Stock photo from http://www.stockvault.net
I have a very rare form of cancer called a neuroendocrine tumor. It started in my pancreas, so I am known in the medical world as a PNET. It’s actually the same kind of cancer that Steve Jobs had. Even though it tends to be slow growing, it is a devastating disease with some patients having massive symptoms throughout their illness. I have lost many friends to this disease, so it is not something to take lightly or a benign illness as many in the medical community incorrectly believe.
I was diagnosed when I was 37, relatively young for the disease and had major surgery to remove the tumor from the tail of my pancreas, a bunch of positive lymph nodes and my spleen, which had been damaged by the tumor blocking the splenic vein. Even though I was told this surgery would be curative, the disease spread to my liver in less than a year after that surgery.
Even though I was offered a liver resection early on, I resisted having surgery as my first one was so complicated and was able to manage my disease for a number of years. Six years after that initial surgery, I underwent a second surgery to remove a portion of my liver and my gallbladder. Even though my second surgery was “easier” and without complications, I still had a significant amount of pain post-surgery that lasted for far longer than my doctors or I anticipated.
Here’s a few of the things I have learned throughout my journey.
- Get moving!
The most important things you can do after surgery is to get exercise. You will hurt, it will suck, but it will get you on the road to recovery much faster. Choose a low impact sport – gentle yoga, water aerobics or walking. My personal choice is walking, as it a great way to get moving. My first walk after being released from the hospital was 40 minutes long….to go around my city block. It was slow. I took breaks. When I got home, I napped for two hours. But, it gave me such a strong sense of accomplishment. There is nothing like feeling like you can tell cancer to go eff itself. - Eat like you give a damn!
Even though you are recuperating and a bag of Chips Ahoy sounds like the perfect soul food, try to resist. I’m not saying you don’t deserve to treat yourself, but, your body will heal faster and more thoroughly if you are eating better. If you don’t have much of an appetite, healthy smoothies or juices made from veggies (and some fruit) are a great way to nourish your body, without taxing it. - Take your meds!
I’m not a fan of surgery, let alone prescription drugs, but, at some point they are necessary, even my naturopath and acupuncturist agree. Don’t be a martyr, if you need pain relief, do yourself a favor. If you have run out and still it pain, make that call to your doctor’s office and get a new script. It will give your body the extra time to rest and heal. - Keep in contact!
If you are like me, you’d rather cocoon and hide away from the world. Your friends and family are seriously concerned about you and have your best interests in mind. When they call, try to pick up the phone and talk, even if it is only for a few minutes. They will understand. When they text or email, get back to them with a quick note. If you need help with anything, and I mean anything, like maybe someone to walk with you or help you prepare food or take care of your pets, do not be afraid to ask. People will be grateful that you asked them and allowed them to help you during this time. - Be gentle with yourself!
If you are not recovering as fast as you expected, don’t beat yourself up about it. We all heal differently and some of us require more downtime. Take extra time off from work, or if you must go back, see if you can do a reduced schedule while you regain your strength. Don’t compare yourself to previous surgeries or even those of friends. Pamper yourself in a way that makes you feel great – maybe it’s a pedicure or massage. I have had wonderful Reiki and other forms of energy work during these times and have had significant shifts in energy and more importantly my emotional space.
While I sincerely hope that you will never have to experience any radical surgery, I hope that my handful of tips will help you or a loved one navigate this journey in a meaningful way.