I've been thinking of writing this blog post since the end of August! I realize I've lost most of my readers by now, but I would still like to share the "after cancer" life. Many who stop by here have cancer, and I feel it might be helpful for them to know what life might be like after treatment is over. Also, it's important to me to let others, who haven't experienced cancer, know what life can be like.
How many of you thought that if you get cancer, and it hasn't spread, that you go through some treatments that make you sick and lose your hair, and then when you are finished you go on your merry way--never to think about cancer again? Show of hands?? Mine is raised too! I think I probably realized that life might be a little different for a survivor--you know, they stop and smell the roses more, that type of thing. Let me share a bit with you what life is really like.
FOLFOX is the standard chemo regimen for colorectal cancer. It does a great job of killing cancer cells. It also kills good things--like nerves, hair follicles, toenails, the skin on the hands and feet, etc. I've heard of people losing their hearing and having heart attacks from it. If you've ever had FOLFOX, you will probably have some sort of after effects from it. 4.5 years after finishing, I still have burning, numbness, and tingling in my hands and feet. I also had AC+T chemo for breast cancer. I completely lost my hair (which is still thinner now than before), and the Taxol made my neuropathy worse. It's another nasty combo that can also cause heart trouble.
Then there is the colon surgery. If you are fortunate enough to have a tumor that is high in the colon, you may not have as many issues as a person with a low tumor. But it is still a major surgery, and your colon will work differently, and there is always the risk of strictures and blockages caused by scar tissue. People with low tumors (like mine) have all sorts of changes in their bowels. Some days they can hardly leave the bathroom, and then, without warning they can be constipated for for several days. Some can't work because the issues are so bad. Some who had a temporary stoma, that was reversed and their colon was reconnected, have asked to go back to a bag because having to constantly "go" is ruining their life. Breast cancer surgery can cause "frozen shoulder" which can last for years, and some people never regain full use of their arm/s. Some surgeries move muscle around and then those people need physical therapy, and, again, they may never be able to get back to where they were before surgery. If lymph nodes are removed that person will always be at risk for lymphedema--which is swelling in the arm. They may need special massages, phys. therapy, and wear special sleeves. Once it starts, it never goes away. Oh, and it's usually not just one surgery for breast cancer, but many, over the course of many years. Did you expect your co-worker who had breast surgery to come back to work and be able to lift and carry and do everything they did before? Well, they may need to do things differently, and may be gone a lot for therapies and surgeries--be kind to them! And pray it never happens to you!
Some people who have cancer also have to have radiation. I had it for both my colorectal cancer, and my breast cancer. For some, this is the worst of all. There are lots of internal organs that also get blasted, esp. when the cancer is in the stomach or pelvic area. There are too many problems that can happen to even list here. Some are scar tissue build-up, colon and bladder scar tissue and bleeding, skin that never heals or is always easily irritated, weakening of structures that can lead to fistulas, hernias, and ruptures, and on and on. Other than tightening of the skin on my chest and armpit, I have not had too many side effects of the rads I had for breast cancer. It most likely caused some scarring on my heart and lungs, but hopefully I will never notice that. It also increased my risk for skin cancer and lung cancer--it is radiation after all! Both chemo and rads increase risk for cancer in the future.
Ok, those are only some things that can happen to colorectal and breast cancer survivors--there are many other types of cancer, each with their own set of problems. If you read all that, I want to thank you. You are a person who cares about others and wants to be aware of what people with cancer go through. Expecting your friend, co-worker, or loved one to be back to "normal" after their cancer is gone is not helpful. Ask them how they are doing, what side effects they still have, what help they may still need. I have a friend that just finished a long and difficult treatment for stage 4 colorectal cancer, and she is getting a break, but no one knows for how long. Her family has been pressuring her to go back to work, and they don't want to hear about any of her problems--she was even told she was making stuff up while she was still getting chemo!! I can't imagine! I'm sooooo very thankful for my family. They know I still have some difficult days, and sometimes I need to miss an event (which when I do I usually end up in tears because I'm sad and frustrated I have to stay home!). Thankfully, those days are getting fewer. 5.5 years out from my colon resection things are still slowly improving. I'm STILL learning what I can and can't eat, although sometimes there is just no rhyme or reason to it! Overall, I am doing better, and even my fatigue is better and I'm not completely exhausted every day after work.
Today is a "bad tummy" day, which causes me a lot of pain (you know, all those radiated areas!), and I came home from work and took a pain pill. (Which is why I have time to sit and write this--I can't do much else right now!) I hurt so bad that I wasn't going to suffer one more minute! Taking a pain pill is very rare--I took a 1/2 a pill about 2-3 weeks ago, and before that it had been about 6 weeks since I needed one. I had another surgery on my backside in Aug, and will need another one soon. Repairing things "back there" is tricky. One wrong cut could leave me needing diapers or a colostomy (bag) for the rest of my life. Also, radiated skin doesn't heal very well, so I could end up with a gaping wound that takes months and months to heal.
I had acupuncture this summer for neuropathy, and it helped a bit, but I think I'll save that for another post. I also need to tell you about my trip to Florida with my "Pearls" (breast cancer sisters!)! There are some blessings that came out of my cancer journey, and they are a huge blessing to me!
So, that gives me a few reasons to update again soon! If anyone with cancer comes across this blog, and wants to talk more, my e-mail address is nuttyoaks at gmail dot com. I have some great resources I can share with you, and am always willing to share my experiences and help you through your treatment!
God bless you all! Look for another update soon!