Consumer stories: Rebecca
Transcript
My husband became quite unwell. He was otherwise a very fit and healthy person, and one day he developed a headache. And what we assumed was just an innocent headache turned out to be something really serious, though. He had glioblastoma, a Grade 4 brain tumor, brain cancer. And so that’s sadly where our journey began.
The doctors had that difficult conversation with us, and we were linked in with the palliative care unit. And at that point in time, while I will admit, having been a nurse, I really didn’t know what palliative care was about, and I was scared. I thought, it’s end of life, it’s death and dying. And I really didn’t know how palliative care, other than supporting the symptoms, how they could actually support us as a family unit.
Fortunately, the team were really supportive. So we had a lot of meetings with the doctors, the nurses, social workers, and I got to know more about how they could help me. So at that point in time, a little bit about my home situation. We had little children, so we had a lot going on at home in our personal life. And so it was really stressful and difficult for me to be a mum, to manage the children, be a wife, and look after my husband, who’s got a terminal condition. And so the palliative care unit really did support us.
They went over and beyond from the day to day, his pain relief, but also supporting us as a family, activities for the children, memory boxes, things that I’ve never heard of and things that I would never have thought of. They suggested having things that the children would cherish for the rest of their lives. So, like teddy bears that were kept with Daddy to this very day. My children both have those bears in their bedroom. So things like that, that without palliative care, I would never have even thought of that, and they’re memories that I will cherish forever.
He’s someone who really enjoyed the outdoors, so he would love going to the beach, being by the water. And there were times when he actually said to me, “I really want to go to the beach.” But at that point, he was too unwell. Mobility was an issue, and there was no way for us to actually take him there. And I just kept that to myself, and it’s something that really upsets me to this very day. So whenever I go to the water, I think of him, and I wish I knew how I could have helped him more.
So after he passed away, I became aware of how the ambulance service can assist families who have someone who’s unwell or dying. So I believe they’re called Ambulance Wish Queensland. I think it was just someone had mentioned that, and I wish if I knew at the time, I would have asked. And it’s not to say that the palliative care team wouldn’t have offered this to me, but they probably didn’t know, and I didn’t know that I could actually ask this question.
At the end of the day, I’m left with memories, and I’m left with some really difficult ones when he was really unwell, but I’ve got obviously a lot of positive memories as well, and really positive memories with how the service helped us as a family. Sometimes as family members, as loved ones, we don’t always know the right questions to ask. So maybe with permission, taking the time to help us ask the questions. So I’m not sort of saying feeding the words into our mouth, but I didn’t know what I could ask. So perhaps there could have been other stories that could have been shared with me, other patients within palliative care, things that have worked for others. I just didn’t know. So I think that would have helped me.
When we receive shocking or tragic news, we go numb, and I think that’s what happened with me. I went really numb, and I just needed someone to guide me. And I know that when it comes to healthcare, client consent, and being a healthcare professional myself, we don’t want to tell the client what to do, but that’s what I needed at the time. I needed more support, whether it was a family member to advocate. I was advocating for my husband, but I needed someone to advocate for me, perhaps. It really does matter because these are memories that often and sadly, many people will carry and cherish for the rest of their lives.
And yes, they are sad, but having the opportunity today to discuss my husband’s journey, I hope that I can help other families, and just reassure them that we are really lucky to have an amazing health service. And it really just takes if you ask the right questions and don’t feel reluctant to or feel that, oh, you shouldn’t ask this question because I think there are people out there who can help you, or if they can’t, they can direct you to someone else. And, yeah.