Just an eye

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Okay it’s taken me a week to gather my thoughts, and I don’t feel they are fully gathered yet so if anybody reading this can help, please do.  Firstly, if I asked anyone would they do anything to save their sight I know what the answer would be. But this is the question that is exhausting me and suddenly isn’t as clear cut.

Last Monday I went for my regular eye check up. I knew my sight had got worse but I felt anxious as I didn’t really want to know how bad it had got. I didn’t want it confirmed. I went in to see the nurse first for an eye test and as she handed me the little glasses I felt sick. She asked me to cover my good eye and see how many of the letters I could read. I took a deep breath and felt like crying. I didn’t want to know. In May, my bad eye could see about the fourth line down, now as I put the strange glasses on I could see the big fat capital ‘A’ at the top of the chart and one other letter underneath. There was a moment of confusion as the nurse was checking which ‘A’ it was I could see, hoping it was one a few lines down and then a sobering moment when myself, my husband and the nurse noted that it had got that bad. She handed me glasses with lots of holes in to see if this would improve matters, this only made it worse as the big fat ‘A’ disappeared from view. I tried not to cry. What does it matter? It’s just an eye? I’m still here?

I changed the glasses over to check on my good eye and I raced to the very bottom of the chart to reel off what I could see, only getting two of the tiniest letters wrong. Thank goodness that eye is so good was my thought.

Waiting to see my consultant I felt sick. Apprehensive. I wasn’t sure why as surely there was nothing to worry about. She called me in and appeared sympathetic that my sight had deteriorated. She seemed surprised that it had happened so fast, since May she noted. I actually knew it had happened since July so even quicker. My eye was dilated and the eye test began. This was where my anxiety reached boiling point again. I think after a cancer diagnosis that fear that is etched and scarred on your memory, the nausea, the sweating pounding heart, the inability to eat, sleep or function is always so close to the surface. One wrong comment from someone, a look, a feeling, has you spiralling back into its clutches and that was where I was heading again, as she paused and measured, paused and measured. “Look to the left.” Pause. “Now look to the right.” Pause. “Up a little bit.” Pause. While all this is going on I’m thinking “Oh F**k I’m going to vomit.” My husband told me after that he was scrabbling for his phone googling ‘oedema in the eye- what it means?’ The couple of minutes waiting to hear what she has seen, is vile.

“Yes I can see why your sight has got worse, there is a build up of fluid. Remember you had it before and it cleared up spontaneously? Yes so it’s come back, but the tumour is looking good….” And breathe. Sod the fluid! The tumour is looking good. And try not to cry.  She continued by telling me that the tumour was flat and remains in remission but she feels it may be worth re-investigating whether the injection in the eyeball would help my sight. She explained that Avastin injections could help clear up the fluid so could restore some of my lost sight. What needed to be checked was how far the dreaded ischaemia has travelled as Avastin doesn’t help with this.  So I was sent for photos and imaging and will be back to see her in a few weeks to see if the injections are worth doing and if I decide to have them.  Decide to have them? This is the crazy thought going through my head that I’m trying to work out.

Now I know I’m a chicken and don’t like the idea of an injection monthly, but my issue is that I am going to lose the sight in that eye anyway. That is fact. The radioactive plaque was placed too close to my optic nerve to save it, so how long can Avastin hold off the inevitable? If it’s only for a year, do I want to have an injection in my eye for that? And that is three injections over three months, I’m not sure how often they are repeated.  If it could restore the sight for longer then yes of course it would be worth it. Then I started reading about the side effects. I asked people on the eye cancer group what side effects they had had, the replies varied from ‘Avastin is a miracle it restored my sight’ to others who said it caused dry gritty eyes and had no benefit. It can cause redness in the eye, which of course will fade over time, but it is there as an obvious reminder that I had eye cancer. Something my youngest sensitive daughter does not want to be reminded of. She cried for about three weeks after I got the marathon place, as for her this was proof I was getting better. People that are ill and have cancer can’t run the marathon, “my mum can because she’s better,” were her thoughts. Travelling for monthly hospital appointments and coming back with an irritable red eye for a few days is not something I want if the outcome isn’t worth it. There was also a risk of cataracts. I’m 43! I don’t want cataracts. Now I know all the risks listed aren’t necessarily what people will experience. The risk of cataracts may be very low and these are things I need to discuss with my consultant, although I’m  sure even she won’t know whether or not the injection will work and what side effects, if any I will experience. She will probably suggest I just give them a go. I feel a little like I should and am veering in that direction but I’m not completely there yet.

The fear that the Monday appointment brought with it, reminded me that this is how I will feel again very soon as my MRI approaches and I’m at the 2 1/2 year point.  I keep hearing people say they had mets discovered at 2 years, 2 1/2 years, 3 years and I want to run away. I stare at them thinking maybe there was a sign that they would get it, a sign I don’t have. How are they different to me or are we the same?  I went for a run on the Tuesday and cried a little as I ran. I felt pleased I could run as it helps me to calm down and I needed to, my thoughts were all over the place. I felt stupid for feeling upset when there are so many people worse off than me. It hasn’t gone to my liver, it is just an eye. But I think we all have down days when things feel bad, days when I want to scream that I don’t want this f**ker in my life anymore. Scream that I want to be able to look at my calendar and not think about scans and what ifs? Guilty for feeling down about it. Surely I should feel positive all of the time? I also felt scared about losing the sight in my other eye. I ran with my 80 year old dad and felt jealous that he is so healthy. Will I be alive at 80 and if so will I be registered blind? It’s a hideous sobering thought thinking about it all and I have desperately been trying not to. People say you can’t worry about the future as you don’t know what’s round the corner and I know it’s true, but I think we all have times where those thoughts take over.

So If I asked you now would you do anything to save your sight would your answer be the same? If anyone has a crystal ball and can tell me what to do I would be most grateful. Failing that I might just flip a coin.

Until next time take care.

Cheers

Ruth xxxx

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Two eyes?! That’s so last year!

Firstly a huge big thank you to everyone that voted for me. With your help I was successful in securing the marathon place to run for Ocumel UK.  I didn’t expect to get it, I just nagged and begged anyone I came across to vote for me as I  didn’t want to lose dismally,  It’s incredible the power of social media, that someone with about five friends can get over 1,300 votes! Hilariously I think some people are still voting- you can stop  now.  Votes closed a month go. But thank you! I also put in for a ballot place so I’m keeping my fingers crossed that that comes through, then I can give my place to the other lady that wanted to run in memory of her brother and Ocumeluk will have two places!

My training is well under way. I am running three times a week and just completed a lap of Richmond park which is seven and a half miles up and down hill. It’s tough so I’m really pleased with that. In fact I was bloody thrilled! It was as if I had just completed the  marathon already. Unfortunately there is another 19 miles to go! But I will have ‘buns of steel’ and and less cellulite and flab then when I started so it’s all good.  Someone on our Facebook group recently referred to me as ‘the marathon runner.’ I of course loved that and it made me laugh, for days! It conjures up images of a fine tuned athlete having a protein shake on the way to training. Anyone that knows me will confirm that’s not me! I’m more of a rush out of the door with a piece of toast, hoping I’ve got 20p’s for the toilets on the way round and dreaming of what I can eat after all the calories I will have burned, or how many glasses of wine I can have. I will keep you all updated on how I get on. With the training. Not my food and alcohol consumption.

Autumn is always the back to school and back to hospital visits time. My eye appointment is first and I’m interested to see officially how much my vision has changed.  How bad does your sight need to be before they say you are blind or partially sighted in it?  Yes my sight has got that bad. It is interesting though having an insight into sight loss. There is the side of me that finds it fascinating, but I of course wish it wasn’t my eye and my life I was fascinated in. I have been quite surprised at how quickly over the last two months my eye sight has deteriorated. On holiday my middle daughter was standing on a rock looking out to sea. I was standing a few meters behind and I closed my good eye. The top part of her body disappeared. She was just legs. Legs with a voice. Shouting something about sea gooseberries. Who knew they weren’t jellyfish?!

My husband came and stood next to me. I was still squinting with one eye closed as I couldn’t believe how much of the world was slowly disappearing in front of me. I was trying to imagine what it would be like if this was it for both eyes?  How frightened would you feel? What would I see or what would I miss?  It had that fascinating terrifying sensation, like that of a horror movie. I didn’t want to look but I couldn’t help myself. I felt relief to be able to open my other eye and see the world in all its glory and colour come flooding back in. My husband looked sad. I don’t have the patience for sad emotions anymore and I was surprised that he felt like that. I wanted to ask him how he could feel sad? Surely he knew this was going on? But I slowly realised that he didn’t. This is my daily life. I have nudges throughout the day that my eye is playing up. I have constant reminders that give me time to process my thoughts and feelings. Because I don’t do daily or even weekly updates with him, or anybody, I realised it’s more of a shock,  as perhaps he imagined things were stable.

There are though things that happen that make it obvious to everyone around me that my sight is going. Times when I can’t hide it. My family are all now aware of when I drop a glass, they may ask nicely if it slipped or did I not see where I was placing it. I guess they are also trying to figure out how blind and deaf I’m getting. I will sometimes now just ask my husband to read the menu in a restaurant. My daughters are very good at grabbing things off me and reading instructions. This helps greatly with not overdosing said children or animals on various medications. So well done girls. Playing monopoly with them recently I noticed I kept adding the scores on the dice wrongly. Now I am no maths genius but my basic mental arithmetic has never failed me before. I realised its not that I no longer know what 6 + 4 is, it’s more that I saw 5 + 4. I kept picking up the dice to check. How was I missing some dots? Also right eye makeup? Forget it. I just have to splodge it on and hope for the best.

So since the holiday things have gone from bad to worse. I think I can see out of the left peripheral side, but that’s it. I can no longer see faces in photos, larger font. The lens is damaged and the sight is no longer there. It’s interesting that its taken this long to happen, I had hoped it wasnt going to happen to me. For the first time ever I lay in bed last night worried about my other eye. Suddenly scared I would have an accident or damage it. As I now only have one I’m all for protecting it. I may start wondering round wearing swimming goggles, that would be a good look. Strangely I don’t feel that about my ear. I never worry about losing the hearing in that one, I’m obviously showing favouritism to my eye. Poor ear. I explained to my husband that I’m still bloody lucky as the blind eye is on the same side as my deaf ear. At a dinner party people ask me what side I’m better off sitting on and that’s it. I’m good. Imagine if it was opposite sides? I’d have to ask people wether they would like to sit next to my good ear or my good eye?  Do they consider themselves more interesting to look at or to listen to? Good looking but boring bloke to the left. Not an oil painting but fascinating to listen to on the right. Luckily my life isn’t that complicated.

The other thing playing on my mind is the dreaded MRI scans. As you know they are 6 monthly and it’s my Russian roulette time. When they approach the sleepless nights kick in. The inability to see people and miserable moods. My next scan is always before my birthday as I like it out of the way so that I can stop worrying. This means the 6 monthly scan after that is due in April. On April 27th 2018 I will be 3 years post diagnosis. The haunting statement of ‘the average time it takes to get to your liver is 3 years’ hangs over that date. The London marathon is April 22nd 2018. So what do I do? Have my scan before to get it out of the way? Or plan it for after?  Either way it’s a shit time and I’m trying to work out what is best. I will be organising the date at the end of October so I need to have it worked out in my brain by then. I’m slowly opting for before so that I will be sleeping, I hope, but then I think if the news wasn’t good would I be in a fit state to run? Or actually I may just end up running bloody fast with all the fear and adrenaline pumped round my body! Any ideas gratefully received.

And lastly, fancy dress or not? If fancy dress it has to be light, I will struggle enough running the marathon without carrying anything heavy around with me. Last time I ran the marathon, I’m not sure if I ever mentioned I’d run one before? But last time I was overtaken by bloody rhinos, hippos, mr men, blokes with great big fridges on their backs?! It was totally demoralising.  Anyway, everyone says you tend to get more sponsorship money if you wear fancy dress. So any ideas please or offers to make something gratefully received.  I’m crap at things like that and I don’t want to embarrass my kids by turning up with just some loo roll tied around my head.

Quick pet update as people keep asking about Rosie. She’s doing remarkably well for a cat that had months to live. She has brought in more mice and birds than ever and is going from strength to strength. My labradoodle Barney has had an eye op this week so he gets to share my photo in my fetching swimming goggles, the new look for Autumn 17. You saw it here first!

Cheers

The Marathon Runner!!!

Ocumeluk

 

Photo on 02-08-2017 at 14.47

As many of you know who have been reading my blog, I once ran the marathon. Yes I like to talk, (brag) about it. Hence the shock with a cancer diagnosis. Surely not? I am a fit youngish thing who has ran 26.1 miles. I can’t have cancer. But of course I did and I learnt quite suddenly and traumatically that cancer doesn’t discriminate against age, sex, fitness levels or marathon runners.

Ocumeluk stepped in quickly with all the knowledge and resources that I needed, I was wrapped in their warm safety net and made many friends along the way.  I am over 2 years post diagnosis, I am doing well other than having been overcome by a mild sense of madness as I am trying to win a place in Ocumeluk’s marathon team. Something I said I would never do again, it was something I had ticked off my bucket list. But I feel the urge to give something back. At present Ocumeluk are looking for funding so that more people can access MRI scans with contrast, as at present it seems not everyone is equally entitled to them, I am.  I am one of the lucky ones, but many have to fight to be scanned and this is wrong. These sensitive MRI scans pick up liver mets earlier than any other method. They are the gold standard as mentioned in the NICE guidelines but funding prevents many people accessing them. This inequality in healthcare and postcode lottery is really enough for me to want to put my trainers on and run.

Also I’m hoping to lose a bit of weight along the way, yes every cloud and all that and it helps keep my sanity, as my check ups and scans approach,  exercise, physical pain and exhaustion are my only coping mechanisms.

By entering the competition to win the marathon place I need as many likes/votes on their page as possible. I am struggling with this slightly.  Firstly, because I have to compete with someone else who wants the place. Someone else who has valid reasons for fighting for the place and I don’t like the idea of it seeming like one of us is more valid/important than the other. But I also know that all the sharing on social media is great for the charity.   I am sure both of us who are competing for the place have respect for each other in wanting to do it and the end result is that one of us will raise a whole lot of dosh for Ocumeluk.  Being up last night thinking about it made me realise that the likes/votes are not for who’s story seems more worthy, as everyone who has been touched by cancer is worthy, it’s my friends, my family, my friends’ family, the neighbours, the man in the corner shop and anyone else that I can accost in the street showing their support for me. Just as many people are showing their support for her and that in itself is a great feeling. That we have support and people wishing us well.

My other concern is that  I don’t have that many friends to ask to vote. Well not 500 anyway, I have  my 5 bestie’s and then about 20 other really good friends and then 100 plus FB friends but I don’t have 500! Where can I get 500 friends from in a hurry?   On the last count, yes I am obsessively checking numbers hourly…., oh okay, every ten minutes or so,  my ‘competitor’ had way over 100 more votes than me.  Where do they come from? I have squeezed everyone I know. I was on my last day of my holiday yesterday, lying on the beach when the first message came through that the votes can be posted so to get sharing. Sharing to who? In between running on an inflatable sea torture obstacle course with the kids and slapping suncream on various body parts of various family members I was busily messaging my friends shouting “Share! share!” I’ve got till Friday and I feel like I’m running a losing campaign. I was even contemplating asking everyone on my flight home last night whether they all had Facebook and if so could they vote for me. Desperate times.

So my last chance at drumming up business is through my blog. A friend messaged me a short while ago to kindly say that every time she opens her phone my ‘ugly mug’ comes up (her words), as her lovely family are frantically sharing my post. Lovely family, but thinking of moving friend off my besties’ list. But anyway, she suggested I write a blog. Write a blog? Have you seen the piles of washing? The unpacking? The food to buy? I’m exhausted after a late flight and not feeling that amused. But then I thought, I only have until Friday to drum up business. So what does it matter if the suitcases hang around ponging for a few extra days or the kids scrabble around empty cupboards for food? I can write a blog and beg you all for help whilst eating dry cereal with the kids.

So please, if you have Facebook, would you type ‘ocumeluk’ into your search bar and then scroll down to my video and like it? Then could you get a few friends to do the same, the neighbours, the man in the corner shop and anyone that you can accost in the street? And then even if I don’t quite hit 500 likes I will at least manage to keep a little but of respect and not lose so dismally like a complete loser.

Thank you lovely people. Share! Share! Share!

Ruth xx

 

 

Slowly, Slowly

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We can still see you!

 

So slowly, slowly my sight is deteriorating. I know the signs that changes are happening now,  it is when I struggle to focus.  I find I can’t read without placing my hand over my bad eye. That then kick starts my brain to forget the bad eye and see what my good eye sees. Which is everything. I also know now that this only lasts a few days, maybe a week. The sight then stabilises, my brain knows where it’s at again and all is happy in my head. So with things stable I  trotted upstairs to look at my bathroom clock to see if there was a noticeable change.

I discovered this trick at the beginning of my sight loss. I stare at the middle of a clock, cover my good eye and see what numbers I can see. My 12 to 3 o’clock have been gone for about a year, but there has been no obvious changes since. I sort of expected to see  half eleven to 3 o’clock now, but unfortunately it’s slightly more than that. I can just see the number 10 but nothing passed it, and the number 4 but nothing before it, that’s practically half the sight in that eye. I stupidly didn’t realise it was that much until I started to write this blog and now I want to bawl and cry that my sight is going and I should perhaps run around like a headless chicken and panic, but bizarrely I don’t because unless I had tested it, I wouldn’t have known that it had got worse, as my brain is so good at filling in the gaps. I would have happily been head deep in the sand wondering why I have days where I can get through 4 glasses! Yes 4 in one day dropped in the sink, when I was absolutely sure I had placed them on the side. But hey ho they were empty glasses, I’m not crying over spilt bubbles.

My eye consultant told me that although people dread their sight going, sometimes once it has gone things are better as your brain knows exactly where it is at and you adjust accordingly. I can completely understand what she means. For those few days when changes are happening I find it a complete pain having to close one eye to read. I did it in a restaurant recently, as I couldn’t read the menu and felt a bit of plum doing it, wondering if the waitress thought I was just a little strange.

The good thing though is it is only for small things, like books, instructions, medicine and ingredients. What’s a salty dinner between friends? I can still see my kids and cars, which is quite important as I drive the kids to school each day and I wouldn’t want to lose the children, however unsympathetically they shout at me whilst playing badminton in the garden, that my shuttle cock was out and their’s was in, and they are definitely right because I’m blind so wouldn’t know anyway. I sense they are cheating but as I am not even sure if my shuttle cock has gone over or under the net I keep quiet. I think that is a change in my depth perception. I just start to do a couple of slam shots to show the little brats that their blind deaf mum still has it! Oh yes, I may be partially deaf and blind but I can still thrash you all. And if you don’t let your mother off  her ‘out of the court shots’ due to her disability, I may ‘not see you’ at school and drive home merrily assuming you have all got the bus and just pour myself a glass of bubbles in the garden, in peace. Sounds like a plan.

So all is well. Sight loss doesn’t bring with it panic and fear. It isn’t a problem for me. School is almost out. The summer holidays are almost here. And that in itself brings with it a few bubbles of excitement in my stomach, so I better pop a bottle in the fridge so I can actually put seem real bubbles in my stomach later, why waste an excuse of ‘it’s Tuesday and almost the summer holidays?’

Have a great summer all.

Cheers xxx

For David

 

Sometimes you don’t want to write. Not about cancer anyway, it’s crap and depressing and I don’t feel it is a huge part of my life anymore. Other than scan time when I’m petrified, I generally think of it as something that happened to me, not something that is ongoing.

Through the support network, Ocumeluk, I have got to know many truly inspirational people, people that I would choose as friends in real life and not just because cancer has thrown us together. I put those people in compartments, those diagnosed at the same time as me, those further down the line who have needed more treatment for recurrence in the eye, those who have needed their eye removed, those with liver mets, those who had plaque radiotherapy. In my head I have people to turn to for every eventuality. Someone who has been there, done that and bought the T-shirt.

My favourite people are the happy people, people who never seem to let it bother them (although we know of course it does). People who always want a laugh and can see the funny side in such sh*t times. That’s my type of person, as humour has definitely dragged me through my darkest days. This blog is for one of those people and who I felt was the same as me treatment wise. David was in my box of ‘treated and doing well.’ He always sent messages of encouragement when I felt scared and was just a bloody decent guy. He would sometimes share  my blog on his page which I found hugely complimentary.

When I came off social media for a while after christmas, he had posted the awful news that his scan had shown spread. So when I returned to FB I immediately regretted it. I was shocked and sad. I messaged him and he told me in brutal honestly what the consultant had told him. He was looking at a maximum of three years. His Facebook page was always full of pictures of him and his family, happy pictures with his wife, a man in love. What could I say? Humour bypassed me. I just replied ‘that’s sh*t.’ I hoped that within three years treatments would change and offer him a lifeline, I told him so. Tragically he never even had those three years. His wife informed us all on Friday night that he had passed away earlier in the week. An extremely kind soul gone.

The loss of anyone just creates that confusion of how and where? The slow realisation that no more message will come from him. He is no longer with us. And if that loss is felt so powerfully by those just close through a cancer group, imagine the immense loss felt by his family and friends? But I don’t want to be doom and gloom as I know he wasn’t. I have just struggled to feel lighthearted  while writing.

I thought back to Friday night when the notification came through that there was a post from his FB page, I hadn’t managed to open it in time before I clumsily dropped my phone down the loo! So I would just like him to know, wherever he is, that when people were offering condolences on Friday evening, I was fishing around a toilet at a Robbie Williams concert trying to retrieve my dropped  phone. I’m sure he would see the humour in this.

So I raise a glass to you my friend, wherever you are.  Wishing desperately that this blog wasn’t about you, wishing you were still in my box of ‘treated and doing well.’ I will miss your kind words, your crazy ramblings and your comments on our eye cancer group. I haven’t posted for a while on the group, but I know when I do I will wonder where your comment is, wonder why you haven’t messaged or replied and then I will remember,  that you have gone.

You will be missed. Be at peace.

Cheers my friend xxx

Regular Eye Check

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So I had my eye check up yesterday.  There was no fear or anxiety attached to this appointment. More just a moan that I had to travel to Harley street in the rain. Don’t you just love a British summer?

My husband asked me how I was feeling?  Fine, I replied, I’ve had no flickering or flashing and I haven’t noticed my eye sight deteriorating. So that’s all good isn’t it? I’m not worried at all. And I really wasn’t. I had more pressing matters on my mind.

I told my husband that it’s been two years since I was diagnosed. Two years ago I didn’t think I would ever be able to walk into an appointment feeling relaxed, two years ago I  didn’t  think I’d sleep properly ever again. Two years ago I wondered whether I would still be here or not and was hoping just to get my youngest out of primary school. But two years later here I am.

One year ago I started this blog. I thought I’d get bored quite quickly, run out of things to say, or find no one was interested in reading it, but one year later, here I am still waffling on. “So what’s the problem?” he asked, not really following my trail of thought. “What’s the problem?!” I retorted. “I wanted to have a celebratory birthday blog, it’s a year old, I’m two years down the line, everything’s good. I wanted to put a radiant photo (with lots of filter usage!) of myself  celebrating. But some f**ker thought it would be bloody hilarious to give me a great big STYE!!! I can’t put a photo of this on my blog, it will put people off their food!” He laughed as he went back to reading some financial crap. I wanted to shake him by the shoulders and shout how can you read about the worlds’ economy when I am sitting her with puss about to ooze from my eye?! But I didn’t. I left him to it, as I sat waiting to be called into my appointment, wondering whether to leave the stye well alone  or whether to perform some home surgery on it with a sterilised needle?

When I was eventually called up to see my ocular oncologist, she smiled at me, came over and asked how I was.  I could see her just staring at the monstrosity hanging from my eye lid. It’s one of those elephant in the room moments, do I answer her relating to my cancer or do I acknowledge this mammoth boil on my face? I decided it couldn’t be ignored. “Oh good, yes, other than this stye.” I laughed although I found it far from hilarious. “Umm” She replied, her eyes hadn’t moved from the spot since I walked into the room. “Maybe with all the massage form the ultrasound it might help it,” she offered encouragingly. Great, now I was thinking it was going to pop all over her bloomin ultrasound machine and I would have to sit and watch her wipe my pus off it! I sat at her desk ready for the questions about my eye cancer, but no, it was back to the stye. She recommended something she thought would speed up its demise. She wrote it for me on a card and even had a little feel. Did she want to squeeze it? I felt a little nauseaus.

Eventually, eventually we all managed to ignore the stye and concentrate on the real reason I was here. You will be pleased to know everything is stable. There is a tear in my retina, where the scar from radiotherapy was. This was a new but pretty irrelevant development. But it did make me think, after two years the radiation is still causing mayhem to my eye, it’s pretty potent stuff. My eye sight is remarkably good considering what has gone on there. I was told I would be blind in that eye within two years and I’m not. Sight not great out of that eye, but it’s not bad. The tumour is inactive which is the most important fact.  I will be back to see her in four months so can relax and enjoy the pissy British summer.

I couldn’t  go home and celebrate with bubbles as I am trying the 5:2 diet. Me and my stye sat with a peppermint tea catching up on ‘Line of Duty’ to celebrate. Today the bugger is no smaller and as I am meeting a friend for dinner tonight and don’t want to put her off her meal and I am having a starring role at my 15 year old nieces’ confirmation on Sunday, I am off to sterilise a needle.  I could just about face my consultant with the stye, I cannot face a group of 15 year olds questioning my niece on what her aunty has hanging from her eye lid! So home surgery it is.

Until then I shan’t be sharing my radiant stye photo with anyone, instead I have shared a photo of my dog Barney as he is so handsome and doesn’t have a stye and my ignorant princess Rosie, who likes to keep an eye on what I write and the birds outside. She also doesn’t have a stye. Until next time, have a glass of bubbles for me. Cheers! xx

Jacqui’s Story

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Since just before diagnosis  I have wanted to read about other people with eye cancer. Their personal stories. At the start I was desperately looking for people’s description of their first symptoms, wondering if mine were the same and if that was conclusive it was cancer. I then moved on to treatments. What treatments did people have and why? I now often search for stories on eye sight deterioration but mostly how long did it take for mets to be discovered. These patient stories help us all. Help us to not feel scared. Seeing people further along the journey coping, or  not, makes us feel normal. It is just difficult to find those stories, due to the rarity of our disease.

So a few people have agreed to share their experience of eye cancer on my blog, so that someone else out there, on their computer, Googling past midnight, feeling frightened, may feel less alone and less scared. Seeing people get on with day to day live somehow takes some of the fear away. So thank you to all those who have said they will share their story.  Now over to the wonderful Jacqui.

My name is Jacqui, I was 41 years old at the time of diagnosis – this is my story, it’s a bit long so well done if you get to the end!!!

In July 2013, I started to get blurred vision in my left eye. I was seven months pregnant and coming to the end of the year teaching infants, so I put it down to stress and/or being pregnant. I scheduled my yearly eye exam with my local optician for August, as I suspected my prescription needed changing, which it did. After receiving new glasses, things still didn’t seem right, so I went back for a re-test. This showed that my prescription had changed again and was put down to pregnancy, but another test was scheduled for two weeks later, just to make sure. This repeat test, on Friday 13th September, showed another change and more worrying (although not for me at this stage, as I was still in the ‘oh it’s pregnancy related’ mode) on the photos this time they could see that my optic nerve was swollen – not good. My optician said he would get me an appointment with a consultant optician, so I went home….and Googled. Big mistake! Nothing good came from that search.

Later that afternoon I got a call to say an appointment had been made for me at the nearest hospital, which was an hour away, with a consultant ophthalmologist for that evening, half past five. Cue panic mode. I had to get my husband home from work, sort out food etc. for our son Finnbar, who was three at the time, as we didn’t know how long we were going to be in the hospital.

At the hospital, I was taken straight to the Acute Care Unit, where they tested me for a brain bleed, MS and a whole host of other things that I have thankfully forgotten. After much debate, they kept me in overnight, finally admitting me at 11pm. Frank and Finnbar went home – Finnbar thoroughly enjoying the dark and spooky night. Screen Shot 2017-05-01 at 18.00.37

The next day the team decided that the only way forward was to do a scan of my head; initially they were reluctant to do so due to my pregnant state, but I had a lead apron placed protectively over my bump and a CT scan was performed. A considerable mass was detected. This was on the Saturday.

By the Wednesday, I was in Moorefields’ hospital having yet more tests, scans, photos etc. and none were conclusive, apart from the fact that there were two tumours – one inside my eye and one outside. At this point the team at Moorefields’ weren’t even sure if the two tumours were connected or two separate ones. My consultant wanted to do a biopsy of the tumour, but we had to wait three weeks for the aspirin I had been taking in pregnancy, to leave my system. To make things more difficult, I had to go to a different hospital, one with a neonatal unit, so that if the biopsy triggered labour, they would be able to deal with it! As my consultant at Moorefields’ said: “We are great with eyes, not so good on the rest of the body!”

We knew within the hour of having the biopsy that the tumours were connected and they were also malignant – I had, what is officially known as, Amelanotic Ocular Melanoma and they were of such a size that my eye could not be saved – I would need to have enucleation. Eye removal. This biopsy also analysed the tumour to determine the risk for mets. I found out at a subsequent appointment that I was high risk and this was a followed up by a letter to confirm as much. Although I had already been told, seeing it  brutally written in black and white shocked me.

But first….the small matter (if only, I was huge!) of my unborn baby….

An oncologist appointment the following week gave us more information about the enucleation and I was told that I had to make arrangements for my baby to be born that coming week. I was 35 weeks pregnant, so she had a good chance of being okay.

Back to the local hospital where my fabulous midwife ( I got a special one as I was classed as an older mother ha ha ha!!) arranged for me to have my baby by C-section the following Thursday. I needed to be admitted on the Tuesday, as I would need steroid injections in my bum to mature the baby’s lungs and because I had gestational diabetes (just another thing to add to the list!) the steroids would effect my insulin, so I needed to be monitored and hooked up to insulin for the 24 hours either side of the injection!

Emily was born at a good weight and a month later we went back yo Moorefields’ for my operation, I sat in bed with my now 4 year old Finnbar and explained how my eye wasn’t working, so the doctors were going to take it out. I explained I would have a bandage etc. and asked if he had any questions….”Yes” he replied, “How high do grasshoppers jump Mumma?”

The day before my op I had another scan where they found that one of the tumours was dangerously close to the bone, so they had to revise their surgery options and go for exenteration, which is removal of the eye, muscle and tissue and sew my eyelids together over the cavity. I wasn’t really prepared for this, but had no choice, so got on with it. I took a picture when I was all bandaged up to show Finnbar, so he wouldn’t be too worried and then Frank and I went home two days after the op and got on with normal stuff…for a while.

In the May following my exenteration, I had a course of radiotherapy on my eye socket – travelling up to London each day for 20 sessions. The travelling took about two and a half hours each way, for approximately five minutes of being zapped. It was tiring doing the commute and my socket became sore from the radiation, but these were all ‘normal’ side effects, and it gave me peace of mind that any stray/lingering cells left from my surgery were being blasted away. I also lost my hair in two big patches behind my ears, but was fortunate that my long hair covered up the bald patches. It grew back fairly quickly, although I did have a couple of months where I had curly bits sticking out of my otherwise straight hair! I also asked the lovely team (I had the same team for each session) whether I would glow in the dark after treatment! To be fair to them they didn’t laugh at my question…but sadly, no glow for me Screen Shot 2017-05-01 at 18.00.37. I gave my mask to Finnbar at the end of the sessions and he used it to be some sort of superhero!

I was down to have six monthly scans and in the February of 2014 I had an MRI, but the following scan in August was changed to a CT scan of my liver. I had read that I really needed an MRI, as CT scans aren’t as sensitive for the liver, so I referred myself (through my GP) to Southampton and an MRI was arranged for the October, 15 months after first noticing the blurring in my vision. I duly went and the initial reports were fine…but as I was ‘celebrating’ a year of living with one eye (much better going up/down stairs, but still rubbish at pouring wine!) I had a letter from Southampton to say that after closer inspection of the MRI, there were ‘suspicious masses’ in my liver that needed further investigation.

On the 4th February 2015, I went for another MRI of my liver – and knew the news wasn’t good when I saw the doctor wait for the nurse to come into the room before he spoke to me. Many tear later, we had a plan. It was a course of Ipilimumab to deal with the blobs.

We went home and Frank and I spent time dealing with the shock of it and then we got on with  stuff, as normal. The next day I posted on the OcumelUK Facebook page, about the appointment and was immediately flooded with messages – mainly about why I wasn’t having liver directed treatment! After a few phone calls (with OcumelUK acting for me) I found I was a suitable candidate for the new, experimental treatment of chemosaturation (Delcath). So I had this in May (major organising of childcare, with family coming to look after our children, so they could have as normal as possible routine).  Scans about six weeks later, showed tumours had stopped growing. I had the second part in the September.

Scans in the December showed one rogue tumour had grown, as there was a part of my liver that the team was not able to get the chemotherapy to, so we decided a resection was the best option. That was scheduled for early March 2016.

My resection was done, which involved another stay in hospital with my family looking after our children. At the consultation following the scans a few weeks later, the analysis of the tissue surrounding the tumour, showed there were lots of little ‘seeds’ – tumours too small to be seen on an MRI, so it was agreed that another course of Delcath was the best way forward, with a course of Ipilimumab before the treatment, as there was a wait on the Delcath. I had my third procedure in September 2016 and have had clear scans for six months.

Our children know nothing about my prognosis and we are going to keep it this way for as long as possible. Finnbar knows that I mUst go to hospital to get the bad blobs zapped/cut out of me and he is fine with that – we make a game of counting my bruises when I come home!

My next scans are in May, so we will see what happens from there.

 

 

Socks and Bruises….and Champagne!

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I wrote this blog in two halves. The first half was written before my scan, when anxiety levels were high. The depressing thoughts that I didn’t want to share before my results as it’s like spreading gloom. So if you want to miss the first half, do, I would and scroll to the results. The happy ending.

PRE SCAN

It started at the beginning of the Easter break, the realisation that it was April,  March had gone and it was the month of the dreaded scans.  I scrabbled for my phone to check for dates as  I didn’t have it engraved in my mind anymore. Surely that was progress? That my thoughts are no longer full of appointments, follow ups, scans and cancer.  It was three weeks away, I took a deep breath. Stay calm, I told myself, as I’m sure I’ll be fine. I’ll be one of the lucky ones, right?

That calmness lasted less than 48 hours, before the news filtered through that another Facebook friend had had worrying news. Her liver scan showed something. I felt sick, for her, for me, for the realisation that this cancer will take away 50% of us. And no one knows who it’s going to be. You end up offering useless reassurances, sending futile messages that ‘I’m sure its nothing, maybe just a touch of liver cirrhosis.’ Are you allowed to hope for that, rather than liver cancer? ‘Have a glass of wine.’ I encouraged, not sure what else to say, as I know that nothing anyone will say, will take away the mental anguish, the waking at night, panicking. We can laugh and thank each other for all the support,  but when night-time comes, you are usually all alone. With your fears and thoughts.

That night I had my first sleepless night in a long time. I thought I was relatively relaxed when I nodded of, I was tired, I had had fun with the kids, I think I had even been for a run.  Everything was in place for a peaceful night. So what woke me so violently from my sleep? And I say violently, because it is. It’s like waking from a nightmare, heart racing, body sweating, gasping for air. But I hadn’t had a nightmare. I couldn’t recollect what was scary. What had woken me. For those few seconds I couldn’t remember as I tried to wake my mind fully. Were we going on holiday in the morning? Had I forgotten my passport? Were the kids meant to be somewhere? Had I forgotten an important date? Then the realisation dawned on me. No it’s the fear of spread. Will the cancer have gone to my liver? Then I have to start telling myself why it couldn’t possibly go to my liver, convincing myself to believe my lies that it won’t happen to me and trying to make myself relax so that I can go back to sleep. Eventually I do. One day I cried to my husband that I wished I had never woken up in the morning. Not in a ‘I wish I’m dead’ way,  but  when I am sleeping, everything is good, when I wake up, I remember. And I don’t want to remember.

So April rolled on, it was mainly good scattered with the odd panic attack. The night before the scan was the worst. Questioning what they will see, how would I cope if the news wasn’t good, wondering if I’ll be one of the lucky ones. Tolerance levels are low, meetings with friends don’t happen. I know I’m crap company when my mind is elsewhere. I need to stop mid conversation when I start to panic and tell someone to shut the f**k up as I’m no longer listening, only just about breathing, but I don’t want to put my friends through that, or be rude, so avoidance is best and the intolerant, grumpy Ruth is for my patient husband.

The scan is becoming more tolerable, I request 80’s music and hold my breath to various songs from West End Girls to Heart Of Glass. Forty minutes later I leave wondering if the radiographer has seen anything. I take my bruised arm, from where the contrast was injected and some fetching red socks home as souvenirs. Socks and bruises, a constant reminder over the weekend that I’m awaiting my results. I managed to stay relatively calm over the weekend. I’m unsure how, I think it’s just the children don’t allow you the indulgence to spend time with your thoughts. Any minute I look like I’m not doing anything, I’m bullied into a swing ball competition or game of tennis. At the time I thought FFS can’t you just give me five minutes?! But in hindsight I’m glad I didn’t have those five minutes. The kids constant pestering allowed me to survive the weekend. And Sleep.

RESULTS

I felt calm until I stepped off at Baker Street station. Knowing my results were sitting on my jolly oncologists’ desk,  I felt like a child wanting to push someone to go in front. “You go first!” But of course I have to behave like an adult and  face the music. I felt sick, my husband felt confident. Confident it would all be okay, until they called my name to go up as jolly oncologist was waiting for me, that was when I saw the slight trepidation in my husbands face. The ‘what if?’ What if the results aren’t good?  We smiled at each other, encouraging smiles, now both feeling sick and walked in. Normally I’m greeted with an “all clear!” before I sit down, this time there was a pause as he mumbled something about the computer taking ages to load. Was he stalling till I took a seat? Did he want me seated to deliver bad news? The tumble of thoughts that go through your mind in seconds. And then, delivered with a big smile, the words I had been waiting to hear. “Scans all clear!”

The relieve is immense and exhausting. Straight away dates are discussed for six months time. Because this will never end. I questioned him about ‘the danger zone.’ He explained there is a peak at three years, once you get to ten, you can start to relax, although, and this is where he had a little giggle “I once had someone who got to 20 years before it came back!” My shocked face didn’t mirror his amusement and also managed to wipe the smile from his face.  He quickly tried to tell me that that was highly unusual and the treatments now to treat the liver are proving very exciting. He started talking about t-cells and shrinkage and 70% success and I thought, if anything ever happens to my liver, this man, who gets terribly excited about it, however hideous I find it, is the best person to take care of me. I’m in safe hands.

We wished each other a happy summer. I wished I was never seeing him again. He probably wished I had a slightly more diseased, exciting liver to be looking at. But that’s life, you don’t always get what you wish for. But for today I did. A happy ending. An All Clear Scan and a bottle of champagne in the fridge. It doesn’t get better than that.

Until next time. Cheers xx   unknown

We were all strangers once

 

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When I was first diagnosed with eye cancer, almost two years ago, I was desperate to meet others,  not just people with cancer, but specifically  with eye cancer. I searched for groups, but due to its rarity, there were none. This is where the online support group became a lifeline. Set up by the charity Ocumeluk, it’s a closed group where basically ‘stupid questions’ can be asked and normally a more intelligent answer is  given as a reply.

There have been murmurings over time about people setting up meetings. Getting together. But as time has moved on for me I was seeing this as something less important. Life takes over and I wasn’t  sure that I  wanted  a reminder about the fear, sleepless nights, and anxiety that befriends you and takes you in hand when first diagnosed. Keeping a safe distance was a healthy option for me. But when a ‘Facebook’ friend suggested a meeting I surprised myself by wanting to be involved, maybe it was because he was diagnosed at the same time as me, so we have messaged each other regularly over time with queries such as, ‘do you have a sore eye?’ ‘Can you see properly?’ and ‘Do you get scared?’ Over time we form smaller packs within the larger group. We are part of the Spring 2015 pack. We know who we are, some of us have moved on and had babies, some of us are having problems with our sight, and some of us are just putting our head in the sand whilst drinking bubbles, but that person shall remain anonymous.

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So that is how a  London meeting was set up. On Sunday I met up for lunch with eleven other eye cancer ‘friends.’ This is something I wouldn’t normally share as it is perhaps  of no interest to others, it merely requires a passing comment, a footnote, but I felt quite overwhelmed by the time I arrived home. Lying in bed that night I felt  emotional and I was trying to work out why and that is what I wanted to share with you today.

There are times in life we all feel that immense pride for others, strangers, that fill us with passion, inspiration and the feeling that life is there to be grabbed with both hands and lived. I feel it when I watch the London Marathon (yeah, yeah I know, going on about the marathon again! Did I tell you I ran one once?!), I feel it when I hear a story of how a youngster has overcome immense challenges to become the person they are today. Pride in strangers. And that’s what I felt on Sunday. I felt I couldn’t really do them justice by saying they inspired me, they are brave, it comes across as insincere and shallow. These people left me feeling far more than that. These people left me breathless.

One lady had arrived with her young, gorgeous children in tow and asked us, whilst they were out of earshot, to not mention that she is terminal as they don’t know that yet. Without pausing for breath she gleefully asked me if I knew where platform 9 & 3/4 was as the kids love Harry Potter. That was a moment in time I just wanted to shake her by the shoulders and question where it comes from? The ability? The strength? The perseverance? The whatever it is, I know that I lack and whatever life throws at me I know I will never have. In that second I wanted to remove my own leg and kick myself up the arse for being so pathetic. I was in awe.

It didn’t stop. We were amongst ‘friends’ where we could share stories and ask questions. A lovely elegant lady told me that she was conscious of her prosthetic eye, however much I stared I struggled to see which one it was and  when someone assumed  that it was her real eye, so asked her how her vision was out of it, we had a little laugh  as she responded “zero. it’s glass,” but I think that was the proof that no one else could tell, she looked amazing. She went on to tell us a story of how she had sat at the traffic lights once and was too vigorous in her eye rubbing. Yes you guessed it, the eye popped out! She was racing to put it in before any terrified passerby’s spotted it. There was no fear or horror from these stories. We were amongst peers, just as yummy mummies may share poo and vomit stories with no qualms, we shared our eye and cancer stories. One lady, far from home,   was working here whilst on a work visa when she was diagnosed, she has been dealing with this while being far from family and friends, again a moment when I wanted to boot myself.

Someone else made me realise I had missed a trick, as whilst in hospital having her eye dressing changed every four hours, she had decorated it with make up and pens in a different style each and every time. She then got so bored she started target practise with a nerf gun. I’m sure her aim was pretty poor so I wouldn’t have liked to have been her nurse. There was a gorgeous older lady, well passed retirement age who discussed research papers she had read about various treatments. I struggled to keep up with her sharp brain. And of course there was someone who may have noticed on my blog that I am fond of bubbles, so introduced me to the joining together of two of my favourite things. Bubbles and chocolate. And what is so wonderful about those two things are,  I can have them during the day without being considered an alcoholic.

So strangers no more.  Thank you, I felt truly privileged.  I feel a small  celebration is in order, so I’m off to pop a champagne truffle in my mouth.

Until next time.

Cheers!

I Choose Life

 

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Rosie keeping an eye on what I’m writing!

On a  cinema trip with the kids recently, a trailer came on for Trainspotting 2. I sat there feeling quite nostalgic, as the film and actors seem to have grown up with me. I was in my early twenties when the first film came out, I was a struggling single mum, trying to make ends meet and had probably made various poor choices in my life. Obviously nothing as bad as the trainspotting crew! And now here I was, twenty years later,  watching the trailer, thinking how the characters have all grown up and become sensible, like me. I am now happily married with three kids and a mortgage living a sensible, forty plus year olds life. Ewen Mcgregor’s voice than echoed around the theatre “I choose life.” he said, and I wanted to stand up and shout “That’s like me too Ewen. I choose life.” The only difference being will life choose me?

That’s one of the things that I find difficult to cope with, when I ask myself, will I still be around in a few years? When the kids laugh and make comments about what they will all be like when they’re older, what jobs they’ll have, how many children etc. I smile and laugh too, but have that fleeting dark cloud that crosses my thoughts that says “Please let me be there. Please let me at their weddings and meet my grandchildren. Please let me see what beautiful strong women they will grow up to be because I desperately want life too.” So as I’ve said before, I do everything in my power not to think about it. I keep busy with things and people that make me smile and laugh. I don’t want to spend time worrying about it. I want to spend my time having fun. It doesn’t always pan out how you want it to though.

Recently I had a little sabbatical from social media, but ended up missing family and friends and mainly my eye cancer support group, so was back on within a month. One month. Within that month someone very to dear to lots of people in the eye cancer UK community had died and various others have had bad results back form the dreaded liver MRI. One person I consider a kind friend was one of them. I had thought I’d be catching up with happy memories and stories but was instead brought to a brutal halt that cancer is still very much part of my life. It had got him, would it get me? I wanted to scream. Why? He chooses life too and nobody seems to be listening! Not only is it bad enough to have to play Russian Roulette every six months, waiting for it to spread, but many people than have to fund the treatment themselves. Why? Because the cancer is rare, it’s terminal, so where would you put the funding? To prolong a middle aged woman’s life for a year or to pay for a lung transplant for a young child. It’s brutal, but that’s it. We know we aren’t top of the funding list however loud we scream “I choose life!!” So if anyone is ever looking for a charity to support, Ocumeluk is one that supports eye cancer and us.

And just a little aside to prove my point that ignorance is bliss, my lovely, almost 15 year old cat Rosie isn’t very well. She arrived when my 21 year old daughter was seven. She saw the arrival of the next two girls, who were often heavy handed with her, as only toddlers can be. Many a time I had to tell them to not carry her down the stairs in a head lock as poor Rosie couldn’t breathe and not to body slam her.  She never scratched or bit them. She then saw the arrival of a very large bouncy labradoodle, who she made quite clear too, she was boss, and managed three house moves without ever getting lost. We have now been told she’s on limited time and it’s just palliative care. We are all sad and devastated. Well all, apart from Rosie. She doesn’t know! She is ignorant to it and is more than happy living off fresh fish and chicken and being given fresh catnip daily and as many laps to sit on as she wants. Middle child told me that “it’s lovely as she can live the rest of her life like a princess.” And she can. An ignorant princess, which is the way to go. So I’m off to pop a bottle in the fridge so we can be ignorant princesses together.

Cheers xx