I thought I’d share another story from one of the interviews I conducted with people using medicines to manage a pre-existing chronic condition throughout cancer diagnosis and treatment. As always, using a pseudonym - this time Maria.
This story highlights some of the issues that arise during transitions of care, when people fall through the gaps and aren’t able to self-advocate when something isn’t going right.
Do you think there’s anything we could do to prevent this kind of situation happening again? Share your perspective by replying below
Maria was in her 80s and lived independently at home alone, and had done for quite some time. She was born in Austria the midst of World War II, immigrating to Australia in the sixties where she raised a family and worked hard throughout her life. She had extensive medical history including ischaemic heart disease (prescribed perhexiline, verapamil, ISMN, GTN, assasantin), arthritis resulting in multiple hip replacements and leading to her experiencing multiple PEs for which she was taking lifelong apixaban.
Maria found out she had cancer when a routine blood test showed that she was severely anaemic and her GP called her requesting that she go into hospital for an urgent blood transfusion. Being of Jehovah’s witness faith, this was not an option for her. As such it took some time to get Maria in a position where she would be fit for surgery to manage what was found to be colorectal cancer.
Six weeks later Maria was admitted to hospital for her surgery. She stopped her medicines prior to surgery as instructed, went in for a pre-operative iron transfusion and stayed for ten days, discharged on a Friday night with community nursing support to administer her enoxaparin injections. On Sunday morning she was back at the hospital suffering from a major haemorrhage.
I was haemorrhaging that bad that I kept fainting all the time.
They gave Maria a 50/50 chance of surviving her emergency operation, and as predicted it was not an easy time. She had an extended stay in ICU, not eating for five weeks and losing about 18kg. Maria also ended up with a colostomy bag. After some time, Maria was able to be discharged home, again with community nursing support to administer her enoxaparin injections and care for her wound.
At home, Maria continued to have pain and discomfort relating to her wound which was not healing.
Oh it was painful. And the smell it was absolutely, like rotten meat…I couldn’t even go out. Because constantly was tied down in bed or in the house because as I said, nurse came twice a day and they had to redo the bandage each time
Maria continued to have in home nursing care for around three months, first from the hospital nurses and then through a private provider. Around three months of enduring a wound that was not healing, and having painful enoxaparin injections administered into her tender abdomen. She didn’t have contact with her GP throughout this time.
Eventually, Maria attended a routine appointment with her cardiologist where she was able to find some assistance. She changed Maria back to her oral apixaban and followed up her wound care with the hospital.
my cardiologist, she found out. She said to me how are you and I said the wound hasn’t healed and we were talking, so she went on the phone and she said why, what did you have and I said I don’t know, it’s about two or three months after and I was still oozing. Then they open it up a little bit and they fill it up with stuff
She rang the lab, whatever you call it. And she said I want all the detail for Maria. She has this open wound and blah blah blah. And then they told her. No doctor told me at [the hospital]. She told me. She really went to town with them. See they should have told me because I didn’t know anything about golden staph.
By the time I spoke with Maria her wound had healed and she had moved on to a new medical problem of experiencing recurrent bowel obstructions…but that’s another story.