Bionic Life is Expensive

Product Description

City of London, City of London, United Kingdom

Supporters

“Leg Status”: A 6 minute movie about how Ollie became separated from his leg.

Ollie was diagnosed with osteosarcoma in the fall of 2014, a few months after his 24th birthday. About 500 people are diagnosed every year in the UK: half are elderly and the other half are mostly kids and teenagers who are taller than average. It’s the cancer that killed Terry Fox, Clouds singer, Zach Sobiech and Camera Obscura bassist, Carey Lander.

By the time he was diagnosed, Ollie could hardly walk and was asleep most of the time. His tumour was 19cm x 14cm which in bone cancer terms is huge. Cancerous bone cells had spread outside of the bone wall and infiltrated the surrounding tissue and muscle; his thigh muscle was literally composed of bone.

Ollie chose to have an amputation. The other option was what’s called “limb salvage” surgery where the surgeon removes the cancerous bone, muscle and tissue and replaces it with a cadaver bone or titanium rod. It’s essentially like wearing a prosthetic under your skin.

This is the option most patients choose because it means you get to look down and see two feet. But after a load of research and thinking it over, Ollie decided that looking down and seeing two feet was less important than other things. The considerations involved in this decision are here if you’re interested.

Ollie will tell you that having his leg removed was by far the easiest part of treatment. The chemotherapy regime for bone cancers is particularly brutal and he had every possible complication.

Ollie was in a wheelchair for 18 months. He hated it. I was his main driver and apparently an aggressive tailgater of innocent pedestrians. (In my defence, the sidewalks of central London are always congested and we were usually rushing to the hospital in crisis). As as soon as treatment was over, he wanted me removed from the position and no one new to fill it.

Like a lot of people who lose a leg above the knee, Ollie had trouble getting a wearable socket. The socket is by far the most important part of a prosthetic leg because it bears all the body’s weight. A bigger stump is better because it provides more surface area; Ollie’s stump is small. Sockets are custom made and they range widely in quality of design.

Ollie had two sockets made by the NHS. They each took 3 months to make and neither allowed him to take more than a few steps. We considered alternatives to walk– like one of these cool scooters– but after a thorough search and evaluation we found Alex.

We could go on about the wonders of Alex but let’s just say he makes sockets for people who have problematic stumps and have failed to get a wearable leg anywhere else. He invites you to his clinic in Hamburg and all but guarantees you’ll walk out of there.

Three trips to Hamburg and 100 hours of labour later, Ollie walks comfortably. He uses a cane and looks like a bionic cross between House, MD and Fred Astaire. He burns as many calories walking as I would if I did non-stop burpees.

The only thing bad about Alex is that he lives in another country and is not covered by insurance. Prosthetics manufacturers don’t sell directly to the public (only to prosthetists) so prices are inflated. So far we’ve bought a foot, a rotation adaptor, and a belt on eBay. Alex will instruct Ollie on how to make his own leg adjustments via Skype.

Eventually Ollie might want a more sophisticated knee. He currently uses a beginner knee because it’s light but he can’t go up and down hills or squat, and he has to take stairs one step at a time. If he decides to do sports or run he’d need a running blade. And when his stump has lost its baby fat– in about 2 years– he’ll need a new socket which should be the last socket he needs. We appreciate any kind of support.

Ollie and I met in Berkeley, California just over a year before he got sick. We were married in London in the shortest ceremony of all time when Ollie had a platelet count of 1, an unknown infection and so many mouth ulcers he could hardly answer The Question.

I’m also CEO of Ollie’s Cancer Strategy Corps. I’ve done a huge amount of research and analysis on amputation vs limb salvage surgery; how to understand treatment differences across countries; how to evaluate treatment options; and just generally how to problem solve in a public health care context. If any of this might be useful to you feel free to get in touch.

Chuffed.org has no platform fees — one of the reasons we chose it– only a 1.5% credit/debit card processing fee. However, when you go to donate it will suggest you make a contribution to the site (which you can easily delete if you choose). If you would like to avoid fees altogether, you can donate directly to us and we’ll add it to the total. Just send us a note. THANK YOU.

Anonymous

8 years ago

£50

George Gemmill

8 years ago

£75

Aaron Schroeder

8 years ago

£20

On Ting Lam

8 years ago

£50

Tom Christian

8 years ago

£50

Hugh Langis

8 years ago

£50

Anonymous

8 years ago

£50

MICHAEL MCINNES

8 years ago

£20

Maria Mendez

8 years ago

£40

Judith Paras

8 years ago

£20

Nancy Hardwick

8 years ago

£10

Adam Egglestone

8 years ago

£50

Heather Ryan

8 years ago

£50

clare hollingsworth

8 years ago

£20

Smita Kothari

8 years ago

– Offline donation

£116

Julieanne Albino

8 years ago

– Offline donation

£290

D & F Antoniazzi

9 years ago

– Offline donation

£400

Jack Hewitt

9 years ago

£15

Jennifer Hawkin

9 years ago

£20

Anonymous

9 years ago

£5

George Gemmill

Sorry – have been meaning to donate for some time. Wishing you all the best Ollie!

8 years ago

MICHAEL MCINNES

Hi Ollie, I’m an old school friend of your dad’s. He showed us your video when we met up on the narrowboat in June. Really inspiring and great to see how things are improving after that terrible treatment you had to go through. All the best, Mike

8 years ago

Judith Paras

Blessings to you both … you’re in my prayers. Incidentally, I’m Andrea Paras’ Mom, and she shared your story with me when I was visiting her & Phuntsok in August.

8 years ago

Nancy Hardwick

Loving the zest for life that this film shows. Hope you get target money you need.x

8 years ago

Jack Hewitt

Incredibly sad to hear about your struggle mate, but amazed at how you seem to be approaching it. Keep on pushing, Jack

9 years ago

Maxine Roberts

Wishing you health and happiness

9 years ago

Amanda Chang

sorry couldn’t contribute more, but here’s what I have to give atm. sincerely wish you two the best! <3 9 years ago Elizabeth Ventrella With best wishes Ollie from Liz Ventrella x 9 years ago Sandra D Hoffman You are two amazing people! 9 years ago Naomi Bendavid Pretty good directorial debut ;) Glad you're getting the story out there! Xo Naomi & Damian 9 years ago Debra-Lee Holman Thanks to Tam O Rama for spreading the word and allowing friends to assist friends xxx 9 years ago Michael Staight Great videos guys. Still think this one might be your best Ollie: https://www.youtube.com/watch?v=NE3myZowOSY 9 years ago Sophie Carefull You are both fantastic and I admire you so much xxx 9 years ago Tom Palmer Good to see you on your feet again! Wishing you all the best. 9 years ago Tom Palmer Good to see you on your feet again! Wishing you all the best. 9 years ago Lawson Taylor I wish you the best of luck Ollie! 9 years ago Hugh Jarvis You are both remarkable people. Good luck on your journey. 9 years ago Mary Albino & Oliver Carefull