This last couple of days have been very long and full of so much. Yet, I continue to move on. I have been making a lot of phone calls regarding more support and for me to be able to receive a little more pallitive care. That has been something that has been neglected since the time I was diagnosed. What is palliative care? This is an aspect that all cancer patients must have. Certainly, all persons should have this type of care with respect to any difficult and life changing diagnosis. This is the type of care that is considered holistic and makes care more complete. Since my diagnosis, I have not received any care of the sort. I have been forced to be my everything--physician, heal thyself. This has been something that I have begged for and have not received. I look forward to receiving more care. Something I would love--a massage. Yes, that would be awesome and would help to relax my being; however, I have learned to relax and to identify the areas of my life that need that attention. I have been practicing more exercising and working on my dojo. This has been quite a saviour to me.
I have been wanting to have a dietician. I have learned quite a bit about the meals that I am to eat and to understand what is acceptable and not. During chemo, I learned to eat slowly and not impetuously. Learning to eat foods that my body would handle was so important. Having mouth ulcers made a huge difference. I was sure to drink a lot more water and to continue with my multivitamins and my supplements. I was told that drinking Ovalitine was an incredible help to me and it was one aspect that ensured my health while I was going through the ordeal. When I had met my radiology oncologist, I was told that it was an excellent form of plasma. She was very pleased to hear that I was doing so well and that my numbers were excellent. Excellent nutrition is one aspect of palliative care that was not established from the beginning for me.
Learning what to eat matters significantly. Certainly, eating is so important. Being able to stomach the food is another. Eating slowly and chewing food thoroughly is important. As chemo effects the brain, the response center of the brain that registers how hungry you are changes. Too, chemo can make a person nauseous and can complicate the ability to eat. I was told that some handle it well and others do not. Sure, that makes a lot of sense. I was able to handle it very well. But! I was careful about what I ate, when I ate and how much I ate. Too, taking stomach aids made a vast difference. When my chemo changed, I had to get a stomach aid for the stronger infusion. But! It worked. I drank a lot of water and was very certain to keep a close eye on my output. I watched my uruinary output carefully and paid close attention to the color and odor. I know, what a thing that needed to be watched. But, as my kidneys and liver filtered my body, the chemo was certain to create an irritation to them. I remember that I had finally opened up a Hard Mikes and drank it slowly and carefully. This was my celebration from chemo. I was very careful not to drink the whole thing at one time. I do have to say that it was utterly delicious. Then several months later, I had had a beer. This did not go down very well. my kidneys hurt something terrible and I had been in a whole lot of pain. I have not had a beer since. I am looking forward to a small glass of wine. I was told that wine might be easier on my kidneys. But, I am looking forward to another Hard Mikes. This will work and hopefully will be more satisfying. This will be another celebration from the things that I have been enduring. Another aspect of palliative care--permit yourself a small indulgence.
Exercise. This cannot be emphasized enough. While it is so difficult some days to keep moving forward, exercise seems like the last thing on the list. It must be added. I was able to get some exercise and to complete dojo. I did my stretches and my low and high impact workouts. Although I was in a lot of pain and discomfort from the chemo infusion, I pushed forward. Then I would begin to feel better. The wonderful thing about exercising is that the body does respond to the pain receptors and the stimulus of additional activity. Activity is important to mental and spiritual health as well. When we are beginning to move around, we do feel better about ourselves and the perspective of our predicament and situations changes. No, it is not fun having to go through chemo. However, it is fun to watch others as they look on and cannot understand how it is that you are functioning better than what you were supposed to.
Be kind to yourself. Allow and permit yourself to have whatever a day you want. Then go from there. While the emotional ups and downs are going to come, allow them. They cannot be prevented. The chemo induces menopause in women and the whole aspect of changes and control are out the window. Your paradigm is changed forever. What was such an incredible help to me was my faith. Despite it all, my faith was what has carried me through. I prayed. I listened to music. During the nightmares, I would ask for prayer and believed that I received them and was put at ease that my plight was not just for nothing. I believe in the power of prayer. I believe that when we pray our prayers are heard and we have favor with the LORD. Continue to pray.
I listened to a lot of music. I love to listen to harder music/rock/grunge. But! Doing it the Christian style. Yes, I love contemporary as well. I listened to it all. The harder the days, the harder the music. Did I ever love it!!! Yes, I did!!! It was so helpful when I was able to listen and unwind--I did a lot of crying, laughing and listening. I would have loved to be able to get to a concert during that time, but chemo had changed me in ways that I had not expected. Too, when we are in chemo, we are told that we are more apt to become sick from the common cold. I was never a germaphobe before, but during chemo, I became one. Because our immune system is changed, we are more susceptible to germs/viruses that could make us sick. Being in large crowds would not be ok. But! we can certainly have nothing less than a home entertainment center in our own homes. It would be good to have that little added benefit from whatever cable/internet carrier you have to be able to experience a little more fun with the care. Palliative care and the arts!!! that is something that cannot be refuted.
Palliative care! There is so much more to that than what is initially expected. If there is any doubt, be sure to ask about it when you see your oncologist or your regular doc. That is so quintessential to your overall care.
Pushing on. Looking on. Caring on.
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