It gets harder for us when they get better. You don’t choose to become a caregiver, it just happens. The hardest thing is to find the balance in between the good times and the bad. Finding your place.
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Your eyes, ears and voice are so important to ensure that the patient is getting the best care and support available, both in a medical facility and at home. Patience and communication are critical as well.
Words flew by (some said, some read): Grade IV; aggressive; deadly; median survival of 16 months; surgery; advanced care planning; end-of-life; power of attorney; radiotherapy; chemotherapy; clinical trial...
Explaining what it was like to go through a cancer journey and living as a survivor with permanent treatment complications is lost on most people, including family. The only people who truly understand what it’s like are other cancer patients who have been through similar experiences
Grandpa passed away in a hospital palliative care bed. He left us in the middle of the night. None of us were by his side. Grandpa was like that – independent, private and reserved. I think he wanted it this way.
But most importantly, spend time. Time is the overarching theme in my words for a reason. We aren’t all doctors, we aren’t all healers, but the one thing we all have in common, is that we have the powerful ability to love.
I always say that palliative Care picked me. I lost my Dad to cancer 27 years ago after a very short 5 weeks of illness because he was so full of cancer. It was everywhere, he was 49 years old.
Once my mom knew her cancer was incurable, she accepted her fate and this allowed her to say goodbye on her terms. With acceptance, she was able to savour some last experiences, and to prepare my dad for the months ahead.
I am a very positive person by nature, so I believed what he said and looked at this as a blip on my radar. I would do what was necessary and get this behind me. What I didn’t know was that although the lump was small, I was HER2 positive, the cancer had already spread to my lymph nodes and I was going to need rounds of chemotherapy and then a year of Herceptin treatments intravenously.
What I can only describe as being sucked into a very fast moving tornado has changed my life forever. I was scared, I was confused and I was terrified that I had passed down a genetic disorder to my kids. In the span of a 1.5 months I had two colonoscopies, a CT scan, biopsies and I even had the inside of my colon tattooed for removal.
The fax got lost. It took way too long for us to track down what happened and then to finally get an appointment. I believe hospitals and doctors still use faxes - this is really outmoded technology and should no longer be used, in my opinion.
Over the course of a weekend, my father’s infection became very serious and he was admitted to hospital. Once in the hospital the doctors were so busy trying to say that his rapid decline was not a result of the care he had received in hospital, that I as a caregiver ended up having to claw for every single answer to all questions.
My dad was a grumpy bear, who was always happiest being out in the forest amongst the trees than in the concrete jungle. He died of a brain aneurysm; one second he was on this earth, the next he was gone. There was no chance to say our goodbyes the way you see in movies. .
We didn't know what to expect or what to do next, how long he would have to live and if his cancer was curable? Once my dad stabilized and was able to go home, we were sent to see if surgery was an option and within days we found out that it was not.
My mother died from breast cancer after living with it for four long years. It felt like my family and extended family experienced the highs and lows of having cancer too because we were with her for every single appointment along the illness journey
My mom’s wishes were to stay at home as long as possible. We had a great team of people to care for my mom and make sure she was most comfortable. Her cancer eventually spread to her lungs and liver.
After only a few weeks on the palliative care team, I needed more help for personal care. I even paid out of pocket for an extra hour a day – only to find out later that the number of hrs we had been receiving could have been doubled. I found this out days before Geoff died, and was never able to increase the hours.
Of course there came a time when in fact there was nothing left in the cupboard, but a referral to a drug trial gave the team that was looking after Fred a convenient way to claim that there was, which meant that everyone could still avoid talking about the obvious.
In the spring of her last year, Suzanne’s most optimistic ambitions – which seemed unrealistic to me at the time -- became to see our son’s high school graduation in June, spend time at the cottage in the summer, and have our wedding anniversary dinner in September.