3 posts tagged “chemotherapy”

Meet Jacquie from the PatientsLikeMe Team of Advisors

Posted January 6th, 2017 by

Say hello to Jacquie (@Jacquie1961), another member of the 2016-2017 Team of Advisors. We chatted with Jacquie recently about how she lives with her condition and what it meant to become part of this year’s Team of Advisors; “Joining the team is allowing me to…help others who are newly diagnosed or those who think they have something wrong with them.”

Jacquie also opened up about her passion for animals, especially her dog, Roman: “He’s precious, loving, beautiful and really has the personality of a human.”

What gives you the greatest joy and puts a smile on your face?

I would have to say I get the most joy out of being with my dog, he’s been the greatest addition to my life right before I was diagnosed. He’s precious, loving, beautiful and really has the personality of a “human.” Of course my new kitty is an added bonus of love and fun. All in all, I have a tremendous passion for animals.

What has it been like for you managing multiple conditions?

First off, I had Lung Cancer. Fast forward months, I have a new oncologist and stage 4 metastatic lung to colon cancer. I became the 13th documented case of such as it is highly rare. Every 3 months I have a maintenance plan of scans, blood work (that’s actually monthly) and colonoscopies as I have pre-cancerous polyps that must be removed before becoming cancer. The risk is too high, so that is my life with cancer. I chose this over a life of chemo. I have since my 20’s severe anxiety and panic disorder, my only maintenance on that is the highest dosage of Xanax 5x a day and pray I don’t get attacks. I have tried everything and there is no cure for anxiety like I have it, I would not wish a panic attack on my worst enemy. This is truly a disease that if you have never experienced it you would have no clue how horrible it is. Because of 14 months of intensive chemo my bones and joints have severe damage, especially my back. I go every 3-6 months, depending on the body part, for injections for the pain. THIS has really impacted my life. I can’t do the things I used to do, dance, hike, rake leaves, garden etc., because of the pain. My mornings begin with a good hour on my heating pad for my back just to be able to take a shower. This limits me in doing things on the spur of the moment and even getting to my shop on time. Every day I have to apply pain patches and take pain meds which I despise. But…such is my life, I deal with all of it, juggle all the bs and carry on. Top that off with coronary artery disease and stents, all due to the chemo. Never had heart issues. I won’t say this limits my life daily but it does long term now. I now have added regular cardiologist appointments, scans, tests, etc.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My personal conditions only have the obstacles I myself place on me. Society only needs to be aware that we are all different and we should never judge a person by how they look, talk, walk, or live. Under the shell of someone could be a person who suffers greatly and maybe that scowl on the person’s face isn’t because they are nasty, maybe it’s because they are in horrible pain. Maybe they just got some more bad news about an already bad condition.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I would tell them to think of their worst headache and multiply it by 10, that is real pain. Imagine being in your car and you are suddenly underwater and you can’t get out, you can’t breathe. That is anxiety. The feeling of being trapped and unable to get out the panic attack that ensues is like an out-of-body experience where so much adrenaline is pumped, you are exhausted when the attack is over but relieved you didn’t pass out or die like you certainly thought you would. Having cancer in the midst of this was just another fight for life big panic attack that didn’t go away.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

First of all, the word “chronic” needs to be redefined. Most conditions are not chronic, they are in a maintenance phase or they are lifelong conditions. However, I would always advise a second opinion. Once diagnosed, try and learn everything you can about your condition. Join a group like PatientsLikeMe where you can interact with others suffering and learning to cope with the same or like condition. Coping mechanisms are generally best learned from those who have been and are in the same shoes as you. Reach out and surround yourself with a support system, and most of all cherish that best friend. You will need him or her.

How important has it been to you to find other people with your condition who understand what you’re going through?

It was very hard until I found PatientsLikeMe, then it became easy. There were so many and so many far worse than me I could immerse myself in helping them which in turn helped me to cope and deal with my own issues. Someone always had it worse than me, someone was fighting to live with their last breath, and some do not live and become another statistic.

Recount a time when you’ve had to advocate for yourself with your (provider, caregiver, insurer, someone else).

After my first cancer diagnosis I had an Oncologist who did NOTHING for me for 5 months when I begged every visit for help and told him how sick I was. I changed doctors and found out that my cancer had already metastasized. Once I became strong enough I became completely in control of my medical care, I pick up all of my own scan results, tests, etc. I make lists of questions, I google everything and I follow up with all doctors. Many times I have already diagnosed myself before seeing a doctor and that includes the dentist and the eye doctor. In 2015 I knew my father was not well, and his complaints of pain went ignored by all doctors for several years. I went to my oncologist and told her something is wrong with him, please figure it out. He had stage 4 non-Hodgkin’s lymphoma of the bone marrow. He is now in remission. How’s that for all these great doctors who told him he was just getting old?

What made you want to join the PatientsLikeMe Team of Advisors?

Joining the team is allowing me to further my voice as a patient of several conditions. To help others who are newly diagnosed or those who think they have something wrong with them. To let them know they are not crazy, and not alone. I am also taking this opportunity to educate the doctors within my large medical circle that I am an example of the reason they became doctors. That my time is valuable, too. Sitting in your office and waiting for you for 5 hours is unacceptable. I have pain and it is an issue coming to see you. I am not just another number in your file cabinet.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Mostly I have been on the support side of PatientsLikeMe and try to help others. I have not used it as a tool to help me. I already know what I have and how I cope. But I must say there are days my coping skills don’t work very well, conversing to another member that is down and hurting and lifting them up puts my issues back into perspective. I’m still breathing, I’m still here.

What is it like to be you?

Why I ask myself that question I don’t know, maybe I am trying to understand what it is like to be me, I used to know and have an easy answer: it was great being me. Being me now is not always so great, but I am working on making my life better again. I have my new shop that, after my hurdles of getting there in the A.M., is a fun and rewarding place to be. I struggle with issues I have with my brothers. Aren’t they supposed to care about me not just when I am labeled as “sick and dying” but always? Do I expect too much? I think when one goes through so much and continues to constantly have to fight to keep a balance but never gets the balance it’s easy to fall into this abyss of “why me,” so I do my best to stay above that hole. I don’t ask “why me,” because there are no answers. I’m simply a good, driven person who wants to be happy, to help others, to enjoy my days, have fun like I used to and travel freely like I used to. I have a lot of “used to’s” I want back, maybe I should just live with who I am now but I refuse to give up or give in. There are ways I will feel better and I will find them. I got dealt a lousy deck of cards so I have to reshuffle now and deal another deck and make the best of it.

Share this post on Twitter and help spread the word.


Leaning on loved ones—An interview with lung cancer member Clare

Posted February 23rd, 2016 by

When Clare (Riverdale) was diagnosed with non small-cell lung cancer, her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before.

We recently connected with Clare, who emphasized “the value of a loving mate” in her experience with lung cancer.

Tell us a little bit about yourself.

I am 73 years old, grew up on a farm in Alberta. My father smoked a pipe and used to joke about turning the air blue. No one else in the family got cancer. I smoked starting at age 20 while studying for exams, trying to stay awake, then continued as people who smoked got a coffee break and those who didn’t smoke really didn’t get a break. I continued to smoke less than a half a pack a day till age 28, then thanks to Nicorette gum stopped easily, as did my husband. We are very physically active. I rode my bike several miles to my job — weather- permitting — as we have great bike lanes and didn’t live too far from the center of the city. We continued to ride daily after retirement for exercise and belong to the European Waltz Time Society for bi-monthly dancing.

You were diagnosed with lung cancer after going to the emergency room for severe back pain—what went through your head when you received the news?

I was glad to hear that my pain was not a heart attack and that my cancer had been detected in an early stage.

In your profile, you mention that your husband is living with prostate cancer. How has it been supporting each other while managing your own health?

I was so sick during my husband’s treatment with radiation that I did not support him much but he seemed to sail through. The staff at radiation called him the entertainer and the coffee shop he attended daily called him by name and had his coffee ready as soon as he walked in the door. Only once did he have to delay because he had to have a bowel movement and a full bladder each day prior to treatment. He still has prostate pain and takes pain meds for that but his PSA says the treatments were successful and every 3 months the bladder checks say he doesn’t have bladder cancer. All I can say is that without him I would be willing to die now. But he says he can’t stand the thought of being alone, and I worry about him for that reason.

We noticed you regularly track your quality of life and symptoms on PatientsLikeMe. Have you seen benefits from tracking?  

I find it difficult to put in new things like a change in dosage of a medication, or if I want to mention my right breast is getting larger and nipple is painful. I have used it a few times to remember when an event happened.

What’s one thing you’ve learned in your journey with lung cancer that you’d like others to know?

Something I learned in my lung cancer journey is the value of a loving mate. Going through this alone, I would stay in bed and in misery but because of my mate, I eat properly, I exercise and he gets things done when I couldn’t manage. Maybe I would but because I don’t have to, things are better. Yesterday I spent the night worrying about pain in my tongue and wondering if a jagged filling was causing the sore. He called the dentist and I was taken right in and reminded about one of the side effects of Giotrif is mouth sores and to rinse with salt water. Alone I would have continued to stew instead of starting right away on treatment. That is why an advocate is so necessary.

Share this post on Twitter and help spread the word.