The Sniper

IMG_7482
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

Advertisements

Roll on the birthday season.

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

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

IMG_7052

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….

IMG_7042.PNG

 

….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

Just an eye

aw340_ba

 

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

IMG_4635
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

Regular Eye Check

FullSizeRenderIMG_4734

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

Unknown

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.

 

 

Worrying about whether I have anything to worry about.

 

unknown

So most of my appointments I’m accompanied by my husband as two ears (well three, if you actually count his two and my one), two views, two opinions are always better than one. But  on Wednesday  I trundled up on my own, as the appointment time was late and we had come down with a houseful of sick kids, Mr J was waiting at home as I reassured him I really wasn’t worried. Google found no horror stories so everything was good. I should know by now never to feel complacent, because this rare cancer sh*t will always grab you by the ankles, shake you and yell “what do you mean you weren’t worried?! Fool! Have you learnt nothing from this?!” No, I just like to stick my head in the sand.

Anyway I digress. I was met by my very thorough, conscientious, consultant, who definitely never leaves any stone unturned. She informed me that she had wanted to see me as the grey pigment from the ‘very good’ photos I had taken, could be one of three things. “The first, it could be the tumour growing through the white of the eye.” Sorry, what?! F**king google didn’t tell me that! I now wanted my husband sitting next to me. How did I think this was going to be O.K? I instinctively brought my fingers up to my eye, it was smooth, no bumps, surely not the tumour growing? Hang on a minute wasn’t I supposed to be in f**king remission?! She was continuing,”secondly it could be thinning of the sclera (white of eye) due to radiation.” Yes, I was thinking, that’s definitely what it is, “thirdly it could be the white cells called macrophages that come to mop up the debris of a regressed tumour. They sometimes leave pigmented staining on the eye. So let’s examine you and see what it is?”

My eye test was strange. Imagine a frosty windscreen where someone has just scraped away sporadic areas,  well this is what my left eye is like. I could read the same line as last time, but only because I was moving my eye up and down and to the side so I could pear through the clearer area of the windscreen. Then my eye was dilated and as I was waiting for the drops to take effect I had the ultrasound done on my eye. It’s very easy, you just close your eye, jelly is placed on your eyelid and then the probe just rubs gently over your closed lid. Measurement, 7.5 by 1.5, my heart started beating, that’s not right, it was 7.5 by 1 last time? It can’t have grown, I’m in remission? She moved the probe to another position so that she could see if she could get the previous measurement, it’s quite a  difficult thing to do as there are no markers as to where you measured from before, finally she said I think it’s the same, there just appears to be fluid there. Is that bad? Is that the tumour active again. No she reassured me, it’s due to the radiation. She then asked the question which has been keeping me awake at night since I saw her “How often are you having your liver scanned?” Why? Have you seen something that worries you? She smiled, “no, its fine, but I would like to see you in a month.”

My now dilated eye was examined and the grey pigment was confirmed as white blood cells, macrophages, clearing away the debris, I didn’t care about the bloody macrophages any more, I was wondering if she would be contacting my jolly oncologist like she did last time she was worried. But she smiled, she wasn’t worried, it is just better to keep to the routine of January appointment and then four monthly. Yes that makes no sense to me either. Why can’t I be four monthly now if there is nothing to worry about? We said our goodbyes, wished each other a Merry Christmas and I stepped out onto the street to call my husband and repeat everything that was said to me. I needed his opinion as I wasn’t feeling great. I left him with “why did she ask about my liver? she knows how often I have it scanned. She had just said to me your liver scan was clear in October? Why did she say that?”  Difficult questions to a now also worried husband. “I don’t know” Was the only response as both of us tried to find a viable answer. ‘I’m sure everything will be ok’ Is never the right response, something we both know.

I think everyone with a cancer diagnosis must spend so much time second guessing what is going through someone else’s mind. Wasting so much energy, worrying and  wondering if there is actually  anything to worry about. I hopped on the tube and made my way home. The evening was spent liaising with the wonderful people on my Ocumeluk closed Facebook group. I have come to the conclusion, with their help, that there isn’t anything really concrete to worry about, if there was she would have been straight with me. I think it is all quite difficult as it is such a rare cancer. The consultants don’t have vast amounts of research or previous patients with similar symptoms to reassure themselves and us that this is par of the course. No one really knows what par of the course is with occular melanoma. So it is best to upturn every little stone along the way.  Someone said “it should offer you reassurance that they are keeping such a close ‘eye’ on you” and yes I’m hoping that that feeling of reassurance will soon take over from the feelings of worry.

In the meantime I will concentrate on all the lovely things Christmas has to offer, mulled wine, mince pies, lots of chocolate and of course very cold, very bubbly bubbles!

A lovely friend told me that because I mention bubbles all the time and once signed off from my blog with a ‘my name’s Ruth, Im 43..’ I sound like an alcoholic signing off from AA. I told her she could have bloody told me that before I published it, rather than days later, when the 3000! Yes 3000 people viewing it have already made their opinion on me!

Anyway, just to reassure everyone I have a dodgy eye, not a dodgy liver -yet!

Merry christmas to you all. See you in January!