06
Mar
2017
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Louise's bowel cancer story (Mother diagnosed at 76, NSW)

Last year my Mum lost her appetite, lost weight, and began to get extreme pain in her stomach after eating.

We used to meet every Saturday for coffee and the changes were very worrying to me.
 
She had an ultrasound after experiencing constipation due to a tummy bug she’d picked up while travelling.
 
She mentioned nothing to me until mid August, and I pestered her to go and have a colonoscopy.
 
At the end of September we got our first surprise. There were three bowel cancers and one was going to obstruct her bowel and needed urgent surgery.
 
Here was my healthy Mum, who still worked for herself and went skiing overseas every February, now facing a very serious battle for her health.
 
Mum asked me to see the doctor with her after the follow up scan, and I was not sure how I would be able to stay strong if she was told the cancer was terminal.
 
I researched how to be a support person, wrote down questions to ask in a little book, and went along to just listen and write down everything the doctor said and ask questions at the end if needed. I checked with Mum first to confirm this plan was ok with her and off we went.
 
She was so brave but also shocked when told she could not be cured. I just kept writing. I had expected this to be the case given how much she had been changing.
 
The surgeon was excellent and placed a stent in the colon through the middle of the cancer to stop an obstruction.
 
On 3 occasions she nearly was going to theatre for a stoma, but luckily the stent began to work. Now she eats a very low fibre diet to prevent the stent from blocking.
 
Then it was off to see the chemo specialist and that awful journey began.
 
It has been very difficult to get information on how to get support for my Mum, who I now have to help shower. She cannot shop, cook, or walk far and gets frustrated with her loss of independence.
 
I wish there was a booklet with information on who to contact and what the My Aged Care site can do in terms of organising an aged care assessment which links to support services.
 
Alas, the hospital social worker told my mum there were no services to help her. Mum told me that the palliative care doctor and nurse visited her but did not explain their service. Instead, they told mum they could not help her until she 'was nearly dead'.
 
Luckily I ran into a government employee at a Christmas Eve party who told me about the aged care assessment. So my second big surprise was how difficult it was to navigate support services.
 
I was fortunate to find Bowel Cancer Australia on Facebook, and have been nicely surprised by the amazing support I have been given already by their workers.
 
I suddenly feel I have people to talk to who know how to help and understand what is going on. The nutritionist rang and helped Mum and I’ve planned some things she may tolerate eating, that could prevent her losing so much weight. She has already lost 20 kg.
 
I have been surprised by how fragile my Mum has become; how much pain she is able to cope with; and how calm and brave she is.
 
This is the most challenging time, but I have been given the great honour of taking this journey alongside my gorgeous Mum.