Stress levels for many carers are as high as the patients
WHILE it is constantly drummed into carers that they need to look after themselves, an Ipswich mum admits it is hard.
Anne Wright cares for her daughter Maggie, who is six years of age and has graft-versus-host disease, also known a GVHD, which is a complication that can occur following a stem cell or bone marrow transplant where new cells start attacking the older blood cells.
Maggie was diagnosed with leukaemia only hours after she was born and immediately started undergoing chemotherapy. She then had a stem cell transplant when she was only three months old.
For the following six years she was in remission but in the last few months the family has had a set back with the GVHD diagnosis.
"It's quite a step back and it's going to be a long process but hopefully we can go through that," Ms Wright said.
Maggie is on medication for GVHD, which has a range of side effects including fatigue and being prone to pick up illnessess and infections easily.
Some medication also gives her a puffier face and causes facial hair.
"We try to keep her as healthy as we possibly can," Ms Wright said.
Queensland Cancer Council research shows some carers of cancer patients have higher levels of stress than the people they care for.
Ms Wright said her role as a carer meant she had to be very watchful of Maggie's lifestyle and condition.
"Your life revolves around caring for her and being available for her," she said.
"Whilst everyone says it's so important to look after yourself, it's all well and good but at the end of the day there is so much running around to do. I don't have time to sit back."
Ms Wright said more funding should be made available to help people to learn what they were entitled to as a carer.
"I have found so many things where I can get this and that, but nobody has told me I'm entitled to that.
"There doesn't seem to be a website. It's tricky because there are so many children with different diagnoses out there, but it's just really hard to find information."
Ms Wright said the government should also be more considerate of people with special needs.
"Yes we are a minority but we are still people and our kids deserve to have everything a 'normal' person would," she said.
"We to have rights... think about us a bit more."