Hi Bob

Joyce P replying. I have a nevus ( type of mole) in my left eye and during an annual eye test it was found that it’s turned canerous. I have just had the 1st anniversary (28 Oct 2017 a date I shall never forget as its my wedding anniversary too ) since completing Proton Beam therapy having had tantalum markers placed behind my eye which was carried out at a hospital in London followed by the Proton Beam therapy undertaken at a hospital in Liverpool. After surgery my eye was uncomfortable, double vision like yourself and very bloodshot but soon settled down.

The PB therapy was totally pain free, I went to Liverpool for 2 days to have a face mask made then three weeks later back to Liverpool. It seems that they follow the same treatment program, Monday  the rehearsal day followed by treatment each day from Tuesday through to Friday. For me each treatment took only 30 seconds! However the whole process took longer as you have drops put into the eye then they need to ensure you are in the correct position. After this you have a cooling pad placed on to the closed eye which they suggest should remain for at least one hour. After that you’re free to go until the following days treatment.

All the staff at the PB clinic were second to none, fantastic people.

I considered myself fortunate as once leaving the hospital we were off exploring the area each day and glad to say without any ill effects except for my emotions which often got the better of me and still does. 

Since my diagnosis I have 6 monthly abdominal scans and will continue to do so for life, this can be a very anxious time not only for myself but my family too but hey ho! the NHS certainly come into its own when one has the “ C”, thank goodness.

I attend the hospital in London regularly, in fact I go back again later this month. As the ultra scan results etc are showing that my tumour has grown in size since having PB therefore I have attended the clinic every 3 months but it is hoped at my next appointment the tumour will be showing signs of reducing.

My sight has been affected, I have no peripheral vision in the affected eye but can drive, read without glasses etc so I feel fortunate as I realise things could be so worse.

I wish you well for the future,  please do give me an update on how things are going for you.

regards Joyce

Hi Dotspot

I like your username (Dorothy’s freckle), very sorry to hear about your sight loss. I like you did/do not fully understand the possibility of this as you always want to think it won’t happen to you !. How are you managing to cope with sight loss and how does it affect you ? I am very worried about this side of things.

Thanks

Bob

Hello Joyce P

Thank you for replying to my post. I too am going to the hospital in Liverpool. Being fitted for headbrace on 13/11 and then start treatment 3/12. I live in Devon so quite a journey.

How is your vision now Joyce? Did it affect it . How long after you had the tantalum markers were you able to open your eye properly. I am 5 days post op now and it’s still very sore. Do you also have to have stomach scans every 6 months ?

cheers

Bob

Hi Bob

How I sympathise with you being at the beginning of your journey but please try not to worry too much, remember there are a lot of people who will be there to help you.  Remember your eye has been through a lot, it’s  traumatised by the surgery. Where did you have your operation? 

The staff at the hospital in Liverpool understand the anxiety you will be going through and do their very best to help ease the angst. So if your visit goes as mine did you will see a consultant whilst at the hospital in Liverpool who explains everything that will happen ( during treatment) and things that may happen because of the affects of the treatment such as sight loss but as everyone’s diagnosis is different the extent of sight loss varies. It was explained that PB is a very exact “gentle” treatment however that does mean it can take a long time to finally destroy the tumour. But to ensure all the tumour is affected a very small percentage of good cells are affected too but it’s a very small price to pay don’t you think?

 I live in East Sussex so like you it was a long journey but the hospital inLiverpool will arrange the hotel and taxis to and from the hospital, in fact it all worked like clockwork, each day at a given time you go to reception and wait for your designated taxi. The hotel staff are sympathetic as to why you are staying with them. We found the taxi drivers very friendly they regularly do this run so know the ropes well and often the same driver takes you back to the hotel, they chat away and wish you well. All that you pay for is the travelling from home and return plus food and beverages everything else is charged to the NHS.

After my surgery the eye was very good considering, it got sticky often and needed bathing regularly.  I was back to work in a week, working at a screen all day but took regular breaks.

The sight loss happened very slowly, a good thing maybe as my good eye was able to adapt. I say “happened “ as I now think any more loss of vision has slowed down considerably maybe even stopped, hopefully! Apparently my tumour points inwards towards my nose but because it is very close to my optical nerve any treatment I had would affect my sight. As I said in my earlier post I still drive and will do my best to continue to do so but not at night. However I do wonder if my night vision would have deteriorated anyway due to my age as it so often does when one gets to a certain age!

I have abdominal scans every six months and will do so for life, it’s all very stressful, guess it will always be like it but at least if anything untoward shows up hopefully it will be nipped in the bud before it does too much damage. 

Bob, I wish you all the very best, and I’m sure I don’t need to remind you, this disgusting disease will not win.

Regards

Joyce

I had to go to Sheffield from Newcastle right from the beginning.I had laser treatment first three shots at monthly intervals then six month appts. The staff are truly wonderful.In July my consultant discussed ruthenium plaque surgery. Apparently my melanoma freckle thing was small and thin but at this appt he wasn’t entirely satisfied about a small speck so we talked surgery. It was done over five days, I travelled from North East on the Monday morning and had ruthenium plaque surgery done on aft. It stayed in place until Thursday aft then removed. Both ops done under general anaesthetic.I went home on the Friday. I had check up two weeks after and everything was ok. It was a few weeks later that the shadow came in the eye and is now permanent. But on the plus side my good eye is very good so I’m learning to cope . It is worrying as every time I have an ache or pain I relate it to eye problem. Trusting in God helps me but I even have shaky times there.Waiting for December appt and still worrying

Hi Joyce, thank you for your prompt and informative reply.

My operation was at the a hospital in Sheffield. My doctor was very supportive and explained everything but I think I was still in shock at the time as I didn’t take it all in. Sorry to hear about your sight loss but well done you for coping so well to date. Hope that your scans continue to be clear in the future.

Thanks for your reply and take care. 

Hi 

Thanks for your reply Dotspot. 

I like you am worried about what’s around the  corner but as you say hopefully I will learn to cope and get through this rotten time.

Hope everything goes well with your next appointment in December.

Bob

Good morning Stuart, 

we "the special people" who have this very rare type of cancer and undergone Proton Beam Therapy (PBT) may have been even more special.

During your PBT were you lucky enough to see the Cherenkov radiation?  I did and it was quite amazing.

Cheers,  Tony.

Hi Bob hope your all well after your treatment.I am going to the hospital on monday to start my proton beam treatment for the week.I pray they kill the tumour I have .