justaneye

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!!!

Hmm…I don’t know.

~ justaneye73 ~ Leave a comment

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Sometimes (most of the time) I sit at the keyboard unsure of where my blog is going. I feel I have only one sentence to write so it’s not really worth a blog, but then my verbal diarrhoea kicks in and I realise I’ve written quite a bit. Today though I think its going to be a short one because I know I have no answers to what’s on my mind.

A few weeks ago I was talking to a friend who had recently been given the ‘all clear!’ Happy days. He will remain being checked for 10 years but it has gone and is very unlikely to return. Fantastic! He asked if I was the same? All clear with regular checks? My answer is always a little tricky. Do I lie and continue along the jovial lines, smiling, laughing and high fiving each other? Or do I pop everyone else’s balloon around me? Will I then become the miserable bitch that no-one wants to see, because my life and my truth is too painful and hard for others to deal with? It casts a cloud on your sunny day. It’s difficult isn’t it? I spend most of the time happy and smiling in the belief that the f**ker won’t return, but if you ask me a question, should I tell the truth that  50% of ocular melanoma patients develop liver mets?  It is then terminal. Or should I lie and protect my interrogator? Rightly or wrongly I don’t protect my family and friends, they get the truth, warts and all. This is  because I need to feel I’m not alone with my fears and concerns. A problem shared is a problem halved and all that. So my reasons are entirely selfish, I’m looking for help. Those kind enough to ask but who are not in the ‘inner circle’ are treated to a “yeah fine” when enquiring after my eye. I know they secretly breath a sigh of relief and that’s fine too. My husband says I shouldn’t worry about these things, but I do. I don’t want people to avoid me or feel uncomfortable around me, just like I don’t want to avoid people and feel uncomfortable around them. So everyone is after the same thing, it can just be a little awkward getting there. My blog allows me to answer a lot of difficult questions people have and helps me to avoid uncomfortable conversations. But to me humour is the main thing that breaks down the barriers. At a recent family event my brother-in-law turned to me saying “yeah yeah, don’t come with your eye cancer story, you’ll get no sympathy from me. Ooh I’m deaf in one ear and going blind in one eye. Doesn’t wash. Go and get a round in.” And I loved him for it.

But I’ve digressed. My reason for this blog, my question that I have no answer to, is what most of my friends ask when they are told the truth. What my ‘all clear’ friend asked when I didn’t join in the happy dance. The question I get time and time again is “God. How do you deal with that?”

Answers on a postcard please xxx

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

Memories

~ justaneye73 ~ Leave a comment

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Today I had a Facebook notification informing me that I had ‘memories to look back on.’ When it pops up I now always feel a little apprehensive about what it’s going to contain. I never used to, I used to look forward to the meander down memory lane  looking at how small the kids were, remembering days out with friends, or boozy nights with even better friends. But now  as I have passed my first year cancer diagnosis anniversary, at times my memories are cancer related. This is what makes me a little apprehensive. If I remind myself how bad I felt, will those feelings sneak back?  If someone said to me “you were really scared of dying” would I start to feel anxious again as I revisit the dark times?

I was with a good friend recently who has also been going through sh*t times. She said “I hate those bloody memories as it reminds me how good we had it.” But todays memory didn’t make me think that, it made me think how far I’ve come. I scanned and read my post, what I’d written a year ago and felt a slight warmth that that isn’t me now. It was like reading a strangers post. I wanted to respond ‘oh you poor thing’ as it felt alien to me. And that was a good feeling. My friend isn’t there yet, who knows whether she will ever get there, I didn’t know a year ago or even six months ago that I would be here and I am fully aware that at my next scan things could change dramatically, but for today I’m pleased. I’m pleased my post reminding me of my fear didn’t make me feel bad. I desperately want my friend to get here too so we can again look back on memories not with loss and sadness but with the knowledge and battle scars of what we have survived.

This is my post written 22/07/2015

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I’m obviously pleased to see my reference to bubbles, even after everything I had been through. Which reminds me, it’s Friday, the summer holidays and the sun is shining so I’m off to pop a bottle in the fridge. Have a wonderful weekend all. xx

 

Plea for help

~ justaneye73 ~ 1 Comment

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My husband asked me if I was going to do any more blogs over the summer. “No” I replied, I may have a lot of verbal diarrhoea and lots to say but I am keeping this an eye cancer blog, so unless something to do with my eye pops up my blog will remain quiet. “I probably won’t write anything until my next appointment in August.” I told him. And then of course something happens, something that wants me to race to the keyboard and fire out a blog and this one is a plea for help.

While sitting in the garden with Mr J. the other day enjoying our ten minutes of British summertime, I was talking to him about the things I needed to do before the holiday. Usual holiday lists, getting the kids hair cut, picking up the dogs vaccination card, checking we have enough sun cream etc. and I need to get my roots done, I’d suddenly noticed about 4 cms of grey re-growth. “You look fine” he muttered. Fine? The pause that followed obviously indicated to him that that wasn’t the correct response. Granted if he’d said “damm right you do your hair looks awful” that also wouldn’t have gone down well. A happy medium of “O.K  try and fit it in and if you need a hand with the kids let me know” would have been perfect. Sensing his mistake he did what I guess most blokes do, try and make it better with a compliment, “Have you had highlights done? They look nice.” and he smiled. Job done. “Yes I have” I smiled back. ” About 3 months ago.” And this is what made me shudder and race to the keyboard as I thought, how bad does it need to get before he notices?  I think if I was made of carbon fibre and had two wheels he’d notice every tiny detail but other than that I don’t stand a chance. And with the prospect of ever decreasing eye sight this is a little scary as I may start to rely on him more and more to notice such things. When we go out for an evening he’ll often look at me and say “you look lovely Rufus.” I think he thinks I’ve been wafting around upstairs doing nothing, he doesn’t realise the hours of scrubbing, waxing, plucking, drying, teasing that go into looking so ‘natural.’

When my sight had got bad a couple of months agoI had noticed something that is difficult to do with one eye. Eye make-up. Closing my good eye to apply eye liner or eye shadow but only been able to see a blur is quite difficult. Eye liner got abandoned, eye shadow became a very subtle shade that wasn’t very noticeable and  Mr J. laughed as he said “imagine if you have to rely on me to do your make-up” No lets not as that will never happen. But the hair incident started me thinking of all the hairs that need plucking and removing that luckily enough I can see at present. And this is where my plea for help comes in. However often I look in the mirror, one day suddenly there is a long dark hair sprouting from my chin. Where it came for I don’t know as I was sure it wasn’t there when I looked last night. But it suddenly is there and is plucked very quickly. Mr J has proved that he will never notice these hairs. So as my eyesight deteriorates and before my husband realises that he is actually married to a silver haired baby mammoth, could all my friends start carrying around a small tube of immac and tweezers?  And if we are out for dinner and you notice I’m competing with the hipster on the next table, please do me the honour of letting me know and pointing me in the right direction. I can cope with being deaf in one ear and I’m coming to terms with going blind in one eye but hairy as well? No thank you. Your help in this matter will be much appreciated and we can then enjoy many a glass of bubbles and hopefully a very long friendship. Cheers.

P.S if I notice you sprouting any in the meantime, while I can still see, I’ll return the favour. Love Ruth xx

Holiday time

~ justaneye73 ~ 1 Comment

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This week my blog is going onto the Macmillan site. I’m quite excited about new people visiting my blog, last check was well over 2000! But also a little worried as I am also going off on holiday so there will be no new blogs for a while. I promise to blog the minute I return and I am ignoring a hint from a friend that I might want to blog on the beach. I can guarantee unless my eye decides to play up I won’t be blogging from the beach. Those that are new to my site, I have told my eye cancer tale like a story so its best to start at the beginning. The calendar on the right can take you to the start, its only back to May so don’t worry you aren’t about to read War and Peace.

My next eye appointment is in the middle of August. it was meant to be July but I sort of put my foot down and am not letting it dictate my life anymore. I’m going on holiday, the appointment can wait. Obviously if I had any signs that things weren’t stable I would have a re-think, but I don’t. All is good. Last years holiday wasn’t relaxing so months ago we booked a holiday that the kids have had on a count down app since day 186! We are off to Florida.  Disney, Harry Potter and all the rollercoasters they want followed by a chill out on the gulf side. As a family we are enormously excited. I’m most excited to just be together. With my husband and beautiful girls having a laugh, making memories. The girls are obviously most excited about all the rides. They have spoken of nothing else for the past 186 days!

But we had a tiny mishap days before we are due to leave. Middle daughter, she of the rounders and drama auditions and over dramatic books has broken her little finger -playing rounders! I reassured her on the way to x-ray yesterday that it would be a tiny hair line fracture with no needles or pins needed. It would be strapped up and we would be out of there packing our sun creams and T-shirts by lunch. But like all best laid plans, she needs plastic surgery, a pin inserted, a general anaesthetic. We go on holiday in 7 days I wanted to scream. The nurse looked at me a little like ‘What more important? Your daughters finger or your holiday?   Now this is where I exhale. Because lady, this isn’t just a holiday. We have had a pretty sh*tty year and we need a break.  But I smiled. I’ve coped with far worse over the year.  Tomorrow I will call the hospital to confirm her appointment and when I am seen I will let them know about our annus horribilis and plead and cry that she has to be seen and dealt with before Friday. I would never normally tell anyone about my cancer treatment but now I think, cancer is so crap that I need to get something good from it and if it happens to be getting my daughter shoved up the operating list a little quicker so that we don’t have to rearrange or cancel our holiday than so be it. I feel somewhat invincible, I know how important this holiday is for us all and am going to make damn sure it happens. I have reassured my gorgeous girl that broken fingers in no way ruin the fun of the rides. I would also just like to make a little point that it is her little finger that needs surgery, so it’s being shoved along the hand surgeons list and not in any way taking an emergency surgery place or a cardiac place, I don’t want people thinking this cancer treatment has made me a heartless b*tch, it hasn’t.

So if all goes to plan, she will be wearing a waterproof cover on her hand in Florida while enjoying all that is on offer.I will be thinking about cocktails on the beach and not blogging on the beach. And life will truly be good. Happy holidays everyone!

Life just gets in the way

~ justaneye73 ~ 2 Comments

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I’m conscious of the fact I haven’t completed my blog for a while.There is no reason other than life. Life has got in the way of me thinking about cancer, which is a great place to be. I realised this had happened when I was having a moan about the results of the EU referendum and the England football team and thought Wow! Isn’t that wonderful to care?  After diagnosis and during treatment nothing could rouse me from my fearful state. Really, you could have said this whole life thing is just one big conspiracy theory and we are actually all aliens and I would have barely registered your mouth moving. But now here I am caring again.

The only recent event that happened that did make me pause, was the death of the great comedian, writer Caroline Aherne. She has joined a list of genius people that have passed away this year including Alan Rickman and David Bowie. Before my cancer diagnosis I would have been with everyone else thinking how tragic and sad, but having cancer as well adds another dimension to those feelings and that reaction was what made me blog today. Well that and being bullied by various people on why I haven’t been writing. Don’t worry you shall remain anonymous. I’m sure I’m not alone in my feelings and reactions, I would imagine other people with cancer feel the same. Now when I hear someone has tragically died, I’m shocked and sad like everyone else but I want to know immediately what they have died from and in the back of my mind I’m thinking ‘please don’t let it be cancer.’ Why? Because that confirms to me that people die from it. I’m not stupid and I know off course people die from cancer but hearing of a death makes it so real. When I am living in hope that all the advances are curing people I look at the celebrities who could perhaps afford to pay for the best care, and if they can’t survive it what hope is there for us mere mortals? After confirmation that all of the above passed away from cancer my next reaction is ‘of what? cancer of what?’ Please don’t let it be eye. My odds on it not being eye are luckily quite high, but only due to the rarity of the cancer and not the high survival rate. Caroline Aherne did have a form of childhood eye cancer. It’s different to mine, but hearing it stops you in your tracks. For a moment again the world stops spinning on its axis. I then feel very lucky. Lucky that I am still here caring about this thing called life. Caroline Aherne said that her mother told her only special people get cancer, so as she had eye, bladder and lung she must be really special and of course we know she was. An utter comic genius.  But I would like to stay not very special at all please, so that I can continue to moan about things that make me cross, phone radio stations (?!) as I did yesterday calling James O’Brien and forget to blog because, well because life has got in the way.

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.

Telling the kids

~ justaneye73 ~ Leave a comment

In October I had my second MRI scan. Bizarrely it wasn’t as awful as the first time. I’m not sure if it’s  because I had worked myself up into a bit of a frenzy, that it didn’t seem quite so hideous. So to those about to experience a first MRI, after reading ‘my first MRI’ post you might be slightly apprehensive, but will come out saying “that wasn’t that bad!” So I think I have actually done a bit of public service. No need to thank me, you’re welcome.

I  requested Magic 80’s hour this time round and when Wilson Phillips ‘Hold on’ came on I was a happy woman. This caused a stream of conversation after about what is your favourite bit in Bridesmaids. The radiographers’ was the wedding dress scene, but mine has to be the plane scene, “I had a dream we were in a plane crash. You were in it.” Surreal conversations had when you are waiting to find out if the cancer has spread. So waiting for results  comes next and then thankfully I received an ‘all clear.’ Another excuse for bubbles and celebrations. I was aware that the fear wasn’t as bad this time around, as I was expecting an all clear, due to only being  six months post diagnosis. With two years and ten months swimming around my head as the average time it takes to get to the liver, I had sort of worked out that the danger zone is from one year to four. My liver mets guy said he had heard from my eye oncologist about the fluid. This worried me as I wondered why she would call him and inform him unless this had alarm bells ringing for them both. I think those alarm bells will now remain ringing, but I hope time will prove them wrong.

My eye check up in December was unremarkable. My stubborn tumour still hadn’t decreased in size but remained looking dormant. I informed my eye doctor that my next check up for the liver was in April and if all was well maybe I could go onto six monthly checks and have everything done in one day? Sounds a reasonable request. She eventually agreed that she would leave me for four months until April, but I was now never going onto six monthly checks. I would always  be seen four-monthly. What?! and Why? But actually did I want to know that answer? No. A little bit like the biopsy, I don’t want to know. She informed me it was due to my age, yes, likely story. My age hasn’t changed since I had been seeing her, I haven’t suddenly got younger, but I wasn’t going to argue the toss, I didn’t want to know the answer anyway. Christmas was around the corner, I was escaping from all hospital check ups for a full four months, I was content with that.

This was when we decided to tell the children. With things seeming more calm I felt I could do it without crying. Actually that’s all a big lie, I remained a coward. It was my eldest daughter that came to me and said ,”mum, you need to tell T.” My youngest had gone into her elder sisters bedroom when she was home from uni for the weekend and said “I think mum has cancer.” My bright little observant button had watched us over the previous months, had been watching the tears, the hugs, the cards received from friends that had been put away so they couldn’t read the heartfelt messages, the flowers arriving, the neighbours knocking on the door asking how I am and had realized what was going on. She had kept it to herself because I was too selfish to talk to her about it. I had been thinking about myself and my emotions and hadn’t put her first. That is my biggest regret in all of this. I should have told her sooner. Even when she would hug me at night and cry and tell me she didn’t want me to die, I’m ashamed to say I would laugh it off and tell her not to be silly. I just had a naughty freckle. I couldn’t bare to see her in pain but I didn’t realise I was causing her more pain by keeping it from her. Thank goodness for her older sister, other wise I m not sure how long I would have tried to hide it under the carpet.

Telling the children is obviously hideous. A moment came up in a conversation so I took it and told them. They cried, as expected,  but the biggest shock was for my dizzy middle child. She is called ‘dizzy middle’ for a reason. Her life is one of no concerns and worries. She is the one that struggles most in school,  but she is our sleeping beauty who doesn’t have a worry in the world. She is laid back and always laughing. And this came to rock her world, not in a good way. Maybe also because she was in France while I had been in hospital she couldn’t quite comprehend when this had happened. She needed fast reassurance that my check ups were all O.K and now has swiftly moved on. In fact I think she’s probably forgotten about it. There are rounders games to play and drama auditions to attend, why worry about your mum’s dodgy eye? And she has a point.