I have CLL, I have AIHA and now I have steroid induced diabetes and I am fed up. I have been up most of the night having a Pity Party. Believe me, its a waste of time and doesn't make you feel any better to have these crying jags, but its not easy to turn off once it starts.
I saw a world class CLL expert on Wednesday to talk about joining the RFC +/- Lullilimub trial. However, due to the AIHA it is no longer available to me. I am relieved as I felt this to be such strong treatment.
Choices now are RFC if we can get funding for the Rituximab or Campath. I have used both of these treatments before and not really keen to get started again. On Monday I will have a chat with my consultant and decide. The decision has been a while coming, what with holidays, and other things and it will be good to make the decision and stick to it. Then maybe I will relax a little more. I would not like to be turned down for lack of funding, but trust that the 'universe is unfolding as it should'.
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"The breeze at dawn has secrets to tell you.
Don't go back to sleep".....
Rumi Poem 'Across the Door Sill'
Thoughts from a CLL patient
Go with the flow. You can't stop the current, so enjoy yourself and don't let anything hold you back'.
Worry is like a rocking chair - it gives you something to do, but it doesn't get you anywhere.
'I think you go on dancing til the lights are turned out. Then you're dancing in the dark, and that's fine, until you come back into the light again'.
Joanna Lumley
Joanna Lumley
'You can't regret any minute of your life. You've just got to keep going'.
"The breeze at dawn has secrets to tell you.
Don't go back to sleep".....
Rumi Poem 'Across the Door Sill'
We turn not older with years, but newer everyday.
Emily Dickinson
Emily Dickinson
Who are you?
First you are you,
and then you are middle-aged,
then you are old,
then you are wonderful!
Lady Diana Cooper
and then you are middle-aged,
then you are old,
then you are wonderful!
Lady Diana Cooper
How to LIVE
Life should not be a journey to the grave with the intention of arriving safely in an attractive and well-preserved body, but rather to skid in > sideways, Chardonnay in one hand, body thoroughly used up,> totally worn out and screaming:
'WOO HOO....what a ride!'.......
anon
'WOO HOO....what a ride!'.......
anon
Words to Meditate on
Panic is a projection that is not real. We are not just our fears. Our fears to not necessarily determine our future. This is significant.....Greg Anderson
Keep dreams alive for when they die, life is a bird with a broken wing. It cannot fly......unknown
I am too busy trying not to die that I forget how to live...unknown
What the caterpillar calls the end of the world, the Master calls a butterfly....Richard Bach
Keep dreams alive for when they die, life is a bird with a broken wing. It cannot fly......unknown
I am too busy trying not to die that I forget how to live...unknown
What the caterpillar calls the end of the world, the Master calls a butterfly....Richard Bach
Begining of a New Day
This is the beginning of a new day.
God has given me this day to use as I will.
I can waste it or grow in its light
and be of service to others.
But what I do with this day is important
because I have exchanged a day of my life for it.
When tomorrow comes
today will be gone for ever. I hope I will not regret
the price I paid for it.
author unknown
God has given me this day to use as I will.
I can waste it or grow in its light
and be of service to others.
But what I do with this day is important
because I have exchanged a day of my life for it.
When tomorrow comes
today will be gone for ever. I hope I will not regret
the price I paid for it.
author unknown
Followers
About Me
- soapy
- I want to stay anonymous and use my blog as a way of releasing feelings and also sharing with others.
7 comments:
Soapy -
I just read your blogs and wanted to say hello. My husband has had CLL for over 2 years now and has just finished his first full cycle of chemo which consisted of rituximab, pentostatin and cytoxan. We are in the US and getting approval for these drugs were not a problem. I am sorry to hear you are feeling bad. I can only imagine how facing another round of chemo must feel. But, it helped you feel better before and most likely will happen again. I hope you can get approval for the rituximab, it seems to have a very good track record.
I want to wish you a Happy Birthday on Monday and know there are folks (who knows how many?!) that are thinking of you. Why don't you call your daughter and see if she can't spend a few minutes on the phone with you? Tell her you need her right now; I bet she doesn't know - most likely very busy with holiday plans, etc. Call her! Don't wait hoping she'll call. You need her now; tell her.
I pray you can find some joy today.
Jan
Hi Soapy,
I hope you had a nice Christmas. We had a very quiet one with my husband on the couch half the day with heart palpitations; he is much better today. Next week we host 2 daughters and husbands and 6 grandchildren ranging in age from 5-16 so it will be loud, exhausting and so much fun! Where is the UK do you live? I wish you a healthy 2009. Jan
Hi Jan, I hope your husband is feeling much better and that you are copy OK. I have always felt that the Carer has it worse than the patient :-)
Enjoy your grandchildren this week. I love mine to bits too.
Yes, I am in the UK but staying anonymous/addressless so I can blog away into cyberspace with no-one knowing who I am. I can recommend it as a tool for getting stuff off your chest if you need to.
Wish you a Happy, Healthy 2009 for you and your family. Soapy
Hi Soapy,
Having our family here has been great although we just found out that my husband has been diagnosed with a squamish cell (unsure of spelling) cancer on his vocal cords. He goes in for a procedure Thursday and he's having a cardiac sonagram due to irregular heart beat on Monday. Seems things are going from bad to worse just after chemo when things should be getting better.
I hear you about the caregiver vs. the patient - who has it harder? I cared for both of my parents who died of cancer (both smoking related which made it worse thinking it could have been prevented). And now to face it again with my husband seems almost overwhelming. But not quite. If it weren't for my faith this would be much harder. I know there's a reason here - it's just not for me to know right now.
Hoping you are feeling better.
Jan
I am sending out thoughts of light to you both and hope everything will go well on Thursday and Monday. It is a lot for you to face and I'm not sure how I would cope if the situation were reverse. My husband is my bestfriend and soul mate. I am lucky in that I have great emotional wellbeing support from a cancer centre. I have been going on and off for some years and my emotional caregiver phoned on Friday and we had a heart to heart. I felt so much better. We hide our feeling from our partners because we don't want to upset them and its good to get it out and talk with someone who is not emotionally involved.
We had some family come yesterday and had a great time playing board games with the children and laughing a lot. It helped a great deal. Cyberhugs Soapy
Jan, how are things going for you both? Soapy
It's now the end of Summer 2009 and my daughter has been just wonderful. if you should ever read this Mandy, know that you are the best daughter a mother could have. A great support that I couldn't do without. I am so very proud of you and this is my way to tell the world how glad I am that you are my daughter and so much well-loved. Mum xxx000xxx
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