I have become that repeat patient. They know me all too well on the general surgery unit. I always felt that once patients start coming in more frequently that was the beginning of the end. Which could be true but we just don't know, I could have a month or I could have significantly longer.
I've discussed with my family and realistically when it comes time I will go quickly. Because of an iliostomy that is high output (empties about 4 litres a day) I'm kept alive on a daily basis because of 3 litres of IV food (TPN) and about 1-2 litres of other IV fluids. When I become too weak to maintain these consistently by myself I have decided that it will be time to stop these infusions. That means very quick dehydration when you consider how many IV fluids I get in a day. This may sound like a terrible end to many of you but if you have seen the long drawn out tortured (for patient and family) end for many cancer patients fairly quick decompesating may be a blessing. I have always been of the opinion that quality of life should definitely outway quantity. The hard part is as you go along day by day in life and become more into survival mode you can only see the step or two in front of you and occasionally loose focus on the bigger picture. I need to be sure to keep that picture for myself and my family clear.
As far as quality of life goes I actually feel quite good right right. And that has everything to do with my family and friends helping me on a daily basis make my projects and dreams for the day become a reality. They do the tedious, tiring parts of projects and I step in for the fun parts. If I had to look after the tedious parts there is no way I would have energy for the fun parts and in turn no energy for fun and joys and in turn a poor quality of life.
Palliative cares involvement in my case has being amazing. Some people are scared off by even just talking about palliative care. My case their involvement has drastically altered my quality of life. I am on a continuous pain medication patch and 4 different medication injections multiple times throughout a day. They control abdominal cramping and pain quite well. I didn't realize how much pain I was in until after I started on these medications. Chronic pain fogs the mind and you can't think, problem solve and look into the future because you mind is so focused of survival of making it through that moment. Palliative care has given me the gift of pain management and this has released my brain to be able to think about other things and other people a little bit more as well. Knitting, handling occasional listening to music, handling having a small crowd of people around or doibg light easy yoga are all things that a couple of months ago were draining to the extreme. They are still draining but at least I can process in my mind that they are and I can pace out my day to be able to do some of these joys in life again.
I'm living a higher quality of life solely because of the willingness, helpfulness and understanding of those around me. For this they will never truly know and understand the gift they have given me. Thank you is not a strong enough word, but THANK YOU!!!