It’s a shame these things take so long, do let me know when you find out more! Do you know what kind of blood tests haematology ran and have you had a bone marrow biopsy? I haven’t come across anyone else experiencing the same as me, in the same age bracket. Thank you very much Eli, I will keep you all posted! Best of luck to you too, do keep us updated 
x
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Hi @Mdm2020, please keep saying how it is to be you on this forum and I am not getting away from the fact that you are 21 yrs but I often find on this forum we seem to share similar fears, thoughts, feelings and some practicalities.
We are here to support you.
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Hi, it’s me again @Mdm2020, on the Blood Cancer UK website under the heading Support and Advice is a section titled Young Adults with Blood Cancer which might be of interest to you.
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Sorry it is me again but I have just seen there is a post on this site titled Blogs from young people, which might be of interest to you.
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Hi @Mdm2020
I was diagnosed with myleodysplastic syndrome, which is a rare blood cancer, just over three years ago. Since then I have been having GCSF injections twice a week to boost my white blood cells and neutophils and I’m glad to say my condition has remained relatively stable. I’m lucky to have a great haematologist and CNS looking after me and I see them every 12 weeks when I have a full blood screen.
I think I had been suffering from MDS for quite a while as my wbc and neutrophils had been low for around a decade. Unfortunately I’d been living in a separate part of the country and the haematologist I saw there didn’t think it was anything to worry about despite me having continuous infections. When I moved to where we live now the haematologist I was referred to took a very different view and arranged a bone marrow biopsy. Fooling this immature cells (or blasts as they are referred to) were observed together with a genetic abnormality commonly found in MDS. Lucky for me I moved to my new job or things could have turned out very differently. All in all, while I have to be careful to avoid contracting any infections I have a pretty good quality of life and feel I have loads to be thankful for. I was really glad I found this forum as I’ve found it to be a great support and I’m sure you will too.
All the best, Peter
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Hi @Mdm2020, we hope you’re keeping well during these challenging times. Do call and reach out the Blood Cancer Support Service Team if you want to talk about how you are feeling and what you are going through. Waiting for results and consultation appointment can be a worrying and difficult time for some people and we want you to know we are always here for you.
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I will! Fingers crossed it’s just because they were less common tests, and I can’t imagine the strain labs are under right now considering the pandemic!
I’m afraid I can’t remember all of them (there was a lot!), but I know in addition to basic ones such as a FBC and things looking at igG, igM , and IgA (which are to do with the immune system), albumin and globulin (blood proteins), and a full vitamin break down.
I’ve not had a bone marrow biopsy yet, as the haematologist I spoke to wanted to get the blood tests first. If they show improvements in my WBC and neutrophil levels, then he just wants me to keep getting regular tests until April and have a follow up appointment then, but if they show my levels to be the same or worse (or any issues with the immune tests they did!) then he’d want to move forward with a bone marrow biopsy.
I hope this helps! I was feeling very unsure as to what tests would be involved, which of course led to anxiety, and it’s difficult to find things geared towards a younger age bracket!
Best wishes! 
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Things are not too bad for me at the moment. I’ve been in remission from Myeloma for about 2 years now and can live a fairly normal life (Covid aside!). If the pandemic hadn’t happened last year I would have spent a lot of time travelling and enjoying my freedom. Having cancer has taught me appreciate any experiences and fun I get more than I would have. Not sure how much remission I get but I’ll make the most of it. Keep in touch.
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Hi everyone,
I finally have an update of sorts! After nearly a month, my blood tests results have finally come back.
I’m really relieved that they’re back, but they’ve left me feeling more confused and anxious then I was before, unfortunately! Whilst I do know a fair bit about some blood results due to my chronic health conditions, some of these I haven’t got a clue about! My neutrophils and WBC are both as low as they were before, but now my RBC has decreased, too, as well as my Hb and PCV levels. My albumin and total protein levels are both high, my SFLLC (whatever that is!) is low, and the IgA is low whereas the IgM is high…basically, I’ve got no clue what’s up with my blood, or as to what any of it might indicate. Of course, I’m not asking anyone here to make guesses, and know I need to be patient and wait to hear from an actual doctor, but it is all quite overwhelming and confusing.
I suppose on a very tenuous silver lining, it does explain why I’ve been feeling physically drained and pretty exhausted recently.
All of that said, I don’t really know what my next steps are. My GP has suggested some of the live function tests be redone, but other than that, it’s all out of their hands because technically this falls under the haematology consultant. I haven’t heard from them since my first appointment, when they requested I have these tests done, asides from a letter arranging a standard follow up appointment in April.
I guess I just have to wait and see if I hear anything from them, but I’m assuming I would have by now and they’re probably just waiting until my checkup in April.
I hope everybody here has been doing well and coping okay with the current lockdown - I’ve been thinking of you all, and give my best wishes to everybody!
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Hi @plutoeli. I am so sorry that you are even more confused than before and feeling so physically drained and exhausted.
So you are going to have some tests redone and that you have an appointment with the haematologist in April. When you first said April that seemed so far away and then I realised we are nearly half way through February already !!
I am also finding my appointments are further into the future than I was expecting but then I realised that Covid times are really meaning that there is such a backlog of appointments.
I know waiting is so, so tough, the not knowing is the worst, but it will give you time to really get organised with all your questions etc. so you make sure you ask absolutely everything you want to at that elusive appointment with the haematologist.
In the meantime we are here to support you and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Be kind to yourself and stay safe.
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Hi @Erica,
Thank you so much for your well wishes. You’re totally right, April is actually a lot closer than it feels - I swear it was Christmas just yesterday, so I’m sure April will creep up on us sooner than expected!
That’s a really good way of looking at it - whilst the anxiety of not knowing is, like you say, the worst bit, I think it would be equally as scary if I had an appointment much sooner and had no idea what I wanted to discuss. I’m definitely going to use this time to write down my questions about what these latest tests mean or could indicate, and make sure I ask about next steps going forward. With appointments so (understandably!) spread apart, it makes sense for me to utilise each one as much as I can, so being prepared in advance will be a great help!
Thank you once again for your support and well wishes, I certainly feel a bit calmer now I’ve had some time to reflect on it all.
Best wishes!
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hi @plutoeli it’s so good to hear you’re feeling a bit calmer now and really hope it helped to talk through everything on your mind on here. And it sounds like you’ve got a really good plan in place in terms of preparing for any future appointments and getting the best out of them (especially during these times)
Did your doctor give any idea as to when you may hear back from the haematologist? or did it very much sound like this coming April will be the time when they touch base with you, and talk through any next steps then?
Look after yourself and please do keep reaching out,
Su
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Hi @SuBloodcancerUK,
Thank you, it really did help to be able to write down my thoughts regarding it all - it’s so easy to get caught up in your own head, sometimes!
I wasn’t actually able to speak to the GP myself, but as I understand it I do just need to wait until I have my follow up appointment with the haematologist on April 28th. I’m assuming, though, that if something on my bloods was very worrying or out of range, they’d make contact with me so that’s reassuring in some part!
Thank you ever so much for your kind words, and I wish you well!
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Hi Eli,
I’m glad you have finally been given an update on your results. I completely understand how you must be feeling, not knowing the reasons behind the low and high numbers is so frustrating. It’s good that your GP has suggesting redoing some of the tests - maybe some of the readings were a one off. It’s positive to hear that your WBC hasn’t dropped though! Finding a diagnosis (if there is one) seems to be such a long process. I have my first haematology appointment via telephone on the 24th and more bloods due to be taken Tuesday so we’re in the same boat here! Are you otherwise feeling well? My GP said at the end of the day numbers are just numbers and how your body feels is what’s important. Thinking of you! X
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I am so glad to hear - sorry for the delay in response, I’m trying not to spend too much time thinking about it all! I completely understand, even the thought of my low WBC being as a result of something sinister really makes you appreciate the little things. Take care Franko and I hope you remain in remission for a very long time!
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Thank you very much Erica, I appreciate it!
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I am so glad to hear that despite the diagnosis you are doing so well and the GCSF injections seem to be working well for you. Reading that you have a good quality of life and seem so positive makes me feel a lot more hopeful about my situation. thank you for your support and take care! X
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Hi @Mdm2020 - it must be such an anxious time for you. The other forum members have offered such good advice. I’m glad you found this forum to share. Sometimes it a life saver for me!
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hi @plutoeli i’m so glad to hear this helped! And I can completely appreciate the wait until end of April can feel incredibly daunting. But most importantly, you know where we all are if you ever need to talk 
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Hi @Mdm2020 ,
Thank you for your well wishes! It is frustrating and anxiety producing, you’re completely right, but in part it’s a bit of a comfort to know that’s why I’ve been feeling so exhausted and out of sorts recently 
It helps to know it hasn’t been completely ‘in my head’!
It’s certainly a long process, although totally understandable at the moment - I’m really glad you’ve been able to get an appointment, and have some more blood tests. Fingers crossed it all goes well for you!
I’m sure your appointment will go well, but it’s totally understandable if you’re nervous or worried beforehand - I’m sending you all the support and reassurance!
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