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We were all strangers once

~ justaneye73 ~ 3 Comments

 

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

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

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

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

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

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

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

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

Until next time.

Cheers!

Cloud cuckoo land

~ justaneye73 ~ 3 Comments

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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!

Remission

~ justaneye73 ~ 1 Comment

 

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!!!

Summer catch up

~ justaneye73 ~ 4 Comments

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

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

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

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

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

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!

Stay Positive! : )

~ justaneye73 ~ Leave a comment

 

When I look back that  was a pretty hard time for me. The kids were still on their summer holidays so I was getting no time to myself to just think. And yes the decorator was still here! I tried desperately hard to concentrate on other stuff. My middle daughter was moving up to secondary school so there was great excitement for her there. Pencil cases and new pens needed getting, a cool new school bag, but my heart wasn’t in any of it. I felt so low for the first time since this had started. I had had my fair share of panic and anxiety but now I just felt flat. I had no enthusiasm for anything. I wanted to walk away from everyone and everything. I remember sitting in my car in traffic near to Hampton court Palace where we live, the kids were nattering away but it just seemed like background noise, as if I was listening through water. At that moment I am ashamed to say I wished I had never had them. They were causing me too much heartache. I loved them with such intensity I couldn’t bare the idea of not being there, and I couldn’t envisage the pain I would put them through if anything happened to me. I started to think if I didn’t have children surely this whole cancer thing would be easier? I had to stop myself just getting out of the car and walking away, away from all of it.

I called my husband, I was crying, he told me how well I was doing. I said through gritted teeth “I am not doing well! I can’t cope with this anymore!” We both look back at that time and are amazed we didn’t see it coming sooner. I was entertaining the kids every day, trying to keep them out of the house while the decorator just generally made a mess. My husband was back at work. And I had this enormous concern that my tumour was active. I didn’t want to go back into hospital, I didn’t want my eye removed but more importantly than that I was terrified that if my tumour hadn’t been eradicated by plaque brachytherapy than it was probably an aggressive bastard that was perhaps on its way to my liver. This was what kept going round and round in my head. I needed to do something, I couldn’t just sit there I needed to put my trainers on and run, but my consultant had told me not to run or do anything strenuous. I was going stir crazy. All the mad cancer thoughts started coming into my head. I wanted a different cancer, a cancer that could be treated. Why did I get lumbered with this crap one? I wanted treatment. Now. I didn’t want to wait for it to return to kill me, give me chemo, drugs anything. The feeling of drowning was immense, I would physically lift my neck to take a full gulp of air as my lungs weren’t full. No one could help me now. The blind panic had set in and I couldn’t listen to anyone or anything.

People try to say all sorts of things to make you feel better. Not usually that helpful,  I actually just prefer it when people make me laugh. A good laugh that makes you cry solves all sorts of ailments.  But it’s usually at times like this that someone turns up with that classic nugget of wisdom. Something they think will solve everything. Something they think you will  never have heard before, but if you have you obviously didn’t listen properly so they better repeat it. They turn to you to you and say, “stay positive!” Aghhh!!! The one thing I have learned to NEVER say to someone with cancer is to ‘stay positive’ I can’t even explain what a complete red rag it is to a bull. A very close friend said I need to tell them that I also have two words of wisdom for them and the first one begins with “F!”

A visit to the GP was finally in order. “Ruth we can prescribe you something.” I didn’t want drugs. I needed the strength within myself to deal with this but my strength stores were running low. She asked me what it was I felt I needed. “I don’t want to feel scared anymore, that’s it. Please just take away the fear.” She listed all the things people try, yoga, running, counselling, mindfulness, cognitive behavioural therapy,  “and if things don’t work, come back. Anyone at the surgery will prescribe you something at  anytime you feel you need it.” So  I had my list to work through, this in itself helped enormously. I had something practical to be getting on with.  I wasn’t just sitting there waiting for the inevitable.

About ten days after my last appointment the flickering stopped. Just stopped. Suddenly.  It seemed like it had just happened overnight. I kept closing my eye and checking. It had definitely gone.   I called my husband in tears. “The flickering has stopped. It’s gone!” this had to mean that the fluid was gone and my tumour was no longer active. I could feel myself start to breathe again. Usually at times like this I then just feel totally exhausted.  All the built up tension I’ve carried around with me starts to seep away and leaves me physically and mentally drained. I know  I still had a few weeks to go, but if the flickering didn’t return perhaps finally the ‘naughty freckle’ was dead!

Zoo exhibit

~ justaneye73 ~ Leave a comment

The weeks leading up to my post op appointment were a little strange for me. I had the physical discomfort of feeling the sharp dissolvable stitches in my eye, the exhaustion from the whole experience and the sadness and fear that was part of the incredible cancer experience (not!). Writing this post I am glad I am writing it in hindsight, because at the time if I had had to describe my feelings I would have just shouted that everyone is incredibly insensitive and I hate the lot of you!  Unreasonable? Absolutely! People asking how I am? How bloody outrageous!  Wanting to check I’m O.K? Inconsiderate cow! Yes I was entering the angry phase and no one was immune from it. Deep down I knew it was incredibly unreasonable so I started to avoid people. I didn’t want to upset people who only wanted to show they cared, so I hid as otherwise I would have offended everyone. My husband says I have a fiery Irish temper (my family are all Irish) and is pretty used to my outbursts. An old work colleague was used to me writing a scathing e-mail (not to her!) that would sit there for at least an hour, by which time I would return and reword it in a far kinder more diplomatic way. There is something very de-stressing about writing “Bitch! Bitch! Bitch!! Bloody idiot!” and then returning to say “Thank you for your response, very kind of you but unfortunately …..” You should try it. Just don’t accidentally hit send!

At around this  time I happened upon Sheryl Sandburg writing after the first 30 days after the loss of her husband, the end of sheloshim. I wasn’t grieving a death of a loved one but I received so much comfort from her post. Where I would angrily shout “stop asking how I bloody am!” She wrote far more eloquently:

‘Even a simple “How are you?”—almost always asked with the best of intentions—is better replaced with “How are you today?” ….. When I hear “How are you today?” I realize the person knows that the best I can do right now is to get through each day.’

I would never had got it right either before experiencing it first hand. I wouldn’t have understood the fear that creeps into every pore of your body. You can’t until you experience it for yourself. I had some people ignore me, I know they felt uncomfortable, I had people come over and demand to know the symptoms, just so they could confirm to themselves they didn’t have the hideous disease. I had lots of cancer stories. I strangely met two people who had had loved ones with eye cancer. One had survived, one had died which just confirmed the 50/50 statistics.

But with all of this I was starting to feel like a zoo exhibit. The more people wanted to see me to comfort themselves that I was doing well, the more I wanted to hide. I felt anxious because I couldn’t answer their questions. The answers frightened me so discussions would be kept to a minimum. I opened up to three people, my husband, my sister and a close friend. I didn’t want to talk about it all the time. I learnt quickly to smile and avoid. I became an expert at spotting people and putting my phone  to my ear. I’d pray it didn’t ring as I was pretending to speak. I’d hide in my car, I missed hockey matches, social gatherings, assemblies because my confidence had hit rock bottom. I apologise to all the people I avoided. You did nothing wrong. I wasn’t coping and it has taking me almost a year to realise that. My husband realised how hard I was finding it after I had told him that a decorator we had in, who kept getting colours wrong, thought I was concerned about what was being slapped on the walls. I obviously didn’t care if he had painted it bright orange with polka dots, I had more pressing concerns. He made the mistake of telling me to not look so worried all the time! “Come on love, smile!” I exhaled as I slowly walked out of the room. I wanted to pick up a hammer and batter him.

I was soon making the familiar journey from Hampton to Waterloo. To find out that my tumour had been burnt to smithereens I hoped. I obviously hadn’t read that far into what to expect as it can actually take six months to show signs of  improvement. So I was a little disappointed with a  “no change,”  but did what any normal person would do in similar situations. I raced onto my eye cancer group to check with them that my surgeon was telling the truth and not just fobbing me off. They all confirmed it to be true, and actually a quick shrinkage can be a bad sign as it can show an active tumour. If it can shrink  quickly, it can also grow quickly. So slow improvements are best, no change next on the wish list, with fast shrinkage or growing not wanted. I was to go back again in another two weeks to see which path my tumour would take.

 

 

I need Valium

~ justaneye73 ~ 1 Comment

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.