Has anyone else's symptoms started off quite vague?

Worried you might have a blood cancer?
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Hi everyone,

I’m hoping it’s okay to post here. I’m currently waiting for some tests and finding the uncertainty quite difficult.

Over the last few months I’ve been feeling unusually tired, even after a good night’s sleep. I’ve also noticed I seem to bruise more easily than I used to, and I’ve had a few episodes of night sweats. I know these symptoms can be caused by lots of different things, but naturally my mind has started to worry.

I have an appointment with my GP and I’m trying not to jump to conclusions, but the waiting is proving harder than I expected.

For those who did eventually receive a diagnosis, were your symptoms quite subtle at first, or did they come on more suddenly?

I know everyone’s experience is different, but I’d really appreciate hearing how things started for you while I wait for some answers.

Thank you.

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Hi @zar6

Waiting is always difficult.

As you rightly say, symptoms are different for everyone.

I went in to see my GP as my belly button was sitting a bit funny.

He took a look and said what’s going on with your side.

Turned out I had an enlarged spleen and diagnosed a few days later with Myelofibrosis a rare blood cancer.

So no real warning that any issues.

Fatigue and bruising definitely needs checking out and hopefully blood tests will give some insight as to what might be going on.

Take care

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Hello @zar6

Welcome to the forum and thank you for taking time to send on your post.

It is certainly okay to post here, and we welcome it.

I found the period between tests and diagnosis seemed to go on for a long time, but looking back it wasn’t that long at all given the various tests I had done etc.

Waiting is the hardest part I found, the not knowing is horrible, wondering what’s wrong, if anything is wrong, and if so what happens next.

Please remember you can call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.

Our phone lines are open:

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Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.

I hope everything goes okay, and do feel free to let us know how you get on

Kind regards

Mike

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Morning @zar6
Welcome to the forum. The waiting period for tests is often the hardest part, so go easy on yourself.

Symptoms can show up in very subtle ways. When I was diagnosed with Non-Hodgkin lymphoma ('NHL') eight years ago, it was actually found by accident—I had what felt like indigestion, and a scan initiated by my GP picked up a very large mass in my abdomen. It just shows how differently things start for everyone.

Seeing your GP to get bloods done is the best step. There are plenty of everyday reasons for fatigue and bruising, so try not to jump to conclusions while you wait. Let us know how you get on.

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I went to the GP with headaches also had unusual bruising a few weeks previously. They took bloods and I was called back in I thought I was going in for migraine medication. Turns out someone in the lab noticed that my lymphocytes had been high for several years whenever my bloods had been done so they put my blood under the microscope and the cells were abnormal. Several weeks later I Was diagnosed with chronic lymphocytic leukaemia I hope you get an answer soon and are ok

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Hi @KayC great to hear from you again, how are you doing now?

Look after yourself

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Hi Erica

Not too bad. 4 years since diagnosis still on watch and wait. Had a scare in January when we were in Japan as part of a Cruise. This holiday was booked prior to diagnosis or we wouldn’t have booked it It was cancelled twice due to covid then my husband needed surgery. Last day at sea I went down with severe pneumonia both lungs potentially life threatening if not treated quickly. I was treated on the ship and when we docked I was blue lighted to the nearest hospital in Yokahama where I spent 5 days ruined our holiday but at least I got through it. Just shows how vulnerable we are with Chronic lymphocytic leukaemia ('CLL') ! I’ve been working with leukaemia UK quite a bit and am a community champion now. Have settled into retirement took a while I have to say 46 years as a nurse then I’m not ! It’s like an identity loss but I’m ok now 6 grandchildren now so keeps us busy. I hope you are well x

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Yes, @KayC I am OK it is all the the conditions I have gained along the way, some Chronic lymphocytic leukaemia ('CLL') related, some not. Yes, you certainly had a wake up call there and I think all the scarier in a foreign country far away from home.

Yes, I also found retirement was a loss of identity for myself. When I met people they would ask my name then what do you do. Little did they know I seem to have no available time now, I still end up rushing around.

Wishing you both good health and look after yourselves

I am sure that you will make a brilliant Community Champion for Leukaemia UK

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Thanks Erica good to hear from you x

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