Okay not such a nice topic but one that is important. This page will send shivers up your spine so please be careful reading it. I do not really want to open a new procedures section on the blog unless things go pear shape and therefore I will keep this in the general area.
As you can see from my blog I was diagnosed with Stage 4b Hodgkins Lymphoma in Feb 2014 – The attack included multiple Lymph Node sites, my Liver, my right lung, my throat and my Right eye. The main attack before been diagnosed was highlighted by the swelling to my right neck and the sudden loss of sight in my right eye. The attack against my eye was extremely rare for HLD. Up to 2014 I had great vision in both eyes but the initial attack created massive black spots in my right eye – to the point where I had lost over 80% vision in my right eye. In basic terms I had an Eye Stroke.
What is an Eye Stroke?
During an eye stroke, the retina’s veins or arteries stop working as they should. They become blocked by a clot or a narrowing of the blood vessel.
Much like a cerebral stroke, where blood to the brain is reduced or cut off, the retinas in the eye lose their blood supply. Blood and fluid may spill out into the retina and cause swelling. Both the retinas and a person’s eyesight can rapidly become damaged.
All caused by my old friend Mr Hodgkins
Over the following year my Consultant Ophthalmologist covered quiet a lot of intervention including basic steroid eye drops, aspirin, laser intervention and Lucentis treatment (I will explain Lucentis in a little while) – the results were fantastic. I regained over 90% vision back in my right eye and basically I ware glasses reading to help. I was lucky and my consultant to this day reckons that in 2014 I was in a situation that could have resulted in blindness. Looking at photos of the back of my eye looked like the craters on the moon, massive eruptions where it should have been smooth. I am still on 75mgs of Aspirin a day to help thin out my blood to prevent further strokes.
So an eye stroke is really where blood leaks out into the eye. This appears as black spots in vision. Sometimes these spots simply ware away over a few days but sometimes they do not and the specialist have to take action. Best treatment is Lucentis. Lucentis is give by injection. Here comes the shiver up the spine part… 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 procedure done in 2014 and out of every examination, procedure, treatment, PET scan, NTAP, operations and biopsies I still to this day rank the eye injection as the most difficult and disliked procedure ever. The procedure itself is very fast, a blink of an eye, excuse the expression in this case but it is basically over in a second. The mental build up to allowing someone to basically stick a needle in your eye is out there with the “never ever” list. However if your going blind the never ever list becomes a “please do it” list. And It worked for me. I went from massive vision loss in my right eye to then 75% improvement. Wouldn’t you ?
My Ophthalmologist is genuinely an absolute gentleman. I trust him 100%. He knows exactly how much I hated the procedure.
So why am I writing about this now nearly 5 years later ?
Less than two weeks ago I was driving home, quiet late and was turning into my driveway when I suddenly got a massive headache and my right eye dropped to nearly zero vision, just blackness. About 5 minutes later I regained some vision but I had a serious number of “black floaters”. By the next day it was clearing but the headaches started again. I don’t really suffer much from headaches so I knew something was wrong. Got an urgent appointment to see the specialist.
Ophthalmologis Meeting Wednesday 19th of June.
I have regular checkups on my eyes just like I have for Lymphoma but when I called him with a report on what happened he made an appointment to see him the next day. He examined both my eyes and took a deep breath. I knew this was bad. The next words from him were “You have had another eye stroke Ian, in the right eye again but the left eye is clear”. Memories of the first attack in 2014 raced into my mind and the specialist must have spotted this. He explained that he did not consider this as a Lymphoma attack.
So he sat back and started to consider options, or so I thought. In reality he was making time to prepare me for how he was going to make this better. He explained that one of the tiny veins in the back of my eye had for some unexplained reason leaked. The blood was now clotted in the eye and creating black spots. The best solution: An injection of Lucentis into the eye. OMG… not again. My expression must have said it all. He apologized and went on to explain that the tremendous and unexpected success of the injection in 2014 showed how successful this injection was. To be honest I don’t remember what else he said as my mind was now racing. My most disliked procedure, one I felt I would never have to undergo again was now been scheduled for Friday 28th of June, he wanted to give me a week to rest up as much as possible and see if mother nature could resolve the problem, but he added that it was 90% unlikely and that the procedure would take place.
Just as a side not this drug cost in Ireland about €1,500 per injection, excluding hospital or specialist cost. So I had to contact the VHI (My private health insurers) to get approval. I got it approved and have to pay an excess of €125 (these cost build up, this year alone I have paid out on consultants, test and excess over €1800 bringing my personal cost to just under €22,500 since diagnosed in 2014 none of which is covered by my health insurance. VHI have paid out over 1/4 million € – If there is one thing for sure battling Cancer is not cheap).
Friday 28th of June 2019.
The procedure started at 10am. I have spent all week trying not to think about today. The only positive thing for me is that I know what to expect. Back in 2014 the nurses could hardly keep my eyes from blinking when trying to apply drops. My eyes are extremely sensitive. But over the years I have gotten used to eye drops, so now I can apply drops and not blink nearly as much. But the thoughts of another needle into my eye makes me cringe big time. I had considered placing up a video of how the procedure is done but then I decided not to be that evil on my readers. The procedure was going ahead. Fuck fuck fuck fuck and fuck it.. Anita who uses contact lens and doesn’t hesitate or mind eye drops went very quiet. Did I mention fuck….. into the procedures room and I am placed on a flat hospital bed. The nurses commenced applying an anesthetic eye drop really loads of them. I can handle this a lot better than 4 years ago because I have become accustomed to drops. Just when I felt I had the upper hand the consultant placed an eyelid opener on my right eye to keep me from blinking FUCK forgot about that part… The consultant places his hand on my shoulder and said “we are doing this slightly different, I’m giving you 3 injections, two are anesthetic.” OMG yes 3 not one.. “stare to the left and pick a point on the ceiling”fuck fuck fuck… I can see the needle and feel a pinch in my eye the first anesthetic, rapidly followed by the second. More of a sting than pinch. He explained that he needed to give the anesthetic a few minutes to work, that he intended going deep into the eye with the Lucentis. And then it starts, deep breath, he injects and plunges, suddenly my vision turned from black spots to what looked like fluid streaming into my eye. Over and done. He placed a number of antibiotic drops into my eye and then covered it with a patch. I have to keep the patch on for 4 days. He then handed me a prescription for eye drop antibiotics which I have to apply every 4 hours for 4 days. Strictly no driving till Tuesday.
This procedure for me is not about pain. On a scale of 1 to 10 (10 been the highest level of pain) I would say a 2, it’s about the mental ability to ignore what had or would be done. but this procedure freaks me out. In real terms it was not as bad as I remember, maybe I was better prepared and knew what to expect BUT still rank it as the most difficult.
Of course the immediate aftermath of the procedure includes headaches, black spots in the lower vision like marbles ( caused by the puncture of 3 needles) and itchiness that you can’t scratch. Rest up, keep the eye closed as much as possible. Couple of paracetamols and more antibiotic eye drops. With my immune markers at zero they have doubled the antibiotics
Next will be the consultants report to my oncologist which will be followed by blood test, blood screening and most likely CT or PET scans.
I make no apologies for the use of the word fuck in this blog.