I have been diagnosed with a tumour. I have just spent a few weeks in Hospital with the doctors trying to insert stents so that I would be able to go home and spend the last few months of my life with my kids and husband. I am not suitable for an operation to rid myself of this tumour due to complications of Portal Vein thrombosis. I was also born without a spleen (not that, that has made a difference in my life). I have two stents one metal and the other plastic. I don't know how the doctors managed to get the second stent in but wow what a difference, I had been so jaundiced. (Still Jaundiced but not as bad).
I became ill this year, more tired less energy. I had a scan that found the tumour, this was followed by itching, then yellowing of the eyes, and mouth. This then turned into full blown jaundice, itching, yellow skin, and eyes. Following this lack of energy, then loss of appetite. Tests showed the tumour has grown to twice the size, and then the news that I couldn't have an operation. I spent 3 weeks in Hospital seriously ill before the stents were inserted, they said that my liver wasn't draining at all, and was like a stagnant pond. eww. Now that they have managed to do the stents I have been home for three weeks and feeling like myself again. Although I brave going out in the community because I am Jaundiced, people tend to stare which I find very embarrassing, being female I think it makes it worse. I still go out for coffee's with family, and to the supermarket with my husband by my side.
I think getting through dying has been made easier because I have been given some time by the Doctors to spend at home with my family & friends. The support from my Husband (He really loves me) :) has been amazing. I feel safe, and know that the bad stuff is to come, but am enjoying every minute of being a wife and mum to my kids. I have been enjoying being at home, I have had more energy and managed to do a bit of washing the other day. My Husband has been sooooo incredible, he has taken time off to look after me. At the moment I am getting on with life doing all the normal things, I don't have a "bucket" list, as I feel that all I want to do is the things I would normally do, watch tv, spend time in the garden, play PS3 with my kids, chat to my friends & visit with family. I hope for the future that medical science can find better ways of managing PSC, and wish everyone on this site all the best. It has been a pleasure being a member and reading all your stories. Thank you all :) Ellie.
I’ve read this Ellie in tears. You are a brave and strong woman, no wonder your husband loves you so much! I just wanted to say you’re in my thoughts…continue to be strong lovely lady. God bless… Xx
It sounds like you are a really strong person. That is a hard thing to face and I can't possibly imagine what you are going through. You and your family are in my prayers.
Stay strong! God works miracles. Sending up prayers for you.
I'm holding back tears as I read your note. Enjoy the time you have left.
Your good deeds and good values will live on through your husband and children.
LOVE YOU ELLIE
I'm sorry IF this is an IGNORANT question but what about a transplant? Is that what you meant by 'surgery?' Bless you! I hope you get to do all of those things and more: mona
You're a brave and wonderful woman Ellie. My thoughts are with you.
You’re in my prayers Ellie. Astonished at your bravery and positive attitude. God bless!
God bless you and your family, Ellie. Thank you for sharing this. Prayers:)
Ellie, I, too, am sobbing - right in the middle of a Nice n' Easy mini mart! I was trying to be all quite, and thought, "What would Ellie Do?" - so, I let her loose!
Bless you for your life, your sharing, your love given and received, and the mark you've left upon the world via your time here and your children. You are obviously one hell of a woman - getting true heart and soul love from a mate is not always easy... He is a lucky man to have you in his life.
Enjoy whatever gift you have of time left - I am praying to Goddess for you for the feminine energy is strong within you, and will continue to be needed. I love you for your sharing and your tale... Bless your beautiful life here!!!
Ellie, I am so touched by your story and the way you tell it. I send you my blessings. You seem like a very peaceful, calm and loving person. Much love to you and your family from across the Pond, Dana
Ellie, i read this and started to cry. Sending you strength and love. You will be in my prayers. I hope they find a cure for this awful disease. Barbie
You so truly know what is important
You are truly amazing. The WORLD could learn from you. There are so many people with LESS than we have that are HAPPIER. You just want to hang out, go out in public, play with the kids, talk to friends, chat over coffee and appreciate your husband. SOMETHING so many people get to do every day but take for granted. People get bored, say they are unhappy, in a rut, falling out of love...YOU HAVE IT! Seems like a waste...you deserve and you are losing.
I say...hang in there. I don't think the doctors can say we are dying. They don't call GOD. However, whatever you do or don't believe in, you could get better. Take care of yourself and love on that family. I wish I was there to give you a HUGE hug and kiss...everyday. LOVE YOU: mona
Thank you all for your kind words. I am still at home enjoying my family and friends. The stents are working and I am less jaundiced… yeah. I am hoping to see in the new year if all goes well. Thanks again!! Thinking of you all too. Ellie.
How are you doing Ellie? I just wanted to say hi.
How are you Ellie? Love you and that LUCKY FAMILY of yours.
Hello Ellie. Checking in...