jclegg
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Ashlea,
I have nothing new to add, I just want to say that 2nd opinions are SO impotant, especially with this cancer. CC is rare enough that doctors often don’t know much about it, and it is important to get a doctor that DOES have some experience with it. I believe that is why Marion is recommending the Doctor in Toronto. Best of luck to your dad – and you. What a caring, loving daughter you seem to be – your Dad must love you so much.Joyce C.
David,
We will wish for good results from the pet scan. As for explaining feelings – this is the place to do it. I don’t know what I would have done w/o this site, both as a source of information, and a place to express my feelings. This, along with our blog, allowed me to do just that. I guess whether we are caregivers or patients, we all need to express ourselves. I don’t know what I would have done w/o our blog, as it allowed me to collect my thoughts, leave a record of our trials and tribulations, and to express myself. I found it to be SO therapeutic.
Joyce C.
Hey – Darla and Heather,
All this talk about tatoos is making me nervous – I like the little pictures – especially if they are dainty, but just the thought of getting one scares the bejeebers out of me!
Heather, I am glad to read you and Lee are going for another opinion – you both sound like you have a lot of FIGHT, FIGHT, FIGHT left in you, I am glad to hear. I continue to Pray for you.
Joyce C.
Mary,
That is wonderful news – 2 great news events within a couple of days – we all needed this. I am so happy for you both.Joyce C.
Hi Jeff,
Butch was on dilaudid and it worked wonderfully well for him – almost no pain. I can’t remember why he couldn’t use the fentanyl patch, but he couldn’t, and the diludid did the job.Joyce C.
Hi Sue,
Such wonderful news – it does make the rest of us feel good, too. Two years is quite a milestone. We need uplifting news, and rejoice with you. Darla is right – cake – and ice cream – would be in order!Joyce C.
Hans and Kris,
Keep your spirits up, and think positive thoughts. We will all be thinking of you and praying for the best.Joyce C.
Hello Friends,
I have something to shar with you all! Last week my assignment for the bereavement group was to write a letter to Butch. Even though I talk to him every day, kiss his picture, etc., I have not wrote him a formal letter before this. So I did, and it was very cathargic. Somehow, writing him a real letter made him, our life together, and our relationship now seem more real. Anyway, I mentioned our deal – that he let me know he had gotten there, and asked if he could let me know one more time. The last sentence said “I would like to dream about you”, because I don’t – or – I don’t remember the dreams when I wake up. I figure that – even though it will be sad – waking up to reality, I could at least see him in my dreams. Well – this morning – just before waking – I saw him in a dream! We didn’t talk, and I don’t remember much, but he was there – standing beside my parents in a line, a few feet way from where I stood in that dream. I couldn’t see his face clearly, but – he was there! I believe that he came to me in that dream because of my request, and I am so grateful. Our loved ones are watching over us, and – even though I am sobbing as I write this – what a comfort to know that. They really are just “in the next room”. Even though I say that quite a bit – I am not sure I knew what it means, and , as time goes by, Butch seemed further and further away from me. This has brought him back to me, and I feel so much better.
So, this is a message of hope – proof – to me – that, in our future – when the Lord decides it is our time – we will all be together with our loved ones again, and, in the meantime, that they are indeed watching over us and our lives here on this earth.
Love,
Joyce
Hi Everyone,
I am so glad to see that we are going to try somewhere else – I was SO disappointed that nothing came of the Opray letter (yet, that is). It is a great idea to send them off – to Ellen first, maybe , but – Barbara Walters is another great choice. I, too, cannot imagine that anyone reading those letters would not at a mimimum acknowledge – perhaps they are backlogged, and didn’t even get to them yet?? At any rate, Lainy – thanks for organiizing this effort.
I had also noticed the increase in new members, and hope that this means increased awareness, It is so wonderful to know that people have this forum to come to when they need it. Like Darla, I don’t know what I would have done w/o all of you. Without the vision of the originators, we would all be stumbling by ourselves, so – hats off to them!I also see more and more people sending in pictures on “Faces”, and read through them every once in a while, just to remind myself of the struggles that CC patients and their families face so bravely.
Joyce C
Suzanne,
So happy to hear your good news – will be waiting to hear further good news from you.Joyce C.
Hi Jeff,
I am sorry your news was not better, but have hopes that something else will crop up to help you – a result of your research, maybe – and will say a prayer to our lord to be with you in your search.Joyce C.
Oh, Patty, why does life pile on so? I hope this works out well for you, and that it is a good move both for both your little brother and for you (I have a little Brother who is 18 years younger than I am). Moving into your Mom’s house certainly sounds like a sensible solution , but , when we are in this grieved state, any change is difficult, and requires real effort, doesn’t it? Remember – we will all be thinking of you, and you can come here and “blow off steam” anytime – it helps me so much to have someplace to turn to where everybody understands. This board, and – particularly this thread on this board – has been a lifesaver for me. It is hard to believe that other peole can be so insensitive, isn’t it? Particularly people we are close to. Ah, in the end , we are all only poor humans, aren’t we?
love – Joyce
Kris,
just want to say I will be praying for you. We will all think positive thoughts and send them your way – stay strong.Love,
Joyce C
Hello Friends,
I know what you mean. People get very uncomfortable if I even talk about Butch – just to say something simple – like the fact that he wouldn’t have liked that movie I watched last weekend – no grief attached, just a mention of his name. They don’t like it – don’t know what to say. On the other hand, I usually do put on a brave face, and people – my boss in particular – thinks I am over it, and should be back to “normal” – meaning functioning at top speed at work. (he doesn’t know I was NEVER normal!). This is very,very difficult, because I am NOT back to normal, and probably never will be – just trying to fill in the hole that was left in my heart. It IS wonderful to have you all to talk to, and listen to. You really have become my close friends, and it does help, doesn’t it? I am so weepy this morning that I would like to just stay home – but – have a big meeting today so I can’t. That’s the problem – Working is good for me because it takes my mind off my loss, BUT – I have a hard time concentrating, and there are too many hours – I think I worked about 48 hours last week, and I guess it is too much for me.
Well – enough steam-letting off, I guess I better hit the road!
Love – Joyce
Hello All,
Just checking in to tell you that I am still here – sad, but here. I brought work home and am working on it – trying to keep busy, also, Paula – it seems like the only thing to do right now. I tried to take Flash for a walk, but it is too cold, and he had a fit – we had to come back home! I have gone to two of those meetings for the support group now, and I can’t tell if it is helping – it does make me realize that we are all in the same boat – grieving, lonely, and at loose ends. Boy – these Sundays are tough, aren’t they?
Last night, I rented “Mamma Mia” and my next door neighbor came over to watch it with me. We did like it – it was a real “chick-flick”. It takes your mind off your life for a couple of hours anyway.I hope that all of you do better in the following week.
Love – Joyce
