What matters most?

Dimitar

Dimitar first met his partner Megan when they were both working at Aviva in 2018. Six months later they were in a relationship. As young love blossomed, less than a year into the new relationship his partner Megan was given some devastating news, she was diagnosed with first stage ocular melanoma.

Dimitar had to support his partner through a time they could never have predicted. “In the first year and half after diagnosis it was all very blurry. I put a lot of stock into doing, rather than thinking, internalising and coping. I pushed emotion aside and thought ‘what needs to be done? Let's go, do we need to drive somewhere? Do we need to do this? Do I need to take care of that? Do you want me to research A or B, and speak to C or D?’ I didn’t face it at all until much later.”

Dimitar threw himself into practical solutions for immediate problems as a way to cope with the shocking news. “It was the only way that I thought I could get some control and power in a situation where it's completely outside of my control. As a partner, I think you feel helpless until you find ways to be helpful. I thought the best way that I could help Megan was to take action, take some form of semblance and be useful. I felt completely useless against cancer and it's not something I've dealt with before. I had absolutely no idea, I knew nothing about ocular melanoma.”

Feeling helpless, Dimitar struggled with the stress and anxiety of being a supportive partner but tried to remain positive for Megan. “I’ve always been a very optimistic person. I try to think, as we go through these things, ‘it’s all going to be okay’, trying to lean on hope and positivity.” Around a year after the initial diagnosis Megan and Dimitar were given the news they had been dreading; the cancer had spread to Megan’s liver and had progressed from stage one to stage four. The cancer was now terminal, Dimitar spoke to us and reflected on this awful time. “I thought ‘we will just do this for this for six months or a year and if we get through it, it's all going to improve’. Initially it was looking very good until it got a lot worse. It almost felt like a punch in the gut, because we were in a position where things were stabilising and we were considering and planning for the future. With the new diagnosis it felt like despite everything that we’d done and been through we would now need to find another level. I found it really hard to envision that in the beginning. I struggled. I felt like a punching bag. Everything was so topsy turvy, we were planning for a future and then all of sudden you’re thinking ‘but she has no future now’.”

Dimitar was thrown into the situation where more than ever he felt like he needed to show support to Megan, whilst at the same time coming to terms with the diagnosis himself. “I would speak to a couple of my trusted friends, not telling them the full picture of things because, of course, I didn’t really know at the time how to talk about it. I would tell them how I was feeling though so I had a little bit of support there. I also kept a strong sense of hope and positivity to take things forwards.” Staying positive was exhausting for Dimitar and he learned that he had to deal with the news himself as well as supporting Megan. “After some time I realised this is not a sustainable mental position to be in. I learned by opening up to myself and accepting how I felt about it. I was then able to share and talk to other people about the situation. I was able to start building support pillars, so that I wasn't by myself in this, or just me and Megan”

Dimitar was thrown into the situation where more than ever he felt like he needed to show support to Megan, whilst at the same time coming to terms with the diagnosis himself. “I would speak to a couple of my trusted friends, not telling them the full picture of things because, of course, I didn’t really know at the time how to talk about it. I would tell them how I was feeling though so I had a little bit of support there. I also kept a strong sense of hope and positivity to take things forwards.” Staying positive was exhausting for Dimitar and he learned that he had to deal with the news himself as well as supporting Megan. “After some time I realised this is not a sustainable mental position to be in. I learned by opening up to myself and accepting how I felt about it. I was then able to share and talk to other people about the situation. I was able to start building support pillars, so that I wasn't by myself in this, or just me and Megan”

Working through these problems both individually and together as an unbreakable unit with Megan, Dimitar has found new perspectives on previous feelings. “I now look at what’s most important with my time and her time. Instead of always doing what I thought was the helpful thing and taking action, being away and working, I’ve now calmed down significantly. I've put these things in the background and I've created an atmosphere around myself where I have people that understand and support a life of quality. I also have more peace, patience, understanding and slowness around me. Me and Megan are able to have as much meaning within our time together as possible because we won’t have that time in the future. A lot of people don’t think about the now because they think they’re immortal and have all those years left. They think ‘why would I worry about certain things at this stage?’ I now have to compact all that into now and it’s really difficult with the treatment that Megan’s on.”

Through extensive research, Dimitar and Megan made the decision to start on a drug trial through compassionate use. With ocular melanoma there is no standard treatment that works so through the help of OcuMel, Dimitar explored alternatives. “This treatment has only been around since 2019, it’s experimental but is the best option we’ve found for a treatment that can have a statistical elongation of life. The standard treatment for stage four metastatic ocular melanoma is very poor and the current chemotherapy that's available doesn't work.” Dimitar and Megan found out about the drug trial through Megan’s oncologist as well as via the education and literature released by Joe, the CEO of OcuMel, along with others. “I am constantly reviewing all the possible trials in the UK. I don’t have a medical background and so it involves me spending a lot of time trying to find the right information and educating myself about the terminology. The research is not as readily accessible as you would think and it completely depends on your experience with your oncologist and the relationship that you have with them.”

As time presses on both Megan and Dimitar have to face the future together knowing that one day they will be parted. The time they have in each other’s company is so precious and they cherish every moment they can spend side by side. “I live every moment in the present, I take time and celebrate every moment as much as possible. I am aware however that there will come a point in the future that Megan won’t be with me. It’s still difficult for me to talk about this stuff. I’m not anywhere near a stage of acceptance about the future but I’m getting better at thinking about it a little bit. Sometimes my mind goes into thinking about the future but sometimes it is very much in the present so it can be difficult to reconcile the two. Sometimes when I do think about a future without Megan it feels like I’m betraying us.”

As time presses on both Megan and Dimitar have to face the future together knowing that one day they will be parted. The time they have in each other’s company is so precious and they cherish every moment they can spend side by side. “I live every moment in the present, I take time and celebrate every moment as much as possible. I am aware however that there will come a point in the future that Megan won’t be with me. It’s still difficult for me to talk about this stuff. I’m not anywhere near a stage of acceptance about the future but I’m getting better at thinking about it a little bit. Sometimes my mind goes into thinking about the future but sometimes it is very much in the present so it can be difficult to reconcile the two. Sometimes when I do think about a future without Megan it feels like I’m betraying us.”

“We want to use as much of the time that we have loved each other to have meaning and for that meaning to be completely transcendent of her physical life or even mine. I want something that carries the essence of us, and of her, which will forever be with me. I would like to be free to be as bright as possible, so that to me means that in the present, it’s the only time I can shape that and take it with me.” Dimitar can sometimes find it helpful to store memories that he knows he will look back on with great joy sometime in the future. “I write things down and make voice notes on my phone so will say things before I forget them. ‘I noticed this today from her’ and ‘she said this’. I put those memories away, I’m not sure what I’m going to do with that information but I’m collating it.”

Dimitar and Megan have been fundraising for chemosaturation treatment, a brand new treatment for ocular melanoma. The treatment looks promising for its life extension qualities but comes at a price. “Chemosaturation, simply put, is a type of treatment that isolates the liver, cuts it off from the rest of the body using a medical device, and then saturates it with an agent that kills cancer cells. It can be done up to three, four, five, or six times. It's approved by NICE (The National Institute for Health and Care Excellence), but not funded by the NHS. Each treatment costs £40,000 so we didn't ever think that was an option because we thought that is completely outside of our financial grasp. We decided to look at options to raise the money and were in a position where we said ‘we have to give this a try’. We thought that if we succeed and managed to raise the amount we could try the treatment, if not we’ve tried everything that we could and fought tooth and nail for this.”

Advisors at Spire Southampton Hospital told Megan she may need up to three treatments to be effective. Dimitar and Megan set out on a quest to raise £80,000 for two treatments at £40,000 each. They very gratefully secured the first treatment through Megan’s family but still needed £80,000 for a further two treatments. Shortly after our interview Megan and Dimitar reached their fundraising goal so the treatment can now go ahead. Their next goal is to ensure they can fund additional treatments if required.

“We would like to thank you from the bottom of our hearts for all the support that you've given us, whether financial or not. For the kind words, dedications, and passion that you have shown us throughout the last six months and beyond. We would not be here today if it weren't for your support and your kindness. Thank you to everybody.”

Megan and Dimitar face an uncertain future together as Megan approaches the end of life. The time scale in which the cancer will take hold is still not clear but they are taking every action to prolong her life and cherish every moment that they have left of it. They travel the path towards an end together, hand in hand, enveloped by a love that will never end.

Click here to watch filmed interviews

Advisors at Spire Southampton Hospital told Megan she may need up to three treatments to be effective. Dimitar and Megan set out on a quest to raise £80,000 for two treatments at £40,000 each. They very gratefully secured the first treatment through Megan’s family but still needed £80,000 for a further two treatments. Shortly after our interview Megan and Dimitar reached their fundraising goal so the treatment can now go ahead. Their next goal is to ensure they can fund additional treatments if required.

“We would like to thank you from the bottom of our hearts for all the support that you've given us, whether financial or not. For the kind words, dedications, and passion that you have shown us throughout the last six months and beyond. We would not be here today if it weren't for your support and your kindness. Thank you to everybody.”

Megan and Dimitar face an uncertain future together as Megan approaches the end of life. The time scale in which the cancer will take hold is still not clear but they are taking every action to prolong her life and cherish every moment that they have left of it. They travel the path towards an end together, hand in hand, enveloped by a love that will never end.

Click here to watch filmed interviews

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OCULAR MELANOMA

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

MEGAN MCCLAY’S JUSTGIVING PAGE

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 the National Institute for Health and Care Excellence (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.

Source: https://justgiving.com/crowdfunding/megan-mcclay

OCUMEL UK

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

THE NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE (NICE)

The National Institute for Health and Care Excellence (NICE) are the experts in evidence-based best practice and value for money. NICE practice with a core purpose of helping practitioners and commissioners get the best care to patients, quickly, whilst ensuring value for the taxpayer.

To learn more about The National Institute for Health and Care Excellence (NICE), click here.

Source: https://nice.org.uk

SOUTHAMPTON SPIRE HOSPITAL

Spire Southampton Hospital attract patients from across the South of England and internationally by offering great care. They are able to deliver some of the best cardiac surgery results in the UK and offer ground-breaking new treatments. The Critical Care staff and multidisciplinary team offer a wide range of treatments.

To learn more about Spire Southampton Hospital, click here.

Source: https://spirehealthcare.com/spire-southampton-hospital

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