Heaven at my feet, a butterfly and dragonfly, when I’m on the lake in my kayak, the first star I wish upon in the evening sky, the full moon that plays with my emotions so. The colours I see are so much brighter now, perhaps in my life before my grief I was too busy to really notice, but now I really stop to smell the roses, the see how beautiful life is and how quick it can all change. It’s all just like the song that Jacob introduced me to on the way home from having chemo. He said ‘mum you’ll like this song’ from the back seat of the car as he played it from his phone. I did love it and shared this with him as I cried behind dark sunglasses without him knowing. This was the song he took his last breath to, as he was surrounded by 19 family and friends – ‘it’s nice to be alive’ by Ball Park Music. Yes it is ‘nice to be alive’ and I’m thankful for all the signs that Jacob is still with us as we tread further down the road since we’ve kissed his forehead, held his hand and heard his voice. I’m using his camera now as his career choice was becoming a cinematographer so I’m seeing the world through his eyes the lens of his camera keeping us connected.

I will love and miss him for the rest of my life until we meet again but in the days that await I will not take things for granted like I did before his passing. I will have those days when the grief will come from nowhere with random triggers that cause burning tears, but I can’t stay with these days, grief will always be part of me but I can’t let the darkness dull the light that’s trying it’s best to shine. I will try and wake up each day with a grateful heart and be thankful for the things going well in my life. I am alive, I have a loving husband by my side, 3 beautiful earth bound children, a roof over my head, fresh water and food to eat, clothes to wear, a job with a regular income, family and a great circle of friends (in real life and the ones I’ve never met yet have connected with online).

With my writing task tonight I hope I have grasped the understanding of the word pronoia and how it looks in my life right now. Pronoia – noun, the belief that everything in the universe is conspiring to support you – my belief in pronoia armed me with a positive and optimistic outlook even during my most trying times….losing my son to Ewing’s sarcoma aged 20.

‘Oh to find a cure’

breakthrough

In my lifetime and not in the far too distance future I hope I will be living in a period where cancer is only known as a zodiac sign. Cancer would be part of our history in stories we were told about how it was in days long ago. Families won’t be torn apart by the loss of loved ones and we’d have a new generation of people who get to live to a ripe old age and pass away with dignity by saying goodnight to love ones then falling into a blissful lifelong sleep and slip away during the night. This futuristic breakthrough won’t bring Jacob back but it would make us feel like we’ve payed it forward and that he’s done his bit in finding a cure for the cancer that took him from us.

Jacob was diagnosed with Ewing’s Sarcoma in Aug ‘14 at 19 years of age. Treatment for this supposedly rare cancer has not changed in over 50 years. This type of cancer targets youth and young adults between the ages of 12-25years. The amounts of chemotherapy and radiation they receive were at levels and quantities that an adult would receive. Young, growing bodies should be given unique doses as the difference between the age groups (youth, young adult and adult) are vast. More research for trials and cures are greatly needed. I’m sure the way to go is along the lines of immunotherapy in which your own body and cells works it’s magic in curing itself. Jacob had his own stem cells taken out in the case of a relapse after being in a long period of remission. But he was never in the situation where this was possible. He relapsed with the disease taking over at a nasty accelerated rate. We pool money religiously into fundraising events to hopefully find cures but the rare cancers never see a cent, the more well known, highly advertised cancers get the exposure needed. People world wide are being cured from Leukaemia, breast cancer, melanoma and bowel cancer. Yet the statistics of Ewing’s Sarcoma are low. If a person is diagnosed with metastatic Ewing’s (meaning that it has spread to other areas) 25-30% of people are alive in 5 years time after treatment. We always thought that Jacob would be in that percentage. Someone had to be included in those statistics and why shouldn’t it have been Jacob. It was the type of positivity we needed to get him through the most horrible time in his young life.

We need a well known member of the public to take on an advocate role for our youth. Someone in the public eye to be a spokesperson to share important knowledge to medical teams and schools about Sarcoma awareness. Someone that people look up too, particularly the youth, the vulnerable cluster of humanity this disease targets. I have a few people in mind – Beau Ryan and Matty Johns are prominent figures in the sporting industry who would suit the role as they are already heroes to many youth and young adults today. If they begin to speak of the symptoms associated with sarcoma in detail with messages that will be heard and absorbed in young impressionable minds, treatments may begin a lot sooner and more lives will be saved as they are often misdiagnosed with sporting injuries instead of something more sinister. Time is critical.

Many local medical practitioners have never heard of the many types of sarcoma and what it’s doing to our future generations and are often in a position where it’s in the ‘too hard basket’ to deal with and they refer the patient to someone else. Wouldn’t it be wonderful if we had these advocates for our youth who shared knowledge and wise words to targeted audiences so they could live out their dreams and live long healthy lives they deserve.

Beau Ryan would be the better choice for me as he went to my children’s high school, lived in our neighbourhood, my husband knows his father both socially and professionally and he was a player in my favourite rugby league team the Cronulla Sharks and Jacob’s favourite team West Tigers.

Sarcoma awareness colour is yellow, breast cancer is pink, black for melanoma, orange for leukaemia, just to name a few – all the colours of the rainbow represent a different cancer. With a cure for all the cancers in the world the impression of a rainbow will be different. Without cancer we will be like a rainbow – live a colourful life, be an inspiration, bring unexpected joy, see beauty in life’s curves and be someone to look up to.