CML Newbie

Following on from my previous thread in the Worried category…

Today was the day of my haematology appointment and here we are - Chronic myeloid leukaemia confirmed. Bone marrow biopsy on Tuesday, then TKIs start that evening.
I feel… better having a diagnosis actually!

Told the husband, sister, work, parents… actually worse than being told myself, weirdly.

So. There we are…

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Hi @cs2 everything you say sounds so normal.
It must have been an exhausting time telling those people, perhaps just come time to terms with what is happening for you.
You will probably have entered a world of medal speak and probably waiting around again and not knowing.
I will give you the Blood Cancer UK link to Chronic myeloid leukaemia
Chronic myeloid leukaemia (CML) | Blood Cancer UK
We are here for you and I hope others will share their experiences
Be ever so kind to yourself and please do keep posting

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Hi
What a tough day you have had!
Am really glad you have some answers and understand your exhaustion in telling people
Hope you are okay
Take care and be kind to yourself

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You must be exhausted after today. I completely understand when you talk about it being harder telling everybody else. I felt the same to.
Please take good care of yourself.
Sending lots of love X

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Hello @cs2 - I understand what you’re saying - I found it tough to tell people, particularly when I was still processing. I was diagnosed with Chronic myeloid leukaemia almost 12 years ago and it came as a complete shock… I didn’t even know what it was! It’s different for everyone, but for me personally it took some time to adapt both physically and emotionally, but now it is just part of who I am. I’ve been off the TKIs for the past 1.5 years under close watch and all seems to be going well. Take good care of yourself and know we are all here to support you & I’m happy to answer any questions you may have if I can xx

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After having to run one of the world’s largest women’s rowing events on Saturday, I used social media to tell all my friends and extended family about my diagnosis. Some people said I was brave to do that, but honestly it was a massive cop out so I could avoid telling people in person or one by one!
My mother in law went a bit weird about it (I’m not sure she read past the word leukaemia) but my husband has run interference and told her to stop phoning me :wink:

Today I had a bone marrow biopsy, and picked up my first month of TKIs from the hospital pharmacy, so treatment starts tonight.
Blood test next Thursday, phone consultation next Friday.

I’m somewhere in between being totally chilled about it all, and it being quite strange. I was waiting at the spin-off cancer pharmacy at the hospital today when one of my friends asked me some questions about rowing event organisation… He’s actually working on a PhD in Alzheimer’s drug research about 50 yards away from where I was sitting so I just asked him if he had time to come over so I could answer his questions in person. I think he was more freaked out about sitting waiting for cancer drugs than I was. And then I wondered if I should be more freaked out than I am. It’s going to be a rollercoaster for sure.

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Oh @cs2 there is no right or wrong be to be or feel
I think it is great to do something completely different to concentrate on
Your diagnosis will come as a shock to others and they will all take it in in their own way, you chose a very clever way of telling people.
I had Christmas cards.
Let us know how you get on and look after yourself.

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