I have learned the hard way...: That there... - Macular Society

Macular Society

4,025 members2,068 posts

I have learned the hard way...

Hidden profile image
Hidden

That there are much worse things in life than AMD. I have been diagnosed with stomach cancer. The outlook is grim. I may have 3 weeks, three months, 6 months, a year to live? No one can say.

My eye condition has become totally irrelevant to me. So when you are feeling down and depressed, remember - there are always people worse off than yourself. I may not post again on this site. So, I say good-bye to all my dear longstanding friends on this site. Remember Squinty? She had to walk this path before me. Would love to know what has become of her.

xxx

49 Replies

To Dear ayayay

You are a wise wonderful person who has inspired me to deal with my CNV. Your kindness and advice has been invaluable to me and I'm sure countless others on this forum and I'm sure you are a great friend to many in your life.

Your post is shocking and a reality check. Yes we must all value every single day we are on this planet and spend it with those we love as I am sure you will.

I hope you get the very best of treatment for your stomach cancer and knowing what a fantastic spirit you have, you will fight on and make the most of your future even though it is uncertain now.

I send you my love and all the best wishes in the world ayayay. I feel very sad writing this and feel anything I write is inadequate. Keep fighting on lovely friend.

Xxxxxxxxxxxxx. 2468G

Hidden profile image
Hidden in reply to 2468G

I thank you so much for your reply. I know it is hard for anyone to know what to say. Your kind words brought a few tears to my eyes. That is good, because I have not yet been able to weep and ease the stress. I am still numb. Thank you dear friend. xxx

2468G profile image
2468G in reply to Hidden

It's good to have a little cry ayayay. If I helped you to do that I'm glad. I tend to speak from the heart. Some people like that and I'm glad you are one of them. Xxxx

Dear Ayayay,

You must be feeling very bad and I am so sorry to hear this news.

Years ago I worked in the NHS and we used to find that older people seemed to carry on for much longer than the young as all growth- including cancer- seems to be much slower. I do hope this is the case for you and I do hope you will keep in touch on the forum and let us know how you are. It's sometimes easier to write things here than to say them to those close to you i think.

I have said a prayer for you,

Rosemary xxx

Hidden profile image
Hidden in reply to rosyG

Thank you Rosy (almost my namesake except that my name is spelt Rosemarie).

And yes, writing is probably easier than saying what one you feels. Although I have always been a very quiet, private person, keeping my inner thoughts to myself despite having a very large circle of friends and acquaintances, I now feel the need to tell the whole world of my woes. A cry for help, I suppose!

rosyG profile image
rosyG in reply to Hidden

It’s very cathartic and also an excellent way of getting some practical solutions because there’s always someone who has had the same experience . I’m wondering if there is an oncology forum on HealthUnlocked . I’m writing this on my phone so can’t look it up just now.

I wonder too if some of the new treatments would be helpful for you. They have something to target just the cancer cells. Some of the previous posts about pressing to be referred might be relevant here.

Please keep posting. I have access to the RSM library and databases so if you want me to look anything up do let me know xxxxx

Hidden profile image
Hidden in reply to rosyG

Thanks Rosy. Will do.

I am so sorry to read your post. I have COPD in my lungs and AMD in both eyes but am very grateful to be where I am. There are indeed always people worse off than you and I am sharply reminded of this when I attend my clinics and see others, especially young people, who are struggling so badly.

Thank you for your brave post . I do hope and pray that your remaining time will be as comfortable and peaceful as possible.

Best wishes and thanks for your post. Sincerely, John

Hidden profile image
Hidden in reply to Tetrazzini

Thank you so much John. I eagerly read all replies as if in a last attempt to hang on to all I have known to hopefully give me strength to face what is ahead of me.

Hidden profile image
Hidden

Ayayay A terrible shock, I can empathise as I was diagnosed 25yrs ago with a form of eye cancer. 50% die within 5yrs but 50% don’t.

I am still here!

There is no curative treatment for my condition if it metastasises (develops secondaries) it is terminal but there are now some effective palliatives.

For your cancer there are, I believe, effective treatments. Do not give up on the situation, there are improved treatments appearing frequently now.

Research the appropriate centres. The Christie in Manchester is outstanding as is the Experimental Cancer Centre at Southampton General Hospital run by Prof Christian Ottensmeier which is where I attend every 6 months.

As a cancer sufferer you are permitted to self refer although it will need your GP or other appropriate medical professional to initiate the process.

Do get a second opinion, it is your entitlement.

As an American lady commmented a few years ago “You don’t fight cancer, you fight for the treament for cancer.”

It is a steep learning curve, research the online facebook groups and websites.

DON’T give up on it, we need you here!!

Best wishes

Keith

Hidden profile image
Hidden in reply to Hidden

Thank you very much, Keith. I have been looking at a large number of sites to gain as much information as possible to help me decide my treatment if I am given the choice. I'll find out from my cancer team mid next week what their recommendations for me are. If all fails I will certainly consider trials. Will also make a note of the 2 cancer centres you have mentioned to me. thank you for that. I will fight to the end.

Dear ayayay

You have been such a support and inspiration to myself and all on this forum and I have been wondering lately where you have been - so very sorry to hear of your devastating diagnosis. I cannot put it better than 2468G already has so just send this with great appreciation of your love, kindness and generous spirit. I hope you receive the care and support you truly deserve.

Jenni x

Hidden profile image
Hidden in reply to Jayral

Thank you so much.

To have done some good in the past in an unsettled wicked world is comforting to know. And I will fight tooth and nail to stay in this "wicked" world for as long as I can, though some things are beyond our control. Bless you, Jenni.

I send you love and light xxx

Dear ayayay,

You are a brave soul and you must remain so! Please make sure you go forward now with seeking out a second opinion. Treatments vary and all options must be offered to you. There is so much progress made in cancer treatments today, that you must take the initiative to find out for yourself what is your best shot at meaningful treatment.

Stay positive!

You are in my prayers and please stay present on this site and let us know how you are doing. We are with you, friend!!!

Getwell89

Hidden profile image
Hidden in reply to Getwell89

Thank you so much for that. It is almost easy to be brave when the only other choice is to fold up and give up. I will get more information from my cancer team next week to see where we go from here. Meanwhile, I am trying to keep myself as well and as fit as possible. It is so nice to be called friend on this site, as that is what many of us have become over the years. Again, thank you.

Your message was a hard hitting reminder about perspectives. A brave one to write. Thank you dear soul xxx

Hidden profile image
Hidden in reply to Dipper2

Thank you, dipper for taking the time to reply to me. We never know what is waiting around the corner for any of us. It is what it is and time will tell. Bless you.

Dipper2 profile image
Dipper2 in reply to Hidden

You are so right. But you sound like a fighter with a positive mind set. Never underestimate the power of that. You will be in my thoughts and prayers daily xxx

Oh Ayayay, I'm crying for you x Sending the biggest hug ever and another whenever you need one X.

Life seems so unfair at times but whatever your journey holds for you in times ahead I know that the mere fact of your existence has made a positive difference in the world already. And your warm support on this site has been invaluable to me personally - for that I thank you deeply and hope that fate treats you kindly as you move forwards.

I hope any treatment you are able to have improves your daily life and that there is no pain XXX

I too often think of squinty and should we not hear from you again you will forever join her in my thoughts. I will say goodbye now my friend in case this is your last post but hope that we can continue to support you if you need us. I know you must be in shock right now and things look bleak and of course you must find a way to come to terms with it but please don't lose all hope that you cannot find the small joys in each day, however many remain. You are so brave to share with us this reminder and I will strive to recall it every day. Thank you XXX

Jayral profile image
Jayral in reply to eyesright

Eyesright, Squinty and ayayay - 3 of the most inspirational people who have made this great supportive and practical forum what it is. Thank you and best wishes wherever you are on life’s journey

X

Hidden profile image
Hidden in reply to eyesright

Dearest eyesright.

Over the years you have become one of my closest friends on this site even if we have never met. I thank you for that. At present I still feel reasonably well, did a 6 mile walk last Sunday and hope to repeat it next Sunday to keep up my strength and physical fitness which has suffered greatly in the past 4 months. My energy level is not that great at present.

Next week I will be told what my cancer team's recommendation is for my treatment is and then I will ask more questions. I then have to decide what I want. The cancer nurse has already told me try to put on as much weight as I can; at 7 stone 2 lb I cannot afford to loose much. Eat, eat, eat all day in small portions even if I do not feel like it, which I don't but I force myself. I am lucky I have my son living with me who is very caring and supportive.

Well, my friend, that's all for now. I will try to post again.

eyesright profile image
eyesright in reply to Hidden

You keep going girl!! I recommend ice cream for putting on weight - you can usually find an ice cream van at the end of a good walk lol x Feel free to message me anytime x

Devastated. You have helped so many of us through our fears and terrors. We are all here for you. Good luck and God bless you. X

Hidden profile image
Hidden in reply to Patjo

Thank you, Patjo and bless you. I don't know what else to say that I haven't said already. My head is beginning to feel a bit empty.

Hidden profile image
Hidden

I was so saddened to hear your news, and it came as a shock to me, so I can fully understand how much more of a shock it was to you. As many here have posted, you have always been so kind and thoughtful to all of us, and for that I thank you. You know where we all are if you ever need us. This site will always be a better place because of people like you. God Bless. xxxx

Hidden profile image
Hidden in reply to Hidden

Thank you.

I dont often post but do read everyones posts. You have been an inspiration. So often with just the right thing to say. I am at a loss what to say to you. So Blessed Be, much love & good wishes.

Hidden profile image
Hidden in reply to cormorin

Thank you cormorin. There is no need to say anymore. At present I am still feeling reasonably well. It may all come to a head suddenly or it may take more time. It all depends on the treatment I am offered next week. Bless you, cormorin.

cormorin profile image
cormorin in reply to Hidden

I will be thinking of you & will light a candle for you.

Wish I could do more. xx

Oh, Ayayay, so very sad to hear your news. I have been wondering how you are, not seeing you on the forum lately. I concur with all the comments that have been made. You are among those that make this forum a pleasure to be part of despite the horrible conditions that bring us together. Sending you love and hugs x x x x x

Hidden profile image
Hidden in reply to Bobbie915

Thank you.

My thoughts are with you Ayayay. X

Hidden profile image
Hidden in reply to Mrdg

Thank you.

I am shocked and also so very sorry to read your post. I also feel very ashamed at how much moaning I do about my AMD and other ailments which I have, in comparison with yourself. I do hope things may not be as bad as you think and my thoughts will be with you. You have contributed so much support in this forum and I thank you for it and now I must try to be more positive in future.

Sending you love.

xxx

Hidden profile image
Hidden in reply to pinkperfection

Thank you so much.

Well, pinkperfection, sometimes we need to see other peoples problems to realise ours are not so bad, though to us they are bad enough at the time. And to think that others are worse off does not always work. We learn to cope and in time things may not seem so desperate, whichever way it goes. All the best.

pinkperfection profile image
pinkperfection in reply to Hidden

You are very wise and so positive. I trust I would be the same in your position.

Thank you for your thoughts.

I am sorry to learn of this new challenge you must face. I hope that you will find faith in God to be a help as I have. Many in my family have faced cancer. Prayed for you today.

Dear Ayayay, I want to send you a huge hug and for you to know when you have your appointment next week, as well as your family and friends at home, there will be lots of people on here, thinking of you. Thank you for all of the thoughtful reflection and advice (I read much more than I write!). It has made a difference to a lot of us. Good luck with everything, Sarah 🌷

Bless you. Whatever choices you make as far as treatment and care - May your journey be peaceful. I have been a nurse for 40+ years and have accompanied many on this path, sometimes as they leave this earthly existence, it was a privilege to do so. May you be surrounded with love, and if you leave us, may the choirs of angels come to greet you and carry you home. youtube.com/watch?v=xk26aMc...

I want to say thank you for sharing your news as awful as it is. We have spent so many years not talking about cancer and people feeling almost embarrassed to be open about having cancer. We’ve come a long way. So much has changed in the last decades regarding treatment and I wish you all the best for your future.

With my own experience of cancer I found the help and support of my on-line friends really helped carry me through the rough times. My dear friend, also with stomach cancer and given a very bad prognosis is having a new trial/treatment at the Royal Free in London - no cure but lots of good results and about 5 years on now - they send a car for her every 3 months and she is doing well. Try and find a trial and get on it - and meanwhile let us all carry you :) xxx

Oh my dear friend, such heart breaking news! I wish I had met you in person as I feel I know you a little, you have indeed been such a friend to so many of us, with you advice and wise words.

I do hope that your journey now will be comfortable surrounded by the love of your family.

Thinking of you with love

Ann xxx

Dear Ayayay, I very seldom post but felt that I must today. Very sad to hear that you have this extra burden. Remember even in dark moments that you are still alive so live life the best you can. All is not lost your treatment is yet to be determined. You have helped so many of us with timely advice in the past now it is our turn to give you a boost. Please let us know how you're getting on. Hang in there. Will be thinking of you

So sorry to hear of your predicament Ayayay; I and so many others on here have been helped so much from your replies and put our minds at rest about eye procedures. I do hope they find a way to cure you so that you will be with us for a long time to come. So many new cures coming out now and trials going on every day. There's always hope. Love and Light, Mike.

Hidden profile image
Hidden in reply to MikeG1944

Thank you, Mike. I will be seeing the surgeon tomorrow and, hopefully, find out what his plans are for me. Its been 6 weeks since I went to my GP, but since my gastroscopy just over 2 weeks ago I have been put on fast track. Had a number of tests done. Not long now before I have to decide. That will be my hardest decision I have ever made. Anyway, what will be will be.

MikeG1944 profile image
MikeG1944 in reply to Hidden

You know that we are all behind you on here; hope they can find a cure for you.

I am so sorry ayayay. I hope you'll be well looked after. You are right indeed there are so many people much worse of than say me with wet AMD. And indeed I'm always telling myself this. People like you help us get it in perspective. Thank you for sharing. I wish you the very best and am so upset for you, and hope all goes as well as possible xxxxxxxx

Hidden profile image
Hidden in reply to fed13

Thank you so much fed 13. I will be undergoing exploratory keyhole surgery on Thursday to see if the cancer has spread to the spleen or lymph nodes. Once they have got the result they will decide what treatment to recommend for me.

Odd, isn't i; I have an appointment for the eye clinic for scan etc. I felt like tearing the letter up because there seems so little point, but I suppose I will go and not throw the towel in just yet. Its hard, fed. The emotions sway from one extreme to another.

I would like to thank you and all the wonderful people on this site who have answered my post and helped to lift my spirits a little.

Bless you all.

You may also like...