Guest Blog Post – Owen_and_glioblastoma

Welcome back to another guest blog post! Today we have Jane Copland telling us about her brother, Owen’s story.

Owens diagnosis was something that will haunt us forever as a family.

In late October 2020 Owen was picked up by my mum from his university flat where he had been isolating for two weeks due to a potential positive covid test from a flatmate. Owen had been having symptoms such as memory loss, severe headaches (especially when lying down) and fatigue for a few weeks but couldn’t quite put his finger on what was wrong. On top of that his aggressive brain tumour had already been growing rapidly and was affecting normal cognition to the point he wasn’t really fully conscious 100% of the time.

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I’m sat here writing this after only four months of the stuff you can only imagine in nightmares, whilst Owen lays in his bed downstairs, sleeping the majority of the day. 

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As Owens older sister, all I want to do is understand and protect him from all of this, but as a family we tried everything and unfortunately our love & care hasn’t come close to being enough to save him. That’s something that hurts!

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When Owen was brought back to our home he was quite unresponsive and was experiencing nausea and vomiting. He kept telling us loved us and got really confused with what was happening to him. His eyes constantly rolled back into his head. 

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“Owen apologised” 

My mum tried to get Owen a GP appointment but couldn’t get through to the doctors. She was advised by 111 to take him to A&E and Owen was left sitting alone for four hours slumped in a chair semi-unconscious. Then without official assessments he was released without telling my mum anything. Owen didn’t remember what happened in A&E but my mum assumed he wouldn’t be sent home without being checked & everything should now be ok. Two days later symptoms didn’t seem to get any better and Owen was slurring his speech, had weakness down his right side and not really wanting to eat or drink. My mum rang 111 who arranged an ambulance to come to our house & the staff were rude to my mum explaining there are people with “rta’s, heart attacks & cancer that need ambulances”. Owen apologised.

“Don’t Panic”

The next day Owen was still the same and my mum rang a local health practise centre who recommended A&E – to which Owen shook his head, because of the energy it would take to sit alone in the waiting room! Later that day Owen collapsed unconscious and an ambulance came to the house and said all of his observations were fine and told my mum “don’t panic”. My parents were told that everyone’s eyes roll back and if they were concerned they should to take Owen to A&E. My parents then took Owen to hospital & Owen was given a drip and released, my mum asking for scans was told they’re not done routinely and they can cause cancer and other problems down the line! 

The next week was spent with my mum trying to frantically do what she’d been told… “make a doctors appointment”. Except she tried all day everyday whilst watching Owen slip away in front of her, no one helping. Owen was unable to look at his phone but as a 20 year old man he was expected to get himself help. My mum was told Owen had to fill in an e-consult and my mum did it on Owens behalf. As my mum was filling in the online form (which later turned out to be an assessment for mental health) she potentially clicked the wrong button regarding self-harming, this lead to her calling the surgery and being told they can’t help Owen as he “self harms”. My mum was in shock, she didn’t know why no-one would help her baby. My mum then rang a mental health line who said it was physical so they couldn’t help!

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At a loss my mum took Owen to A&E and told them she was Owens carer and she had to stay with him… it all went from there… a CT went to a brain lesion, an MRI went to an aggressive Glioma Tumour, semi-emergency surgery went to Glioblastoma Multiforme Grade 4, GBM went to two small spots on the spine and then we found out a potential 12-18 month prognosis through a Google search. Owen sailed through recovery from his surgery and came home from the Walton centre after 7 days! The only side-effect (due to the necessary controlled brain damage during surgery) was word finding problems but he was still our Owen 💛

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The hardest thing has been watching Owen go through what no person I’ve met has gone through and having to break it to him that he will never be cured and this isn’t the type of cancer that just ‘goes away’. At 25 I don’t know how I would take it but Owen being 20 and keeping a smile on his face and saying “it is what it is” and telling us all how much he loves us and just appreciating how much we all love and care for him got us all through this. He is the most brave, special, kind, gentle soul I’ll ever know. And I’m so proud of him.

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“This cancer will kill him”

The standard of care treatment to keep the tumour at bay was surgery and then combined chemo and radio therapy. The consultant told my mum (in the meeting she had to face alone) with Owen that “this cancer will kill him”. Owen had 6 weeks of radiotherapy alone as his was more intense with it being full brain and full spine. It wasn’t easy but he didn’t break! He kept his head up. 

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Three weeks after his radiotherapy finished Owen became increasingly tired and his chemo was pushed back… then came sickness.  Worrying about Owens steroids and anti-seizure meds staying down we decided to call 999. Owen was taken to A&E in an ambulance after his cancer centre told us they were closed at weekends and the out of hours GP was taking too long to come and give Owen an anti-sickness injection. We were asked if the symptoms had worsened and the reason why we called 999 as though this wasn’t an emergency… Later in hospital we were told Owen had mild Hydrocephalus and not much change to his tumour compared to his January scan. What a relief! Owen was asked at his lowest point in the Acute Medical Unit about resuscitation when he couldn’t eat, speak or sleep and was exhausted. Owen was put on a driver to control his sickness and discharged. The next day Owen didn’t seem quite right so we contacted his cancer centre for him to be admitted but we were asked “what does Owen want?”. Owen was not speaking and just sleeping, his heart rate was 54 when it is normally 115, Owen wanted to feel better. Finally we had him taken in and his blood pressure was low and his heart rate now 45, his extremities were cold. The following day there was an MDT meeting and then the day after we were told Owen could have 2-3 days to live as half his brain was full of tumour and the swelling was pressing on the brain stem. 

We made arrangements for Owen to come home and Owen asked his girlfriend to marry him. They had a beautiful commitment ceremony the day after he arrived home which was organised amazingly by his course mates in just under a day! 

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My mum often calls GBM a “Great Big Mess” and I think she’s right… from the lack of research, to the poor diagnoses, to the lack of communication between the NHS, to the actual cancer itself. It’s all massive a mess! And we’ve had to just sit and watch and scramble for help the whole way along whilst this bulldozer comes and ploughs down the most perfect innocent boy we know.

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In answer to the question “what is the purpose of life now?”… as much as I’d love to say to enjoy every day like it’s your last and leave it at that .. it’s not what comes to mind …

Our purpose is Owen, always will be…

Justice for Owen, truth for Owen, ownership for Owen, love for Owen, change for Owen.

.. & Owen WE’LL GET IT. 

💛💛💛

#KeepGoinOwen

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Thank you so much for reading, if you want to give them your support you can find them on Instagram – owen_and_glioblastoma.

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