Avastin

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

 

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

A Bit off colour

~ justaneye73 ~ 1 Comment

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Feeling a little deflated and orange as I write this. I had a fluorescein angiography today, where they inject a dye into your vein so that they can see the blood supply in your eye. The dye gives you a ‘celebrity tan,’ I was told, which could of course be any colour from and old leather bag to a sickly jaundice. Your urine also turns yellow. Not just a normal yellow colour but fluorescent yellow. In fact if I put it in a straw I could happily wave it around a dance floor and it would glow in the dark and fit right in with the kids day glow sticks. I might give it to them as a cheap version of a glowing necklace later and see if they notice? “Don’t be alarmed.” I was told. There is also some adrenaline at hand as  1 in 1000 will have an anaphylactic shock and need adrenaline. Bloody hell, can I just go home now?

If my blood supply was good and sight loss was due to the fluid, than Avastin injections could prevent further deterioration of my sight. Unfortunately my sight loss is due to ischaemia rather than fluid so Avastin injections won’t work. Obviously the plus side is I don’t have to go through having injections into my eye and making the repetitive monthly journey to get them. The down side is that there is nothing that can be done to restore the sight or prevent further deterioration. This is all said by the consultant  with good humour and smiles so that you think it’s the best news you’ve heard all week, but my mind was ticking away as I was grinning like a nodding dog. I have realised quite quickly that any questions need to be asked there and then, as once you walk out of that office you need to wait for your next appointment and it’s incredibly annoying if you want further clarification. So I asked the questions that were on my mind and the responses were that it was ischaemia, which is death of the blood supply to a patch, mine was confirmed at between 12 and 1 o’clock. It was quite early to get it. It usually appears from 3 years. Just because it is early it doesn’t mean that it will progress faster, but it will progress. I’m looking at about another 2 years of sight in that eye. Pile of sh*t hey?!

As I wrote that last sentence I laughed as I remembered a member on my eye cancer group who had had an eye removed due to a large tumour. He had been given a choice as to whether to treat the tumour or go straight for removal. His response was “well if you had a bag of sh*t you wouldn’t chuck the sh*t and keep the bag would you?” Fair point well made young man.

So as I have also come to expect, she would like to see me again in a month. This is where I silently scream. I spoke to my husband on the train on the way home as I had gone to this appointment on my own. He said he felt sad for me. I feel a little sad too. It will pass, in a day or two I will think how silly to feel down about it as it really doesn’t matter, but over the past year I have learned that it is important to acknowledge these feelings. It doesn’t take me long to bounce back. I have a very important 70th party to attend this weekend so with the prospect of seeing lovely family and having lots of glasses of champagne I can’t stay glum for long. Anyway in my opinion two eyes are totally overrated. It’s all about mono vision now don’t you know?!