Derek's Place | Community organisation

Derek's Place

Phone: +61 408 607 864

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18.01.2022 Tash Shortly after chemo ended, our lives were flipped upside down again. I picked Derek up from work one afternoon in early July 2018. Derek was complaining of something in his eye. I didn’t want to take a chance so we went to our local medical center to check things out. The wait was long so I left him there and went and did some grocery shopping. When I returned the waiting room was full and I was patiently sitting outside thinking that Derek should be finished and out i...n any moment. It was at that point I faintly heard the receptionist say something about an ambulance and an issue with a patient. I enquired and quickly found out Derek was having a seizure in the doctors room. When the doctor first opened his door Derek was convulsing on the floor and I rushed to his side, talking to him and telling him to stay with me. I had a trolley full of food and a woman in the waiting room offered to take my things down to my car. She returned with my keys, and by then the ambulance had arrived. Dereks seizure lasted almost 20 minutes. That was too long for my liking and would come with its side effects. As we drove off in the ambulance, Derek was still out of it, but his vitals were ok. I still remember that drive, messaging our loved ones to explain the situation and arranging for someone to pick Cristian up from childcare. My fear was enormous and at times suffocated me. But at least we were in safe hands. When we arrived, Derek was rushed through and my sister Tanya, who met us there, and I were made to wait in the quiet room. I hate this room at a hospital as I associate it with death. But that wasn’t the case that day and eventually the doctor came to get me. Derek was setup in the critical area of the emergency department. I was so scared. We all were. #seizures #braincancer #glioblastoma #fightingcancer #dereksstory #raisingawareness #palliativecare #youngfamily #devastated #familystory

17.01.2022 Tash In the days following Derek's discharge from his big seizure, I picked up on some memory loss and vagueness. The memory loss I had seen before during radiation treatment but the vagueness was a new symptom. I remember feeling scared and thinking "what if this was the beginning of the end?". That fear was real and threatened our lives constantly. I rarely shared my observations with Derek about his symptoms as I didn't want to alarm him. Although he was incredibly brave,... understandably Derek did not cope well with his illness and struggled to grasp that he would die from it. The week following the big seizure Derek had time off work. He was still struggling with his left side and his medical team recommended a rest. Not knowing what the immediate future would hold and what Derek's movements would look like, I did some research and organised a life alarm for him. It also gave me peace of mind. The life alarm was a necklace with a pendant alarm which worked using the same cellular phone technology as a mobile phone. Using mobile network and in-built GPS tracking the pendant could call up to 6 emergency contacts including 000. Derek was no stranger to outpatient rehabilitation. Not long after his surgery he completed programs with a Physiotherapist and Occupational Therapist at a facility close by to our home. Within two weeks of that big seizure, appointments had been set-up again and Derek was back at it with the same providers. He had established good relationships and felt comfortable with both of them which was so important. On many occasions when Derek struggled with his mental health, having a great medical and specialist support team made a huge difference. #teamwork #mentalhealth #lifealarm #braincancer #glioblastoma #fightingcancer #dereksstory #raisingawareness #palliativecare #youngfamily #devastated #familystory See more

10.01.2022 Tash It took a few hours for Derek to recover from his long seizure but eventually he was himself again, except for a left side deficit. The medical team advised the deficit could be something called Todd’s Paresis and should subside after 48 hours. The day after the seizure Derek had an MRI and waiting for those results was probably one of the most terrifying. The results however were unclear. There was still swelling, as there had been a few weeks prior, and it was difficu...lt for the doctors to say what was happening. We had been planning a trip to Fiji since the start of the year and had been holding out until Dereks chemotherapy treatment was finished. Unfortunately the seizure meant we couldn’t travel, his doctors didn’t feel comfortable with it and neither did I, so it was the right thing to do. We were disappointed of course but I quickly refocused and made a new plan for a Sydney vacation. After 2 nights in hospital Derek was discharged. He was still struggling with his left side and whilst the Physio had cleared him to leave, referrals for rehab were put into motion. There was some changes made to his medication, as there usually was after a seizure. Appointments scheduled and a great desire to return home. We were no strangers to the hospital by this point in our journey and Cristian was always there, not for long but just enough each day. It was important for Derek and I to keep Cristian close to us. The uncertainty of what next had us all on edge but being together as a family each step of the way kept us stronger. #changeofplan #stayingstrong #MRI #braincancer #glioblastoma #fightingcancer #dereksstory #raisingawareness #palliativecare #youngfamily #devastated #familystory See more

09.01.2022 Tash My parents headed back to Uruguay in May 2018 which left a gap for me with day-to-day support for Derek. Living downstairs, they had been able to look after Cristian whenever I needed to take Derek to work or appointments. Once they were gone though, we quickly found our groove. Derek, Cristian and I were all out of the house by approximately 6:15am each work day. This was no easy task, but once we were in the car we had fun and more memories were created. Derek and I... loved listening to music together and our car rides became a bit of a disco scene. Cristian learnt the words to songs and discovered favourites. Derek’s passenger road rage was in full flight, but we had lots of laughs along the way. Each mornings drive was never complete without a service station pit stop that included a coffee for Derek and a treat for Cristian, of course. Once we dropped Derek at work, Cristian and I headed off to start our day. Our morning road trips weren’t a long part of the overall journey as the next chapter of our lives wasn’t far away. That period of time in our lives, whilst super challenging for me to juggle, was fulfilling and brought us all closer together. What I would give to have those moments together again. #together #roadtrips #familytime #livinglife #braincancer #glioblastoma #fightingcancer #dereksstory #raisingawareness #palliativecare #youngfamily #devastated #familystory

02.01.2022 Rachel Our sister Kimmy has lived overseas for 25 years. Despite the physical distance between us, we've always been a close family, so her visits to Australia are always cause for celebration and a flurry of activity. We always try to cram a years’ worth of memories into a few short weeks. In March 2018, Kimmy worked with Tash and me to spring a surprise visit on Derek and our parents. I collected her and her two beautiful daughters from the airport on a Saturday morning an...d we drove straight to Top Ryde shopping centre for the big reveal and breakfast together. There is no describing the delight those three brought with them. In the ten days they were here we had my daughter, Lily’s birthday party, went to dinner in Darling Harbour, attended the West Ryde Easter Fair, got out to the Easter Show, swam at the aquatic centre at Homebush and shared a whole lot of laughs around the dinner table each night. I remember feeling the same lightness I’ve always felt when our whole family is together, it isn’t actually possible to describe the joy. But with it, came a tiny nagging voice in the back of my head asking, "how many more of these will we get together?. The answer turned out to be - two, but they were never the same as this particular visit in which Derek was still able bodied and could do all the things we wanted to do as a family. If there is anything at all that Derek’s illness has taught me about life, it is to make memories while the sun shines. #memories #livinginthemoment #families #braincancer #glioblastoma #fightingcancer #dereksstory #raisingawareness #palliativecare #youngfamily #devastated #familystory See more

02.01.2022 Tash Almost two weeks after Derek’s last MRI, we were back at the hospital for another scan. Scanxiety, as we came to know it (anxiety before a scan) really took hold of Derek and I in the days leading up to CT-Scans and MRI’s. I still remember how cold and numb I would feel as soon as Derek left the waiting room to go through for his scan. I would try to distract myself and attempt to do some work but the nerves running through my entire body were intense. I suspected that ...something wasn’t right, given Derek’s symptoms in the days leading up to the MRI. And the scan that day confirmed our worst fears. The tumour was growing back. This explained the swelling and why his left side was still an issue. The tumour was pushing against the part of the brain that controls movement. We were completely devastated. Derek and I both began to cry and hugged each other whilst our world stood still. Nothing can prepare you for those moments. I feared them so much and whilst I expected the tumour to grow again, I had hoped we would have more time before it did. Derek’s medical team were amazing, they were straight onto a new plan of attack. Within less than an hour Derek was receiving a drug infusion to help with the swelling. They had already put the wheels into motion following his last seizure and applied for a drug from the USA on compassionate grounds. The way that Glioblastoma unfolds is quite typical and his medical team were a step ahead and predicated what might be about to unfold. #MRI #devastation #changeofplan #tumourgrowth #braincancer #glioblastoma #fightingcancer #dereksstory #raisingawareness #palliativecare #youngfamily #devastated #familystory See more