Hi Rob,

thanks for your reply. I'm a bit surprised you are having yearly checks already though as I was advised it should be every 6 months for the first 5 years ?
cheers and continued good luck 

Bob

I am on day 7 after having the markers. Eyes still very sticky in the morning and can't wait to put more eye drops in after about 3 and a half hours! Paracetomol every 4 hrs.

When does it ease? 

I have my first liver check in St Barts in London next week. I have been to London 5 times since December and as I live in Bournemouth it's a bit waring. Due to go to Liverpool for simulation on 3rd Feb then 23rd Feb. Its costing a lot of money, what with train fares, fuel and meals etc! 

Hi Mazzer.

It does seem to take a while to improve, I suppose it is because, if you are like me you are living day by day until it feels good again. I needed to get back to work.

Have pasted the notes from day 5 that I kept after my op as I was very unsure how it should be. It will always be different I suppose for everyone but they might help.

Day 5 post op. Swelling definitely reduced, Eyelids not as matted together this morning, irritation under the eyelids is still there but greatly reduced, eye opening about 70%, eyeball looks quite bloodshot as it can be seen better now, would look good on a Dracula film. Eye feels like it is focusing but the film or tears that seems to be in the eye causes it to still be blurred so cannot clear the eye, but it feels better because it is more open. I can definitely feel my eye more today but that also makes me more aware it is sore.

Day 6 post op. Definite sore eye, bloodshot, can look up & down ok but not sideways without discomfort. still matted up in the morning but it does seem that I can keep the eye open for longer and it isn't tearing up it just feels swollen inside. the only obvious swelling on the outside is on the top lid by my nose but I still cannot open the eye fully. No pain killers for my eye just for headache across the front of my forehead, think it comes from trying to focus my eye. Find it useful to attach an eye patch on the front of my glasses with elastic, it rests my eye from trying to focus even though it is open.

Day 7 post op. pretty much same as day 6 but not as many painkillers for headache today. Will try and leave them off tomorrow. Have also tried driving as surgeon said it would be ok, not really a problem, I generally close my bad eye when on normal roads so it doesn't annoy me, only need to open it for manoeuvring when I can see enough, so ok. Noticed, as I can now pull back the eyelids the small red/ brown marks the surgeon said would be there on my eyeball under the top and bottom lids, they seem to be attached to my eye probably some kind of scabs as they move with my eye. Interestingly that is where the discomfort of the grit feeling in my eye is coming from which makes more sense. It still feels that my eye is swollen or too big in the socket

Day 8 post op. not matted up this morning, opened straight away with my good eye, great. Seems to focus a bit better but not clear yet, still gets tired and cannot open it fully. Still bloodshot. Not getting the gritty tickling in the eye from previous days today so maybe a turning point. It does still feel uncomfortable to look left & right but more like the eye is the wrong shape for the socket. I would say almost there.

Day 9. I’ve now found out the small red/brown dots on my eyeball are actually sutures or stitches (should have guessed that) but it wasn’t mentioned before, they should be starting to dissolve soon, so it does make sense that is where the gritty feeling is from. Eye is still not clear blurred vision seems to be getting a little better each day but the change is quite small. Swelling around the eye has virtually gone but I cannot fully open the eye.

Day 13. Very slow tiny improvements over the last few days, have checked with the hospital and they say I can use comfort eye drops from the optician in between the drops they originally gave me to try and make the eye more comfortable. Apparently the stitches stop the eyelid wiping the eye properly which results in dry areas.

Day 20. Looking up & down is not a problem.  I have to be careful not to look suddenly to the left or right as that is quite uncomfortable (did it by mistake when not thinking). Eye is almost totally open and definitely less bloodshot, feels more comfortable but not totally right. 2 of the stitches appear to have dissolved now but the other 2 can still be felt. There seems to be times now that the eye is almost seeing clear (not blurred) but then it goes back to being blurry. I guess until all the stitches have gone that is how it will be.

Day 30. Visit to Proton Beam hospital today ( same place you are going I think) for the fitting of a face mask and for them to get measurements and do calculations for the future treatment.

Just wait for the little changes day by day and it will get better.

Not sure myself but maybe speak to the hospital to see if they can help with travel costs as you live further away than I did.

Best wishes

Hi all. Just wondered how everyone was doing now? This is my first post. I’ve had the markers inserted on Friday so very early days in my post operative recovery. I’m very sore.  Very interesting to see ho long it took with some of you.  Proton beam radiotherapy in September. A little apprehensive so any information greatly received. 

Hi there, 

I must admit that the Markers was not a pleasant experience. Had to bathe eye open for about a week but it had cleared up in a month. 

The PBT was ok. They are very nice in Liverpool and the thought of it is worse than the treatment. It didn't hurt at all and only took half an hour a day. The beam was only 30 seconds and it's just a matter of keeping very still. 

I had mine in February and really haven't had any pain since just slightly sticky eye in the mornings. Due to Covid I have had 2 appointments cancelled but have managed to see my local consultant. 

At present there is no change so I do feel a bit in limbo.

Good luck with your treatment. Hope you have someone caring to take you to hospital and look after you fir a few days.

xx

Thank you for your reply. Very helpful but I’m sorry to hear you’re in limbo. I was told 95% success rate so I hope you start to see some progress soon. Was there any burning sensation in the weeks after the PBT? I’m being well looked after but very scared but it’s helpful to see others stories. Good luck and take care and thanks again for replying.

No burning in the eye at all. Not painful, maybe a dull ache around the eye sometimes. I was told it could take up to 2 years before you know the outcome.

Hello Rob50, this is very helpfull, I just got back last week from Sheffield and the attempt we did on PDT (laser) didn't work and I need now to go to get Proton Beam therapy.

I found a video diary on the BBC website o the actual process in Liverpol and althuhg is daunthing it calmed me a bit.

The only thing I am still unsure is the actual surgery to get he markers in place.

Do you have same diary for days 1 to 4?

thanks a lot

Hi.

Yes the days were just like described, I'm sure it could be a bit different for everyone but for me the operation was just a matter of trying to relax on the day (easier said than done)  like I mentioned I think my wife and son had the worst time waiting, I didn't have PDT went straight to Proton beam, although you naturally worry it was actually pretty simple. I wrote the diary as the recovery was uncomfortable (not painful) as the eye was swollen but after a short time it was fine.

The staff at all the hospitals for the operation and the Proton beam were just fabulous, so try not to get too worried, it isn't as bad as it first sounds. At first when they told me what they were going to do I was panicking but afterwards realised it wasn't anything like as bad as I expected.

Good luck hope it works as well for you as it has for me.

Rob