Tessa Parry-Wingfield survived Ocular Melanoma | Eye Enucleation | Uveal Melanoma | Monocular Vision

DESCRIPTION

While jogging in 2023, Tessa Parry-Wingfield felt an unusual sensation in her left eye.  It wasn’t painful but merited medical attention.  She was seen by three doctors before learning she had ocular melanoma, a form of eye cancer.  Because of the particulars of her diagnosis, she had to undergo an enucleation, the removal of her cancerous eye.  With an acrylic implant taking the place of the cancerous eye, Tessa had an enormous amount of learning ahead of her, most notably what is known as monocular vision.  Amazingly, Tessa has adjusted to her limited vision.  She has resumed running and hiking and driving a car.  Her future includes writing a book and climbing Mt. Kilimanjaro.

Tessa was jogging along the River Thames in London when she felt something was wrong with her left eye.  She went to see an optician thinking she needed to change her prescription regarding her contact lenses.  However, upon checking out Tessa’s eyes, the optician could see something was wrong, perhaps an astigmatism.

Lacking the necessary equipment for more in-depth scrutiny, the optician sent Tessa to an eye hospital, where they performed various x-rays and scans.  When one of the x-rays of her left eye was held up for observation, half of it was black.  Her care team thought Tessa had a form of eye cancer known as ocular melanoma, or, uveal melanoma, a tumor in the eye.  She was next sent to see an ocular oncologist, who swiftly confirmed the diagnosis.

Many patients diagnosed with ocular melanoma have more than one treatment option, but in Tessa Parry-Wingfield’s case, the oncologist performed more scans and tests and immediately told her she would need to undergo an enucleation, the removal of her left eye. 

Tessa was under anesthesia for the 90-minute procedure.  It resulted in her getting a temporary prosthetic eye, eventually replaced by an acrylic implant, which she has to this day.

She had to do a great deal of learning to go through daily life with one functioning eye, but that is exactly what Tessa has done.  She has resumed running, hiking and skiing.  She thought it would be a year or so of adjustments before she could drive a car, but her vision tests went so well that, three months after the procedure, her oncologist urged her to get behind the wheel.  Without a left eye, she says she has to look a little farther to the left than she was used to before her diagnosis, but she is now quite comfortable driving a car.

Through her cancer experience, Tessa Parry-Wingfield says she has surprised herself by learning how tough and resilient she can be.

Additional Resources:

Tessa on Instagram: @seeing_life_clearly

Tessa’s website: https://www.tessa.parry-wingfield.com

TRANSCRIPT

Bruce Morton: This is the @CancerInterviews podcast, and I’m your host, prostate cancer survivor Bruce Morton.  Ocular melanoma is a form of eye cancer.  Our guest on this episode survived ocular melanoma, but in so doing, paid a heavy price, namely the removal of her left eye.  She is Tessa Parry-Wingfield of London, United Kingdom, and she has quite a story.  Here she is, and Tessa, welcome to Cancer Interviews.

Tessa Parry-Wingfield: Thanks for having me, Bruce

BM: Before we get to your cancer journey, Tessa, we would like to know about your life away from cancer.  If you would, tell us about where you are from, what you have done for work and what you like to do for fun.

TPW: As you said in the intro, I live in London in the United Kingdom, in the southwest of London in a really lovely green area, which is not what you think of when you think of London.  I run a global communications consultancy, much of which is in the Middle East, and I am a former journalist, spending a decade in broadcast newsrooms.  For fun, it is mostly fitness kind of stuff.  Future plans include climbing Mount Kilimanjaro.  I like skiing, hiking, running, that kind of stuff. 

BM: Tessa, for all of us diagnosed with cancer, there was that point in time in which we noticed something wrong with our health, and that led to a sequence of events ultimately resulting in a diagnosis.

TPW: It was not very dramatic.  I did not have that archetypal cancer story.  I didn’t have any pain, nothing that demanded immediate medical attention.  It was very sudden and it was really hard to describe.  I was out jogging one day along the River Thames.  It was day like no other.  I just felt there was something abnormal with my vision.  It wasn’t as if I couldn’t see, or anything like that, just that something was a little off, but I am very short-sighted, so I assumed I needed to get my prescription with my contact lenses tweaked.  So, I went to optician a few days later and said I need a little prescription.  Because she said there was a possibility of an astigmatism, she looked into the depths of my eyes, and that is where they could see something was wrong.

BM: And from there, what led to your diagnosis?

TPW: At a normal optician, at least here in the UK, they don’t have the type of equipment that they would need to check something like this, so, I had a pea-sized tumor hiding in the back of my eye.  It was pressing on the lens of my eye as I was running, so that was quite a change.  They thought maybe it was a freckle within the eye, which lots of people have and wouldn’t even know about.  They sent me to a suburban eye hospital, which is where they did various x-rays and scans, where one could see as clear as day there was something very sinister in my eye.  When they placed the x-ray on the wall of my left eye, half of it was black; but even in an eye unit that specializes in all things eyes, they hadn’t heard of what was about to be my diagnosis.  They’d heard of it, but they hadn’t really come across it because it is that rare.  So, they said they couldn’t diagnose me, but they thought I had something called ocular melanoma, or uveal melanoma, which is an eye cancer, a tumor within the eye.  They also said I needed to see an ocular oncologist.  I had never heard of any of these words before, even though they are quite easy to work out.  I had never heard of ocular melanoma, ocular oncologist, things like that, but I was swiftly sent to one of the top ocular oncologists in London, although there are only a few.  That’s where I received my diagnosis of ocular melanoma.

BM: At that time were you that you were going to lose an eye, or did you have treatment options?

TPW: It was all very quick.  No options for me.  There are options if you are diagnosed with ocular melanoma; that’s just if the tumor is sizeable and causing problems.  You can have proton beam radiation, which is where they actually beam radiation into the side of your eyeball.  That’s not nice, either, but it is a way of saving the eye.  There are other options for people.  Not everyone diagnosed with ocular melanoma has to lose an eye, but for me that was the only option.  The ocular oncologist did more scans and more tests, called me back in and said then and there, that removal of the eye, known as enucleation, a really horrible word and not one you would want to hear, and that procedure was booked for two weeks later. 

BM: By the way, we hope you will find time to like and subscribe, and if you click on the bell icon, you will be notified the next time we post an interview.  And we want to remind you Cancer Interviews is not a source of medical advice.  If you seek medical advice, please consult a licensed health care professional.

Tessa, quite obviously for anyone diagnosed with cancer, there is a substantial physical piece, but just from a mental and emotional standpoint, how did you deal with the notion of losing an eye?

TPW: It was utterly terrifying.  To hear the word ‘cancer,’ is completely horrific.  Your whole world is turned upside down, but with the double whammy of losing an eye, cosmetic and otherwise is just a huge part of your life.  The eyes are a way in which we communicate.  They are only dubbed as ‘windows to the soul,’ things like that.  What it meant was, I knew it was a quick turnaound after the procedure and I couldn’t hide away while I was recuperating and getting my mind around what had happened because that would have meant literally locking myself behind doors, which I didn’t want to do.  So, I had to be quite open with people about what had happened.  I did have some grace period and wore very big, very dark sunglasses, fortuitously at a sunny time of the year in 2023.  But after the sunny weather went away, I had no choice but to explain what had happened and had to look people in the eye, with just one eye.  It was called monocular vision, understanding that you are only seeing from one side.  I had an interim prosthetic eye, which wasn’t great and then my permanent prosthetic.  To begin with, it is very challenging, but when you are in shock mode, it is amazing what you can do.  It helps you get through unimaginable stuff, the really, really difficult stuff.  I cannot sugarcoat it.  It was incredible terrifying.

BM: You have mentioned the things that were going to be involved in the procedure, but let’s talk about your experiencing in real time.  As it happened, what was it like going through that procedure, or were you knocked out for the whole thing?

TPW: Oh, no, I was knocked out for the whole thing, but interestingly, they gave me a choice because during the COVID pandemic, they had learned obviously because they had to, they had learned how to remove an eye under sedation.  They had never done that before, but they were forced to carry on with the surgery.  Otherwise, lives would be lost.  So, doctors learned they could perform the procedure under deep sedation, but still keep someone conscious effectively; and they actually said it wasn’t a big deal.  I couldn’t imagine being cognizant of what was going on as I had my left eye removed, so I asked to be knocked out in full.  The surgery is only an hour and a half.  It is relatively straightforward, which is kind of crazy when you think about it.  You would think it would be quite intricate.  Parts of it are.  They had to sew an implant, an acrylic implant into the socket of the eye and they attach the eye muscles onto that so that you can get some movement still with the prosthetic, and the acrylic implant which goes on top of it, but allows for movement.  Pretty rapid shock and awe surgery.

BM: Tessa, this is a question that may require a great deal of unpacking, but after the procedure, what sort of learning and unlearning and adjusting did you have to do?

TPW: Oh, huge amounts of learning.  I chose to try and not learn too much so that I didn’t scare myself.  I didn’t consult Dr. Google.  I was warned by my specialist that the data can get skewed online and suggested I come to him instead.  But, learning?  The biggest one is learning monocular vision because it takes a little while for your brain to rewire.  Things like pouring hot water into a cup of tea is difficult because you don’t understand the distances, the same for getting your glass underneath the tap.  It takes a few weeks or months, and for some people it can take a whole year.  These days I can run, I can ski, but it takes time, you have to learn how to do things with a slightly different perspective.  You have to learn how to be kind to yourself because  your face has changed in a big way.  As for unlearning, I have to unlearn how to be a journalist.  I had to unlearn how to be inquisitive.  Some people want to learn every last detail of their cancer journey.  Me, I had to step away from investigations about my cancer because I couldn't cope mentally with what I might discover.

BM: You have mentioned some of the things that you can still do, post-treatment, like skiing and running, and as a retired runner, I am impressed that you can run with only one eye, and you have mentioned one thing you can’t do, namely your inquisitiveness.  I almost hate to ask, but what else can you not do after your treatment?

TPW: Oh, there is nothing I can’t do.  I can’t fly an airplane, which I never did and never want to do, anyway.  At the beginning, I assumed I would never be skiing again, I’ll be never doing this or never doing that.  I have made it my mission to turn that on its head and do everything that I have always wanted to do.  Shortly after my treatment, I did a half marathon, which wasn’t easy because I have a blind spot to my left.  People can pop out from behind you or to the side of you, so that was challenging.  I thought I wouldn’t be able to drive for a year.  I thought I would be off the roads for a year at least, but my doctor after three months, urged me to get back on the roads quickly; otherwise, you will lose the confidence to drive.  I just have to look farther to the left than I used to.  It’s just about adapting and not about giving up anything.

BM: We asked you about what you had to learn in terms of adjusting to post-treatment life, but I want to trot out the operative word ‘learn’ one more time, and ask from a 30,000-foot view, even though you say you can’t fly a plane, through this experience, what have you learned about yourself?

TPW: I think I have learned I am far more brave, far more resilient than I ever realized I was.  I am not inherently brave at all.  I don’t like roller coasters, I don’t like great heights or that kind of stuff, but when you are forced to go through something like this, it makes us tougher than we ever had any idea that we are.  That has been a real positive, actually.  So, I have learned that about myself.  As weird as this may sound, I have learned that not all aspects of the cancer diagnosis are bad.  A big chunk of what has happened to me has made me into a better person.  I understand what matters, and what matters to me and my family, what brings me joy, what not to waste time on.  It has made me more determined in terms of my business, and made me grab life by the horns.

BM: You referenced being a better person.  Let’s talk about that.  What are some things that you do for others based on your cancer experience?

TPW: I am not saying I have turned into a saint.  If anyone has a cancer experience, they are welcome to contact me.  I think the main thing is to educate other people to know what to do and what to say around people with cancer, so that has been very important to me and share that knowledge with others because I think behavior around cancer is very stereotypical and based on historic reactions because people generally don’t know what to say.  It’s nobody’s fault.  We’re just not ‘in the know,’ and there really isn’t any guidance on how to speak to someone who has cancer.  People need that information. 

BM: Tessa, you sound you are not in the camp of those who don’t know what to say.  It sounds like you do know what to say, and based on your experience, there is no shortage of pearls of wisdom you have to share with others.  That makes a perfect segue to the question with which we usually conclude.  Imagine you have a private audience with someone who has just been diagnosed with ocular melanoma.  This person may have lots of questions and you lots of information; but out of all the things to share with this individual, if there is one thing you would want to make sure this person remembered, what would it be?

TPW: Just one thing?  I would say that it will be okay, that you will get through it, that you will get better and life may even be better afterwards. 

BM: Which could be very uplifting for the recipient.  Tessa, we are going to wrap up now, and we want to thank you for a wealth of information, and speaking of information, before we end, are there any links that somebody can access to get to some of the information you have?

TPW: I have an Instagram account, which is @seeing_life_clearly, so that would be a good place to start.  I also have a website, which is tessa.parry-wingfield.com.  Both are good sources of information. 

BM: Tessa, thanks for the information you have shared with us, and in advance, thanks for the information others can access through your writing and all of its many facets.  One more time, thanks for being with us on Cancer Interviews.

TPW: Thanks so much, Bruce.  Thanks for having me on. 

BM: And we want to remind you as we always do when we wrap up, that if you or a loved one are on a cancer journey, you are not alone.  There are people out there like Tessa who have information that can make the cancer journey just a bit easier.  So, until next time, we’ll see you on down the road. 

Additional Resources:

Tessa on Instagram: @seeing_life_clearly

Tessa’s website: https://www.tessa.parry-wingfield.com

SHOW NOTES

TITLE: Tessa Parry-Wingfield, Ocular Melanoma Survivor – London, United Kingdom

While jogging in 2023, Tessa Parry-Wingfield felt an unusual sensation in her left eye.  It wasn’t painful but merited medical attention.  She was seen by three doctors before learning she had ocular melanoma, a form of eye cancer.  Because of the particulars of her diagnosis, she had to undergo an enucleation, the removal of her cancerous eye.  With an acrylic implant taking the place of the cancerous eye, Tessa had an enormous amount of learning ahead of her, most notably what is known as monocular vision.  Amazingly, Tessa has adjusted to her limited vision.  She has resumed running and hiking and driving a car.  Her future includes writing a book and climbing Mt. Kilimanjaro.

Additional Resources:

Tessa’s website: https://www.tessa.parry-wingfield.com

Time Stamps:

02:23 Tessa recalls her vision acting up while she was out for a jog.

05:26 When seeing her third doctor, she was diagnosed with eye cancer.

06:13 Said her only treatment option was to lose her left eye.

07:18 How she dealt with the idea of proceeding with one eye.

08:53 Tessa describes life with monocular vision.

09:53 Said she chose to under anesthesia for her surgical procedure.

12:50 Said being without an eye required many adjustments.

15:55 Is asked what she can no longer do now that she has one eye.

18:41 Tessa reveals what her cancer journey has taught her.

22:37 Her advice to others diagnosed with ocular melanoma.

KEYWORDS (tags):

eye cancer

ocular melanoma

uveal melanoma

eye enucleation

eye removal

tessa parry-wingfield

proton beam radiation

monocular vision

prosthetic eye

acrylic implant