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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
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.
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
Thank You all so much, finding this site is blessing.
. My tips for fighting fatigue are the following:
Elderberry is used for its antioxidant activity, to lower cholesterol, to boost the immune system, and for coughs, colds. I use elderberry jam on my toast every day during cold and flu season
Aronia berry is considered a superfruit due to its nutrient-rich content. It has the highest antioxidant level and I use a few in my morning smoothie.
And last but not least the big daddy of them all....Shots of Wheatgrass juice
The most outstanding feature of the wheatgrass is its very high content of chlorophyll at about 70%. This alone makes it a superfood that has a highly energizing and alkalizing effect.
Wheatgrass is a complete food and an excellent source of vitamin C, E, K and B complex (including B12). In the minerals department, it is rich in calcium, cobalt, germanium, iron, magnesium, phosphorus, potassium, protein, sodium, sulphur, and zinc. This grass also has a long list of amino acids - about 17 types of them and about 80 known enzymes.
Anemia- The high grade content of iron in wheatgrass juice makes it a great blood builder, increasing red blood cells count. It regenerates and reactivates the red blood cells and supplies fresh oxygen to the body.
Detoxify- Consuming this juice regularly for detoxifying the lymphatic system. It also helps eliminate encrustrations and faecal matter in the intestines and colon for a healthier gastro-intestines. One shot of wheat grass is equal to 2 and 1/2 pounds of green leafy veggies.
I feel better when I drink 2 ounces every day, I have more energy and can tell when it wears off. My red blood cell count has held steady for the last year I've been drinking wheat grass shots. Now it taste bad really nasty but you just have to man up and down it. My Dad tried it but said it taste like the cow burps. Really he said that and my cubemates at work make mooing sounds around 10am when they know I take my shot. I hope this posts I'm having a little trouble with that and why did the font change? I hope this can be of some help to you all. Hugs Jackie
Jue, I do understand your worries everytime blood work rolls around my anxiety goes up too. I hope your Mom is doing OK. I also understand the wait time between blood work and doctors appointments days later. It is just cruel. It was that way on the east coast of the US when my husband was sick but here I get my labs and 15 min later I see my oncologist. I'm also at stage A, or 1 and have been for a very long time. Yes our lives have changed and there is a new normal but my WBC was 19,000 in 2005 and now it only up to 27,000. Wheat grass juice seems to keep my RBC at the low end of normal but they are solid. Now my platelets are kind of low 120 or 114 that concerns me. I know what the first few months and years are like, very stressful but it will be OK. I posted my tricks for fighting fatigue. Would love to know what you guys are using in the UK. Just breath every time you feel worried Oh I forgot what I used to do when first dx- I would watch the my favorite films comedy- Best in Show- Stuart Saves His Family- The Full Monty- anything to make you laugh for awhile and break the cycle of worry. Hugs Jackie
Nick, your the first person I've found who had the same experience. I know it was three years ago but did you have and MRI, CT Scan and MRA? Careful on that ladder now everyone needs a spotter when climbing heights. During the thunderclap headache issue in Sept my blood pressure was low very low they seemed concerned but it is kind of fuzzy to me now. I have researched medical journals and the web and end up with the same answer- zero. Glad to hear it did not return. As for life on the farm- new adventure everyday whether you like it or not. On a weekend I can tell you guys some funny stories but we have a 6 hour time difference and I probably will not be back on at a reasonable hour until Sat. I'm home today fighting off yet another cold. Its best for me anyway to stop and rest for a day or pay the price and miss a week of work. Talk to you Sat. Jackie
Quick Hi JackieG - a brief welcome from me as I am a little overwhelmed at the moment looking after my husband Kevin who started chemo last week and has been rather knocked sideways by it. :-(
Having 4 x inlaws in the US (maryland, brooklyn & Texas x 2), all of whom are my husband's siblings who he cannot bring himself to share his illness with, I'm not surprised you find the approach of people there a little harsh. I found my way here as a carer as Kevin was first off diagnosed with CLL, but this was revised to NHL (follicular). However, this group has been such a support to me that I've hung around to bask in the general feeling of goodwill and warmth I have found here - everyone has been so supportive and kind - and honest (!) but with not a hint of harshness or bad feeling, It's just a good place to be so again - welcome X
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