Brooke – “ I was born in Ballina District Hospital in 1982. We spent some time in Newrybar then we moved to Avalon on the Northern Beaches of Sydney. I lived in Bondi and did the Bondi thing as lots of us did when we were young.
Some friends introduced Joel and I to each other. He was in Melbourne at the time and I flew to Melbourne for our first date and ended up moving to Melbourne a month later. Joel was diagnosed with his brain tumour about 12 years ago. On our first date I remember, we were in Fitzroy and he said … Well, I have a brain tumour. I was kind of like. Ok! I guess it just didn’t even matter in the scheme of things. It was under control. Joel had radiation and chemo years before and it was stable. The first year and a bit it didn’t really come into play or cause any drama. We just fell in love instantly. It was beautiful. We went straight into living together which was interesting for him. I’m a bit of a handful (laughs).
We live a really gentle existence. I love cooking and just being with my family. One day we went for a checkup and the tumour was back. Joel always had seizures but he was having more than normal, especially being on seizure medication. Unfortunately that is part and parcel of having a brain tumour. He takes his meds daily and I know it affects his morale and his going out in public, especially when we were living in a city, the fear of having those seizures, it would obstruct him doing things or going places. You can’t imagine how that feels, someone who has never had a seizure. All I can do is be there, support him and make sure he’s comfortable through the seizure. He was having more but we never thought the tumour would come back.
We look to Joel and Anita (last HOL story) for advice on all sorts of different things. Finding groups throughout the world who are dealing with this, different treatments, different protocols you can try to do yourself. There’s heaps of things we can try but when you’re told there’s nothing that can be done it just doesn’t make any sense. It was too close to have radiation again so he went on oral chemo 5 days a week for 6 months. He still worked on a job site doing chemo. He blows me away. He kept doing those rounds till it stopped responding. It was reducing though and we were so excited. That’s when we decided to move back to the Northern Rivers. My whole family was back here so it made sense to come back.
We have been here for 4 years in Mullumbimby. My whole family is up here now which is great. When we were in Melbourne the tumour reacted really well to radiation. So now that it has returned, Joel was always told that it was inoperable. He always believed there was nothing that could be done. Surgery just wasn’t an option. It wasn’t in his path. We hadn’t even thought about it. I had numerous people talk to me about Charlie Teo.
We were fine for another 6 months and then we went for a check up and it wasn’t. The tumour was back so Joel went on chemo again. We’d had an amazing team in Melbourne which we had to abandon and start a new team up here based on a referral. Who do you trust? Who do we believe? It’s like these people have your lives in their hands. Who’s your best gut feeling?
We went up to Brisbane and we didn’t gel. Oncologists are much like therapists. You really need to be on the same wave length. You also want a bit of heart, not just the next patient thing. It’s a fine line. The Oncologist we saw was so blunt and cold. A bit later after seeing him Joel was have more seizures so I rang him and told him. This was 2 years ago. Joel’s parents had flown over from NZ and we were all in the Doctor’s room. He said… ‘It’s not working’ and we said, So what do we do now? He gestured to an invisible bag on the ground and said, ‘I have no more tricks in my bag’. Joels parents, myself and Joel are standing there going… What do you mean? He said… ‘There is nothing that can be done’……You don’t ever tell me that. That just doesn’t fit. That was so awful. They handed us a shitty tissue box which was like one ply sandpaper. We fell out of that room.”
Some friends introduced Joel and I to each other. He was in Melbourne at the time and I flew to Melbourne for our first date and ended up moving to Melbourne a month later. Joel was diagnosed with his brain tumour about 12 years ago. On our first date I remember, we were in Fitzroy and he said … Well, I have a brain tumour. I was kind of like. Ok! I guess it just didn’t even matter in the scheme of things. It was under control. Joel had radiation and chemo years before and it was stable. The first year and a bit it didn’t really come into play or cause any drama. We just fell in love instantly. It was beautiful. We went straight into living together which was interesting for him. I’m a bit of a handful (laughs).
We live a really gentle existence. I love cooking and just being with my family. One day we went for a checkup and the tumour was back. Joel always had seizures but he was having more than normal, especially being on seizure medication. Unfortunately that is part and parcel of having a brain tumour. He takes his meds daily and I know it affects his morale and his going out in public, especially when we were living in a city, the fear of having those seizures, it would obstruct him doing things or going places. You can’t imagine how that feels, someone who has never had a seizure. All I can do is be there, support him and make sure he’s comfortable through the seizure. He was having more but we never thought the tumour would come back.
We look to Joel and Anita (last HOL story) for advice on all sorts of different things. Finding groups throughout the world who are dealing with this, different treatments, different protocols you can try to do yourself. There’s heaps of things we can try but when you’re told there’s nothing that can be done it just doesn’t make any sense. It was too close to have radiation again so he went on oral chemo 5 days a week for 6 months. He still worked on a job site doing chemo. He blows me away. He kept doing those rounds till it stopped responding. It was reducing though and we were so excited. That’s when we decided to move back to the Northern Rivers. My whole family was back here so it made sense to come back.
We have been here for 4 years in Mullumbimby. My whole family is up here now which is great. When we were in Melbourne the tumour reacted really well to radiation. So now that it has returned, Joel was always told that it was inoperable. He always believed there was nothing that could be done. Surgery just wasn’t an option. It wasn’t in his path. We hadn’t even thought about it. I had numerous people talk to me about Charlie Teo.
We were fine for another 6 months and then we went for a check up and it wasn’t. The tumour was back so Joel went on chemo again. We’d had an amazing team in Melbourne which we had to abandon and start a new team up here based on a referral. Who do you trust? Who do we believe? It’s like these people have your lives in their hands. Who’s your best gut feeling?
We went up to Brisbane and we didn’t gel. Oncologists are much like therapists. You really need to be on the same wave length. You also want a bit of heart, not just the next patient thing. It’s a fine line. The Oncologist we saw was so blunt and cold. A bit later after seeing him Joel was have more seizures so I rang him and told him. This was 2 years ago. Joel’s parents had flown over from NZ and we were all in the Doctor’s room. He said… ‘It’s not working’ and we said, So what do we do now? He gestured to an invisible bag on the ground and said, ‘I have no more tricks in my bag’. Joels parents, myself and Joel are standing there going… What do you mean? He said… ‘There is nothing that can be done’……You don’t ever tell me that. That just doesn’t fit. That was so awful. They handed us a shitty tissue box which was like one ply sandpaper. We fell out of that room.”