What matters most?
Megan
Megan was born and raised in Norwich. Whilst working at Aviva in pensions and retirement at the age of just 26 years old she sought treatment over what she thought initially was a minor ailment, the reality was far more shocking.
“I first knew about my ocular melanoma as a little flashing light in the corner of my eye, which I ignored, for around two weeks. I thought it might just be a migraine. Then I called an optician who told me to go to A&E. As soon as A&E looked at it they referred me to a specialist. In Sheffield Hospital where they have specialists in ocular melanoma, they do tests where they dilate the pupils and they can dilate all the arteries and all the veins in the eye. Through different photographs and all sorts of tests they are able to determine whether it is actually a cancerous tumour that they are seeing or a benign tumour.” Megan stressed to us the importance of attending regular eye tests. Ocular melanoma can remain symptomless and often cannot be discovered before advancing to the stage where it is beyond treatment.
Some doubt remained and Megan had to wait to see the results of her diagnosis. “Originally they were almost certain that it was ocular melanoma based on the characteristics that it was showing, but they weren't 100% sure because there's a benign tumour that looks very similar to the way that my tumour looked. We were in limbo for a while. They treated it initially as if it was ocular melanoma. I had some treatment of photodynamic therapy, and they knew if it responded to that, it would be ocular melanoma and not benign. It did initially respond to the treatment really well, it shrank quite significantly. So that's when they were able to confirm my diagnosis. Then unfortunately, it stopped responding to the treatment and I went on to another treatment called stereotactic radiotherapy, which is why I'm now blind in my left eye. It's a lot more intensive.”
Coming to terms with a diagnosis of stage one ocular melanoma was tough on Megan, she struggled to comprehend the news initially. “In the very beginning I didn't understand the severity of the diagnosis at all. Of course, I knew that a cancer diagnosis is bad, but when you look at the tumour it’s a size of millimetres, it's tiny. In my mind I imagined you can treat it and move on unscathed. I was naive, very naive. I didn't understand the volume of it.” As the severity of the diagnosis began to hit home there was still further information to discover about ocular melanoma. “They kept telling me initially ‘we found it really early’ and kept reiterating how small it was. I wasn't aware for a long time what that meant for me. It wasn't until I started doing research myself that I found the charity OcuMel where I learned more. They are very good at doing their own research and being their own advocates. Through them I learned I had around a 50% chance of this spreading to my liver. I learned that if it does, it immediately becomes terminal cancer. Then in that moment, I was like ‘okay’, this is much more serious than I had initially imagined.”
Learning the severity of ocular melanoma retrospectively after her diagnosis was unusual for Megan. “I think it was quite a shock to learn how serious it was and I don't know if the way that they handled it was the right way. Although I think at the time it may have been to save me from living in a state of anxiety, maybe they thought ‘she’s not going to metastasize so maybe this is something she doesn’t have to worry about. The tumour shows characteristics that it is less likely to metastasize another tumour and it’s small so maybe we don’t have to worry her about this yet’. To be honest like a lot of the initial conversations I had with them, it’s all a blur. I am so glad for OcuMel provide patient literature to educate people, because consultants vary so vastly on what they feel is the wrong or the right thing to do. It’s a difficult balance but I think you should be able to access the information if you want to look into it from a reliable source. I know from my family there were some family members that didn’t want to think about it at all. I think it took them time to open up to the news and do it in their own time. Sometimes it’s like that for patients too. It’s a difficult balance but it was intimidating to find out.”
Twelve months ago Megan was given the devastating news that the ocular melanoma had advanced to stage four and spread to her liver. The cancer would now be terminal. “I was having MRI monitoring at the time, every six months. The MRI started showing little dots in the liver but they weren't able to confirm the severity, because they were so small. So again, it was living in uncertainty of not knowing what you had to deal with. Eventually, they were able to order a biopsy, which confirmed that it had spread to my liver.” Megan continues with treatment to try to keep the melanoma contained for a time. “I’m very lucky, in terms of my treatment it could be a lot worse. I've been on this treatment for a year now and in the beginning, for a long time, I was very poorly. I was unrecognisable, my face was swollen, my skin was peeling off, I was unwell. It’s only very recently that I have started to feel more normal again, we’ve adjusted the medication; removed a lot of the pre-meds and now my main symptom is just fatigue. I'm a lot more tired than I ever used to be. I struggle to learn what it's like to be in my new body because I want to do the things that I used to do, but even cleaning the house now can knock me out for a couple of days. I’m a lot more tired and have a lot of pain in my stomach due to the treatment but although I get nausea I don’t vomit or anything.”
The treatment Megan is currently receiving is a type of immunotherapy that is given weekly. “My last MRI showed that it's working as well as it can, it's not shrinking anything, but I’m stable. Although I’m stable the cancer can’t be cured. It just controls it for as long as possible. The treatment attacks the melanin in your skin, the tumours are black so are full of melanin, you will notice on my hands, my face, even my feet and freckles, that is where it's attacking all of the pigment in my skin. By doing that it learns to attack the tumours as well as reducing them hopefully, as much as possible.”
Megan is now able to receive same-day treatment as an out-patient but this has not always been the case. During the COVID pandemic she had lengthy hospital stays and due to the restrictions was not able to see visitors for long periods. “I really struggled with the hospital stays, because I was a lot more poorly than I thought I was going to be. I was alone because of the regulations at the time. It was just me alone, without visitors. I was on a ward where a lot of the people there were receiving end of life treatment so they were very unwell. Originally, I had my own room and that was nice but very quickly I was put on the ward and was so unwell I was struggling to even text family and friends. It took a lot of motivation to go back into the hospital after the treatment to be honest, it took around five or six weeks before I began to feel an improvement and by that time I would be back in again. The cycle would repeat and it was a shock to my system.”
Due to the rarity of ocular melanoma the treatment Megan is receiving is difficult to get hold of, or be eligible for, depending on blood type amongst other factors. Due to a compassionate use programme Megan is receiving the treatment but this is not guaranteed. As she explains “the difficulty is it's given on compassionate use. At any point that can change. The uncertainty is difficult to cope with but I don’t think about it too much because I'm so focused on the next steps. When this treatment doesn't work, I want to know that I have options. If they come to me tomorrow and say ‘you can no longer have this treatment’, I’ll just focus on ‘okay, what do I do next?’ I can’t focus on the uncertainty of tomorrow, I can just focus on what next seps I will do now.”
Prior to and after her terminal diagnosis Megan had to break the news to friends and family. This has been tough and some have found it easier to deal with than others. “I really struggled with telling people at first when it was primary cancer before it was terminal. I didn’t actually know the words to say. I remember when I first told one of my aunties, I must have been on the phone for about half an hour chatting before saying ‘oh yeah, by the way, I have cancer’. Then when it became terminal I got very matter of fact. When I talk about it I try to focus on the positives, which sounds so silly when you’re talking about terminal cancer, but there are positives like the fact they found it really early and I’m eligible for treatment. My oncologist worked fast on getting the treatment, from diagnosis and confirmation to treatment was a week. When I tell people the news I say ‘yes, this is happening but these things are in place’, and can tell them the plan. I try not to leave them with uncertainty. There’s never a right way to say these types of things to people, and it takes some people longer to digest and understand than others.”
Megan tries to stay positive regardless of her diagnosis, she is responding well to her treatment and remains looking forward. “With ocular melanoma around 15 to 20% of people wouldn't even make it to a year and because I’m in the ocular melanoma community, I see how many people we lose so frequently. The biggest positive is that I'm alive, which is something that a lot of people don't get to say. I also see more and more people defying the odds, people living four, five, six years after diagnosis, and treatments are progressing. It's hard sometimes to find those positives, but they are there. I'm able to have a perspective on what is important to me that I didn't have before. I value spending time with my family, being with my partner more, being more present with myself even in the time that I have alone. Taking things for granted is not as frequent as it was previously.”
Despite the positivity of response to her treatment, Megan must still make plans around her end of days as time progresses. “Upon diagnosis I was given a rough estimate of less than two years to live, it depends very much on how I respond to treatment and things like that, but I have now come up to a year. Two years is always very loud in my mind, it's very difficult to move forward from that regardless of how great the treatments are becoming. I’ve started doing end of life planning with my local hospice. We have things in place where I now understand better what is going to happen with my GP, community nurses and the hospice workers. I have a better understanding of what is going to happen when I do get unwell and eventually start dying.
These were very intimidating conversation for me to have, but ultimately, it made me feel better to understand. If you don’t understand, you paint an image in your mind and that is a lot worse than the reality of it. In terms of support and the environment that I’m going to be in, I have a good relationship with my hospice. I can feel more confident that when I do pass away, there is going to be a big support system there not just for my partner and my family, but for me.”
It is a brave step to have conversations about dying earlier in life but Megan sees the benefits of it after having to do it herself. “I do think end of life planning varies vastly from person to person. I think some people may struggle, once they've put their mind to thinking about it, focusing on living again, because that's very hard to do. For me, knowing that everything is organised, and knowing what's going to happen, helps me to not think about it so much anymore, I can push it away a little bit. I know when I do become weaker, that there's people that can help with equipment. I know exactly where the hospice is. I know what's going to happen, and in some ways, that is really scary, but in other ways, that is really comforting. I now know that the burden isn't going to fall on everyone around me. Prior to knowing that it was a lot more daunting for me, so I would encourage people to really think about how they feel about it and try not to shy away from talking about it. If you have a plan in place, it can also make the people around you feel more confident and more comforted as well. They then know that they're not going to have to deal with that all by themselves. It can be a very lonely and isolating feeling when you're dying so include people, you don't have to do it by yourself.
Often the fact that Megan has a terminal diagnosis can affect conversation with others as they find it difficult to know what to say to her. “I think it is difficult for people because I don't look unwell. Sometimes I feel like it's not actually happening to me, it's kind of surreal. It’s such an awful thing to think about, ‘my daughter, my partner, my friend is going to die’ and death is such a taboo topic anyway, that we all avoid it. Yet there are ways of dealing with it and I think when others see that I'm comfortable talking about it, it makes them a bit more comfortable talking about it. I will make jokes about it and I will not use fluffy language I will say ‘when I die’ or ‘when I'm dying’, and hope that it will make them then feel comfortable to approach me and talk about it. You do need to have realistic expectations of people as well though, just because I may be comfortable talking about it doesn't mean my partner or mum or dad are comfortable talking about it. You have to adapt to other people because they're grieving for the life they thought I was going to have as well as knowing they will have to eventually grieve for me not being here. It's very complex.”
Despite being up-front about the realities of the situation Megan still has difficulties that are almost unfathomable to think of. “My main concern is I have a sister who's just turned 10, and we haven't told her about my illness yet. That's because as much as I can talk my partner, or my mum or anyone else about dying, I can't bear the thought of talking to her about it. I think she has a deeper understanding than I realised, but I just cannot begin to fathom how to explain the situation to a child, especially when I'm her big sister. It’s something that a child should never have to comprehend. I just can't think about it, but I need to think about it because it needs to happen.” Often conversations surrounding death can depend on an additional perspective to help with the process. “That's where the hospice comes in, if I didn't take the initiative to talk about end of life, I wouldn't now have the hospice working with me on how to prepare myself to speak to my sister. There's so many benefits to doing it, even if it’s a very scary thing to do.”
Megan has begun to look forward at the memory she will leave behind in a world that she is no longer part of. “I find I do ask myself about how I want to be remembered, I want people to remember how I was, of me trying to be present as much as possible and trying to appreciate the things that I took for granted before I was ill. I want to be remembered when life becomes a huge rush, and things become too quick, and you're jumping careers, and you've got children running around. I want to remind people to stop and pause, put the phone down and take time with the people around you. I want people to think ‘hey, Megan has told me I need to slow down and look at what is around me’. I feel like we’re always striving for more, a bigger home, a bigger car, a bigger this and a bigger that but we forget to see what we actually have in front of us. We forget to be grateful for what is around us. I want to be a reminder of what we have.”
“What matters most to me when facing death is to spend the time that you have in the ways that you want to and not in the ways that you think you should be.” A lot of individuals often have bucket lists and feel like they need to cram the next forty years of activities into the next two years but Megan sees things very differently in her situation. “It can become overwhelming because you don't take that moment to actually stop and connect with the people around you. To me, what matters most is defining what your definition of success and quality time is, and not letting anybody else influence that. If you want to spend the next however long you have sitting at home with your cat and your daughter, do that. If you want to go travelling to every country in the world, do that, but don’t put a pressure or an expectation on yourself just because you are dying. You are still you. You are still the person you were before.”
A collaborative creative project
Ocular or uveal melanoma is a cancer of the eye. It arises from structures in the middle layer of the eye, the iris, choroid or ciliary body. There are approximately 600 new cases of ocular melanoma in the UK each year, making it a rare cancer. Unfortunately, around half of all patients with ocular melanoma go on to develop tumours in other organs, particularly the liver.
To learn more about ocular or uveal melanoma, click here.
Source: https://ocumeluk.org
OcuMel UK is a registered charity supporting those affected by ocular melanoma. They help patients and families by providing current and accurate information and emotional support via the website, helpline and online forums.
To learn more about OcuMel UK, click here.
Source: https://ocumeluk.org
Through the crowdfunding platform supplied by JustGiving, Megan has been able to raise over £80,000 to fund her cancer treatment. The chemosaturation treatment was approved by NICE in 2021 but is currently unavailable on the NHS so must be undertaken at a private hospital. Due to the incredible kindness offered by members of the public who heard Megan’s story through various media outlets Megan achieved her goal of £80,000 in June 2023.
Visit Megan’s JustGiving page click here.
You can read about some of the other people taking part in the What matters most? project by clicking here.
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