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Please give me some moral support

180 replies

marymungomidge · 19/12/2019 00:36

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.

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marymungomidge · 23/12/2019 18:15

Hello everyone - thanks again for the constant good wishes you're sending my way - it is just amazing that you're taking time out of your busy days to think about me, and I am uplifted by it. Thank you, notsodimwit, pinkprosecco, beansandcoffee, MarthasGinYard, Billy1966 and dear justilou!
Today I was visited by two good friends, and both helped in their ways. I've known both for 26 years, so they've known my daughter all her life. One came this morning - she is a great big personality, strong and foreceful - and offered lifts to hospital appointments and the use of her (enormous) garden to grow the things I need for my diet (she will do the growing and deliver the plants to me!)! The other is my dear friend who cam round a few days ago, a wise woman and counsellor. We talked about change and getting old and loss and death and Buddhism and Quakers and silence and acceptance and funerals and ... lots more beside. She left me with some beautiful music to listen to, and a good book. And in between times, my daughter made me fresh green smoothies for lunch, with all the right green veg and herbs. Then, I did a little yoga, played a few carols (badly) on the piano, and now am settling down for a movie evening with lovely daughter in the light of the Christmas tree. How's that for a day of self-care?!! I am so lucky to have them, and you, and the peaceful rest brought by Christmas. I know that after this brief respite, there are very difficult times ahead, in all likelihood, but - maybe just for now - peace and goodwill do seem very real this year. xxx

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nononever · 23/12/2019 19:04

Mary what a lovely story about meeting a new friend, that was heartwarming to read. So pleased you have good friends around you too. Hope you are able to relax and enjoy Christmas with your daughter 🎄💐

billy1966 · 23/12/2019 19:39

Another lovely update OP. Glad you have had a good day and the support of great friends.

Taking each day as it comes is a skill in itself.
Wishing you well OP💐

beachcomber70 · 23/12/2019 19:45

Mary your post has moved me. I know how difficult it can be in the early hours with real worries on your mind. But always come on here for support as there will be someone to listen. People can be so kind when they are aware that others are struggling.

I hope you can find peace this Christmas, and strength for times ahead. I wish you and your daughter well, and it sounds as if you have very good friends to help you both.

I live alone now and have often had lovely times chatting to people I have met on walks/on the bus! It makes my day to connect with pleasant people and restores my faith in human nature. The lady you met sounds very understanding and I hope there is a lovely friendship there for the both of you. All the best.

clippityclop · 23/12/2019 19:48

Sending a hug from across the sea and my admiration for your strength and practicality. Enjoy Christmas, draw on the support around you and on here. Will be thinking of you xx

MarthasGinYard · 23/12/2019 21:07

Thanks can hear those Carols Op

Fabulous Grin

StartupRepair · 23/12/2019 21:28

You have some lovely people in your life. I am so glad you are getting in some self care and connecting with friends old and new. Serious health conditions can help to get to the heart of things.

justilou1 · 25/12/2019 00:49

Merry Christmas from Aus, @marymungomidge!!! I hope you and DD have a wonderful day!

Please give me some moral support
marymungomidge · 25/12/2019 12:52

Justilou, merry Christmas! I hope you're having a wonderful day. And a very happy Christmas to all who have posted on here to help me through a difficult few weeks.
DD and I are having a lovely day :) Just cooking Christmas lunch together at the moment. I hope you're all having a lovely time xxx

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billy1966 · 25/12/2019 12:59

Delighted you are having a lovely day too.
Every good wish Mary💐

justilou1 · 25/12/2019 13:51

Thrilled you are having a lovely day! I am never eating again! (I roasted a duck for the family. Far too hot to be cooking if you ask me, but they loved it!) Just about to wipe the stove and take the dog out for a pee. We have had a reprieve from the heat with some very welcome, gentle rain. Would be super if it went on some bushfires as well, but I don’t think we’re that lucky. Meanwhile, I am loving the cool breeze!

cakeandchampagne · 25/12/2019 13:59

Merry Christmas to you & your daughter!

nononever · 25/12/2019 18:49

Merry Christmas Mary, glad you are both having a lovely day.

marymungomidge · 25/12/2019 22:09

Off to bed soon!
So, we had a lovely time - lots of presents for both of us to open this morning, then very good roast dinner - and I managed to resist any choc or cream or other things not on my new healthy diet, except for the tiniest bit of Christmas pud :) Then a quick walk in the park, Scrabble and TV. Very low key, very ordinary, very wonderful.
I am slightly wobbly now it's over - maybe the build-up to Christmas got me through the last few days - I feel I will soon have to start focusing on this dratted tumour again. But not today, and not tomorrow. And it was a huge blessing to be able to enjoy the day in a very straightforward, normal and cosy way with my DD.
I hope you all had wonderful days. xxx

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justilou1 · 25/12/2019 23:49

You did very well today! Now you have New Year’s to focus on!

MarthasGinYard · 26/12/2019 00:19

Glad you've had a good day Op, sounds just lovely.

Sleep well

marymungomidge · 26/12/2019 16:03

You're right, justilou - I just have to focus on the next thing. Good advice. Part of me is tempted to book a couple of days away with my daughter over New Year; but sensible me thinks we should maybe just stay home and let things settle. I'll also need time to check out life insurance, pensions, disability payments, and all that palaver, so probably going away is not a good plan. And I need to see when my appointment is at the oncology clinic. I guess travel insurance might be a bit tricky at the moment, too. So - a week at home, next week. My awful mother tells me she wants to come back for a couple of nights, and I feel I should let her so that she can build her connection with my daugher but I might just take the opportunity to go round to a friend's house while she's here. There has to be a balance between making sure strong networks are in place for my daughter, and keeping my own stress levels at manageable levels!

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SingingLily · 26/12/2019 16:32

Just sending you my very best wishes too, Mary.

My husband has two cancers, not the same as yours, but one slow growing and one fast aggressive one. Both are incurable. The treatment for the second one is brutal but he's been dealing with one or the other for 22 years now. Every time he seems to reach the end of the road in terms of treatments, another new treatment pops up and so he keeps going. We take each day as it comes and let tomorrow take care of itself.

Sending you hugs and luck and hope and strength. You are a remarkable woman 💐

marymungomidge · 26/12/2019 18:47

Thanks SingingLily, that's very positive! And thanks for sending hope and strength - am rather wobbly today, and it's lovely to be able to draw on your support. I'm sorry to hear about your husband - it must have been really hard to do 22 years day-by-day. Good luck and hugs to both of you too. I know there are one or two potential treatments in pre-clinical trial for ocular melanoma, that focus on the metastatic stage, and I just hope they arrive quickly. I think, because it's such a rare cancer, it hasn't perhaps received the same attention and funding as some cancers, and so I gather that survival rates for this have not improved in 30-50 years. I am wondering if there are ways of raising it's profile so that it attracts more research funding.
I think I need to get outside tomorrow! Maybe a walk and a film ('Little Women' would be my choice).
Thank you for your support xxx

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StartupRepair · 26/12/2019 19:56

You rose so beautifully to the challenge of Christmas, of course you feel a bit wobbly in its aftermath. Hope you can sidestep your mother in whatever way works best.

justilou1 · 27/12/2019 01:23

If your mum is that awful and that um... alcoholic, do you want her hanging around your daughter? (You have said that she is vulnerable... do you feel confident explaining why? You can pm me if you like.)

marymungomidge · 27/12/2019 11:18

Thanks, StartupRepair! I guess that's right - Christmas was so lovely, and now it feels like the time to settle and reflect. No bad thing, but difficult. I'm just grateful that Christmas gave us some space to have joy and peace for a few days, before turning again to think about what 2020 might bring. I'm trying to strike that balance - living life fully and joyfully and without undue focus on the cancer, but making sure I know enough and am prepared enough (practically and emotionally) to ensure DD is in the best place to cope. She is subdued today, but keen to go to town for food and to see Little Women. We're going to meet one of our oldest friends there too, a wise woman who practises Reiki (not really my thing, but still) and who, in her younger days, ran a women's refuge and was one of the Greenham Common women :) An amazing character! She is a bit like a substitute grandma for DD and mother for me, given my own awful mother's inability to be a decent human being :) So, she's coming for food and film and a sleepover :)
Justilou, it's a very good question, and one I ask myself a lot. My mother and I have never had an easy relationship, because of her heavy drinking, but also because she is an extremely unpleasant character in lots of ways - very unkind about people, very judgemental, very narcissistic, very snobby. Over the years, I've seen increasingly little of her as a result. She can be very damaging. She lives around three or four hours' drive away. For my own part, I'd come to the conclusion that I didn't really want to see her any longer, but that I didn't particularly want to cause upset to an elderly woman (she is now 76), so a visit once a year and emails in between felt right. She is quite comfortably off and has a younger, healthy husband and two or three friends near where she lives, so I don't feel that she is isolated or struggling in any way.
However, I do worry about DD. I will DM you about her. I know she would find things very difficult, emotionally and financially, if I kick the bucket. My mother would provide a home, if need be. I don't think it would be ideal, because my mother really is quite appalling and manipulative and self-absorbed - but, at least it would be a secure place to live. DD would make her own decision, of course, but I suspect she would need the back-up quite strongly. DD doesn't like my mother much either, but she isn't really in a position to live by herself.
When my mother offered this (with undue pleasure, to be honest! She likes my daughter, though not me! She is actually rather pleased that she might get DD to live with her), I felt glad that DD has someone as a backstop. This in itself makes me more able to cope with this cancer. However, I will have to manage my own time around my mother carefully, as she really is frightful and sees the cancer as 'just another problem' I've caused her. (You'll gather there is history here - I ran away a lot as a teenager as it was quite unbearable at home.) She's massively indiscreet, and so not someone one would expose emotions to.
Anyway! I will DM you with more! All advice about this tricky situation much appreciated - how to look after my daughter, how to suddenly turn my mother into a pleasant person (not going to happen, I know), how to keep going forward with joy and peace. On my own account, I certainly don't want this adventure to be over for a good long time - but I am not especially afraid of treatment or illness (I also have chronic fatigue syndrome, and know what it's like to be ill a lot) or death. Yet - that might change! I have curiosity about what will come, and certainly don't feel, 'why me?', since - of course - why not me? I've never asked 'why me?' about good fortune, and am not about to start in relation to this! There are no underlying reasons, I feel - just that stuff happens. I was a Buddhist for a long time, and so I guess I need to draw a bit on Buddhist teachings about impermanence and equanimity. I'm now, very loosely, a Quaker, but haven't been to a meeting for ten years. I may, in time to come, revisit the Buddhist centre and Quaker meeting; but maybe not! At present, I feel that the forest and the sea and the moors are my meeting house.
Thanks again for all your support and advice on here - you have no idea how much it helps to be able to come on here each day and clarify my thoughts, get advice and good wishes, and process things. It's keeping me going in difficult times. How kind people can be - strangers who have just decided, out of kindness, to help get me through this - and now, I feel, not strangers at all.

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marymungomidge · 27/12/2019 11:34

Hi again everyone. I just had a phone call from the Sheffield ocular oncology clinic and they've given me an urgent appointment on New Year's Eve at 10am. So, rather quicker than I expected, and I'm glad I'm being seen soon. However, I feel a bit panicky! Please send good wishes and prayers. Thanks. xxx

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cakeandchampagne · 27/12/2019 11:49

I’m glad you were given an appointment so soon, and on New Year’s Eve! Wear something festive! Smile
Best wishes!

movinggoalposts · 27/12/2019 12:01

Sending you best wishes. It’s best that the appointment is soon as the waiting is what drives you up the wall (I had cancer five years ago so I remember the feelings well). At least you can get the waiting out of the way quickly.

There’s a good article on the BBC site today about cancer patients getting fit for treatment. I wish I’d done that. It sounds like you are eating really well which is fantastic. I’d add in some Epsom salt baths too to help detox.

It might be worth trying reiki whilst your friend is there. My diagnosis opened my eyes to all sorts of new treatments and your daughter may enjoy it too.