Saturday, 17 January 2009
Feeling Low Today
Today I feel really ill. This is the worst I have felt in 9.5 years of CLL. I shake, I feel really weak and have no energy. Just sitting is an effort. For the first time I can't wait for my hospital appointment on Monday. My husband was diagnosed as possible angina yesterday and maybe the stress of the day/diagnosis has made things worse. Spes fovet et fore cras semper ait melius (forgive if spelling is wrong) But I believe it means 'hope ever surges on and says that tomorrow will be better'.
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10 comments:
Hi Soapy,
I'm here reading your blog - what you say does resonate in cyberspace. My prayer is that you will feel better and have hope.
Jan
Jan, thankyou. How are you? And how is your husband doing?
I had a long chat to my daughter today on the phone which was lovely, the sun is shining and I have 2 snowdrops coming up so far in the garden. Thankyou for your prayers. I feel lighter today. I wish this for you too.
soapy
Hi Soapy,
I really hope you are getting to feeling a bit better. My heart and prayers go out to you. My husband is doing "OK" so he says. I am now 3000 miles from him across our country - he couldn't come due to a dr. appt. I am afraid he is losing his voice. When they looked at the tumor in his throat again they did say it has impaired one vocal cord so I fear it's getting worse quickly and that's scarey. He goes next wednesday to find out about radiation therapy. He didn't lose his hair during chemo and I hope he can keep it with radiation but I guess that's not something to really be concerned about. I just don't want him to lose heart.
I'm glad you got a good chat with your daughter - that does help loads, doesn't it? We had unusually cold weather recently and about 2" of snow (some years we get none). I am originally from So. Calif. so I was thrilled. Hope you can enjoy your sunshine. You are still in my prayers. Jan
Hello Jan, Yes, thankyou, I am feeling mentally much better. I feel for you, being 3000 miles from your husband. I can't imagine how you are feeling but I am sending out some good thoughts and prayers that things will get better and your husband able to come home. My husband has his angiogram on Thursday 5th.
We had about 3 inches of snow here yesterday and my consultant phoned to cancel my appointment as he couldn't get to the hospital. While I was out today, I saw some children making snowmen. It was great. We don't get snow much here and it looks so lovely doesn't it?
Hi Soapy,
I am so tempted to share your blog with my husband about doing the normal things before chemo (borrowed time) but not sure as it might upset him some. He starts a 7 week treatment of chemo and radiation on 2/18 - 5 days a week. Dr. says it will most likely be a year before he is back to normal (if he does get back to normal). He is expected to lose his sense of taste, be on liquid food because of trouble swallowing, be nauseated, lose hair and be on pain meds for months. I am now visiting my family in CA and am trying to soak up all the good things here to carry back with me for the hard road ahead. When I wake in the night and start to think about it, I force myself on to other topics as it looks so dismal, I can't bear it. The unknown future is scarey - anticipating it may be worse than the reality. I pray that I am up to caring for him - I've cared for and watched both parents die of cancer and I am afraid I am on that road again. I know God will help me thru it; I'm just trying to let it all in slowly so I don't freak out. Letting it all out here is helpful - thank you for sharing your story. God Bless you!
Jan
Bless you too Jan. I have had 3 different lots of chemotherapy over the years, pneumonia and sepsis too, but I have still done so much since diagnosis and during remissions. I will try to collate it and post it soon. Your husband might find it interesting and maybe give him food for thought. I have never had radiation though but have had good remissions from the chemo. What sort is he going to have? It will be better for you both when treatment gets underway. Thinking about it makes it much more scary than actually getting on with it. Hard to believe but its true. I will put a copy of another CLLers Post on my blog next which may help.
I am glad you are visiting your family, you will not be on your own and being with family is special. People are thinking of you all and where thought goes out into the Universe, so does light.
Cyberhugs, Soapy
04 February 2009 06:47
soapy said...
For Jan - A CLLers Post (the writer was a member of a CLL list who posted this to another list member who was very scared to start treatment) to show how we can 'over-worry'.
"I think you are over-analyzing the situation like I did. I had all these ideas in my head as if everything that went wrong with chemo from every person on this list was going to happen to me. I was going to start RFC and
I was going to pass out in the stall like (name here). I would need large doses of allopurinol because my kidneys would start failing due to the sudden death of all those cells giving off their poisons. So I would need the good old dialysis machine next to my bed. But then my heart was going
to temporarily stop beating because of the bad reaction I was going to have to the Rituxan. Oh and the chills and rigors would be so bad that they would be able to put me in a tub of water put soap suds in and throw in their dirty laundry. But it wouldn't stop there. No sirree. AFter that Fludara, I was going to start hemolyzing and the trouble would really begin. And then after all this, the treatments would act on the cancer like bullets bouncing
off of Superman. You can see how ridiculous this can get."
hugs, Soapy
04 February 2009 06:57
Hi Soapy,
Thanks for your response. My husband will be getting cisplatin. That will be for 2 of the 7 weeks. 7 of 7 he gets radiation and won't be able to eat due to pain swallowing. He has a better attitude about it than I do. He has to be bolted to the table to receive the radiation with a face mask and teeth and jar guards and has to remain perfectly still. That freaks me out more than anything I guess. I think they may have to give ME the anti-anxiety drugs to get thru it. Hopefully I am not allowed in the room at the time. I just don't know that I could submit to that; but God gives us the strength we need and my husband is going forward with it. They said he will need pain meds from week 2 thru week 10 and could be as strong as morphine or oxycodone.
But all that said, you are right; the anticipation is oft times worse than the reality. That certainly was true with his chemo. Thank you for your blogs; I can let my worse fears fly - I can't do that to my family and especially my husband. Thanks again. Hugs to you too. I hope you are feeling much better these days. My thoughts and hugs are flying over the pond...
Jan
Hi Jan, Please feel free to let yourself unload. No-one knows who we are and so it is anonymous and I know it helps me to talk too.
My sister had radiotherapy for breast cancer some 20+ years ago, but nothing like you are describing for your husband. You must both be in such mental pain. Maybe you should look at some anti-anxiety meds to help you through this. My husband was given a clean bill of health from the angiogram this week and we are so relieved. It was a small thing compared to what you are both going through, and your family too, but I know you will find a way to cope. Take it day by day, or hour by hour. Try not to think into the future and know that I am thinking of you and sending you some light and healing thoughts.
love Soapy
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