ocumeluk

The Finish!

~ justaneye73 ~ 3 Comments

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I did it! Not sure how? The heat was pretty unbearable. Crossing the finishing line was the best feeling ever. I ran slower than all my training runs and at no point seemed to be able to muster up any sort of energy to make my legs work. When I was walking for large chunks of it, I was trying to give myself a motivational talking to. Trying to think of everything I’ve been through over the last three years. Thinking of friends lost and friends that are fighting the spread of this disease. Thinking of my children waiting at the finish line, everyone that has supported me and were following my progress, but no, nothing worked. I just wanted to slump down on the hot tarmac and sleep. I remember at one point the runners ahead started cheering as they turned a corner. I wondered what had caused the excitement? I turned the corner and saw Tower Bridge looming ahead of me in the glorious sunshine, the half way mark and still all I could think was, how am I going to get across this huge bridge and how can I possibly only be half way?! What are you cheering at you idiots? Don’t you realise we have another 13.1 miles to go?!! Yes, I was perhaps the only grumpy one on the course.

Gaps in the crowd were enticing me to escape and go home. Nausea was building and I wondered if I quickly vomited on the sides would someone take a photo? I opted for deep breathing and a walk/run strategy, as even in my darkest moment I still didn’t want to be splattered across a newspaper while I was splattering the pavement with the vile contents of my stomach. People were collapsed all over the place. Paramedics were stretchering people off, St Johns ambulance were rushing to massage cramping limbs and the crowd were shouting your name in encouragement,  handing out sweets, food, cut up oranges and even ice-lollies. I passed the amazing Grenfell Tower firemen in their full outfits. We all applauded them as we passed, having a moment to reflect on their story and their amazing efforts to raise money. I didn’t see as many people in fancy dress this year as I guessed the heat put paid to that and it was quite nice to not be overtaken by rhinos and people carrying fridges on their backs!

Finally I reached the Embankment, I kept looking at the London Eye and thinking that’s it, that’s the point where you turn right and head to the finish. Just keep running, this hell is nearly over. The quicker I get there, the sooner it stops. The approach to the finish is littered with signs telling you in meters how far is left. It is meant to spur you on, but for me, when the sign said 400 metres to go I physically slumped my shoulders and started to walk. 400 metres? That was forever! Just one foot in front of the other I kept chanting. 375 yards to go, why can’t I see the finish line, how many bloody bends after that? Two!! Just in case anyone running it in the future wants to know. And then, in all it glory, finally, after four hours and 44 minutes was the bright red finish line. Then I ran. I was desperate to cross it.

The medal was put on, the goody bag handed out and I headed out to meet my family. My gorgeous family. Youngest got her well deserved medal as she whispered to me that she was really proud of me. Not as proud as I am of you.

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My eighty year old dad hugged me as he told me how worried he had been, “I said a prayer for you last night” he informed me. My dad worries about everything. If I get on a plane he thinks it will come down, ff I plan a safari holiday he’ll tell me a story of someone either being eaten by lions or trampled to death by elephants. So in his mind I was possibly going to be the one collapsed somewhere on the course. So we were both as relieved as each other that I had finished.  Mr J. was proud and excited and when I eventually saw my other daughters (they had got a bit lost on the stairs down) I could relax. We were all together again. Eldest daughter even said I had inspired her to run a marathon! Watch this space!

The week leading up to the marathon was obviously hard with my scans and results. It’s a dark time but luckily for me my results were all clear. I was going to blog while it was going on but didn’t want to spread the gloom cloud, especially as the sun was shining so I opted out.

When I was diagnosed with eye cancer three years ago, I searched and searched for patients stories, blogs, happy ever afters. I struggled to find them. A lot of stories I found were of  people that had sadly passed away or they only wrote them for about six months and I was left with a ‘what happened next?’ I realise that it’s just life. People that have an illness want to learn more about it and may share their stories, those that are better tend to move on, so therefore the blogs dry up. I started this blog with the intention of sharing it for longer. So that it would help someone like me in the future and not leave a ‘what happened next?’ I was hoping people would read it and think, she’s still here, she’s still going. it’s not all bad, because yes about 50% of people go on to develop metastatic disease, but remember, 50% don’t. I haven’t. My scans are clear, only about a quarter of my sight has gone and I tend not to think about cancer at all. So if you have just been diagnosed, don’t be scared. Life does go on.

Now three years later I have not just reached the finish line of the London Marathon but also that of my blog.  So a huge thank you to everyone that has read it. I hope it has helped a few people along the way and raised awareness of our rare little eye cancer that makes a huge impact on peoples lives. I am now off to have a massage on my legs, pop a bottle in the fridge to celebrate and live my life.

Love and best wishes to you all.

Cheers

From justaneye xxxx

10 Days to go!

~ justaneye73 ~ Leave a comment

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Firstly, apologies to people who are visiting my blog expecting it to be about eye cancer. It is usually, just at the moment it has turned into an obsession of a middle aged mum about running and marathons.

So in 10 days I am running the London Marathon for Ocumeluk. I am terrified, even though  my training has gone really well. At the beginning I set myself two goals, one was to beat my last marathon time of 4 hours and 36 minutes and the other was to run around Richmond park in under an hour. I managed the second goal last week with 2 minutes to spare. So I was feeling good,  I was feeling prepared and with all my long runs completed,  I was  looking forward to the ‘taper.’

For those that don’t know what a ‘taper’ is , it’s when us ‘athletes’ cut down our mileage to allow our bodies to repair. For me I couldn’t give a f**k about a repairing body,  I just wanted this hell to stop.  The closer I got to ‘taper’ and cutting down my running the better I was feeling. Bring that taper on I chanted to myself, as I pounded round Richmond park for the 26th time since my torture/training started. Have I been counting? Yes. Every step of the way! When I completed my last long run, a 22 mile beast, I wanted the taper to be a physical element that I could hug and squeeze or drink (the alcohol variety, not water) and shout yes I’ve f**king earned you! And what happens? I get a cold. A sore throat. A foot injury. A blister. More bloody chaffed collar bones and slowly the mind games seep in. The doubt that you’ll ever manage to cross that finish line.  If this is how 22 miles broke you, what will 26.2 do?

So I do what everyone does when they are in doubt and scared, like we all did when first diagnosed with cancer, I googled! And the relief flooded in. I read that many ‘athletes’ find that when they taper they catch a cold. Hurrah!!! I am a top athlete. A 44 year old woman, half deaf, with slightly dodgy sight on one side has lots in common with top runners! It may just be a cold and a blister on the inside of my heel but it’s a start.

Anyway forced rest and no running has sorted out my foot injury, so hopefully come the day all will be good. Except of course the other major issue. The weather. For those reading this living in Britain and Ireland (my aunty!) I don’t need to remind you all of what we have endured weather wise since possibly October.  What I have endured for my training since possibly October. But for those lucky enough to be reading this from a warmer, sunnier climate, let me enlighten you. Our weather has been SH*T!!! I have run in rain, wind, hailstones, snow, ice, sleet and the beast from the east!!!

Spring started (nobody noticed) and with it came snow. Kids Easter holidays were a wash out and for some poor buggers more snow came.  Memories were popping up on Facebook of past holidays at this time of year and people were in shorts. Shorts?! T-shirts?! What the hell are they? I’m still in a ski jacket and thermals and it’s the 12th of April for petes’ sake! So with all the preparation and training I have done, what I  haven’t managed to do is run in  any sort of sunshine.  But hey the weather can’t change that drastically between now and the marathon can it?  Can it?! We live in bloody Britain of course it can! So you know what we have coming our way? Yes that right. A bloomin’ heat wave!!! On the radio this morning they were squealing with excitement as we will be basking in sunshine all of next week. We will be hotter than Ibiza, warmer than Greece. frying eggs on the pavements and I shall not only have jelly legs crossing the finishing line but now also run the risk of being delirious from sun stroke!

Anyway, next week is a busy week for me, so hopefully will keep me off weather watch and stop me scowling at anyone enjoying the sun. I have my MRI scan, results and a visit to the Expo (other side of London to where I am)  to pick up my running number. I arranged to have my MRI before the marathon so that I would have it behind me. I’m not totally convinced it was the right move, as usually  comes with it sleepless nights, not conducive with feeling rested and energised on the big day. Anyway with the scan on Wednesday and results Thursday. if all is well, hopefully I will catch up on my sleep then. If not then I will be properly delirious making my way round the course. Sunstroke or not!

One more slightly off topic thing, I have to do a little shout out here to my youngest daughter. She desperately wanted me to run the marathon, as to her, a fit runner equates to a healthy person without cancer. My other two daughters know that I am well. Youngest worries, so when she sees me run it reassures her.  She pleaded with me to apply. “Please mum! It will be so good. Please! I’ll train with you. I’ll cycle with you. Even when the weather is bad I promise I’ll come with you.” Well. as my kids always manage to bully me into what they want, I found myself saying “okay then.” Hoping I would never get a place! Fast forward a few months and I can say she was true to her word. She was there on the majority of my big runs, rycles she named them, only missing them when she was at school. She accompanied me on my longest 22 miler chatting incessantly all the way. The worst was a 15 mile rycle we did in hideously cold sleet. She was frozen but never moaned. Even when she was exhausted she would tell me to wake her in the morning so she could be with me. She even said it’s a shame bikes can’t come on the course as she would happily keep me company on the big day (probably a good thing, as I would want to to push her off and nick the bike!) We have enjoyed many jelly babies together and discussions on “what next?”

So, I am running the marathon to raise money for the wonderful charity Ocumeluk, but if and when I get over the finish line, Tessie Bear, that medal’s yours poppet. xxx

6 weeks to go!

~ justaneye73 ~ Leave a comment

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!

https://uk.virginmoneygiving.com/ruthjohnston73

 

The final countdown…..

~ justaneye73 ~ Leave a comment
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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

~ justaneye73 ~ Leave a comment

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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

https://uk.virginmoneygiving.com/ruthjohnston73

The Sniper

~ justaneye73 ~ Leave a comment
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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

https://uk.virginmoneygiving.com/ruthjohnston73

Roll on the birthday season.

~ justaneye73 ~ 2 Comments

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.

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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….

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….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

http://www.virginmoneygiving.com/ruthjohnston73

9 down – 17.2 to go!

~ justaneye73 ~ 3 Comments

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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

http://www.virginmoneygiving.com/ruthjohnston73

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

 

For David

~ justaneye73 ~ 6 Comments

 

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

We were all strangers once

~ justaneye73 ~ 3 Comments

 

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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!