There are two words that are often associated with advanced cancer – ‘palliative’ and ‘hospice’. I have dreaded hearing those two words used in reference to me since I got my initial diagnosis in 2010. I’m not sure what exactly it is about the words that scare me. Maybe it’s because I subconsciously associated them with end of life or maybe because I think they depict a picture of someone who has lost the battle to this disease and was just living the rest of their life in as much comfort as drugs etc. can provide. I know my perception of the words are probably inaccurate but I prayed and hoped neither of the words would be used in the same sentence as me.
Well, that changed on November 4th 2015! During the insertion of the chest tube, the respiratory kept making references to the home care nurses that would come to the house on a frequency to be determined. After the procedure, I was told to wait at the reception for a nurse to discuss the plan for the home visits. Nothing could have prepared me for the conversation we had.
Most of the conversation went okay until she mentioned the word ‘palliative’ and gave me a pamphlet that included the contact details for the nurses that would be coming to the house. I opened the pamphlet as soon as she left and the following words stared back at me:
“What is Palliative Care?
Palliative care is provided to people of all ages at home and in other care settings who:
- Have been diagnosed with a life-limiting, progressive and incurable disease
- Are expected to pass away in days, weeks or months, or sometimes within a few years
- Are receiving care focused mainly on comfort and quality of life, but may also be pursuing life-prolonging treatment. “
That was as far as I could go before the tears started rolling down my face. I could decide which of the three categories above I fell into. DH did his best to assure me it wasn’t all doom and gloom and that palliative care are great for pain management and symptom relief. Sadly, none of his comforting words helped as I remained inconsolable.
I have heard that word a hundred times since then. When I was on admission at the hospital, my pain was managed by a team of palliative care doctors. They even tried to convince me to move to the palliative ward but I politely declined.
Upon discharge, I had a palliative nurse come to the house to get me formally registered as a palliative patient. I had to answer questions about end of life that I have never given much consideration for. “Would I want CPR performed on me? Would I want to be fed via a tube if I couldn’t swallow? Do I have a will?” etc. were some of the difficult questions I had to answer.
By the time she left, I was physically, mentally and emotionally exhausted. I could not believe this was now my life. It didn’t matter how well I thought I am, to the world, I am just a stage IV cancer patient and that realization hurt.
I was in bed feeling miserable and sorry for myself after the Saturday appointment when my cousin and cousin-in-law burst into the room! They knew I had experienced a rough few days and they dropped everything to be by my side. I was overwhelmed by the show of love and I will never forget the sacrifice of love they made.
The last few days has shown DH and I how incredibly blessed we are to be surrounded by such great friends and family. I can’t tell you how many of our friends stopped by to visit me at the hospital. They came bearing gifts of flowers, magazines, food, snacks etc. I had a friend pick up grocery a few times for the house and for my lil one. I had a couple of friends take my mum and my lil one to a birthday party she had been invited to. I had friends and family who couldn’t be here call and message me every singe day to see how I was doing.
To be honest, the last few days have been pretty miserable and there are times when I didn’t have a lot of strength in me to go on. In those times, I have drawn strength from God, my husband, our friends and family and I have to say, it is their love and support that is keeping me strong.
With a very humble heart, I say thank you to everyone of you ❤