6 weeks to go!

Photo on 14-03-2018 at 10.39


In six weeks time, it will be three years since I was diagnosed with ocular melanoma.  In six weeks time I will be having the dreaded MRI scan, which will tell me whether or not the cancer has spread. But more importantly, in six weeks time I will be running The London Marathon! Woohoo!!

Although feeling slightly less Woohoo! And more F**k what have I done?! My 19.2 mile training run yesterday was hard, actually that’s a lie, not hard, it was hell!  And my legs are feeling it today.  I also sustained my first running injury, see photo above. Who knew that a soft running top could cause such damage as it rubs continuously against your collar bone for three hours?!

I am feeling excited but utterly terrified at the same time. My thoughts, while awake and in my sleep are consumed with running and how I will manage. I get a surge of nervous adrenaline when I think about the day. A friend who I spoke to about how nervous I was, reassured me that my training was going well and I would ‘do it!’  I smiled through my rigid, tense jaw and didn’t voice the reason for my nerves. You see I’m not overly worried about  completing it, as I know I will, even if I have to crawl.  What I’m really worried about are two things. The first is doing a ‘Paula Radcliffe.’ Any runners reading this will know that toilet breaks are at times needed whilst running. Everything depends on what you eat, nerves, adrenaline etc. So I have been googling extensively what to eat and what to avoid to prevent such a catastrophe as a runners belly. I keep telling myself constantly to be careful on the sugary snacks but to consume enough to get me over the line. I know there are a lot of portaloos along the route, but I can’t imagine they are any fun to visit and must only be used as an absolute emergency. In fact I think I’d rather get the bus home, pop to the loo and then rejoin the race. Anyway the aim is no toilet breaks. Is immodium a good idea?!

The second concern is the jelly legged finishers. We know that we all love seeing them at the marathon, whether spectating there or watching on the telly at home. We enjoy seeing them, feeling for them and urging them on to the line as they stagger and sway as if they’ve spent all night in the pub. Can I just say, I DO NOT WANT THAT TO BE ME! I don’t want any phone calls saying “ahh Ruth, we spotted you on the telly…..you poor thing.” So again, google has been my best friend, as  I have been reading about why this happens so am hoping to avoid at all costs. Apparently  this all comes down to the fuel consumed and the timings said fuel are consumed. I feel a little like I’m preparing a Christmas dinner, where I write the timings down for when things go in to the oven. Mile 3 pop in first water, mile 5 first sport drink, mile 6-8 first carb shot and so on and so forth until mile 26!  Fingers crossed nothing goes wrong.

As time approaches I have been thinking of more ways to raise funds for Ocumeluk. So I have decided to auction off the name on my running vest. As long as I have my number I can call myself anything at all. So if you would like to have your name on the vest, or your kids name or dedicate it to someone special or just think of something highly amusing for me to run under, than all you need to do is go onto my fundraising page and sponsor me £5 per name and I will pull it out of a hat on Facebook live (justaneye.com) April 8th at 6pm. This has caused much amusement amongst my kids who are trying to think of the funniest or most insulting names they can. So far they have, Forest, (run Forest run), Squid ward, (the pink sad squid from spongebob), Stompy (elephant from the Simpsons) and Ruck Funning! Yes you can figure that one out for yourselves. When did my gorgeous girls change from “mama you’re a beautiful princess, be Cinderella, to these monsters?! Youngest even came home form school yesterday telling me her and her friends have been discussing it and they all…ALL..thought Stompy suited me best?! Why, because I look like a bloody elephant as I pound the streets of London?! Cheers girls! anyway if you would like to participate then follow the link below and leave a name in the message part, all proceeds will go towards Ocumeluk.

Anyway the other news is that the charity have put me in touch with their PR man re a possible newspaper article. Whilst asking questions he informed (warned) me that the style of writing is for newspapers so may be different to what I may expect. Little alarm bells stared ringing. He assured me I could check it out first. Thank god for that as I imagined being in the gutter press as ‘Dying, devastated, blind marathon runner loses control of legs and more as she staggers over the finish line. Ruck Funning from Hampton says “never again!”‘

Possibly not the publicity Ocumeluk were after!




The final countdown…..

Two family members taking the easy option on a bike!

Sorry this is a long one!

Harley street check up with my eye oncologist on Monday was boringly normal! Hurrah! Tumour same size, what’s new? But dead as a dodo at present. I always worry slightly though, can they come back from the dead? Do they become active again? Anyway mine isn’t which is great.

Took me a while to write this as I had a million thoughts whizzing through my brain. The main one is too many friends are succumbing to this disease. When I started on this horrid path,  being told that 50% go onto stage 4,  I felt scared, for myself. I still am. But now also for my friends. Friends I have made along the way, How were we naive enough to not realise if it didn’t happen to me, it would happen to you? How did we not think as we shared are fears, that perhaps one of us would not be here to listen anymore?  Who can we text at night to whisper “I’m scared, are you?”  when one of us is no longer there?

So results day for so many lovely people wasn’t bringing the joyous news they deserve, hence my slow reaction in shouting “hooray I had a great hospital visit.” Instead I went for a run, a long fast one. I cried. Luckily the rain hitting my face disguised the tears. I felt angry. Why do we have to wait and see? Wait and see whether you’re in the A team or the B team. Do you win or lose? It’s not good enough. More money is needed for cancer research and cures are wanted, fast. People shouldn’t have to pay for the only treatment that could prolong their life because it is still only in the research stage. People shouldn’t have to rely on trials where they may be the one getting the placebo. It’s not fair I wanted to scream from my aching lungs as I heaved myself up Kingston hill.

I made a decision as I ran, that the marathon is the end for me. I’m stopping my blog and leaving the eye cancer group. I’m sorry if it appears weak and unsupportive. I have made wonderful friends and they will remain friends, but I don’t want to make anymore. I want to protect them and me. One of us is going to lose this battle and I can’t face anymore of it.

As my thought process moved on I thought of the good that has come of my cancer diagnosis and there is some.  It dawned on me how far we have come as a family.  It’s taken me a while to realise this, but my children are the lucky ones. At the start I had all sorts of awful thoughts, one of which was that I desperately wished I had never had children. I couldn’t bare to see them hurt or in pain through what I was experiencing.  I felt sorry for them, guilty for what I had put them through, angry that it was now part of their lives too. I was hurt and saddened to see worry etched across their faces. I was scared and so were they.

But they have experienced it and they are no longer scared. The ‘big C’ is no more. Now they hear the word cancer and they don’t equate it with death. As a family we are very lucky as we have a few cancer survivors. No one in our family has died of cancer and I don’t plan on being the first. So my kids now think of it a bit like running a marathon. It’s a pain, you have to go through all the treatment, it’s a bit of a long haul,  but they believe you will come through the other side. And that’s a good place to be, living with hope and belief and being without fear. They are the lucky ones.

Many adults have a fear of cancer.  But some peoples’ alarm always seemed a little irrational or weak to me. I think that was due to my nursing experience. I have been with people who have lost loved ones, seen children cry as parents were ripped suddenly and tragically from their lives. Through this I never became desensitised, but you do end up being a little matter of fact about it and not scared. It’s life. You hope it won’t happen to you, feel desperately sorry for the people it happened to, finish your shift and go home to have dinner with the family. You move on. You don’t forget them but you have to be able to compartmentalise your life otherwise you would never do the job. I learnt very early on that you can’t share with friends and loved ones  what you have experienced, as people are horrified and frightened. So you may just say “a young mum died today.” Rather than “a young mother with four small children has been dying on my ward for the past month. She has had surgery but it was unsuccessful. She is in excruciating pain but tries to hold it together when her children visit. She cries like a wounded animal at night as we desperately page the pain team so we can get it under control. We are trying to get her into a hospice to die so that she doesn’t have to die behind a curtain on this four bedded ward. We are waiting for a bed for her. Which means we are willing someone else to hurry up and die in the hospice so that she can have their bed. We are being offered counselling from the hospital as it is so distressing caring for her and we are rotating shifts so that no one is with her all of the time. Her husband is about 6ft 5 and looks like a tiny child.”  I remember this woman with absolute clarity and her four children. She never made it to the hospice. I was 23 years old trying to make sense of it all.

Why am I sharing this story? Because it is these things that shape us into who we are today. I look back and wonder if I helped her? Was I a good nurse? Did I care enough? I know I would be so much better now. It’s when you compare your younger self with the person you are today, the hurt and life experiences we have had over the years, that have shaped us into caring and sensitive people, who can show understanding and empathy. It  helps us to help others. And due to what my kids have experienced they have some of that, the empathy, the understanding, at their gorgeous tender ages, which will shape them into wonderful people as they travel through life. So they are the lucky ones.

My eldest daughter had a call recently from a friend asking her advise, as someone they knew had been diagnosed with cancer. “What do I say to her?” She pleaded with my daughter as my eldest nonchalantly munched through a bag of crisps wondering what words of wisdom she could  share. I asked her what she had said. She shrugged, “not a lot, cancer doesn’t mean you’re going to die. It’s fine.” I though at the time well a fat lot of help you were! But actually it was the perfect answer, said without drama, said without angst, said with such little fanfare that the ‘big C’ was brought down  to size. It lost its power. It was as if she was describing the weather. Now move on to something more interesting. And it was perfect. When I was first diagnosed with cancer peoples reactions scared and upset me. Seeing the fear in their eyes or them crying made me feel like I was already 12 feet under. If I had had someone like my daughter who had just shrugged and said “whatever” maybe it would have saved me months of anxiety! Now I’m not suggesting that’s the right response when someone close calls to say they have cancer, a shrug and a ‘whatever’ and then moving on to the KFC chicken crisis probably won’t cut it, but you get my drift?

On a final positive note, I was googling fuel to consume for long runs and somewhere in Runners world I found the perfect article!

Boost Cardio

Champagne: Raise a glass to your heart, say Reading University scientists. Their studies found that the polyphenols in bubbly reduce the loss of nitric oxide from the blood, improving circulation. Per week: 3 glasses

Only downsize  is obviously the 3 glasses per week!

Cheers and lots of love until next time.

Ruth xxx


Spring has sprung


Walking my gorgeous labradoodle Barney in the park yesterday I noticed the crocuses were out and a surprising solo fat bee was spotted. It could only mean one thing…. the marathon is getting closer!

Remind me why I wanted to do this?! Oh yes it’s for a good cause. It’s for charity. What was I thinking? It seemed a good idea back then in the summer. The weather was good and I had visions of just ambling along to the finish line in April without too much of an effort. Was the last hideous nightmare of running the marathon so awful that it has been erased from my mind? How had I fooled myself into thinking this would be fun?

But I have pushed myself out religiously, three times a week since this started back in August.  Even throughout January on some bitterly cold mornings. I have become a bit of a weather checker to see when the best day to run is. I have ‘strava’ on my phone to record my times and yes, there have been  evenings where I may have glanced back over it, ‘impressed’ with my progress! Where has this imposter called Ruth come from? I have even been accused of turning into my lycra and carbon fibre loving husband. Yes things are that bad. It has become a bit of an obsession. My Running World magazine drops through the letter box and I ‘can’t wait’ to read it!!! I have ordered a food shop with lots of non-alcoholic sparkling wines (they are actually very nice), and am obsessed with what fuel will get me round the course, even attempting home made flapjacks rather than ghastly running gels.  What is going on?!

Well I think I know and I shall try and explain. When I last did the marathon I hated it. I really actually quite resented it. It encroached on my life and made be grumpy. I just wanted it over. I did it just so that I could say “I’ve done it.” Which I said a lot. It was a tick on the bucket list and not a very inspiring reason. The difference with this marathon is the rationale for running it.  This time round I need it.

As you all know running has given me something else to think about other than cancer. It has definitely got me though my darkest days. Sometimes running with tears streaming down my face as I wait for results or when I think about not being there for my family.  Running tires me physically when my mind won’t stop the “what if’s?” It exhausts me so that when my head hits the pillow it allows me to sleep. It makes me feel well so I can convince myself that there is no more cancer. And I have lost 10lbs and have buns of steel!! What’s not to love? A friend commented recently that I seem more enthusiastic this time round and I am, because I feel so well on it. That feeling gives me peace and allows me to sleep.

As I approach the 3 year mark I know it will be hard, as it is the time many of us eye cancer lot have in our minds as ‘the average time it takes to get to the liver.’ I know I will need running more than ever then, which is lucky, as it will coincide with my longest training runs! So however much I still don’t love running, my need for it gets me out there. And of course I am  running for a fantastic charity, Ocumeluk,  which has allowed me to meet some quite wonderful people. Some of whom are no longer with us, some are still fighting their very courageous battles, a lot of whom show me strength and determination that I know I lack. And many of whom leave me in awe of just how they do it.  So for all you lovely OM’ers this marathon is for you and for my need to sleep!

p.s Next eye check is in February. All seems good on that front so not worried. Will keep you posted.

Ruth xxx


The Sniper

Well worn muddy trainers!

It’s been over 2 months since my last blog. I hadn’t realise the time slip away. There has been no reason other than I haven’t thought about it. Which equates to I haven’t thought about my cancer, which is a good thing.  I say ‘my’ cancer because I have been thinking about others peoples’ cancer. Other people with eye cancer that we have lost recently to this dreadful disease. Friends who haven’t had good news from scan results and are waiting for what comes next. More treatment hopefully. Treatments that work and can conquer the awful liver mets. Liver mets, the thing that gives us all sleepless nights.

It still shocks me how relentless and cruel cancer is. Getting bad results just before Christmas, or on birthdays or when you have to attend a child’s parents evening never seems right. But of course cancer doesn’t hold your diary and work out the best time to deliver devastating news. Is there ever a best time?  “Oh you’re blowing up balloons for your daughters birthday party? Sorry to disturb you, but you have something suspicious on your liver. Enjoy the cake and we’ll discuss options next week.” Relentless. Cruel. So my thoughts have been with them. Friends who are waiting, hoping for a cure, and slowly as you think of them, the fear creeps in. You can’t help it or stop it. So I keep my head down and keep busy.  Don’t write a blog, don’t draw attention to yourself, cancer may not notice me and move on to someone else.  I think of ocular melanoma as a sniper,  slowly picking us off  with what seems like no rhyme or reason. People with the same size tumours, same treatments,  have very different outcomes. I try and make sense as to why that person has died and I’m still here, but at the moment there is no sense to it. I hope research eventually explains the why and can give us treatments, so my friends don’t have to lose hope. I’m willing on these amazing immunotherapies so that they can come and quash the sniper, before he strikes again.

Now as most of you know, I am running the London marathon in April for Ocumeluk, the fantastic charity that helps us rare, unique eye cancer bunch with everything from practical appointment things to the more heavy emotional stuff. So just a little update on how it’s all going. Very well thank you!!  I’m shocked. My long runs are now 12 miles!! I can’t believe it. And I haven’t suffered a single blister yet. When I first started training I was running just over 3 miles and I just wanted to cross the finish line, but naturally as you run and improve, you start setting yourself little goals. I have two. The first is to beat my last marathon time of 4 hours 36 minutes. Hilariously to do this I thought the easiest way to achieve this would be to tell my husband and kids that I won’t be stopping to ‘chat’ with them when they come and support me. I haven’t broached that with the kids yet as my youngest was asking if she could make a banner and often cycles with me while I run. Could I pretend not to see them or not hear them when they call? Ha Ha! Get them back for calling me deaf and blind! Yes I know I can’t that would be mean,  I won’t have any choice but to stop, damm that just means I am going to have to just train harder!

Anyway, my second  goal is to run Richmond park  in under an hour. Now those that know Richmond park will know it has some ghastly hills. When I first did it in September I crawled up the hills and finished in 1 hour 15 minutes. Chuffed to bits, red in the face, looking like I was having a heart attack, but I did it. Yesterday my time was 1 hour 1 minute and 20 seconds! Woohoo!!

So I’m thrilled with how it’s all going. But just to clarify that I haven’t turned into a boring athlete who checks strava every few minutes like some people (Mr J!!). I’m still not a natural runner. I don’t look forward to my runs, I look forward to the end of my runs when I can eat and drink what I please.  A friend asked me today with all the training I’m now doing have I stopped drinking? What?! Of course not! I have eye cancer. Not insanity!!

So cheers to many more ‘end’ of runs. Fingers crossed for many successful treatments on the horizon for our friends and if anyone would like to sponsor me just follow the link below.

Ruth xxx


Roll on the birthday season.

Normally I prepare for my November birthday in about September. Buying little presents for myself to put away -which I never do – and thinking about which restaurant to spend the evening in. Now I have scans and appointments hanging over me, the sparkle and shine of birthdays is well and truly gone. My husband will ask what I want and where I want to go, things are booked, the family all looks forward to it, but I just feel frustrated that I have a huge “what if?’ hanging over me.

So on Monday morning I spent the morning in the MRI machine. I hate it,  It takes me about the first ten minutes inside to calm down and stop thinking that I am trapped. I did eventually manage it and generally just felt pissed off with being there. It was a beautiful autumn day and I spent it in a clinic. On the plus side though I was no longer wearing the hideous red hospital socks. A lovely friend had bought me some gorgeous soft cashmere ones to help with the hideousness of scan time and they did help. So thank you.


The trains were delayed on the way home, so scan day took the best part of a beautiful day. I messaged a friend who is going through the same thing as me and we agreed that we both have thoughts of saying no to scans. What will be will be, but of course we know that if the worst happens we would feel hugely irresponsible, to our families mainly, so we are just trapped in this awful cycle.

Anyway results were due two days later. I couldn’t cope with another journey to Harley street, I have things to do and don’t want to spend an hour on a train wondering what the results will be. Having time to sit and think is not your best companion at this time. My friend suggested e-mailing the consultant and asking for a telephone consultation instead. Definitely the way to make my life easier. He agreed, so all I had to do was just  sit and wait for the phone to ring.

In between this hideous wait fell Halloween. Which, for my kids is up there with Christmas as the best day ever!  Pumpkins had been carved by my artistic drama one….



….sweets had been bought, cobwebs scattered. They had invited friends over, so I had a house full of ten girls applying fake scabs and  blood over themselves and my walls.  The doorbell was ringing constantly with the gorgeous trick or treaters and my mind was wondering what the results would be?

So out into the night we went to join all the other over excited, sugar pumped kids, me at a discreet distance as my 11 year old is now “old enough to go on my own!”

“I know” I respond, “I just want to soak up the atmosphere and check your friends are okay?” Hoping she won’t see me for the truly neurotic mother I am, and this is where is happened. My sudden reminder that all is not okay. My husband had called to say he was home but didn’t have a key. “Cut through the flats” I explained,  “I’ll give you the keys there.”  So with the kids happily knocking on doors I ran into a well lit communal garden to hand over said keys to my husband. As I did I stumbled down a step, one that I hadn’t seen. No harm done. After the usual small chit chat I said goodbye to hubby and turned to run after the kids. Thinking briefly ‘now where was that step?’ as I came crashing down to the ground. My knee hurt so much I broke out in a sweat and thought I was going to vomit. Mr J came rushing over “Oh Rufus! I heard you fall. Are you okay?!” Now I was feeling bloody awful, but still all I could think was “heard? you heard me fall? What am I some baby bloody mammoth? I thought all this marathon training was meant to make me as light as a feather?”  Surely he was mistaken, I must have let out a little lady like “whoops” as I fell? I shall convince myself that is what he heard. Anyway I told him that the step was difficult to see, ignoring the search spotlight that seemed to be over my head illuminating said step, and ignored the thoughts running through  my mind where the kids have recently been telling me that I have ignored waiters or people on trains as I’m ‘not seeing them’ on my left side. “It’s difficult to see” I said to hubby, trying to convince myself more than him. So feeling shaken and emotional I went back to join my gorgeous daughters as they knocked on strangers doors begging for sweets.

So with Halloween over for another year,  today brought with it a bruised knee and an early morning call from my jolly oncologist. “All clear Ruth!” Have a great Christmas and see you next year!”

Still feeling a bit emotional from falling, not sleeping and worrying, I felt like crying. Yes I bloody will, I thought, but first I have a birthday coming up and my presents won’t buy themselves. I have a few months worth to catch up on!

On the marathon front, I’m up to 10.5 miles!!! I can’t believe I have ran that far?! So if anyone would like to sponsor me, raising money for Ocumleuk please just follow the link. I’m off to pop a bottle in the fridge as it’s November. My birthday month!

Cheers xx


9 down – 17.2 to go!



I thought I’d better quickly write a blog as I’ve just gone live on my Virginmoneygiving page and I mentioned my blog on it. I thought if people think ‘oh I’ll give the blog a look’ and then see that I’m a lazy cow who hardly writes that often, they may equate that also to my running and decide not to sponsor me, as they can’t imagine me getting my fat lazy arse over the line. But no that’s not me. I can write and run and will be proving it as the months progress. Photo above is proof that I do get sweaty and run and I am now up to 9 miles! Feeling like those buns of steel are coming along nicely and I’ve lost nearly half a stone! The only unfortunate thing is that I must have actually put a fair bit of weight on over the summer as nothing actually feels loose yet, more that my jeans are no longer acting a s a tourniquet. But hey ho it’s all going in the right direction.

So my eye check up was yesterday and I’m feeling pretty relaxed as I’ve decided not to have the hideous injections.  I was calm and open minded as I went into my appointment,  as I had managed to quieten the voice in my head that was screaming “there’s no way you’re letting anyone poke a needle in your eye!” Luckily for me a couple of  weeks ago I felt my sight had improved. I was walking with a friend in Bushy park, which has lots of red deer, many which are rutting at the moment and although I couldn’t quite tell if the large stag looking in our direction was charging us or standing still, at least I could see it! (It was standing still.)

Anyway, at my eye check up my feelings were proved right as my eye test did show improvement, the fluid had again disappeared of its own accord. Now there is still a little bit left and I was offered the avastin injections for this, but with my eye and my position of my tumour, the ischaemia is spreading to remove all sight. The injections don’t help this, they help the oedema. My consultant thought maybe the injections could work for two years until the ischaemia took over, but it is like asking how long is a piece of string? She explained the side effects are pretty low, the main one being a risk of infection and some people see floaters. I have no problems with my eye at present and I can’t be bothered to go through the aggro of having injections monthly for such a short term benefit. I was secretly pleased she didn’t say “Oh Ruth we are looking at perfect vision for the next ten years!” Then I would have had to give them a try or admit I’m a chicken.

Anyway what proved somewhat amusing to my husband (not me) was she was very interested in what I have been doing differently recently? What could have caused this spontaneous improvement? I answered “nothing has changed.” whilst thinking, just lucky I guess. Helpful hubby on the other hand decided to put it all down to my running. “Yes” She agreed, “It may have had an effect.” This is where Mr J roared with laughter at his own humour “Oh Rufus, you were looking forward to taking off your trainers in April! Now you won’t be able to unless you want injections in your eye!” Ha bloody ha! I wanted to poke him in the eye with an injection. But now I have another motivation for running the marathon on those cold January training days, firstly raising money for Ocumeluk, secondly obtaining the body of a supermodel, thirdly keeping mentally sane and finally keeping the dreaded eye injection away! Sounds all good to me. They may not all be in the correct order, don’t judge me, I mean who would  prefer a body of a supermodel over mental stability?  But umm, I’ll just leave it in that order for now.

If you would like to sponsor me you can follow this link


Not actually sure that link works but if you google virginmoneygiving and search Ruth Johnston -running for eye cancer, it should pop up.

Thank you all. I’m off for a lovely curry and bubbles tonight, guilt free, as now I am such an amazing athlete I can eat what I please. Cheers!!

Ruth xxx


Just an eye



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.


Ruth xxxx

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!


The Marathon Runner!!!



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

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