“If people like me don’t do something, the system isn’t going to get any better.”
Many people who seek cancer care hit barriers at every turn. Data from the Bladder Cancer Patient Experiences survey shows that bladder cancer patients are not receiving the support that should be offered at the hospital.
Unfortunately, Christine’s experience only solidifies this.
Christine, 67, at the time, had been having pain in her stomach and a suspected tummy bug.
She went to her GP for a check-up and was asked for blood and urine tests- just to be safe.
When they returned, she was told they had found a lot of blood in the urine and that it needed to be checked at the hospital.
A few weeks later, she was asked to go for a cystoscopy and told she had grade 2 non-muscle invasive bladder cancer. Soon after, she was booked in to have her tumour removed; all had gone smoothly until then.
Sitting in the discharge ward after her operation, she asked if she could be signposted to someone to ask some questions about her recovery and if she needed to look out for anything worrying.
“We have no one who can answer these questions,” she was told.
Christine says her experience only got worse from then. She was receiving incorrect information, told she would need operations that she didn’t, and felt lost.
She is now determined to support Fight Bladder Cancer and advocate for the proper support for bladder cancer patients.
“If people like me don’t do something, the system isn’t going to get any better.”
Since finding Fight Bladder Cancer, Christine has been overwhelmed by the fantastic support of charity.
She has found a bladder buddy through our buddy service and is a member of our forum.
“It makes such a difference,” she says. “It is like having a security blanket; you might not need them, but they are there if you do. You can ask others for advice if you are concerned about anything to do with your bladder cancer journey.”
We asked Christine what advice she would give patients in a similar situation.
“You must ask questions. Be pushy, not aggressive. Always ask for clarification and more information if you are not happy with what you are being told.”
It is imperative to consider the experiences of bladder cancer patients.
Bladder cancer patients must be signposted to the appropriate support once they enter the patient pathway, especially as soon as possible after a diagnosis. Support services should be explicitly tailored to bladder cancer patients, not urological cancers.
We are always advocating for a better patient experience.
If you would like more information on our support services, click here.