Help - Any advice on counselling / helplines

[mukey]

I don’t post a great deal on YD (other than advertising spaces) but I am an avid reader of the forums, know quite a few people on the boards and feel that I am a part of the community and therefore able to post this.

This week our lives have been turned upside down. My wife Mandy (we have been together 25 years and are seriously close ! – yukky bit over) has been referred to an Ocular Oncologist (Eye cancer specialist) in London following a high street eye test.

We both went to a well known high street opticians in October for eye tests and were both basically told – ‘Pretty much 20/20 vision with no problems’. ‘Funny ! ’, thought Mandy ‘I’m sure my right eye vision is not as good as it was, BUT they are the experts.’ Anyway, her vision has not been great out of her right eye for the past couple of months so she went back for a test on Monday (to a different opticians, I hasten to add !) and within three hours was in the Emergency eye clinic at the local hospital seeing (I believe) a Junior eye consultant. He told us that Mandy has a Nevus (like a mole) on the back of her eye which is leaking fluid and is therefore suspicious. As a result she has been referred to ‘The top man’ at St Barts Hospital in London for further examination and diagnosis.

Basically, a ‘suspicious Nevus’ can turn into a melanoma on the eye (in the same way as a mole can go on the skin) although it is very rare, and this is what we are now really worrying about.

After a hellish couple of days (Self diagnosis on the internet is a bloody nightmare !), I have managed to speak to this guy’s secretary who says that the appointment will be on February 9th (3 weeks - aaarrghhhh !). Apparently there is no point in trying to arrange it privately as it won’t be any quicker – He is out of the country next week and consequently fully booked out the following week. I must add that this lady has been exceptionally good despite me badgering her continually over the past few days. She says that a referral is NOT a confirmation of Cancer and it appears that even if it does go this way, the outlook is fairly positive.

Our problem is that we now have to try and live as normally as possible for the next three weeks without worrying the kids (We have told them the facts but not the speculation). What make’s it worse is that both of our birthdays are next week (Mandy 40 and me 41) and we have lots of celebrations and stuff planned which will obviously be affected by this – although Mandy has already said that we’re not bloody cancelling anything and is contemplating a pirates outfit with eye patch for her party on Saturday (Good girl !!).

Does anybody have any information regarding organisations/ individuals who we might be able to talk to in order to get more information on possibilities, outlooks and so on ? Obviously, organisations with specific knowledge of eyes would be best or failing that just someone to help us come to terms with the fact that she hasn’t been diagnosed yet and we need to carry on as normally as possible. It just seems that now we are in the limbo between consultant appointments, there is nobody we can actually talk to. I have already Google’d just about everything in this respect but can’t really find anything other than General counselling or Cancer counselling.

Even typing this has been somewhat therapeutic to me so I must at least thank YD for that.

[IanD]

Sorry to hear your having a rough time, hope it all works out for you.
Give the guys at Macmillan a ring, they are fantastic.
Macmillan Cancer Support
Ian

[frosty the snowman]

Markus, sorry to read your worrying news. Try Cancerbackup online: cancer information, support & resources

I'll send a PM as soon as I can as I have some limited experience of this sort of thing which may help.

[frosty the snowman]

Also try Moorfields help line.

[purple vonny]

As Ian above says, Macmillan nuses are good to talk to about this, they recognise that relatives need care at times like this too and they would be your best source of counselling and support.

[Buoyant Babe]

Originally Posted by purple vonny

As Ian above says, Macmillan nuses are good to talk to about this, they recognise that relatives need care at times like this too and they would be your best source of counselling and support.

Agreed. Thoughts and prayers for you and Mandy and your family at this time.

Helen xxx

[yazzyfooty]

Markus
I applaud your wife's positive attitude and she could be a great role model for some of the more self pitying posts that get placed on YD.
Enjoy your forthcoming birthday celebrations. We all fear the worse when we hear the word cancer however, if it turns out it is cancerous then already you are under the medical care system and if it turns out it isn't then you will look back and laugh at the stress you put yourselves through.
Good luck to your wife, to yourself and to your family.

Cancerbackup online: cancer information, support & resources

[abucksdiver]

I can deeply sympathise with your situation... a year and a bit ago, I was diagnosed with Prostate Cancer - at 41!

Initially, mine and my wifes lives fell apart, but we talked, we made plans, we cried, we talked to friends and family about it, I got the surgery done, and now we are getting on with life.

Put your faith in your consultant... they do this day in, day out. However, if you are not happy with your consultant, get a second opinion. The one thing I found the most help, stay positive.

Have the party... if nothing is wrong, you will regret cancelling it, if something is wrong, you've got something else to look forward too that will help take your mind of things...

Thinking of you both and praying for you.

Andrew

[Mary]

I would second Cancerbackup online: cancer information, support & resources

You have mail...

[judith9]

Hi everyone

I am not a diver, I simply joined this forum in order to reply to Markus' call for help.
I live in a small Southwestern Ontario town in Canada.

There is an ocular melanoma support group on Google groups if you want to "talk" through e-mail or on-line posts to people who have this rare disease.
ChoroidalMelanoma : Choroidal Melanoma Chat . The people on the board are very welcoming and supportive.

You can also find useful info at Welcome to the Eye Cancer Network: Eye Tumor Information, Doctors and Links , a site set up by Dr. Paul Finger, a well known and highly recommended ocular oncologist in New York.

I found these sites when my ophtamologist found a suspicious nevus in my right eye.

I'm glad to hear that you are carrying on with a "normal" life. I hope you guys really enjoy the birthday celebrations.

all the best,
Judith