Paaola Sefair survived papillary thyroid cancer | Radiation treatment | My CareCrew

DESCRIPTION

The guest on today’s @CancerInterviews podcast, Paaola Sefair, tells host Bruce Morton how, with the aid of radiation treatment, she survived papillary thyroid cancer.  While her care team addressed the medical piece of her treatment, she felt the emotional part of her journey went unaddressed.  That inspired her to establish My CareCrew, a support group with an app that seeks to maximize care for patients and caregivers, and the emotional phase of their journeys.

For Paaola Sefair of Amsterdam, The Netherlands, her cancer journey began when she had trouble swallowing.  She sought medical attention and a doctor suggested she get an ultrasound.  That led to a biopsy and a diagnosis of papillary tall cell, an aggressive form of papillary thyroid cancer. 

Radiation treatment and a pair of surgical procedures led Paaola Sefair to survivorship.  However, she says the toughest part of her journey was the emotional piece.  Her son was 18 months old at the time of her diagnosis and couldn’t understand why mommy couldn’t go out and play with him. 

Her recovery was also difficult because a close friend had died from cancer, a friend with a child almost the same age as Paaola’s.  It took Paaola more than a year to realize it was okay for her to have recovered from her diagnosis while her friend did not.

Paaola Sefair began talking to other cancer patients and caregivers, and learned that emotional facets of their journeys were just as tough as the physical components.  This led to her founding MyCareCrew.  Its app identifies four emotionally-related pain points in a cancer journey and individually tailors a gameplan to help people navigate their way through their journey.  Paaola says this app is needed because many times a patient or caregiver doesn’t know right away how they can be helped or how they can share help.

Additional Resources:

Support Group: My CareCrew; https://www.mycarecrew.co  NOT .com

TRANSCRIPT

Bruce Morton: This is the @CancerInterviews podcast.  I’m your host, Bruce Morton.  Our guest on this episode survived thyroid cancer, then felt a need to help others, and in a big way, she is doing just that.  She is Paoola Sefair of Amsterdam, The Netherlands, and regardless of whether you are a cancer patient or a caregiver or know someone who is, she has a wealth of information that can be of help.  So, here she is, Paoola Sefair, and Paoola, welcome to Cancer Interviews.

Paoola Sefair: Thank you.  Thank you so much, Bruce.

BM: Paoola, it is our custom to start out by learning a little bit more about you and your life exclusive of cancer, so, if you would, tell us a bit about what you do for work and what you do for fun.

PS: I am a mom, wife, daughter and a “cool aunt” as my niece tells me, and I have a nine-year-old boy who keeps me extremely busy.  He is super hyper and just keeping up with him is about all I have time to do, other than My CareCrew and I love traveling.  That’s my one of my passions in my life to meet different people and see different places, and other than that, I am a homebody.

BM: Your moving toward advocacy was preceded by your own cancer journey.  When did you notice something wasn’t quite normal, something wasn’t quite right?

PS: It was really kind of a fluke when I started to figure out what was going on.  I had trouble swallowing one day.  I didn’t think much of it.  Then it happened again a couple weeks later, and I wondered why is it happening.  Then when I was in for an appointment, I happened to ask a doctor.  He had nothing to do with cancer or ENT and he suggested I get an ultrasound and see what’s going on.  That led to a biopsy and a diagnosis of thyroid cancer.

BM: And what type of thyroid cancer was it?  I think there are four different types.

PS: Papillary Tall Cell.  It is an aggressive papillary.

BM: For anyone who is diagnosed with cancer, a diagnosis is staggering information.  Everyone is different and everyone handles this news differently.  What was your reaction to this awful news?

PS: In the moment I found out the news, I was in the appointment with my son, who at the time was 18 months old.  The doctor came in and blurted it out that I had cancer.  I was wondering if I would be around to see him grow up.  Then I went back into my typical approach to life, wondering what would be next, what’s the action plan, what needs to get done.  As I was going through my treatment, physically I was getting better as I was going through the process, I didn’t realize that until several years into the process I didn’t deal with its emotional side of the experience I had gone through until it just hit me all at once.  It unraveled me and I realized I had to go in for therapy and work with specialists to try to navigate and work through and process all the feelings and emotions and all the anxiety and the trauma I went through for several years, but I had ignored it to the point that I couldn’t do it anymore.

BM: Your thyroid cancer treatment.  What was the toughest part?

PS: The recovery from all the surgeries and the radiation because my son was a year and a half old.  I remember many times trying to explain to him why mommy couldn’t go out and play with him.  He would tug at my hand, and I just didn’t have the energy and that was the hardest part.

BM: So, you’re saying in terms of going through the treatment, the emotional piece was tougher than the physical piece?

PS: Absolutely.  Many, many, many times over the emotional part has been harder to deal with and to heal from than the physical piece.

BM: But, you reached a point in which physically, and I hope emotionally, too, that you turned a corner and edged closer to recovery.  What was that like?

PS: It was a real emotional time for me because that was around the time my close friend and co-founder of My CareCrew had passed away from cancer.  At that point in time when the doctor told me he didn’t see signs of disease following the second set of surgeries, I just started bawling.  The doctor couldn’t understand and asked me why I was so sad, and I said my close friend had died from cancer and she also had young children.  For me it was so hard to come to terms with the fact that I felt that by luck I was here, and she wasn’t, and my son had a mom and hers didn’t, and that was really overwhelming to deal with at the time.  So, it was bittersweet news that I didn’t have the disease, but I couldn’t feel good about it for almost a year or longer until I acknowledged it was okay to feel happy to have that diagnosis and not feel guilty about it. 

BM: We’re confident you’ll be able to learn some tips and tools to help you through  your cancer journey, but first we’d like to invite you to please give us a ‘like,’ leave a comment or review below and share this story with your friends.  Kindly click on the ‘subscribe’ button below and click on the bell icon, so you will be notified when we release our next interview.  And if you or a loved one are facing a cancer diagnosis, please click on the link in the description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”

Back to your story, Paoola, what from this experience inspired you to want to help others and take that desire and put into action?

PS: So, I had gone through my cancer experience when my good friend, Agnieszka, was also diagnosed.  When she was very ill and we all rallied around her and wanted to make sure she knew she wasn’t going through this alone and that she had friends she could count on and that she could be heard and be understood, in that experience, when she got a little better, I shared with her that I didn’t know if I had shown up for her the way she may have needed me to show up.  I told her I knew how to go through cancer as a patient, but I didn’t know how to go through cancer as a friend.  I didn’t realize at the time how stressful and how much anxiety there is around supporting a friend and a family member that is going through cancer.  That conversation and that insight led to her and I having many conversations about how horrible it is to go through cancer.  Nobody has a good experience going through cancer.  I wondered how could we do anything to help.  Could we make it easier for people to go through a similar experience based on the knowledge that we had gained through our painful journey with cancer, and that’s where the idea for My CareCrew came about.  So, we started talking to other friends who had cancer.  We started to talk to other patients that we didn’t know that we just wanted to learn more about their experiences to see what we had experienced at friends helping each other.  The more we talked to people, and we spoke to hundreds of patients by this time, and caregivers, the more we heard consistent pain points across our stories, those concerned asking for help.  We have a hard time asking for help and offering help, when and how do you offer help, is it enough, is not enough, sharing updates so you don’t have to tell your story over and over again and then the fourth one and I know it sounds silly, but the idea of gifts and receiving gifts that one might need or enjoy at the time.  For example, I have a friend who is going through cancer, and she just absolutely hates getting flowers because flowers eventually die and at a time like this, she doesn’t like the optics of dying flowers.  In the app that we created, we try to address those four pain points, and again, they are asking for help by the patient, the offering of help to the patient, the updating by the patient to friends and family and creating wish lists, and the managing of gifts received by the patient.

BM: Paoola, I want to go over each one of these pain points with you so that you can elaborate on them, but if I am hearing you correctly, it sounds as though for each one of them, there is a right way and a wrong way to approach each pain point, there may not be a one size fits all right way, but that there is a right way for each patient.  Is that fair to say?

PS: Absolutely.  One of the things that we wanted to do was take the onus off of the patient in terms of asking for help, and one way was that if we could figure out a way for friends and family to offer help in a way that the patient could accept or decline types of help, so that they get the help they need.  What if on the app we are able to have friends and family share all the way they can help.  For instance, I could say to you, Bruce, I don’t know what help you need, but I will send you little offers of help that say I can do this or that, and then you get to pick, yes, I need transportation, no, I don’t need meals.  This makes it easy for the friend to say I can help in these ways, you tell me what is best.  So, the patient doesn’t have to think about all the things they need help with.  That’s one way that we take the onus off of the patient, so they don’t have to think about what they need help with.  One of the things we found out when talking to patients is that they were so overwhelmed with the stress and anxiety of things, that a friend didn’t always know the answer to the question, “How can I help you?”  Many times, a patient doesn’t know right away how they can be helped.

BM: You’ve addressed the asking for help space in this.  Let’s talk some more about receiving help.

PS: That’s an interesting one because I know for me because receiving help was hard.  I usually rejected help because for me I felt like if I was no longer to do these things that it was a sign of weakness in that moment; and I see right now and I know right now that it was absolutely not a weakness, and there will be a point in our lives when we will all need help, and it’s okay to receive the help.  So, my number one advice for somebody who is going through that situation, is if somebody offers you help and it is help you need…take it.  You are going to need the help, you are going to need the time, that extra support so that you have time to heal and to feel better and to recuperate from whatever treatment you are going through.  I don’t know if I have the magic answer as to what is the best way to receive the help, but my number one would be to accept it.  It doesn’t make you a weak person, it doesn’t say anything negative about you.  It just means that you are in a situation in which you need help and move on from that. 

BM: Sharing updates with friends.  I can see how this could be a thorny area.  Nobody wants to have provide a long line of updates to others and this is an area in which the internet, e-mail, social media, I am guessing can be a major asset of getting this information out, but doing it in a way that involves the least amount of stress.  So, if you would, Paoola, tell us a little bit more about this managing the sharing of information with friends and family.

PS: One of the things that we learned in the process is that we had different groups that would get the information in different ways.  In other words, who would hear the sanitized version of the story and who would get the highlights.  You have different groups because you have different levels of intimacy with people and how much you share and what you share.  In the CareCrew app, what we wanted to do was, we wanted the ‘journal’ piece of the app to be something that you could keep to yourself if you just wanted to work through things or you could share it with specific people or you could share it out across your social media.  We made it flexible, so depending on who needs to know what and when, the app allows you to be as broad as you want or as specific as you want in terms of who you want to share updates with and with whom you want to share.

BM: We’ve talked about three of the four pain points that you have referenced.  The other one is this notion of managing gifts.  From a distance, as you said, that may seem to be insignificant, but you bring up your friends and receiving flowers that are perishable, those are not good optics for anyone battling cancer.  That said, Paoola, elaborate a bit on the idea of receiving gifts and for lack of a better word, managing the reception of these gifts.

PS: The other thing that we wanted to figure out how to optimize was, if people are going to give you gifts, then how could they give you gifts that you need the most.  Talking to another patient when we were going through our discovery phase, I remember she said she didn’t really need gifts, but she really could have used a walker, so she didn’t have to pay for it because insurance didn’t cover it.  So, if she could just let her network know that she didn’t any gifts, but she did need a walker or she did need a wheelchair or she just needed company to go for a walk because she cannot do that by herself.  We think it would be great if the patient could get the items they really need.  In some cases with some of the patients we have talked to that are currently using the CareCrew app,in terms of needed gifts, some people are putting in grocery items, some are putting in healthcare items.  It gets away from the idea that the gift is a novelty and more that it is something the individual really needs to make their experience easier.

BM: Paoola, we are going to move closer to wrapping this up, but we have referenced your site, your support group, CareCrew.  If somebody wants to learn more by going to the site, what is its address?

PS: You can find us at MyCareCrew.co, not .com, or you can find me on LinkedIn, Paoola Sefair and my direct details are there.

BM: You have gone over these four critical pain points.  With a little more specificity, address how CareCrew can help somebody who needs the directions you can provide.

PS: One of the main ways we do that is through the free My Care Crew app that we launched last year that is available in the Apple and Android store.  So, it is just a matter of downloading an app, registering, setting up the account and then once you set up an account, you can, you would invite the people that you want to be part of your private, inner bubble, so you send them, via the app or via e-mail a message.  Then that person is alerted that you want to invite them to your care group.  Once they accept, they join your care group and you can start communicating via the app and you can use all these features we talked about, within the app. 

BM: And if there is information exclusive of interacting you that one can get from your website? 

PS: Yes, so in our website, there are blogs people can check out.  Our primary focus is going through the emotional aspect of dealing with cancer or being a caregiver, so in our blog section, we have many tips and ideas and suggestions of how to go about navigating cancer as a patient, how to support a cancer patient if you are a family or friend and the same for how to support caregivers as they are going through that experience.  So, lots of content on our website.  On our social media presence, I focus on providing bite-size tips on how you navigate this experience.

BM: Paoola, thanks very much for lots of great information and for somebody listening or watching, if you need a little help addressing that emotional piece of that cancer journey and make no mistake, that is a part of it, this is a great place to go.  Paoola Sefair of Amsterdam, The Netherlands, thanks very much for talking with us, thanks for joining us on Cancer Interviews.

PS: Thank you so much, Bruce, I so appreciate it.

BM: And as we like to remind you, if you or a loved one are a cancer journey, you are not alone.  There are scores of people like Paoola, who are there to provide help to make the cancer journey a bit easier.  So, until next time, we’ll see you on down the road.

Additional Resources:

Support Group: My CareCrew  www.mycarecrew.co

SHOW NOTES

TITLE: Paoola Sefair, Cancer Patient Advocate – Amsterdam, The Netherlands

Once Paoola Sefair survived papillary thyroid cancer, she wanted to help others.  She tells the @CancerInterviews podcast learned from her own cancer journey that the journey includes an emotional piece that often goes unaddressed.  That’s when she co-founded My CareCrew, a support group featuring a free app that enables cancer patients, caregivers and their family and friends to craft a personalized care plan with an eye toward making the cancer journey’s emotional component go as smoothly as possible for all concerned.

Additional Resources:

Cancer Interviews: www.cancerinterviews.com

My CareCrew: www.mycarecrew.co (not ‘.com’)

Time Stamps:

02:03 Paoola first noticed she had a problem when she began to have swallowing.

03:06 How she reacted when diagnosed with thyroid cancer.

04:10 She later realized her cancer journey included an emotional piece that she ignored.

04:52 Names the toughest part of her thyroid cancer treatment.

06:03 Said her recovery from thyroid cancer was bittersweet.

08:15 Paoola recalls what inspired her to help others.

10:25 Says there are big challenges in terms of offering and receiving help.

12:16 Although different for each person, there is a right way to offer help to a cancer patient.

15:05 And although different for each patient, there is a right way to receive help.

16:45 Paoola says there is a skill for how a patient manages informing others about their cancer journey.

18:45 Advice for a cancer patient on how to manage receiving gifts.

KEYWORDS (tags):

cancer

thyroid cancer

cancer interviews

cancerinterviews.com

papillary thyroid cancer

bruce morton

radiation treatment

paoola sefair