Multiple myeloma blood cancer
multiple myeloma blood cancer
Hi Alfie, all your points are so very valid and very timely. I believe raising awareness and early diagnosis are part of the key aims of Bloodwise at the moment and they are launching a campaign called ‘Hear our voice’ on 8th January 2019. Because there are about 137 blood cancers, presenting in different ways, with very different names and treatment paths it does not help. Often the symptoms can be attributed to many different conditions too. As you say a GP might rarely see a case of blood cancer. The one thing I personally think might help is for medical people to look at patients history and symptoms more holistically. I also think we can do our bit raising awareness of blood cancers locally at every opportunity. The Bloodwise support line details are above and I am sure they would be able to give you ideas of how to do this.
Thank you for your reply
Hi Alfie, good points. I really believe I know have become more of an expert about myself, my symptoms, conditions and feelings than anyone else, I have known myself longer !!! I also believe I need to take responsibility for myself by making sure I have a say in my medical matters, in an appropriate way. I find this site helps me understand through the experiences and wisdom of others, aren’t we lucky to have it.
Thank you for your reply
I also have Myeloma. My GP sent me for xrays because of the back pain. I had collapsed two vertebrae and developed osteoporosis. I went to an Orthopaedic Consultant who admitted me for tests but he was looking for a tumour. He brought in the Rheumatologist who was the one that tested for Myeloma.
I now run a Support Group for Myeloma patients and their families and friends. Although I support Bloodwise I also support Myeloma UK. You can find on their website support groups around the country. ( ours is West Pennine Myeloma Support Group).
In running the group I have been aware of the delays in diagnosis and have given talks to the local GP Pdactice and to medical students. I know Myeloma UK have produced a diagnostic pathway for GPS. I also know Bloodwise do a lot to bring Blood Cancer to the attention of the public and indeed to Parliament. I realise there is still a long way to go but there is work being done.
Not sure it worries me greatly that “the public” don’t know about blood cancers. I have essential thrombocythemia, look and behave perfectly normally for someone in their 50s/ 60s (apart from the 7 at the front of each birthday!) so unless I tell them, noone knows my condition. That’s the way I prefer it to be. BUT, I am one of the lucky ones whose GP immediately had suspicions when I showed up with acute vertigo and vomiting. She immediately got blood samples off to hospital and the rest is history. I hear so many stories of people who, like Alfie, present to their GPs with a range of symptoms and DON’T get tested. Not sure what can be done, other than flashing Bloodwise (or MPNvoice for us with MPNs) posters, literature etc. at every opportunity. Getting noticed in Parliament probably does nothing directly (we don’t have enough numbers to swing elections!) but it may actually help get publicity because every MP wants a photo-op that can be pushed the way of local constituency newspapers to help their profile and we get a bit of notice that way. Getting to GPs is always going to be difficult - too many still have a bit too much self-belief so don’t want to be told things by their patient oicks, and the whole lot of them are rushed off their feet anyway.
Hi Joan and @Alfie Apart from the CLL I also have osteoporosis and I have 7 healed fractures and now compressed vertebrae and I was told most of them were pulled muscles too, the fact I had lost 5 in in height appeared irrelevant. When the osteoporosis was diagnosed the consultant said ‘you must have been in pain’ !! I wonder if the 2 conditions are linked in anyway?
Hi Joan, thank you for your reply.
Hi, I enjoyed reading your post
I am sorry to hear about your osteoporosis
I agree, I don’t think Bloodwise is out there enough, it ought to be a name as familiar as Macmillan and cancer research but I don’t feel it is. Any campaign seems half hearted. Even the September campaign doesn’t have the impact it should
I concur with your post.
Hi, thanks for posting, have you any ideas how Bloodwise could raise it’s profile? If you have I am sure the Bloodwise support line would be pleased to hear from you, their details are above. I think it is a constant battle at Government level, nationally and locally. I do try and do my bit at a local level at every opportunity. I even wear a Bloodwise tee shirt at the gym, I am an exercising bill board and I certainly spark educating people !!!
It’s a numbers game.
According to Cancer Research UK there were 359,960 cancer diagnoses here in the UK in 2015 (the latest recorded figures!)
Of these 32,232 were blood cancers - so less than 10% of the total.
As all aspects of the media are profit driven (including the BBC??) they play to the biggest crowd when they have to cover the unpopular subject of the big C.
However none of this means that we should not try to punch above our weight. In fact it makes it more important that we do.
But then whilst I went public with my illness I remain VERY unsure (with the benefit of hindsight) that it was the right thing to do.
A difficult conundrum.
Hi Robin, thanks for your thoughts. How long ago were you diagnosed and why do you remain very unsure (with the benefit of hindsight) that it was the right thing to do to go public?
I was diagnosed 6 years ago.
Whilst I have a few friends, I have many aquaintantances; a moderate fish in a tiny pond.
I must confess that whilst keeping my condition private would have been difficult, I never imagined that I would receive such little understanding.
I was never after their sympathy and certainly did not want to hear (after the questions about my health) about their bad toe!
I felt judged, and in the meantime the vultures gathered.
Maybe it’s worse for a man to appear weak (sick)? I don’t know.
Hi Robin, it sounds a very lonely, isolated place to be in. I remember similar situations, but not to the extent you have encountered. Someone once said to me that people just do not know how to be or what to say to someone with a serious condition. Perhaps it is safe to tell you about their bad toe or perhaps by playing it down it saves any awkward moments and yes, perhaps (I apologise to everyone for stereotyping) they are more scared sometimes about really going near ‘feelings’ etc. with a man. I also felt I was defined as ‘Erica, the person with Leukaemia’ for a very long time. It is interesting that you say appear ‘weak (sick)’, I might turn it on it’s head and say we are the strongest people as we are dealing with our diagnosis, condition and life on a daily basis. Whilst not wanting to take away each others feelings I find it so supportive to know I am not the only one. I am so glad you had the courage to post on this community forum so honestly and I hope you will find it informative and supportive, Robin. Take care and keep posting.
Hi Erica, maybe we could get some posters made and have them distributed around our gps surgeries