View Full Version : Please help - blood test result is bad
I took a call from my Dr after my blood test yesterday. My white cell count is apparently very low indeed, they didn't even ask me to go for a re test, they said I have to go for an urgent appointment this afternoon. I just know it is leukemia or lymphoma. I am a complete and utter mess. I am not even able to think straight. I had to leave work because I was in too much of a state to stay. I literally didn't know my anxiety could be this bad. I can't stop thinking about dying and how long I have left to live. I just can't actually do this.
I'm so sorry, Cattia. Remember the mantra, though - It's not cancer 'til it's cancer.
Thinking of you.
nomorepanic
06-11-19, 14:26
You don't know it is anything serious yet - good luck.
I don't think they would insist I came in the same day if it wasn't bad. To be honest I feel like anxiety is going to kill me right here and now. Didn't even know it could be this bad.
Cattia - it could be an infection, viral illness, an immune disorder or glandular fever or anything. I know this probably won't even help you right now, as I know your panic will be terrible, but please try and hold on to the fact that there are many many reasons for a low count like this. They will want to straight away start looking for reasons for it, hence the urgent appointment. Cattia I am really so sorry you are facing this fear this afternoon, I would be imagining things too, but hold on in there this is the first step to making yourself feel better too. I know you've been feeling quite rough recently, as we've talked on another thread, and I really hope today will be your chance to get to the bottom of it. What time is your appointment ?
nomorepanic
06-11-19, 14:40
They may just want to give you antibiotics or something if they think it is an infection - you don't know and stressing out over it won't be good for your health.
I just can't actually do this.
You can, and you will Cattia. Pull up your big girl pants, take a deep breath and get to the doctor. They want to make you well again, and get behind the cause, and whatever it is - your worst fear, or something that needs some other treatment, it needs to be done today. We will all be here thinking of you and wanting to know how you got on xxx
Shadowhawk
06-11-19, 15:29
I know how you feel Cattia - i am going to give blood today because i had low neutrophils on my last check up. For what its worth, the doctors suspect its because of the infection i had at the time when i went in (i felt absolutely miserable, my head was a mess, i was congested, etc); but even that hasn't helped the worry. Its hard not to fear the worst, especially after slipping up again an googling.. *sigh*.
Hang in there, and take it one day at a time.
ankietyjoe
06-11-19, 15:46
You've been in for a blood test because you had a fever recently, I assume?
So you have an infection, which is directly responsible for low white blood cell counts.
You need to look at the actual evidence, the reason why you had a blood test in the first place, not worst case scenarios.
They probably want you in to give you antibiotics.
Thank you all. My appointment is at 5. I'm thinking the fever was because of lymphoma. My mind is a mess. I will update. I really appreciate your support.
Not long now then...
A fever can be caused by all kinds of things, and lymphoma is the least likely.
I took a call from my Dr after my blood test yesterday. My white cell count is apparently very low indeed, they didn't even ask me to go for a re test, they said I have to go for an urgent appointment this afternoon. I just know it is leukemia or lymphoma. I am a complete and utter mess. I am not even able to think straight. I had to leave work because I was in too much of a state to stay. I literally didn't know my anxiety could be this bad. I can't stop thinking about dying and how long I have left to live. I just can't actually do this.
This happened to me previously and I was called back after 2 hours of giving blood. Turned out I had glandular fever.
I am very sorry to hear your having to go through this as I know its difficult even when one doesn't suffer from anxiety to be given abnormal test results but you have been feeling unwell lately and your previous post sounded like you may have some sort of virus or infection. This is maybe the cause of your abnormal white count so dont worry yourself sick just yet...
Please let us know how things go with your doctor appointment. Sending you (((hugs))) and postive vibes.
Yes, thinking of you CAttia
always scared
06-11-19, 19:17
Just checking in to see how you're doing . Have you seen the doctor yet?
Sorry to hear about such a stressful time. Any news?
Hi everyone, sorry to keep you waiting. The Dr was running really late and then I had to rush back and put the kids to bed.
So I was very lucky to see a Dr who knows me and knows Joe worried I would be about this so he had called the haemotology department in his lunch break and got them to do a full look at all my bloods. They said it is a viral picture and my body is fighting something off, he said it he is sure it's not cancer. They did suggest some other tests for stuff like hepatitis, glandular fever and various other things, he said he did not think these were really necessary but that he would run a few of them and will do the blood count again in two weeks as by that time the white cell count should have come down. He checked all my lymph nodes, liver, spleen and everything and he said he is sure it is not cancer.
Firstly I am so glad that I got this Dr who really made that extra effort for me. Secondly I am still kind of worried that I have to have more tests but all of these are viral ones and not for cancer. Thirdly I am really really grateful for all your support. I have not felt that bad in a long time or maybe ever. I am still having niggling doubts and worries about all this but I guess a haemotologist would recognise blood cancer even in the early stages? Thank you for talking me through this and checking up on me.
Oooo I love being right, love being right.....yaya yaya....viral illness mentioned in first post. (Ok, so others said it too! lol) That would totally go with the 'virus type' symptoms you have had these last few days. Right, see this - 'he checked everything and he is sure its not cancer', and the haemotology said 'its a viral picture'. Read it, and stop right there with your catastrophic thinking - so a few more bloods to checks on other VIRAL THINGS, no big deal. Great news ey - now breathe......
Thank you! You are right and I took my mum in with me because I knew I would doubt what he said (yeah I'm 42 with three kids of my own and I still take my mum to a medical appointment!) and she said 'if he said you were very healthy once he said it ten times,' so now I will try to rest and recover mentally and physically.
So glad to hear your appointment went well. Your previous post did match up perfectly with some sort of virus and seeing how you were running a fever off and on an abnormal white count really wasn't suprising butttt I can certainly sympathize and relate to your worry over your results.
Try not to overly stress yourself. Stress and worry deff takes a toll on the body. Try to eat well and get rest in when you can to help your body fight off whatever virus is plaguing you. This to shall pass, just takes a little time ♡
Im glad the appointment went well. To be fair you appear to have handled it much better than i would have done.
MyNameIsTerry
07-11-19, 02:35
Thank you! You are right and I took my mum in with me because I knew I would doubt what he said (yeah I'm 42 with three kids of my own and I still take my mum to a medical appointment!) and she said 'if he said you were very healthy once he said it ten times,' so now I will try to rest and recover mentally and physically.
And I bet you face all the trials life brings bringing up kids so don't be so hard on yourself when you need a bit of support. I was in my late thirties in my relapse and my dad went with me to seek help. Is it so different than taking someone for support for a physical issue?
As for the illness side, and I noticed Carys mentioned you feeling rough and there is talk about checks for glandular fever, I once had a low count of platelets after something and when it hit me I was off college for weeks. I had to drag myself back to bed on my backside up the stairs as I was so fatigued. They just monitored it for weeks and the body did the rest. This sounds like what is needed here.
It's something to remember for the future if you ever get referred for something urgently. There are so many reasons why they do this. Last year I went in for an over 40's NHS free health check they offered (and to be honest I wasn't bothered anyway but thought what the hell) where they found my BP too high and I likely had Hypertension. They sent me straight down to the surgery (the nurses had an overspill room at a local cottage hospital) calling ahead. What happened? It just needed a more senior nurse to make the tests and a GP had to pop in to check my heart/lungs and confirm the diagnosis and provide the prescription. All it literally meant according to them was that in such cases they prefer to kickstart treatment quicker even though risks can be very low. As others were saying that might have been the case for you, that they just didn't want you waiting weeks for an appointment feeling awful just for some pills. I guess they also want to catch us now because some people may not come back if they are the type who avoids doctors.
Thanks. I thought I would be doing better after the appointment but I still feel bad, I keep going over and over the fact that they called me in that same day so it must have been a really bad result and they would not just have done that if it was a normal virus. I keep trying to cling on to what the Dr said that it's a viral picture but I can't get all these thoughts out of my head. I woke up in the night covered in sweat again which has been happening quite a bit and was one of the things that made me think I had leukemia or lymphoma in the first place and then I was awake worrying again for well over an hour. I just want to know that my results are back to normal and I am worrying about what will happen in two weeks time if they don't go down. I still have no appetite at all which is really unusual for me, although I can eat fine when food is in front of me, I just don't feel hungry or fancy eating anything. If they had just said to repeat the tests in a couple of weeks I would be less worried but it's that urgent phone call that has still got me freaked out. Then I think what if the Dr didn't ring haemotology to reassure me, what if he called them because he was really worried?
I still can't calm down. I'm convinced that when I go back on two weeks my bloods will be even worse and then they will decide I do have leukemia or lymphoma after all. Or maybe it's in the early stage and will show up worse next time. I don't know how I will get through the next two weeks waiting. Also I can't get a Dr appointment for two weeks time so I will have to call in for the results and I'm worried about getting more bad news over the phone then having to wait for an appointment to find out how bad it is. I can't sort my head out at all.
Hi everyone, sorry to keep you waiting. The Dr was running really late and then I had to rush back and put the kids to bed.
So I was very lucky to see a Dr who knows me and knows Joe worried I would be about this so he had called the haemotology department in his lunch break and got them to do a full look at all my bloods. They said it is a viral picture and my body is fighting something off, he said it he is sure it's not cancer. They did suggest some other tests for stuff like hepatitis, glandular fever and various other things, he said he did not think these were really necessary but that he would run a few of them and will do the blood count again in two weeks as by that time the white cell count should have come down. He checked all my lymph nodes, liver, spleen and everything and he said he is sure it is not cancer.
Firstly I am so glad that I got this Dr who really made that extra effort for me. Secondly I am still kind of worried that I have to have more tests but all of these are viral ones and not for cancer. Thirdly I am really really grateful for all your support. I have not felt that bad in a long time or maybe ever. I am still having niggling doubts and worries about all this but I guess a haemotologist would recognise blood cancer even in the early stages? Thank you for talking me through this and checking up on me.
A haematologist would recognise blood cancers even in the early stages. FACT.
The haematology SPECIALIST opinion was "it is a viral picture". FACT.
You are having VIRAL follow up blood tests. FACT.
Thank you Pulisa, this is what I need to hear. I have to pull myself together. My mood has plummeted and having a migraine (and I guess the after effects of whatever virus this is) isn't helping. I've properly gone off the deep end and I know I need to pull it back. I really appreciate the fact check and will return to this and read it again.
can I add another fact -
You HAD A VIRUS and therefore the results match your experience. If you'd have gone in there and had that result and not been unwell, which you clearly said you were with a temp. and feeling really rough, then yeah I can see some doubt.
The trouble is I felt better by the time I had the test, I deliberately left it 24 hours so that I would be well. But now obviously I feel loads worse again and all I want to do is sleep. But I think that's partly the state I've got myself into.
Hi... I hope I can help here. I had a blood test earlier in the year as was feeling unwell. I got a call from the docs saying that I needed to get bloods done again as white cell count very low. This of course sent me into panic.
I had a repeat test and count was even lower. Doc did the same and called haematology,,, they said very likely to be viral. I had repeat blood tests fortnightly for 6 weeks and eventually back to normal.
All due to a virus. Please try not to worry. Hard I know. The doctor sounds very convinced all ok. Believe him.
X
Good thoughts Melon1 and spot on experience advice !!!
Cattia, 24 hours lol things take weeks to return to normal, its not like turning a tap on making new white blood cells. lol
Thanks so much for sharing your experience Melon1, I hope mine is the same. Carys, I guess patience is not my strong point! The virus wasn't even that bad, just a 24 hour fever and muscle aches. Plus my pulse was pretty high at 82. It's been back in the 60s for a few days now.
ETA also Melon1, how did you cope with the waiting and the anxiety? I feel like it's killing me.
Pamplemousse
09-11-19, 11:19
Cattia, as you're in the UK does your GP practice offer the online 'Patient Access' service?
The reason I ask is because yesterday I had a full blood workup (plus urine sample) for my diabetes review next week. I had the blood taken at 13:30 and this morning I had the results available online. The guideline figures for each test are given and the results classed as 'normal/abnormal' - the only one awry was my triglycerides which I expected, because I eat badly and am overweight.
And as for your pulse? I dream of a resting rate of 82... never mind 60!
Hi Pamplemousse, we do have Patient Access to book appointments but not to view results etc. Tbh probably just as well as I would spend hours googling every single result that was anything other than bang in the middle of average and freak myself out! I'm on a knife edge waiting two weeks for the next set of results, it's horrible. Still over a week to go and if those are bad too I honestly think I will lose my mind.
Really Cattia, this isn't 'knife edge' stuff. I'm not trying to make light of how you are feeling, but you've had medical specialists view your bloods (who do this day in and day out) and your GP thoroughly check you over. There is nothing about this that doesn't spell VIRUS. So, they might not be back to normal - still doesn't mean blood cancer !!
I am sorry to hear you are not dealing well with with the wait... The good news is your Dr consulted a specialist and they saw no concern with your blood work, they know what they are looking for. Your symptoms also perfectly lined up with a virus. You really don't need to be worrying about cancer.
Normal heart rate is 60-100 so yours wasn't high at all.
I feel like I've sunk into a massive depression over this. It's pathetic tbh I don't know why I can't get a handle of myself. I just want to cry all the time. Convinced that this will be my last Christmas, won't get to see my kids grow up, I don't want to get out of bed or do anything, just hide away. What the hell is wrong with me? Most people probably wouldn't be giving all this a second thought. I have to go back to work tomorrow as I have been off a whole week which is the first time in over 20 years I've taken any amount of time off sick. I think this is the first time I've had any solid evidence of something being actually wrong with me and its sent me crazy.
Cattia, physically, how do you actually FEEL today ? (Apart from spiralling with the HA)
I will admit I find it hard to understand the lack of trust in doctors, personally I am totally delighted when people do an assessement and it turns out its something minor, and just accept it. Myself and many others on here who have had some serious conditions need to trust the doctors, and have no other choice but to do so, doubting them means you stop living and start existing. I know that doesn't help much to hear that lol but just said it anyway.
Cattia - the solid evidence you have is that you had a virus and your body did what it was meant to do, exactly what it was meant to do!
I don't know Carys because my anxiety is so bad that I feel horrible anyway, tired, got random shooting pains which I had last week when my temperature was high (it's normal now). I feel like I have no energy but I also know this is how I get with anxiety so I don't know what is physical and what's mental. I don't know how I'm going to face work tomorrow but I can't stay off any longer. All I can think about is that urgent call from the Dr and what happens if my blood is the same or worse next time. I honestly can't get my head straight.
Cattia - the solid evidence you have is that you had a virus and your body did what it was meant to do, fought off something, exactly what it was meant to do!
It wasn't an 'urgent call' it was your doctor knowing you were anxious and trying to make things easier for you, knowing you'd worry if things were left longer. An urgent call is when someone rings and calls you in and says - your bloods show signs of lymphoma! They didn't, they know what it showed.
I don't know what your position is regarding counselling/cbt/talking therapies etc. I don't know if you've had them, or are waiting for them or what - you've been on here since 2010 with pages and pages of threads about serious illnesses. Thats 9 whole years of being in the grips of anxiety. Isn't it time to deal with it ?
I also took my pulse again today because I'm an idiot and it was over 80 so now I'm thinking the high pulse rate wasn't due to a virus at all and in fact I never had one, the symptoms I had were because of something worse.
Carys I know this sounds defeatist but I feel I've given up trying to manage my anxiety. I've been in counselling over two years. I have worked hard to better understand myself and I have made progress in some areas of my life but my health anxiety remains untouched. I have tried medication. Prozac helped me in the past but last year I tried twice to get back on meds. The first time I quit after a few days because the side effects were so bad. The second time I decided to stick it out wherever happened. I went through five weeks of hell on sertraline, it made my anxiety so bad that I couldn't function and after all that I didn't feel any relief so I quit and at least when back to normal! I always address my anxiety with my Dr. I do meditation every day. I write my thoughts in a journal. I exercise, eat healthily but nothing takes the edge off my anxiety. I am at a loss what to do after all these years of dealing with this. I admit that this is a worse flare than I've had in years but I basically can't really function when I am so afraid. I know I am wasting my life with these thoughts but I am truly out of ideas, I think even my therapist has no clue what to try next.
I'm sorry Cattia, you clearly haven't found the key yet, despite trying so many routes.
I don't know, honestly what your issue is with this 'high pulse' rate. This really isn't high and for many people is their standard resting heart rate, and if you are as anxious as you indicate I'm surprised its not much higher.
Dying_Swan
10-11-19, 15:38
Do you think your therapist is helping? I've just recently quit my therapy because after a long time, I had to admit to myself that it isn't helping me. I don't blame the therapist, who has helped me greatly in the past, it's just that I'm in a different place now, so I'm going to try a different type of therapy. I'm not saying you should or shouldn't quit, but it might be worth having a review of where you're at with your therapist.
Please don't panic about a pulse rate within the normal range. Heart rates go up and down according to all sorts of things, anxiety being one of them. Do stop checking it though, as it won't help you. I really don't think a GP and a haematologist would have said it was viral if they weren't very confident that's what it is. Have you tried the free CBT modules on here? They might help you to distract yourself when you're spiralling.
Midnight-mouse
10-11-19, 15:41
My heart rate is above 80 at rest and I’m on beta blockers! I was in the hospital the other day and definitely had my blood pressure and pulse taken more than enough for someone to say if it wasn’t normal, the ambulance crew were just happy to see it under the 130 it was when they arrived. I wasn’t ill (the issue was pain), but I was in a right old state!
I believe a normal resting heart rate is from 60-100, I’m over 100 consistently without beta blockers just due to the anxiety even if I don’t feel overly anxious at the time.
Positive vibes.
Sent from my iPhone using Tapatalk
Good advice Swan. I do think also that it would do you some real good to employ self-reassurance strategies - you are repeating over and over negative phrases like 'its was an urgent appointment', 'what if the results are bad next time, I will lose it', 'I don't think it can be from a virus' - and I would highlight many many more. If your therapist is all about cbt then they will want you to retrain your responses to situations - and part of that requires serious amounts of repetition of the correct response. If you read back through this thread you will see that we have all provided the types of responses you should be retraining yourself with. You have spent years thinking in a particular negative way and you can undo that with lots of 'homework' and at the moment you are still giving a lot of credence to your belief that you have something sinister wrong. (Even by taking your pulse)
You should have come out of that 'urgent' appointment and said 'phew, I thought I had lymphoma, I believed it, I was totally wrong though'. That relief should have continued - I know you naturally don't do it, as you have 9 years behind you of repeating that there is something to fear and doctors must be wrong. However, as it doesn't come naturally you you have to force it, with extra repetition and a choice to not reinforce the irrational fear side. I tell you who is doing a great job at the moment of employing these 'I'm going to force myself to be rational despite the underlying fear and faulty thought processes' and that is LouiseAndy. Look up her recent thread.
Thank you all for taking the time to reply. You are all right. Swan, I have been wondering for a little while about finding a new therapist. My therapist does do CBT but I found it didn't help me that much as ultimately I believe my problems are rooted in a fear of loss and death and no amount of reframing my thoughts really seemed to take this away. When I look at how likely it is that I have whatever illness I am stressing about I can see logically that it is usually unlikely, but the fact remains that one of these days my fears will come true and I will get sick and die as we all will. Whether I'll feel any more ready to face that at 95 than I do now I don't know. Many of my anxieties around death now are to do with leaving my young children and if I live to an older age then at least I don't have that worry, but I was like this before I had kids so I know it's not that. I've explored in therapy whether I would be less afriad of death if I felt more fulfilled in my life, but I don't know. There are changes I'd like to make but many of them I don't because I fear change and I fear illness. As for repeating the same negative messages to myself, I completely can see that I do that. I feel it's a safety behaviour for me. I can't allow myself to believe that I will be OK because it would mean letting my guard down and not being ready for the worst. If I am not on high alert with my health then I fear somehow I will miss something or that I will give myself false hope that I don't deserve. I have spent my whole life thinking this way
I have failed to shift gear although I truly want to. Now I think if only I can be told I don't have cancer I will be happy. My anxiety will stop. But I know that's a lie. It will shift to something else. I'm already thinking if this isn't cancer then it might be post viral fatigue that could go on for years. Honestly, I see people on this forum all the time posting the same old nonsense that I post too. But I know for every one of them it's so real to them as it is to me. And I see other posters here challenging them to deal owgj their anxiety and I truly want to but I don't know how.
Bless your heart Cattia, you really GET this don't you - and have explored and thought in detail about all aspects of this awful state you get yourself in and are so logical in so many ways. You feel so close to breaking through on this, I can just feel it and yet it seems so far for you.
**WARNING FOR THOSE WHO DON'T WANT TO BE TRIGGERED BY DISCUSSIONS OF DYING, THOUGHTS FOLLOW .....**
As for 'being founded in a fear of dying', this was actually discussed on another part of the forum recently - various doctors (my own included some 40 years ago) have said that HA was just a by-product of a fear of dying, I expect for most people that is the basis for the HA fears. I found, personally, that acceptance that one day - yes - we will all get sick and die was a way forward. No amount of worrying, obsessing, fearing and fighting is going to stop it eventually. Dealing with the fear and pain that this knowledgeand acceptance brings and then moving on, saying 'but thats not now, its not today and the chances are in my favour that it won't be for years - so why worry about it and spoil life today and now?' helped. Dying is going to happen, its outside our control, but how we live today and how much we enjoy our life is totally in our control - why not put effort into something that you can make a difference to. Lying on your death bed (in old age !) what will you think of ? The years you wasted in fearing something orrrrrr what you achieved, the time with your family, the way you lived life to the full, the experiences you had. Ok, I've paraphrased years of my thinking and struggling into a few sentences lol ...and its not clearly that simple.....there was also for me the aspect that I had no religious faith, and still don't, and I think that makes it much harder. You know with panic attacks you are taught that acceptance and floating through it makes the fear less, you can do the same with other thoughts too. I'm not sure I'm making sense now....so will stop...but just wanted to add one more thing; many of those unfortunate and courageous souls who are diagnosed with something awful and terminal, they carry on living, they make the most of everyday and try not to concern themselves about the future as its outside their control. Of course, the fear must be there at the start, but acceptance and peace with it usually ensues for most.
Dying_Swan
10-11-19, 18:03
Great post Carys. In my life I have often been astounded and inspired by the strength and positive outlook of people suffering serious diseases. I also totally agree that of course, one day we will all die, and what a shame it would be to waste good health worrying about the what ifs.
Cattia, you have really good insight into what's going on and I believe you can and will come out the other side of this. None of us with anxiety like uncertainty, even a tiny hint of it, but we have no choice but to plod on with it because it's part of life. See if you can find something to distract you, even for a short while, and give your mind a bit of a break.
Thank you both. I so appreciate your thoughts on this and can see the wisdom in them even though I can't yet accept this for myself. I don't think I could be one of those brave people. All I do is live in fear of everything. The desire for certainty and reassurance is so overwhelming to me but at least I can see that some people have progressed through this even if I can't at the moment. Sometimes I feel like I am trying to change a gigantic set of points on a railway track that has been rusted in place for my entire life. I can see that there is another direction the train could travel but shifting the rusty points is too big a job for me! I don't know how I will get through this scare and I still feel full of despair about it all but it does give me solace to read your words and know that other people understand what I mean and what I am thinking.
I can't allow myself to believe that I will be OK because it would mean letting my guard down and not being ready for the worst. If I am not on high alert with my health then I fear somehow I will miss something or that I will give myself false hope that I don't deserve. I have spent my whole life thinking this way
I have failed to shift gear although I truly want to. Now I think if only I can be told I don't have cancer I will be happy. My anxiety will stop. But I know that's a lie. It will shift to something else. I'm already thinking if this isn't cancer then it might be post viral fatigue that could go on for years. Honestly, I see people on this forum all the time posting the same old nonsense that I post too. But I know for every one of them it's so real to them as it is to me. And I see other posters here challenging them to deal owgj their anxiety and I truly want to but I don't know how.
I had to quote this because I think it sums up the overall cause of HA so well. Finding a balance between taking care of yourself and not being overly anxious about your health seems to be extraordinarily difficult for some of us.
what a shame it would be to waste good health worrying about the what ifs.
And this is the other side of it. I wish I had answers. I think CBT does have its limitations. For me personally, I can give you all the logical reasons I shouldn't be too concerned about something, but I can't really take it onboard. It doesn't give me any confidence, or the ability to move forward. I've actually gotten interested in the "distress tolerance" aspect of DBT, which at least gives you some tools to get through those difficult times when you are worrying. What would be better would be some way to break out of the endless loop of finding new things to worry about.
I dragged myself back in to work today. It was hard but it kept me distracted most of the day. Now I'm home my mood has crashed again and I'm now obsessing over how much weight I've lost. I was trying to lose weight and I've been exercising every day for four months but these past few weeks I seem to have lost loads. I have been really trying hard to sit with the uncertainty and reassure myself m sometimes it helps a bit for a while and I feel a little better then I lose it again and all the really bad thoughts come cashing in. I'm thinking of going back on meds once I get through this but I need to know if I've got cancer or not before I do anything else. I've also been focusing a lot on my night sweats even though I have had them for years and they are not drenching. I'm trying to be strong but when I look at my kids I want to cry at the thought of leaving them. I hate hate hate being this way. At work today I printed off all the threads I have ever started on here. It comes to 13 pages of A4. This is what I've done to myself over the years, and that's just since joining this forum. Before this forum existed I was on a different one and before the Internet existed I would spend hours in the medical sections of bookshops looking up symptoms. I'm so over this. But as usual I feel like there is no point in dealing with my anxiety because I will be dealing with cancer in a couple of weeks time.
But as usual I feel like there is no point in dealing with my anxiety because I will be dealing with cancer in a couple of weeks time.
Cattia, you are still doing it.....this sort of statement. I know you say you've tried the reassurance route, but we don't see much evidence of it on this thread (sorry, I'm not trying to be harsh but realistic). I think you are half-heartedly fighting through and never truly believing the positive side of things - because you have spent so long, so many years doing the opposite. Your doctor told you you don't have cancer, the person viewing the bloods said not cancer, none of your symptoms say cancer.
You should to go through this particular thread, now that you've printed it off, and highlight the positive statements that people have made and reasons which this is typical of a virus. Printing everything off is certainly an awareness raising exercise and I can tell how fed up you are of the situation and the way your mind is working and are all too aware of your mind-set - but unless something positive comes out of having those threads in your hands then there is no point having them.
But as usual I feel like there is no point in dealing with my anxiety because I will be dealing with cancer in a couple of weeks time.
I'm now obsessing over how much weight I've lost.
but I need to know if I've got cancer or not before I do anything else.
I'm trying to be strong but when I look at my kids I want to cry at the thought of leaving them.
Cattia, you are still doing it.....these sorts of statemenst. I know you say you've tried the reassurance route, but we don't see much evidence of it on this thread (sorry, I'm not trying to be harsh but realistic and show you exactly what you are doing that is the wrong thing to do). I think you are half-heartedly fighting through and in your own words 'trying to be strong' and never truly believing the positive side of things - because you have spent so long, so many years doing the opposite.Everything you write here reenforces your faulty belief. Your doctor told you you don't have cancer, the person viewing the bloods said not cancer, none of your symptoms say cancer.
You should to go through this particular thread, now that you've printed it off, and highlight the positive statements that people have made and reasons why this is typical of a virus. It will be a good exercise for you - everything, every single thing that could be seen as the opposite of the dreadful situation you are fearing. Printing everything off is certainly an awareness raising exercise and I can tell how fed up you are of the situation and the way your mind is working and are all too aware of your mind-set - but unless something positive comes out of having those threads in your hands then there is no point having them. YOu recognise all the years that you thought you were seriously or terminally ill, this time is no different, but your HA brain is saying 'but this time its different'..
I have been really trying hard to sit with the uncertainty
What uncertainty ? There is none for the medics. There shouldn't be any for you either, you should have come out of that appointment after all the reassurance and said 'Phew'.
Thanks Carys. I've even been googling again. Of course I know better. I feel like I'm being tugged in two different directions. It's so hard to shift my thinking, I'm not sure if I can do it. Every time I go through this I think 'what's the point when I probably actually have xyz thing this time' an I also think 'all the times before have never been as bad because I've never had xyz evidence of actual illness before. My friend at work who also has HA reminded me today of the time I was convinced I had bladder cancer amd I had blood in my urine so as far as I was concerned that was actual proof. Then there was the time I noticed I had a lopsided face. Even the Dr could see it so every time I feel I have actual proof, this time it's my bloods. It's always going to be something. I do recognise that now more than ever but the intrusive thoughts about my kids celebrating next Christmas without me and all that sort of thing are so strong and so distressing that I don't know how to deal with them.
Deal with them as I've suggested, make a start on highlighting everything in this thread that tells you that you don't have anything really wrong. Rather than the really silly idead of googling, which has become your habit for far too long. You have the usual physical response to a virus, the expected response.
You've spent years and years ina constant state of belief that every single sniff, tingle or pain is life-threatening, now its going to take huge amounts of time and effort to reverse it. You aren't making any progress as you are still constantly reenforcing that something is wrong, just as you have done for 9 years here and years before that. You have the key to this, nobody else, but you have to start doing the right things.......
Your GP should have this on the table the next time you go in :winks: ....and we could add wording to it too about their years of experience as practicing medics, let alone their initial degree !
https://i1.wp.com/participatorymedicine.org/epatients/wp-content/uploads/sites/3/2015/11/Google-doctor-mug.jpg?resize=300%2C300&ssl=1
You know that haematologists are incredibly highly trained - they have to become doctors first (4 years), then there are 3-4 years of additional training, exams and professional qualifications to take.....then there are the years of experience in the field....so you still think you know better ? Well, you know what Cattia, if I need bloods testing I think I'll go with a haemotologist rather than you https://www.nomorepanic.co.uk/images/smilies/roflmao.gif
That is so apt Carys! It does reassure me to know how much training a haemotologist has to go through. And I guess they would have done other tests apart from viral ones if they thought it was cancer. The Dr I saw who is a locum but one I have seen many times has told me before that he had had health anxiety himself so he really gets it which helps because I feel like less of a freak talking to him about my fears.
Dying_Swan
11-11-19, 17:59
My GP has that very mug in his office :D
Cattia, I totally understand the mindset of "there's no point dealing with the anxiety because I'm going to be dealing with [insert terrible situation] soon", but I disagree. From what your doctor has said, you aren't likely to be dealing with anything other than a repeat blood test. What's the betting you'll come out of your GP surgery with instantaneous relief, and then immediately start panicking about the next thing? You've already done that in this thread, and you've said so yourself. Wouldn't it be more constructive to at least put in some plans for dealing with your anxiety, so that when you get that relief, you don't go backwards again?
I'm thinking about starting meds Swan. I know they are not a cure all but I have always been half hearted about taking them before because of the side effects. I wonder if they would help? I also need to think about how to move forward with therapy as I feel in a rut with my current counselling at the moment.
Start with my suggestion Cattia, highlighting the reasons many others have given in this thread - you have it on paper, now use it positively. That is a very basic step in CBT, and it is something you can achieve and it is exactly what you should be doing retraining and counteracting your faulty thinking. There is no magic therapist or medication that can do the work you need to do yourself ;o)
I also just found out that my kids had the nasal flu spray at school today and it is a live vaccine that sheds for two weeks so I am now worried that as I have no immune system I am going to catch flu from it and my white cells will go even lower, if I had realised it was this week I would not have let them have it.
From public health England....
http://www.oxfordahsn.org/wp-content/uploads/2015/07/PHE-factsheet-for-HCW-andheadteachers-on-LAIV-concerns-about-viral-shedding.pdf
Read it in full, but notably these parts...
Healthcare workers administering LAIV may,theoretically,be exposed to the vaccine virus if it is accidentally released outside of the child’s nose. In the US,where there has been extensive use of the vaccine over many years, no transmission of the vaccine virus to healthcare workers has been reported to date.Health care workers who are immunocompromised and those who are pregnant can safely administer the vaccine. As a precautionary measure, however, very severely immunocompromised healthcare workers should not administer LAIV.
Shedding of vaccine virusAlthough vaccinated children are known to shed virus a few days after vaccination, the vaccine virus that is shed is less able to spread from person to person than the natural infection. The amount of virus shed is normally below the levels needed to pass on infection (transmit) to others and the virus does not survive for long outside of the body. This is in contrast to natural flu infection, which spreads easily during the flu season. In schools using vaccine, therefore, the overall risk of influenza transmission is massively reduced by having a large number of children vaccinated. Despite the overall low risk of transmission, some parents of children with immune problems have been concerned about their child being exposed to vaccinated children in the two weeks following vaccination. In the US, where there has been extensive use of LAIV for many years, serious illness amongst immunocompromised contacts who are inadvertently exposed to vaccine virus has never been observed. Expert doctors at Great OrmondStreet Hospital, who deal with many children with very serious immune problems, do not recommend keeping such children off school purely because of vaccination.
Thank you Carys. I don't know how you all put up with me. I truly hate feeling this way. I feel like I'm standing in traffic and being hit by one car after another with these thoughts.
Pay me back then, by doing the highlighting ! :winks:
(By the way severely immunocompromised won't be you lol)
Dying_Swan
11-11-19, 19:31
I think meds can help but I don't think they are a "cure" for long term anxiety, though that's just my opinion. That said, I do think they can help lower your anxiety to a point which makes it easier to deal with. I completely understand the therapy rut and it's difficult to get out of, especially when you know and feel comfortable with the therapist. There is absolutely nothing wrong with asking for a review session to see what you both think.
Do try what Carys has suggested. It might really help you to get through where you're at with this worry. As for the flu vaccine, I'd think it's highly unlikely you'll catch anything - I just had a read about it and apparently there is no evidence to suggest others can catch flu from it, though it suggests kids in a household with someone severely immunocompromised shouldn't have it. The example they give is bone marrow transplant patients, so...severe, not someone who's a bit run down after a viral infection. It's always wise to take sensible precautions like regular hand washing, but really don't worry about it.
Dying_Swan
11-11-19, 19:32
We've been reading the same document Carys, but you were quicker than me :D
See Cattia - This is how applying rational thought to it works :
You said at the top of this page that your children had the live nasal spray and it was shed for 2 weeks, therefore you were at risk. My first thought was - but hold on a minute, what about all those people they will come into contact with over 2 weeks ? Many won't be vaccinated, some could be elderly, young, pregnant or ill themselves etc. So, how would it be allowed/sensible to give a live vaccine that could infect other at-risk people, that would surely be dangerous ?
You have to stop - and think of the other side of this - imagine you are debating with yourself and give the alternative perspective. Think of any situation having two sides to the story. Your side is a biased side, an extreme that has been built for years and years based on fear and falsehoods. So, you have to try and learn to give yourself the information from the other side (which is what swan also did, following the same path as I did mentally). That is why I want you to darned highlight to give the other side to counteract your catastrophic side of the story ! LOL
We've been reading the same document Carys, but you were quicker than me :roflmao:
I just spoke to my Dr (my own Dr not the one I saw last week) because my anxiety is so so bad again today. He said he understood it would be an anxious wait which had just made me feel worse. He said it will probably be fine and he expects that my white cell count will have gone back up but he definitely didn't reassure me that I don't have lymphoma or leukaemia like the other Dr did. I feel even worse now if that's possible. He said I can go in on Monday afternoon and have the bloods done again and he will call me on Tuesday. I feel like I'm going to die from anxiety. I know you've all tried really hard to help me but right now I feel beyond help and so so horrible. I don't honestly know how to make it through next week or what I will do if the results don't change, plus I feel so exhausted and weak now because I am so stressed. I'm sorry to keep doing this I really am. He offered me diazapan or something like that but I don't think it will help as all I want is to know if I'm OK or not.
From what I've heard, diazepam is actually really good in these sorts of scenarios.
We all have times in life when face uncertainty of various types, and how we deal with it is the important part. Many on here who actually have diagnosed medical problems have scans and checks all the time, its stressful but the wait simply can't be avoided. Nobody can make the blood test come sooner I'm afraid and by the sound of it they are going to do a majorly quick turn-around on giving you your results. The doctor said he 'expects it to have come back up' but instead of that you are reading into it that because he didn't say you didn't have leukaemia, then he thinks you might have it.What else can he do but offer you diazepam ? Maybe your own doctor, and I don't mean this rudely, is just so used to your HA now that he knows the reassurance will make no difference to you.
I don't know what else to say Cattia to be honest.
Thanks, there is nothing anyone can say or do really. I can't see past this and I don't know how to feel better. I feel like every day is a million years long and yet I am too scared to face the results next week. I keep going over everything he said. I know this is my own fault for calling in the first place. I was better before I spoke to him. He said that white cells usually go up in infection but sometimes they can go down. He said that I should try not to worry yet! I am honestly at the end of my rope with all of this. I know my anxiety has led me here but I feel like this is my lowest point yet in all the years dealing with this.
Have you run this all past your Mum ? She was in the appointment with you the other day, but have you told her about your call today ?
Cattia, I know this is horrendous for you right now, but lets be realistic here - if there is something that is causing your white blood cells to be low (other than the virus the other doctor quoted) then surely you need to know and have that reason treated ? Lets not jump to blood cancers here right as there is a myriad of other more likely conditions that can also cause a low white blood count - I'm no doctor but I know they range from vitamin deficiencies to autoimmune conditions, long-term infections and glandular fever with loads of other things in between. I know we can't stop you from worrying and nothing we say will make you feel better at this point, but you really have got to accept that part of getting blood tests done (the deal you sign up for) is to diagnose and treat not just to give you the 'all clear reassurance' every single time. Its the same with any sort of test or scan they don't just exist to give people the stamp of approval that nothing is wrong and all is ok and the chances are at some point in your life that something will not be quite as it should be. You went to the doctor because you felt unwell, so now the process is that they discover and diagnose why you felt /feel unwell. It doesn't mean that you have the absolutely worse case imagined scenario - and your doctor expects it should rise - but you do need them to complete the diagnosis right ?
She's been away for a few days but I have just text her. I honestly wish I had not called the Dr back.
What's done is done. Unfortunately, anxiety can make us make really unwise choices.
I honestly wish I had not called the Dr back.
Yeah, I know you were coming from the perspective of needing and wanting more reassurance, but it wasn't of course a great idea - as there was nothing else you could be told right now anyway. The 'fix' you wanted won't exist from anybody at the moment, the miracle words to make you feel better, partly because you will read into the words and bring your own fears and doubts into them.
I'm also thinking should I be off work now as the risk of infection must be high, what if I catch something else?
Cattia, for heaven's sake, don't do anything that will leave you to spend more time alone with your thoughts. This would be a Very Bad Idea.
Did your doctor advise that ? Did he say 'you are so immunocompromised that you should not go to work/see other people/go anywhere or do anything'?
nomorepanic
12-11-19, 16:00
All of this stress is actually worse for you then anything else right now so you really do need to get control of that.
Think about what you are putting your body through by being so highly anxious 24x7
If nothing comes of this then you have put yourself through all of this for no reason.
Please start taking control of your thoughts and feelings right now and get on top of this.
LouiseAndy
12-11-19, 16:26
I know it's hard and I've had times myself where I've had to wait for tests/results but sometimes all you can do is wait and carry on the best you can until the day comes. Will be thinking of you x
When my daughter had severe neutropenia she had to go into immediate isolation and I was rung in the early hours of the morning by the lab.
You have got this situation completely out of proportion, Cattia. Why are you so intent on torturing yourself?
Dying_Swan
12-11-19, 18:10
Waiting is always hard, and I've done similar things to you (phoning up) to seek reassurance, and then felt worse. The thing is, your GP can't say categorically you do or don't have xyz. What they can and are doing is giving you their best very-educated guess, based on years and years of training and experience. Has your doctor has told you to stay off work?
Thanks, no my Dr didn't mention staying off work, he offered to sign me off because of my anxiety but I don't know that it will help. My dad has given me a firm talking to and told me I have to deal with the accumulated stress that has caused this situation. He's right but of course I can't think straight and am thinking I've left it all too late or given myself cancer through being so stressed my whole life. But yeah I have to try to get some perspective. I am going to juice some fruit and veg seeing as I am struggling to eat and losing more weight.
Thanks, no my Dr didn't mention staying off work
...and why do you think that is ? (could it be as Pulisa said above, you have this totally out of proportion)
Cattia, do you really think your Dad would have given you a "firm talking to" if he truly thought you were very ill with a blood cancer? He would be first in line to get you a second opinion and would be pushing for urgent medical attention but he knows you and how your HA presents and how you resist a logical explanation and go all out for the worst case scenario catastrophe.
You CAN think straight and have control over your HA if you put your mind to it and if you have a doctor who knows how to manage HA.
Thank you Pulisa. My dad doesn't believe I am ill, nobody does apart from me. I so want to believe them but the bottom line is I won't know until next week. I hope your daughter is OK.
Also I want to thank you all for your support. Looking back through this thread I can see how annoying I am and how it seems like there is no getting through to me. My husband is sick of me. I feel Iike I'm on my own apart from one friend who understands and my online friends. I feel very low and have even had thoughts about self harm (I won't act on these thoughts because I am aware that they are just thoughts and that won't help) but it's a long time since my mental health was that bad. I am just going to try now to make it through to next week and get the information then at least I will know where I stand.
If you are reassured by the blood tests results next week will you know where you stand? What would it take for you to be reassured? I think facts are all important but I understand that facts are never facts when in the grip of HA and you can always find an alternative to "evidence" if you allow/persuade yourself to.
Dying_Swan
13-11-19, 14:04
Well you're not annoying me Cattia. I know only too well how it feels to be caught up in a spiral of worry where however much people try to reassure you, you can't see the wood for the trees. I'm sure that goes for most of us on this site. You are not alone, however much you feel like that. If things feel really hard, don't forget the Samaritans 116 123.
Thanks for understanding. Now my youngest daughter has a cold so I don't know if I'll be able to get the bloods done if I catch it. Even more stressed now if that is possible. I don't want to call my Dr back and ask him after yesterday's call made me so much more anxious. I feel so wiped out that I don't even know any more of I'm sick or just stressed out of my mind ��
I've got to go back for my repeat bloods today and I am so scared of the result, I almost feel like not going but I guess I need to find out. I'm worried that it will either be worse or non conclusive which will cause more anxiety which I'm not sure I can take.
Postive thoughts (((hugs)))
Woken up with a small purple bruise on my armpit in a place I couldn't have banged or knocked, I know these are the exact bruises to look out for with leukaemia so now I am absolutely convinced that I have it and I feel so sick and don't know how to deal with it.
Cattia, a small purple bruise could be from pinching the skin or a tiny burst blood vessel from applying deodorant too hard or washing in the shower or scratching an itch too hard....come on....work on it. Don't you think if you were at the 'leukaemia' point with bruises appearing under your arms that you'd also already be covered with them over your whole body, possibly also a rash ? DOn't you think you'd have other of the leukaemia symptoms (of which there are many and obvious to a doctor) like bleeding gums ?
Bruising in leukaemia has anaemia as part of the issue (other cells push out red blood cells), did your last bloods show anaemia and your doctor mentioned that to you ????
You have to question why on earth one teeny weeny bruise would make you 'absolutely convinced' you have it.
Thanks Carys, the Dr said I don't have anemia. I have read so much over the years about leukemia so I feel that this is the type of bruise that is a red flag. I am still waiting for my results. Never been so anxious and that's saying something. I know I need to get a hold of myself, I just feel out of control right now. I really appreciate your comments. I can't see anything beyond my fear at the moment.
So here I am, back with my tail between my legs to say that you were all right and I was wrong. The bloods have all come back normal. They even did an additional test for lymphoma markers (glad I didn't know that at the time!) and that has come back clear as well.
I am relieved but also really embarrassed for getting in such a state. As a lifetime sufferer of HA this is one of my worst meltdowns, I think having actual evidence that something was not right was maybe what made it so bad. I am seeing my doctor next Friday to talk about my anxiety and hopefully come up with a better plan to manage it. Maybe think about going back on meds for a while, I've been off them for almost 20 years. Thank you for all your support and I am glad that you were all right!
WiseMonkey
19-11-19, 18:49
Glad your results were all normal, nothing you were describing sounded like leukemia. A friends daughter was diagnosed at 18 months and she had huge bruises on her back and very lethargic. She survived the treatment and is alive and well today (29) and has a child of her own :)
Very glad to hear it Cattia, but of course not surprised lol Keep this thread, read it back if you ever get in that type of state again. Also, very pleased to see that this time you are taking direct action to address your HA problems. You need to really change your thinking and responses to things, but then you know that, and you've had some perfect examples of how to do that on this 'ere thread. If you were to do as I said and HIGHLIGHT ;0) the reasons that we all gave all the way through this thread, it gives examples of how to give logical reasons for things rather than catastrophic reasons. Make this the last time, the culmination of years of being this way, then the embarrasment will have been worth it. lol
Thanks again Carys and thank you for all your patience. I have always felt like CBT would not work for me as I have been this way basically my whole life but over the past few days I have been reading more stuff about cognitive distortion with anxiety disorders and it starts to make more sense to me. One thing I want to do is set establish some clear expectations with my Dr about what tests it is reasonable for me to have and how often. I still think at the root of all this though is my underlying fear of death and my belief that I cannot deal with serious illness. There are people who have to face terminal illness and have to face my worst fears and I can't help thinking that one day I will be one of those people and I won't be able to cope. I guess the answer lies in accepting uncertainty but that is so, so hard to do. I am going to try to make a plan with my Dr, ,I will let you know how I get on next week.
I still think at the root of all this though is my underlying fear of death and my belief that I cannot deal with serious illness.
I don't think you are alone there Cattia, most HA comes from a 'fear of death and dying'. I think it was earlier in this thread that I said that I was certainly told that by my doctor 40 years ago, it could have been another thread though.
There are people who have to face terminal illness and have to face my worst fears and I can't help thinking that one day I will be one of those people and I won't be able to cope.
Well, sorry to say this in a way that might be triggering, or enlightening lol - but you are already facing it. We are all heading to the terminal conclusion, that is part of living. There is no getting away from it for any single one of us. So, some people are 'terminal' earlier than some others, but we are all 'terminal' if you know what I mean.
Dying_Swan
19-11-19, 20:53
Great news Cattia. Very pleased your results were fine, and thanks for letting us know. Don't be embarrassed, just be determined to beat your HA :) I think you are and I think you will. Good luck x
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