Once A Cancer Patient, Always A Cancer Patient

I recently read a blog post from one of my favorite bloggers and author, Nancy Stordahl.  She discusses the fact that seven years after her diagnosis she still needs her Oncologist.  After reading this post and the comments left by other women, I decided I wanted to continue that discussion here.

After a cancer diagnosis, finding the right medical team is not always as easy as it may sound.  Of course you start with whoever is in your area, any local cancer center, and who accepts your insurance.  One thing you have to consider is that you will be working with this team for a very long time, especially the Oncologist.  Once treated for the disease, you will still continue to have regular visits for blood tests and exams for years to come.

For instance, my treatment was over at the end of 2013, and here it is May of 2017 and I am still seeing my Oncologist every 3 months for blood tests and physical exams.

The doctor/patient relationship must be a solid one if you are both going to deal with each other this long.  According to Nancy's blog, finding the right doctor has not been easy for many patients.  You must decide what things are important to you in your medical team. 

Does the doctor listen to you and answer your questions? Does he or she treat you kindly or are they stern and overbearing?  How much experience do they have treating this disease? Do they discuss all the many different treatments for cancer and help you make the tough decisions?  Do they welcome all of your questions and do their best to find you answers? 

These are all good questions to consider when forming this relationship. Having to change doctors in the midst of treatment can be very stressful and difficult with so many emotional issues going on at that time.  

Nancy went thru 5 doctors before finding the right match. 5! That is nuts!  Her 5th choice was a woman who had extensive experience with BRCA+ patients so that was a good match for her.  That relationship turned out to be a disaster, so she went back to choice #4 and developed a relationship of mutual respect.  However, to hear her tell it, this doctor is warm and cordial, yet they do not chit chat much. There are no hugs, only handshakes, and they usually stay on topic when discussing her case.

If that sort of relationship works for you then that is great. For me, I got so lucky I still thank the universe every day! My Oncologist is a leader in his field here in Southern California, and one of the happiest, funniest guys I have ever met! He is the lead Oncologist at my local cancer center which is literally only 15 minutes from my house.  The only snag I ran into is that no one at this center accepted my insurance. Because my general physician worked with all of these folks at our local hospital he went to bat for me and my team decided to take me on despite my insurance!

This man tells me jokes, hugs me every single time I walk in, kisses me on the forehead and tells me I am beautiful even when I feel like the ugliest duckling.  I have always felt safe in his care and his entire team. His nurses are knowledgeable, caring, and also full of personality.  His team of radiologists and surgeons were also great people that all made my journey uplifting and actually a bit fun! Even the nurses in the infusion room for chemotherapy had me laughing and chatting so the time would fly by.

There are several other reasons why I adore this team and this cancer center. One big reason is that I have online access to my medical records so I can see all my test results as they are posted. This also means my general physician can also follow my treatment and test results, so discussing anything between my Oncologist and regular doctor is so easy, and they can communicate with each other as well!

I realize now after reading Nancy's blog post that I am the exception to the rule and I feel so bad for people who are having a tough time with their medical staff.  

One women commented that her doctor does not have the time for her list of questions at her visits. Another women commented that an intern used the word "cure" when discussing chemotherapy with her and this made her lose confidence in their experience. Another woman said she went the way of a naturopath instead of the traditional Oncologist and that seemed to be working for her.  

The one recurring theme I see is that all these women discussed that their relationship with their doctor was a bit too impersonal and cold.  So many people are getting cancer today, and these doctors can be overbooked, overworked, and we all become just a number a to them.  If this is not the sort of relationship you want, my advice is to just keep looking.  If I had to visit a doctor every 3 months that did not listen to me, or had a cold personality, I would go mad!

I still have another year or more to go with my doctor and while the visit itself can be stressful, I look forward to seeing him.  He knows I am on pins and needles waiting for each blood test result, yet always has a joke or a hug or a smile for me. My biggest fear right now is that he is close to retirement and I may have to begin the search for a new Oncologist if he leaves. You can bet I will judge every doctor to come by my current one!


Image provided by Pixabay.com 

Caregivers Need Love Too!

A cancer patient’s caregiver is as important to them as their team of doctors.  Many patients have several caregivers while others have only one.  It could be a spouse, parent, child, sibling, co-worker or a dear friend.  This person signs up for a long hard road.  Caring for someone with cancer is not easy -physically or emotionally- and it takes at least a year to get to the end of treatment.  For those living with stage 4 cancer it can go on for many years.  The outcome may not always be survival, and they must carry that weight as much as the patient themselves.

Caregivers need just as much support, if not more, than the patient.  They are the ones who drive the patient to each of their appointments.  They sit with them while they receive chemotherapy.  They can listen to the doctors and collect important information that the patient might miss. They hold the bag or can when the patient is nauseous.  They do all of the cooking because the patient cannot deal with the smells of most foods.  Some patients need help bathing.  They have to keep a positive attitude around the patient even though they may be fighting back tears or anger.  They have to convince the patient that everything is going to be OK, even though they are not sure themselves.  They may have to help the patient with bandaging, draining tubes, or taking medication.  They have to get up at 3 AM to rush the patient to the emergency room if something goes wrong. 

They do all of this while trying to maintain their own daily routines such as family, meals, and their job.  I applaud every caregiver out there for their strength, endurance, and unconditional love!  Thing is, who cares for the caregivers? 

Fortunately there are many programs around today that do just that.  They provide support and information for caregivers on a range of subjects such as time management, financial planning, ideas for stress relief, even nutrition.  Organizations like the American Cancer Society, the National Cancer Institute, and the National Alliance for Caregiving all provide information on their websites.

The best plan is to have more than one person helping the patient.  That way you can split the responsibilities and relieve some of the stress.  It can be especially hard when you simply have no one else to help.  One of the best things to do if you are trying to care for a patient alone is to seek out a support group.  You can do this by phone, through email, or even online.  Chatting with other caregivers is the best way to learn the ins and outs, and gather answers and advice from other caregivers who have been through all of this before.

Where to begin? You can use the links I have provided here, or you can talk to the patient’s healthcare team to get you started in the right direction.  Most cancer centers have libraries you can visit to not only research the patient’s particular type of cancer, but they are also a great resource for meeting other people in your area who are dealing with the same issues.

As the patient, you also need to be able to seek out a caregiver once you are diagnosed.  If you have no immediate family that can help you, try asking co-workers, friends, or the healthcare staff where you are receiving treatment.  It is extremely important to have help during this time and not to be too afraid to ask for it.  You cannot do this alone, nor should you have to!

My mother was my primary caregiver and she had relatively no help.  I can not even imagine how hard that must have been for her, to worry that her child might die before her.  How hard it must have been to watch me lose all of my hair.  I am sure I did my fair share of complaining as well.  Mom...I love you and I appreciate you, and I thank you for being the best caregiver I could ever have!