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!!!