choroidal melenoma

The final countdown…..

~ justaneye73 ~ Leave a comment
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Two family members taking the easy option on a bike!

Sorry this is a long one!

Harley street check up with my eye oncologist on Monday was boringly normal! Hurrah! Tumour same size, what’s new? But dead as a dodo at present. I always worry slightly though, can they come back from the dead? Do they become active again? Anyway mine isn’t which is great.

Took me a while to write this as I had a million thoughts whizzing through my brain. The main one is too many friends are succumbing to this disease. When I started on this horrid path,  being told that 50% go onto stage 4,  I felt scared, for myself. I still am. But now also for my friends. Friends I have made along the way, How were we naive enough to not realise if it didn’t happen to me, it would happen to you? How did we not think as we shared are fears, that perhaps one of us would not be here to listen anymore?  Who can we text at night to whisper “I’m scared, are you?”  when one of us is no longer there?

So results day for so many lovely people wasn’t bringing the joyous news they deserve, hence my slow reaction in shouting “hooray I had a great hospital visit.” Instead I went for a run, a long fast one. I cried. Luckily the rain hitting my face disguised the tears. I felt angry. Why do we have to wait and see? Wait and see whether you’re in the A team or the B team. Do you win or lose? It’s not good enough. More money is needed for cancer research and cures are wanted, fast. People shouldn’t have to pay for the only treatment that could prolong their life because it is still only in the research stage. People shouldn’t have to rely on trials where they may be the one getting the placebo. It’s not fair I wanted to scream from my aching lungs as I heaved myself up Kingston hill.

I made a decision as I ran, that the marathon is the end for me. I’m stopping my blog and leaving the eye cancer group. I’m sorry if it appears weak and unsupportive. I have made wonderful friends and they will remain friends, but I don’t want to make anymore. I want to protect them and me. One of us is going to lose this battle and I can’t face anymore of it.

As my thought process moved on I thought of the good that has come of my cancer diagnosis and there is some.  It dawned on me how far we have come as a family.  It’s taken me a while to realise this, but my children are the lucky ones. At the start I had all sorts of awful thoughts, one of which was that I desperately wished I had never had children. I couldn’t bare to see them hurt or in pain through what I was experiencing.  I felt sorry for them, guilty for what I had put them through, angry that it was now part of their lives too. I was hurt and saddened to see worry etched across their faces. I was scared and so were they.

But they have experienced it and they are no longer scared. The ‘big C’ is no more. Now they hear the word cancer and they don’t equate it with death. As a family we are very lucky as we have a few cancer survivors. No one in our family has died of cancer and I don’t plan on being the first. So my kids now think of it a bit like running a marathon. It’s a pain, you have to go through all the treatment, it’s a bit of a long haul,  but they believe you will come through the other side. And that’s a good place to be, living with hope and belief and being without fear. They are the lucky ones.

Many adults have a fear of cancer.  But some peoples’ alarm always seemed a little irrational or weak to me. I think that was due to my nursing experience. I have been with people who have lost loved ones, seen children cry as parents were ripped suddenly and tragically from their lives. Through this I never became desensitised, but you do end up being a little matter of fact about it and not scared. It’s life. You hope it won’t happen to you, feel desperately sorry for the people it happened to, finish your shift and go home to have dinner with the family. You move on. You don’t forget them but you have to be able to compartmentalise your life otherwise you would never do the job. I learnt very early on that you can’t share with friends and loved ones  what you have experienced, as people are horrified and frightened. So you may just say “a young mum died today.” Rather than “a young mother with four small children has been dying on my ward for the past month. She has had surgery but it was unsuccessful. She is in excruciating pain but tries to hold it together when her children visit. She cries like a wounded animal at night as we desperately page the pain team so we can get it under control. We are trying to get her into a hospice to die so that she doesn’t have to die behind a curtain on this four bedded ward. We are waiting for a bed for her. Which means we are willing someone else to hurry up and die in the hospice so that she can have their bed. We are being offered counselling from the hospital as it is so distressing caring for her and we are rotating shifts so that no one is with her all of the time. Her husband is about 6ft 5 and looks like a tiny child.”  I remember this woman with absolute clarity and her four children. She never made it to the hospice. I was 23 years old trying to make sense of it all.

Why am I sharing this story? Because it is these things that shape us into who we are today. I look back and wonder if I helped her? Was I a good nurse? Did I care enough? I know I would be so much better now. It’s when you compare your younger self with the person you are today, the hurt and life experiences we have had over the years, that have shaped us into caring and sensitive people, who can show understanding and empathy. It  helps us to help others. And due to what my kids have experienced they have some of that, the empathy, the understanding, at their gorgeous tender ages, which will shape them into wonderful people as they travel through life. So they are the lucky ones.

My eldest daughter had a call recently from a friend asking her advise, as someone they knew had been diagnosed with cancer. “What do I say to her?” She pleaded with my daughter as my eldest nonchalantly munched through a bag of crisps wondering what words of wisdom she could  share. I asked her what she had said. She shrugged, “not a lot, cancer doesn’t mean you’re going to die. It’s fine.” I though at the time well a fat lot of help you were! But actually it was the perfect answer, said without drama, said without angst, said with such little fanfare that the ‘big C’ was brought down  to size. It lost its power. It was as if she was describing the weather. Now move on to something more interesting. And it was perfect. When I was first diagnosed with cancer peoples reactions scared and upset me. Seeing the fear in their eyes or them crying made me feel like I was already 12 feet under. If I had had someone like my daughter who had just shrugged and said “whatever” maybe it would have saved me months of anxiety! Now I’m not suggesting that’s the right response when someone close calls to say they have cancer, a shrug and a ‘whatever’ and then moving on to the KFC chicken crisis probably won’t cut it, but you get my drift?

On a final positive note, I was googling fuel to consume for long runs and somewhere in Runners world I found the perfect article!

Boost Cardio

Champagne: Raise a glass to your heart, say Reading University scientists. Their studies found that the polyphenols in bubbly reduce the loss of nitric oxide from the blood, improving circulation. Per week: 3 glasses

Only downsize  is obviously the 3 glasses per week!

Cheers and lots of love until next time.

Ruth xxx

 

9 down – 17.2 to go!

~ justaneye73 ~ 3 Comments

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I thought I’d better quickly write a blog as I’ve just gone live on my Virginmoneygiving page and I mentioned my blog on it. I thought if people think ‘oh I’ll give the blog a look’ and then see that I’m a lazy cow who hardly writes that often, they may equate that also to my running and decide not to sponsor me, as they can’t imagine me getting my fat lazy arse over the line. But no that’s not me. I can write and run and will be proving it as the months progress. Photo above is proof that I do get sweaty and run and I am now up to 9 miles! Feeling like those buns of steel are coming along nicely and I’ve lost nearly half a stone! The only unfortunate thing is that I must have actually put a fair bit of weight on over the summer as nothing actually feels loose yet, more that my jeans are no longer acting a s a tourniquet. But hey ho it’s all going in the right direction.

So my eye check up was yesterday and I’m feeling pretty relaxed as I’ve decided not to have the hideous injections.  I was calm and open minded as I went into my appointment,  as I had managed to quieten the voice in my head that was screaming “there’s no way you’re letting anyone poke a needle in your eye!” Luckily for me a couple of  weeks ago I felt my sight had improved. I was walking with a friend in Bushy park, which has lots of red deer, many which are rutting at the moment and although I couldn’t quite tell if the large stag looking in our direction was charging us or standing still, at least I could see it! (It was standing still.)

Anyway, at my eye check up my feelings were proved right as my eye test did show improvement, the fluid had again disappeared of its own accord. Now there is still a little bit left and I was offered the avastin injections for this, but with my eye and my position of my tumour, the ischaemia is spreading to remove all sight. The injections don’t help this, they help the oedema. My consultant thought maybe the injections could work for two years until the ischaemia took over, but it is like asking how long is a piece of string? She explained the side effects are pretty low, the main one being a risk of infection and some people see floaters. I have no problems with my eye at present and I can’t be bothered to go through the aggro of having injections monthly for such a short term benefit. I was secretly pleased she didn’t say “Oh Ruth we are looking at perfect vision for the next ten years!” Then I would have had to give them a try or admit I’m a chicken.

Anyway what proved somewhat amusing to my husband (not me) was she was very interested in what I have been doing differently recently? What could have caused this spontaneous improvement? I answered “nothing has changed.” whilst thinking, just lucky I guess. Helpful hubby on the other hand decided to put it all down to my running. “Yes” She agreed, “It may have had an effect.” This is where Mr J roared with laughter at his own humour “Oh Rufus, you were looking forward to taking off your trainers in April! Now you won’t be able to unless you want injections in your eye!” Ha bloody ha! I wanted to poke him in the eye with an injection. But now I have another motivation for running the marathon on those cold January training days, firstly raising money for Ocumeluk, secondly obtaining the body of a supermodel, thirdly keeping mentally sane and finally keeping the dreaded eye injection away! Sounds all good to me. They may not all be in the correct order, don’t judge me, I mean who would  prefer a body of a supermodel over mental stability?  But umm, I’ll just leave it in that order for now.

If you would like to sponsor me you can follow this link

http://www.virginmoneygiving.com/ruthjohnston73

Not actually sure that link works but if you google virginmoneygiving and search Ruth Johnston -running for eye cancer, it should pop up.

Thank you all. I’m off for a lovely curry and bubbles tonight, guilt free, as now I am such an amazing athlete I can eat what I please. Cheers!!

Ruth xxx

 

For David

~ justaneye73 ~ 6 Comments

 

Sometimes you don’t want to write. Not about cancer anyway, it’s crap and depressing and I don’t feel it is a huge part of my life anymore. Other than scan time when I’m petrified, I generally think of it as something that happened to me, not something that is ongoing.

Through the support network, Ocumeluk, I have got to know many truly inspirational people, people that I would choose as friends in real life and not just because cancer has thrown us together. I put those people in compartments, those diagnosed at the same time as me, those further down the line who have needed more treatment for recurrence in the eye, those who have needed their eye removed, those with liver mets, those who had plaque radiotherapy. In my head I have people to turn to for every eventuality. Someone who has been there, done that and bought the T-shirt.

My favourite people are the happy people, people who never seem to let it bother them (although we know of course it does). People who always want a laugh and can see the funny side in such sh*t times. That’s my type of person, as humour has definitely dragged me through my darkest days. This blog is for one of those people and who I felt was the same as me treatment wise. David was in my box of ‘treated and doing well.’ He always sent messages of encouragement when I felt scared and was just a bloody decent guy. He would sometimes share  my blog on his page which I found hugely complimentary.

When I came off social media for a while after christmas, he had posted the awful news that his scan had shown spread. So when I returned to FB I immediately regretted it. I was shocked and sad. I messaged him and he told me in brutal honestly what the consultant had told him. He was looking at a maximum of three years. His Facebook page was always full of pictures of him and his family, happy pictures with his wife, a man in love. What could I say? Humour bypassed me. I just replied ‘that’s sh*t.’ I hoped that within three years treatments would change and offer him a lifeline, I told him so. Tragically he never even had those three years. His wife informed us all on Friday night that he had passed away earlier in the week. An extremely kind soul gone.

The loss of anyone just creates that confusion of how and where? The slow realisation that no more message will come from him. He is no longer with us. And if that loss is felt so powerfully by those just close through a cancer group, imagine the immense loss felt by his family and friends? But I don’t want to be doom and gloom as I know he wasn’t. I have just struggled to feel lighthearted  while writing.

I thought back to Friday night when the notification came through that there was a post from his FB page, I hadn’t managed to open it in time before I clumsily dropped my phone down the loo! So I would just like him to know, wherever he is, that when people were offering condolences on Friday evening, I was fishing around a toilet at a Robbie Williams concert trying to retrieve my dropped  phone. I’m sure he would see the humour in this.

So I raise a glass to you my friend, wherever you are.  Wishing desperately that this blog wasn’t about you, wishing you were still in my box of ‘treated and doing well.’ I will miss your kind words, your crazy ramblings and your comments on our eye cancer group. I haven’t posted for a while on the group, but I know when I do I will wonder where your comment is, wonder why you haven’t messaged or replied and then I will remember,  that you have gone.

You will be missed. Be at peace.

Cheers my friend xxx

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!

I Choose Life

~ justaneye73 ~ 3 Comments

 

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Rosie keeping an eye on what I’m writing!

On a  cinema trip with the kids recently, a trailer came on for Trainspotting 2. I sat there feeling quite nostalgic, as the film and actors seem to have grown up with me. I was in my early twenties when the first film came out, I was a struggling single mum, trying to make ends meet and had probably made various poor choices in my life. Obviously nothing as bad as the trainspotting crew! And now here I was, twenty years later,  watching the trailer, thinking how the characters have all grown up and become sensible, like me. I am now happily married with three kids and a mortgage living a sensible, forty plus year olds life. Ewen Mcgregor’s voice than echoed around the theatre “I choose life.” he said, and I wanted to stand up and shout “That’s like me too Ewen. I choose life.” The only difference being will life choose me?

That’s one of the things that I find difficult to cope with, when I ask myself, will I still be around in a few years? When the kids laugh and make comments about what they will all be like when they’re older, what jobs they’ll have, how many children etc. I smile and laugh too, but have that fleeting dark cloud that crosses my thoughts that says “Please let me be there. Please let me at their weddings and meet my grandchildren. Please let me see what beautiful strong women they will grow up to be because I desperately want life too.” So as I’ve said before, I do everything in my power not to think about it. I keep busy with things and people that make me smile and laugh. I don’t want to spend time worrying about it. I want to spend my time having fun. It doesn’t always pan out how you want it to though.

Recently I had a little sabbatical from social media, but ended up missing family and friends and mainly my eye cancer support group, so was back on within a month. One month. Within that month someone very to dear to lots of people in the eye cancer UK community had died and various others have had bad results back form the dreaded liver MRI. One person I consider a kind friend was one of them. I had thought I’d be catching up with happy memories and stories but was instead brought to a brutal halt that cancer is still very much part of my life. It had got him, would it get me? I wanted to scream. Why? He chooses life too and nobody seems to be listening! Not only is it bad enough to have to play Russian Roulette every six months, waiting for it to spread, but many people than have to fund the treatment themselves. Why? Because the cancer is rare, it’s terminal, so where would you put the funding? To prolong a middle aged woman’s life for a year or to pay for a lung transplant for a young child. It’s brutal, but that’s it. We know we aren’t top of the funding list however loud we scream “I choose life!!” So if anyone is ever looking for a charity to support, Ocumeluk is one that supports eye cancer and us.

And just a little aside to prove my point that ignorance is bliss, my lovely, almost 15 year old cat Rosie isn’t very well. She arrived when my 21 year old daughter was seven. She saw the arrival of the next two girls, who were often heavy handed with her, as only toddlers can be. Many a time I had to tell them to not carry her down the stairs in a head lock as poor Rosie couldn’t breathe and not to body slam her.  She never scratched or bit them. She then saw the arrival of a very large bouncy labradoodle, who she made quite clear too, she was boss, and managed three house moves without ever getting lost. We have now been told she’s on limited time and it’s just palliative care. We are all sad and devastated. Well all, apart from Rosie. She doesn’t know! She is ignorant to it and is more than happy living off fresh fish and chicken and being given fresh catnip daily and as many laps to sit on as she wants. Middle child told me that “it’s lovely as she can live the rest of her life like a princess.” And she can. An ignorant princess, which is the way to go. So I’m off to pop a bottle in the fridge so we can be ignorant princesses together.

Cheers xx

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!

I’m not ‘brown bread’

~ justaneye73 ~ 12 Comments

 

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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!

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