I have been struggling with loss of smell and taste for years and have come to the conclusion that it is medication induced. I gave myself a 6-month treatment holiday in early 2017 and the loss was starting to recede just enough to give me hope but came back with a vengeance after I restarted meds. Besides loss of appetite, complete loss of joy in life is my plague.
I'm curious as to how many suffer this loss and how do you cope?
It pains me to read that your life is devoid of joy. This disease is a thief. It takes so much. It takes so much energy to keep rising above everything mbc throws in our path. Have you discussed the loss of taste and smell with your doctor? I have read that a zinc deficiency can impair smell. Maybe pursue testing for vitamin and mineral levels to see if you might be helped by supplements. You asked how do others cope. For myself, I hit rock bottom, suicidal thinking. Realized If I had even a few years to live, this was not a life. I go to therapy, take an antidepressant. I began to learn about Buddhism. I am not a religious person, so Buddhism gives me a philosophical framework and comfort. I work full time, it keeps me from focusing more on my Cancer. I love to travel, and have planned and taken some wonderful trips, the memories of which nothing can take away. I have pets. They are a joy. Unconditional love. And I’m lucky. I have a supportive husband and some good friends. Please don’t settle for existing. Don’t make this Cancer the center of a dark universe. Get help. Get support. Call the SHARE hotline and talk to someone who walks in your shoes. You deserve more. Who knows how long anyone has to live. When you start to feel better, pursue a special interest or activity that lights up your life. I still have dark moments. After a good cry or private pity party, I fight to get up and keep going. I want to live my life. What other choice is there?
I have been stoic and brave all my life. Now 72, I lost my husband to esophageal cancer, which manifested as brain mets, stage IV and took him while doing IV chemo treatment in 5 weeks... I have never wanted to live without him and died of a broken heart the day he died. But for the sake of my daughter and son, 2 grandsons and a business with employees, I pushed on and kept it together. I'm ready to go, only fearful of making my children sad. For almost 2 years I tried to figure out why I sneeze and blow my nose all day, even had a brain MRI and a full allergy panel. Daughter of a French chef, born and raised in France (52 years in the US) and a fair cook and baker myself, food was a big deal. Now the 17-year old cat and I quickly dispatch meals only to satisfy hunger and protein requirements. I love my cat. She gives me a lot of "purr therapy".
I have a brand new great granddaughter and started crocheting again. Still have family in France but always hated going there and don't travel much further than the doctors' offices and the grocery store. Never liked to travel. I Skype with my sister every week. I have no energy, sleep like Stonehenge and take afternoon naps. I maintain the business database and still enjoy that very much. I need to remind myself more often that I should be thankful for everything I have. I've rambled on long enough. Tomorrow is a new day... Thanks for listening.
Hi ladies. I blog my feelings. It’s helped me a lot. I’m on Caringbridge.com, search brendawilsonlubbock if you’re interested. Bless you and may joy surround you in comfort and peace.
Dear GreatMamy,
How long has it been since your husband passed? I won't pretend to know how devastated you are, and I am so sorry for your husband's passing. I do sense some ambivalence, though, when you mention your family, getting back into crocheting, your business and your cat. Perhaps these don't seem enough to make you want to go on right now, but could it be possible? At 72 you are still young. I hope to be 72 one day (I'm 65). Do you have someone to confide in? Being the backbone of a family and business comes at a cost, especially now. Maybe those around you can assume more responsibility while you pay attention to yourself. Getting out of the house is essential. It reminds me of the first few months after my diagnosis, when I sat on the couch shaking, wrapped in a blanket. I could barely get out of bed, I literally stayed under the covers. Of course, I did not have to cope with losing my life partner on top of it all. I, however, do not have the support a close family that I created. It sounds like you are grateful for the good things in your life, just depleted and beaten down by your losses. I hope in time you can find your way to find a way of living that brings you many joyful moments.
You are so sweet and so perspicacious. Yes, They need for me to be the pillar... and at times it’s a burden whereas at other times it’s a blessing as I do best when I’m useful and still creative. Our true anchor was my husband—he died April 2012–and we all miss him. I’m a loner and my only real friends are my children, we’re very close. After my post yesterday I got back on the life train and had a pretty good day today.
You should be a psychologist, you have great instincts and advice. Thanks for your reply.
Oh, GreatMamy, you are generous with compliments. I need to take my own advice sometimes! Glad you feel better today. 💕
I have been wanting to ask you how Woodstock was and who you saw at Levons barn. It must have been a joyful trip! Marianne
Loved it. Weather kind of cold, saw first few flakes of the season. Rented house with views of mountains from the back in Mt Tremper. Saw Shawn Colvin at The Barn. Love that place. Nice evening out. Small laid back audience. Love the Garden Cafe. The tofu satay is amazing. It’s all good there. Had a veggie based breakfast at Oriole 9. And the famous skillet breakfasts at the Phoenicia Diner bear the Esopus River. Wish I had a little shack along that river. Cruised the shops and held myself
back. Even the shopkeepers are interesting and friendly. Went to flea market and bookstores. Most of all spent quality time with husband, son and a couple whom we are friends with. They are about 10 years older but spry. A little too much talk about who’s dead and dying, and of course most of them had or have cancer. That talk is rough on me, but they are lovely people and needed to vent. As did I, but not about cancer. We sat around the fireplace and took in the views. A great place to exhale. Thanks for asking. Woodstock will be celebrating it’s 50th anniversary soon. That will be a happy chaos I’ll avoid. Hoping for good scan results mariootsi!
So glad you had fun! Thank you for the thoughts for a good scan!!!!!! Love Marianne
I agree! I lost taste for food in August this year when I was on Afinitor. Since I stopped most of my taste has come back. But I noticed that tomato foods like pizza, catsup, pasta sauce all have a funny taste still. I hope it goes away because they are my favorite foods. So I am sure the different meds effect our taste buds in some way. 🙁
I'm sorry you are having such a hard time! I loss my sense of smell and taste when I was on chemo 5yrs. Ago. It has come back a little but it is quite a loss! Hope you can find your joy again. I understand that loss too! Unfortunately a side effect of mbc! Take care, Love, Marianne
I have moved to bolder flavors. If you can tolerate it, bump up the Tabasco or garlic. Adding an additional spice, like red pepper flakes on your pizza. Also add lemon to water. I loved water more than anything, now all water tastes blah without something added.
Yes, I too like spicy foods better. Lemon zest helps a bit with baked goods and juice in water. Occasionally get a whiff of brewed coffee. Rely on texture, crunch of granola, creaminess of bananas. Try to speed through meals or read to distract myself from the chore of eating.
iBrance and hair loss
Hair loss
Afinitor and taste buds off!
HELP WITH TERRIBLE HAIR LOSS
Loss of appetite
