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Support Marcus Flintoff and his family to fight brain cancer

  • 1 May Update - Written by Kara

      19 June 2021
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    It's been exactly 3 months since Marcus was diagnosed with a brain tumour and life suddenly flipped upside down for us. So much has changed in our lives and our direction, but we feel like we are just beginning to find our feet on this journey we have to take.

    Marcus is almost finished with Phase 1 of his treatment (6 weeks of radiation and oral chemotherapy). This has been an absolutely gruelling time and the last few weeks have been the hardest as the side effects of brain radiation take their toll; extreme fatigue, hair loss, constant headaches, nausea, and tremors in his left hand and foot. Marcus is currently on a course of steroids to help reduce the brain swelling that radiation causes. We are both so glad for radiation to finish this week and for the 4 week reprieve before starting Phase 2 (6 rounds of high dose oral chemotherapy).

    Despite the extreme fatigue and nausea, as well as dealing with a prolapsed spinal disc and interspinous oedema, Marcus pushes through with determination to continue his rehab. We know that neuroplasticity (the brain's potential to rewire and relearn) is highest in the first 3-6 months after an acquired brain injury, so the more rehab he can do now, the better his physical recovery will be. It has been so inspiring to witness his hard work and improvement. We are thankful to everyone on our team helping Marcus: his oncology team, physio and OT, orthopedic specialist, nutritionist and herbalist Patrice, and acupuncturist Matthew at PrimeCare Acupuncture Clinic.

    Marcus has been home for about 4 weeks which makes life so much better for us both. There are difficulties to overcome with the house and his mobility, and things have been absolutely hectic, but Marcus is so much happier at home with me and our fur-family. Thank you to the wonderful friends and family who have visited us, driven Marcus to radiation to give me a break, brought baking and meals over during the weeks we had 5 appointments a day, dropped off cards, and gifted Marcus activities to do, which have been awesome rehabilitation exercises and much more fun than physio! We love and appreciate you so much and it's been lovely having some friendships blossom during the hardest of times.

    May is Brain Cancer Awareness Month, hence the hashtag #GoGreyInMay. We were only vaguely aware of brain cancer and its devastating impacts before it hit us like a freight train. Over this month, we will be posting more about brain cancer, Marcus's tumour, and potential treatments, in the hope of creating more awareness of what it means to be living with a brain tumour. 🧠🎗

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  • 23 March Update

      19 June 2021
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    So nice to get out of those four walls together for a few weekend outings! Thank you family and friends for being so amazing.

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  • 20 March Update - Written by Kara

      19 June 2021
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    It’s been 6 weeks since our lives changed forever. I’ll never forget the feeling, a day after being told Marcus had a stroke, when the doctor came in with a serious expression and closed the curtains around the hospital bed. Our stomachs dropped, we knew instantly that it was worse, and then the doctor told us that it wasn’t a stroke, it was a large brain tumour in Marcus’s right frontal lobe.

    Last week we experienced a similar feeling. We met with Marcus’s oncologist to discuss his histology results and treatment plan. We were expecting a Grade 2 (of 4) Low-Grade Glioma, but histology confirmed a Grade 3 Astrocytoma, a high-grade malignant tumour. Unfortunately, the surgeons were not able to remove the entire orange sized tumour; part of it is too close to Marcus’s motor cortex and too dangerous to resect, so about 1cm remains. Because of this, Marcus is going to be having the most aggressive treatment currently funded in NZ. This is six weeks of radiation therapy alongside concurrent oral chemotherapy Temozolomide, followed by another six cycles of Temozolomide over six months.

    Hearing this was like taking a sucker punch to the guts; we were winded for a while and we are just starting to breathe again. As can only be expected, last week was a mess. A dark week full of shock, grief, and painful emotions. Feeling like our future had been ripped out from beneath our feet - everything you assume is guaranteed to you in life when you are young. We are finding out earlier than some of our friends that this is not the case. Nothing is guaranteed. That is part of the process we have to go through, and there will be more dark days ahead, but this week has been better. The way forward for us is to accept the diagnosis, not the prognosis. We are choosing not to live based on other people’s stories. Ultimately, we will make our own story through this journey. We have chosen to focus on the next six months and put our energy into Marcus regaining his health.

    On that note, Marcus is absolutely smashing his rehabilitation! He has gone from learning how to walk again in a harness with manual manipulation of his left leg, to walking in the harness without assistance, and is now out of the harness and learning how to walk short distances with a quad stick. Today, we got the go ahead to take outings on the weekends to wheelchair accessible places, which is very exciting since Marcus hasn’t seen the outside of a hospital for almost 2 months! We both can't wait until Marcus comes home for weekends and later comes home and continues his treatment as an outpatient. I am beyond proud and inspired by how hard Marcus is working towards his goals of coming home and regaining his health and fitness.

    Highlights of the last few weeks include:

    - When Marcus’s physio - having only worked on his leg until this point - lifted his right arm to teach me a stretch. The split second of shock and bewilderment on his face as Marcus lifted his own arm, before he realised he had the wrong arm, was absolutely priceless

    - Having a shared dinner with special friends out in the lovely courtyard under the grape vines, it was the closest we have felt to “normal” in a while

    - Marcus walking without the harness and being able to give him a standing up cuddle

    - Being given the go ahead to go on day outings on the weekends

    - I cleaned/water changed a 300L fish tank and all the discus were still alive when I got home

    - Fur baby visits

    Thank you to everyone who has given us support and positivity, visited, cooked meals and baking, donated to Marcus’s Givealittle page, and helped us in any way. Special thanks to the UCOL staff who dropped off a huge box of goodies today, that will keep Marcus going for a while!

    Some things the gifted money has paid for so far include: Accommodation in Wellington, comfy clothes and pjs for Marcus, tech solutions to make things more accessible, books for my research, acupuncture, supplements Marcus will be taking, prescription CBD oil, and a consult with an integrative oncology practice overseas.

    Marcus is starting radiation and chemotherapy next week. We are combining our strength and positivity, leaning on each other and our family and friends, and looking towards discovering our new normal at the other end. Please keep us in your thoughts, and keep sending positive vibes our way. xx

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  • 28 February Update - Written by Kara

      19 June 2021
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    Over two weeks post-op already! Thank you to all our friends and family for being our support system. For the visits, the messages, the treats, the meals for the freezer, you're all amazing. You truly realise who your friends are in difficult times and we are so grateful to have so many wonderful people cocooning us right now.

    This week, Marcus was transferred to the STAR 2 Ward in Palmerston North Hospital (Specialist Treatment, Assessment and Rehabilitation ward). The team in STAR 2 are great and Marcus has nurses, doctors, physiotherapists, occupational therapists, speech therapist, psychologist, and support staff looking after him. He started physio and OT daily and has just increased to physio twice daily; learning how to transfer himself using one hand, punt a wheelchair (using one hand and one foot), and learning to walk again using a sling harness taking some of his weight. He's doing awesome in physio, never says no to a new challenge, and is making progress day by day. We also had his lovely acupuncturist PrimeCare Acupuncture Clinic visit this evening and do a treatment on his left arm and leg.

    While Marcus's surgical incision looks almost healed, the true gravity of his recovery process is starting to hit us this week. Some moments we think about how if he hadn't had the <1% complication of left side hemiparesis he would already be at home recovering from surgery. Some moments we wonder what is worse, the cancer or the paralysis. Some moments we have deep and dark thoughts. But those are moments of frustration, sadness and fear, we know surgery and aggressive treatment was the right option, and that we will get through this together. There are also moments of love, laughter, support, deep bonding, and friendship. We are trying to let those moments outweigh the bad ones.

    Though this time is extremely difficult and challenging, we have to remind ourselves of some things to be thankful for. First, that we have each other and everyone around us. Second, that most of the tumour has been removed and the surgery is done. And third, that Marcus is still himself. This was our biggest fear with such a major and extensive surgery, and our biggest relief. We are also incredibly thankful that this ward allows us to bring our fur babies in! Cashew had his turn to give Marcus some love today and Skye will have her turn tomorrow.

    Marcus is an incredible human and is handling these massive and complex life changes with a positive and determined mindset. We are all so proud of him. We are taking things day by day, but Marcus has his goal set on coming home, and we both can't wait until that day comes ❤

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  • 19 February Update - Written by Kara

      19 June 2021
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    I can’t believe it has been exactly one week since I saw Marcus post-op after his surgery, one of the most profoundly gut-wrenching moments of my life. The week since then feels like it has flashed by in an instant but dragged on forever at the same time.

    Marcus and I want to thank each and every one of you who has reached out to us, offered your support, donated to Marcus’s Givealittle page, and helped us in any way shape or form. We are so humbled and appreciative and it’s amazing to see the love pour out in our direction. We wanted to share an update and some photos that show a glimpse of the week that has been.

    Last Thursday Marcus had a craniotomy to remove a large frontal lobe brain tumour. The tumour resection went well but the surgeons weren't able to remove the whole tumour as some of it was too close to Marcus's motor cortex.

    During recovery, Marcus was initially able to verbalise but then deteriorated, so he was sent for a post-op CT which showed a subdural hematoma in his brain. By the time Marcus got back to the ward after recovery and we were able to see him, he was mostly non-verbal and was experiencing left-sided hemiplegia (paralysis of the left side of his face and limbs). Both of these post-surgical symptoms were uncommon and unexpected in Marcus's case. Marcus’s speech has already improved immensely! He may still have some speech therapy for high-level speech, especially since medical terminology is part of his job.

    During the week Marcus started to regain feeling and some reflexes in his left side. He now has much more movement of his facial muscles and eyes and small movements in his foot. This means he is experiencing left-sided hemiparesis (muscle and limb weakness), and the surgeons believe that with the brain swelling and surgical wound healing, as well as physical rehabilitation, he will be able to regain some function in his left side. Marcus has already started physical therapy and has been practising holding himself steady when sitting and even standing with support, only 5 days post-op!

    Yesterday Marcus was transferred back to Palmerston North Hospital and is in the STAR Rehabilitation ward. We are still awaiting the formal histology results and an oncology referral to find out whether Marcus will be having any radiation or chemo.

    I feel like I have been riding a rollercoaster of adrenaline rushes and exhaustion to the bone, and my head is spinning. We are trying to maintain positive mindsets and be thankful for the ‘good’ things, but we also know there will be a long journey ahead, and we both need to lean on each other and those around us. I never saw myself as a very strong person but this journey is helping me realise my inner strength, even though at times I also feel weak, helpless, and angry.

    Marcus has been so strong throughout all of this, he is so courageous and resilient and I know that all the support and love from everyone is helping to hold him up. I know he will throw himself into any physical rehabilitation challenge and is determined to take control of his life and body. His new motto is “my mind is in control, not my body”. I couldn’t be more proud of him and love him so much.

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  • 13 February 2021 Update - Post Surgery

      19 June 2021
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    Marcus had surgery on Thursday and is recovering in Wellington hospital. The neurosurgeons are happy with the surgery and were able to remove most of the tumour. We have to wait a bit longer for pathology. Unfortunately, Marcus is experiencing some uncommon post-craniotomy symptoms, so we are taking it day by day to get through those. Still keeping positive energy around him and reminding him of his inner strength. We would like to say a HUGE thank you to everyone who has donated, for all your support, kind words and wishes. It is so very very appreciated by Marcus and Kara. ❤

    *Photo from before surgery*

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