Good evening all, I have recently been diagnosed with Chronic myeloid leukaemia. I attended a private scan on Sunday the 9th June as I have been getting a lower abdominal pain (I’d say close to where my ovary area is) and wanted to check that all was ok. The sonographer wasn’t concerned about that area but mentioned my spleen was a little larger than she’d like to see. I drove straight to a&e where they took my bloods and told me why white count was 190 - I had no idea if this was normal or not at the time until the haematologist arrived and told me his suspicion, I’ve had no other issues so I’m still not accepting this illness very well. I feel like it’s scuppered my life just when things were going ok for me at last. Did anyone else have symptoms? I still can’t believe I have this, it’s turned my life upside down.
Hi @CarlaWild
I am so sorry you have had this shocking diagnosis.I have a different diagnosis but can relate to how many different feelings you experience with a blood cancer diagnosis.
All you are feeling is completely understandable and you will need time to process it , I remember feeling scared and then angry , the whole gamut of emotions.
People on here are really helpful and we are always here to listen if you need to vent . Give yourself time to process everything and please be really kind to yourself
Sending best wishes
Thank you for replying, I feel so alone. I know there’s so many people around me to talk to but I just know that they can’t feel what I’m feeling. Hospital have been great and really quick at getting me on my medication for it so I hope it starts to work it’s magic soon. I’m hoping someone on here can tell me how long it took for them to notice a difference in energy levels or for blood count to come down, although I know everyone is different. I just want to be back to work and having a normal life x
Am sure there will be someone who has the same diagnosis and can give you some wise words and advice
It does feel really isolating when you are first diagnosed as it feels like no one can understand how you are feeling and what you are experiencing. I find the people on here really helpful especially when I am struggling
Take care
Hi @CarlaWild Thanks so much for posting so honestly you are now part of our forum family.
I have found that it often doesn’t matter what our diagnosis is many of us share share the thoughts, feelings, emotions and practicalities.
Just reading your post brought back how I felt when I was diagnosed.
It was a gynaecologist that told me I had Chronic lymphocytic leukaemia (CLL) and all I could see was those words in fluorescent lights.
I came home and wrote my will and funeral music
I felt in a bubble, with the whole world going on around me.
I did think that I would never see my son grow up, get married, have children etc.
I thought my days were numbered, I would not be able to earn money.
I was in shock and that lasted a long time.
I had not had a day off sick in 20 + yrs.
I was diagnosed 20 yrs ago and I am still here and life is good.
Yes, it has changed my life but the bonus has been that it has made me re-assess my life and what and who are important to me and the best things in life are free like family, friends, nature, wildlife, music books etc.
To be honest I had been going through life on autopilot and I was getting a bit materialistic.
The Blood Cancer UK support line is there for you on 0808 20880 888
Be very kind to yourself and please do keep posting
Thank you for replying. I am finding it difficult being away from the life that I know so well. I feel a fraud being off work because on the outside I appear absolutely fine (albeit a little more tired looking that usual). My family are booking me in to have pamper days and I know my colleagues at work are all so stressed and I’m at home moping around. I asked my consultant about going back and he needs me to have a month to ‘let this sink in’ and I’m a police officer so I think work will be concerned about my mental and physical state when I do end up going back. I feel lucky that I can be treated but I feel robbed of a ‘normal’ life. I picked my prescription up yesterday and when the pharmacist said something about me being a cancer patient I wanted the world to swallow me up. Me? A cancer patient? I felt like he was talking to someone else. My family are amazing and I love them so much but they are mollycoddling me and my partner does not know what to do or say to me, he feels guilty leaving me to go to the gym for an hour to clear his head and then in turn I feel guilty that it’s me that’s making him feel like that.
So glad I have found this group x
Hi @CarlaWild, I too received a recent diagnosis having not had particularly bad symptoms so it felt a lot like a bolt from the blue.
I felt the days after diagnosis were the worst because there were so many questions and so many scary thoughts. I found things much better once I had a full consultation with the consultants and we had a treatment plan in place and I was able to switch to focusing on each step at a time and felt much more positive about the journey. Hopefully once you start getting the answers on what your treatment journey is likely to look like you will feel the same.
I can’t seem to let it sink in, I feel normal but then all of a sudden it hits me and I’m bursting into tears and worrying that with all the testing they’re going to find one thing else wrong with me and then I read research and it seems to make me feel a million times worse than I originally did.
Today o told my grandma of my diagnosis and now I feel guilty of upsetting her because she doesn’t deserve to be upset.
It’s a lot to take in and your reactions are normal we have all been there
It’s making sense of it all
Stop researching for now the internet isn’t always up to date and I found most research is on extremely poorly people
You rarely see the positive stories
Family members are going to be upset that normal and they will want to do everything for you as they don’t really know what else to do.
Encourage your partner to keep on with his day and that you will call him if you need anything
I’m a single mum and didn’t want my kids to be my carers and encouraged them to live their life and I would tell them when I needed anything
I think grandma would be more upset if you hadn’t of confided in her so don’t feel guilty.
Take her some flowers and chat with her she will want to help you too even if it’s an ear or a hug
It’s the small things in life that matter
Have you access to counselling I found it really helpful and diagnosed with PTSD due to a life changing diagnosis
Hope that helps
@CarlaWild welcome to the world of “What the #”*$ has just happened"
Not long after I had discovered this site after my diagnosis with Polycythaemia vera (PV), and talking to people away from the site, I started this thread. How did you react to your diagnosis?
One thing that came out is we all react the same and differently. People would have us believe in the various five, four or twelve steps of realisation/acceptance etc or reading the online buff, we are all 60 to 65 when the cancer hits.
60-65 is just the average age of when we finally get a diagnosis normally because all other avenues have been exhausted. Earlier than that, it takes some other course and you get a medical person who just happens to be more switched on regarding cancers.
This is your journey or dance with your cancer, a break up with the person you thought you were, hence the tears and a realisation you have to still live with this lump of stardust and water after it has let you down, hence the lack of trust in yourself.
People around you have to give you the space and support to find the new you and at the same time, work out how they fit into this new direction your body has decided to take you on.
When I told my dad and brother, in one way I was lucky, Dad is a prostate cancer survivor and my brother lost his partner to cancer during lock down, so both had already had an insight into the zone of helplessness that family and friends fall into.
It helps to provide them with clear details of the cancer, share the pages from this site regarding your cancer type, rather than letting them reading Doc Google. It gives you a new shared language (inspired by IKEA furniture names mostly) that helps build bridges.
Be honest about yourself and to yourself.
Just being honest with someone and say, “nope, I am having a really hard day, fatigue, emotional, symptoms etc” but give them something to hang on to, like “just give me an hour or so and I will ring you back, or come back this afternoon, yes, thank you , I appreciate you offering to do the shopping, speak to someone etc”
I have discovered it is like having to learn some frantic Scottish country dance like the reel, the steps are there for you to follow, seem crazy and frightening and to be done at speed, but once you allow your self to surrender to the music and trust your feet and others dancing with you, it does get easier.
Good luck with the journey
Hi @MikeB I really agree with your post and I think time helps so much as well.
Please do keep posting how you are doing
Look after yourself
@CarlaWild it will sink in but give it plenty of time and be ever so kind to yourself.
Perhaps googling and research are not your best friends at the moment.
I read that I had a life expectancy of 5 - 10 yrs and 20 yrs later I am still here and enjoying life.
Your grandma’s reaction to your news sounds normal to me, but I bet she would rather know.
We are here for you as we have felt as you do.
Be very kind to yourself, take it a day at a time (I know easier said than done) and keep posting xx