Carer for sarcoma patient
As Julian's carer, Sally was supported by Reframe
What did we do that was different?
Julian’s treatment included an 8-hour operation, an understandably worrying aspect of treatment for Julian, Sally and his friends and family.
Sally wanted to manage the expectations of others in regards to Julian’s recovery from the operation and she needed informational accuracy and experience. Rebecca, our Cancer Nurse Specialist helped by answering Sally’s questions honestly.
“Rebecca was very honest about the recovery from the first operation…and it did actually happen exactly like Rebecca said…even though it was more depressing in a way knowing how long the recovery was going to be…she was very helpful, and that was quite hard emotionally to deal with that.”
“One of the hardest things I think was to manage expectations and Rebecca was so good because she always knew that. I kind of knew more than what I let on to Julian because I didn't want to look too negative to him. I knew it was going to be bigger than what he was maybe mentally preparing himself for, just because of how much she helped me.”
Communicating and organising all the appointments for Julian, as well as normal day-to-day life and work, was a combination that Sally found draining, it was a big relief to have help and support from her dedicated Reframe team.
Alongside Rebecca, Lorraine, one of Reframe’s Cancer Support Managers, supported Sally, contacting, and chasing appointments on her behalf when needed.
“You're mentally drained. You're so concerned about all these different elements. Then to try and then chase the hospital which is exhausting when you're in your normal state of mind. I think that that's why having them there was just such a godsend because I couldn’t have done it alone.”
“Sometimes, as a patient, you can feel a bit of a burden. Whereas when I checked in with Lorraine and Rebecca, I wasn't just doing it for the sake of ringing, I knew that I had their backing, and I didn’t feel like a burden. It settled my mind that I wasn’t worrying unnecessarily, and then they would ring up on my behalf. It felt like it was more genuine that they were ringing as well. Because they know their medical terms. They kind of seem part of the team for the hospital to speak to them a lot. It really helped with the stresses at that time as well with those appointments.”
“Rebecca would be in contact with me and say we've kept trying, we try sometimes all day to be able to get hold of the right department. As a business. You need that whole day to be running your business. It is a very small window to get hold of these different departments.”
Whilst being supported by Reframe, Sally gained invaluable guidance, support and reassurance from both Lorraine and Rebecca.
In order to not worry Julian’s family and friends, Sally turned to the Reframe team to voice negative thoughts and concerns. Sally took solace from the understanding and uplifting support from Rebecca and Lorraine, especially during times when Julian’s family were less positive.
“When we spoke to anyone else, they were very negative. Friends and family, understandably, were doom and gloom. Whereas Rebecca and Lorraine were very positive. They were very understanding, and we'd go through a wave of emotions. They were so empathetic, it felt at times that they just genuinely felt our pain. And then they always lifted us because they were very matter-of-fact, which is what friends and family aren't. They understand it from every single aspect, obviously, you don't tell everybody all the different appointments you've been to and all the different conversations you've had. So even down to the first operation, I was honest with Rebecca and Lorraine, sharing that we were worried about Julian losing his leg because I knew that it was a genuine concern. I can't tell his daughters that, or his friends that because you don't want them to know that. They just understood. They were so positive even though they knew all the risks, just like me, so that was the benefit. I think that they kept us moving forward.”
“Rebecca and Lorraine always knew exactly what date was coming up. They've obviously got a diary. They'd say good luck with the following appointment. How did it go? It felts like they cared as well, and they'd even message me over a weekend. Take the actual operation, I was really concerned about how long the operation would be and they contacted me out of hours, just to check that I was okay. They went that extra mile. They genuinely cared, it isn’t just a nine-to-five job for Rebecca and Lorraine, and you can tell that they are genuine people.”
Our team feels like friends
Sally always felt supported by Lorraine and Rebecca, no question was too small or concern too big to share and discuss with them.
“They feel like friends as well I know it's their job, but they feel like great friends now because you've had so many highs, lows and laughs and I feel like we know them so well.”
“Rebecca also understands the medical and operative side of cancer. It is the same if you speak to somebody that's had cancer, you're on the same wavelength. I think that would be the same for anybody that takes up the service. If you can speak to somebody that's already been through it. It just seems like an extra kind of help.”
“It was lovely to have somebody like a best friend that I could fully trust and could phone whenever I wanted or needed to. I wanted to be strong in front of Julian’s friends, work colleagues and especially his daughters so having a sounding board; safe people to talk to about the negative and concerns was invaluable.”
Reflecting on the support Sally received from Reframe she wouldn’t hesitate to recommend the service to anyone affected directly or indirectly by cancer.
“I would always recommend Reframe to anybody that's sadly diagnosed, to seek support from Reframe because you just don't realise how much you need it and especially if you're on your own. I don't know how you would do it on your own without help.”
The worries Sally felt about the eventualities and ‘what if’s, were alleviated through the support that Lorraine and Rebecca provided.
“You're not sleeping because you're worried about all the eventualities and what if this? What if that? What if it goes wrong? You can't help it. Because all day every day, you're hearing negative opinions and thoughts from everybody else, it doesn't help. People don't realise they're actually making it 10 times worse. It's an exhausting process; I just didn't realise how exhausting it would be for me. Personally, I think everybody being negative is such a downward spiral in itself.”
“[The Reframe team] is almost like having another Mum, there for everything. They pick you up, they are there to support and organise you, to counsel you, to make you feel better. They are just literally like another arm. You know you just need them. You genuinely do need them, like a Mum… You're having a bad day and then you go Mum just help me, like in tears, just help me and they make you dinner and make you feel better and will organise everything for you. That's like Reframe, they're just there for everything that you need.”