Living with Blood Cancer

Hello,

My diagnosis of blood cancer came as a thunderbolt, shattering my reality into a before and after. Every day is a fight, a delicate balance between hope and despair. The physical symptoms are just the tip of the iceberg: the fatigue that washes over me like a relentless wave, the bruises that appear from the slightest touch, and the infections that my body can no longer fend off with ease.

But it’s the emotional toll that’s the heaviest to bear. The uncertainty of tomorrow, the fear of the unknown, and the feeling of being a burden to my loved ones. Blood cancer is not just a disease of the body; it’s a shadow that looms over every aspect of life.

I share my story not for sympathy, but for awareness. Blood cancer is a formidable foe, but together, we can fight it. Research, funding, and bone marrow donations are the weapons we need to win this war. So, I ask you to join me, not just for my battle, but for all those who fight silently alongside me.

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Good afternoon @yvonne910rhodes, and everyone else, I hope that you are okay and enjoying the slightly better and warmer weather.

I think your post is one of the best I’ve read as you have encapsulated the day to day difficulties that we all face.

I was diagnosed with Essential thrombocythemia (ET) a little over 6 years ago now, following on from a heart attack six months earlier, and have been on Pegasys injections since April 2018.

Fatigue is far and away my biggest side effect, closely followed by unwanted bleeding and bruising, poor appetite and occasional feelings of being overwhelmed by the whole thing.

Stay safe, take care, keep on smiling and remember to be kind to yourself.

Jimb165

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Hi @yvonne910rhodes and welcome to the forum.
You describe so well how many of us feel. The emotional toll of
living with blood cancer can sometimes be harder than the physical.
I know when I was first diagnosed I just couldn’t get my head around it. It felt like a dark shadow hanging over me.
As time has gone on I would say that I have found many coping strategies that help, the forum being one of those where I can say exactly how it is and know people will understand.finding activities that really calm me down - that’s swimming for me and knowing that when I’m having a bad day it’s ok to be kind to myself.
It’s a long journey isn’t it but I’m glad we all have each other and the wonderful forum, researchers and charities that are working so hard to support people like us and look for that cure!

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Hello @yvonne910rhodes, welcome to the forum! I’m glad you found us, it sounds like you’re having an understandably uncertain time with blood cancer. Like dear @Nichola75 says, you’ll find people here who really know and empathise with your uncertainties and the emotional toll these blood cancers can take.

Just wondering, might you find even greater support from folks here who share the same or similar diagnosis as you? For me, finding others living with Polycythaemia vera (PV) and its related MPNs really helped me feel less alone with the emotional and practical aspects of surviving it all. I know there are others here who have such rare blood cancers that finding anyone at all to share notes and compare treatments with can feel very supportive.

I’d like to second dear @Jimbo165’s comments by saying I really like how you wrote about your experiences. Share and share alike, I say. Looking forward to hearing more about how you get on!

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Hi @yvonne910rhodes I am so glad that you found us and as others have said you describe so many of our emotions and thoughts so well.
If you would like to get any information on your blood cancer and dealing with your symptoms please do look at the Blood Cancer UK website
Yes, I think the uncertainty of what we felt was mapped out in life does take time with heightened thoughts and emotions.
I am a walker and Pilates girl which I find therapeutic.
Personally I would say to give yourself time and be ever so kind to yourself and please do keep posting…

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yvonne910rhodes, hello I just wanted to say that I fully understand your fear of the unknown, I think everyone who has an illness has that fear in some shape or form. Side effects can certainly wear you down both mentally and physically . It can be exhausting pretending you’re ok, as you don’t look ill when you actually feel rotten. I also do not like the feeling of maybe being a burden to my loved ones, but then I think if one of them was in my position would taking care of them be a burden and no it wouldn’t. I wish you well and I hope that you find this forum as welcoming and as supportive as I have.

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Hello @yvonne910rhodes,

Welcome to the forum :smiling_face_with_three_hearts:

You’re definitely not alone in your thinking. I’d say we all have days when we manage our feelings and days, when it’s more challenging.

The people here, on the forum, are always so helpful, so if you’ve any questions, call the specialist nursing team or pop on a post, and avoid google.

I find it so reassuring to read posts from others living with blood cancer and hearing about their experiences, and help with treatment/ side effects.

Enjoy the good days and rest when you need :slightly_smiling_face:

I know everyone here, on the forum, will be with you on your journey. Keep us updated please.

Take care xx

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Thanks to all of you for your support and positive response. I happy that you all understand my difficulties.

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