Please give me some moral support

[marymungomidge]

Hi all, I'm really struggling - I've just found out I have choroidal melanoma (nasty eye cancer that has a 50:50 chance of survival) and today I told my daughter. She is 24 but still lives with me because she is very unwell and I look after her. She is bright and beautiful and lovely and funny and so, so vulnerable. I am terrified about what may happen to her if I die. She is, understandably, reeling from the news, which I had tried to keep from her till I know more. She found me crying this morning, though, and something had to be said. I'm 53 and completely stunned by all this - life goes from, one minute, planning ahead and expecting another 20-30 years, to suddenly finding that it may come to a stop soon. I can't bear the thought of leaving my daughter. Please help.

justilou, you are fantastic. Thank you. I will take you up on that. It sounds like you've got a lot of experience with this kind of cancer (for which I'm very sorry), and a lot of good sense! You might just stop me eating my houseplants :)
Seriously, thank you. I am really moved by the support that got me through last night. I don't know how I would have got through without it, and it's so kind of you to offer continued support. It's amazing that someone on the other side of the world is there for me! Makes the world feel a brighter place - I don't want to get too cheesy, but at times during the night, listening to the wind howling outside, things felt metaphysically bleak, and the messages on here got me through.

You’re very welcome!!! I’m here!!! Yes... two family members with ocular melanoma, and a couple with the same kind which started under fingernails or toenails. It’s pointing to a definitely genetic predisposition. (Although we are all green-eyed and quite fair). This was a few years ago now, but as I have kids, I have kept abreast of the latest info via ophthalmologist & dermatologist at regular check ups. (Obviously big on taking preventative measures too!!!)
I do want to remind you that while I am not inclined to offer false hope, I believe you have found this fairly early. Please try not to panic just yet. Most people don’t find out about this until symptoms are much more severe.

Justilou, thank you. I'm sorry to hear about your family members - that must have been very difficult. I hope they both recovered and are still well? It sounds like Australia is a bit more aware of this kind of melanoma than the UK - I'd never heard of it before. I also thought at first, that it would be just like a dermatological melanoma (ie with 90% 5 year survival etc), so wasn't unduly worried till I read more and found out about the 50/50 survival rate etc. But you may well be right - I might have caught this early, and it might be small and manageable. I'm a bit worried because I've gone from being completely unaware of it, to having it found by the optometrist, to being able to feel it - like grit at the top of my eye - all within a month. I wonder if that suggests it might be fast-growing. I know it has some of the other signs of a nasty melanoma - lipofuscin, irregular edges and so on. This morning, I think my eye actually looks different. I have one blue/grey eye and one greeny/hazel eye, and it's in the blue/grey one. I only have two days now till my appointment, and hope I can get a referral to the eye cancer clinic very quickly after that so I can get treatment started - everything I've read tends to suggest that early treatment is crucial.
Thank you for being there! x

I’m glad your mother is able to come and help. I’m sure she is hurting for you.

Make sure you reach out to people - the offers if help we've had have come from the strangest of people and the ones I thought would step up have been silent 😥

I agree that the worst thing you can do is to assume how much support people are willing and able to offer you. Let people know what’s going on (maybe after your appointment and you have a better idea yourself), and you might find yourself having to beat people off with sticks. But for now, the first thing you need to do is to focus on the appointment. As you know, stress puts your blood pressure up, and increases the pressure in your eyeballs. (Could explain why you’re suddenly feeling this little bugger in your eye). It also increases the levels of the nasty hormones that feed the growth of tumours. We want to avoid as much of this as possible for now. So easy to say, I know - the waiting is horrible. Meanwhile, once you are no longer wondering what you are dealing with, you will feel more in control, and hopefully your anxiety will decrease as you have some sense of direction. Please keep me in the loop. I will keep checking in on you. You are welcome to let me know if you are having a wobble and need any kind of company.

Oh my goodness, you are good people! Justilou, your advice is so good. You're right about trying to stay calm, and I guess it's possible that the discomfort in my eye is exacerbated my increased blood pressure due to stress. I'm very grateful for your continuing offers of help and would very much like to stay in touch. Thank you. Notapizzaeater, you're right - it's difficult to know who will / can help and who can't. I wonder if my mother might become closer to my daughter now. That would be rather good. Also, I had my closest friend round this afternoon -she is an extraordinary woman - a counsellor and wise woman and just the person you need at your side. She is the one I mentioned whose husband has dementia. She was so kind and supportive and made it very clear she is there for me and my DD, come what may. She lives 5 minutes' walk away, so that is very good. She spent some time just with my DD too, and I was very relieved about that. DD is in denial today - she is staying very positive, but possibly too positive. She has clearly been doing some reading of her own, and she thinks my melanoma is likely to be stage 1, on the grounds it's not causing any difficulties with my sight yet. That would be great, obviously. I haven't told her I can feel it, though. Must dash - here she comes. I will no doubt be back on here later, during the night. So grateful. Oh, I also joined the Ocumel Facebook support group.

Sounds like the steps you have taken so far are very practical for yourself and DD!!! So pleased you have some lovely support IRL. That’s what you’re going to need most!
(*Hint - might be in your best interests to just stay away from American support groups & forums. Their advice is often dubious, and due to their woeful medical system, their outcomes are really bad. Also, hate to say this, but they are a slightly histrionic bunch!)

Just wanted to pop back in and see how you are doing? Really good news your mum is coming and you sound like to have a good support network around you.
Sorry I've got no real practical advice but it looks like justilou1 has you covered there.
Plenty of people here ready to support you

I'm so pleased to hear that your Mum is coming to give you some support. Sounds like you have good friends too, which is important. Big hugs to you and your daughter.

Thank you everyone, I really appreciate your support. I actually slept through last night for the first time in a week.
Justilou, that is very good advice, thank you! I will ignore!
At present, I've just finished work for the Christmas hols. I've had advice from the Ocumel support group that I should try to see someone urgently, as my melanoma seems to be growing. So, this is easier said than done on a Friday before Christmas! I'm spending the afternoon phoning around three of the four UK clinics (I think the fourth is in Scotland) trying to get an urgent appointment, but no luck so far. I have a private ophthalmology appointment tomorrow (no health insurance, but I want to move things along as quickly as poss as early treatment makes a difference, so am spending my holiday money :)), and I'm hoping she might be able to get a referral appointment more quickly than I seem able to. I'm also considering just turning up at Moorfields eye hospital A&E on Monday, though I live in North Yorkshire. I'll see what advice I get tomorrow. Please, my lovely new mumsnet friends, send me prayers and good luck tomorrow morning. I'll let you know what the outcome is. I am so touched by the support I've got from you on here.

Best wishes for tomorrow!

Thanks everyone for your support :) I'll let you know what happens. My mum came to stay, by the way, which is kind - but she told me I cause her endless trouble! Then she drank two bottles of wine. I have to pause and think - ok, she is offering practical support in the form of driving me to hospital, and would be there for my daughter if need be. Those things are extremely important, so I am taking the rest with a pinch of salt. Onwards and upwards!

So sorry you are going through this OP. Did your optician not refer you as an urgent referral to an eye unit. My friend had a retinal tumour and was treated with plaque brachytherapy which can also be used to treat your condition. She's now on 6 monthly check ups and looking good. Some information here eyecancer.com/eye-cancer/treatments/eye-and-vision-sparing-radiation-therapy-for-intraocular-tumors/. Pleased your mum is there for support. Wishing you the best.

Just another mner adding moral support. Thinking of you.

Oh boy... there’s support, and then there’s “support”! Sorry about your mum. I hope she’s gone home so you can relax!!! (Mine was hard work too. So much for that!!!) I hope that the ophthalmologist can speed things up for you. Stupid Christmas does rather get in the way! (Although, does give DD something to focus on, I guess!)

Another one here for you OP, sending good luck and best wishes to you for tomorrow.

Take what you need from your mum, grit your teeth and ignore the bad bits. Things like lifts will be really helpful in this cold wet weather x

Morning everyone - you really are the most remarkable lot! Thank you for checking in and for your very wise words and humour and understanding. Nononever - you're right, I'm beginning to realise that's what the optician maybe should have done - I'm hoping the ophthalmologist will do it today. Then maybe the plaque treatment you suggest, or something called proton beam therapy - there's a BBC film, 5 minutes, of Rory Cellan-Jones very cheerfully undergoing this, if anyone wants to see what this looks like - or eye enucleation. Scattercushion, thanks for being there for me. Justilou and Daisydools - I'm trying to ignore the worst bits of my mother as much as possible (you can tell we don't have a great relationship!) and focus on the positives, but I shall be glad when she leaves - tomorrow, I hope! In a strange way, the awfulness of the things she says has made me woman-up! And the most important thing for me will be that DD has support, so I have to take everything else on the chin. One of the bottles of wine she drank was a bottle of Champagne I'd had in the fridge for six months, waiting for the right moment to drink it! Awful old bat - so awful it's actually quite funny, I suppose. She also brought all her laundry to do. Blimey. Anyway, the lifts to and from York will be very helpful. And justilou, my dear, you're right - Christmas gives DD something else to focus on and will give the two of us a breather amidst all of this horribleness. I guess we might be more subdued than usual, but it will be good to snuggle up by the fire, watch cheesy movies, and rest. Two lovely Christmas things we have already done: carol concet in York Minster last week, which was wonderful; then a drive over the snowy North York moors and through Dalby forest last Sunday - just beautiful. DD doesn't walk far because of her illness, but in the middle of the forest I parked for a few minutes and went off for a short snowy walk under the pine trees. There was one particularly huge and beautiful one, covered in snow. It was big enough for me to get right underneath and stand next to the trunk, looking out at the silent snowy forest through the boughs of the tree. As I stood there, the sun broke through the mist and lit up all the drops of water on the tips of the boughs of the tree, so it looked like the prettiest Christmas light you've ever seen. So, there was I, peering out from the centre of a Christmas tree! (Then I walked on down the path a little, and melting snow fell off another tree and hit me on the head :) Right back to reality). Anyway, this morning, while being tested, I shall be thinking of three things: i - all the amazing support people have sent me on here; 2 - that beautiful moment in the forest before I got snow down my neck; 3 - how to send my mum packing as early as possible :)
I'll post an update later. xxxx

Good luck this morning Mary, I hope the ball starts rolling pretty smartish for you once you've been seen

Just wanted to say the very best of luck this morning.

Good luck x

Poor souls - that is really hard. Very sorry to hear this. I have no good advice but just wanted to say that I shall light a candle for you and sending you best wishes

Good luck and a very unmumsnetty hug for you and your daughter.

Wishing you strength and peace.

Good luck, Mary. Thinking of you today. X

Is it today already!?!?! Good Luck! You don’t need that - you are making your own anyway! 💪 You’ve got this! Today’s been an odd duck of a day for me. FIL and his his wife were here today for early Christmas. I like him, but I find having to “decode” him so frustrating! My DH’s stepmother is much easier to “get”... Anyhow.... I find him hard work, but he’s a nice man. He’s having chemo and today was our Christmas, to wrap around that. Today is also the 3rd anniversary of my mother’s death (lung cancer) and trying not to let the lemon juice of her dysfunctions leak into my emotional paper cuts. Christmas is such a weird hiccup in the year... and I hope you get some sense of direction!