A post was merged into an existing topic: Having a stem cell transplant
Thank you for sharing your experience with us within the safe space of the forum. It sounds like you are managing your life with Essential Thrombocythemia and it hasn’t taken your charisma away
In your spare time since being diagnosed, how did you get involved with activities such as gardening, hill-walking, and cycling? Could you offer advice on places or community groups that got you involved? I know some people would appreciate the information in the living with blood cancer section of the forum.
It is lovely to meet you and thank you for welcoming me to the team. I have gotten a grip of the forum and understanding the ins and outs of it. I am glad you are able to manage your symptoms of CLL and you are tackling everyday tasks.
I really appreciate you sharing your experience with the forum. Some people maybe coming to grips with their diagnosis and also trying to balance out work. I was wondering if you could share your experience in the forum section going back to work, while diagnosed and offer some advice during that period in your life? it could be beneficial to some people in the forum community.
Hello @Colly! Thank you for sharing your experience with the Bloodwise community forum. Every bit of information you share allows me to understand you a bit more and simply get to know you.
I was wondering if you had any advice for people in the forum community about your treatment process of the monthly IVIG and the cycles of Ibrutinib? Any information would be helpful to people within the forum. Please feel free to join in a few conversations and let us know your thoughts and feedback!
Lovely to meet you and welcome to the Bloodwise community forum. I want to congratulate you on your 10 year success recovery after your experience with AML. It sounds like your family was very supportive during your ordeal and have been by your side.
You said your children were 21 and 18 at the time of your diagnosis, I was wondering if their is any advice you could give to Bloodwise community members about telling children about your diagnosis? I feel like its an important topic and many people wouldn’t know how to even start the conversation about it.
Also @Corfu80 please feel free to join in other conversations and provide any feedback you can!
Thank for sharing your experience with the Bloodwise community and I look forward to meeting the ambassadors. I also want to say congratulations on your remission 2.5. years ago and it must have an uphill battle dealing with AML when you were diagnosed in December 2014.
@Jane I was wondering if you could share some advice to the Bloodwise family about finding a new normal after your treatment had finished? Some people in the forum could use some of that information in the future and help them manage their day to day tasks. Anything would be greatly appreciated.
Thank you for sharing your experience with us as a community. it makes us stronger when we get to know everyone’s story. I did some digging and found the articles you have written and I hope you don’t mind me reading them. Your journey seemed difficult and I am glad you are part of the forum. Many people could use your knowledge about your diagnosis with MGUS in 2011 and it converting to Myeloma in 2015.
In your blog, you talked about a low chance “1 in 20” of MGUS developing into Myeloma. I was wondering if you were dealing with any anxiety at the time? Or if you were constantly worried about it?
It would be amazing if you could offer some advice for people in the anxiety-managing forum thread and how you were able to manage it. @Erica mentioned how she was in a bubble with fear and worry during her process with CLL.
Have any of you guys competed in Bloodwise events? I am the new guy around the office at Bloodwise. I am thinking about competing for one of the events.
I am not for sure which one I would like to do. I was wondering if anyone could offer any feedback to myself or anyone in the Bloodwise community in the competing for bloodwise forum thread? any training methods or regimes that might be useful. it would not only help me out, but also members of our community too!
A post was merged into an existing topic: About the Living with and after blood cancer category
Hello everyone! I thought would also bring into the discussion of the importance of diet and exercise. Their is forum thread called diet and eating well. I thought it would be an interesting conversation since we will all benefit from it. We could also learn from each others diets and how to improve ourselves.
Let me know what you think.
Thanks for reading my blogs. They were written to be shared with as many people as possible in order to make people aware of what blood cancer is and what it means. Happy for the blogs to be shared with the forum.
Thanks so much for taking the time to write your blog, it is so well structured and written and I really felt I was right there with you, take care.
Thanks Erica. Appreciate you taking the time to read it and for your comments.
I will get on it this evening for you and try my best to explain how I told my children etc
I appreciate it!
I’m Anna, also known as ButterflyinRemission (my Mum started calling me Butterfly while I was in Hospital because of my life long obsession with butterflies!).
Diagnosed with AML in April 2015 literally overnight and out of the blue I was rushed into hospital on a Monday evening and spent the next six months as an in patient having intense chemotherapy. In September 2015 I left hospital in remission and so far have remained so. They are keeping a close eye on me because they are hoping I will stay in remission without a stem cell transplant. My recovery has been a bumpy road, slow and I have learnt a lot which I am happy to share.
I am a wife, mother to an 11 year old (she was 8 when I was diagnosed), work part time as a Pharmacy Technician as well as running my blog. I’m a Digital Ambassador for Bloodwise and am looking forward to linking up with other people affected by blood cancer in this forum because I know first hand how valuable peer to peer support is.
I am not wasting this second chance I’ve been given and feel extremely lucky… so the Bloodwise phrase ‘Life is a gift that should be used wisely and lived fiercely’ is pretty much what I am doing now. I love being part of the Bloodwise family and have had the privilege to be involved in many activities helping me and my family cope with my diagnosis, as well as our various fundraising events… giving back is very important to me now.
Lovely to meet you all and read each of your blood cancer stories, I live in rural Lincolnshire so this is my only way of ‘meeting’ other people in a similar position as me.
Hi Anna and I love the Butterfly in Remission.
Thanks Erica!! One day I will tell you the background of me and butterflies… it goes back to my childhood!!!
Hope you are keeping ok