Hi @MaggieLT a great big welcome to our forum
Thanks for telling us a bit about you.
I really look forward to working with you and look after yourself
1 Like
Thanks for the warm welcome @Erica - I look forward to working with you too! Enjoy your Sunday
1 Like
Hi All, I am here as part of the Forum Support team and I am new! I am 18 months into remission from Non-Hodgkin lymphoma (NHL) B-Cell and want to share my experiences with others who have found themselves in similar situations or indeed to support your family. I am really looking forward to being a volunteer and helping others.
6 Likes
Oh @McVey a great big welcome to our merry band and I look forward to hearing more about you.
Look after yourself.
2 Likes
@McVey welcome aboard! Iâve only been an FSV for a few weeks but really enjoying sharing my thoughts and experiences 
3 Likes
Wow, what a journey you and your family have been on. I thinks itâs great that you are now able to support others X
2 Likes
You are definitely not on your own now you have your forum family x
4 Likes
Welcome to the forum. So great to have some new volunteers who can share their experiences and support others x
3 Likes
Hello everyone, 
so grateful to have discovered this forum. I am an English speaker residing in France so not everything will apply to me but the general questions will.
I have been bone tired for more than a year. When getting my second sick leave for a cold I canât shake, I asked for blood tests hoping to find a vitamin deficiency or at worst a thyroid problem. So the seriousness of sky-high lymphocytes has been a shocker. The doc actually didnât say âleukemiaâ at my appointment but didnât realize I would know what âChronic lymphocytic leukaemia (CLL)?â on my test referral meant. There are a few other acronyms with question marks on the test referral, but I have decided not to google them to keep worry at bay. One day at a time (already the first pearl of wisdom I have found on this forum.)
Well maybe you can already see my personality is the âtry to keep two steps aheadâ type, voracious reader and have to understand everything, so instead I must also learn to go with the flow.
Anyways thatâs enough about me, thank you to everyone for sharing your experiences. It has already been so reassuring to read about âwatch and waitâ, for instance. I had no idea some blood cancers could take that form. Thank you. 
5 Likes
Hi @Calathea a great big welcome to taking the brave step of actually posting on our forum, you seem to have gained a lot of information already.
I do not want to repeat what you have read as my story is out on the forum many times.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago and I have been a very lucky girl and been on watch and wait ever since.
Some people require treatment straight away others at various times.
I think I have learnt how individual we all are and how many different things are taken into account when consultants consider the way forward for us. Treatment options are more targeted to the individual now too.
As you say treatments and their timings vary country to country.
I have a friend in the USA and she was diagnosed at the same time as me and treated straight away, she is now in her 90âs.
If you have any questions please ask me.
I look forward to hearing more about you, do you have any support?
The best thing you can do is to really look after yourself and be kind to yourself.
3 Likes
Thanks so much, Erica, yes your experience was particularly heartening, as is the one you just shared about your friend in her 90âs. I have a small circle of friends but family is far away, unfortunately. The hardest thing might be the cultural differences because I tend to find French doctors rather old-school, their way or the highway, donât question them etc. But I will persevere until I find the right specialists for me. I am lucky to be near Paris where most specialists are concentrated, I believe.
3 Likes
Thanks @Calathea yes, keep persevering and posting, I expect we will understand on our forum, You will never be alone now.
Take care of yourself
2 Likes
Hello to everyone ! Im Nina and im new here, not sure , if its the right place to introduce me, im sorry. Im 40, from Moldova and havenât got my diagnosis yet. In the spring 2023 , due to high level of platelets in my blood ( 750) I have an examination by hematologist , Ive made Jak2 test ( positive), and now Im waiting the result for biopsie.
I would like to find support and dont know what else , im frustrated, , confused, because here my doctor doesnât explain me what it is and what to do . I only have read information about this disease in internet, with a big stress.
Thanks , im sorry for my language.
4 Likes
Hi @NinaSt you have posted perfectly.
Perhaps write all your questions and ensure you ask all of them when you see your haematologist.
What I would say though is that different countries approach diagnosis and treatment (or not) in different ways and have access to different drugs
Perhaps the internet can be a confusing place with information from all over the world.
Please do let us know how you get on and it must be stressful for you and take lots of care of yourself
2 Likes
Hi @NinaSt. I can tell from your post how worried you are. @Erica has given really good advice. Write down all those questions ready for your next appointment. Itâs really hard but one thing Iâve learnt is that you have to be assertive. Write everything down and if possible, take somebody with you to the appointments.
Please do let us know how you get on
3 Likes
Hi, Iâm Alison.
My husband is going through treatment for Waldenströms macroglobulinaemia.
There donât seem to be many on here with this type of blood cancer but Iâm reaching out incase Iâm wrong, just looking for others in the same situation.
2 Likes
Hi @Bongobirdy a great big welcome to our forum and you are now both part of our forum family.
I hope people with Waldenström macroglobulinaemia (WM) will post on here.
However I have found that it often does not matter which blood cancer we have, whether we are a patient or family member, we often share the same fears, thoughts, feelings, questions and practicalities.
I attach the Blood Cancer UK website details on Waldenström macroglobulinaemia (WM)
Waldenström macroglobulinaemia (WM) - what is it, symptoms and treatment | Blood Cancer UK
I look forward to hearing more about you.
Look after yourselves and please do keep posting
2 Likes
Hi, my wife has been diagnosed with leukemia in 2020. Iâm scared to lose her, but we are enjoying every minute of our time.
4 Likes
Hi @Abaziz0786 I am so glad that you have found us, welcome.
I would have thought it was very tough for you both with your wife being diagnosed during Covid times.
You say that you are scared which seems very natural to me for you both to be.
Perhaps you and your wife write down all your fears, questions and practicalities and talk to her nurse contact, GP or consultantâŠ
Personally I was going through life and thought it was all mapped out life with my son getting married, having children etc.
Now I realise that everyone in this world only has this moment.
Your philosophy sounds good to me.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago and I am still enjoying life.
My diagnosis gave me the opportunity to look at my life and what did I want to do and with whom. I now think that the best things in life are free, like family and friends, nature and music etc.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
I look forward to hearing more about you both, so please do keep posting
Be kind to yourselves and look after yourselves
5 Likes
Hi @abazix0786
It can be so scary when somebody close to you is diagnosed. My husband felt the same as you.
I think making the most of everyday is so important. And when you need some support - as we all do - we are here for you
3 Likes