ct scan

Just an eye

~ justaneye73 ~ 2 Comments

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

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

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

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

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

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

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

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

Until next time take care.

Cheers

Ruth xxxx

Jacqui’s Story

~ justaneye73 ~ 3 Comments

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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.

 

 

Gory eye

~ justaneye73 ~ Leave a comment

My eye a few days post op. It was worse for everyone else. I didn’t have to look at it unless I looked in a mirror. So I didn’t

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Hilariously I’m a nurse and my husband is the most squeamish man you could meet, but with me being unable to look and just wanting to cry he took over drops duty. He took over the running of the house, the school runs, the homework, dinner. Phoning and making my cardiologist appointment, arranging my full body CT and my post surgical follow-up. Plus keeping his job going and the money coming in to pay the bills. He has no medical training at all but learnt very quickly how to counteract any concerns and worries I fired at him constantly.  We survived by being practical. And by not spending a single moment alone together. We couldn’t give each other any space for our fears to come tumbling out. We needed to fill the day with the ‘normal’ stuff. And the kids kept things normal as only children can. They didn’t know what emotional turmoil I was in so had no sympathy for me being tired or needing time out. They bullied me into a normal existence and that was how we survived. I remember someone saying that my husband and I should go out for a meal together. Just the two of us so we could talk. They didn’t understand that this is what we didn’t want to do. Talk. It was too painful. I couldn’t sit opposite him in a restaurant and look at the fear in his face and think about what I could potentially lose. So we didn’t.

Cardiology was next on our list of practical jobs to do. The cardiologist was a wonderful man who alleviated my fears straight away. He listened to my marathon feat and gave it the huge significance it deserved. He even asked my time! Four and a half hours if you’re interested. Very difficult to do with a heart condition,  I would have experienced symptoms, palpitations that lasted a few minutes. Yes I have an abnormal heart beat and yes everyone that listens to my heart over the years always asks if I have a murmur, but it’s just me. A little anomaly that about 1:400 have and as long as there are no symptoms it is of no concern. Hurrah! First bit of good news in a long while. “Plus” he said, “you have bigger fish to fry.” Yes let’s not forget the cancer. I was to have an ECHO (ultrasound of the heart) and was taped up to a 24 hour ECG. If the results were all normal I wouldn’t have to see him again. And I’m pleased to say I never have.

Then came the full body CT. I would quite happily trade  my MRI’s that I must have every six months for the CT. It is a calm and serene experience. There is no noisy banging going on. I actually could have fallen asleep if my stupid brain wasn’t in overdrive worrying about what it could see. My thigh had been aching for about ten days. These was bone mets I had convinced myself. Welcome to the world of life post diagnosis, where every headache is a brain tumour, every cough is lung cancer, every sore throat is…you get the picture. However reasonable you try to be it slowly creeps into your subconscious. Just lurking there. Waiting for you to close your eyes and drift off into a peaceful slumber so that the fear and shock is worse when it grabs you and shakes you awake at night. There is no one else awake at night so you can’t whisper “I think it’s spread, I think I’m dying” And would you want to say that to your loved one anyway? As he is also thinking “I’m scared it’s spread. I’m scared you’re dying.” So you lie awake, frightened, waiting for morning to come and relieve you with slightly more reasonable thoughts.

I was waiting for my CT results. I had a few more days to go. The days are endless when you are waiting. I wanted to fast forward time but would then start to think if I don’t have much time I want it to travel at the pace of a snail. An e-mail arrived from my jolly oncologist, the liver mets guy, ‘just to inform you the pet scan results are normal. see you in six months.’ I stood in my kitchen and cried. Suddenly these little bits of good news seemed to be coming my way. Luck appeared to be on my side. Maybe through all of this I would be O.K. It was these little bits of hope that slowly repaired the damage and trauma I had been through. I just needed them to keep coming.