Hi,
I am in a similar position. I had routine blood tests, I was exhausted, having difficulty concentrating etc. I had put it down to having other health conditions, and several family emergencies ( 2 family members hospitalised) so just being generally run down. My GP did some blood tests, I’ve always had low iron off and on but the white blood cell was slightly high, did some repeats, slightly higher still. The next thing I knew within a week I had been referred to the haematologist. I genuinely thought I was wasting their time as my tiredness etc made sense, then I heard those words Chronic lymphocytic leukaemia (CLL). I felt sucker punched.
That was just last week, it is still sinking in. I am lucky that I don’t need treatment, but because of my age I am likely to (<40). I completely understand the feeling @Crazycatlady of being in a daze and not ready to tell family and friends. I have told a few people close to me, but that was almost worse than hearing those words from the haematologist.
I think a good thing with it being chronic I have time and can decide when to tell anyone else.
I am struggling with normality at the moment, I have been going through the motions. Thankfully I’ve been off work, and have kept busy ( although having difficulty concentrating on anything serious) where I can but sometimes it just hits and I really don’t want to leave the house or see anyone. It’s been less than a week so I’m guessing from the really helpful, supportive people on these forums that is understandable.
Hello.
Welcome to the forum.
I find its so good to share thoughts and experiences on here as people can relate.
You said you felt that you were waisting the doctors time, and i felt like that too. Normally in good health and hardly ever ill beyond the odd cold virus.
Im in my late 50s but i dont know how long my body has been experiencing Chronic lymphocytic leukaemia (CLL). Years for all i know.
Needless to say, like you, its all very raw at the moment.
Everyone is different and we all have our own coping strategies but for me i love DIY so doing a little job when i can gives a great sense of wellbeing. I feel me again.
Not sure if you have a hobby or something you simply enjoy but you may find it helps.
Live as well as you can from a diet and exercise perspective and try fill your days with goals that can be flexible from a deadline perspective.
In short, do what feels right and be good to you.
Take care.
Mike.
Hi @Anne13 a great big welcome to our forum and @GenesisDevice has given you a great response already.
I was also diagnosed through routine blood tests at the age of 53yrs old, that was 21 yrs ago and I have never had treatment and always been on active monitoring (watch and wait).
With me hearing the words Chronic lymphocytic leukaemia (CLL) I also felt a punch in my stomach but saw the words in my mind with great zig zags around them and thought I must not forget them.
I was in shock for a long while.
I couldn’t explain to others what I did not understand myself and made a mess of communication with my employer.
You show so well how we are all complex individuals, give yourself time to come to terms with your diagnosis and be ever so kind to yourself.
Yes, diversion tactics to keep the mind on other things I also find good, I am a Pilates girl and as I am a very nosey person I love walking. Unlike @GenesisDevice my DIY skills are not the best.
I have realised the best things in life are free like good family and friends, nature and music.
I look forward to hearing more about you and really look after yourself
Hi @GenesisDevice, thank you, the forum seems like a great source of honest personal experiences.
I think that maybe was the biggest surprise, I do have tiredness and regularly catch bugs but I have an under active thyroid and work in a hospital so I just chalked it all down to that. I’m really glad you are normally well, and I hope that continues for a very long time!
Its hard to explain to others that shock and rawness, thank you for being so honest. Even just coming to terms with the reality that we have had this for awhile, part of me does think it would have been easier not to know. I know knowing is better so I can be monitored, but for peace of mind not knowing would have been easier in the short term.
I’m glad you have coping strategies, I too like DIY, it gives something to focus on and it feels productive. I have been resorting to attending pilates more this past week, I think @Erica mentioned she uses that too. Its just an hour were no one knows and I can just focus on being there.
Thank you for the advice, I do needed to find more hobbies. I have struggled to fit these around my shifts and home commitments for quite a while due to tiredness and lack of time. Something good to come from this is I will have to re-evaluate somewhere along the line and be a little kinder whilst reminding myself my energy isn’t endless anymore. I was reminded recently by someone I love ( a week before I found out), that to look after those I love I need to make sure my own cup is full . Those words are ringing more true than ever now.
Thank you for the great advice
Yes, @Anne13 perhaps look after yourself as well as you do others!!!