A patient with head and neck cancer highlights the importance of a strong support system throughout the time he was recovering from surgery.
A patient credits his wife and caregiver for not only being a source of support while recovering from surgery for his head and neck cancer, but also for urging him to seek second opinions for his diagnosis and treatment options.
Ashwin Sabnekar was diagnosed with head and neck cancer in 2018, for which he underwent surgery to remove the cancer and reconstruct his tongue. His diagnosis didn’t occur right away, despite having a sore on his tongue that wouldn’t heal. Ashwin’s wife, Becky, motivated him to get it checked out the first time, during which he had a biopsy that came back negative, and to get it checked out again a couple years later after realizing the wound wasn’t healing properly.
Ashwin and Becky spoke with CURE® about their experiences as a patient and caregiver, the importance of self-advocacy and why having a supportive team on their side is so critical.
Ashwin, how your cancer journey start?
Ashwin: My journey with cancer started I’d say about 2014, 2015, around that time. I noticed a sore on my tongue, and it wouldn’t go away for many months. My wife insisted that I go to an oral surgeon and get it checked out, and I did that. The oral surgeon did a biopsy and it came out benign. So we thought there was nothing to worry about.
Fast forward four, five years later, 2019, it got worse. It got to a point where it was hard for me to eat. It was just bothering me a lot. So my wife told me again and she said it’s time for you to go get it checked out by an oral surgeon. And I got the news that it was (head and neck) cancer.
I had a feeling, obviously, but it was something that I did not expect. I’m very disciplined about my food and myself, so I never expected that to happen, but it did.
We had to postpone all of our grand plans and put our life on pause. Now we have to go in and figure out what this means. And unfortunately, there wasn't a whole lot of information out there on the internet and talking to people. … So it was something that was a horrible, really rough point in our lives.
But we went and sought opinions from three surgeons. To our surprise, the treatment that was offered by all three surgeons was very different. But we settled on a surgeon that we felt had a more conservative approach.
The surgery itself was almost a full day of surgery, about eight hours or so. The procedure included the removal of cancer, but also included reconstruction. So that's why it was a really long surgery.
The recovery following (the surgery) felt even harder. I was about eight days in the ICU. So it was a long eight days, with a lot of lows during the day. It was not just the physical aspect of what I was going through, but there were so (many) emotional things that were going through my mind: My future, my family's future, my wife's future, my kids’ future, relatives, it was a lot of things going on in my head.
What was really important was to look around the room and see my wife sitting next to me day in and day out, every single night. She was just sitting on a little chair, taking care of me. That meant a lot. That gave me that emotional support. And it helped me go through the recovery process.
Once I came home, I realized that it's not done yet, because I still have a lot of other things to take care of from my health perspective, including physical therapy and things like that. So it was a really long journey. But something that I did not expect in my life.
Becky: Well, it was really tough. Just looking back, I think we got this false sense of security when he originally had that biopsy done in 2015 and it was negative. So even though that wound never really healed, it felt like, OK, we already got it checked. So there's nothing else to get done, this is it. So I wish I would have been more persistent … instead of waiting three, four years later to push.
What advice would you give to other patients who may think that the diagnosis they received from a doctor may not be what's going on in their body?
Ashwin: I think it's always good to get yourself aware of your situation. Knowing that not everybody goes through the same situation in their lives with cancer, not everybody's cancer is the same. So it's very important to get that personalized treatment. And seek more than one opinion, because in my case — I can tell you from my experience — three surgeons gave us three different opinions on what the treatment should be.
Becky: The other thing, too, is that some doctors may be dismissive. They may say, ‘It’s not really a big deal. Keep an eye on it, and if it doesn't get better, then let us know.’ But you as a person, you know if it's something else or if it's not normal, so follow your instinct. If you're not really connecting with that doctor, go ahead, it's OK to find another doctor. And it’s not because one doctor is not competent. But it's just more like you just want to feel a connection maybe with somebody else.
Becky, how did you manage to keep it together while being a huge sense of support for Ashwin?
Becky: It was so tough. I was just more in auto mode at that point, not necessarily realizing everything that is happening. And that, too, is a little bit of a roller coaster. And you don't know what to expect next. So it was really, really, really hard. And then also feeling that I don't want to complain, how am I going to complain to my husband? How am I going to tell him that I’m actually scared, I don't want to tell him that and I just want to be more in a stronger position, reassuring that everything is going to be alright. We’re a team, we can do this, even with the kids, we can do this. But it is very difficult, very difficult.
How critical is it to have such a strong support system and caregiver during your journey? And what advice would you give to caregivers?
Ashwin: A caregiver is probably one of the biggest pillars of sense for you during those times. As I mentioned before, it's a really low time in your life. You are both physically and emotionally depleted at that point. And you need all the support that you can get. In my case, every 15 minutes, I needed some kind of help, because I was going through so much pain and other things. Even though you are in ICU, you have a nurse, (but) it's not fair to expect them to be there because they are looking at other patients as well. And that's when my wife, as a caregiver, came out to be very critical, helping me out every time when I needed help.
My advice to caregivers is, be there and get the help of community as well to take care of other things that are going on. Like in our case, we had little kids, my relatives jumped in, they took care of them while my wife was with me. So take care of the patient, obviously, but also seek help with your relatives and community so that you can properly take your role as a caregiver.
Ashwin, where are you now regarding your cancer?
Ashwin: I am cancer free as of now. I am healthy and I feel reenergized after the cancer, after what I went through, to be even healthier and more disciplined about what I eat, what I do. So it's definitely something that has changed me a lot. It has impacted me a lot. And I feel like it has definitely reenergized me.
This transcription has been edited for clarity and conciseness.
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