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.

 

 

We were all strangers once

 

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When I was first diagnosed with eye cancer, almost two years ago, I was desperate to meet others,  not just people with cancer, but specifically  with eye cancer. I searched for groups, but due to its rarity, there were none. This is where the online support group became a lifeline. Set up by the charity Ocumeluk, it’s a closed group where basically ‘stupid questions’ can be asked and normally a more intelligent answer is  given as a reply.

There have been murmurings over time about people setting up meetings. Getting together. But as time has moved on for me I was seeing this as something less important. Life takes over and I wasn’t  sure that I  wanted  a reminder about the fear, sleepless nights, and anxiety that befriends you and takes you in hand when first diagnosed. Keeping a safe distance was a healthy option for me. But when a ‘Facebook’ friend suggested a meeting I surprised myself by wanting to be involved, maybe it was because he was diagnosed at the same time as me, so we have messaged each other regularly over time with queries such as, ‘do you have a sore eye?’ ‘Can you see properly?’ and ‘Do you get scared?’ Over time we form smaller packs within the larger group. We are part of the Spring 2015 pack. We know who we are, some of us have moved on and had babies, some of us are having problems with our sight, and some of us are just putting our head in the sand whilst drinking bubbles, but that person shall remain anonymous.

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So that is how a  London meeting was set up. On Sunday I met up for lunch with eleven other eye cancer ‘friends.’ This is something I wouldn’t normally share as it is perhaps  of no interest to others, it merely requires a passing comment, a footnote, but I felt quite overwhelmed by the time I arrived home. Lying in bed that night I felt  emotional and I was trying to work out why and that is what I wanted to share with you today.

There are times in life we all feel that immense pride for others, strangers, that fill us with passion, inspiration and the feeling that life is there to be grabbed with both hands and lived. I feel it when I watch the London Marathon (yeah, yeah I know, going on about the marathon again! Did I tell you I ran one once?!), I feel it when I hear a story of how a youngster has overcome immense challenges to become the person they are today. Pride in strangers. And that’s what I felt on Sunday. I felt I couldn’t really do them justice by saying they inspired me, they are brave, it comes across as insincere and shallow. These people left me feeling far more than that. These people left me breathless.

One lady had arrived with her young, gorgeous children in tow and asked us, whilst they were out of earshot, to not mention that she is terminal as they don’t know that yet. Without pausing for breath she gleefully asked me if I knew where platform 9 & 3/4 was as the kids love Harry Potter. That was a moment in time I just wanted to shake her by the shoulders and question where it comes from? The ability? The strength? The perseverance? The whatever it is, I know that I lack and whatever life throws at me I know I will never have. In that second I wanted to remove my own leg and kick myself up the arse for being so pathetic. I was in awe.

It didn’t stop. We were amongst ‘friends’ where we could share stories and ask questions. A lovely elegant lady told me that she was conscious of her prosthetic eye, however much I stared I struggled to see which one it was and  when someone assumed  that it was her real eye, so asked her how her vision was out of it, we had a little laugh  as she responded “zero. it’s glass,” but I think that was the proof that no one else could tell, she looked amazing. She went on to tell us a story of how she had sat at the traffic lights once and was too vigorous in her eye rubbing. Yes you guessed it, the eye popped out! She was racing to put it in before any terrified passerby’s spotted it. There was no fear or horror from these stories. We were amongst peers, just as yummy mummies may share poo and vomit stories with no qualms, we shared our eye and cancer stories. One lady, far from home,   was working here whilst on a work visa when she was diagnosed, she has been dealing with this while being far from family and friends, again a moment when I wanted to boot myself.

Someone else made me realise I had missed a trick, as whilst in hospital having her eye dressing changed every four hours, she had decorated it with make up and pens in a different style each and every time. She then got so bored she started target practise with a nerf gun. I’m sure her aim was pretty poor so I wouldn’t have liked to have been her nurse. There was a gorgeous older lady, well passed retirement age who discussed research papers she had read about various treatments. I struggled to keep up with her sharp brain. And of course there was someone who may have noticed on my blog that I am fond of bubbles, so introduced me to the joining together of two of my favourite things. Bubbles and chocolate. And what is so wonderful about those two things are,  I can have them during the day without being considered an alcoholic.

So strangers no more.  Thank you, I felt truly privileged.  I feel a small  celebration is in order, so I’m off to pop a champagne truffle in my mouth.

Until next time.

Cheers!

Worrying about whether I have anything to worry about.

 

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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!

Grey eye

So my blogs are getting less frequent and I hope this builds a frisson of excitement/curiosity about the next one, rather than just thoughts of ‘lazy cow, what’s she up to?’ Various reasons stop me writing, I would like to say a thrilling life of parties and glamour but reality is it’s  usually just sorting out stinking p.e kits, taking sickly hamsters to the vet, and cooking meals for a family of five where usually no one agrees on what they want for bloody dinner.

Anyway my last blog was incredibly short and as you have probably  realised from reading my previous blogs, I struggle to express my feelings at the time. I find it easier to explain in hindsight. Not to my family and friends but to everyone else. It’s all just too exhausting when I am feeling pretty shattered anyway. So here is a rather quick explanation of my feelings, post ‘MRI all clear’….pissed off! That’s it. I was furious and tired. How? Why? Well I can only explain it by comparing it to a running race, a long one. ( you see that’s the marathon runner coming out in me! I ran one, once, years ago but I will live off that achievement for years!)  You do all the training for say, a 10k, and it’s hard, the weather’s shit, you’re tired but you finally get there, everyone’s cheering you on, you can see the finish line, hear the happiness from the crowd, but as you step towards the finish line, it disappears and moves another 10k, the crowd is leaving, shouting ‘well done’, and I’m left saying “but the race isnt over? Yes I know I should be happy, but I really wanted to stop now. I wanted to hang my trainers up and come home with you all, cheering and happy and celebrating. I’ve got to keep going. I’m tired and I don’t want to f**king keep going! Can you hear that? I don’t want to race any more!” That was how I felt. The apprehension and sleepless nights that accompany me round scan time are never going to go away. Every six months it will be back and I felt mightily pissed off about it. I know I’m lucky to have the scans, I know I’m lucky it was caught early, I know I’m lucky it hasn’t spread. It’s just sometimes I don’t feel so lucky.

So anyway I have moved on and allowed those feelings to blend back into the background. I am back to normal, happy (well usually a bit moany) Ruth. Again over this time some people have amazed me with their ability to understand where I am coming from or what I am thinking without me saying anything. I met a friend who I haven’t known for very long, and don’t see very often, but she said “I read your blog and thought yes that’s shit you must feel so annoyed at the lack of control.” I hadn’t said anything to her, she had just read ‘I’m off to drink champagne’ but she could see through it, she thought about how she would feel and it made me think, there are really so many kind, thoughtful people out there. People that have the ability to really think about a situation and know what you are feeling when I sometimes don’t know how to express it myself. It’s the lack of control that pisses me off. I want the race to stop, I want to take my trainers off, but I can’t. The lack of control makes me furious! But to put that fury to good use I have entered a half marathon, if this cancer is going to make me keep going I will run and raise money as I go. My just giving page will be up and running soon (pardon the pun!) and f**k the never-ending 10k’s (MRI’S), I will have my other finish line to get to which I will cross and finish and which I can go home from and celebrate with everyone else.

The other eye news is I have a grey patch appear on my eye. see below.

See nothing is ever plain sailing? Anyway I’m not really worried about this, just a little bit. I e-mailed the photos to my consultant hoping for a “Yes, to be expected see you in January.” But instead got a “This is a common occurrence after brachytherapy but would like to see you at my emergency clinic to confirm.” Confirm what? That is is the common occurrence or what? What else could it be? Anyway this is where google becomes your friend. When I googled back at the beginning, when I was first diagnosed, I was terrified, as everything pointed to eye cancer. Now when I google grey eye, no cancer related stories appear – hooray. I’ve been happily googling away, reading about discolouration, strange pigmentation, a man with high cholesterol, but no horror stories. I’m off to see my consultant later in the week, so if in the mean time anyone finds a story that grey eye means your head is about to drop off, please pm me so I can at least be prepared.

And ending on an even lighter note I just thought I would share my children’s helpful thoughts on grey eye matter. My eldest daughter wondered if it would spread? “Will it spread all over the white of your eye? you’ll look sort of demonic!” Thanks!

Middle child helpfully told me that I could get my eyeball tattooed. “People do you know? It’s fine?” As if she bloody knew, and she’s the one that faints at the sight of blood.

Youngest, most troubled child just asked “will you be ok?”

“Yes poppet, mama will be just fine.”

“Good! because there’s a really good film coming out called ‘A monster calls’ (yes you guessed it the monster is the cancer!) and I want you to take me to see it!”

F**king great! I will keep you posted on grey eye and let you know how the hideous film is that I will be forced to watch with my gorgeous, thoughtful girls! Better pop a bottle in the fridge just to see me through. Cheers!

 

It’s not over

 

 

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I’m the red faced one at the back.

I wasn’t going to do another blog. I sort of felt that my eye being in remission was a happy ending so that I could just drift on with my life and not talk about it anymore.  I know that isn’t the case, I still have the dreaded MRI’s to contend with, but the remission gave me a ‘get out of jail free’ card. I could stop the blog, the curiosity of others and just pretend everything was fine now, thank you very much. But then I came back to the reason for starting it up. It was because I wanted to know from other cancer sufferers, specifically eye cancer sufferers, how they were.  What they felt and how they came through it or didn’t. It gave me comfort to know I wasn’t alone, reading someone else’s story. That’s why I started mine, so maybe someone could get some comfort from how I felt or how I’m dealing with it. So I feel I wouldn’t be doing my blog a justice if I didn’t continue with the truth that is living with a cancer diagnosis. I can’t just wave my magic wand and say ‘ta da’ it’s a fairy tale ending, because obviously it’s not.

So here goes. My MRI is on Monday. The results will be given to me next Thursday. The wait in between is hell. My good friends panic and anxiety have kindly come along to accompany me in the build up. They weren’t here last week so I started to feel that I was coping with this. But suddenly out of the blue my body goes into a fight or flight mode, the tension and nerves swarm up my throat, again making me gasp. It annoys me. I may have just been making a cup of tea or thinking about dinner, when this surge of adrenaline, panic, powers through my body, reminding me that something big is looming. The worst part is that I hurt my back about three weeks ago. I don’t know how, it just aches. It’s lower back pain and I’ve convinced myself it’s bone mets. I remember the painful massage on holiday and think was that a sign? Last week I wasn’t worried about it, this week knowing I have a scan coming up it’s playing over and over in my head like a broken record. So the sleepless nights have started again. Lying awake at night wondering if next week I’m going to be told all is well or I’ve moved to stage 4. Big breath.

Anyway in preparation for the fear I knew was coming, I put plans in place to deal with it. For me writing and  exercise helps, like running, walking up big hills etc. I don’t usually like exercise, I force myself to do it, but now I find when I run it’s a sort of meditation  that makes me feel alive. So that’s good because it’s all about feeling alive.  The plan I put in place to beat the fear was joining a fierce military fitness group in my local park, as you do. And bloody hell does it work! Last night I was awake watching a milk float (I didn’t know they were still around) come down our road at about three in the morning wondering whether I should google what spread to the spine feels like. This morning I was heaving logs around bushy park, doing press ups and sit ups badly amongst the deer poo, laughing with a friend as we tried to drag some enormous weights along the grass and generally enjoying myself. I felt like I’d taken a drug, I haven’t laughed so much in ages. I think it was hysteria rather than anything funny happening. But hysteria felt good. I am one of the most unfit people there but the buzz I get is invaluable to me at this trying time. I’ve been doing it for nearly four weeks now and every week the fit military bloke shouts well done to various numbers (we wear numbers on our shirts), today he shouted to me! “GOOD SPRINTING 46!”  I think I blushed, not in a weird I fancy him sort of way (I’m married to my gorgeous husband, who also reads my blog) but because I was embarrassed that it felt good to do well amongst the super fit types around me. Now if I’m really honest he shouted to 46 generally in my direction, I was actually too embarrassed to look down and check my number as I wanted to appear nonchalant like it’s no big deal, and there was another bloke pretty near me also doing a fast sprint, so quick in fact I couldn’t quite catch his number either, but I thought it was for me so that’s the main thing. I wanted to jump up and down on the spot shouting ” whoopee – f**king great sprinting 46!” but that wouldn’t have suited my nonchalant ‘yeah whatever I sprint in my sleep’ stance, so I didn’t.

But there you have it. I didn’t want to blog because I was scared. I didn’t want to tell people that I’m frightened of my results coming next week, but after a brutal pummelling in the park I feel brighter. Able to talk/write about it without it making me breathless. So lots of positive vibes next week. Please let me just have a lame weak back with no sinister growths. Let my liver be as unremarkable as it’s possible to be. And let me just pop a bottle of bubbly in the fridge as, as these military scout types would say, it’s always better to be prepared.

Cheers to a speedy healthy next week. xx

Remission

 

unknownThe main bulk of my blog has always been written in hindsight. I’ve been talking about what has happened in the past.This has been good as it gave me time to sort out how I felt,  time to reflect and make sense of it all before I started blogging. People have said I am brave to write the blog but I’m not really, as it isn’t so frightening talking about how scared ‘you were.’ Much more courageous are those that admit  how scared they are.  So I felt a little more apprehensive when everyone was up to date with my story. I still don’t blog just before an appointment as I really don’t know what to say other than I’m scared. Go quiet and just talk about it after the event is my strategy.

So there I sat on Sunday knowing I had my eye check up in the morning. Now for me this was no biggie. That is the liver scan, but the eye appointment does still have an impact. I wasn’t worried as I now know the signs that something is wrong. I had had none of these. No flickering or flashing lights. Eye sight had settled. I could actually say I had sort off forgotten about my eye. But with my appointment there in my diary I felt really pissed off. I resented the bloody reminder that something was wrong. I was tempted to cancel it but knew I just needed to do it. On the train journey up I realised I couldn’t remember the size of my tumour. I needed to know so I could tell straight away whether it had changed. I couldn’t believe that I couldn’t remember. How could I forget something like that? I realised it’s because my life really has moved on. This whole story is becoming something of my past where I can’t quite recall the finer details. Anyway, what did it matter?  The f**ker would still be the same size, so I would be reminded soon of the measurements.

First came my eye test. An improvement! Yes, I could read the whole line below my previous recording. How was that possible? Not sure. Luck? Next came the drops, the examination, the measurements, the pressure check, the ultrasound and unbelievably my tumour has started to shrink! It was 1.2 by 8mms. It is now 1.0 by 7.5 mms!! I have wanted that f**ker to shrivel up and die since I had radiotherapy and now finally, 16 months post surgery it is shrinking. The fluid? Gone! My eye consultant looked ecstatic. “Marvellous news” She kept repeating. “Fantastic we treated it so early. Yes there is loss of sight but your tumour is inactive. I would explain it as remission. Your tumour is in remission.”

I looked up the meaning of remission when I got home, just to double check that what I was thinking it meant, was actually the case;

Complete remission means that tests, physical exams, and scans show that all signs of your cancer are gone. Some doctors also refer to complete remission as “no evidence of disease (NED).” That doesn’t mean you are cured.

Was I ecstatic? No. Confused? Yes. But I still have to have my liver scans I kept thinking. How does this make anything better? The liver scans are what frightens me. My husband and myself hugged goodbye “Good news!” Yes good news we agreed. Was I a little scared to feel happy? I suddenly felt slightly vulnerable stumbling along, as if someone was going to call me back, “Wait Ruth! We were wrong you do still have it!” Those that know me well, know that I really don’t need any excuse to celebrate and pop open a bottle of bubbles, but this didn’t feel like I should be doing a celebratory dance and I was unsure why. The train journey home I sent texts to my sister and mother-in-law who were waiting to hear;

‘All good. She actually said “your tumour is in remission!”‘

I wondered if I would receive a confused text back. Remission? Really? What does that mean? A mirror to my own jumbled thoughts. But what I received were all the whoops and congratulations that just show how relieved and happy people are for this piece of good news. I felt apprehensive. Was this all a bit premature? I picked the kids up from school and sorted all the usual stuff out while it was milling around in the back of my mind. Remission? And then I received a photo from my mother-in-law. It was of her  and her husband holding a glass of bubbly in their hands toasting me. They looked so happy. Relieved. Emotional. And I cried, Then. That was when it sunk in. I don’t have eye cancer anymore. I had eye cancer. And this enormous gulf of emotion suddenly threatened to come pouring out. Tears for what I have come through. Tears for those that are still going through it and tears for those who are just starting it.  It is f**king shit. No other words to say about it. Cancer is just that. Shit. But this was good news. A hurdle I had overcome. I decided then to share it with my friends. I had to celebrated this and not think that my liver scans are still there looming over me. I will have constant surveillance and will be scared, but today, things are good. I quickly scribbled a Facebook status about being in remission before  racing off to a school meeting. Yes all the normal stuff like life just continues you know? And the wine needed cooling! Did you really think I was going to pass up a chance to have a glass of champagne?!

My name is Ruth. I’m 43 years old. In 2015 I was diagnosed with eye cancer. Today, in September 2016 I am cancer free! Whoopee!!!

Hmm…I don’t know.

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Sometimes (most of the time) I sit at the keyboard unsure of where my blog is going. I feel I have only one sentence to write so it’s not really worth a blog, but then my verbal diarrhoea kicks in and I realise I’ve written quite a bit. Today though I think its going to be a short one because I know I have no answers to what’s on my mind.

A few weeks ago I was talking to a friend who had recently been given the ‘all clear!’ Happy days. He will remain being checked for 10 years but it has gone and is very unlikely to return. Fantastic! He asked if I was the same? All clear with regular checks? My answer is always a little tricky. Do I lie and continue along the jovial lines, smiling, laughing and high fiving each other? Or do I pop everyone else’s balloon around me? Will I then become the miserable bitch that no-one wants to see, because my life and my truth is too painful and hard for others to deal with? It casts a cloud on your sunny day. It’s difficult isn’t it? I spend most of the time happy and smiling in the belief that the f**ker won’t return, but if you ask me a question, should I tell the truth that  50% of ocular melanoma patients develop liver mets?  It is then terminal. Or should I lie and protect my interrogator? Rightly or wrongly I don’t protect my family and friends, they get the truth, warts and all. This is  because I need to feel I’m not alone with my fears and concerns. A problem shared is a problem halved and all that. So my reasons are entirely selfish, I’m looking for help. Those kind enough to ask but who are not in the ‘inner circle’ are treated to a “yeah fine” when enquiring after my eye. I know they secretly breath a sigh of relief and that’s fine too. My husband says I shouldn’t worry about these things, but I do. I don’t want people to avoid me or feel uncomfortable around me, just like I don’t want to avoid people and feel uncomfortable around them. So everyone is after the same thing, it can just be a little awkward getting there. My blog allows me to answer a lot of difficult questions people have and helps me to avoid uncomfortable conversations. But to me humour is the main thing that breaks down the barriers. At a recent family event my brother-in-law turned to me saying “yeah yeah, don’t come with your eye cancer story, you’ll get no sympathy from me. Ooh I’m deaf in one ear and going blind in one eye. Doesn’t wash. Go and get a round in.” And I loved him for it.

But I’ve digressed. My reason for this blog, my question that I have no answer to, is what most of my friends ask when they are told the truth. What my ‘all clear’ friend asked when I didn’t join in the happy dance. The question I get time and time again is “God. How do you deal with that?”

Answers on a postcard please xxx

Summer catch up

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I’m aware it has been over a month since I last blogged. So put your feet up, it’s a long one. I’ve basically been enjoying myself on holiday and loving the summer with the kids. My eye and cancer have still been there but they haven’t managed to disrupt my fun which has been a huge relief. But now as September approaches, thoughts turn to back to school, waking up early, homework and my hideous check ups. So I thought I would do a summer catch up before my least favourite time of year comes round. Scans!

Over the summer holidays my eye popped its head up and gave me a few tiny waves, just in case I had forgotten about it and was having too much fun. But they were tiny waves, they didn’t cause too much of a ripple. The first happened on our second day whilst visiting Universal and Harry Potter land. I have always loved the rides and roller coasters but now I discovered that the wind blowing in my face causes pain. Pain in the bone, a little like sinusitis if anyone has ever experienced that? And it made me cross and irritable. How was I going to manage six days of theme parks with pain in my eye? How was I going to have fun with the kids who wanted to drag me on everything when I now felt like screaming from frustration rather than the thrill of the rides? My husband dragged me straight to the first aid unit at Universal to ask for paracetamol. When we had cleared up that it is called ‘Tylenol’ in the States, the cheery lady enquired as to whether I had a headache. I should have smiled and nodded but I wanted to thump her and scream “I wish!” My throbbing bone ache over my eye had made me really cross and she got the brunt. “No I don’t have a headache, I have eye cancer and the surgery I had last year has caused my eye to hurt on the rides!” There was a silence. Now I felt bad for her. I couldn’t take it back. She looked sorry for me. My husband thought she was going to cry. I felt guilty and suddenly wanted to comfort her, but instead with my hand pressed firmly to my eye applying pressure to ease the pain, I swallowed the ‘tylenol’ and left her to the next, hopefully far jollier customer. “I shouldn’t have said that to her” I was now moaning to an incredibly patient husband, who knew not to tell me that he agreed I was too abrupt, instead he joked that she would probably never recover and would spend the day in tears. My guilt eased along with the pain. The paracetamol did the trick and we returned to all the vomit inducing rides. Bizarrely I didn’t have to take analgesia for the rest of the holiday. I realised if I placed either my glasses on or a hand over my eye to stop the wind, I prevented the pain which we realised was from ‘dry eye’ a common condition after radiotherapy that causes the bone socket to ache. I’m lucky that I don’t suffer from it on a normal basis, as I know of many people that take drops regularly to ease this type of pain. Experiencing it for just that short amount of time made me realise how horrible it is. My eldest daughter suggested wearing swimming goggles on the ride if the pain continued, and I knew it must be bad when I actually considered it and wandered if they sold them anywhere in the park?

The second wave caused a slightly larger ripple. We were on the relaxing part of the holiday now, recovering from ‘Orlando’ and I had booked a massage. Something that I hadn’t managed to have on my last holiday due to my anxious state of mind. I can do this and relax I told myself. I can almost fall asleep. I can not think of cancer. And I did, until she got half way down my back and pressed to the right of my spine in a small localised spot that caused me to wince. “You gotta pain there honey?” Well I didn’t realise I did until she pressed it. She moved on and my mind started racing. Was that near my liver? Is something wrong? Have I developed mets? The people that I chat to on the forum haven’t mentioned small localised back pain. Have they? Anyone else who has never experienced the cancer scare wouldn’t  think anything more of it. Maybe they slept funny or twinged it somehow jumping in the pool. But I was now thinking how to get on google and look for physical symptoms of liver mets. The wifi was terrible where we were so I was just trying to rationalise it in my head. My last scan was four months ago, if something had developed it would be small, not large enough to cause symptoms. And are these even symptoms?  Put it out of your mind I told myself. Don’t tell anyone. That just makes it real. My head needs to go back in the sand until I get home. If I’m still worried I will just contact my jolly oncologist. And breathe.

Of course your mind doesn’t always do what you want it to do, in fact it never does what its bloody told. I was quiet, deep in thought without realising, not laughing as much. One evening the kids had gone to their room to get ready for dinner  and my husband and myself were sitting watching the sun over the lake. He asked if my eye was o.k. “It’s fine” I smiled. He had noticed. He was looking at me, he wouldn’t ask again, he wouldn’t force me to say anything. The lake was still, like glass, the sun was still hot, people had all wondered off to get ready, to eat, there were just a few stragglers enjoying the last bit of the day like us. I inhaled slowly as I thought I need to tell him, but will it ruin the holiday? Will my anxious thoughts now ruin his fun too? But I could see he was already worried. He knew something was wrong.  So I told him. “When I had my massage, it hurt in a small localised bit. I’m scared it means something.” I thought he would come up with some wise words to reassure me but my ever practical husband was suddenly shoving his knuckles in my back. “Where? Here? Here?” None of it hurt. “I think it was because I was lying flat and can you stop prodding me!” I was pushing his hands away. ” Your not a bloody doctor!” But I did stand up and feel my back, I couldn’t feel anything. I might have just slept funny? “Rufus you’re going to be fine” I could hear him say. You have that moment where you just can’t look at each other. You both have tears in your eyes. Instead we just looked out to the lake. The beautiful still lake. “Do you think there are alligators in there?” I looked at him. “Yes lets worry about that instead!”

We went to dinner, we laughed, we played ‘cheat’ and ‘black jack’ with the kids. A couple of days later I booked another massage. I needed to know. As she worked her way down my back I was holding my breathe. Would it hurt? Am I making a huge mistake as I will not be able to relax if it still hurts?  She pushed and squeezed and ….nothing. “No pain honey? You must have just slept funny” And she continued to massage and ease away my anxiety. So that was it. Two small ripples which were nothing in hindsight. And talking of sight that has got a little worse again. I’m probably blind form 11 – 3 in my left eye. But do I care? Not really. As always there are bigger things to worry about.  One of which  may be that soon I may need someone else to pour the bubbles for me. I don’t want to risk wasting any by missing the glass! Happy holidays everyone! xxx