ayayay's update: Had to postpone my latest... - Macular Society

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ayayay's update

30 Replies

Had to postpone my latest scan and eye test because of my other health issue. My vision is rather a bit dodgy and I feel I am walking on the clouds.

For all of you who gave me your caring support, here is a short run-down of what has happened to me. I am now minus stomach, minus spleen and minus part of the pancreas. After 16 days in hospital and now 16 days back home I struggle trying to eat. Its tough but I will get there in the end. I would just like to say how much you helped me. Thank you.

30 Replies
rosyG profile image
rosyG

lovely to hear you have made such good progress AyAyAy- sorry about the eyesight. I was wondering how you are eating now- so we can make some suggestions!!

in reply torosyG

Thank you rosyG. xx

After 2 weeks of being mostly intravenously fed I have now been able for 2 weeks to take soft, mushy food by mouth. It is all a case of trial and error what suits me best, what I may like and what I can tolerate. There is no hard and fast rule to what menu to follow as long as I keep taking in good nutrients little and often.

It is quite possible that my woozy vision is as much due to the trauma and blood loss my body went through as to my AMD. It will come right in time,

rosyG profile image
rosyG in reply to

Well done! We used to use complan when I was nursing. Probably been superseded now but it did work well then! Do keep posting . It’s great to hear from you.

StokeySue profile image
StokeySue

Good to hear you are back home, sounds as if you are doing pretty well to cope with such major abdominal surgery, I hope they have given you some support in choosing what to eat and how to eat it, if not, demand it

Take it easy, and follow the advice the professionals give you

in reply toStokeySue

Thank you StokeySue

The Op turned out to be even more massive than was at first anticipated. The first 5 days after the op were quite horrendous, wondering if I could survive. Well, I did survive so far.

For all my team's support and advice, the going is still tough and will be so for a few more months. But it is all worth it if they are right when they say the cancer is gone.

Lovely to hear from you! Xxx

Glad the surgery went well, stick with the eating plan, slow and steady wins the race x I hope you can pick up with the eye exams asap, will they send transport for you there and back?

Sending you big hugs xxx

in reply to

There will be no transport to the eye clinic arranged for me, but I will ask one of my friends to take me there if I cannot travel by bus.

The op and the 5 preceding days were quite something. I intend to write about it when I feel better. At the moment it is still tough going.

Bobbie915 profile image
Bobbie915

Great to hear from you Ayayay. So pleased to hear that the surgery is done and you are back home.

Bobbie915 profile image
Bobbie915

Great to hear from you Ayayay. So pleased to hear the surgery is done and you are back home. I know eating will be a problem but I bet you will crack it. Please let us know how things progress.

Big hugs and take care. x x

Annsandra13 profile image
Annsandra13

Hi dear Ayaya,

Just to say I’m thinking of you, hoping you are finding a way to eat and keep your strength up, sending you love and healing.

Ann xxxx

2468G profile image
2468G

Hello ayayay

That sounds horrendous. I so admire your strength and determination in getting through such a major surgery. Of course you will be struggling to eat, the surgery is a shock to the system. It will be a time of adapting for you but I know you will come through. Keep fighting on lovely lady.

Best wishes for your recovery ayayay. Love G

in reply to2468G

Thank you, G

Yes, there is a long haul ahead of me. And although I know that my life will never be quite the same again, I hope there Is still a lot of living to be done. My surgeon called me a miracle. Maybe I can work a few more for myself and all my wonderful friends. Best wishes to all. xxx

You are an example to us all with your courage and determination. I am pleased to hear that you are now back home, and now is your time of adjustment. It is good to hear from you, as all of us on here are thinking about you, and, as you can see, we are all pleased that you have posted. I hope that you are able to get to your eye appointments soon, and that everything goes well for you there.

Love Susan, xxxxx

in reply to

Thank you for your kind words, Susan. As for my courage - I would not be too sure. A few hours after the op I believed I was dying and that was not too far from the truth; and what is more, I wanted it to end. Although it is still a struggle I am improving steadily. I intend to to write about this horrendous, sometimes surreal experience; the memories are still fresh in my mind.

Best wishes xxx

pinkperfection profile image
pinkperfection

It is so good to hear from you, I was only wondering about you the other day. You have had such a hard time and I am full of admiration for your bravery and resilience. Keep fighting and keep us posted about your progress.

Ceri2 profile image
Ceri2

Hi Ayayay, It’s good to know that you are back at home. I’m sorry that you have had such an awful time. Will be thinking of you and hoping that by the time the sun comes out you will be feeling a bit better x x

MikeG1944 profile image
MikeG1944

Glad to know you're home again ayayay, take it steady and I'm sure you'll get there. Healing thoughts being sent.

Mike.

in reply toMikeG1944

Thank you Mike

Bungobunty profile image
Bungobunty

Hello Ayayay , I have so much respect for your strength and courage to go through such a massive operation. So happy you are home and hoping you can find something to eat to give you the nourishment you need and the strength to move forward . Hoping when we eventually get some 🌞 sunshine you are able to sit out and enjoy it . I know with your positive attitude you will face each new day knowing it's a step nearer to your recovery. Looking forward to hearing more about your journey and recovery. Sending love and healing your way. Xx

in reply toBungobunty

Thanks. Will keep in touch. xx

springcross profile image
springcross

Hi ayayay. So glad to hear from you, been wondering how you are. You really have been through the mill but from what you say, things are on the up. Struggling to eat is quite understandable after what you have been through. I agree with rosyG about Complan, it always was good stuff and is still sold - Boots sell it I understand. Also soups and smoothies are nutritious - little and often. Sorry to hear you have had to postpone your eye scan and test, hopefully you will be able to have them when you are feeling a little stronger. Wishing you strength and good healing. Take care of yourself and keep us informed. All the best. xx

in reply tospringcross

Thank you for your reply. My dietitian spoke to me on the phone for over 1/2 hour, giving me lots of useful advice. She will be sending me a number of samples to choose from, some of them I will be able to get on prescription as I have to take them for the rest of my days. My diet at present is quite complicated and can never be quite the same again. But things will get better as time goes on. All the best. xx

alalex101 profile image
alalex101

You are a survivor! Praying for you.

in reply toalalex101

Thank you so much for that. xx

Hammiepaeroa profile image
Hammiepaeroa

We have all been thinking of you ayayay and now the worst has passed look after yourself and get your strength back. You are such an amazing person who gives us lots of hope by reading your articles. Keep writing letting us know how you are getting on. X

in reply toHammiepaeroa

So kind of you! Time is a great healer though it cannot heal everything. All we can do is try our best. It goes a long way.

Best wishes xx

Patjo profile image
Patjo

So good to hear from you ayayay. What can I say that has not already been said! You have the complete love and admiration of us all. May your road to recovery get smoother each day xxx

in reply toPatjo

Thank you so much, Patjo. Things are already getting a little easier, though it is still a bit of a struggle. I will just have to be patient. The support from this forum has been a great help to me and I would like to thank everyone. xxxxxxxxxxxxxxxxxxxxxxxxxx

Getwell89 profile image
Getwell89

Hi Ayayay!

I admire your strength and courage, facing what you faced. You have an impressive attitude in the midst of these challenges. Just by reading your various responses to others on this blog, you give me inspiration. You, in your suffering on the way towards healing, offer many of us who read your words, a clearer insight as to the benefit of inner strength and positive thinking.

May each day find you improving in health. Slow but sure, and you will get there! Thank you for your fine example!

Continue to let us know how you are doing.

in reply toGetwell89

Thank you so much for your kind words. I think that we all will face what has to be faced. Best Wishes.

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