Ocumeluk

 

Photo on 02-08-2017 at 14.47

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

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

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

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

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

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

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

Thank you lovely people. Share! Share! Share!

Ruth xx

 

 

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 need Valium

My youngest daughter had called me in tears. She wanted me home. She couldn’t understand what was taking so long and why she couldn’t visit. I made the mistake of telling her I would be home the following day after surgery. I was now under pressure to make sure  that this would definitely happen.

I had a visit from my eye surgeon to check things were going to plan. I happened to mention that eye surgery sounded disgusting, so I didn’t need an explanation of what she had done or what she was going to do. She replied that she thought midwifery was disgusting?! Now I obviously wasn’t going to get into a game of top trumps with her, but we all know the popular programmes on the telly happen to be ‘one born every minute’ or ‘call the midwife’ or ‘too posh to push’ etc. Nowhere in the telly listings do I see a ‘not to be missed’ eye surgery documentary, or a ‘day in the life of an ocular oncologist.’  I obviously didn’t say this to her, I didn’t need to make her feel bad and actually I was incredibly grateful that she didn’t find fiddling around with the blob of jelly in my head as repulsive as I did.

Surgery was to be on Thursday evening, so I would be home late, but home I would be. My bags were packed. Surgery was to only take about 20 minutes so my husband was told to get the cab on speed dial.

This is where things turned a little strange. While I was under the anaesthetic I felt as if I could feel a tugging on my eye. I picked up my arm to push whatever was there away and then went straight back to sleep. I felt no pain, or panic, just a tugging feeling. While in the recovery room I said to the nurses that I thought I’d  woken up. I was reassured that that was highly unlikely. I returned to my room and retold the story to my husband. “I think I woke up?” We agreed it must have been my imagination. The cab was called, I was dressed and ready to go. My eye was covered with a patch and I had numerous drops that I was to put in my eye over the next couple of weeks. Before I left the anaesthetist popped in to check I was O.K.  I explained that I was fine but I thought I had woken up. She confirmed that  I had woken during the surgery, but this had been controlled and planned. She explained that on my arrival in the hospital on the Monday the ECG had shown abnormalities. They had to make a decision on what to treat first, the heart or the tumour. They decided on the tumour and felt it best for me not to know about this until my radiotherapy had finished. They gave me a light anaesthetic as they were concerned. They also gave me a light muscle relaxant so that if I started to wake I would move and let them know. She gave me the name of the heart condition she thought I had and told me to make an appointment with a cardiologist. She also told me not to google it. “Don’t frighten yourself Ruth. Go home and rest?!!!!”

Am I wrong in thinking everyone would be frightened?  Two weeks previously I had been told I had cancer and now I was being told plus a juicy topping of heart defects. I was stunned, vulnerable, shocked and annoyed. I felt fine. My eye had felt fine until I was told about the tumour and my heart had felt fine up until that point. Have I not told anyone I RAN THE BLOODY MARATHON! Of course now to add to my fear of not being around to see my children grow up due to cancer,  I was starting to think I going to keel over and die if I took the stairs too fast due to a heart complaint. I needed to get home and google it, but in the mean time my sister called to check I was fine and on my way home. She didn’t expect my raw response as I told her what had happened. I could hear her tell her husband “Ruth woke up during surgery, they think she has a heart problem!”  We couldn’t speak anymore. We were all too shocked and utterly exhausted. There was nothing left to say. It was what it was. I had hit forty and my stupid body was crumbling at the seams. There was nothing any of us could say. We travelled home in shocked silence form Moorfields hospital to Hampton. I was numb and devoid of emotion. My husband was given the job of keeping everyone away. Fielding calls, putting off visitors. I had no energy, I just felt traumatised and when you feel like that you can’t verbalise what has happened. It makes you relive it. So I didn’t. I stayed in a cocoon at home, only emerging for all the hideous hospital appointments.

And I still hadn’t looked at my eye. I was going to need Valium.

I’m radioactive

The week was passed with visits from lovely family and friends. Drops being put in my eye four times a day from the lovely nurses at Moorfields. I was scared every time the patch came off, I didn’t want to look and would ask the nurses if it looked disgusting? “No it looks good” they would reply as only medical staff can. I’m sure if I asked any of my friends to have a look I would have had a more honest response. I actually looked forward to the dressing changes and drops, it felt soothing.

So I would wonder around my room with a little machine that I was told to use to check I was still radioactive and the disc hadn’t fallen out. Fallen out? A piece of metal sewn to my eye the size of a two pence piece could fall out without me knowing? I think not.

I had noticed that when the patch came off I could see normally. I hadn’t noticed any double vision. This was a good thing. So naturally I also started to think I wouldn’t go blind in that eye either. I would soon learn that that was far too optimistic.

During a visit from a good friend we started discussing how to tell other people. Mutual friends were starting to question why I wasn’t around, not returning calls etc and she was finding it difficult to fend off questions and lie for me.  I hadn’t realised the pressure I had put on others to ‘keep it quiet.’ My main reason for this had been because I didn’t want the children to find out, but now they knew I was in hospital, although not the real reason, I felt I should tell people. I had managed to speak to the majority of family and close friends and I decided to let everyone else know by Facebook. I couldn’t call everyone. My Facebook setting is private. I don’t have hundreds of friends. Everyone on my list is someone I like and care for, so it seemed the easiest option. I hastily sent two messages to two very dear friends I hadn’t spoken to and then posted my horrible news.

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It was done. I felt relieved. I received lovely messages from people, this meant so much to me and made me smile. Thank you to you all.

I then had a perfectly timed visit from the anaesthetist to let me know that following removal of the radioactive plaque on Thursday evening, I could go home. It might be quiet late and I might prefer to stay another night. She hadn’t even finished speaking as I was chucking all my belongings in my bag. There was no stopping me now. I wanted to go home and see my children.

 

Welcome to Moorfields

This was my first visit to Moorfields eye hospital, and it was going to be a long one.  We arrived at Old Street station and followed the green line that is painted on the floor from the station to the hospital entrance. It is raised so that those with limited sight can feel it with their stick. Very clever.

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I was admitted to my home for the week. Bloods were taken, and an ECG was done to check I had no heart abnormalities before surgery . I then went downstairs for a chest x-ray and more photos of my eye. Whilst having my chest x-ray, the young Australian guy doing the x-ray informed me that “everyone in Australia has a melanoma.” Everyone?!  I think he was just trying to reassure me that it isn’t that abnormal and that the Australians aren’t all dead. Which of course was very kind, but he was a little confused between skin melanomas and those of the eye. Same name, very different. Skin cancer is more risky in sunny climates but eye cancer isn’t. The sun isn’t a risk factor. But people try to help with whatever comes to mind, such as “thank goodness it’s the same side as your deaf ear. You ignore everyone on that side anyway.” As a dear friend reassured me. Yes.Thank goodness.

I then a had a visit from my eye surgeon so she could put a large felt tip pen on  my head.

 

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This was my opportunity to just check a few things that had been bothering me. She had told me that I had a risk of going blind in my bad eye within two years post treatment. I wanted to know if this was just a risk explained to everyone or was I more at risk. “You are more at risk.” I was told. I could also suffer from double vision post surgery. This is usually alleviated by an eye patch. Eye patch?! Bloody hell I only need to breathe next to my kids before they start telling me I’m so embarrassing, imagine having to rock up at school with an eye patch? A good friend offered to have a look in Claire’s accessories  for some slightly kinder looking ones, but I thought I’d end up looking like a pirate on a hen do. Thank God it was the summer, I would just hide behind my sunglasses.

It’s terrible to feel worried about your appearance when there are obviously more pressing matters, but you do. And it’s all relative. I remember when I was first told about the tumour I thought, just remove my eye. I didn’t care, I wanted to live and see my children grow up. I could maybe put it in my husbands beer glass to scare him like ‘Mrs Twit.’ But when I was told that wasn’t necessary, I suddenly desperately wanted to keep it and felt bad that I was so willing to trade it in without a fight. So now here I was thinking about how ‘normal’ I would look post surgery, as I didn’t want to look ill. I didn’t want to stand out. I didn’t want that awkwardness when people ask what’s wrong with your eye? “Oh just cancer. Anyway, how are you?” And I didn’t want a  big marker pointing at me shouting “this is it! Here is the cancer!”

I had read all about the surgery. I had asked an enormous amount of questions to all the lovely people who had been through it before. I knew what to expect. So when I came back from surgery holding onto my sore eye, wretching violently into a kidney dish, I was a little surprised. No one had mentioned nausea. People had explained it as ‘a little uncomfortable.’ A little uncomfortable? This little discomfort and nausea plagued me for the week. I stopped eating (down another dress size) and had regular painkillers and anti-sickness tablets all week. The nausea was the worst. But if it was making me feel that bad imagine how it was making my tumour feel. It would be burning it to smithereens and it would all be worth it.