ocumeluk

I Choose Life

~ justaneye73 ~ 3 Comments

 

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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

Worrying about whether I have anything to worry about.

~ justaneye73 ~ Leave a comment

 

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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!

A Bit off colour

~ justaneye73 ~ 1 Comment

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Feeling a little deflated and orange as I write this. I had a fluorescein angiography today, where they inject a dye into your vein so that they can see the blood supply in your eye. The dye gives you a ‘celebrity tan,’ I was told, which could of course be any colour from and old leather bag to a sickly jaundice. Your urine also turns yellow. Not just a normal yellow colour but fluorescent yellow. In fact if I put it in a straw I could happily wave it around a dance floor and it would glow in the dark and fit right in with the kids day glow sticks. I might give it to them as a cheap version of a glowing necklace later and see if they notice? “Don’t be alarmed.” I was told. There is also some adrenaline at hand as  1 in 1000 will have an anaphylactic shock and need adrenaline. Bloody hell, can I just go home now?

If my blood supply was good and sight loss was due to the fluid, than Avastin injections could prevent further deterioration of my sight. Unfortunately my sight loss is due to ischaemia rather than fluid so Avastin injections won’t work. Obviously the plus side is I don’t have to go through having injections into my eye and making the repetitive monthly journey to get them. The down side is that there is nothing that can be done to restore the sight or prevent further deterioration. This is all said by the consultant  with good humour and smiles so that you think it’s the best news you’ve heard all week, but my mind was ticking away as I was grinning like a nodding dog. I have realised quite quickly that any questions need to be asked there and then, as once you walk out of that office you need to wait for your next appointment and it’s incredibly annoying if you want further clarification. So I asked the questions that were on my mind and the responses were that it was ischaemia, which is death of the blood supply to a patch, mine was confirmed at between 12 and 1 o’clock. It was quite early to get it. It usually appears from 3 years. Just because it is early it doesn’t mean that it will progress faster, but it will progress. I’m looking at about another 2 years of sight in that eye. Pile of sh*t hey?!

As I wrote that last sentence I laughed as I remembered a member on my eye cancer group who had had an eye removed due to a large tumour. He had been given a choice as to whether to treat the tumour or go straight for removal. His response was “well if you had a bag of sh*t you wouldn’t chuck the sh*t and keep the bag would you?” Fair point well made young man.

So as I have also come to expect, she would like to see me again in a month. This is where I silently scream. I spoke to my husband on the train on the way home as I had gone to this appointment on my own. He said he felt sad for me. I feel a little sad too. It will pass, in a day or two I will think how silly to feel down about it as it really doesn’t matter, but over the past year I have learned that it is important to acknowledge these feelings. It doesn’t take me long to bounce back. I have a very important 70th party to attend this weekend so with the prospect of seeing lovely family and having lots of glasses of champagne I can’t stay glum for long. Anyway in my opinion two eyes are totally overrated. It’s all about mono vision now don’t you know?!

Woohoo! You’re up to date.

~ justaneye73 ~ 2 Comments

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About three weeks before my April eye and liver appointment I started to lose my sight. Even though I had been told this was going to happen it still shook me. It was a big reminder that things are still happening in my eye. The radiotherapy still has an effect on me a year down the line. I hadn’t escaped unscathed. The battle wounds remain.

I had been sitting with my husband and children, we had had dinner and were just sitting and talking and probably laughing at each other, when I felt that things were  slightly fuzzy. When I closed my bad eye, everything came back into sharp focus. When I closed my good eye, things were quite blurry. “You’re tired.” I was told by family desperate to offer reassurances that this wasn’t due to the cancer. It wasn’t going to come into our evening and remind everyone on the fragility of life, not now. We were having fun. I agreed it was probably tiredness. I knew it wasn’t. In the morning I realised I could no longer read with that eye. Later that evening I spotted a spider on the wall. When I closed my good eye the spider disappeared, like a magic trick. I kept opening and closing my eye so that I could figure out where my sight was at. Large print I could read, such as a number plate, normal size print I couldn’t. I have a ‘blind’ spot between 12 and 1 o’ clock. Although it’s more of a distorted smudge spot than a complete blind spot. So if I was looking at you, your right eye and forehead would be mushed into a bit of a psychedelic swirl just with less colour. Although this is only from my bad eye. My good eye is very good. So all in all I think my sight is still better than my husbands. I measure how good or bad my sight is on him as I think he has pretty bad eye sight so while I’m still ahead, I’m happy.

We walked up some big hills that weekend so that I could feel some physical pain. Burning thighs are a great way of taking away any mental anguish going on. I felt sad about my eye but happy to be alive. It’s a strange emotion as you want to grieve for the loss of sight but you feel ungrateful if you do.  I would of course rather have no sight or no eye and still be living but I needed a moment to just acknowledge that I felt sad. Sad that this whole episode had happened. But reaching the top of some Surrey hills, gasping for breath and rubbing my thighs I was obviously very happy and grateful to be alive.

My eye appointment showed significant sight loss. It was described as ‘candy floss’ in  my eye. There may be something that can be done to help restore the sight, or at least prevent it worsening. Avastin injections. These are also used in age related macular degeneration, they stop the increase of abnormal blood vessels. The injection is actually into the eyeball, which sounds absolutely disgusting and would be needed every 4 weeks. I need to have an angiography first to determine what the blood flow is like in my eye and if all is well I will receive injections into my eyeball. Hurrah!

The tumour remained the same size. I hope one day to report that the stubborn f**ker has shrivelled up and left the party as I’m getting bored with writing that it remains the same. Overtime I keep reading from other eye cancer patients that someone has had plaque and their tumour has shrunk, I question why mine hasn’t? I keep trying to reassure myself that this is not a bad sign but at times I don’t know whether I am reassuring or just fooling myself.

The liver MRI was awful. This time I did actually squeeze my emergency button and ask to come out. I needed to breath. This was my first year scan. I was in the danger zone and was panicking. The wait for results was horrendous. My husband joined me for a walk in Bushy park. I cried. He tried not to. I told him I was scared. How would all the logistics of family life work without me? I was trying to work out how my middle daughter would get to drama in Hammersmith on a Saturday?  I was thinking he would never put the heating on or cozy lamps on. The house would be cold and uninviting. In my head I was thinking the list would be endless of things for him to do if I wasn’t  there. He was telling me how he was trying desperately not to think these things through but when he goes cycling the thoughts just fly into his head. However hard you try to block them and think of the present moment, they are too powerful. I crossly told him that if he once told the kids to put an extra jumper on whilst turning the heating down I’d never forgive him. Warmth, light and cozy sofa throws are what is needed at all times. I remember lying in the bath and flying out of it like that crazy woman in ‘Fatal Attraction’ as I felt I couldn’t breath and was drowning. The anxiety was overwhelming. One day I was on my own and I couldn’t call anyone. You can’t, however much anyone tells you its O.K. to call, you just can’t. How could I call my husband at work when he was probably about to go into a meeting  and tell him that I’m scared? That I don’t want to die, I don’t want to leave them all. So my cry for help went to my eye cancer group friends. “‘I’m scared and I don’t think I can cope.” The response was incredible. I can’t do them justice in anything I say here. They are truly amazing. Through this horrible experience I have observed a real kindness, which is humbling. So a little shout out to the OM warriors, you know who you all are. Thank you. I hope to return the favour some day.

Thankfully my scan was clear. My game of russian roulette was over for six months. I wondered if it would ever get any easier. But for now its onwards and upwards. You are now all up to date with my story. Tomorrow I’m off to the eye clinic to see if I can have these horrible injections. Fingers crossed. I’ll keep you posted.

Other Support

~ justaneye73 ~ Leave a comment

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A strange thing about being diagnosed with cancer was that I didn’t feel I had it. At times I felt a bit of a fraud. I looked well, I had no hair loss, weight loss or any other classic cancer signs. I just looked like a normal person. But as I did have it, I was open to any help on offer. So soon after diagnosis I went and registered at the Mulberry centre in Isleworth, it’s a cancer support charity for anyone effected by cancer. I didn’t know what support I wanted, I was probably just going through the motions, but I had heard good things so thought I better sign up. I had only been out of hospital for about a week so my sister drove me down. As  we walked in  I noticed it had a lovely warm atmosphere. People are very inviting. I could actually imagine going there to relax. It has a slightly, lovely, meditating garden feel about it, rather than a grotty day centre feel. While there I saw a lady struggle to come in, she looked weak through, I was guessing the brutality of chemo, she had hair loss, was very thin  and I was standing there looking like I had a bit of conjunctivitis. See? A fraud. My cancer wasn’t bad enough to be there. I filled out the forms and left. I told my sister I was never going back. Those people were ill and I wasn’t. I didn’t want to be associated with cancer. Little did I know then that in a couple of months I would be attending the centre weekly.

The other time I felt a bit of a shock at being linked to cancer was before my treatment. Again with my sister we were talking about who I had told, who I still had to tell and who I couldn’t cope with telling, so  was hoping to delegate the task to her.  It’s a bit like organising a wedding,  who to invite, who not to invite, but obviously not as much fun.  My sister said “I haven’t told such and such you have cancer.” It physically stopped me in my tracks. I’ve got cancer?  Cancer? I hadn’t heard the word really since diagnosis and the 24 hours after. Now here it was being bandied about in the middle of a pyjama aisle in Marks and Spencer’s. I had cancer. When people describe being told they have cancer  being like a physical punch, they aren’t wrong, and the blows just keep coming to take the wind out of your sails.

I had mentioned before, that I had received a lot of support from the eye cancer Facebook group, that was set up by Ocumeluk, the eye cancer charity, and they were having a conference in September, just before my next eye appointment. I  had it sitting in my e-mails and I wasn’t sure whether or not to go.  I felt strange being associated with cancer. I didn’t want to be associated with cancer and  I didn’t want to be frightened by ill people and be standing there like a fraud again. But after my last eye scare I needed to arm myself with all the information available to me while I was in a mentally stable place to take it all in. Also I felt I had made a few friends in the group and they had said they were going. So a little bit like a kid in the playground saying “I’ll go if you do” and also because my husband  said he would come to hold my hand, I went.  I was really pleased I did. The ice was broken very quickly when a lovely man bumped into me with a cup of tea, “sorry didn’t see you there. Prosthetic eye.” I was standing there deaf in one ear while he spoke to me with sight only in one eye and I started to laugh. As we spoke I realised I actually couldn’t tell which eye he meant.  I asked him which eye had been replaced as I did many people that day, the prosthetics are amazing. Really incredible. It was the first time I had ever met anyone else with eye cancer and there must have been over 60 of us in the room. Everyone was asking each other about their own stories.  Many people there had liver mets and were doing incredibly well on the immunotherapy’s. There were talks on various treatments, most of which went over my head, including one from my jolly liver mets guy. I was glad to see he was legit and I wasn’t seeing a dodgy quack.

I came away and for the first time I felt there was hope, a lot of it. I felt the same enthusiasm for the immunotherapy that my oncologist had and had tried to tell me about at the beginning of this process, when I had just wanted to punch him. Things are really moving on in the cancer world. A year down the line I don’t feel the same physical blow when people put me and cancer in the same sentence. It has lost its force to take the wind completely from my sails.  I know I still get scared at scan time, who wouldn’t? But there are treatments and plans and people working tirelessly on our behalf to find a cure and prolong our lives.  So cheers to the brainy scientists.Keep up the good work!

A Peaceful Day for a Sail?

~ justaneye73 ~ Leave a comment

So the summer was spent toing and froing from home to the eye specialist. I was told after my initial post op checks I would eventually get to six monthly check ups. This didn’t seem to be happening,. The goal posts kept being moved. There was eventually signs of improvement. It was the orange pigment. It had gone. Nothing else had changed. I was reassured that this was nothing to worry about. As my tumour was small it actually may never shrink. I wanted it to shrink. I wanted the damn thing to disappear. I didn’t want it lying there dormant waiting to wreak its havoc whenever the fancy took it.

My post op in June was satisfactory, I was told I could have a two month break, that was a fantastic relief. It was the longest stretch of not seeing anyone, it was the start of the kids summer holidays so I was hoping I could put it all to the back of my mind and relax. But of course my good friends anxiety and panic wanted to pay a visit. Along with the decorator who I was starting to suspect didn’t have a home to go to. Not having any breathing space from the kids or from the decorator who had taken over my house, telling me to not look so worried all the time, I was slowly going doolali. The summer was hideous.

I’m not sure whether it was wrong or not, but I began reading and googling constantly, I needed  eye cancer stories. It was the only thing that could calm the anxiety. I was trying to find a mirror of my story. Someone with the same size tumour who had never developed metastatic disease. It’s silly really but it was the only thing that would work. I would happily tell my husband about someone with a larger tumour than mine, who needed an eye removed but was 17 years on and healthy. These stories made me feel calm and gave me hope. The danger being of course that I would happen across a mirror story of mine where tragically it had developed into something worse. And of course with odds of 50/50 it was only a matter of time.  Your mind is on high alert for any information. You read between the lines. Who said what and what did they mean? And the horrible information that I didn’t want to read came by accident.

I was reading through posts on one of the closed eye cancer groups. You’re  only allowed in if you’re in the special cancer club. Ocumeluk had told me about them, the fantastic eye cancer charity. The post wasn’t anything that had piqued my interest, but I was reading people’s comments and replies while also thinking about dinner when I saw it, like a flashing beacon with alarm bells. A woman who was well-known on the group, with advanced metastatic disease,  who had a medical background and was the font of all knowledge, replied with “….well I knew my tumour would metastasize as it had orange pigment and fluid…” her tumour was 8 by 2. She was my mirror. I physically heaved in horror. With panic I flew onto the forum asking how she knew?  Where was the research?  Where was her information from? She was off-line.  I think because we are a small group, there aren’t many of us, people sense your panic and step in. I received a reply within seconds from one of the reps who was on-line. “Ruth, mine was bigger, with orange pigment and fluid, I’m 6 years on. No spread.” I think I had been holding my breath. I exhaled.

My husband wanted us to have a nice holiday to ‘take my mind of things.’  Anyone with cancer will know, you can’t take your mind of things. However hard you try. We thought the best plan was a busy holiday, sight-seeing, different locations. Move around and don’t keep still.But I was exhausted. My lack of sleep had caught up with me and I was suddenly sleeping beauty, well less of the beauty and more of a comatosed lump. An all-inclusive was what was called for. The kids could be entertained if needed and I could relax and sleep. That was the plan. What we hadn’t accounted for was my eye playing up. The flickering that I had seen slightly at the beginning of this process, was back. I would lie under my umbrella with a sun hat on looking out to sea at the para-sailers floating by and just notice flickering and flashing. I was restless. I wanted to go home but I needed a break. That’s the other bastard thing about cancer, it dictates if and when it will give you a break, you are not in charge anymore. So we had paid for a wonderful holiday, the kids were happy, my husband had time of work and I was convinced my tumour was growing. There was only one way to cope with this, I was going up in a para-sail.

The unusual thing about this is I am actually terrified of heights. My first and last ever ski holiday I had to be rescued by some sort of mountain rescue as I has taken the wrong lift up and instead of getting off at the top of a green run I was at the top of a black run. My rescuer accused me of being colour blind as well as scared of heights. So my eldest daughter was right to look concerned and try to talk me down. What she didn’t realise was that I wasn’t scared. I had already experienced the worst fear of my life, not the ski experience, although that was pretty bad and actually not the cancer. It’s the fear of not being around to see my daughters grow up. The fear of dying and leaving them without a mother. So what was a stupid old para-sail when I was dealing with all of this. I took my fearless middle daughter with me and we floated up to the clouds. It was incredibly quiet up there and peaceful. For a blissful ten minutes I just marvelled at the beautiful world below me and didn’t think of my eye at all. It was incredible.

I think I might book a skiing holiday next!

I’m radioactive

~ justaneye73 ~ Leave a comment

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

~ justaneye73 ~ Leave a comment

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.

Ticking off the to-do list

~ justaneye73 ~ 2 Comments

Surgery was booked for Monday and I had a few things to do first. What I had been putting off the most was reading up about the biopsy and making a decision on it. I had been told that a biopsy could be done of my tumour. It would give me an idea as to whether or not by tumour was aggressive. It is not 100% accurate, but pretty close. There is also a tiny, minuscule risk of seeding. This is where when they try to take some cells away with a needle they accidentally let some loose to cause damage elsewhere. This biopsy could be done in Liverpool and would need to be done before my radiation treatment. During this time I joined the wonderful eye cancer charity, Ocumeluk, which offers all the information and advice you may need on eye cancer. They also have closed Facebook groups which I joined to moan to my heart’s content. Asking for people’s feelings on whether to biopsy or not at times seemed like I had opened a can of worms. I was hesitant, I didn’t think I wanted to know whether it was the aggressive type or not. I felt I was definitely in the minority. This was when I needed to take a step back. I came off the group site and read information on my own. During this time I had some wonderful supportive messages from people telling me to trust my own judgements.

The hard decision was eventually made. I decided not to biopsy. It wasn’t an easy decision but it had a number of contributing factors. The idea that there was a small risk of seeding was a risk I didn’t want to take. Many people offering me advice had larger tumours where you could argue it’s easier to take a biopsy from or eye removals where biopsy risk is negligible. The tumour in my eye was only 1.2 mms in-depth. I think you would need a pretty steady hand to insert a needle and aspirate some cells, I’m not saying that my eye surgeon had shaky hands, but it was just a risk I was unwilling to take.The other reason was that I would have wanted only a positive result. If I was going to die in five years I would rather not know thank you. I want to enjoy very day and can only do that by knowing I have a future, not crying for what I am about to lose. Everybody’s decision is completely individual. I felt under pressure to quickly make a decision before surgery and I worried I would regret the one I made. A year down the line I have no regrets. If I could be biopsied tomorrow, I still wouldn’t unless it had an effect on my treatment. I am never happier than sticking my head in a big pile of sand while sharing a cold glass of bubbles with anyone that can swallow.

Next on the to-do list was what to tell the children. It seemed pretty apparent from people with experience of cancer, whether personal or in the professional capacity, that it is not a good idea to keep the children in the dark. They start to pick up on things and often their imagination is far worse that the reality. But I just couldn’t. I didn’t want to upset or worry them. I didn’t want to see them cry, but most importantly I didn’t have the emotional resources at that time to reassure them that everything would be ok, and until I could do that then they were joining their mother in the dark while I had my head in the sand. It was the cowards option but worked in the short-term. So with a brave face I dropped middle daughter off to the school coach for her trip to France. I desperately wanted to squeeze and smell her, cry and tell her I loved her, but instead I smiled bravely, told her to have fun as my independent eleven year old didn’t even take a glance my way as she bounced onto the coach to join her friends. I cried on the way back to the car.

Next was youngest daughter. I had to tell once her sister had gone and I couldn’t put it off. So mid morning, while she was in the bath and I was brushing her hair I asked her if she remembered my eye test. I explained that it was all a little odd as they had found a freckle in my eye and seemingly if left these freckles can make you sick. she asked me how sick, and whether I could die. I lied as I told her that they couldn’t make me that sick, but just a little. Also I would be going blind in that eye (had I forgot to mention that other bit of shit news?), but it would all be ok as who needs two eyes anyway? The hardest thing for her was that I would be in hospital for the week and she wasn’t allowed to visit. Due to the radiation under 16’s were not allowed in. This made her suspicious that things were worse than they seemed. I reassured her that I would FaceTime her and more excitedly she was going to one of her school friends every day after school. I think she even had a sleepover on that first night which was definitely unheard of on a school night.  Plus I had spoken to her teachers and requested no homework all week. No Homework, sleepover’s and play dates everyday? She was ecstatic and I was starting to worry that a week in hospital wasn’t quite long enough. She was starting to see the benefit in this “naughty freckle” as we were now all calling it.

My eldest daughter was meant to be at uni, but like all best laid plans, decided to return for a few days in between exams. Being nineteen meant that I had to be honest with her. I reassured her that it was small and caught early but pleaded with her not to google it as it sounds hideous. I started telling her of all the people I knew with really bad cancer who were still around to tell the tale. “Look at so-and-so, she should have died years ago, she’s still here! And what about what’s his name? Walking corpse but still around. And you could die in a car crash tomorrow, but don’t go round worrying about that.” So all in all I think I managed to reassure my children that there deaf in one ear mother and soon to be blind in one eye mother would be around for years to come. Lucky them!

With most of my list done there was only one thing left to do. Pyjama shopping. And I’m sure I probably  enjoyed a sneaky glass of bubbles while doing that too. Roll on surgery, I was now ready for you.