I wanted to share my experience and see if anyone else has been through something similar.
Before my diagnosis, I started noticing that I wasn’t feeling like myself. I was constantly exhausted, even after resting, and I found myself getting ill more often than usual. I also noticed things like unexplained bruising, night sweats, and losing weight without really trying.
At first, I put it down to getting older or being run down, but deep down I knew something wasn’t right. After speaking to my doctor and having tests, I found out I had blood cancer.
I’d be interested to hear from anyone else who has been through this journey. What symptoms did you notice first, and how did you cope after your diagnosis?
Hello there @zar6, thank you for sharing your experiences with blood cancer symptoms, I’m sorry to read that you’ve not been feeling like yourself. I see you’ve shared a few other posts recently and am glad you found the forum.
May I just ask what you’ve been diagnosed with so we can direct you to the right information to support you. Forgive my confusion but you’ve said in your various posts that you’re awaiting a diagnosis but also received a blood cancer diagnosis, is that right?
Just let us know what information would be helpful right now and I’m sure the forum can support you at this confusing time.
I see other forum members have shared the number for the lovely Blood Cancer UK specialist nurses and would urge you to give them a call to talk through anything medical you need clarifying as we forum members can’t offer medical advice.
You can also let us know in any of the threads you’ve commented on of any support you need and we can try directing you to it.
The early days - pre diagnosis - were some what confusing. Loss of weight, I welcomed as I was deliberately trying to loose weight so that was good. I didn’t feel any different, only perhaps a little bit tired but i put that down to an irregular sleep pattern coupled with a lot of DIY.
I am Chronic lymphocytic leukaemia ('CLL') patient, and of of the side effects is fatigue, and it now makes sense as i often need a nap during the afternoon or early evening.
In short, I didn’t really notice any symptoms at all. Just thought it was my age.
As for coping post diagnosis, my family were and are great, initially very upset but very strong and supportive. Beyond that i took some talking therapy, and this helped me, from my first session where I was in tears and could not string a sentence, to my final session where we laughed at the world!
Now, I enjoy a weekly coffee morning with a local cancer charity here in York and also some compilatory therapies they offer. The centre is open every day and I often just pop in to see a friendly face and have a quick chat. Beyond that, of course, we have our forum where we can all reach out and support each other.
My next thing is to take up Tai Chi - I fancy the calm strength it appears to bring and the social aspect also appeals to me.
Do look out for such things in your local area, its always good to see what’s out there.
My diagnosis came out of the blue. I had been looking after my Dad and when he died I was emptying his bungalow, sorting the funeral etc. I did not think I was particularly tired, had no bruising etc. I did have gum bleeding and was getting lectured about cleaning and flossing etc by my dentist which had never happened before. Over a week I developed acute pain in the appendix area and was sent to hospital as probable appendectomy case. As soon as they took bloods they came back for more and then more again. Each time someone spoke to me they were new and more senior. After a scan they found a very enlarged spleen and I was admitted. The pain hit worse and it turns out that I had a blocked lymph node in my stomach area which burst in the night. So many mutant white cells had caused this. I felt a lot better then but then the leukaemia journey began with bone marrow taken at 4.00am and dispatched to a London Hispitsl for diagnosis.on motorbike.
I have since spoken to many others who felt fatigued and had bruises etc at the earliest stages. All I had was a strict dentist. My leukaemia was in the blast stage too so it just shows how individual we all are. I was so lucky with a smart GP, a swiftly acting hospital, an early bird motorcycle transport and a London Hospital Clinic who agreed to test even though most staff had gone on their Christmas Holidays. I was also back home for Christmas Dinner with several boxes of pills.nine years later I am still very grateful for my nhs at its finest.