Late diagnosis, nothing seems to change

As many of you know due to a relapse in my ppcl myeloma I am currently receiving a new round of treatment at my local haematology clinic and subsequently having contact with newly diagnosed patients. It has saddened me to hear of the same old stories of them tuning up at their gps will worrying symptoms and being sent way without even a appointment for a routine blood test, instead just given the catch all diagnosis of a virus. Obviously they get worse, it’s then the walk in clinic and inevitably the accident and emergency department usual af the point of critical illness with acute blood cancers. In one a case it took 4 months to diagnosis acute lymphoblastic lymphoma, this despite several serious symptoms. I write this post because I have come to believe that the only way to overcome this level of ignorance is to educate the general public so they can be the driving force behind getting a diagnosis for a blood cancer and that it’s simply not going to improve if we leave it in the hands of inexperienced gps and and a and e staff. The patients I have spoken to instinctively know something is wrong but due to their own lack of knowledge allow themselves to be talked out of being more forceful in asking for the blood tests required. I am very lucky to be alive today as i was at total kidney failure when diagnosed and I want better treatment for future patients as I am now terminal and not expected to live for much beyond 6 months and want to make a small contribution while I still have time and make a contribution to the debate before I go. Let’s all stiffen our resolve to raise awareness of this subject whenever we can as it seems the battle with ignorance is far from over. Thank you all for reading this post and stay strong. Alfie.


Hi Alfie, I am always so inspired when you show your caring for others and for making the diagnosis and treatment of others more effective.
I just agree with your post 100%. I know Bloodwise and other blood cancer charities have been really campaigning for early diagnosis, especially during Blood Cancer Awareness month last September with government, the health services and in the media. But the message still needs to be shouted louder, especially as you say with many blood cancers a blood test (with the patient’s others presented systems) is all that is needed. Thanks for this post and I await the experiences of others, Thanks for caring.


Diagnosis is, as you say Alfie, challenging especially as blood cancer symptoms can be missed or assumed to be something else. It is difficult to ask for a test or to push for more testing if you’re being told everything is fine when you feel that it isn’t but can’t necessarily articulate why. Bloodwise are working on this, awareness raising is key. Thank you for raising this.


Hi Alfie. Your experience is the reason why I never shied away from speaking to medical students when I was in hospital. I felt like cheering when one student asked if she could use my case for a 4th year presentation. She even arranged to take photos as I waited to go into theatre. Hopefully more than one life has been saved since then. Take care xx


Hello everybody and thank you for your replies. Interestingly I was at the fracture clinic having my arm X-rayed and the operation to pin it back together has been a big success. I did notice when waiting to be be seen a big poster talking about osteoporosis in the over 50s, coincidentally multiple myeloma patients are often sent down this diagnostic pathway when presenting with back problems and can waste many months going down this route before being referred to a hemotologist, it’s just another example of the lack of knowledge amongst general practitioners. With multiple myeloma it is quite common to have vertebrae involvement so you can see why gps out of ignorance might jump to the wrong conclusion and not even consider an alternative diagnosis, this is compounded by the fact that the median onset age is 65 in mm. just a small example of why things can go wrong at an early stage I thought you might find interesting.
Best wishes

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