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.

 

 

I Choose Life

 

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Rosie keeping an eye on what I’m writing!

On a  cinema trip with the kids recently, a trailer came on for Trainspotting 2. I sat there feeling quite nostalgic, as the film and actors seem to have grown up with me. I was in my early twenties when the first film came out, I was a struggling single mum, trying to make ends meet and had probably made various poor choices in my life. Obviously nothing as bad as the trainspotting crew! And now here I was, twenty years later,  watching the trailer, thinking how the characters have all grown up and become sensible, like me. I am now happily married with three kids and a mortgage living a sensible, forty plus year olds life. Ewen Mcgregor’s voice than echoed around the theatre “I choose life.” he said, and I wanted to stand up and shout “That’s like me too Ewen. I choose life.” The only difference being will life choose me?

That’s one of the things that I find difficult to cope with, when I ask myself, will I still be around in a few years? When the kids laugh and make comments about what they will all be like when they’re older, what jobs they’ll have, how many children etc. I smile and laugh too, but have that fleeting dark cloud that crosses my thoughts that says “Please let me be there. Please let me at their weddings and meet my grandchildren. Please let me see what beautiful strong women they will grow up to be because I desperately want life too.” So as I’ve said before, I do everything in my power not to think about it. I keep busy with things and people that make me smile and laugh. I don’t want to spend time worrying about it. I want to spend my time having fun. It doesn’t always pan out how you want it to though.

Recently I had a little sabbatical from social media, but ended up missing family and friends and mainly my eye cancer support group, so was back on within a month. One month. Within that month someone very to dear to lots of people in the eye cancer UK community had died and various others have had bad results back form the dreaded liver MRI. One person I consider a kind friend was one of them. I had thought I’d be catching up with happy memories and stories but was instead brought to a brutal halt that cancer is still very much part of my life. It had got him, would it get me? I wanted to scream. Why? He chooses life too and nobody seems to be listening! Not only is it bad enough to have to play Russian Roulette every six months, waiting for it to spread, but many people than have to fund the treatment themselves. Why? Because the cancer is rare, it’s terminal, so where would you put the funding? To prolong a middle aged woman’s life for a year or to pay for a lung transplant for a young child. It’s brutal, but that’s it. We know we aren’t top of the funding list however loud we scream “I choose life!!” So if anyone is ever looking for a charity to support, Ocumeluk is one that supports eye cancer and us.

And just a little aside to prove my point that ignorance is bliss, my lovely, almost 15 year old cat Rosie isn’t very well. She arrived when my 21 year old daughter was seven. She saw the arrival of the next two girls, who were often heavy handed with her, as only toddlers can be. Many a time I had to tell them to not carry her down the stairs in a head lock as poor Rosie couldn’t breathe and not to body slam her.  She never scratched or bit them. She then saw the arrival of a very large bouncy labradoodle, who she made quite clear too, she was boss, and managed three house moves without ever getting lost. We have now been told she’s on limited time and it’s just palliative care. We are all sad and devastated. Well all, apart from Rosie. She doesn’t know! She is ignorant to it and is more than happy living off fresh fish and chicken and being given fresh catnip daily and as many laps to sit on as she wants. Middle child told me that “it’s lovely as she can live the rest of her life like a princess.” And she can. An ignorant princess, which is the way to go. So I’m off to pop a bottle in the fridge so we can be ignorant princesses together.

Cheers xx

Cloud cuckoo land

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People who used to work with me will know, as I often said, I’m terrible at reflecting on my thoughts and feelings,  as I guess most people are. Who has the time to sit down and think through why you might be feeling upset or hurt?  I just ‘get over it,’ which of course may never sort a problem out. That is why I’ve been amazed at how reflective I have been over the past month. Really thinking about what makes me happy and what I want to do or change in my life, other than just coming off social media. This is where the book came in. Writing makes me happy and keeps me occupied. But don’t get me wrong, I am under no illusion it will ever be published or read by those other than who I pay, or who take pity on me, but it keeps me focused on positive things. It creates dreams, where I see my book published and in Waterstones and people telling me how wonderful it is. Dreams where I have an agent who negotiates a six-figure deal to have my book published and sold to a film company and it is then made into a box office hit. Dreams where I’m played by someone who most resembles me, probably Jennifer Anniston? Catherine zeta Jones? Cindy Crawford? Or an amalgamation of the three. Dreams where my leading man is…Sorry was I getting carried away?  It gives me a warm feeling that others may get from participating in a sporting event, the cyclist who dreams of being in the Tour de France (I wonder who?), playing golf with friends but dreaming of winning the open, selling one of your paintings, coming first in a baking competition (the dream of my youngest), finishing a marathon (tick. I’ve done that. Have I ever mentioned it?)  or spotting a rare bird on your many walks with your trusty binoculars. And that is what is important, having those dreams. Living your life but living your dreams too.  Life is too short to live with regrets of what you would have liked to have done or achieved. I want to give it my best shot now because you never know how long you have left. And just in case you’re worried, I’m not turning into a know it all guru on life because of my cancer experience, I have just realised that this hideous cancer experience has  helped me find my dream.  Where acupuncture and counselling failed, living in cloud cuckoo land has succeeded. Through doing this blog I have found something I enjoy doing as much as my husband loves lycra. If that’s even possible.

My other change is I am no longer answering messages about my appointments and check-ups. I felt I needed to take back some control over who I talk to about it. This may seem very odd when you are reading all about it on my blog, but that is written when I am ready. People worry and care and that causes them to pick up the phone to tell someone else what I may have just shared with them, which eventually comes back to me with phone calls and interrogations that I wasn’t ready to share openly and discuss. My blog is less personal and allows me more control. People then send lovely messages and e-mails rather than firing questions at me. All much more relaxing. And I love receiving them.

And now my update on yesterday’s eye appointment. It was all good. It fact my eye consultant described the tumour as ‘beautiful.’ Not sure that is an adjective I would use to describe it, but I understood her meaning. It was reacting beautifully to the radiotherapy. It is now very pale. No fluid near it. Sort of the same size, which I have come to expect from my tumour. I think of it as a steady sort of chap. One who doesn’t really like change or doing anything excitable. I can cope with that. I don’t want a crazy maverick living in my eye, causing all sorts of problems with his unpredictable conduct. So the same size is acceptable behaviour and I am on a four month reprieve -hooray!

Lastly – we have a teenager in the house again. Middle child has turned 13! Luckily there was no “God I hate you!” moments this morning, but I am well prepared for them when they come. The wine cupboard is fully stocked.

Have a good few months everyone.  I’m off to follow my dreams (or live in cloud cuckoo land, but both places are good places to be) as you never know you may be looking at the next JK Rowling who  looks a lot like Cindy Crawford  (No laughing please!). But don’t worry I’ll keep my feet firmly on the ground.

Cheers!

I’m not ‘brown bread’

 

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Just to reassure people I’m still here. Alive and kicking, maybe just a bit fatter after gorging on lots of delicious  food over the holidays.

Over the Christmas break while approaching the New Year I started to reflect a bit on my life, to think about what I wanted  to change.  How I wanted my year to pan out and what I wanted to achieve. I’m quite impulsive, I make a decision and don’t give an awful lot of thought to it, I just do it. Which is what happened when I thought, I don’t like Facebook anymore and  that is something I want to change for 2017.  I don’t want to ‘like’ my hundredth Christmas tree. Saying amen to a child with cancer on my timeline will not cure them and I don’t want to pass something on because then money will come my way. It won’t and you’re stupid to believe it will. So as I was turning into an intolerant, grumpy women I decided to say Goodbye to Facebook. But that was the problem, I should have said “Goodbye” instead I just turned it off, deleted the app  and continued on with my eating and drinking too much. Well it was Christmas – any excuse!

So I have had numerous texts and e-mails from friends asking if I was O.K? Had I ‘defriended’ them? No, I have sort of just defriended myself. Was I unwell? Not as far as I’m aware. And then there are the friends who you just contact via Facebook, who you have no other contact details for, not because you aren’t good friends but just because it’s easier to message through it. A few managed to contact me via this blog which was very resourceful.  I had planned  to not update my blog until next week, after my eye appointment. But sitting enjoying a glass of wine with my husband last night I was mentioning that a few people had contacted me and been worried, I felt bad as I should have said I was going and not just disappeared. He said that people would think I was ‘brown bread.’ What? I was confused. “You know, dead!” He obviously found it mildly amusing. As we were chatting about whether to go back onto Facebook to just say “goodbye” or not an e-mail  came through from a friend who I have known for almost 13 years, as our daughters share the same birthdays. I haven’t seen her for nearly 10  as she moved quite far away.  She was concerned that I had become unwell. It made me think that because people know me and I have had cancer, they are tainted with it too. Whereas I always used to think it was just me that worried every ache and pain was new growth, I now realise that others worry about that too. And I’m sorry for that. I really am. Just like I don’t like it when my youngest daughter writes stories about illness and losing someone, I don’t like it that people worry about me. I wish you had all just thought “where’s she gone? Unsociable b*tch!” I’m sorry you had to think of this ghastly disease that seems to permeate every interaction of my life. I want to reassure you all I am well. I have started jogging slowly after a hamstring injury and am all wrapped up in my two youngest daughters’ January birthdays. More cakes and bubbles? I hear you cry. Well if you insist.

My other big sharing news and a much larger New Years Resolution than leaving Facebook is something I only shared with a few people last year as I felt slightly embarrassed and not good enough. But I am sharing it now as I am determined to do it and finish it. My book! My blogs decreased as my book writing increased. I am 20.000 words into a teen fiction. My dramatic (dyslexic) middle daughter is my proof reader and she is “loving it!” Now if praise like that doesn’t make you go and pop a bottle in the fridge and celebrate, I don’t know what will!

Happy and healthy 2017 everybody!

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