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.

I'm so sorry you are going through this.
Do you have any support from family or friends? Is dds dad around?
Could you try to contact Macmillan? I'm sure they will support and provide the practical advice needed?

Thanks for replying. It seems particularly terrifying at night. No, DD's dad and I are not together. He and I keep in touch a little and I have contacted him - I'm hopeful that he will step up. I don't have much other family apart from my daughter - my mother is still alive, but elderly and a long way away. I have three or four good friends who will, I think, help - I am visiting one tomorrow. It gets the better of me when I'm alone at home, though. I will call MacMillan tomorrow and see if they can offer us some support. I'm used to coping and holding things together - and we've been through some hard times in the past - but this is something else. Such a profound shock. Such a sudden shortening of perspective.

Thinking of you & your daughter. People have beaten worse odds. Best wishes to you.

Thanks, cakeandchampagne. I am determined to be in the 50% who survive longer than 5 years. I'm worried, though, as the melanoma has grown even in the couple of weeks since I saw the optometrist - I can feel it pressing inside my eye now, and I couldn't feel it at all a few days ago. I'm thinking I had better wrap DD's Christmas presents tomorrow, just in case I'm sent quickly to hospital for treatment. Blimey, this is all just so out of the blue. I guess it always is, when something like this happens. It's good to be on here, though, especially in the small hours when it all feels a bit much.

Good idea to wrap the presents.
You might want to prepare a hospital (or extended doctor visit) bag for yourself- and a list of any special care your daughter might need, so things go smoothly when others are helping.

Yes, good idea, thanks. I need to think practically and stay focused. She says she just wants me and nobody else at the moment, but that's going to be tricky and we will need support. I'm doing lots of research too, to try to find out what might help in addition to the main treatment I get. There was I, thinking I'd work till 67, travel some more, maybe get to have a grandchild. I guess we all expect a long-ish life, till something like this happens. I am determined that I will have another few years. Suddenly, all that matters is just living, to be here for my DD.

We have this in our family, OP. The good news is, it sounds like you may have caught it reasonably early. (Most in our family have found it when retinas have detached, etc...) We live in Australia where routine screening for ocular melanoma is done with eye tests, so it’s often caught earlier than in UK. Also, immunotherapy treatment is improving prognosis, but stats haven’t caught up yet. They’re just too new. I hope that gives you a bit more hope. You need to start strengthening yourself now by getting some sleep, eating healthily, trying to avoid people with contagious diseases (easier said than done at this time of year, I know...) pay extra attention to hand hygiene, and remind everyone visiting to do so as well. Maybe start stocking up on some small, healthy, freezable meals as well. (Soups, spaghetti Bolognese with veggies, etc) and start to rally your friends if you have a group who might be your support system for when you start treatment.

What a shock for you op 😢 I agree that making a list of practical thing that need doing and getting some things organised to help your daughter is a good idea and gives you a bit of control over the situation.
I understand how scary night time must be so come on here and get some support no matter what time it is, we are all here for you xx

Justilou, that does give me some hope, thank you. I know there are new approaches undergoing trials too, and some of those look promising - for example, in connection with using the plant ardisia crenata. It's not ready for human trials yet, but the relevant chemical is in the edible leaves, so I'm going to add those to salads! So I'm just praying that I keep going long enough for there to be more effective treatments if it goes to my liver. I'm just trying to get my head around it all, and support my DD in coping - she is clearly terrified, and it breaks my heart.

It’s scary and it is a real threat to your future, but everything is still on the menu.
You can handle this.

scotslib, thank you so much. I think I will be a frequent visitor! I'm lying here, wide awake, listening to the wind and rain outside (I'm in North Yorkshire), trying to listen to see if my daughter is awake and hoping she's managed to fall asleep, and just wondering what on earth is going to happen to us. It helps a lot to have people to 'talk' to online.

cakeandchampagne, thank you! I will certainly try. I am trying to maintain perspective, but it is hard at night in particular. It does help a lot to have contact with others like this, in the small hours.

I can understand how hard and isolating that must feel.
You sound like a very strong woman who has been a single parent looking after your unwell daughter who clearly loves you.
This sounds like your biggest fight yet but you know what? You've got it! You've a reason to power on and fight this thing and you will!

marymungomidge I am very sorry you have this scary diagnosis and so much worry about the prognosis and your DD. Do call Macmillan, according to their literature they can offer a wide range of emotional and practical support. It sounds as though you need treatment urgently so do make a fuss and keep chasing if you don't feel things are moving fast enough.
Did you know there is a long-running thread for cancer patients in Health/General health? It is very friendly and supportive so do have a look and introduce yourself there if you want.
Sending you my very best wishes for successful treatment.

Just be careful of the plants, @marymungomidge.... I’m not at all dismissive of the therapeutic effects of the chemicals in these plants, but am concerned that the potential is there for side effects to rule you out of proven effective medical treatment. Unless you know exactly what you’re doing, they can affect your liver function (you’d be surprised how many common herbs and spices, ie black pepper, can!) and you would then find yourself ineligible for medical trials or immunotherapy. This is why I was suggesting just eating healthily and nurture yourself for now.

Hello. Just popping in to give a hand hold. Coping with anything at night alone is so hard, but you are not alone - we are all here.

Agree with PP re getting focussed and practical. Making lists and taking action are the best ways to help in the dark hours.

Do you do yoga or meditation of any kind? It could be worth learning some techniques to help keep the inevitable anxiety at bay. Maybe it's something you and DD could do together? Yoga is particularly good for taking control of your own body and learning to 'read' and understand it. Sounds all bullshitty but it really does.

Hoping that you can get some sleep. I always find BBC history programmes are great distractors in the middle of the night when I can't sleep.

Thanks, this is good advice - I will ask for an immediate referral to the Liverpool ocular cancer centre, which seems to be internationally renowned for dealing with this kind of cancer. It does worry me that I can feel the melanoma, more each day. So, I think I will take the next two days off work, and get organised before Saturday - presents wrapped, back-up arranged, fridge stocked. I have already bought a bunch of supplements, and researched diet (as expected - should cut out sugar - but also, apparently, this kind of cancer thrives in a high-fat, high-protein environment, so I'm going to be living on green veg and a very small amount of fish and pulses). So I'm going to give it all my best shot. I wish I had wider family, so that there was someone there to help. I won't be able to drive to the hospital on Saturday, because they will freeze my eye, so even that entails a 40 mile trip on public transport each way. I shall encourage my daughter to do an intensive driving course, so that she can, I hope, do some of the driving in future - also a good idea for her own independence.

lightlypoached and justilou, thank you! Both giving excellent advice here - I hadn't thought about the fact that eating random foliage might rule me out of other treatments! Very good point. Lightlypoached, yes - in fact, I used to be a yoga teacher, many years ago! So I should dust off my yoga mat and start doing that again. And gentle walks. I will also take your excellent advice about listening to a history programme / R4 podcast, and hope that helps me to get off to sleep. I feel so much more supported and gradually calmer.

Thinking of you and sending hugs. Hope everything goes well, stay positive and please take any offers to help for you and your daughter.

Thanks, eaglejulesk.
Just slept for an hour but have woken again feeling quite panicky. I'm trying to be brave but not really feeling it. I feel shaky.
You're right - we need whatever help is offered. I have to find a balance between what my daughter wants (just the two of us) and what we need (to start calling on a network of support).

Morning.

I hope you got some sleep.

Great idea about taking time off work. Make the most of the 2 days. I find that unexpected days off are always the most productive.

I know you are worried about your dd but this might actually end up being a good thing for her as she will gain more independence. You will be a super-team

X

Thanks lightlypoached, it's good of you to check back in on me this morning. I haven't slept much. I think my fear and anxiety have escalated in the last two days because of three things - till Tuesday, I was still very much trying to get through a number of key meetings at work in York and London but now that focus has gone and I have no very urgent work tasks till after Christmas; I told my daughter and so am having to manage her reactions too; finally, I can now feel the blasted thing, which indicates to me that it is growing - not a good sign. I've also done a lot more reading and research and, whilst I do think it's important to be as prepared as possible, the more I research this, the more I know that this is a swine of a cancer. I think all of this is combining to make me feel very wobbly indeed. It is helping tremendously to have this site and the support of you all - last night was very difficult, and everyone who replied to me helped me to get through. I'm hoping to continue on here. I have four or five close friends, and I know they will do what they can, but they all have their own particular issues too (one's husband has dementia, another has fibromyalgia and a range of other problems, for example). I wish I had a partner - I need a hug and someone to hold on to.

So, I've just had an unexpected text from my mother and her partner. I let them know just a very little about what was going on, but didn't really expect to hear much as we're not very close and she is elderly and lives a long way away. However, she has texted to say she is coming to help tomorrow. This is a very welcome thing. I am trying to look on the positives here too - this might bring parts of the family closer together.

I am sending you a great big hug from Australia, and letting you know that you have someone who is awake when the rest of your world is not. I am happy to be an ear if you need me.

What terrifying news. Big hugs from me. x