Life After Cancer

Getting Real with Feelings

Since having cancer I have joined many support groups, both online and in person.  I have read and subscribed to many blogs.  One of the things that is great about reading people’s blogs on cancer and survivorship is how positive and inspirational people are.  However, this can be a blessing and curse. Sometimes the positivity lifts me up, gives me hope and strength.  And sometimes, it just makes me feel badly.  I feel angry at myself for not being as positive as these other cancer patients or survivors.  I feel like I should be more grateful, more positive, more fill-in-the-blank-with your own-happy-word.  And then, I get into this crazy cycle of feeling badly, and then feeling badly that I feel badly.  It’s tons of fun for everyone involved.

Going through cancer treatment and then being a survivor or living with cancer is a roller coaster.  For me, going through my initial treatment was rough.  I had laparoscopic surgery, then 6 rounds of chemo, 30 rounds of external radiation and 3 rounds of internal radiation.  I did my best to stay positive through it, but it was not easy.  And to be honest, most of the time I wasn’t very positive about what I was going through.  I felt sorry for myself.  I felt like it wasn’t fair, why me, what did I do to deserve this?  Then I would go to support groups or read blogs where people would talk about how having cancer had given them a greater appreciation for their life, their families, their friends.  Don’t get me wrong, I felt all of these things, but more often than not I just felt pissed off and exhausted.  I wanted to feel changed and inspired to advocate and see the blessings in the little things, and sometimes I did.  But quite often I didn’t.

It is hard to feel grateful when you are nauseous, exhausted, depleted, and in pain.  That is ok.  When I would go in to my cycle of feeling depressed and angry and then get mad at myself for not being more thankful that I would make it out of this alive, when I would start telling myself that I should be more grateful or more positive, my boyfriend would constantly tell me, “You are should-ing on yourself again.”  Going through cancer is hard enough, and the side effects both during and after treatment are draining (to put it mildly).  We should at least be able to give ourselves a break. 

I also felt like many people had it worse than I did.  I was lucky to have a supportive family that was close by and could help me at a moments notice.  I have friends and a boyfriend who have supported my unconditionally.  My cancer was treatable and I am expected to live a long and happy life.  Others that I know are not as fortunate.  So I should be more grateful (see, there I go again, “should-ing all over myself”).  But grief, sadness and anger isn’t reserved for only some.  If we took everyone who had a tragedy or illness in their life, and lined them up based on some ranking system of “who has it worst,” would only the last person in line be allowed to feel sorry for themselves and their plight in life?  That’s ridiculous.  Just because someone else has it worse than you do, doesn’t mean that your struggles are any less valid.  You can feel empathy and sympathy for those in other situations while still recognizing that your situation may be pretty crappy as well. (As a I write this, I am giving myself this advice, because I don’t always recognize this!).

Another fellow cervical cancer survivor told me recently that one of her mantras is “It’s ok to not be ok.”  This was amazing for me to hear and resonates so much with me, especially recently.  Whatever you are feeling, good or bad, it’s ok.  Allow yourself to cry, to yell, to be pissed or depressed.  Let those feelings come and allow yourself to truly feel them.  That is the only way to let them go and move on.  (Again, as I write this, I am thinking….wow, you should do this more often!).

People write inspirational and positive blogs to give others strength and hope, and to advocate for change, and all of that is useful and wonderful.  But sometimes it is nice to hear that people are struggling with the same crappy emotions that you are.  I have learned to look at blogs differently now.  I read them like Facebook posts.  Many of them are glimpses into the best of people’s lives and the best of their moments throughout the day.  Most people don’t post pictures of themselves in pain or crying in the fetal position on the floor.  They wait until those moments have passed and write about getting up and moving on and counting their blessings, and that is important.  But it is also important for us to know that we all have those moments of sheer frustration and anger and complete debilitating sadness over the hand we have been dealt, and that is ok too.  I want you to know that in those moments you are not alone.  There are, unfortunately, many others who are feeling the same way.  And maybe in some way that can bring you comfort.  You don’t always have to be positive.  It’s ok to not be ok.

Check out more about Ana’s story here:  https://cervivor.org/stories/ana/

The Cost of Cancer

It’s an unreal feeling being diagnosed with cancer. Like an out of body experience, I was afraid to hear “its cancer” but at the same time I needed to know what was going on, so I could make the next move. It’s not at all like in the movies. In the movies you’re sitting in a doctor’s office with your spouse or loved one. The two of you are parallel to each other in front of a specially made wooden desk, fancy carpets adorn the floor, white walls covered with plaques from the various degrees your specialty physician has acquired over the years. The doctor enters the room and is wearing a white coat and stethoscope around his or her neck. They sit down and deliver the news. “I’m afraid, you have cancer” and then you cry. Contingent on your stage of cancer, dictates how optimistic you will be.

The part no one shares or talks about is how much it cost to get the treatment to save your life.  It does not matter the type of insurance you have or don’t have, nothing can prepare you for the cost of cancer.

Contrary to any movie I’ve watched, I did not immediately start cancer treatment. At the time I received SSDI and before I could have any type of surgery Medicare must approve everything. My doctor gave me two options. I could have a radical hysterectomy, or I could start chemo and radiation immediately. I’m incredibly vain and decided that I didn’t want to lose my hair and opted for the radical hysterectomy. I have four biological children and have lived with multiple sclerosis since 2005, trust me I wasn’t trying to have more children. When I awoke from surgery, I was told the cancer could not be removed and I started treatment a week later.

Once the cancer train starts moving, there is no way to slow it down. My life becomes an instant blur of poking, surgeries, wound care, medication, disappointments, guilt, frustration and lots and lots of money. It’s not until I’m midway through treatment that I started getting the letters showing the balance I owed for trying to stay alive. $13,000 every time I was radiated for 11 minutes over 6-week period, 5 days a week. I had chemo once a week for 6 weeks for $2,000 – $3,000 each time. I also experienced brachytherapy, 6 times in total, each treatment lasting 4 – 6 hours at $8,000 each time. There was also the surgery to have a port put in – this was to help make chemo easier and this convenience was around $1,500, not including the surgery itself.

Once I completed all the necessary treatments to live, I was then bombarded with letter after confusing letter having the popular phrase “portion you owe” written at the bottom. This is the part when I found out the cost of the gauze which covered the glue used to close the holes created by the Da Vince robot.  I was privy to how many people were in the room when I had surgery. I then find out the hospital, surgeon, anesthesiologist, the person who drew my blood all billed my insurance separately. No one talks about that, no one shares the confusion that was my life for at least a year after finalizing treatment. The phone calls that came from all the bill collectors as I tried to explain I had cancer and during that time I was much too busy to burden myself with mundane tasks such as paying for my  electricity, car payment or to think about the credit card debt I now faced because I was way to busy vomiting and trying to keep at least water down (said with sarcasm).

Lastly no one talks about trying to find you again – the money that goes into your second chance at life. I want to make sure everyone knows that until we find a cure for cancer, we’ve got to live with cancer. Living with cancer can be expensive, there many hidden costs and some not so hidden. But I have faith that some day choosing to fight to live won’t cost your sanity and your entire savings. After being diagnosed with a life-threatening illness like cancer, you might not be thinking about your financial situation after you recover. One of the ways to get yourself back on your feet after experiencing something like this illness, you could consider finding the best credit card to build credit. This would allow you to eventually achieve a loan to help you get your life back on track. This illness can be expensive, so sometimes a loan is one of the best ways to help you financially. Although, there will be other ways of doing this too.

Tamara Clough is a cervical cancer survivor living with multiple sclerosis. She is a mother of 6, biologically 4 and a wife of over 12 years. After an over 10 year absence from the work force, she is now a community health worker for a local non-profit community health center and volunteers with the American Cancer Society, is an HPV Vaccination Ambassador, and an ACS CAN Ambassador for region 6 tasked with helping raise the smoking age of cigarettes to 21 in Washington state.