World Blood Cancer Day 2026 - Celebrating this community

[Ceri_BloodCancerUK]

Today is World Blood Cancer Day - a day observed around the world to raise awareness of blood cancer and the millions of people it affects. To mark the day, we’re turning the spotlight on this community. We would like to know:

Has the forum made a difference to your experience of blood cancer, big or small?

You can share your thoughts in the comments below, or if you’d prefer to respond (even more) anonymously, you can fill in this short form instead.

Anything you share will help us do three things: celebrate this community, show how vital the forum is to everything Blood Cancer UK does, and reach more people who might need it. We’ll be sharing your words more widely - including during Blood Cancer Awareness Month in September - so that others can find this space too.

So thank you - for showing up, for replying, for asking questions when it felt scary, and for sharing parts of your experience that you didn’t have to. This forum is what it is because of the people in it.

P.S. If you haven’t already, it’s worth checking out Blood Cancer UK’s social media today (we’re on Facebook and Instagram as there’ll be activity there throughout the day.

[DuncanB]

Thank you for creating this post @Ceri_BloodCancerUK

I came fairly late to the forum. Despite that I have nothing but praise for everyone here.

I’m really pleased that everyone can benefit from the experience of others through the good and not so good times without judgement.

There’s several people on the forum who have been contributing much longer than me including @Duncan @Erica @2DB @Jimbo165 and many others.

They are always ready to share experiences and highlight resources that might help.

And of course there’s the wonderful @BloodCancerUK_Nurses and @BloodCancerUK-SupportTeam who are there to offer specialist advice.

Finally we should celebrate the wonderful work those do behind the scenes researching and looking for treatments and innovations that might make all the difference to everyone dealing with blood cancer

[Duncan]

I love that you shared this dear @Ceri_BloodCancerUK, happy world blood cancer day to you and anyone else reading! Long may we be here to celebrate.

This forum, what would we do without it?! It’s been such an invaluable place for me since I found it here on the same day I was diagnosed with Polycythaemia vera ('PV') in 2023.

The forum has honestly made a huge difference to me tolerating living with an incurable, chronic type of blood cancer. Finding people here who truly know how these sorts of diagnoses can make us feel, how treatment can affect us, and how isolating these sorts of illnesses can be helps to keep me motivated to live as well as I can.

At times when my own specialists were not helping me understand what I’d been diagnosed with I found that help here, and I am so grateful to everyone who I’ve been fortunate to interact with. Thank you folks, too many to name! Personally, I have found great relief in being able to share my experiences here while at the same time supporting others.

Like dear @DuncanB says, I also want to shout-out the incredible @BloodCancerUK_Nurses and @BloodCancerUK-SupportTeam who keep the forum running, warmly welcoming, and so supportive with the emotional and medical aspects. It’s such a rare treat to have actual specialists choosing to be right here supporting us, thank you all

So, happy world blood cancer day to all, but especially those of us affected by the big C who make this forum such a very special place.

[Erica]

Hi Ceri and all

I am thinking of everyone affected in some way with a blood cancer in the world today.

Our support forum has changed my experience of being diagnosed with a blood cancer as initially I felt that I was the only person in the world with a blood cancer and now I have people, who I am proud to call my forum family, from all over the world.

[Spangleystar]

What a question @Ceri_BloodCancerUK.

Has this forum made a difference to my experience of blood cancer?

100% YES.

I stumbled across this forum after looking at other forums and social media groups. This forum is so different in many ways, firstly it is run by people with access to validated information from medical professionals, people who know what and how to say things and are also comfortable to just sit with you. It is an open accessible, non judgmental space. It is governed well. It is anonymous. Data Privacy is deeply important.

I wasn’t ready to ‘come out’ in Social Media terms, joining any groups (even private ones) came with a level of visibility- links and connections that I wasn’t comfortable with. There were intrusive questions and a lack of boundaries on Facebook groups. Other dedicated forums not on Facebook I found low engagement and questions left unanswered.

Next there is the community, I never expected the level of support I have experienced over the last 6 months. The kindness, warmth and love that exudes here is simply incredible. I no longer feel that I’m alone with this weird cancer that came out of nowhere. I feel part of a community that lifts each other up and I’m so proud to be here.

I’m not scared of what the future holds, because of this forum, the accuracy of information, excellent advice, privacy, team of expert support and medical professionals and the community gives me peace and comfort xx

[Willow]

Thank you @Ceri_BloodCancerUK for highlighting World Blood Cancer Day and for giving us an opportunity to comment on how this forum has made a difference to our experience of blood cancer.

When I received my diagnosis in 1992 there was nothing like this, not even a booklet for me to take away. I remember being given my medication which was very potent but it didn’t even come with a patient information leaflet. I was just told to go home and take it the next day. I felt very isolated, frightened, shocked and confused.

If only this forum had been accessible to me. I know now that I would have found others who would have understood and been able to reassure me because they would have probably experienced the same emotions even if their diagnosis wasn’t exactly the same as mine. Also I would have had access to the wonderful Blood Cancer Forum Support Team and volunteers, as well as the Blood Cancer UK Nurses who have a wealth of knowledge and understanding.

Apart from the benefits I have gained from this forum, it has been encouraging for me to have the opportunity to share and hopefully reassure others who maybe are feeling how I was soon after my diagnosis. It makes me feel that what I have gone through isn’t for nothing if I can use my experiences to help others in some small way.

Sometimes it’s not easy to share with our loved ones how we are really feeling but we can come to this forum and be honest without fear of upsetting anyone or adding to their distress. For me this is invaluable.

Willow x

[Nichola75]

Blood cancer is always on my mind but even more so on World Blood Cancer Day.

I’ve been following Eastenders this week. What a great storyline. However, I found it a harder watch than I thought I would. Anybody else?

The forum for me is just a space to really be able to say how I’m feeling and know that others will understand. Without that I think I would’ve driven myself a little crazy.

Giving back as a forum member is something I value so much. Volunteering alongside amazing people and making some great friendships along the way.

Life would be a lot harder without you all and the hard work the forum does

[2DB]

The family you never knew you needed
To all of us that contribute in any way we can here on the forum are the best. It feels like a huge hug when you see familiar names and faces like your safe space and somewhere we all know what each of us is going through
Thank you to @Ceri_BloodCancerUK for seeing us.
@BloodCancerUK-SupportTeam for all the work you do behind the scenes
@ClinicalTrialsSupportService for keeping on eye on the latest trials
the volunteers that keep an eye on us
To each and everyone your are special in your own ways keeping being the lovely you

Welcome to anyone that finds themselves on the forum we will be with you shortly

[Jimbo165]

Good afternoon @Ceri_BloodCancerUK and everyone else on this amazing and so very helpful forum, hope you are doing as well as can be.

Apologies for my “comms blackout” but I am now back home after my visit away to Essex. The pampering is over and normal service has been resumed already!

I can answer the original question with a resounding YES.

I was diagnosed back in March of 2018, following so very many blood tests after my (to date!) first heart attack in September 2017, culminating in a late night phone call from LRI inviting me to A & E to see a doctor at 00:40hrs! Quite an eye-opening and mildly disturbing experience.

I joined this incredibly supportive group in August of 2021, so I had been scouting around for a safe, sound and supportive place to seek guidance and help, and also to offer my own experiences. I found one, this one, and was welcomed by @Erica and many others, people whom I have never met, but feel “at home with” through a shared or related medical matter. No one is ever judgemental, only ever supportive. There is a vast range of experiences, along with personal “tips and tricks” of things that have worked fro individuals and that may be worth a try for others with similar difficulties.

Personally speaking I am much more able to be fully honest about how I feel, how things are going, and any fears about the future, with my Forum Friends than I have ever been with my own daughters, for fear of worrying, or exacerbating their worries, whilst they all lead their own busy lives. Whether that is selfish of me or not, I don’t know.

The forum has been invaluable to me and I am so grateful to have found it during the early (ish) days of my own blood cancer journey.

Thanks go to all of the @BloodCancerUK_Nurses, @BloodCancerUK-SupportTeam and all of the Forum Support Volunteers.

As always, take care, stay safe, be kind to yourselves and keep on smiling.

Best wishes,

Jimbo165

[simon.p]

I’ve only been using the forum for about 6 weeks having been diagnosed in 2024, and came across it in my search for other members of the trial I’m on. Haven’t found any yet but have been able to support a few people who are considering joining it, which felt nice. A very positive experience

[Katiep]

This forum was a godsend for me when I first got my diagnosis because it meant I could find out more information from people in the same position as me and also get helpful advice. It really has been a lifesaver for me mentally so thank you.

[DottieB]

Hi thanks for creating this thread @Ceri_BloodCancerUK

I found the forum after looking through a booklet that was given to me at my official diagnosis appointment and am so glad I found it

The people on here are great and it’s been so helpful. It’s great having a place to ask questions at anytime of day or night . The kindness and support both from the blood cancer team and contributors is just brilliant!

Thank you

[Sisi]

@Ceri_BloodCancerUK Like others have mentioned thankyou so much for creating this post. I cannot imagine what I would have done with out the support of this wonderful forum & my blood cancer family It’s made a HUGE difference From the moment my husband was diagnosed in Oct '24 & I nervously posted for help / advice here, I was so warmly welcomed by others. It’s been my go to place to share & express my concerns on what’s been an incredible roller coaster of a journey, this last 18 months. Knowing I have such a warm friendly & supportive group, means the absolute world to me & I’m forever grateful to those of you that continue to support me & my husband. I couldn’t have done it without you all!

[Byrnebaby]

I wondered where to begin with my post as all the comments have basically covered everything I could say, but I’ve decided to start at the beginning -

Going through tests in the lead up to Christmas and totally in a panic, cancer? Blood cancer? What the heck?

As a social media user I turned to Facebook, typed in myeloma, and was directed to the very same group @Spangleystar found, a private group, great!Ill be able to ask questions, nope ‍<-> I wasn’t allowed to join until I had a full diagnosis, but was completely reassured by admin that ‘this is the best cancer you can get’

So I had all the books given to me upon diagnosis from myelomauk, as said, the forums really aren’t used much, and to be honest the information on there and in the books was just too much to take in at the time, information overload, maybe even denial

I did a Google search and stumbled upon this place, and it has become my second home, I know I can log on, see my friends, chat, always someone here (and if not, they will get back to you) I can ask stupid questions, breakdown ( I frequently did) even break the news of my dad, and was instantly supported ( something not even involving blood cancer) the support both on the forum And behind the scenes is truley amazing and I’m forever grateful for the gang who step up and keep me grounded and not naming names, but, sharing the RADAR trial with has been fantastic ,

Now please do the wonderful thing you do and get me through my Stem cell transplant!

[Jonpd]

I was diagnosed with post Polycythaemia vera ('PV') myelofibrosis in 2023 after 25 years of Polycythaemia Vera during which I was able to live a normal life.

At the time of my myelofibrosis diagnosis I was quite unwell and desperate to find more information about my cancer and where I was headed. I came across the BCUK website and forum which have been a great source of information. The first person I “met” was @Erica and then @Duncan.

The forum comprises a fantastic group of people and there is always someone to answer a question whether large or small. Thank you all, not forgetting the BCUK staff and volunteers.

[Hepzibah]

It was a serendipitous moment when a post for Blood Cancer UK - Crafting Fund Raiser- popped up on my Facebook page fairly recently.
I have known that I had an odd blood condition for a couple of years or so, but it was only earlier this year that a diagnosis of Complex Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') was given to me. My consultant thought this was a more positive diagnosis than the one previously given, but after I had read a little and discovered the ‘dreaded’ C word, I wasn’t so sure.
I took to searching the internet for more information, and trying to avoid Dr, Google i.e being selective in which sites I read, but I may have been too specific in my searches too because what little information I found was not exactly written in layman’s terms. I was however becoming aware that not all blood cancers are equal, and that there are so many variations: symptoms; names and acronyms; overlaps; potential and actual treatments; outcomes. There was a totally new vocabulary, part of which might be useful to my own circumstances, but not really sure which.
When I followed through to the Blood Cancer UK website, I found information that was well laid out, in more layman’s terms. The information was useful, and it was a site that I would happily share to my friends and family should they wish to gain more information for themselves (which would probably also be more understandable than the update emails they receive from me).
Of course, no one expects or wants to receive a diagnosis of cancer of any sort, and blood cancer is no different, but it is encouraging to know that you are not alone. Whilst your specific diagnosis may be very different to another persons diagnosis, we do all need the support and understanding of each other, and from professionals in the field. The Blood Cancer UK website, and forum does much to achieve this.
I am learning that sharing our own situations can also be a way forward to helping the professionals: the haematologists, oncologists, researchers, Specialist Nurses, etc. learn more about the various conditions, how they affect individuals, and help them move forward with understanding the patient and treating the condition.
So, on World Blood Cancer Day 2026, I would like to join in celebrating this particular community - a community that has made me feel welcome, and more comfortable with my particular blood cancer condition. Thank you.

[Gillyj]

Hi @Ceri_BloodCancerUK and everyone else on this link- I was given a booklet when first diagnosed 3 years ago which mentioned this forum and it has been a life changer. As @Jimbo165 says - you can be honest here about how you’re feeling, something I can rarely be with family and friends. There are some friends who really want to listen but a lot of them don’t- everyone has their own troubles don’t they! I have shared experiences, had a laugh, helped others and generally feel part of a blood cancer family. The biggest help I got through it was to hear how long everyone was living, with blood cancer , which gave me hope after my consultant told me I only had a 10 year life expectancy . So thank you blood cancer nurses and everyone who keeps this forum going

Gillyj