Hi @SarahD1702, we are so very sorry for your loss. It’s so understandable to find this difficult, whilst you’re also coping with worries about your own health. I can see our forum members have mentioned some great suggestions, and all I wished to add is that our Support Team are here for you. If you ever wish to speak to someone, please don’t hesitate to call us (Blood cancer information and support by phone and email | Blood Cancer UK). If you need any further support we’d be happy to talk to you about options for that, too.
Hey folks
Thank you all for your condolences. They are very much appreciated! Thank you all for your warm, understanding yet straightforward attitude.
I scheduled an appointment with a new hematologist for september. Now I need the document for my GP to refer me. Should’ve been the other way round, but this was a bit of actionism on my part. When I feel anxious, I sometimes have random bouts of activity in my otherwise passive state. Sometimes that’s useful, often not!
I am a bit nervous about approaching my GP since he probably thinks I am a hypochondriac. He knows about my mental health issues and when I come to him with a concern, he asks me if I am currently working/in therapy to make sure it’s not boredom. Otherwise I really respect him and he’s not bad by any means, but sometimes I am scared that leads to dismissal!
And this time, I will come prepared. I received a checklist/keypoints of questions to ask via mail by the lovely support service here.
Hi @SarahD1702 you have got a lot going on at the moment.
At least you have scheduled your appointment with your new haematologist for September.
Perhaps you will be approaching your GP in a completely different way this time because you have your checklist/key points of questions to cover in a ‘pleasantly assertive’ way and you are prepared and perhaps even imagine that your forum friends and the Blood Cancer UK support services with you.
Look after yourself, be kind to yourself and please do let us know how you get on.
Hey guys,
since I still have to wait for 2 month (September 13) until I have my new hematologist appointment, I will try ask a few questions.
1.) What is the cause of my low white blood cell?
2.) What measures can we take to check whether it’s a malignant cause?
3.) Are Myelodysplastic Syndrome and / or Hairy Cell Leukemia options? Why / why not?
4.) I have noticed that over the past four years my MCV has increased a lot ( from ~86 to 95.8). What is your opinion on that?
5.) What is the next step in treatment?
Maybe this hematologist will be instantly worried and refer me to a BMB. Maybe he will answer a questions straightaway whithout my interference.
And for my doctors appointment in early August which is just me asking for a referrance / referral (?) to the hematologist, I am just going to say that I need it because I want clarity about my blood counts.
Hey guys,
quick update: got the referral today.
My doctor said the following :" Are you worried about Myelodysplastic syndrome (MDS) again? But there’s only one line affected and usually you don’t really act until the bloodwork is really off. Before there isn’t really something to do. I give you the referral, but most likely nothing will happen."
And he asked me whether Myelodysplastic syndrome (MDS)/blood cancer run in my family.
I do not know whether this perspective is calming or unsettling and whether his reaction is bagatellizing or appropriate.
Someone here - or do I confuse it with Reddit - told me that if I had Myelodysplastic syndrome (MDS), it’s most likely be in the watch and wait stage.
However, I am looking forward to seeing the new hematologist.
I mean, of course low risk is better than high risk, not to sound ungrateful, and I’m not diagnosed (yet), but Myelodysplastic syndrome (MDS) is still a serious malignant blood disorder.
I hope you guys are having a good time and I thank you all so so much for your support. This is truly one of the most welcoming communities on the Internet and I am stunned how you manage to spread hope without sugarcoating things.
I really consider talking to my sister about my concern that I might have Myelodysplastic syndrome (MDS) but I am hesitant. She helps me a lot, but I don’t want to burden her too mich, she has her own life to lead and a little daughter, and she has health anxiety plus we recently lost our father so I do Not want her to worry about losing the next close relative.
But maintaining my day-to-day life gets increasingly harder and I crave relief.
What do you guys think?
Hi @SarahD1702 you raise a really difficult question and I think that only you can really answer it as you know your dynamics with your sister.
However you have both lost your father recently, how are you coping?
The loss of my father really made me think about my own mortality, becoming more responsible etc. and I found it really hard.
What did you mean by ‘maintaining my day-to-day life gets increasingly harder and I crave relief’ ?
Have you had your early August doctors appointment yet, perhaps see if they can help you with your anxiety, it’s not for everyone but counselling helped me?
It might be worth writing out clear questions that you would like answers too and that would put your mind to rest.
Be kind to yourself and do something that you enjoy to divert your mind
Hey Erica, I am sorry that my post lacks a bit of clarity.
I think I am coping okay but while I was pretty stoic for the first month, I am now hit by low bouts every now and then.
With that my day-to-day life becomes harder, I mean that I lack energy and focus to maintain my tasks and to focus in class because I always think “it doesn’t matter anyway and the more I am attached to my daily life the harder facing the diagnosis will be for me”. WIth “I crave relief”, I mean, that I want to get my worries off my chest. Because a BMB will mean waiting a lot, I know that my appointment will not bring instant clarity!
My early august appointment already took place and I’ve touched upon it briefly in recent appointments.
My doctor said the following :" Are you worried about Myelodysplastic syndrome (Myelodysplastic syndrome (MDS)) again? But there’s only one line affected and usually you don’t really act until the bloodwork is really off. Before there isn’t really something to do. I give you the referral, but most likely nothing will happen."
And he asked me whether Myelodysplastic syndrome (Myelodysplastic syndrome (MDS))/blood cancer run in my family.
That was from early August/late June (the appt. was a bit earlier than originally scheduled luckily due to cancellations).
So he didn’t take my concerns seriously. He only said that if I had Myelodysplastic syndrome (MDS), it would be likely in an early stage so watch and wait would be the measure of choice. - not so different from the current stage.
But I got the referral to the hematologist I asked for. The appointment is scheduled for the 12th of September.
4 years, no diagnosis, no BMB. My MCV has changed the most, other counts are stable. It really scares me that it seems to be quite common for Myelodysplastic syndrome (MDS) to go undiagnosed for so long.
I am sorry if my statements are contradictory. Feel free to ask questions if anything doesn’t make sense.
I know that self-pity doesn’t help. I am just so afraid. So very much afraid. And I know that clarity is not yet to be expected. I wish I had been more persistant earlier.
Thanks so much @SarahD1702 for your brilliant clarification, it makes perfect sense.
Yes, 4 yrs without a diagnosis is a very long time.
You say about self pity, in my book you are naturally just feeling very afraid.
I think not knowing does make most of us feel afraid.
Perhaps write all your questions down and be pleasantly assertive till you get your clarity and answers.
Be very kind to yourself and please keep posting how you are and how the 12 September appointment goes.
We are here to support you and the Blood Cancer UK support line is also there for you on 0808 2080 888
Erica has given some brilliant advice in her post particularly about writing any questions down before seeing your medical team. Also bring a notebook with you to write down any answers you get to these questions. I often found appointments were a blur in the early days of my diagnosis and writing everything down really helped.
Also four years is a long time for a diagnosis and I certainly believe I was living with Myelodysplastic syndrome (MDS) for many years before being diagnosed. It’s great that you have an appointment to see a haematologist and hopefully you can get more answers following this appointment.
It is totally understandable that you feel scared while you are going through this, particularly as there are still a lot of unanswered questions. I would say everone on this forum has also been scared at some stage of their journeys, I certainly have. This is not self pity but a perfectly understandable reaction to a challenging situation. Remember there is great support available from Blood Cancer U.K. including the helpline. Also remember we’re all here to help on the forum as well. I know I got brilliant advice and support over the years on this forum and know I can rely on my Forum Friends when I need to talk.
One last point raised by Erica, which I totally endorse, is it is important to be kind to yourself. Take time to do things you enjoy and don’t feel guilty about it. I have got much better about this since my diagnosis and found it really helps me to feel more positive at challenging times.
Hey guys, tomorrow is the appointment at the hematologist. I am glad that finally the waiting will be over but I am also very scared. Also most likely a diagnosis won’t happen tomorrow so I have to prepare myself for more waiting! I am very scared that my life will be cut short and I dread the BMB, but it’s the only thing that will give me clarity…
I will bring a notebook and ask questions.
I wish it was already behind me!
Also I feel weird for living a “normal” lofe, pursuing hobbies etc with this issue over my head like a dark cloud.
I will tell you how it went!
Kind regards, Sarah
Oh @SarahD1702 being scared is so natural and it is fine to tell the medical people you see.
Be pleasantly assertive with your questions and make sure you understand the answers.
Just picture yourself with us all around you supporting you.
Fingers and toes crossed for you and yes, please report back.
Be kind to yourself
Hey guys,
I am sorry for not giving any updates for such a long time. As a forum reader myself this might be worrisome for others who have similar symptoms.
My hematologist calmed me down and said that Myelodysplastic syndrome (MDS) was unlikely because a) my leukopenia is mild and b) it’s my only “off” count - he told me that Myelodysplastic syndrome (MDS) without anemia was rare. Of course, my age played a role here as well.
I remember that I kept insisting that there must be something. Unfortunately I noticed that he seemed to feel pity for me because I was so anxious - I hope that wasn’t the reason he calmed me down.
Trust issues aside, of course I was relieved.
He drew another blood sample and I am going to see him on November 6th and we talk about the results.
I really pray for good health and that it’s nothing serious!
Of course my new education helps keeping my mind off of health worries as well. The time before I started it was very confusing, especially with my father’s passing and it definitely increased my health anxiety, because death was on my mind a lot.
However, until I have the final result I won’t get too carried away. I never want to take health for granted.
If you have any questions considering the medical examination or anything seemed suspicious to you, let me know.
And thank you for being there for me during the past few months. You really were a glimmer of hope and I can imagine that a lot of forum users feel the same.
Hey guys,
Follow up was today… Bad news is that I have anemia now (11.3 hgb), the worst count for me until now and my doctor still insists on a ‘reactive - toxicologic/immune’ reason for my Off bloodwork although he is unable to find anything. If my bloodwork worsens, I have to undergo a BMB. This is the first time a doctor suggests that, which is scary.
I am convinced that the problem is my bone marrow.
They suspect a B12 deficiency for the first time, which might explain the macrocytic anemia. But if not, things aren’t looking to rosy.
I am very afraid and scared and hopeless and falling back into a rut. Next appointment is in February, shortly before my birthday. Not sure what I dread more, the possible diagnosis or the uncertainty.
I also feel guilty because I neglected my prayer in the meantime.
This was a messy post, so if you have any questions, feel free to ask.
Here’s my diagnosis so far:
Most likely reactive/immunologic leukopenia
Vitamin B-12 deficiency
No signs of dysplasia but anisozytosis. How does this match?
I just hope and pray that a harmless explanation can be found. But if not, I have to deal with it anyways. I just finally want closure.
Best wishes,
Sarah
Oh @SarahD1702 it must be horrible living with the uncertainty.
Perhaps this time will give you the opportunity to get back to your faith and prayer.
I can understand what you say about not sure what you dread more the possible diagnosis or the uncertainty.
Don’t worry about you thinking yours was a messy post, I think my thoughts and emotions go round my head like a washing machine whirring round.
That is why I need to post on here to try and make sense of it all.
Just be very kind to yourself and keep posting
Hey, it is me again.
I just feel like I have to get some thoughts off my chest.
I am still in denial about the possible seriousness of my condition. I am so used to doctors comforting me.
I feel like all normalcy I was able to build up in the last month is faulty now.
I regret how I approached the meeting again.
I do not want to celebrate Christmas with this dark cloud over my head.
I do not know what to tell loved ones.
I think it is best to mentally prepare myself for a serious diagnosis. But it scares the heck out of me. I am in a rut, as mentioned before.
I need help. I feel left alone. The doctors “merry christmas” sounds ironic in my ears.
I don’t want to watch and to notice how my counts worsen.
This may sound drastic, but I am very scared of not making it through my new job education.
Do I have to accept this uncertainty or should I try to get this BMB done earlier? A second opinion? But I will most likely have to wait a few month anyway… Oh fck this is such a tough situation to be in. Although of course other people have it worse.
But I don’t want to die young. Because if I need a transplant, being mixed race, I don’t have such a good outlook…
Usually I have a journal for those thoughts. But since I am alone with my feelings, I post them because I need a reaction.
I have a flashback to times before and at the same time I feel like this time it’s even worse because my hgb and mcv have never been that off…
I cannot take the situation anymore. At least that what it feels like atm. Maybe I am going to feel better tomorrow. But the decision “waiting Vs trying to get further steps” is still on the table.
Deep down in my heart I already feel and know that it’s something serious. As much as this hurts to write down. I just want CLARITY. The symptoms all match to a T and all infections have been ruled out.
Turning to the forum because I feel very alone in this and I don’t want to scare my family or those dear to me.
Kind regards and good night,
Sarah
Hi @SarahD1702 I just wanted to say how honoured I felt to read your very honest thoughts last night.
How is today feeling for you?.
It is so natural that you want clarity and you want it now.
You are entitled to get an 2nd opinion or go shop around and go privately.
Please do ring the Blood Cancer UK support line on 0808 2080 888 I have found them lovely.
It is a balancing act to consider v your mental health.
Perhaps consider talking to your GP and really tell them how you are feeling, the severity and impact on your life, to see what they can suggest.
Your forum family is surrounding you and I am sending you loads of virtual hugs.
Please keep your journal and please do keep posting on our forum.
Be ever so kind to yourself the waiting and not knowing is so horrible
This is truly one of the most welcoming communities on the Internet and I am stunned how you manage to spread hope without sugarcoating things.