Going out on a bit of a limb here, and hope it doesn't offend anyone. But I thought a bit of sharing about the positive things you have done in response to your diagnosis that you may have put off or never got around to, would bw worthwhile.
I say that as I am about to go to the Glastonbury music festival with my teenage kids. I think my diagnosis has pushed me to say 'The hell with it I'm doing it anyway....'
I'd love to hear what you have allowed yourself to do.
I stopped smoking on the day of diagnosis, and made the effort to become closer to my family. I had lost touch with most of them. I agree with you, diagnosis seems to be the catalyst for an I am going to do this attitude. Have a great time at Glastonbury it is an experience.
Hi fugazi, thats the kind of positivity needed and I think you are right in doing so, if these things help us to deal with the condition, then im all for it. I have taken up running, I say running, I mean fast walking at the moment, but it will progress!;). Enjoy Glastonbury, have a blast!!😉
I took over a cll society support group last year and I live each day to the fullest. I try not to let CLL take over on a daily basis and when opportunities pop up, I take them and enjoy every minute. I can't worry about what I can't control.
I don’t do anything differently cause three specialists said “don’t do anything differently!!!”.
But as far as my bucket list: I don’t really have one. I am just really reaching out in a personal way to others who are suffering instead of unconsciously avoiding people who are suffering. As I help people that feels good and I realize how much suffering around me. I like this website and talking to you all. I wish I could go to Glastonbury music festival. Sounds awesome. Reminds me of JazzFest in New Orleans.
I am trying to get to visit family that lives far away.
Trying to work less and get with friends more.
I go zipping around in my boat on the Bay that’s new but I hate cleaning it afterwards. A lot of work to clean.
I think simplifying my life but getting rid of “stuff”. Meaning personal possessions that cause a lot of work. I would like to live in a smaller place. So I don’t have to do all this yard work .
Great post.it has alot to do with attitude and getting rid of stress
Live alittle simpler ans appreciate each day
I am trying hard to de-stress.
I'm talking the summer off from work, in fact, Saturday is my last day. I'll go back at the end of August. I'm spending the summer with my babies. They are still young and they are scared. I want to spend more time with them and help them understand that I am going to be okay.
I'm also planning to revamp my yard while I'm off so I have a peaceful place to sit and enjoy life.
Carol 🇨🇦
Have a wonderful summer!
Great post idea!
Volunteered to administer a growing community of people when community membership was about 400. I've had the privilege of working with a like minded team that supports a rigorous scientific approach to ensuring we have the best available information to help us live well with CLL, which has seen our membership approaching 13,000, with about 4,000 active each month, where we share tips and support each other through good and bad times and make a positive difference for those we would otherwise have never met.
Rediscovered my love of walking and photography - passions that go well together.
Met my wife through the HealthUnlocked admin community - and travelled across the world to meet her two years ago, despite being severely neutropenic. 
Wonderful!
Wait so you are married to one of the other admins?? Which one!?
Don't forget that there are over 700 communities on HU, each with at least one admin .
I love your story. It's very special.
I had always wanted to try fly fishing. It was something that my dad did when I was very young. I attended a fly fishing retreat for veterans recovering from fly fishing that was very rewarding in multiple ways. I learned to fly fish and now do it once in a while with my son.
My wife and I love to travel and we plan to keep on doing that, but will be staying away from very remote places just in case I get sick and need medical help. A few months after finishing FCR we went on a great trip to Hawaii. We feel safe going there because there is a very good military hospital there.
We were planning to live on a sailboat once I retired, but with the diagnosis we have given that idea up. Oh well, we take the good and the bad as it comes along...
Chris
I have been fighting for many years with tumors.I have seen persistently elevated lymphocytes and because,I suspected that I have CLL.When I had a generalized rash,I went to a hematologist and told him that I wanted to do tests for CLL.Comfirmed Dg CLL.
My quality of life worsened after therapy.I am sorry I cannot swim for possible infections.
I am still helping people in crisis situations-it is my life call.
I am trying to keep hygiene.I go walk with my husband because my left legg is weaker
Despite many limitations,I have a good and joyful days.
Here,I have empathy.Thank you
Olga
The best positive thing I've done, is stopping to stress with the laudry, the dusting and different chores around the house. Doing thing more slowly, realizing a project on 3 days instead of 1.
Since I like to cook a lot, I bought a pressure canner and when I'm not to tired, I do some canning so it gives me some meals when I come home a bit tired after the work.
I've also traveled to Mexico with my mother. 2020, will be Paris.
I retired. My doctor didn't want me too, he didn't know what kind of cancer I had at the time so I decided to retire.
Obtained 3 second opinions and a Cll specialist. Joined Cll website. Went on plant based diet.
Took my 2 granddaughters to Kona, Hawaii. They still talk about how much fun we had. I didn't get sick.
I joined a dance group for exercise and performing 5 shows seating 500 for 3 years exposing us to 2500 people per show who wanted to shake our hands and hug us after the shows. Everyone in the show was over 65. I didn't get sick, my biggest fear.
I didn't tell anyone I had Cll even though several had other types of cancer.
I retired and did more of what I wanted- mainly crafting and seeing friends. I now run a card making group and have set up two more crafting groups.
Hi everyone!
It’s so awesome to read about the positive things people have done in their response to CLL. I was diagnosed in 2007 and was on w a w until 2014 if I remember my start of treatment date.
I decided to semi-retire last year which went into effect in May of this year. I am studying and teaching what brings me joy, we adopted a puppy and are training her to be a therapy dog that we can bring to Moffit Cancer Hospital abd the Children’s Hospital, I am more honest about my feelings with my family and close friends, and I have limited relationships with people who vex my spirit. I meditate more and I am considering a trip to South Africa, where I have wanted to go for many years.
I am working on the great fear that I have and I want to transform that energy into acceptance of what is at any given moment. In other words, having cll has helped me to become more mindful and to become more discerning about what is important to me in my life!
Blessings to each of you in the ways that you need,
Debrah
Thanks my dear friend Scott.I must many support ...
Gilda Radner (sp?)the comedian said that if it wasn’t for the sickness and everybody should get cancer.
Show me doing stuff perspective it is been great I went scuba diving with my daughter last spring in the Cayman Islands and I went skiing this spring in big sky Montana.
I probably never would’ve done either of those before I was much more conservative thinking I would live till 100 So far I’m doing well and hopefully I will bye it’s very helpful mentally kind of knowing you don’t know how long do you have .
Not that material things should be that big of a deal but I did buy a Tesla. It’s been fun and I have solar at home.
Good question thank you for sharing
Be well,
Hoffy
Have a great time at glasto. After diagnosis I decided to work less, so as I'm self employed I decided to drastically increase my prices to shake out some of my clients. Thinking a few would stick with me. What happened was I've got more business and income than ever, and the bank balance is much healthier I'm actually working more for more money, but I'm completely busy and active everyday and I hardly have time to think about my CLL. So the lesson I learned is to focus less on it and focus on the more constructive things in life and push harder with my business and stay active. Worked nicely for me.
Helped set up a local charity helping families cope with ICU. We put on a weekly exercise class ( all abilities) a mindfulness class & monthly drop-in meeting. We also speak to health authorities to change how critical care patients & their families are dealt with, visit patients weekly in hospital. I work full time but TRY not to travel away for work so often. We’ve also tried to change the direction of our work should the time arise when travelling away is impossible.
Liver damaged by CLL soon since beginning
Do I have CLL?
Australians have your say in getting CLL medicines approved
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