CML and in Limbo

I recently had an appt with a Haematologist and was told my blood results were probable Chronic myeloid leukaemia. My bone marrow biopsy test is this Wednesday but I can honestly say I have never felt so awful as I have in the last week. I’m confused as to whether my symptoms are that of Chronic myeloid leukaemia or Anxiety. I even think I had a Nighttime Panic attack last night as a result of the worry. The thing is I’m not worried for myself but my husband and the effects it has on him as he has been diagnosed with GCA and my elderly Mother who I fulltime care for who has Dementia. I’m angry with myself that I have gone down sick and that I may fail them or put pressure on my husband to get things done for me, albeit he is the most supportive husband I could want for. I read every ache, pain, tremble, as a symptom and think I’m worse than I probably am. I am struggling to find foods that I can eat and am also really dry in the mouth even though I’m drinking plenty of water. Water with lemon is my go to as it seems to help the most. I just wish there was a list I could read that tells me how I should be feeling or what to expect.

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Oh @Dee24 I am so glad you have found us, a great big welcome to our forum family.
It sounds as if you have so many thoughts and feelings whizzing around in your mind, it sounds completely exhausting to me.
We certainly do not choose to have any condition.
I have found anxiety can be debilitating.
Perhaps there is no list as to how we should be feeling, thinking or doing because we are such individual, special beings
I wonder what you think about seeing your GP and saying what you have posted here.
I benefitted from some talking therapy to unpick all my thoughts and emotions to make them more manageable.
You might also be able to get some dietary help from your GP or hospital.
I reckon that the unknown and waiting is always scary.
I try and keep it a day, although it certainly is not easy.
It sounds as if you have a brilliant husband.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Macmillan Cancer support also offer emotional support
Emotional, financial and physical help for people with cancer | Macmillan Cancer Support
Perhaps when you go for your bone marrow biopsy tell them how you are feeling and I have found that they supported me.
Please do keep posting how you are doing and feeling
Personally (I am not a medical person)I would say really look after and be kind to yourselves.

Thanks Erica. I did see my doctor and the reassurance was that my feelings were more anxiety than symptomatic due to shock. In my second week I have felt much better, still very tired late afternoons and the odd night sweats by my appetite has improved. I am still positive about drinking boiled water with a dash of lemon juice…. Seems to flush the system and I feel much better drinking water than caffeinated drinks or even decaf drinks. Juices work well too.
My bone marrow sample was taken last Wednesday and I have had a call to say the results will be back next Monday (week today) so thankfully not the 4 week waiting in limbo as first thought. I will post an update when I get the results next Tuesday x.

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Hi @Dee24

Welcome to the forum, I’m also glad you’ve found us as a place of support at this time - it’s so very understandable that you’ve been experiencing such strong feelings.

It’s great to hear you were able to see your doctor and get that reassurance. Anxiety really can be debilitating as Erica has said and can affect you physically. I just wanted to pop on here to also post our information about wellbeing, which has some more ideas about looking after yourself: Blood cancer: mind and emotions | Blood Cancer UK The relaxation exercises may help if it’s affecting your sleep, for example, and there is also a link further down the page to self-refer if you do decide that talking therapy may be something you want to try.

Take good care of yourself and do reach out to our support line if you want to talk anything through.

All the best.

Ali

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