Share your experiences to help us raise awareness of blood cancer

Hi everyone!

One of our strategic priorities is to raise the profile of blood cancer, so it’s as well known as the other 5 most common cancers. After speaking to our wonderful community we have 6 key reasons that outline why this work is so crucial, however, while we have lots of anecdotes and statistics that support these reasons, we’ve gotten to a stage where we need to collect more in-depth case studies.
With this in mind, we were hoping our lovely forum members might be so kind as to share their own experiences with any of the below reasons that resonate on this thread.

We need to raise the profile of blood cancer, because…

1) People diagnosed are less likely to understand what is wrong with them. (For instance, many people aren’t told they have a type of blood cancer and are left to connect the dots for themselves)

2) People are less likely to be diagnosed quickly (For instance, low awareness of blood cancer symptoms combined with multiple GP appointments often lead to a delayed diagnosis)

3) People affected are less likely to access the support and services they need (For instance, people may not realise they are entitled to free prescriptions/parking, employment protections and disability benefits etc)

4) People affected are missing out on being part of a supportive community (For instance, if people don’t know they have a type of blood cancer, they don’t know that they belong to a bigger tribe outside of their individual diagnosis)

5) Research is not being funded at the right level (This alludes to the fact that the biggest breakthroughs happen when we’re looking across different types of blood cancer.)

6) Blood cancer doesn’t get enough political focus (This alludes to the fact that blood cancer doesn’t get anything like the same attention from the government or the NHS because it is often considered as a number of separate, rarer conditions)

Share your thoughts below :point_down:


Hi @Alice_BloodCancerUK
My experiences as follows, hopefully useful for the campaign.
My MGUS found incidentally, GP didn’t have time to answer questions but I was directed to information on Macmillan and Myeloma UK websites, which was frightening. Googling for further infòmation just increased anxiety. I was told I would be referred to a heamotologist but could wait a long time to be seen. I booked privately to be able to ask questions and get some understanding and he referred me back into the NHS for ongoing care.
I have low risk MGUS at present but I have extreme anxiety around every blood test at result. The consultants I have had contact with are dismissive about my anxiety and one even laughed at me. I find CNS and other nurses have more compassion. I know they are all overworked but some broader understanding around the effect of watch and wait every 3/4 months would be helpful.
As you state in your breakdown, general broader awareness and understanding across the general public and medical professions. I had never heard of MGUS or many of the blood cancers I have now come across on this forum (and I worked in a hospice for many years) and I have had nurses and my dentist ask what it is when filling forms or updating medical info.
And of course raising awareness will hopefully increase funding for research. I have just signed up to the OxPLoreD research but my hospital research facility relies on a charity to fund the research department. I found the information for the OxPLoreD study on your website and volunteered, but had to push to get my team to agree.
Hope the above helps with your campaigning. Let me know if I can do anything further.


The one thing that I would love to happen is that there is a dialogue with dentists and hygienists.
The clearest sign of my leukaemia was that for the first time in my life ( other than in pregnancy) I had an issue with bleeding gums. I was lectured about this and passed onto a hygienist.
When I was being diagnosed I was asked about bleeding gums.
I then went back to my dentist when my next check was due and gently told her that my gums were a sign of my leukaemia. She was very dismissive and I reassured her that I was placing no blame but was keen that she shared it with the other dentists in the practice. It was very obviously not something she had heard of.
It would be so good to know that dentists have this as a possible cause of gum bleeding and could point people to their family doctor if it is a new problem when a patient has had good hygiene and no issues in the past. My leukaemia was diagnosed at an advanced stage and I feel it could have been other than this. I presume there are dental magazines etc for dentists and it would be wonderful to share the information if it helped just 20 people each year reach an earlier diagnosis.


Hi @AllyBally

Thanks so much for taking the time to share your story! I’m really sorry to hear that some consultants have been dismissive about your anxiety. Please know that you can always reach out to our support services to discuss anything that’s on your mind - big or small, we’re always here to listen and support you as needed.

From what you’ve written, it sounds like your case study could be really interesting for the campaign we’re working on. Out of interest how much were you told at diagnosis, and how much did you have to find out for yourself? For instance, did anyone say verbatim “you have a type of blood cancer” or did you have to connect the dots for yourself? The reason I ask is we know that 76% of people affected aren’t told at their initial diagnosis meeting they have “a type of blood cancer”, and we’d really like to bring this stat to life as part of the campaign.

Thanks again for sharing your story with us via the forum!

Best wishes,

Lindsay Toone, Brand Marketing Manager, Blood Cancer UK


Hi @LindsayBloodCancerUK
Thankyou for your reply.
My diagnosis was incidental as I had a year of an array of all sorts of problems following COVID. Recurrent infections, trembling, fatigue, numbness in feet, reactions to all sorts of medication, and I told my doctor I felt there was something going on with my immune system. Eventually I had to have surgery for a cyst to be removed over my coccyx! Not nice🤣. The blood tests were to see if they could find out what was going on and various things were mentioned from MND, lupus, and long COVID, to mention a few. When the bloods came back with suspected MGUS my GP told me briefly that it was a pre cancerous condition, where 1percent a year go on to develop multiple myeloma. I was a little shocked by the cancer word but she didn’t have time to go into detail and sent me links to information at Macmillan and Myeloma UK websites. So set me off on finding more info. She told me she would refer me to heamotology but suggested I would have a long wait. My mum kindly paid for me to go privately to see a haemotologist as I was extremely anxious. He did say that at the time he wasn’t too worried by my results and referred me back into the NHS saying that with my results I would be seen quite quickly. He did answer some of my questions but kept saying that lots of people have MGUS which never develops.
Interesting you ask about whether I was ever told I had a blood cancer as sometimes online MGUS is referred to as a blood cancer and other sources say it is a benign condition, until it isn’t. I would be interested to hear how you categorise it?
What I have found challenging is that while things are stable everyone says I need to look at the positives. Friends, family, doctors, consultants all agree that I am lucky to be being monitored (which I know I am) but don’t seem to understand the grip of fear every time I have a blood result or a new ache or pain. I have always been a positive, think ahead sort of person but there are some days I wish I didn’t know so I could just get on with things.
Let me know if you need anything more from me as I am passionate about raising awareness and moving things like research forward.
Thankyou for reminding me about the helpline, it’s great to know it’s there.

1 Like

Hi @AllyBally,

Thanks for being so generous in your response, this detail is really interesting. Apologies, I got carried away with the “type of blood cancer” question, you are right, we also categorise it as a blood condition. I’ve pulled some copy from our website to help clarify our take on this:

“Monoclonal gammopathy of undetermined significance (monoclonal gammopathy of unknown significance (MGUS)) is a blood condition that happens when plasma cells (a type of white blood cell) develop unusually in your bone marrow. monoclonal gammopathy of unknown significance (MGUS) in itself isn’t harmful and is unlikely to make you feel unwell, so it doesn’t usually need treatment. However, we know that a small number of people with monoclonal gammopathy of unknown significance (MGUS) (1% every year) go on to develop blood cancer. Because of this, you’ll have regular blood tests to check that monoclonal gammopathy of unknown significance (MGUS) isn’t developing into blood cancer.”

Thanks again for your insight, it’s lovely to hear how passionate you are about raising awareness. I’ll be sure to get in contact once we’ve made a decision on which stories to take forward into the campaign.

Best wishes,



Hi… I was diagnosed with Chronic lymphocytic leukaemia (CLL) in A&E. I had come up in a rash and also had blood blisters in my mouth, this was the reason I went to a local ‘cottage hospital’ via 111 who then sent me to the Acute Trauma Unit. I was in A&E all day where I was finally diagnosed with Chronic lymphocytic leukaemia (CLL), I was told on my own (due to Covid) in a waiting room and then left for 7 hours whilst they tried to find me a bed. The reason I was admitted is that I had platelets of 4. I was admitted to hospital where I remained for 3 weeks. The priority was definitely my platelets as I had every treatment possible and nothing was improving them.
Whilst in hospital I was pumped with numerous drugs, I was not told what they were for or what the plan was for my treatment.
The challenge I faced was that I was treated as a statistic, so found myself to be on a formulaic journey of treatments (for platelets) none of which work, bearing in mind in week 2 they still had not discussed the likely treatment for the Chronic lymphocytic leukaemia (CLL)
The only point I got any traction in hospital was when I refused all drugs until somebody could inform me of the plan.
I started my treatment shortly after my intervention although I do believe they were waiting for funding to be approved. I was put on venetoclax which is a ramp up treatment and has to be monitored closely due to kidney challenges,
Interestingly they released me on Christmas Day and my platelets were only 2… and I was only day 3 of treatment ramp up…! So why was in hospital for all that time when I was released with platelets lower than when I went in?

I have been on this journey for just over a year now, with treatment finishing a few weeks ago. I am still unaware of the outcome, as I have not spoken to my consultant for 6 months. I have not been for blood test for 3 months and have not been informed by anybody what is the plan for establishing the results. With the help of websites such as this I have managed to educate myself on my condition and whilst by no means an expert, I am managing to own my journey. That said, I do not know what I don’t know and I have had no guidance or support from the healthcare team.
I am finally meeting with my consultant next week where I will state that a little information does go a really long way when you are only 15 months on your blood cancer journey.


Hi @MichelleAndrea a great big welcome from a fellow Chronic lymphocytic leukaemia (CLL)’er.
Gosh, what a lonely isolated time you have had.
As you say a little information goes a long way.
I have to write down all my questions before I go because even after 19 yrs my mind goes blank when I walk into a medical building.
I have also learnt to be ‘pleasantly assertive’.
Perhaps don’t leave until you feel all your questions have been satisfactorily answered.
It might be worth asking for a key specialist nurse contact’s details.
If you would like to talk to someone the Blood Cancer UK support line is on 0808 2080 888
Look after yourself and please do let us know how you get on you are now part of our forum family.

Hi Alice,

Thank you so much for this post (apologize in advance as my reply may be a lengthy one)! I’ve been preparing myself to post here for a while now, but just never got round to it, and now I’ve seen your post I felt it’s certainly a sign :slight_smile:

I’ve been diagnosed with ET in September 2022, and like for many others, it’s taken a while to actually get the official diagnosis (I’ve suspected it for a while by then). My story started in March 2022. I was feeling rather unwell (couldn’t eat and didn’t dare to be away from the toilet longer than 10 mins, which made working and just existing rather difficult), so I’ve had an appointment with a GP, who has kindly organized some tests (blood test included) and due to the results of those tests, I got referred to haematology (platelet count was 1600) and gastroenterology. The haematology referral was cancelled as they believed this is a gastro issue, and gastroenterology has given me a date for a colonoscopy for July. There was no way I could wait that long, so I’ve arranged treatment for myself abroad in the first week of May. There I have been diagnosed with ulcerative colitis, received medication (steroids etc.) and information about the condition etc. and I was very grateful I knew what I was dealing with and hoped that as a result my platelet count will decrease (although I was somewhat suspicious as I did not think that even UC could elevate platelets that much). 2 weeks after the diagnosis I had a check-up with the gastroenterologist abroad, and she’s asked for a blood test. The platelet count was 900, so she suggested that once back in the UK (I had to come back as I’ve used up a lot of my holidays for this trip) I needed to see a haematologist. That of course made me do some research and gather information (my brother in law is a surgeon and I, by default have a very inquisitive mind), and whilst I’ve been careful not to self diagnose ,I started to be more alert when it came to detecting possible symptoms. Once back in the UK (June)I’ve shared my results from abroad with my GP and they’ve kindly arranged for another blood test, and around August re-referred me to haematology. (July was spent with trying to get myself back in the system in the UK, because whilst I thought I was doing the right thing by seeking quicker diagnosis with the UC abroad, as it was done abroad, despite my medical documents from abroad, I didn’t have care assigned to me in the UK, so it was a monthly struggle to get my medication + I also had a lump in my breast that needed checking which thankfully turned out to be benign in the end). After the initial ‘basic’ blood test, I had a consultation with the haematologist and he’s ordered a more complex test to be done (which was to look for JAK, or CALR etc. mutations). When the results have arrived I had another consultation, and I remember walking to the hospital…I was very hopeful that no mutation was found, but deep down I knew one doesn’t just happen to have such high platelet count for a sustained period of time…so when I entered the room and the haematologist has explained that I have a CALR mutation, I was not even shocked…just disappointed. I’ve then been given a blood cancer booklet to read. I read it, just to see if there was any new information in it, but as I say I will have read a lot about this topic months ago, so I was aware of the symptoms etc. but the reference to supporting organizations was very handy, as up until this point I have not even considered anything else (forums, groups etc.), apart from the factual information regarding what’s actually happening in the cells when this condition occurs, what is the process, what are the remedies/treatment plans etc. A few days later I’ve also realized that whilst I’ve been given the booklet and we’ve discussed my gene mutation we’ve actually not called my condition by its name. So I thought I had ET, but then I was wondering if I really do, so on the next consultation I’ve asked for confirmation and my haematologist has kindly confirmed that it was ET indeed. I was on watch and wait till now (and very much hoped I’d stay there for years to come) but my platelets are just steadily increasing (currently at 1300) so we are now considering some form of treatment come the end of May. Unless the platelets decrease (which I keep telling them every day to stop misbehaving :slight_smile: ). My haematologist is brilliant I have to say because somehow, even without many words we understand each other. We discuss my results, I’ve got access to it in the EPR system, and so as I saw the trend being an increasing one I’ve already been thinking about treatment options and I thought if it came to it I would go for interferon, and during my last consultation that’s what my haematologist had on his screen, so as soon as I saw (and he’s also suggested it verbally) I was relieved.

Getting others to understand what’s happening though is…I have to say a bit tricky. I’m trying to keep it simple (as we know there’s a lot of things regarding these conditions which require some dwelling into the detail…it’s not like someone with a broken leg where people can see what’s wrong immediately), but it’s a bit of a balancing act really. Some people that I know are worriers, so with them I don’t even call it a blood cancer, I just say it’s ET, and then they say they’ve always known I’m a bit of an alien and I find that helps to take the edge of it :slight_smile: Others that I know are level headed, I try to explain a bit more, but even for them because I look fine (and actually I am fine apart from a bit of fatigue here and there etc.) it can be a challenge to really understand what’s happening, or even why I am sharing if I’m fine (they don’t mean it negatively just aren’t sure really what they can do, or if they should do anything or how to help etc. but that’s also probably down to me too because my big worry is that I may make people uncomfortable, or that they think I let them know about my diagnosis because I expect them to do something which cannot be further from the truth…it really is just because I’m sharing…I’m a sharer :). So in the end I stopped telling people and I found solace in coming on this forum and reading the experiences from others…and I was and am really grateful for this forum, because it helped me so much to feel…understood…and included…even if I haven’t posted before…reading the topics and posts from others who are going through similar things, just certainly made me feel like being part of a tribe (whilst before the forum it felt more like a warrior in a jungle just cutting that dense vegetation every day :slight_smile: ). Interestingly though…since Tom Young has shared his experiences on BBC Morning news yesterday I’ve had friends message me , letting me know that they weren’t even aware that there are so many people how suffer a type of blood cancer and I felt hearing someone talk about it on TV (linking it also to a very personal experience) was just an eye opener for a lot of people.

So I believe all the points you’ve mentioned in your post are very valid and I certainly can identify with all of them.

Thank you very much for the patience (to read my story) and also for this really supportive community. It’s really helped me a lot having access to this forum, personally as well as I found it very informative and just a lovely platform full of lovely people.


Oh @Dkamar I am so glad that you have taken the courage and time to write about what you have gone through in the last year.
I also like to just read posts to give me a feeling about things first.
You are now really part of our forum family.
Your medical language is so much better than mine and I was diagnosed with another blood cancer 19 yrs ago.
I also found it so difficult telling family, friends and work as I could not explain to others what I did not understand myself.
I have also been diagnosed with skin cancer and I was so upset with the dermatologist as he waffled on about chemo and radiotherapy after the op and in the end I had to say is it skin cancer then.
I love your turn of phrase and I look forward to hearing more about you and how you are getting on. Look after yourself


Hi@Alice_BloodCancerUK thank you posting this.
I would like to share my experience
Of being diagnosed with MGUS .
I have since “joined the dots” myself to discover it is a plasma cell disorder and a precursor to blood cancer ,Myeloma possibly
I had a blood screen 2018 for immunoglobulins serum protein electrophoresis via the Neurologist who was looking for an explanation for my neuropathy.
This was repeated after 6 weeks and only showed miniscusal level,no further monitoring ordered.

A year later 2020 I asked for a repeat the level was 2 .80 IgG kappa detected.

Result came back from the lab with a request for skeletal lytic lesions ,Bence Jones proteinurea anothe FBC,lymph glans check and spleen enlargment check also discuss with Haematology.

To say I was floored was an understatement as I had seen a GP a few days before to c/o about back pain and the result went unoticed.I was told to go come back to see my own GP to discuss pain releif re my back .

My GP apologised for the oversight

He proceeded to go ahead with an exam and ask questions if I had night sweats etc.
I asked him to write down what he was looking for with repeat blood test ,a raised band -1gG kappa region,Potentially would =Monoclonal gammopathy of uncertain significance -MGUS

I went for repeat bloods ,Urine ,negative, bloods satisfactory.
Haematology ordered a serum free light test as I didnt have a light chain she was reassured that no more investigations were required.
I was not reassured.
Also she said not to do the skeletal xray as i’ d had a back xray 2019 showing arthritic changes.
To cut a long story short after another year
I asked for the serum protein test to be repeated
Known IgG Kappa pataprotein

So my GP agreed to test in 6 months then in 3 months so after a result of 8.70
,he wrote to the Haematology Dept and was advise to continue testing every 4 months and given info on what to look out for ,and so it goes on .
Last Nov I was interested to know if I had a free light chain and was more than shocked to know I had and that my Free Kappa was high
Kappa:lambda Ratio 2.988 abnormal ,so now I am low /intermediate risk
both still rising
Ratio 2.988
Low I know but goes to show it was there doing its thing .
At first I think because we were going into lockdown I was seen as not being a problem and I think the fact that I pushed for more tests has shown the importance of monotoring .
During lockdown I kept with 12 week testing as I was also getting VitB injections so it cut down the visits but now I am going 4 months.
That is my story so I hope it helps .
There is more but think thats all for now .