Hiya, I’ve had abnormal bloods for over 6months now and my most recent ones are again abnormal and my GP is referring me for an urgent appointment (2week wait) at the hospital for suspected blood cancer. I’m very confused and don’t know how to feel and I don’t really know what to expect next? I would really appreciate it if someone could give me some advice on what happens next? Thankyou
Hi. It must be very worrying to suddenly find yourself in this position and I know that all sorts will be going through your mind at this point as you attempt to digest this as it did with me. If I can give you any advice, it would be to take things one step at a time and deal with my issue at a time. Wait until your tests have come through and you have got more definite information, then talk through the next stages with your medical team. I know I found it hard to know what to ask them, think about what you might like to know and write it down in preparation. Also you’re not alone. You’ve got all of us here at the forums and the excellent Blood Cancer UK support team are always available for you to talk to if you need expect advice. When you’ve got more definite information, they’ve got information booklets for just about everything. Please let us know how you get on and try not to worry. I know that’s difficult though.
Hi @Mumlife a great big welcome to the forum and you are certainly in the right place.
@Franko has given you very good advice.
It looks like you have been monitored through your bloods.
I know 2 weeks sounds a long time and perhaps it is not in NHS terms, but for you it will seem like an age. As we always say the waiting is the worst time, my mind goes off in all directions.
However as @Franko says take it a stage at a time and this 2 weeks will give you a slight chance to deal with the shock that you have had and you will be confused. There is no right or wrong way to feel.
You now have us to support you, do you have any support from family and friends and do you have children?
Yes, ask everything that is going round in your mind at your appointment and ask those follow up questions because we are not medically trained, take notes. An appointment is a 2 way process.
Please do let us know how you get on and in the meantime really look after yourself.
Wow honestly Thankyou so much for all of your replies! I’m literally in shock still and I don’t know how to feel about it all I’ve had a few panic moments and I just didn’t expect it tbh. I think I will definitely give the support line a call tomorrow. I’m trying not to google too much but I couldn’t resist. It’s where I found this forum so I’m thankful I did! I have a partner who knows how anxious I am of health problems say to me there’s no point in worrying until we know exactly what’s going on etc. Which I know is true but my mind can’t help but worry, and I’ve got 3 children but they are very young a 10 yr old, 6 yr old and a 2 yr old so I’m petrified of this whole thing. I again Thankyou so so much for your replies and just hope the two weeks fly by and my appointment comes through and I know what’s happening soon.
Hi @Mumlife it is natural to be in shock and panic moments are certainly not unusual.
Yes, perhaps it is best to await your Doctors and not go on Dr Google !!!
When I was diagnosed I went to the internet and it gave me a 5-10 yr prognosis and that is 17 yrs ago and I am still having fun.
Sometimes our nearest and dearest want to make it better for us (and them) and not many of us can just stop worrying. It is so natural, it’s the not knowing.
We understand each other as we have been where you are now.
Perhaps children, no matter how young, pick up on their parents feelings and anxieties.
Look after yourselves and keep posting.
You’ve already had several really good replies, but I just wanted to add my support for you at this challenging time. As others have said, two weeks sounds a long time, but it will soon pass if you try to find a few small things to do each day that take your mind away from the anxiety.
Remember that blood cancer is a huge collection of conditions - until you get a clear diagnosis you should certainly steer well clear of Google.
I was diagnosed over seven years ago and have been on what’s called ‘active monitoring’ or ‘watch and wait’ . . . no treatment, just keeping an eye on my bloods every six to nine months. Writing down your thoughts, fears, anxieties etc., will be really useful for when you go to the hospital and try to take someone with you, so they can help to remember what’s said as it’s a lot to take in, and you may not remember it all! This group is really supportive, so stay cool and ask away . . .
Hi @Mumlife, the forum is such a supportive community and you have some brilliant advice and replies. Please do give our support line a call if we can be any advice and support during this difficult time of waiting until your appointment.
It’s easy for us all to say don’t worry, it’s obvious that you are confused and in shock. Please try and stay calm and as all others have said, do go armed with questions and be prepared to write down the answers you are given. I remember when I went to see my consultant the first time, I was quite rude and told him he’d made a mistake; he couldn’t possibly be talking about me???
Here I am nine years later, still on what we call ‘watch and wait’ which basically means you do not need treatment yet. Please take care and when you do get your appointment please let us know how you got on. If it’s any consolation, I do know people who have been told to ‘pack a bag and be prepared to stay overnight’ - so if you have a two week wait maybe it will not be as bad as you are imagining. Best of luck to you and your family.
I have to echo what everyone has said. The C word is such a powerful word to hear and will bring thoughts of past experiences or expectations of cancer like a bus hitting you.
Ive learnt that they can test for so many things from your blood that a abnormality can be triggered by recent events or a dripping tap into a beaker that’s ready to over spill.
I know the next two weeks are going to play on your mind and you’ll be preparing and planning for the worst which is normal but do keep your mind busy til then.
Worrying and preparing for a bad thing that doesn’t happen may a mistake and worrying and preparing for a bad thing that cannot be stopped may turn out to be a regret… So do things that make you happy til the time comes and after continue doing those things.
There are some brilliant people on here that will offer you support in an abundance to get you through this, so regardless of the outcome you will never feel alone.
Thanks to all of you! My anxiety is through the roof and I am trying to hold it together. I totally understand that I should just wait for the appointment without worrying but that’s so hard to do at the minute! I actually got my appointment today for the 13th so its not forever away but I feel it’s far enough. I will take my questions as my bloods have been abnormal for quite some time and nobody could tell me why! I suffer from other conditions and I’m thinking maybe it’s not any of them and is something else completely! But honestly all of your replies have been really helpful and I am truly grateful
This maybe a good or bad idea…
You know you can access your access your blood results if they were ordered through your GP. And then you can see specifically which test(s) are abnormal and by how much.
By checking my bloods I discovered my potassium count was high… and that was because I started going to the gym and having at least two bananas a day… Soon as I cut it out it went back to normal level…
Obviously I’m not medically trained and Google is no diagnosis but it may ease you anxiety but then again increase too
Hiya yeah I’ve already got access And I’ve googled And yeah I know that my Platelet count, white blood cells, Neutrophil count, Lymphocyte count, Eosinophil count, Serum C reactive protein level, Haemoglobin A2 level, Mean corpuscular volume (MCV)& Mean corpusc. haemoglobin(MCH) these are all abnormal either high or low. So yeah I still don’t really understand 100% and j know only a doctor can tell me exactly what’s going on but I’m petrified and I feel like the 13th is way too far so I’m going to call up in the week to see if there’s any cancellations and if so can I have it. I have health anxiety already amongst other mental health issues so hoping I can just try and stay calm until my appointment. Thankyou for your advice I really appreciate it
Ah definitely feel your anxiety which is totally understandable.
That sounds like a great plan of trying to get a cancellation appointment. Be sure to say when you do ring up how you are feeling and the effects its having on you. Whomever speaks to you be sure to make sure they make a note on your records how you feeling and the anxiety as hopefully, fingers crossed, your consultant/doctor sees this and tries to go out their way to see you when they read the notes.
Look after yourself… And though it’s easy for me to say… Stay strong… You got this
Hi @mumlife, yes, only some of us really understand our blood test results, the norms and how to interpret them, I don’t.
It does take your medical team and they take so many things into account when making a diagnosis and whether treatment is required or not or more blood or other tests are needed at certain intervals (called watch and wait or active monitoring).
Unfortunately I find that waiting seems to be par for the course and that is so, so horrible.
This might be worse for you if you have health anxiety and you can always try for a cancellation and tell them about your mental heath and health anxiety issues and feelings and get it recorded.
If you have to wait for the 13th you have us here to support you and the Blood Cancer UK helpline is also there for you, their details are above.
The important thing is that you look after yourself.
I’m so sorry you’re going through this horrendously stressful time.
You asked what you can expect. Well, this torturous waiting is one aspect, but I think you’re right to try to get an earlier appt. Unfortunately, waiting will become a bit of a thing.
You’ll have blood taken at most appts. I hope you can tolerate that. The phlebotomists are generally very skilled and gentle. Unfortunately, blood tests have to be analysed before you see your consultant, so with a blood health issue, there is usually a bit of waiting around at appts.
You may have to have a bone marrow biopsy. People tolerate these differently. It’s a procedure at the hip. I’ve had four, and they’ve been ok. It takes about 15 minutes.
Depending on the immediate results, you may also have to wait on some blood samples being sent elsewhere for genetic testing, which can take further time (a few days.)
I got a partial diagnosis after a biopsy at my first outpatient appt (after a short hospital stay for a blood transfusion.) So once the ball was rolling, I did get answers quickly. Then I had to wait a few more days for genetic and other results, which gave me the full diagnosis.
The consultants understand how shocking it is to be told you have a health problem. In my experience, they were very gentle and compassionate, and give you the information you need at a rate you are likely to be able to absorb it. They also provide literature. They may also introduce you to a specialist nurse. They can signpost you too to other people/agencies that can help you with side issues, like benefits whilst you’re having treatment. They’ll outline their plan to you. It may or may not involve treatment. If it does involve treatment, you’ll be in touch with your consultants regularly from then onwards.
There are so many different types of blood disorder. It’s a spectrum - some are relatively benign, whereas others are immediately life-threatening. Even the cancers are on a bit of a spectrum in terms of seriousness. I had an acute one unfortunately (Acute Myeloid Leukaemia) - but I am treated, and still here! It IS possible to get through a serious diagnosis, and thrive afterwards. But a diagnosis of any type of blood problem is going to be a shock. Be prepared to feel numb, and for it not to sink in for a while.
Once you have a diagnosis, that may trigger lots of calls from other hospital depts, and paperwork being sent to you. Being ill can be a very busy thing at first.
I’m really hoping that you get good news. Everything crossed for you. Please let us know how you get on.
Very best wishes and a virtual hug,
Thankyou so much!!
Thanks Erica yes the waiting I just can’t deal with and usually I wouldn’t be so concerned but I think this is probably the most scared I’ve been before an appointment. But hopefully all goes well and it’s something and nothing
Wow thanks so much for replying! I am so grateful for you sharing your experience. I’m so happy for you that you got through it all and are here to help others going through similar things! It’s such a scary time and I can’t wait to call first thing in the morning and ask for an earlier time but I doubt they’ll have one but we will see just have to hope there’s a cancellation or something.
Hope you have a lovely rest of the day
Please let us know how you get on tomorrow @Mumlife, look after yourself.