I was diagnosed with CLL about twenty years ago. Nothing seemed amiss at first,but now at 91 I am beginning to have symptoms of anemia which does not appear to have any obvious cause.
This engenders tiredness, itching, lack of energy, - all very upsetting as I enjoy playing tennis with friends, and hiking , singing and generally being active.
So reading your postings makes me aware that the CLL may have started it's depredations . OK I am lucky to be active at my time of life but life is for living and if I cannot live it to the full what do I do? My wife of 59 years died 6 weeks ago and I miss her company, but I am lucky to have a great bunch of grown up children who look after me.
At the moment I do not have a clear idea of the future. I am not afraid of dying ,
" but though we are not now that strength which once moved heave and earth, that which we are we are... Come my friends, 'tis not too late to seek a better world."
Written by
calebF
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First of all I want to say that as a newly diagnosed person at 46, you are such an inspiration to me having lived so well with this for 20 years. My only advice would be to discuss these B symptoms and anemia with your doctor or CLL specialist and they can guide you to a safe and tolerable treatment for you that won't interrupt your active lifestyle.
I am so sorry to hear that you lost your wife. I must say the attitude you have about life is great and certainly has been a factor in your longevity and will help you to continue to fight CLL. Welcome to this community. There are so many wonderful people here.
Wow Caleb! You are an inspiration. You do amazingly well for your 91 years, your family must be proud of you.
I'm so sorry to hear about your wife. Emotional tiredness is worse than any physical fatigue and I would think that the loss of your wife after so many years together has taken its toll.
They say that the death of a loved one is like staring into a big hole and although the hole never gets any smaller, little by little we are able to stand further back.
I'm sure the love and support of your family helps enormously
Please accept my condolences for the loss of your wife. I do not propose to know just what you are feeling. You are mourning that great loss and it is not unusual for you to be feeling tremendous fatigue under that circumstance.
The anemia may be part of that fatigue, but the bulk of your "heaviness" has to be the so recent loss.
It isn't easy to know that the fatigue of a loss so dear to you will pass with time. But, given time, it will ease for you.
As far as the anemia is concerned, are you seeing a Dr. who is working to help you with that issue?
Please share with any Dr. you are seeing, the feelings you are experiencing. A little help with some medication in the area sleep, if that is a problem, is not something to deny yourself.
Having lived to 91 and so active a life, I know you know everything I have said here and more, but there are times we need someone to remind us of what we know.
May you take each day and each step in the assurance of your faith and blessings to you during this time of deep loss.
Welcome CalebF, 91 years young! Take the advise of this community of friends, seek medical help and support so you can continue to enjoy the love and support of your children until it is time to step to the 'fourth' age and rejoin your beloved wife
What an example you are to our newly diagnosed community members, that some of us can live without intervention for many years. No doubt keeping active has helped, sadly much depends on which type of cll one has.
As you have experienced, the hardest part of longevity is having to part from those you love not so blessed, however you seem to have plenty of support around you and now you have a community of us who are pleased to welcome you.
Nevertheless losing one we love is hard, so if you need to talk you will find good companions here.
Thank you for posting such a positive example to all of us. It must be hard to be positive after the loss of your partner, and I send my sympathies. Don't worry about the future and what you are going to do, just settle for a day at a time as this disease teaches us.
I liked your quote at the end. Are these your words?
First of all, commiserations on the loss of your wife... this must have been a big blow, and just maybe has fed into your symptoms - or at least, your awareness to and response to them. When we're feeling low, we become more aware of other problems - I think.
Secondly - I never had anaemia in my life until a couple of years after chemo treatment for CLL when I was around 66 or so... the doc was afraid I'd got an intestinal cancer, so sent me for a colonoscopy (not fun, so avoid if possible!) ... no dice there. Treatment with the ultra-cheap ferrous sulphate and cyanocobalamin (a B12 vitamin substitute) fixed the anaemia, so no more breathlessness on the hills. (This was done immediately, they didn't wait for the colonoscopy to prescribe the pills.)
Have you been treated yet for 'just' anaemia? You may find - as I did - that it's all you need at present. Or are there other reasons to think the CLL is progressing?
Very best of luck for a few more good years - my mother is 95, still driving her own car, still going strong!
Yes, it seems that medicine is not an exact science, and the living body a very complex organism. I trust the medics (my wife was one) but it is a slow process.
It was good to hear how long ago you were diagnosed. I'm 69 and was diagnosed 6 yrs. ago. My hematologist told me the average longevity was 10 yrs. treated or not. I was told I'm stage 4 but still waiting for him to till me I need chemo. He also told me since it was an average longevity that some people go 20 yrs. or more and die of something else which is unrelated. I am a volunteer for a different go up the Leukemia & Lymphoma Society. I believe they are the largest Organization devoted strictly to blood cancers. You can check them out for yourself at lls.org if you have access to a computer. Once on the site click on the portion for patients. This will get you to a menu with lots of choices to get information, financial help, support groups, videos or hard copy info. They also have the number and other ways to connect with information specialists which can help contacting doctors and other professionals as well as drug trials and info on bone transplants etc.
Enjoy your life be concerned but not obsessed with the cancer.
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