I am one month into my treatment of Chronic myeloid leukaemia. My diagnoses came came after a trip to India where I picked up some bad bacteria and parasites. Other than some nusance diarrhea, I’ve never really felt bad. It was only after taking several rounds of antibiotics to address the nasties I brought home from India, and my WBCs remaining abnormally high (max of 35,000 so not even all that high) after the bacteria and parasites were eradicated, that they looked for other causes.
After meeting with the oncology nurse to prepare me for side effects of imatinib, I felt like I needed to tell extended family and work, the later due to anticipated absences from drug side effects. My only side effect has been some occasional fatigue that on most days I can push through. As far as work, I’ve only missed about 1.5 days and a day of that was a mental health day after learning of my diagnosis.
I’ve not experienced the guilt like some others in this forum, but I have experienced being grateful in spite of the fact I have cancer. At the same time, considering our long term prognosis, my very mild side effects from imatinib, and the fact I’ve never really felt bad because my Chronic myeloid leukaemia being caught so early, it is sometimes hard to believe I have cancer.
I told one colleague of my diagnoses because I wanted to prepare them that I my not be able to fulfill some expected responsibilities. Their response to me was feeling sorry for me and my diagnosis. While their sentiments were well intentioned, considering what many cancer patients go through, the last thing I want is for someone to feel sorry for me.
When my oncologist confirmed my diagnosis she told me that within 4-6 months of treatment, having Chronic myeloid leukaemia will be like treating any other chronic condition like high cholesterol or high blood pressure, you will take a pill everyday, and go on with your life. In many ways, this has been my experience since the beginning. I’ve never really told others about my cholesterol or blood pressure diagnoses, do I then treat my Chronic myeloid leukaemia diagnosis the same? For those of you who have lived with this chronic condition for some years, what advice can you give about who to tell, or not tell, and when to tell them?
Hi @Blair, welcome to our forum 
. I’m very glad that you found us.
I’m sorry to hear about your diagnosis. The truth of the matter is that each of our journeys are unique and how we react and respond is personal to each of us. There is no right or wrong way, and I can only speak from my personal experience.
I’ve been living with Chronic myeloid leukaemia for over 12 years and am happy to say that I’m doing well and have been off medication for the past two years under the guidance of my consultant, and I continue to be monitored very closely.
I was 36 at diagnosis and for me it was a huge shock. On reflection I had had some symptoms I now know to be indicators I was unwell, but at the time I just thought I was run down. I did however feel quite unwell when I went on to the medication and psychologically I struggled with the diagnosis, so took some time off from work. I told close family, friends and work straightaway. Having a support network of people that knew was hugely helpful to me. I also found it helpful that my employer was aware so that they understood my situation and could support me with any necessary adjustments in terms of time off / adapted work schedule when I returned to work, and the need to go to appointments etc.
I’m sure others will come forward with their personal experiences, but you can also contact the Blood Cancer UK support service if you wanted to speak to someone: Blood cancer information and support by phone and email | Blood Cancer UK.
Take care and do keep posting,
Maggie
Hi @Blair I am glad that you have found us and @MaggieLT has given you a brilliant reply.
Interesting question and perhaps as we are all unique people with differing lifestyles so perhaps you can make decisions on who to tell as and when as you have done already.
The only thing I would say is if you do not want others to find out from someone else then consider who you do tell.
I was diagnosed 20 yrs ago with a chronic leukaemia. I told more people at that time. Now I know a lot of people who do not know.
Originally I felt I was seen as ‘Erica with leukaemia’ for a while and not just ‘Erica’.
I reckon your oncologist gave you rather a good response.
Really look after yourself and I look forward to hearing more about you.
Hi @Blair
A big welcome to our forum, I’m also very glad you found us and felt able to post. You’ve already had some great replies and I hope you continue to find it a supportive place. Please do let us know if you have any questions about using the forum.
I just wanted to add a resource that might be helpful if you do decide to tell your workplace about your diagnosis. On our Blood cancer: money and work | Blood Cancer UK webpage, if you scroll down to the section on “Talking to your employer”, there is a handy factsheet that you can give them as well as an email template to help you work out what to say.
It’s obviously personal to you as to whether you decide to take the advice on the webpage to tell them, but do take care of yourself and don’t put pressure yourself while you process this diagnosis. It is so positive to read that you took a mental health day when you found out. Perhaps take some time to think about what else you may need when you have appointments or if the fatigue is affecting you.
Our information about Chronic myeloid leukaemia also has a section on looking after yourself and helping your friends and family, which could be useful to read through Looking after yourself with CML | Blood Cancer UK
Hope this helps and sending you best wishes,
Ali
Hi there
With a cancer diagnosis your are protected by the equality act
Your workplace should have a long term ill health policy which you may wish to ask for and an attendance policy
Your can ask for reasonable adjustments
it maybe be wise to let your employer know of your diagnosis in case you suffer discrimination at work due to disability
People that you tell have different reactions to your cancer. I didn’t want anyone saying sorry. I was asked the question what would I say to someone in the same position and guess what I said I would say I was sorry to hear.
I lead the conversation about my cancer to try and stop anyone feeling uncomfortable
I say cry shout be sad then smile and be positive for me 