|Alison's story (46, QLD)|
This story is about my mum’s ordeal with bowel cancer.
She was diagnosed in 2005 at the age of 73, but her diagnosis had taken some time. Her rectal bleeding was initially thought to be haemorrhoids, and the GP gave her a cream to treat the condition, but the bleeding persisted and, when she finally had a colonoscopy two months later, they found advanced bowel cancer.
Within the following two weeks, mum had surgery and fortunately didn’t need the stoma the colorectal surgeon had anticipated.
Four months after surgery, she had a CT scan, which showed tumours in her lungs. A cardio-thoracic specialist decided she needed an operation to remove part of one lung. Recuperation after this surgery was particularly hard for mum. We quickly realised we weren’t really very well informed about what the procedure involved and the after-effects mum would experience. Pain control became a real issue when she reacted badly to the pain medication a local GP prescribed. Looking back now, mum didn’t deal with any of this very well.
Mum began her first course of weekly chemotherapy in late 2005 to treat the remaining lung tumours. While all this was going on, mum continued to receive monthly treatments for multiple myeloma, which was originally diagnosed about 2000. Although she was given a number of breaks from the 5-FU (which made her very nauseous and tired) particularly after any surgery or infections, I don’t think mum was ever given choices about her treatments. We all wanted to fight it, so we just went along with anything the doctors thought best. And things just kept getting worse.
In late 2006, we were told mum had a number of small tumours in her liver. In early 2007, a radiologist administered S.I.R.T. (selective internal radiation therapy) to treat these. After this, mum started to feel really knocked around. A couple of months after the S.I.R.T., she was found to have blood clots in her lung and legs (apparently common with cancer patients) so they prescribed Warfarin to maintain a particular INR level (which indicates the blood’s clotting ability). However, we learnt the hard way that that is particularly difficult to achieve while on chemo and when the liver is not functioning normally. Therefore, the Warfarin led to a bleed in the brain. Mum had been having severe headaches for weeks but, by the time they found the haemorrhage, there was so much pooled blood that it needed to be drained.
Eventually, mum was referred to a younger oncologist who finally gave her some choice over her future treatment; mum chose not to re-commence any chemo because she just couldn’t take any more. Her condition went rapidly downhill and, within two months, mum passed away. It happened so quickly.
The entire experience from start to finish was emotionally draining. My husband and I wanted to make sure mum was being dealt with properly and receiving the best available treatment and that all her options were being considered. Dad passed away in 2003 so, as an only child, I relied heavily on my husband and, in the latter stages, on mum’s youngest sister. Keeping on top of mum’s treatment program and appointments, and trying to fully understand exactly what was happening to her via test results was quite demanding, yet it was so important to us all.
I found that supporting a loved one through cancer can be a very isolating experience. Friends and work colleagues don’t really understand unless they've been through it too, and everybody copes differently. If there was one key message I could pass on to someone else going through this, it would be this: make sure you and the patient understand everything that is going on. Information provides power, so ask as many questions, and do as much research, as you can.
Provided your loved one is fully informed about what is happening to them, and about the options they have, respect their right to choose their future treatment option – they are the only one who can judge how much “fight” they have in reserve. It can be difficult to completely comprehend everything you’re told but you need to try. Be strong. You can have a good cry when you’re away from them, but be their rock of support when you are with them.