Louis is battling cancer. For more than two years in fact. When he was first diagnosed with liver cancer there was every reason to hope. The outlook was good and in theory, there was no reason why he wouldn’t beat it.
Over time though, Louis and his family realized he was not going to beat it and in fact at some time, hopefully, in the long distant future, it will beat him. Louis is in his seventies and realistically there is no chance of a liver transplant, and even if there were, who would disagree that someone who had decades ahead of them should be higher on the list.
This is when the words “palliative care” were mentioned. Louis remembers thinking “this is it! I am going to die.” Once the shock had subsided, and the family and Louis were able to get their collective heads around what was really happening rather than the fear of the words, they began to realize there was a team mobilizing around them to help Louis live, not to help Louis die.
Palliative care is about the quality of life
“I was used to the idea that life had changed”, Louis added, “I had been in and out of the hospital and dealing with chemo for a couple of years, so I had adjusted to the idea of not being well any more. What I didn’t understand is there’s so much more to palliative care than managing pain”.
Pain management does come under the palliative care umbrella, but it has a generally wider brief. “Once I had worked out that this was about enabling me rather than disabling me, it made sense. We were planning the support my family and I needed to support us as we made our way through what was coming next.”
Support services depending on what the patient needs and wants
The first step was pulling together the team. Louis and his family were both on the team but their views were always requested and considered too. The next key member on the team was Louis’ oncologist and health team. Adjusting to changing medical needs is key to the patient’s long-term well-being.
The next step was working out the support services needed. Shopping and cooking was something that Louis felt he could cope with at least under the new normal. But the range of support and help available was broad and deep.
As Louis commented “Palliative care helps you deal with the obvious, but it goes so much further than that. There is emotional and psychological support too. There is practical help available, there is even spiritual counseling if wanted”.
Louis’ take on palliative care
Louis pointed out “the difficulty with chronic illness is that you know nothing and ‘they’ know everything. Palliative care gives you the tools and the knowledge to give you back control of your own situation and to take help where you need or want it. For me, it was heaven sent!”