fear of dying

The Sniper

~ justaneye73 ~ Leave a comment
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Well worn muddy trainers!

It’s been over 2 months since my last blog. I hadn’t realise the time slip away. There has been no reason other than I haven’t thought about it. Which equates to I haven’t thought about my cancer, which is a good thing.  I say ‘my’ cancer because I have been thinking about others peoples’ cancer. Other people with eye cancer that we have lost recently to this dreadful disease. Friends who haven’t had good news from scan results and are waiting for what comes next. More treatment hopefully. Treatments that work and can conquer the awful liver mets. Liver mets, the thing that gives us all sleepless nights.

It still shocks me how relentless and cruel cancer is. Getting bad results just before Christmas, or on birthdays or when you have to attend a child’s parents evening never seems right. But of course cancer doesn’t hold your diary and work out the best time to deliver devastating news. Is there ever a best time?  “Oh you’re blowing up balloons for your daughters birthday party? Sorry to disturb you, but you have something suspicious on your liver. Enjoy the cake and we’ll discuss options next week.” Relentless. Cruel. So my thoughts have been with them. Friends who are waiting, hoping for a cure, and slowly as you think of them, the fear creeps in. You can’t help it or stop it. So I keep my head down and keep busy.  Don’t write a blog, don’t draw attention to yourself, cancer may not notice me and move on to someone else.  I think of ocular melanoma as a sniper,  slowly picking us off  with what seems like no rhyme or reason. People with the same size tumours, same treatments,  have very different outcomes. I try and make sense as to why that person has died and I’m still here, but at the moment there is no sense to it. I hope research eventually explains the why and can give us treatments, so my friends don’t have to lose hope. I’m willing on these amazing immunotherapies so that they can come and quash the sniper, before he strikes again.

Now as most of you know, I am running the London marathon in April for Ocumeluk, the fantastic charity that helps us rare, unique eye cancer bunch with everything from practical appointment things to the more heavy emotional stuff. So just a little update on how it’s all going. Very well thank you!!  I’m shocked. My long runs are now 12 miles!! I can’t believe it. And I haven’t suffered a single blister yet. When I first started training I was running just over 3 miles and I just wanted to cross the finish line, but naturally as you run and improve, you start setting yourself little goals. I have two. The first is to beat my last marathon time of 4 hours 36 minutes. Hilariously to do this I thought the easiest way to achieve this would be to tell my husband and kids that I won’t be stopping to ‘chat’ with them when they come and support me. I haven’t broached that with the kids yet as my youngest was asking if she could make a banner and often cycles with me while I run. Could I pretend not to see them or not hear them when they call? Ha Ha! Get them back for calling me deaf and blind! Yes I know I can’t that would be mean,  I won’t have any choice but to stop, damm that just means I am going to have to just train harder!

Anyway, my second  goal is to run Richmond park  in under an hour. Now those that know Richmond park will know it has some ghastly hills. When I first did it in September I crawled up the hills and finished in 1 hour 15 minutes. Chuffed to bits, red in the face, looking like I was having a heart attack, but I did it. Yesterday my time was 1 hour 1 minute and 20 seconds! Woohoo!!

So I’m thrilled with how it’s all going. But just to clarify that I haven’t turned into a boring athlete who checks strava every few minutes like some people (Mr J!!). I’m still not a natural runner. I don’t look forward to my runs, I look forward to the end of my runs when I can eat and drink what I please.  A friend asked me today with all the training I’m now doing have I stopped drinking? What?! Of course not! I have eye cancer. Not insanity!!

So cheers to many more ‘end’ of runs. Fingers crossed for many successful treatments on the horizon for our friends and if anyone would like to sponsor me just follow the link below.

Ruth xxx

https://uk.virginmoneygiving.com/ruthjohnston73

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

 

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.

Stay Positive! : )

~ justaneye73 ~ Leave a comment

 

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

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

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

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

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

A Peaceful Day for a Sail?

~ justaneye73 ~ Leave a comment

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

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

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

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

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

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

I think I might book a skiing holiday next!

Gory eye

~ justaneye73 ~ Leave a comment

My eye a few days post op. It was worse for everyone else. I didn’t have to look at it unless I looked in a mirror. So I didn’t

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Hilariously I’m a nurse and my husband is the most squeamish man you could meet, but with me being unable to look and just wanting to cry he took over drops duty. He took over the running of the house, the school runs, the homework, dinner. Phoning and making my cardiologist appointment, arranging my full body CT and my post surgical follow-up. Plus keeping his job going and the money coming in to pay the bills. He has no medical training at all but learnt very quickly how to counteract any concerns and worries I fired at him constantly.  We survived by being practical. And by not spending a single moment alone together. We couldn’t give each other any space for our fears to come tumbling out. We needed to fill the day with the ‘normal’ stuff. And the kids kept things normal as only children can. They didn’t know what emotional turmoil I was in so had no sympathy for me being tired or needing time out. They bullied me into a normal existence and that was how we survived. I remember someone saying that my husband and I should go out for a meal together. Just the two of us so we could talk. They didn’t understand that this is what we didn’t want to do. Talk. It was too painful. I couldn’t sit opposite him in a restaurant and look at the fear in his face and think about what I could potentially lose. So we didn’t.

Cardiology was next on our list of practical jobs to do. The cardiologist was a wonderful man who alleviated my fears straight away. He listened to my marathon feat and gave it the huge significance it deserved. He even asked my time! Four and a half hours if you’re interested. Very difficult to do with a heart condition,  I would have experienced symptoms, palpitations that lasted a few minutes. Yes I have an abnormal heart beat and yes everyone that listens to my heart over the years always asks if I have a murmur, but it’s just me. A little anomaly that about 1:400 have and as long as there are no symptoms it is of no concern. Hurrah! First bit of good news in a long while. “Plus” he said, “you have bigger fish to fry.” Yes let’s not forget the cancer. I was to have an ECHO (ultrasound of the heart) and was taped up to a 24 hour ECG. If the results were all normal I wouldn’t have to see him again. And I’m pleased to say I never have.

Then came the full body CT. I would quite happily trade  my MRI’s that I must have every six months for the CT. It is a calm and serene experience. There is no noisy banging going on. I actually could have fallen asleep if my stupid brain wasn’t in overdrive worrying about what it could see. My thigh had been aching for about ten days. These was bone mets I had convinced myself. Welcome to the world of life post diagnosis, where every headache is a brain tumour, every cough is lung cancer, every sore throat is…you get the picture. However reasonable you try to be it slowly creeps into your subconscious. Just lurking there. Waiting for you to close your eyes and drift off into a peaceful slumber so that the fear and shock is worse when it grabs you and shakes you awake at night. There is no one else awake at night so you can’t whisper “I think it’s spread, I think I’m dying” And would you want to say that to your loved one anyway? As he is also thinking “I’m scared it’s spread. I’m scared you’re dying.” So you lie awake, frightened, waiting for morning to come and relieve you with slightly more reasonable thoughts.

I was waiting for my CT results. I had a few more days to go. The days are endless when you are waiting. I wanted to fast forward time but would then start to think if I don’t have much time I want it to travel at the pace of a snail. An e-mail arrived from my jolly oncologist, the liver mets guy, ‘just to inform you the pet scan results are normal. see you in six months.’ I stood in my kitchen and cried. Suddenly these little bits of good news seemed to be coming my way. Luck appeared to be on my side. Maybe through all of this I would be O.K. It was these little bits of hope that slowly repaired the damage and trauma I had been through. I just needed them to keep coming.