Radiation

Celebrating survival!

/ edebock / 10 Comments

2020-logo-color_New

Today, the first Sunday of June, is National Cancer Survivors Day, an annual, worldwide celebration of life set aside to honour the millions of people worldwide who are living with and beyond cancer and to raise awareness of the challenges that they face.

Major advances in cancer prevention, early detection, and treatment have resulted in longer survival, but a cancer diagnosis can leave a host of problems in its wake. Physical, financial, and emotional hardships often persist for years after diagnosis and treatment. Depending on where they live, survivors often contend with rapidly rising drug costs, inadequate insurance coverage, difficulty finding or keeping employment, and a lack of understanding from family and friends. Despite these difficulties, cancer survivors can live active, productive, inspiring lives.

So what is a survivor? To many, the term ‘cancer survivor’ suggests a person who has beaten their cancer; perhaps one who has been cancer free for several years, but I like the definition used by the National Cancer Survivors Day Foundation. “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.”

In other words, I am a survivor! In fact, I’m a three times survivor.

hello-im-a-survivor

I live with cancer every day. Unless a cure is found for neuroendocrine cancer (NETS) within my lifetime or God performs a miracle on my behalf, I will never be cancer free. People have a hard time grasping the idea of a chronic cancer. The usual assumption is that patients either die of their disease or they are cured, thereby becoming cancer survivors, but I look at my situation differently. I may eventually die of my cancer or I may die with it, but either way, I am a survivor! Fortunately my NETS is stable at this point and it doesn’t significantly impact my day to day life. I’ve had all the PRRT treatments that I can have, but a monthly injection given here in my home by a visiting nurse seems to be keeping things under control. I had my 87th of these “butt darts” just over a week ago.

I’m also a cancer survivor in the more tradition sense, as in one who had the disease, but is now free of it. As many of you know, seven months after my NETS diagnosis, I was diagnosed with a second, completely unrelated cancer that was removed surgically. Six weeks of radiation followed and, since that time, there has been no recurrence.

Cancer number three, most likely caused by the radiation that I received for the other two, was discovered in my thyroid almost exactly a year ago. Though it’s not a particularly aggressive form of cancer, it’s the one that concerns me the most right now. I was supposed to see my specialist two months ago and have an ultrasound to determine whether or not the cancer is growing. Thanks to Covid-19, that didn’t happen and it’s been eight months since my thyroid was last looked at. Though my specialist still isn’t seeing patients except in emergency situations, I decided to do a bit of self-advocating and his office is now in the process of trying to arrange for me to have an ultrasound done in a hospital closer to home in a small city that has only had one Covid-19 patient.

Yes, in spite of all this, I am a survivor! Survivors are people from all walks of life, of all ethnicities and income levels. They’re children, moms, dads, and grandparents. They may be your coworkers, friends, and loved ones. Traditionally, National Cancer Survivors Day celebrations have included parades, carnivals, health fairs, awareness walks, candle-lighting ceremonies, and other community events. This year, due to Covid-19 restrictions, the celebrations may be somewhat more subdued, but life with and after cancer goes on and it ought to be about more than just surviving. It ought to be about living well and that’s always something to celebrate!

 

Fitness from the shoulders up!

/ edebock / 6 Comments

“Normally you should be able to place the two middle joints of your index and middle fingers in your mouth” reads one of the many handouts that I was given at the Cross Cancer Institute this week.

You tried it, didn’t you? I knew you would!

I can do it, but barely. In fact, when I do, I’m left with imprints of my teeth on my fingers.

I’m amazed at all the services available to patients at the Cross and I haven’t even had to go looking for them. This week, I had appointments with a speech language pathologist (who knew that they also deal with swallowing issues?), a nutritionist and an occupational therapist and now I have a whole new exercise routine to follow. I have lip exercises, swallowing exercises, jaw exercises and neck exercises to do! Sadly, none of them requires cute exercise attire!

The lip exercises are meant to help correct the crooked smile that I was left with after last month’s surgery. It has been gradually improving as the facial nerve recovers and if it never got any better than it is right now, I could certainly live with that, but I might as well do what I can to help it along.  The exercises, which involve making a variety of funny faces, are simple and easy do while I’m engaged in other activities.

Surgery also left me with a fair amount of stiffness in the neck and jaw area, hence the difficulty getting two knuckles between my teeth. Radiation can cause increased stiffness in these areas so, rather than becoming a permanently stiff-necked person, I’ll be doing neck and jaw exercises at least 3 times a day for the duration of my radiation treatments and for several weeks or possibly months afterwards. Fortunately, they’re also simple to do and don’t take very long.

Dysphagia, or difficulty swallowing, is a common side effect of radiation to the head and neck so the swallowing exercises that I’m doing are preemptive, designed to minimize or prevent problems from arising. They’re not particularly difficult to do, but because they’re done with sips of water, they involve consuming copious amounts of H2O. Since staying well hydrated is important, this isn’t a particularly bad thing but it does mean having to break the exercises down into manageable amounts spread throughout the day.

I haven’t lifted weights since having surgery and the treadmill is gathering dust again now that the weather is suitable for walking outdoors, but I’m still fitting in my regular morning exercises 4 or 5 days a week. This is the first time I’ve worked on being physically fit from the shoulders up though!

Somewhere between pushy and patient

/ edebock / 10 Comments

Very early on in my battle with cancer a dear friend gave me some very wise advice. “Please don’t be afraid to advocate for yourself,” she told me. “You will have to wait at times but there is also a place for you to pick up the phone and ask for results, action, a timeline.”

It’s called being proactive.

proactive

Being proactive falls somewhere between pushy and patient. Pushy is defined as “excessively or unpleasantly self-assertive or ambitious.” Though waiting for appointments, waiting for test results, waiting to find out what’s going to happen next is is a huge part of this journey, I don’t want to be pushy. I don’t want to be excessively or unpleasantly assertive. I don’t want to phone too often and make a complete nuisance of myself but I’m not willing to be overly patient either. Patient means “able to accept or tolerate delays, problems or suffering without becoming annoyed or anxious.” No thanks!  I’m definitely not willing to accept or tolerate unnecessary delays and I do become anxious!

Being proactive is all about balance and it has been especially important since my second cancer was diagnosed. I’m not willing to simply sit back and assume that all the experts involved in caring for my two entirely different cancers are talking to one another and coordinating their efforts. I’m being proactive and advocating for myself. I can’t control the situation or cause things to happen but I can ask questions and I can ensure that everyone involved in one part of my care knows what’s going on in the other part.

Regardless of how proactive I am, waiting is still a big part of the process, but lately things seem to have sped up. Surgery was just three weeks ago. I’ve already been back to the city for two appointments since then and I have another one tomorrow. Due to the size of the tumour that was removed and the fact some cancer cells may have been left behind, the next step is 30 radiation treatments over a six week period. At tomorrow’s appointment, molds will be taken to make a mask that will ensure that my head remains in the correct position and the radiation targets exactly the right spot each time. Because radiation to the jaw can cause dental problems and I need to learn how to prevent that from happening, I also have a dental consultation booked for the end of next week. Radiation will begin soon after that.

In the meantime, treatment of my neuroendocrine tumours is on hold, but a CT scan on June 12 will tell us whether or not there has been any change and I will be proactively advocating for resumption of a regular treatment schedule as soon as radiation is finished.

Being proactive doesn’t come naturally to me, but it’s getting easier all the time and it gives me some sense of control in a situation that is largely out of my hands.

In what areas of life have you had to be proactive?