Cloud cuckoo land

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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!

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I’m not ‘brown bread’

 

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Just to reassure people I’m still here. Alive and kicking, maybe just a bit fatter after gorging on lots of delicious  food over the holidays.

Over the Christmas break while approaching the New Year I started to reflect a bit on my life, to think about what I wanted  to change.  How I wanted my year to pan out and what I wanted to achieve. I’m quite impulsive, I make a decision and don’t give an awful lot of thought to it, I just do it. Which is what happened when I thought, I don’t like Facebook anymore and  that is something I want to change for 2017.  I don’t want to ‘like’ my hundredth Christmas tree. Saying amen to a child with cancer on my timeline will not cure them and I don’t want to pass something on because then money will come my way. It won’t and you’re stupid to believe it will. So as I was turning into an intolerant, grumpy women I decided to say Goodbye to Facebook. But that was the problem, I should have said “Goodbye” instead I just turned it off, deleted the app  and continued on with my eating and drinking too much. Well it was Christmas – any excuse!

So I have had numerous texts and e-mails from friends asking if I was O.K? Had I ‘defriended’ them? No, I have sort of just defriended myself. Was I unwell? Not as far as I’m aware. And then there are the friends who you just contact via Facebook, who you have no other contact details for, not because you aren’t good friends but just because it’s easier to message through it. A few managed to contact me via this blog which was very resourceful.  I had planned  to not update my blog until next week, after my eye appointment. But sitting enjoying a glass of wine with my husband last night I was mentioning that a few people had contacted me and been worried, I felt bad as I should have said I was going and not just disappeared. He said that people would think I was ‘brown bread.’ What? I was confused. “You know, dead!” He obviously found it mildly amusing. As we were chatting about whether to go back onto Facebook to just say “goodbye” or not an e-mail  came through from a friend who I have known for almost 13 years, as our daughters share the same birthdays. I haven’t seen her for nearly 10  as she moved quite far away.  She was concerned that I had become unwell. It made me think that because people know me and I have had cancer, they are tainted with it too. Whereas I always used to think it was just me that worried every ache and pain was new growth, I now realise that others worry about that too. And I’m sorry for that. I really am. Just like I don’t like it when my youngest daughter writes stories about illness and losing someone, I don’t like it that people worry about me. I wish you had all just thought “where’s she gone? Unsociable b*tch!” I’m sorry you had to think of this ghastly disease that seems to permeate every interaction of my life. I want to reassure you all I am well. I have started jogging slowly after a hamstring injury and am all wrapped up in my two youngest daughters’ January birthdays. More cakes and bubbles? I hear you cry. Well if you insist.

My other big sharing news and a much larger New Years Resolution than leaving Facebook is something I only shared with a few people last year as I felt slightly embarrassed and not good enough. But I am sharing it now as I am determined to do it and finish it. My book! My blogs decreased as my book writing increased. I am 20.000 words into a teen fiction. My dramatic (dyslexic) middle daughter is my proof reader and she is “loving it!” Now if praise like that doesn’t make you go and pop a bottle in the fridge and celebrate, I don’t know what will!

Happy and healthy 2017 everybody!

Worrying about whether I have anything to worry about.

 

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So most of my appointments I’m accompanied by my husband as two ears (well three, if you actually count his two and my one), two views, two opinions are always better than one. But  on Wednesday  I trundled up on my own, as the appointment time was late and we had come down with a houseful of sick kids, Mr J was waiting at home as I reassured him I really wasn’t worried. Google found no horror stories so everything was good. I should know by now never to feel complacent, because this rare cancer sh*t will always grab you by the ankles, shake you and yell “what do you mean you weren’t worried?! Fool! Have you learnt nothing from this?!” No, I just like to stick my head in the sand.

Anyway I digress. I was met by my very thorough, conscientious, consultant, who definitely never leaves any stone unturned. She informed me that she had wanted to see me as the grey pigment from the ‘very good’ photos I had taken, could be one of three things. “The first, it could be the tumour growing through the white of the eye.” Sorry, what?! F**king google didn’t tell me that! I now wanted my husband sitting next to me. How did I think this was going to be O.K? I instinctively brought my fingers up to my eye, it was smooth, no bumps, surely not the tumour growing? Hang on a minute wasn’t I supposed to be in f**king remission?! She was continuing,”secondly it could be thinning of the sclera (white of eye) due to radiation.” Yes, I was thinking, that’s definitely what it is, “thirdly it could be the white cells called macrophages that come to mop up the debris of a regressed tumour. They sometimes leave pigmented staining on the eye. So let’s examine you and see what it is?”

My eye test was strange. Imagine a frosty windscreen where someone has just scraped away sporadic areas,  well this is what my left eye is like. I could read the same line as last time, but only because I was moving my eye up and down and to the side so I could pear through the clearer area of the windscreen. Then my eye was dilated and as I was waiting for the drops to take effect I had the ultrasound done on my eye. It’s very easy, you just close your eye, jelly is placed on your eyelid and then the probe just rubs gently over your closed lid. Measurement, 7.5 by 1.5, my heart started beating, that’s not right, it was 7.5 by 1 last time? It can’t have grown, I’m in remission? She moved the probe to another position so that she could see if she could get the previous measurement, it’s quite a  difficult thing to do as there are no markers as to where you measured from before, finally she said I think it’s the same, there just appears to be fluid there. Is that bad? Is that the tumour active again. No she reassured me, it’s due to the radiation. She then asked the question which has been keeping me awake at night since I saw her “How often are you having your liver scanned?” Why? Have you seen something that worries you? She smiled, “no, its fine, but I would like to see you in a month.”

My now dilated eye was examined and the grey pigment was confirmed as white blood cells, macrophages, clearing away the debris, I didn’t care about the bloody macrophages any more, I was wondering if she would be contacting my jolly oncologist like she did last time she was worried. But she smiled, she wasn’t worried, it is just better to keep to the routine of January appointment and then four monthly. Yes that makes no sense to me either. Why can’t I be four monthly now if there is nothing to worry about? We said our goodbyes, wished each other a Merry Christmas and I stepped out onto the street to call my husband and repeat everything that was said to me. I needed his opinion as I wasn’t feeling great. I left him with “why did she ask about my liver? she knows how often I have it scanned. She had just said to me your liver scan was clear in October? Why did she say that?”  Difficult questions to a now also worried husband. “I don’t know” Was the only response as both of us tried to find a viable answer. ‘I’m sure everything will be ok’ Is never the right response, something we both know.

I think everyone with a cancer diagnosis must spend so much time second guessing what is going through someone else’s mind. Wasting so much energy, worrying and  wondering if there is actually  anything to worry about. I hopped on the tube and made my way home. The evening was spent liaising with the wonderful people on my Ocumeluk closed Facebook group. I have come to the conclusion, with their help, that there isn’t anything really concrete to worry about, if there was she would have been straight with me. I think it is all quite difficult as it is such a rare cancer. The consultants don’t have vast amounts of research or previous patients with similar symptoms to reassure themselves and us that this is par of the course. No one really knows what par of the course is with occular melanoma. So it is best to upturn every little stone along the way.  Someone said “it should offer you reassurance that they are keeping such a close ‘eye’ on you” and yes I’m hoping that that feeling of reassurance will soon take over from the feelings of worry.

In the meantime I will concentrate on all the lovely things Christmas has to offer, mulled wine, mince pies, lots of chocolate and of course very cold, very bubbly bubbles!

A lovely friend told me that because I mention bubbles all the time and once signed off from my blog with a ‘my name’s Ruth, Im 43..’ I sound like an alcoholic signing off from AA. I told her she could have bloody told me that before I published it, rather than days later, when the 3000! Yes 3000 people viewing it have already made their opinion on me!

Anyway, just to reassure everyone I have a dodgy eye, not a dodgy liver -yet!

Merry christmas to you all. See you in January!

Grey eye

So my blogs are getting less frequent and I hope this builds a frisson of excitement/curiosity about the next one, rather than just thoughts of ‘lazy cow, what’s she up to?’ Various reasons stop me writing, I would like to say a thrilling life of parties and glamour but reality is it’s  usually just sorting out stinking p.e kits, taking sickly hamsters to the vet, and cooking meals for a family of five where usually no one agrees on what they want for bloody dinner.

Anyway my last blog was incredibly short and as you have probably  realised from reading my previous blogs, I struggle to express my feelings at the time. I find it easier to explain in hindsight. Not to my family and friends but to everyone else. It’s all just too exhausting when I am feeling pretty shattered anyway. So here is a rather quick explanation of my feelings, post ‘MRI all clear’….pissed off! That’s it. I was furious and tired. How? Why? Well I can only explain it by comparing it to a running race, a long one. ( you see that’s the marathon runner coming out in me! I ran one, once, years ago but I will live off that achievement for years!)  You do all the training for say, a 10k, and it’s hard, the weather’s shit, you’re tired but you finally get there, everyone’s cheering you on, you can see the finish line, hear the happiness from the crowd, but as you step towards the finish line, it disappears and moves another 10k, the crowd is leaving, shouting ‘well done’, and I’m left saying “but the race isnt over? Yes I know I should be happy, but I really wanted to stop now. I wanted to hang my trainers up and come home with you all, cheering and happy and celebrating. I’ve got to keep going. I’m tired and I don’t want to f**king keep going! Can you hear that? I don’t want to race any more!” That was how I felt. The apprehension and sleepless nights that accompany me round scan time are never going to go away. Every six months it will be back and I felt mightily pissed off about it. I know I’m lucky to have the scans, I know I’m lucky it was caught early, I know I’m lucky it hasn’t spread. It’s just sometimes I don’t feel so lucky.

So anyway I have moved on and allowed those feelings to blend back into the background. I am back to normal, happy (well usually a bit moany) Ruth. Again over this time some people have amazed me with their ability to understand where I am coming from or what I am thinking without me saying anything. I met a friend who I haven’t known for very long, and don’t see very often, but she said “I read your blog and thought yes that’s shit you must feel so annoyed at the lack of control.” I hadn’t said anything to her, she had just read ‘I’m off to drink champagne’ but she could see through it, she thought about how she would feel and it made me think, there are really so many kind, thoughtful people out there. People that have the ability to really think about a situation and know what you are feeling when I sometimes don’t know how to express it myself. It’s the lack of control that pisses me off. I want the race to stop, I want to take my trainers off, but I can’t. The lack of control makes me furious! But to put that fury to good use I have entered a half marathon, if this cancer is going to make me keep going I will run and raise money as I go. My just giving page will be up and running soon (pardon the pun!) and f**k the never-ending 10k’s (MRI’S), I will have my other finish line to get to which I will cross and finish and which I can go home from and celebrate with everyone else.

The other eye news is I have a grey patch appear on my eye. see below.

See nothing is ever plain sailing? Anyway I’m not really worried about this, just a little bit. I e-mailed the photos to my consultant hoping for a “Yes, to be expected see you in January.” But instead got a “This is a common occurrence after brachytherapy but would like to see you at my emergency clinic to confirm.” Confirm what? That is is the common occurrence or what? What else could it be? Anyway this is where google becomes your friend. When I googled back at the beginning, when I was first diagnosed, I was terrified, as everything pointed to eye cancer. Now when I google grey eye, no cancer related stories appear – hooray. I’ve been happily googling away, reading about discolouration, strange pigmentation, a man with high cholesterol, but no horror stories. I’m off to see my consultant later in the week, so if in the mean time anyone finds a story that grey eye means your head is about to drop off, please pm me so I can at least be prepared.

And ending on an even lighter note I just thought I would share my children’s helpful thoughts on grey eye matter. My eldest daughter wondered if it would spread? “Will it spread all over the white of your eye? you’ll look sort of demonic!” Thanks!

Middle child helpfully told me that I could get my eyeball tattooed. “People do you know? It’s fine?” As if she bloody knew, and she’s the one that faints at the sight of blood.

Youngest, most troubled child just asked “will you be ok?”

“Yes poppet, mama will be just fine.”

“Good! because there’s a really good film coming out called ‘A monster calls’ (yes you guessed it the monster is the cancer!) and I want you to take me to see it!”

F**king great! I will keep you posted on grey eye and let you know how the hideous film is that I will be forced to watch with my gorgeous, thoughtful girls! Better pop a bottle in the fridge just to see me through. Cheers!

 

It’s not over

 

 

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I’m the red faced one at the back.

I wasn’t going to do another blog. I sort of felt that my eye being in remission was a happy ending so that I could just drift on with my life and not talk about it anymore.  I know that isn’t the case, I still have the dreaded MRI’s to contend with, but the remission gave me a ‘get out of jail free’ card. I could stop the blog, the curiosity of others and just pretend everything was fine now, thank you very much. But then I came back to the reason for starting it up. It was because I wanted to know from other cancer sufferers, specifically eye cancer sufferers, how they were.  What they felt and how they came through it or didn’t. It gave me comfort to know I wasn’t alone, reading someone else’s story. That’s why I started mine, so maybe someone could get some comfort from how I felt or how I’m dealing with it. So I feel I wouldn’t be doing my blog a justice if I didn’t continue with the truth that is living with a cancer diagnosis. I can’t just wave my magic wand and say ‘ta da’ it’s a fairy tale ending, because obviously it’s not.

So here goes. My MRI is on Monday. The results will be given to me next Thursday. The wait in between is hell. My good friends panic and anxiety have kindly come along to accompany me in the build up. They weren’t here last week so I started to feel that I was coping with this. But suddenly out of the blue my body goes into a fight or flight mode, the tension and nerves swarm up my throat, again making me gasp. It annoys me. I may have just been making a cup of tea or thinking about dinner, when this surge of adrenaline, panic, powers through my body, reminding me that something big is looming. The worst part is that I hurt my back about three weeks ago. I don’t know how, it just aches. It’s lower back pain and I’ve convinced myself it’s bone mets. I remember the painful massage on holiday and think was that a sign? Last week I wasn’t worried about it, this week knowing I have a scan coming up it’s playing over and over in my head like a broken record. So the sleepless nights have started again. Lying awake at night wondering if next week I’m going to be told all is well or I’ve moved to stage 4. Big breath.

Anyway in preparation for the fear I knew was coming, I put plans in place to deal with it. For me writing and  exercise helps, like running, walking up big hills etc. I don’t usually like exercise, I force myself to do it, but now I find when I run it’s a sort of meditation  that makes me feel alive. So that’s good because it’s all about feeling alive.  The plan I put in place to beat the fear was joining a fierce military fitness group in my local park, as you do. And bloody hell does it work! Last night I was awake watching a milk float (I didn’t know they were still around) come down our road at about three in the morning wondering whether I should google what spread to the spine feels like. This morning I was heaving logs around bushy park, doing press ups and sit ups badly amongst the deer poo, laughing with a friend as we tried to drag some enormous weights along the grass and generally enjoying myself. I felt like I’d taken a drug, I haven’t laughed so much in ages. I think it was hysteria rather than anything funny happening. But hysteria felt good. I am one of the most unfit people there but the buzz I get is invaluable to me at this trying time. I’ve been doing it for nearly four weeks now and every week the fit military bloke shouts well done to various numbers (we wear numbers on our shirts), today he shouted to me! “GOOD SPRINTING 46!”  I think I blushed, not in a weird I fancy him sort of way (I’m married to my gorgeous husband, who also reads my blog) but because I was embarrassed that it felt good to do well amongst the super fit types around me. Now if I’m really honest he shouted to 46 generally in my direction, I was actually too embarrassed to look down and check my number as I wanted to appear nonchalant like it’s no big deal, and there was another bloke pretty near me also doing a fast sprint, so quick in fact I couldn’t quite catch his number either, but I thought it was for me so that’s the main thing. I wanted to jump up and down on the spot shouting ” whoopee – f**king great sprinting 46!” but that wouldn’t have suited my nonchalant ‘yeah whatever I sprint in my sleep’ stance, so I didn’t.

But there you have it. I didn’t want to blog because I was scared. I didn’t want to tell people that I’m frightened of my results coming next week, but after a brutal pummelling in the park I feel brighter. Able to talk/write about it without it making me breathless. So lots of positive vibes next week. Please let me just have a lame weak back with no sinister growths. Let my liver be as unremarkable as it’s possible to be. And let me just pop a bottle of bubbly in the fridge as, as these military scout types would say, it’s always better to be prepared.

Cheers to a speedy healthy next week. xx

Remission

 

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.

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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

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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

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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