teresa

Hya All

As I posted some time ago, I havn’t been around so much but have looked in on you all almost every evening before I get into bed. I think of you all as my special family.
Pauline keep trying with the councelling if you can, I did it for some 6 months and I think I bored my councellor to death with my anger, but at least I did not offend my friends. These people are here for us. For us to be able to say whatever we wish.
Anger really is part of the grieving process and will happen time and time again.
I now realise when Alan went a cloud of mist came over me, I worked on automatic pilot and it is only recently some two and a half years later that I am able to function slightly better. I say slightly as I appeared to move in different ways, very often forwards and then back again. It doesnt work in a straight line.
I think the pain is unbearable, and only found it eased with the tears.
The pain is getting easier, but the tears still come so easily such as on Sunday as it was his birthday. I was only 19 years old on that special day.

I too have found it difficult with friends and family. They appear to think as it is sometime now since alan passed away I should be better etc. They do not realise a part of me has also gone for ever and I am not the same person as before Alan’s death.
As I am sure you all now realise no-one knows how these things feel until it has happened to them.
I was an avid reader before this and have not been able to read a book at all as yet. I do know now it will come back when I am ready.

At this moment in time I am at the stage of shedding some of the stuff, paperwork, books etc from the past. I feel Alan’s death and caring for my husband (now only 5% kidney function left) has made me realise that we do not need too many possesions to live and lead an enjoyable and peaceful life.

I wish for you all to be able to gain some peace and tranquility along the way and do take care all my love and light to you. teresa Alans mom

Hya Maryann,charlene and Jeff

These things you have written here are so true.
So many different aspects to visualise throughout the journey of cc.
Sometimes it appears that there is time to stop and acknowledge these things and other times it is a case of dealing with the most important issues as they arise.
With hindsight as a carer for Alan I hope he didn’t feel guilty as he did tell me to stop being so angry. I replied to him that I was’nt and he said it was like a light shining from me. I knew I was losing him so suddenly and my heart felt as if it would break into tiny pieces.
He did not push to do more but neither did he pull away from his friends, they were with him night and day. His friends were coming to see him and turning away in tears at how quickly his body had deteriorated. I had to help them out to sit on the garden wall and tell them it was ok for them to be like this. Two days before he walked up to his dad put his arms around him and said”dad I love you”.
I feel so much love for you all and I to wish I could be nearer physically to all of you, but I am sure here in my mind allways.
All of us,patients and carers alike I am sure do the greatest feat of our lives.

love and light to you all teresa.

Whilst I am here, an update on my husband of 49 years. Not CC.
He now only has 5 % kidney function left.
This is due to having diabetes for 55 years (2injections every day)
He is now in the final stages for as long as his body holds out.
He has been very sick of late and I have been told it it may only be weeks or months, but not many. I am truly a broken woman but have to do my best as a carer once again.
If I am not here for some time please forgive me, I will be thinking of you all.

Dear Darla
I am so sorry about the loss of Jim. So hard to bear, such pain,
so many tears.
I too lost my son Alan in just 8 weeks, so swift and sudden.
No time to catch a breath, no time to think, only just do.
The seasons change and I often ponder about how some go so quick and others linger much longer.

So many more at this moment in time, all with memories and so many what if’s.
We are all here at any time to read, write and respond.
Tied together for ever, what is it that makes this cc so unique.?

My love to all at this sad time love and light Alan’s mom

Hya Jeff and all

I feel so priviliged to be able to read your work in this area of your life whilst you are facing such a challenging time.
I too have been trying to work through challenges to my faith and reality.
I wish you hope, joy and love during this phase of your life.
It will be really interesting to see where this takes you on your journey.

I have been lurking on the site as a guest most days, but feel I cannot give help in other areas as we did not have an opportunity to try any of the many ways of dealing with CC.
One of my wishes was that my Alan could have joined this site, for I know he would have had much to talk to you about. He said his motorbikes were his God, but he loved the world and loved nature in its raw state.
One particular dark night when he was ill, a friend called to take him out.
As we opened the front door he suddenly said mom don’t step outside.
He bent down and gently picked up a very large frog and put him on the garden wall. Whilst he did this he said ” there you go mr frog go and join your friends you will be ok.” I can still see him standing there doing this.

love and light Alan’s mom

Hya Jilly

To lose your mom is so hard to bear. I think all of us at some time in our lives know something is not quite right.
Alan told me this is how he felt when he first approached the doctor.

Your mom knew this and left you some letters and instructions to try and ease the grief for you and the family.

She loved you so much, that is why she did it. take heart from her thoughts of you.

We, on this site need everyone’s story to be told for each has its own process. Non appear to be the same, some with similar aspects but never in the same manner.
We as carer’s also process these things in a different manner.
It will only be from such a site as this where the reality hits home and that hopefully a cure in the future will come about.
love and light Alan’s mom

Hya Pauline
Yes, I agree it is really heartening to see something concrete surfacing for the future.

We had to deal with so much ignorance whilst alan was ill. As I have pointed out, we are dealing with people within the NHS who say they know of this but when the letters come back to us it is apparent they have no knowledge of what they are writing about.
At my last visit to one of these hospitals I felt so pleased with the progress that had been made, and I was feeling so confident steps were going to be put into practise to help patients in alans situation.

I am a qualified councellor and homoeopath and have realised my training is helping me to come to terms very slowly with the situation and one day I will be able to write alans story.
During his last week he said “mom when I am gone tell everyone my story, I am really happy and loving my life.”
I also agree with many people that I am so angry. Yes, I am and I feel that I am entitled to be this way until it subsides. It will one day I know for sure.
love and light to everyone alan’s mom

Hya Liz and all

Liz you were a great daughter, I wish I had someone like you right now in my life.
I too feel this is the place to be where we can share our grief and our memories. This disease is one that not many people have ever heard of let alone experienced.
I love to read how you talk about your mothers, from this I am able to realise alans reasoning behind the fact that he asked me right at the start would I take care of him at our home. He did have his own place to live in.

I have been printing all of the messages I have put on this site, also the replies to go in my memory box for Alans life history. One day I hope to write a book about his life and what he achieved.

I would like to thank you all for being on here. For helping me, to put into words things that others close to me are not able to understand, to come to terms with my grief and sharing your stories with me.

Kate, your moms book is available on amazon .uk. for about

Hya Terri

I feel so sorry that you are having to go through all of the heartache with the loss of Michael. I see that you are coming to the one year mark. The pain that we feel when we loose our loved ones is so raw.

I note that Michael was diagnosed in Jan o6, my Alan was still working but had a slight pain and some acid, certainly nothing to worry about.

Became really poorly at the end of Feb. and not diagnosed until March and we lost him at the end of April 06. It was all so quick and with so much shock.
I too come here every evening, this place is so special for me. I know everyone on here understands what has happened.

I feel that I know these people, especially with the photos.

love and light Alan’s mom