I haven't written in awhile and explained my reasoning in a recent Facebook post but the last few days have been "inspiring" but maybe not in a good way!
I will preface what I'm about to write that I don't get mad and that I believe that people often don't know what to say...I also believe that everyone I know has the best intentions and does not mean to hurt my feelings. Unfortunately, there are things that are mildly annoying and the build-up of many peoples advice over time can and does hurt my feelings. In all honesty, this was actually inspired by a well-meaning lady at my very first support group attendance on Thursday evening. She pulled me aside to let me know that she had the answers that seemed to have escaped my many doctors and was willing to share all the things she is doing on her alkaline diet with me if I was interested. Now when friends give me advice I can take it with a grain of salt but another person whose had cancer and doesn't know me at all...well let's just say I probably left her stunned with a flat, hard, NO.
So here is my 2 cents for what it's worth to anyone that may know someone with a terminal illness or cancer:
1. Please don't give us dietary advice. If there was one sure fire way to cure cancer, we'd be doing it!!! There are so many myths about sugar and alkaline diets and I'd heard of them prior to my diagnosis but they are simply things that caught some traction and have no scientific evidence whatsoever. Diet is extremely important for us to ensure the treatment we receive helps keep our immune systems up but not a single superfood or "cancer diet" has cured anyone.
Lastly on this topic, you unintentionally imply that we have not taken care of ourselves or are somehow responsible for the cancer growing in our bodies.
(Full disclosure: I fell for all this on my first go round of cancer. Those who were with me then know that I went vegan for a year, and switched up all my beauty products avoiding all the chemicals I could! I did yoga, I meditated, I still use essential oils over everything that I can.)
2. Recognize that there is still NO cure for cancer. There is NO cure for cancer!! I have mentioned this in a previous blog...the stats are that about 1 in 8 women will develop breast cancer. 30% of those will join me with metastatic breast cancer. Again, this is not to scare anyone but almost everyone knows somebody with breast cancer so it makes sense that at some point you may also know someone with metastatic breast cancer. Great advancements have been made and I feel fortunate to have the chance to outlive the old 2-5 year survival rate but we cannot get complacent, there is much to be done. We see all these great things about someone being cancer free for 5, 10, 20 years. We see "Survivor" and pink ribbons and think that because some have 1 or 2 rounds of cancer and go on to live cancer free for the rest of their lives that they are cured. 30 fucking percent of women that see it once will get the news that it has spread to other parts of their bodies. Those 30 percent will not "beat" cancer. They will be in treatment for the rest of their lives. It does not end until we die or otherwise make the decision to end treatment. If we are lucky enough to get to the holy grail of what is referred to as NED (No Evidence of Disease), we will still need treatment.
3. I may have mentioned this before but it's worth mentioning again. YES we are all going to die someday. Believe it or not, I have had people tell me that they could get hit by a bus tomorrow as if we are in a competition of who could die first. PLEASE JUST ABSOLUTELY NO on this one. Do not compare your chance of death. There are a really long list of reasons for this and I'm certainly not trying to win this stupid death race with anyone but here are the ones I can think of at the moment...
1. I have been told I have something growing inside me that can kill me.
2. If that something doesn't kill me, the treatments I get for it might.
3. If those treatments don't kill me, the infection or illness I catch from having low white blood cells from said treatment might.
4. Treatments don't always work or can stop working at any time. Progression is always possible...but luckily so is the flip side as seen in my recent scans!! Yay!
5. Back to above...there is NO cure for cancer.
6. I have had to face getting my affairs in order, fill out advanced directives for medical care and have had the most painful discussions with my family members.
7. I see older people and can only hope that I too will get to walk hand in hand with my husband through the grocery store someday or sit in a rocking chair on a porch and reminisce about the good ole days!
8. I look at my kids and hope I will be here for weddings and grandchildren if that's what they so desire.
9. Everyday is a battle in someway for even the most optimistic person which I consider myself. A sore throat scares me in a different way than previously...getting in and out of the shower carefully so I don't fall and break bones that cancer has made brittle.
10. Carefully planning my days to conserve what energy I'm lucky to have for that day...I will not stop living but I must be mindful to not overdue it and run myself down and chance numbers 1-3 doing me in!
It's just not the same and I don't want pity for any of it. I am doing very well despite the circumstances and in fact often feel a sense of gratefulness for it. Strange I know, but I do get to live my life to the fullest in my way. I'm not into the bucket list type way of living though I commend those who do. For me, I get to love harder and deeper. I have the opportunity to re-connect with my family in a very different way and I'm having the time of my life spending every moment I can with all of them. Though all of the above are facts that I deal with and it may sound depressing, it often is not. That is not to say that I don't have days, moments, learning curves adjusting to a new normal but I am truly as happy as any person can be and that is for real. I zero in on each moment and enjoy it to the fullest and that is something I could not attain no matter how hard I tried before this diagnosis. I work because I want to not because I have to. I don't enjoy much of what I'm dealt treatment wise, but I know it's the only way to keep having the sweetest moments in this life for me. I am even grateful for housework and cooking dinner...there was a time in the beginning of this journey that I could barely walk so I cherish each day that I'm able to do for myself. There is just so much more but perhaps that a separate blog...in no way is my diagnosis the automatic death sentence it used to be and there is much to be grateful for.
I sure hope I have not offended anyone...I do believe most everyone I've come across with has meant everything with the absolute best of intentions and love for me. I will always be grateful for all of you and you have seen me through some very dark and scary days but after living with this for 7 months I thought it was time to get a few things out there not just for myself but others dealing with any terminal or chronic illness.
Much love!
