Eyes Again…Sept 2019

Placed up a blog in June called Eyes https://hlai.blog/2019/06/28/eyes/ – it got a lot of views and raised eyebrows

Which in fairness seemed to have “upset” a number of people. I really don’t care who it upsets as I am the person having to undergo the operations & procedures. So to those people please be prepared to be “upset” again !

I had a number of eye strokes in late August and early Sept. The worst hit was on the 16th of Sept and created a haze or fog over the vision out of my right eye. This was a bad one, where most begin with a headache followed by an attack this one started with an attack and progressed to a massive headache at one point I had no vision out of the right eye. So I called the Ophthalmic consultant on the 17th and he called me straight in to see him. Maybe I shouldn’t go Oh Fuck like I did in the Eye’s blog but then again Oh Fuck.

My Ophthalmic consultant is a really nice guy and I have a lot of time for him, I know the Oncology team saved my life more than once but this guy saved me from going blind in one eye 4 years ago. The initial Lymphoma attack had taken 80% of my right vision, this man restored my vision to almost pre attack level, the attacks between Aug and Sept of this year have now taken 70%, that’s a lot of vision gone. And what I can see through my right eye is like a mist or fog. Bright lights (Nearly always reminds me of Gremlins) are painful and I have to avoid night driving for about 6 weeks, between 2015 and 2017 I was not allowed to drive at night as there are a lot of idiots driving car’s that forget to switch off their beams, strong beams of light hitting my eye can really hurt and the lights can temporarily cause vision loss, I live 10 minutes from the motorway so about 8 miles of country roads – high chance of meetings cars with beams on full . I’m lucky to be allowed to drive at the moment so the restriction is not an issue

So the consultant is convinced that this is not a sign of another Lymphoma attack or reoccurrence and the team will be trying to establish what the fuck is causing the strokes – did I just say “what the fuck” well I did warn you all in advance.. They are going To research the possibility that my blood is clotting first and then they have a list of blood test BUT the immediate issue is more to do with the loss of vision and how to regain it. Bet you guessed because I did on Monday. Another operation more Lucentis – Lucentis is give by injection the injection is directly into the eye. You must be awake for this particular procedure but they do place local anesthetic drops into your eye. But your 100% awake . I had this first in 2014 and the results were amazing, single needle in the eye . They tried again in June 2019 following an eye stroke in mid June with a slight difference of 3 needles in the eye, that took a lot but I was only told it was 3 about a minute before the injections so been brave I didn’t have the chance to fucking run. But I got this over and done with.

So I am sitting at the meeting on Tuesday 17th Sept 2019 now fully expecting to be told that he would try another 3 – but no such luck. As he is explaining the fact that I had suffered multiple stokes the previous day I noticed that he is writing a prescription so without thinking I asked him what the prescription was for – Valium !!! WTF so having an Anita moment I asked “Why Valium?” I said to him that I felt I handled the last operation well, he said “Yes you done much better than I imagined” so I answered him with “Then why the Valium if I done so well the last time” answer “Your going to need it” and he then explained why. Basically he planes to inject the eye in seven different directions… oh my sweet fucking life. Yes that’s 7 injections- hence the Valium. I’m writing this 10 days before the operation and I could do with a Valium even now.

For those who are following the blog that are currently undergoing treatment or just diagnosed it is extremely rare for a lymphoma victim to suffer eye strokes, I think I was the first one in 15 years to have this condition and to the best of my knowledge there have been none over the past 5 years. So don’t get alarmed by this please. The current situation stems back to the original attack. Blood Cancer can confuses the immune system when it attacks, the immune defense is to attack any unrecognized cell and with stage 4 blood cancer the cells can be everywhere, this includes the eye. So the immune system sends white blood cells to attack what it recognizes as a dangerous cell, in my case the cancer cells had attacked the Lymph nodes to the right of my neck and had succeeded to continue towards the right side of my brain, on their way they got stopped by my immune system and all hell broke loose – this ended up in my right eye and basically the immune system shut down the flow of blood to the tiny veins to the back of the eye and this caused the entire eye to rupture. The x-rays looked like missile explosions and craters like on the moon. I find it remarkable on how our bodies work, nature at its best..

So tonight is the 26th Sept, the night before the planned operation. Basically my right eye has gone from bad to worse. Zero focus now and everything through the eye is a pure mist, just about make out shapes. Nearly ditched the car on Tuesday as I was working late and nightfall was early, met a car with their beams on and got a sharp pain straight to my brain- gremlin time again “bright lights” nearly cost me my car. But even my sleeping tablets are not helping-can’t see the sheep to count the feckers so decided to update the blog. Basically I’m glad he prescribed Valium for pre operation. But with the issues I’ve had this week I’m glad he is going to do this, never thought I’d say that but there you go

The Operation September 27th 2019

Took the Valium an hour before going and it kicked in fast. And am I glad I took it. I have been deeply troubled with the thoughts of this procedure for the past week. I spent every waking minute last weekend renovating parts of our house. I went flat out in work this week to distract the thoughts of today. But this past week has been difficult as I have completely lost focus in the eye.

No waiting round today. My immune system is in trouble so they took me in fast. I explain in detail the past 24 hours and they have to X-ray my eye first. The specialist then calls an oncologist but decides to go ahead with the procedure. Gallons of eye drop anaesthetic used, I’m placed on a hospital bed and on goes the eye lid clamp (to keep me from blinking). He decides on only doing 5 injections and like that it’s over and done or so I thought.

Something is very wrong here. The Ophthalmic asked me to wait. He had seen something that he wasn’t happy with and called Oncologist I have to meet the team right now. They are admitting me today, actually straight in. I have to have CT-NTAP & MRI brain scan. Multiple blood test and much more. This feels like Feb 2014 all over again.

As this was expected to be only about my eye I am going to close off this page but we will update on WordPress & Facebook over the weekend.