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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.

OP posts:
marymungomidge · 21/12/2019 14:28

Oh blimey, justilou, sounds like you have loads on your plate at the mo. I hope you're ok. Vivid image about your mum, and I know exactly what you mean - I have, by the sound of it, a very similar relationship with my mother. I'm sending hugs.
So - the ophthalmologist found three lesions, one larger than the others, and has referred me to the Sheffield ocular oncology department. Christmas will delay things slightly, but even so I should be seen in two or three weeks. I guess this isn't exactly good news - but then again, I won't know much more till after the Sheffield appointment, so I'm going to try to be as positive as possible and concentrate on having as good a Christmas as possible with my daughter. I have two weeks off work now and intend to rest and relax - once I've got rid of my awful mother! Going to have a nap now as rather tired out by it all, and am still waiting for my dilated eyes to return to normal. Onwards and upwards! And thanks again for your continued support - so wonderful and so helpful.

OP posts:
nononever · 21/12/2019 17:52

So pleased you have been referred Mary. Hopefully your appointment comes through pretty sharp and hoping your mum goes home and leaves you to have a nice peaceful Christmas with your daughter Flowers.

marymungomidge · 21/12/2019 21:15

Thanks nononever! My awful mum leaves tomorrow, and then I plan to have a lovely, calm time with my daughter for the next two weeks, as much as we're able. Off to buy the Christmas food tomorrow (but none of the sweet stuff for me - am very mindful of all the things I've been reading about healthy eating); friends popping in for coffee on Monday; then two or three days of snuggling up by the fire watching Christmassy stuff :) Very much looking forward to it and will do my very best not to think about my eye for a few days. I guess I'll continue to have ups and downs over the next few weeks - eg - I know that anything over 3mm is much more likely to metastatise, and my largest one is probably around 7mm, so I can work up a bit of a panic if I think about that :(. But I will start doing yoga tomorrow and see if that calms me. Hope everyone is well and happy and also looking forward to Christmas, and thanks once again for your amazing support. I am just bowled over by the care you have shown me, all who have posted, and want you to know that you have made a very real difference to a very frightened mum and daughter in North Yorkshire. xxxxx

OP posts:
notapizzaeater · 21/12/2019 22:58

Here just to let you know I've been thinking of you, I had an eye issue 25 years ago and got brilliant care at Sheffield - ended up having surgery, and in a bed for 2 weeks, but they where great.

justilou1 · 21/12/2019 23:00

I can attest to the inflammatory effects of sugar. I have been sticking to a medical keto diet (not the Pinterest, all you can eat bacon & weird coconut one) for severe migraines for 2.5 years. If it didn’t work, I wouldn’t do it. I have lost weight and maintained it, which is great, but have also needed to have all my rings resized to four sizes smaller than when I was married - although still about 5kg heavier. The arthritic swelling in my knuckles appears to be gone, and I’ve had that since I was a kid. Yoga & meditation also fab!!! (Might stop you from murdering your mother. Yes - mine was vile, too.)
So you know what you’re dealing with, and it sounds like you have some treatment ahead of you. You’ve got this. You’re a smart, brave, tough woman and you’re not alone.

Yerbumsootthewindae · 21/12/2019 23:18

I'm sorry, I have no practical advice beyond what has already been said, but wanted to send you love and strength. Enjoy being snuggled up watching some Christmas films Flowers

cakeandchampagne · 21/12/2019 23:19

The doctors have more information to work with now.
I hope you can relax and enjoy Christmas.
And for your thirsty mother’s next visit: Remember to hide the good stuff. Smile

Icepinkeskimo · 21/12/2019 23:30

Just to give a hand hold OP, you know I was thinking tonight life never turns out the way you think it will when your young. We are full of dreams and hope and joy most of the time. Six years ago I felt a lump behind my ear, it ended up being a tumour. It was pretty advanced as well, I had a long journey ahead surgery, complications afterwards, radiotherapy, more complications and then a long recovery period. It knocked me for six.

There were days when I wanted to give up, sometimes you reach breaking point, but you hang in there and take baby steps. I remember thinking I just want to feel like 'me' again.

OP be kind to yourself, take time to take the small pleasures in life when you can. Cry when you want to, scream when you want to. Be naughty when you feel up to it.

My afternoon of naughtiness was when I walked out of the hospital at 12.30, because for some reason I had it in my mind I wanted to sit in a pub drink an ice cold lager and eat a baked potato!
Funnily enough another lady on the ward was of the same kind, so we escaped! I can tell you this it seemed like the longest walk of my life. My legs didn't seem to work properly but we got there. The food and drink didn't live up to the desire my tastebuds were shot to pieces, but no bother it was just great to be normal for a couple of hours.

I got back to the ward and promptly feel asleep for 12 hours!

Sending you love and a shoulder to lean on, and enjoy your Christmas with your daughter. Never lose your zest, because that will help you so much x

RickOShay · 22/12/2019 10:33

@marymungomidge
Hope you enjoy your Christmas sofa snuggles, sounds perfect to me. Wishing you all the very best.Flowers

chillykiwi · 22/12/2019 10:45

I'm so sorry you are going through this.
I wonder if you are now feeling the melanoma because you know it is there, if that makes any sense. I mean, we ignore niggles and little pains don't we but then when we know they are there we become more and more aware of them?
I'm not trying to dismiss that you are now feeling it just offering some possible explanation based on my own experiences.

YappityYapYap · 22/12/2019 11:06

I'm really sorry to hear about your diagnosis OP. As PP's have said, resting is vital at the moment and staying stress free, especially keeping your blood pressure normal. Looking at things like you have a 1 in 2 chance is probably better than thinking 50:50. If someone told you that you had a 1 in 2 chance of winning the lottery, you'd likely put it on as the odds are really good. Then your odds increase the earlier you put that ticket on (find the cancer early) and your odds increase even more the more you look after that ticket (look after yourself and get treatments). Making decisions now for future treatments will aid you so getting plenty of sleep and staying as strong as you can. You are quite young as well which is something on your side. You are far more likely to be able to endure all the treatments on offer so it opens up all the treatments to you. You say you used to be a yoga teacher as well so I would assume you are quite a healthy person overall so again, something that will aid you in this situation.

Look at the positives here. You're young, you're healthy aside from this terrible disease, it's been caught quite early and you are already making sure you have a good diet and rest. Avoid stress as much as you can. Two weeks off work will be a great benefit but take longer if you can. Do as much as you can that is good for the soul

StartupRepair · 22/12/2019 11:10

OP I was on your earlier thread. So sorry you have this tough diagnosis. You sound like a very brave and strong woman and your daughter may suprise you by rising to it. Thinking of you.

billy1966 · 22/12/2019 11:18

OP, wishing you a lovely Christmas with your DD. You sound much stronger than perhaps you realise.
Making lists and plans can help you feel more in control.

💐

marymungomidge · 22/12/2019 11:21

Oh, you lovely people, thank you! I feel so lucky to be constantly supported by you. Thank you for being there. Icepinkeskimo, you're absolutely right - we go along, don't we, with dreams and plans, till something stops us in our tracks and, before we know it, we are in a different world. Still some dreams and plans, maybe, but very different, I'm so sorry you went through that awful time. I really laughed at the idea of breaking out for a baked potato and a lager in the pub! Fantastic! Justilou, my dear, thank you for the stay-off-the-sugar encouragement - I have just bought some 100% dark choc - no sugar or anything added - fortunately, I rather like it, so that will be my Christmas treat :) Notapizzaeater, thanks for the encouragement re Sheffield. Cakeandchampagne - certainly will hide any future fizz! I felt breaking out the Champagne was an unusual reaction to news of your daughter's illness, but still! Awful old bat, really. She has previous form, so I wasn't completely surprised :) . Yerbum, please get a new name!!! Though it made me laugh, and I really appreciate the love :)
Just been to Sainsbury's to get the Christmas food. Isobel (daughter) was looking a bit sad, so I did a bit of a tap dance (I had no idea I could still remember how to tap-spring and shuffle-pick-up-tip) and sang Rudolph the Rednosed Reindeer in the aisle. I think it cheered her up :)
Home now, and Isobel has just made me a very healthy green juice for lunch. Snuggly afternoon in prospect, with a short walk in the park at the top of my street, a bit of yoga, and a bit more research into diet dos and don'ts.

OP posts:
Nifflernancy · 22/12/2019 11:24

Just came across your thread OP, so sorry to hear your diagnosis Flowers

IncrediblySadToo · 22/12/2019 11:32

I’m sorry you’re going through this 💐

Are your daughters needs mental or physical. If you can tell us more about that we might be able to help you make her less vulnerable too.

Your mum sounds like a right bloody nightmare. Next time she offers to ‘help’ you might be better off saying ‘No thank you’

Definitely let people know ou need help & what you need. Most people want to help if they know you need it and what you need. Support can come from the must unlikely people and others who you’d expect to be there for you often aren’t. It’s odd.

When you look at the odds seemingly 50:50, you need to bear in mind that you are you & no one else! YOUR chances of a good outcome could be WAY higher than that. The 50% non survival rate includes the elderly, people suffering from other conditions and all kinds of things.

Try to sleep - it’s the single most important thing you can do, to give yourself the opportunity of the best outcome!

Take care 🎄🌷

justilou1 · 22/12/2019 11:41

I have to say @marymungomidge, you have really got your shit together considering the stimulus - melanoma and mother (M&M?). Tap dancing sounds like the perfect antidote! Silliness and kindness are really the best kinds of Christmas magic! Well done!

marymungomidge · 22/12/2019 22:58

Hello all, just checking in before bed, and found your lovely new messages :) Thank you - the support you're giving me makes me smile and brings me joy. Rick, Startup, Billy and Niffler - thank you so much for your good wishes, positive words and sympathy - it really does help. Chilly - that makes a lot of sense - maybe I'm just more attuned to the dratted thing, so it feels worse. It's even possible, I think, that there's a psychosomatic element - I know there's something there, so I feel it - but in fact I'm not even sure that it's possible to feel something in that part of the eye. I know some people don't even realise they've got anything wrong till the tumour has grown significantly and started impacting on vision, so maybe ... was going to say maybe it's all in my head, which it is, literally :), but possibly also figuratively :)
Yappity, what a good way to look at it! 50:50 - could be a lot worse, after all. The key thing is whether one has a missing chromosome in the tumour (something known as monosomy 3) - if so, it tends to be curtains, following liver mets; if not, chances are much better. I think the Liverpool eye cancer centre can test for this, so I will ask whether it's possible at some stage to get this done, as I'd like to know. There is currently no cure if it metastasises, though there are one or two things in the distant pipeline, I think, so maybe the trick is to keep going long enough for those to become available. I'll post more about these once I've done a bit more reading. Justilou - ha! I thinkI may refer to the problem as M&M from now on :)
IncrediblySadToo - you said help can come from unlikely sources, and today I found you're absolutely right! At the end of my street is a lovely park - it rises to the top of a hill. At the top is a stone circle and meadow, and you can look out from there and see right across the town to the old castle and the sea beyond. So, I walked up to the meadow today. As I was going, I fell in step with a woman walking her dog, and we got chatting - just as strangers do, sometimes. Well! She told me it was her birthday today, but was spending it alone as she was estranged from her family and didn't have many friends. I think she has moved here quite recently. She said she's an artist and violinist and quite unwell - mental health issues and epilepsy. She asked me how I was - and I thought, well, I'll just tell her! I don't know why - never met her before - but we did seem to hit it off quite quickly and she had an openness about her and a good sense of humour. So, I told her about the M&M, and she was just incredibly helpful and down-to-earth. She told me, for example, that I might be able to get some help from various agencies, and some financial help for my daughter, and gave me her number and address. Turns out she lives just round the corner from me. She also has a lovely dog, and, when I said I wanted a dog but worked away too much so couldn't have one, she said I could borrow her dog whenever I wanted! What a wonderful Christmas friend to find. Two middle-aged women, complete strangers, standing at the top of a hill, hugging, with hearts reaching out to one another, the sea in the distance and the mist rising. I took a pot of Christmas roses round later and left them on her doorstep to say happy birthday / happy Christmas / thank you. With her in mind, and all of you who are supporting me on here, I feel very moved today. Thank you. xxx

OP posts:
IncrediblySadToo · 22/12/2019 23:11

Oh what a lovely thing to happen! 😊

I hope the two of you become very good friends!

I wonder if she’s spending Christmas alone too?

That walk /area/view sounds lovely!

Hope you sleep well x

Beansandcoffee · 22/12/2019 23:22

Thinking of you. Stay strong and enjoy those cuddles and special times with your daughter.

MarthasGinYard · 22/12/2019 23:36

Op I read your other thread

Thinking of you and your Dd

The lady on your walk sounded lovely, isn't it strange how we meet people sometimes?

Huge, huge hugs Thanks

billy1966 · 22/12/2019 23:41

Gosh OP, that is phenomenally moving and delightful to read.

The universe is just waiting for us to reach out, and sometimes we are really lucky and it responds with what we need.

There is nothing more wonderful than meeting a kindred spirit.

Wishing you the very best.. because that is exactly what you deserve.
💐👍

pinkprosseco · 23/12/2019 01:43

I am sending you positive vibes OP, stay strong

notsodimwit · 23/12/2019 05:47

Another one here wishing you and your lovely daughter all the love in the world Flowers

justilou1 · 23/12/2019 14:48

@marymungomidge I just bet you have made your new friend’s day - if not her entire year better. Opening up about her MH issues was very brave. It carries such a stigma, and she was so vulnerable to rejection. It’s amazing how you can bump souls in the most unlikely places at the most unlikely times. I hope her support advice comes in handy. This is exactly the kind of practical advice you need, too!

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