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‘You have a freckle in your eye’ from Heather Burt

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Who would think that a routine trip to the opticians would change your life for ever!

I am 63 , married with 2 children and 5 grand children. I have always enjoyed crafts, sewing knitting, beadwork, card making. The crafts were a great stress reliever after 40 years of nursing. I was fit and healthy no medical conditions to speak of. I had worn glasses for a while but thought I would have a new pair as I was doing more intricate items that needed a greater  degree of magnification.

I duly went off to Specsavers in Basingstoke and had my eye test. The optometrist asked me if I wanted my eyes dilated so he could have a good look around.

I had never had my eyes dilated before  so agreed as I wasn’t in a rush that day. I am so very glad I agreed.

The optometrist said I had a freckle in my left eye but he was a little concerned about it and suggested I saw my G.P. I wasn’t perturbed I am covered in freckles ,moles and am fair skinned. I went off to my GP who had a cancellation in an hour  so quickly was sat in front of him explaining what had been found.

I was referred to the local hospital and had a phone call within 48 hours to see the hospital ophthalmologist I still wasn’t worried it was only a freckle! I had 2 consultants peering in my eyes. I  still couldn’t understand why they were so excited . I was given very little information , nothing written and monitored for 8 months oblivious of how serious this freckle would  be.

On my last visit to the local hospital I knew things had changed. The lady measuring my eyes kept going back over a certain area , she was frowning , I was picking up on her body language that all was not well. I saw the consultant who asked me if I wanted a referral to Moorfields in London she wasn’t sure if the freckle was a choroidal melanoma, I agreed , again no  written information or points of contact given for further information, being  a retired nurse I Googled it of course when I got home !

I was still in denial, I had never met anyone in my nursing career with choroidal Melanoma , my GP  had never met any one with it so they were just been cautious surely?
A few weeks later I went to Moorfields had a battery of tests and the consultant very carefully confirmed I had cancer, a choroidal melanoma and it would need treatment. She went through all the worse case scenarios and suddenly it all began to sink in. This was serious , it could kill me! I was given a photocopied sheet briefly stating what choroidal melanoma was. I went to tell my family but felt numb this couldn’t be happening to me. More waiting for a date .

I duly had a date for plaque brachytherapy. I had of course looked on You Tube as to how this plaque was sewn to my eye ball ,I needed to understand what they were going to do to me. The week in hospital  went slowly relieved by making cards and wandering the corridors at night albeit having a Geiger counter waved over me regularly. I kept a small lion one of my grandchildren had given me to remind me to be brave.

On the day I went home we drove past the Grenville Tower where so many people had died I felt bruised, battered but grateful to be alive.

I went home and found OcuMel Uk on line who were my life saver. I could ask those questions that others could not answer, support at last. The physical side was not painful but the mental pain was  and is ongoing .I went to my local cancer group. They all had breast cancer , they had never heard of ocular melanoma but welcomed me. I poured my heart out to the psychologist who taught me how to cope but I still didn’t feel ill when compared to the breast cancer ladies.

I  attended the OcuMel Uk conference at Reading. Suddenly there were people who knew what I had, worried about the same things as me. There was lots of information, lots to take in I could talk to my Doctors about what I wanted with conviction.

The speakers didn’t pull punches there is no ‘ cure’ for this disease but there was hope ,a little band of medics and researchers that were interested in us, we supported each other face to face and on line!

I also went to the conference in Holland. Again I learned more, met people who are changing the face of medicine for patients and their carers, this disease was on their radar.
I now have MRI,s to check for any spread to my liver. Early detection could lead to earlier treatment but sadly this is not offered to all especially in Scotland. There is always a feeling of rising anxiety before results consultations – ‘has anything been found, has the radiographer missed any thing ‘?
I have never felt ill with this disease, I always felt a fraud when I went to the cancer clinic , I didn’t look like some one with cancer , I look too well. I have this disease it doesn’t have me . It was only a freckle.

I have my black moments when I know I won’t be an old lady giving my daughters hell but some people don’t get this far.
Today I have glitter all over my kitchen floor,I am grateful , I can see the glitter and I am here making memories with my grandchildren. If I had not walked into the  opticians that day my story might be very different.

I would like to see eye tests given the same importance as other screening tests and every optician be aware that they might pick up this life limiting cancer.
I am very grateful for the NHS, Specsavers, Moorfields hospital, Southampton hospital for their ongoing care and especially the  closed Facebook members of OcuMel Uk who are my lifesavers.
But It’s was only  a freckle!

Katie McKay’s Story

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In June 2011 I qualified as a reflexologist, I was the happiest I had been in a long time, and very proud of my achievements. At the start of the course I hadn’t thought about it as a business but as time went by and I began to get confidence in myself I thought perhaps I could start up professionally it would fit in with my life and I would also be helping others.

Only a matter of weeks went past when at the time I was having some rooms in my home painted. I began to find difficulty with choosing colours, I had a strangeness in my left eye and a light, I constantly rubbed it, making it blurry to see out of. With no change in my eye and not being someone to just leave things I booked an appointment with my optician. Not seeing anything out of the ordinary I was given eye wipes to try and asked to come back in a week if there was no change. The week passed with no change so back I went when again I was tested this time with a stick that had a ball on the end, I couldn’t see the ball and for a scary moment I thought I was going blind at that point I cried with fright. My optician then asked me to go to eye casualty at the Royal Hospital with a very concerned look on her face. I arrived and after a 5 hour wait I was seen by an ophthalmologist who was incredibly rude to me saying

“ I don’t know why your here “ “this is not an emergency “ you have central serious retinopathy all you got was an answer go home and rest if it’s not better in 6 month we will treat it, and home I went to rest.

It was July so I had until February before I would be referred back for treatment if needed. My optician was not convinced with the ophthalmologist’s diagnoses and when I later got an appointment in my local eye clinic just out of the blue neither was the ophthalmologist who saw me that day. By now it was October, with no change sight wise and more light in my eye he looked at me with concern and said I think someone’s gotten it wrong, can you please come to the Royal Hospital tomorrow where I can test you properly. I then went from this appointment to a next appointment at the Mater Eye Clinic when on the 19th of October 2011 at a few minutes to 12 O’clock and after many tests I was called back into the consulting room and asked to bring my husband. I shiver even as I write this because my life changed at that very moment even before the word tumour was mentioned. Then began my journey and many journeys to Liverpool, I live in the countryside roughly 25 miles from Belfast in N.Ireland, Liverpool was the nearest eye hospital for treatment. I arrived on the 24th of October and was diagnosed with Ocular Melanoma. One week later I flew back to Liverpool on the 1st of November for a biopsy, I then got my result on the 14th of November from my own GP, cancer cells had been found, I was then dismissed from Liverpool and red flagged to have tests carried out all over because they had thought that maybe it was a seed that had travelled from a cancer somewhere else, the next few week were taken up by tests worry and normal life. With clear results apart from a few hotspots I was again sent back to Liverpool when on the 22nd of December it was decided the Cancer was in my eye and treatment began.

I have been on this journey now for 5 years. I as yet have not started up my business in reflexology although my son had business cards made up for me as a birthday present in February 2012 this same son was heading off to study in Cork and encouraged me to go do the course, I am considering the possibility now though and looking at February 2017 as a good place to start as I’m now 5 years on, it was too difficult to give fully of myself in such a quiet space because as it was back then and still is, I have a little shinning light in my eye and most days it still frightens me.

Katie’s story featured in a local woman’s magazine 2014

I did find focus in something else, one year to the date when I sat in the chair to be told I had a tumour in my left eye I was booked into a recording studio where

I started to record a 13 track album on 19th of October 2012 taking a year to record, I then stood out on stage on 24th of October 2013 to sing to an audience for my first time, I needed to turn the negativity of these two dates into a positive for me. During a visit to Liverpool I got chatting to the wife of a man who had been diagnosed she asked how I coped, I said I write it down in a journal to get it out of my head as I can’t share my thoughts and fears, there’s no group I can go and talk to, Oh she said you should make it into a book, it would really help people like me my husband doesn’t want to talk, I don’t know how to help him.

So I went about putting my words together and typing them up sending it to a proof-reader who then helped with the publishing and so began my journey into book writing. My book

( Look! See Through Katie’s Eyes ) was published through Amazon and also available on E book in October 2015 with the proceeds from sales going to St Paul Eye Clinic into research by way of thanks for the excellent care I received during my many visits there. It is very much my story, so when I discovered OcuMel Support in August this year I sent my book off to them. I had an immediate response back and was asked to join their facebook page they also put my link up and I had lots of interest in my book and also some lovely feedback for which I am so grateful. I was then invited over to Reading to the OcuMel 2016 UK Conference in September with my books and also to be a speaker eeek,

Not having spoken in public before I was very, very nervous. I finished and to my shock Kathryn asked if anyone had any questions for me, A gentleman at the back put up his hand with my book, now his book in it and said can you sign my book, with relief at the question and laughter throughout the room my first stint at public speaking was over. I then made my way over to the gentleman, he had written a name in the book and asked if I would sign it for his daughter, he then ask If I would hug his wife I turned to her and as we hugged she cried, she said thank you so much for your book it reminds us so much of our daughter she died of Ocular Melanoma. I don’t know how I didn’t cry, I was so touched by that moment and this couple, I will never forget them or what it brought to my heart that day, this alone made my book worthwhile.

Katie’s book, check it out on Amazon! For some insight into a journey with Ocular Melanoma..

 

As I finish off my piece of writing I would like to share with you my speech from the conference. I feel it is a good reflexion in short of me and my journey living as I do with this rare and little known about orphan Cancer. The tumour in my eye has now been Cancer free since my last appointment in Liverpool on the 4th of December 2015… I have 6 monthly appointments at oncology and with my Ophthalmologists and for the foreseeable future since my tumour became active for the second time in 2013. Apart from my one bad experience as mentioned at the start I have been treated so,so well, I am very grateful for such wonderful care.

Firstly I would like to thank OcuMel UK for inviting me..

I was asked last week if I would consider being a speaker at this year’s conference, never having spoken in public before, I am a little nervous.

I woke the next morning to a post on my daughter’s yoga page – The pose for today! Seated boat poses… Nav meaning boat refers to the word pranava, known as the cosmic vibration, OM… Spelt OM.

In the upanishands, OM is described as a boat that carries us safely across life’s stormy seas.

My daughter is in Canada training to be a yoga teacher, she also describes her first yoga class sitting in a candle lit room, as OM echoed throughout, it was a small group of people, all struggling and desperately fighting to make it to the shore still breathing, much like sitting in this room today, in my case anyhow because I don’t want to rush my speech and make it seem too short.. Plus there are no candles, perhaps a dimmer room would make me less nervous!

Thankfully because I have written this little book it’s ok for me to make reference to my story and hopefully put it across better with some quotes from the book in my talk.

Laurens post reminded me of my first visit to Liverpool eye clinic in 2011, where a note on the notice board said that 1 in 3 people with an appointment would be diagnosed with an eye tumour!

I looked around; everyone was in the same boat as me. Here we were people from all over the country with our little suitcases in this one room and we all had something in common – FEAR – I felt horrible, don’t let it be me, I thought and instantly felt guilty that it had to be any of us.

In the past month I joined a group of people for whom OM has a different meaning Ocular Melanoma, at first when I saw the initials OM on a post I wasn’t sure what it meant but then it clicked..

In the past 5 years since being diagnosed, I have felt very much like I am in a boat alone sailing across life’s stormy seas.

I was first treated in 2011 with PDT which is Photo Dynamic Therapy…

In 2014 after activity had returned for the 3rd time, I was told the PDT treatment was not working for me and I would have to have surgery and radiation (Proton Beam Therapy)

It was December2014, and after my appointment it was too late to make it to the airport for our flight home, so we were booked into a hotel for the night.

The tables were all set for Christmas, we ordered two Christmas dinners and pulled our crackers, Danny got playing cards, ME? I got an eye patch, Danny and I both looked at each other and laughed for the first time in weeks, then he looked up to the heavens and said “what are you trying to do to us!”

Excuse me for making reference to Christmas so early in September.

I am forever amazed by the angst of life – What drives us, how we keep going. The incredible recovery of the body and of the mind-of my precious eye. Although I have fought with this constantly recurring disease, the story has come full circle for me now. How do the pieces of our lives stay together? How many times do I get to fall apart? It has brought me back to a place of fear too many times and yet in the depths of it all I still feel blessed – blessed that it’s now almost 20 months on since my surgery in Jan 2015 and I still have vision in both eyes!

We all face different outcomes as we walk through the doors in our hospital eye clinics for the first time. It’s where patient’s common thoughts and fears meet, although very often we don’t speak to one another.

I am glad to have found fellow travellers with whom I can relate my concerns with. I find it a very lonely journey, and having my marker on our map makes me look quite isolated but I am sure there are others who just haven’t found the OcuMel UK support group.

My reason for writing about my experiences, was so that I could get them out of my head, stop them from going round and round, it was very therapeutic for me, it also gave me a since of pride to have accomplished and came so far..

In the beginning I cried so much I thought I would never stop but it is surprising how everyday life kicks in and you find yourself just getting on with life, perhaps in a different way. I did find readjusting difficult at the start and in many ways I am constantly readjusting, all the resting trying all the time to take such good care of my eye, or should I say eyes.

Sight is part of our energy, and the retina is the only place in the body where the arteries and veins can be seen, everywhere else is covered with skin making our eyes our greatest asset and worthy of our constant care and protection.

In my eye a seed was planted, that seed made me grow, in my loneliness I grew to sing, I needed something to focus on, my love for music pulled me in and on the 19th of October 2012 one year to the day of my initial diagnosis I was in a recording studio and one year later standing out in front of an audience singing for the first time, I don’t know what I was thinking, I get so nervous, but I love it so much. I have also written music, I’ve written a book I am facing my fears and living my life.

The best part of my life was in 2012 during the time I was clear for a year. I found the best part of me through new friends, I learned to trust in myself to stand alone and make my way no matter what tried to hold me back. It is sometimes in your loneliness you discover a better version of yourself.

Holding on to that is sometimes or some days a struggle, but each day brings new hope.  

Cancer scared the life out of me, but surprisingly it also scared the life into me.

Cancer can sometimes give you back your life…

Practice mindfulness and a little OM in your day … I wish you all well.

Thanks for listening to a little of my story.

My daughter and I in Liverpool handing over a cheque for £1455.00 to Dr Angi, and Mrs Laura Edmonds back in 2012 after my daughter organised her blue eyes event for our 25th Wedding anniversary with money instead of presents making up the total money donated.

When I was diagnosed back in 2011 there was no help, not even on the World Wide Web.   The support of OcuMel UK is a very valuable resource to all of us, especially anyone just diagnosed, finding themselves fighting for hope in the face of such fear, but also for the wealth of knowledge of the OcuMelers and the support of one another.

You can check Katie out and purchase music on www.katiemckay.co.uk

Where you can also see her on You Tube!

Becky Brock’s Story

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My story started when I noticed I couldn’t see out the side of my left eye!

I regularly go to the opticians and had a photo of the back of my eye in April 2016 which was all clear but when I was sent for an urgent appointment on Monday 3rd of October 2016 there was a mass, and my whole world turned upside down when I heard the word cancer.

By Thursday I was having CT and PET scans to make sure it hadn’t spread and on Friday 7th October 2016 I was having plaque treatment at moorefield hospital.

I was in for 5 days and it still doesn’t seem real.

I have had regular appointments to check my Tumour and am lucky to say that at the moment it is reducing and doing everything the doctors want it to do.

I have 3 monthly scans alternating between ultrasound and MRI on my liver (as this is the prime site for it to metastasis) and I would love to say that a year in it gets easier but the stress leading up to each one isn’t easy (scanxiety some will call it)

I have had a few rare complications where I am now on steroids of posterior scleritis which has set me back but I am reducing them slowly and hoping to get off them this year!

Ocumel was the first charity I found when I googled on the second day of my prognosis and when I called in blind panic they helped me understand and answer questions that other doctors couldn’t, the group that is set up is amazing and I find them all individually lovely people that you can message and ask anything and not feel silly or alone.  We have lost some great people along my journey with this disease so far and I just hope that with more awareness and hopefully more funding we can get more research and understanding of this disease.