The final countdown…..

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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

 

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Spring has sprung

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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

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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

9 down – 17.2 to go!

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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

 

Just an eye

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

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

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

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

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

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

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

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

Until next time take care.

Cheers

Ruth xxxx

Ocumeluk

 

Photo on 02-08-2017 at 14.47

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

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

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

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

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

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

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

Thank you lovely people. Share! Share! Share!

Ruth xx

 

 

Slowly, Slowly

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We can still see you!

 

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

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

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

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

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

Have a great summer all.

Cheers xxx

For David

 

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

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

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

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

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

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

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

You will be missed. Be at peace.

Cheers my friend xxx

Regular Eye Check

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

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

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

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

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

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

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

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

Jacqui’s Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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