Don't allow anyone to make you doubt decisions you made in the past, or decisions you feel strongly about right now. This is your body, your life and you are the only one who knows from the inside out, what feels right for you. You can only follow your heart. If something that is suggested to you doesn't sit well, say so.
I come from a long line of strong believers in God, so leaning on my faith I decided I was going to summon the lion inside me...fighting off negativity and any feeling of despair. Your faith in a benevolent power or system is critical to your recovery. That and an unwavering trust that you will get better, and that all passes. Remaining cheerful and upbeat may sound ridiculous, but it can be done. Surrounding yourself with positive people, happy music and laughter is a HUGE step to recovery!
I chose not to join a support group. For me it meant ‘classifying’ myself as someone who was now this other thing. I saw this as ‘me' going through a transformation on many levels, not an 'illness'. I didn't want to give my mind the chance to believe that my condition was anything more than a temporary, albeit difficult, learning process. My decision was also impacted by the fact that I had a good support system. Either my boyfriend or my doctor friend went to practically every appointment I made. My boyfriend drove me to each Chemo treatment. We played Yahtzee or cards, giggled a lot and sometimes just read together during the 3 hour sessions. My nieces took turns cooking meals for me according to my diet. And if I needed to ask a question or vent, my doctor friend was there, day or night.
The people around me are all positive people. I would advise anyone going through treatment to avoid any worry-wart friends, negative friends for the time being. You want to surround yourself with a happy, light environment. Your faith in your recovery will help those around you behave the same way.
Admittedly, for some people going to a support group is necessary, especially if they don't have a strong social network and someone who can be there every day. I did enjoy participating in a drumming class offered through the hospital, and yoga classes are very helpful.
Before each chemo session I was advised to have a massage so my body would feel relaxed and ready, and a few days after each treatment I went to my acupuncturist to help with side effects, moving toxins out of my body, and supporting my organs.
If you do choose traditional treatment prepare to go through a roller-coaster of feelings as physical and psychological side effects emerge. You'll have to learn to be detached from the way you look and the way you used to perceive yourself. Losing weight, losing your hair, eyebrows and lashes can be quite a shock. If you decide to have a mastectomy, that's another physical-emotional-psychological adjustment to make.
But you know, it's all 'stuff'. I mean it's just surface stuff. I didn't want to look in the mirror after my daughter helped me shave my head. But she and I both have a ready sense of humor, and she said I looked great and we cracked jokes. I called my self Telly Savalas (remember him?.. Who loves you baby?)
She and I went shopping for a wig, and had fun trying crazy ones on. I discovered and bought eyebrow tattoos that worked well too. And I usually wear eye-makeup, so I lined my lids when my lashes flew away, and always dotted blush on my cheeks so I looked good for my son. I tried very hard to act normal, and not make him feel his mom was 'ill'.
Do what you need to to feel good. Walking most days helped me keep up my energy as did the Super Supplements suggested by my Nutritional Oncologist. I never had a lot of fatigue, and with medication and the right spices and foods, had no trouble with nausea.
The surgeon put the port in my right arm for infusions, and a month and a half later I developed blood clots. I called the Oncologist's office but the receptionist said she can only put me through to the Triage line, it's always a recording so I left a message. This was Monday. They promise a 48 hour call back at the most, but I felt this was urgent. I called the next day and asked to speak with my Doctor but she was out of town. I explained my problem and they put me through to Triage again! I left another message. By Wednesday I wasn't waiting, I spoke with my primary care physician who sent me for an Ultrasound. There were 2 small clots in peripheral arteries, so he put me on Coumadin.
The following Monday my Oncologist called me as a followup, and I told her how dismayed I was at their office procedure and lack of responsiveness. She said she noticed some note in the system and someone dropped the ball, and she would be 'looking in to it'... no apology... and went on to ask how I was feeling. Ugh.
During the second month of treatment, I started feeling a weight on my chest when I lay down, and would start coughing. After 3 days I told the Oncologist. She ordered an MRI of my lungs, and it showed a a few spots and fluid in the lower right lung, and a small amount in the left one. Three weeks prior I had brought a kitten home from the pet store. For some reason I wanted a kitten. This is very curious because 1) I am super meticulous about cat hair in the house, 2) don't like having a litter box indoors, and 3) we already had my daughter's cat living with us and 3 cats outdoors!
Anyway, I thought that perhaps I was allergic to her hair. The Oncologist called to say we need to extract and test fluid from my lung to see what it was, but that she would 'bet money the spots were cancer'. She started to talk about finding a clinical trial for me to join, not even stopping to ask or to think the effect her words were having on me!
You can imagine my utter shock! I didn't believe it was cancer, my intuitive hit was that it was a virus or something like that; and why was she jumping to conclusions before we had any definitive answer? When she made that awful statement, I immediately thought, "You just lost your money, lady." But she unhinged me for about 24 hours. I couldn't believe that things were so dire. I had a hard time recapturing my optimism, but I the next day it was back.
I went to my appointment for the fluid extraction, but because my blood was too thin I was sent home. They told me to get off Coumadin and test my blood again in 2 days. So I went home and waited for the Oncology office to tell me when to get tested again. During this time I decided I was going to heal my lungs. Many times during the day I visualized a golden, divine rainfall penetrating my body and bathing my lungs with its healing light. I breathed deeply and meditated on this feeling of healing.
Three days went by and my Oncologist did not call. I couldn't wait around any longer, so since I had a standing order for INR blood tests, I took myself to the lab. The results were in the safe range, so I called the hospital and renewed my appointment. The doctor did a sonogram and said there was now too little fluid to extract, so he sent me home. He called my oncologist. She called me the next day and said to go back to the hospital because the head doctor in that department said he could do the extraction!
So once again I went to the hospital, checked in and was taken to the appropriate floor. The nurse prepped me, and when the doctor came in he asked why I came back! He apologized and said he called the Oncologist an hour ago and told her it was not possible to do an extraction despite what the person she talked to the day before said. I was bummed because my doc didn't call to save me the trip. The hospital sent me an apology note and a free Starbucks coffee card although it wasn't their fault.
Well, finally I had a PET CT done, and by then the spots were gone and the fluid vanished! I thanked God for His grace and intervention. My meditation worked. It took positive thinking, visualization and faith that my body can heal itself.
I hope the Oncologist learned not to jump the gun and spread negativity, and put her patients through stress and worry. Unfortunately a friend of mine who saw her recently had a similar experience with the same doctor. She gave her a treatment recommendation over the phone based on her 'recollection' of my friend's situation. It turned out to be the wrong one.
t's imperative that we self-advocate. There are many competent and skilled Oncologists, but some have a large ego and weak personal skills. If you're dealing with cancer, your Doctor's demeanor and knowledge are things you need to be comfortable with.
...more later. ♥