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Greetings and thank you Sparkler and Junie for the kind welcome. My name is Jackie, I'm 47 years and I have CLL. I was dx in January of 2005, although it presented in November of 2001 but they were not looking for CLL in someone so young. I have been on watch and wait since dx in 2005 and blood work ever 6 months. I live on my parent's farm in a very isolated, rural area of Iowa. I do not have any children, my husband died of lung cancer in May of 2004. I was his primary care giver and we lived on the east coast of the US, a very long way from my friends and family. I took a leave from law school for a year and took care of my husband full time with very little help.
Ok I read this is a softer place so I'm going to share something here I've felt but never written or spoken. I had CLL while caring for my husband Walter and thank God we did not know it, because I could not have taken care of him and kept it together if I knew I was sick too.
I have been on other sites in the US and found lately politics are working their way into sites where the do not belong, people are harsh with one another and I can not deal with that right now. I'm usually as tough as nails most of the time, but the following happend: On September 1, 2012 I woke up and with in 20 seconds it felt like someone hit me across the forehead with a Louieville Slugger (baseball bat), I fell back on the bed in more pain than I can articulate. I did not move for about 7 hours- long story short no one found me for about two days. My close friend Jill called and I guess my words were out of order. I went to the Emergency Room - after MRI, CT Scans, MRA and Spinal Tap. I had a benign idopath thunderclap headache. Which is basically a dx of exclusion- 2/3rd of the people this happens to have a stroke within hours, days or weeks the other 1/3 they just don't know. I had a headache for 34 days and serious cognative problems until it stopped. I thought I was toast (in Iowa means finished career over) . I'm in the 1/3 catagory they don't know what happened and I feel just like I did in 2001 when the fatigue started. I knew something was wrong but the best doctors at John Hopkins and University of Maryland could not find anything. I tried to tell my employer only as much as necessary in September, they know about the CLL but if I lose my job- I lose my health insurance here. Feeling better now but still afraid it will come back- more than afraid I'm scared. I check in with my Mom or Dad every day now so they know I'm Ok.
As you all know it is cold and flu season so I hibernate- only going to work during the week and the store once a week. In my spare time I adopt and work with special needs cats and dogs and find they help me as much as I help them. I like to work with the livestock on the farm and take long walks with the dogs and stray calf that follows me around. I have a few tips for fighting the fatigue I'd like to share.
Thank You so much for the warm welcome, I look forward to talking with you all.
Hello and welcome again Jackie
Thank you for sharing so much of what you've been through with us; it is humbling to hear what you have experienced. I can't imagine what it must have been like for you to care for your husband, whilst being so far from family and friends, to help support you and then the sadness of losing him.
Then you have had to cope with your own CLL diagnosis and you found harshness, when you needed kindness from online support groups. You will find caring people here.
I have only been dxd with CLL for a little over 2 years, although I have had it for longer. I have other health problems too, as do many here - we all support eachother and I look forward to getting to know you better.
Others will be along to meet you and will relate, also to your some of your most recent scares. As you know, many will be asleep here now.... I am a nightowl (which doesn't help my fatigue) but I always have been and some habits I don't want to break - I catch up with some sleep during the day.
Your offer of sharing tips to deal with the fatigue will be most welcome with so many of us!
Take care Jackie and we'll talk again soon.
may everyone stay well, happy and free from suffering
Hi Jackie and welcome,
Glad you found us here. I'm sure you will feel comfortable here.
Thank you for joining us and sharing so much you have had a lot on your plate and been through a lot, we don't do politics hear., I am untreated and my disease seems less of a problem these days, other issues have had the foreground. that is why I relate to your head and cognitive issue and the worries that it has created. I had a strike in the middle of the night three years back, following a smaller one a few days earlier which left me with a lot of head pain and cognitive issues for a few months. I still wobble a bit on the ladder as I decorate today. ( : I have removed dietry risk bad habits and now am on prophylactic medications to reduce my blood pressure and thin my blood. But remember so clearly the worry that something may go bump in the night again at any moment. That was very scary. You are right to keep on top of things and have yourself checked regularly.
I am an animal lover your life on the farm sounds really interesting, look forward to reading more
Hi Jackie - you are so brave to share your story with us. I felt so sad and greatly moved by your situation, what an awful time you have had. Apart from the tragic loss of your husband you have so much else to cope with and the thought of a 34 day headache is barely imaginable, just dreadful. It was good to hear that you are in a slightly better place at the moment.
You are so wise to check in every day with your parents and you sound as though you manage a good outdoor lifestyle a lot of the time and this can only be good I'm sure. This friendly corner is an excellent place to release your feelings, we really are all here for one another.
Fatigue seems to plague us all to a greater or lesser degree and doesn't seem to be given a great deal of importance a lot of the time and it really is such a debilitating condition, so any tips at all to help it will be greatly appreciated. Take care Jackie.
To you and all our other friends here - Hugs from Junie xx [Good luck this week MagpieMike x]
Hi Jackie - as my fellow forumers have said (is there such a word?) Probably not! - welcome to our site and I look forward to reading your posts and am very interested that you are from Iowa. I think we have one or two members from Canada but I can't recall anyone from USA posting so it is great to hear from you!
I was very sad to hear about the terrible time you had with your thunderclap headache - what a good thing your friend called round and found you. Also you wrote about your husband and his cancer - my very best and warm thoughts about you and the trials you have been through in your life.
Jue is right - I think we would be able to spot anyone who is not genuine on this site - but I can only recall one person who raised my suspicions since being a member and we quickly saw him/her off - at any rate we never heard again.
I would be very interested to hear your tips on fatigue which is a real problem of course for all of us. I gather you are still working (as well as looking after the farm animals). What happens in USA if you have leukemia but you do not have health insurance from an employer? Would you still get chemo under some sort of government scheme if you were not elderly? I would be very interested to hear.
Best wishes Jackie xx
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