stay positive

Just an eye

~ justaneye73 ~ 2 Comments

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Okay it’s taken me a week to gather my thoughts, and I don’t feel they are fully gathered yet so if anybody reading this can help, please do.  Firstly, if I asked anyone would they do anything to save their sight I know what the answer would be. But this is the question that is exhausting me and suddenly isn’t as clear cut.

Last Monday I went for my regular eye check up. I knew my sight had got worse but I felt anxious as I didn’t really want to know how bad it had got. I didn’t want it confirmed. I went in to see the nurse first for an eye test and as she handed me the little glasses I felt sick. She asked me to cover my good eye and see how many of the letters I could read. I took a deep breath and felt like crying. I didn’t want to know. In May, my bad eye could see about the fourth line down, now as I put the strange glasses on I could see the big fat capital ‘A’ at the top of the chart and one other letter underneath. There was a moment of confusion as the nurse was checking which ‘A’ it was I could see, hoping it was one a few lines down and then a sobering moment when myself, my husband and the nurse noted that it had got that bad. She handed me glasses with lots of holes in to see if this would improve matters, this only made it worse as the big fat ‘A’ disappeared from view. I tried not to cry. What does it matter? It’s just an eye? I’m still here?

I changed the glasses over to check on my good eye and I raced to the very bottom of the chart to reel off what I could see, only getting two of the tiniest letters wrong. Thank goodness that eye is so good was my thought.

Waiting to see my consultant I felt sick. Apprehensive. I wasn’t sure why as surely there was nothing to worry about. She called me in and appeared sympathetic that my sight had deteriorated. She seemed surprised that it had happened so fast, since May she noted. I actually knew it had happened since July so even quicker. My eye was dilated and the eye test began. This was where my anxiety reached boiling point again. I think after a cancer diagnosis that fear that is etched and scarred on your memory, the nausea, the sweating pounding heart, the inability to eat, sleep or function is always so close to the surface. One wrong comment from someone, a look, a feeling, has you spiralling back into its clutches and that was where I was heading again, as she paused and measured, paused and measured. “Look to the left.” Pause. “Now look to the right.” Pause. “Up a little bit.” Pause. While all this is going on I’m thinking “Oh F**k I’m going to vomit.” My husband told me after that he was scrabbling for his phone googling ‘oedema in the eye- what it means?’ The couple of minutes waiting to hear what she has seen, is vile.

“Yes I can see why your sight has got worse, there is a build up of fluid. Remember you had it before and it cleared up spontaneously? Yes so it’s come back, but the tumour is looking good….” And breathe. Sod the fluid! The tumour is looking good. And try not to cry.  She continued by telling me that the tumour was flat and remains in remission but she feels it may be worth re-investigating whether the injection in the eyeball would help my sight. She explained that Avastin injections could help clear up the fluid so could restore some of my lost sight. What needed to be checked was how far the dreaded ischaemia has travelled as Avastin doesn’t help with this.  So I was sent for photos and imaging and will be back to see her in a few weeks to see if the injections are worth doing and if I decide to have them.  Decide to have them? This is the crazy thought going through my head that I’m trying to work out.

Now I know I’m a chicken and don’t like the idea of an injection monthly, but my issue is that I am going to lose the sight in that eye anyway. That is fact. The radioactive plaque was placed too close to my optic nerve to save it, so how long can Avastin hold off the inevitable? If it’s only for a year, do I want to have an injection in my eye for that? And that is three injections over three months, I’m not sure how often they are repeated.  If it could restore the sight for longer then yes of course it would be worth it. Then I started reading about the side effects. I asked people on the eye cancer group what side effects they had had, the replies varied from ‘Avastin is a miracle it restored my sight’ to others who said it caused dry gritty eyes and had no benefit. It can cause redness in the eye, which of course will fade over time, but it is there as an obvious reminder that I had eye cancer. Something my youngest sensitive daughter does not want to be reminded of. She cried for about three weeks after I got the marathon place, as for her this was proof I was getting better. People that are ill and have cancer can’t run the marathon, “my mum can because she’s better,” were her thoughts. Travelling for monthly hospital appointments and coming back with an irritable red eye for a few days is not something I want if the outcome isn’t worth it. There was also a risk of cataracts. I’m 43! I don’t want cataracts. Now I know all the risks listed aren’t necessarily what people will experience. The risk of cataracts may be very low and these are things I need to discuss with my consultant, although I’m  sure even she won’t know whether or not the injection will work and what side effects, if any I will experience. She will probably suggest I just give them a go. I feel a little like I should and am veering in that direction but I’m not completely there yet.

The fear that the Monday appointment brought with it, reminded me that this is how I will feel again very soon as my MRI approaches and I’m at the 2 1/2 year point.  I keep hearing people say they had mets discovered at 2 years, 2 1/2 years, 3 years and I want to run away. I stare at them thinking maybe there was a sign that they would get it, a sign I don’t have. How are they different to me or are we the same?  I went for a run on the Tuesday and cried a little as I ran. I felt pleased I could run as it helps me to calm down and I needed to, my thoughts were all over the place. I felt stupid for feeling upset when there are so many people worse off than me. It hasn’t gone to my liver, it is just an eye. But I think we all have down days when things feel bad, days when I want to scream that I don’t want this f**ker in my life anymore. Scream that I want to be able to look at my calendar and not think about scans and what ifs? Guilty for feeling down about it. Surely I should feel positive all of the time? I also felt scared about losing the sight in my other eye. I ran with my 80 year old dad and felt jealous that he is so healthy. Will I be alive at 80 and if so will I be registered blind? It’s a hideous sobering thought thinking about it all and I have desperately been trying not to. People say you can’t worry about the future as you don’t know what’s round the corner and I know it’s true, but I think we all have times where those thoughts take over.

So If I asked you now would you do anything to save your sight would your answer be the same? If anyone has a crystal ball and can tell me what to do I would be most grateful. Failing that I might just flip a coin.

Until next time take care.

Cheers

Ruth xxxx

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!