View Full Version : Deeply concerned about my mum
Hi everyone,
So my 54-year-old mum went to "eye casualty" yesterday because the vision in her right eye was flickering and fading.
They chalked it down to nerve damage; I was originally scared that it was a brain tumor causing it but they did blood tests and she's severely anemic.
Severe anemia can cause problems with eye sight - she went to hospital today for a blood transfusion.
As someone who was terrified that I, myself, had bowel cancer, I'm now concerned that my mum has it, as bleeding tumors in the bowel can cause anemia.
Obviously I'm not a doctor but what else could it be? I asked if she had a heavy period and she hasn't.
They also gave her a chest x-ray because she used to smoke and that was all clear.
So they're performing tests and getting to the bottom of it but obviously I'm fearing the worst.
Does anyone know any benign causes of severe anemia?
Thanks
Hello Toby,
Sorry to hear about your mum. Hope she gets better.
Usually anaemia can be caused by a malabsorption issue in the bowels (coeliac disease, ulcerative collitis), iron/B12 deficiency , bleeding from somewhere (could be a stomach ulcer) and viral infections that can dissolve red blood cells. So it is not always a malignant cause, but at least it is being dealt with promptly. Please keep us updated.
Hello Toby,
Sorry to hear about your mum. Hope she gets better.
Usually anaemia can be caused by a malabsorption issue in the bowels (coeliac disease, ulcerative collitis), iron/B12 deficiency , bleeding from somewhere (could be a stomach ulcer) and viral infections that can dissolve red blood cells. So it is not always a malignant cause, but at least it is being dealt with promptly. Please keep us updated.
Thanks so much for the reply. Hopefully it's something innocent like that.
She was in hospital overnight having her blood transfusion, and she was in hospital all day too.
She's not physically unwell so I don't understand why this was the case.
I'm really terrified that she's been diagnosed with something serious that she's not telling me about over the phone.
What if the blood test they took a few days ago revealed a blood cancer and that's why she's been in hospital?
I'm feeling really scared right now :weep:
It must be horrible just waiting for news but you have to try not to speculate and catastrophise, Toby..You just have to wait for the doctors to run all the relevant tests and then make the correct diagnosis. I'm sure that your mum wouldn't want you to be back on here asking people for their medical opinions on this? Only her own doctors can do this.
When will you next hear from her? Is your dad with you?
It must be horrible just waiting for news but you have to try not to speculate and catastrophise, Toby..You just have to wait for the doctors to run all the relevant tests and then make the correct diagnosis. I'm sure that your mum wouldn't want you to be back on here asking people for their medical opinions on this? Only her own doctors can do this.
When will you next hear from her? Is your dad with you?
I just spoke to her on the phone and she seems fine.
She doesn't know what's causing it still but she seems alright, unless she's putting on a front for me.
Apparently the doctors speculated that it might be an autoimmune disease but obviously my mind keeps jumping back to colon cancer, which I know causes anemia.
But then so do so many other less serious conditions - even stress, I think, and my mum has been pretty stressed lately.
It's just really difficult and I feel like I should be panicking more. I can feel it building up inside of me.
Also, my dad lives with his girlfriend, my parents separated 11 years ago. So it's just me and my younger sister now, which is fine, because I'm 22, an adult.
But I think he's giving her a lift home from hospital whenever that'll be.
I'm just scared that she's gonna come back and break the news that she has cancer or something, although she promised me over the phone that she isn't keeping any secrets from me.
Toby, you're projecting your fear of bowel cancer onto your mum. Lots of things cause anaemia, including non-cancerous 'lady issues'. There's a list of more likely causes before you start getting into cancer territory, so try not to worry so much. (Easy said, I know)
Toby, you're projecting your fear of bowel cancer onto your mum. Lots of things cause anaemia, including non-cancerous 'lady issues'. There's a list of more likely causes before you start getting into cancer territory, so try not to worry so much. (Easy said, I know)
That's true, but I already asked my mum if she maybe lost blood... menstrually (not a word, I know)... and she said she doesn't bleed anymore.
:shrug:
You have to believe her, Toby. I don't think you should be speculating about colon cancer. There's been no talk of colonoscopies or endoscopies and I'm sure being in hospital that she could have had these done if needed.
She could well be seeing a haematologist in hospital but I'm no doctor. I'm sorry that you are going through this..but it's good that she seems fine.
Would you feel better if you could talk to your dad about your fears or is he out of the picture now?
That's true, but I already asked my mum if she maybe lost blood... menstrually (not a word, I know)... and she said she doesn't bleed anymore.
:shrug:
The docs will sort her out...
Have you got people who can support you though?
I get along with my dad but I'm not as emotionally open with him as I am my mum.
I feel sick.
I spoke to her and she's staying another night in hospital so they can run more tests.
What tests could they possibly be doing? Haven't they exhausted them all by now?
I think you need to ask this question yourself to the doctors who are looking after your mum. Do you have a contact number for the ward she is in? If you don't you can find out where she is by ringing the switchboard at the hospital.
When it comes to haematology there are so many different blood tests to run and it takes time to get results back. I think the doctors are playing safe by keeping your mum in because they are then able to monitor her carefully as opposed to discharging her too quickly without coming to any conclusions about the anaemia and how to treat it. It's also better for you because you would be terribly anxious and worried about her having a repeat episode with her eye.
When it comes to haematology there are so many different blood tests to run and it takes time to get results back. I think the doctors are playing safe by keeping your mum in because they are then able to monitor her carefully as opposed to discharging her too quickly without coming to any conclusions about the anaemia and how to treat it. It's also better for you because you would be terribly anxious and worried about her having a repeat episode with her eye.
I'm definitely really glad they're getting to the bottom of it.
Do you think they'd have ruled out any serious blood disorders by now?
Obviously there are a few that I'm thinking of in particular :scared15:
No I think it takes time to make a diagnosis with blood disorders..If that's what's being investigated. But you have to find out for yourself rather than ask us.
I do ask my mum over the phone but I have no way of asking the doctors etc.
Yes you can. Ring up the ward and ask to speak to someone who is caring for her. You are her adult son and have a right to know what is happening.
I remember some years ago you were terrified yourself of having bowel cancer…convincing yourself you had it. Now you are convincing yourself your mother has it.
Ring the ward, if you don’t know the extension number, the switchboard will find it for you, if you give her name. Ask for an update from someone involved in her care. I’ve done it on several occasions, they are usually very good.
Try not to spiral Toby, I know what it’s like when someone’s in hospital and you feel helpless stuck at home. I myself took to pacing the floor, up and down. Horrible but talking to someone on the ward does help, if you can.
Keep in touch….
Finding out actual facts- as opposed to wondering and guessing and spiralling as a result-is what you need to do here.
This may seem a daunting prospect but it's something which you can do and you have every right to ring up as her adult son.
Thank you all for the advice but she's actually home now, they released her earlier than expected, which is a relief
She seems fine; obviously they don't know the cause of the anemia yet but they're going to continue with the tests
I'll keep you all updated, but thanks for helping me through the past couple of days
Great news Toby…:yesyes:
Take care and keep in touch.
Yes please keep in touch...You've coped very well, Toby.
The past couple of days have been fine, but today I've been worried because she went for a bone marrow biopsy.
Does this mean that they think she might have a blood cancer?
Hi Toby -- believe it or not, your bone marrow is what produces your red blood cells in a process named "erythropoiesis." So the fact that they're looking at your mum's bone marrow, though, doesn't necessarily mean they think she has cancer.
I appreciate how terrifying this must be, but please don't get ahead of your mom's doctors.
My own mum had a kidney problem detected as an "incidental" finding -- they found a massive cyst on one kidney and two smaller cysts on the other -- and I was distraught, assuming it must be cancer, until an acquaintance with kidney cancer (who survived and thrived!!) assured me that cysts are extremely common and come and go, and not worry unless someone had explicitly told us it was a worrying thing.
Anemia is also extremely common (so common evidently 1/3 of the population is anemic at any given point in time?! So says Wikipedia!) -- and in many cases treatable. Hang in there.
Hi Toby -- believe it or not, your bone marrow is what produces your red blood cells in a process named "erythropoiesis." So the fact that they're looking at your mum's bone marrow, though, doesn't necessarily mean they think she has cancer.
I appreciate how terrifying this must be, but please don't get ahead of your mom's doctors.
My own mum had a kidney problem detected as an "incidental" finding -- they found a massive cyst on one kidney and two smaller cysts on the other -- and I was distraught, assuming it must be cancer, until an acquaintance with kidney cancer (who survived and thrived!!) assured me that cysts are extremely common and come and go, and not worry unless someone had explicitly told us it was a worrying thing.
Anemia is also extremely common (so common evidently 1/3 of the population is anemic at any given point in time?! So says Wikipedia!) -- and in many cases treatable. Hang in there.
Thank you for the thoughtful response, that helped a lot
It's not the anemia that I'm necessarily worried about, it's whatever's causing it
But you're right, I just have to hope that it's something benign and treatable :)
Fingers crossed, Toby. I think you've been brilliant so far.
I'm all of a sudden extremely worried again
Do you think they performed the bone marrow biopsy to diagnose leukaemia because they suspected it, or was it to rule things out?
Is it routine when trying to figure out why severe anaemia is present? I've seen some conflicting reports
It's no use asking my mum. She said it's to check for "all sorts of conditions" but she might not be telling me the whole truth - such as, maybe the doctor told her that they suspect leukaemia, hence the biopsy, but she doesn't want to worry me so won't tell me all the details. She, herself, really doesn't seem overly fazed by it, which is a good sign, and I don't want to worry her, but still... it's on my mind a lot and I'm expecting the worst.
The bone marrow biopsy is an important part of investigating her severe anaemia but I appreciate how worrying waiting for results will be for you, Toby. Your mum is right though...This will be to check for a wide variety of blood dyscrasias although you will naturally focus on your worst fear. Haematology is so complex and wide ranging.
You need to look after your mum by not speculating and googling stuff which you can't interpret properly. You need to take your lead from her and be supportive by not fussing around her and letting her see that you are anxious?
The bone marrow biopsy is an important part of investigating her severe anaemia but I appreciate how worrying waiting for results will be for you, Toby. Your mum is right though...This will be to check for a wide variety of blood dyscrasias although you will naturally focus on your worst fear. Haematology is so complex and wide ranging.
You need to look after your mum by not speculating and googling stuff which you can't interpret properly. You need to take your lead from her and be supportive by not fussing around her and letting her see that you are anxious?
Yup, so worrying
I do try not to seem anxious around her
She has an appointment to check her iron levels tomorrow (so she says) and I'm scared that she'll need another transfusion - that would almost certainly send me into overdrive because needing another transfusion so soon after the last one... that surely indicates something incredibly serious, if she's losing so many red blood cells in such a short time
I'm worrying about hypotheticals here, but still, anything is possible. This definitely wasn't on my 2022 bingo card
I spoke to her this morning and she says that they found nothing OBVIOUS to worry about when they took her bloods (apparently quite a few times), which is why they're running all these tests
Provided that she isn't lying or keeping anything from me, this is definitely a good sign, because I know most leukemias are quite easily detected. Surely revealing blood tests for leukemia would've been run by this stage and she'd be starting chemotherapy by now / be in hospital most days. So if she's telling me the truth, then that's reassuring. Apparently they told her that she's a mystery.
But then I know if blood disorders are ruled out when the bone marrow biopsy results come back then I'll be straight onto worrying about her GI tract :wacko:
I need to find a way of coping with this because it's too hard and the waits are too long
I also can't imagine how scary it must be for my mum, who doesn't seem worried, but obviously she is inside. Although she's a very rational, relaxed and meditative person, which can't hurt in a situation like this
The very last thing I want is for her to be scared, but then there's nobody I can speak to who knows more about her condition than she does
SIDE NOTE: I forgot to add before that they did a chest x-ray during her initial hospital stay and they couldn't see anything worrisome, which is good
All this uncertainty and waiting for results is horribly stressful but you just can't work things out in your anxious mind and speculate on any potential diagnosis when even her doctors are unsure and nothing is clear cut.
Maybe you could speak to your mum and ask to go with her to her next consultant appointment? Could you cope with that?
All this uncertainty and waiting for results is horribly stressful but you just can't work things out in your anxious mind and speculate on any potential diagnosis when even her doctors are unsure and nothing is clear cut.
Maybe you could speak to your mum and ask to go with her to her next consultant appointment? Could you cope with that?
I don't think she'd like me tagging along everywhere honestly
Today she's having her iron levels checked again, hopefully she doesn't need another transfusion
I don't mean to every appointment. I just feel that having a bit more clarity about her condition could help with your guesswork? Of course your mum has a right to confidentiality.
Update: apparently the consultant said today that based on early results from the bone marrow biopsy, it doesn't look like it's anything sinister, at least not in terms of blood cancers.
But she still had to have another blood transfusion.
I don't know if my mum is lying to stop me from worrying, but great news if they genuinely have ruled that out!
I don't see why she would lie to you because she wouldn't be able to hide having a blood cancer. I understand your caution but it's very good news.
Have faith in your Mum? She's dealing with this calmly and is having the appropriate treatment as advised by her consultant. Don't try and work this out for yourself?
Hi everyone,
It's been a few weeks (22 days) since my mum's bone marrow biopsy and she hasn't received a phone call or anything from the doctors, so hopefully that rules out anything like blood cancer or aplastic anaemia? I don't know, I don't want to jinx it, but the results take 1-2 weeks max to come back apparently, and my mum claims that the consultant said during her last visit that from the results, it doesn't look like it's anything serious.
She's going back today for the first time in a short while to have her bloods checked again and to have a transfusion if need be.
Also, she clarified that she apparently doesn't have an iron deficiency, rather a low red blood cell count, so her body isn't producing enough? Or something's inhibiting the production? I don't know, I can only imagine what it might be, but if she's not iron deficient then doesn't that rule out a bleeding tumor in the bowels or elsewhere?
That's a question she should ask her haematologist but seeing that she hasn't been offered a colonoscopy or gastroscopy and has been referred to haematology then I would imagine the focus is on blood cell production?
I know you want answers straightaway, Toby and waiting is horrible but hopefully she'll find out more today and maybe she could write down what the consultant says and show you later...providing you agree not to head straight to Google to research the hell out of any potential diagnosis?
My mum has just been diagnosed with "Large granular lymphocytic leukaemia," and it's something that she could've been living with for maybe two years; thankfully it's not aggressive, I don't think.
They have her on chemotherapy tablets now and she's going to need a blood transfusion every week from now on, but a stem cell or bone marrow transplant might be on the cards in the future.
She's taking it fine and doesn't seem too worried because the prognosis is good.
There's no cure for the disease, but because it isn't aggressive in the vast majority of cases, many people live long lives with LGL leukemia. Living with the disease means getting blood work done every four to six months and doing your best to stay well.
Not sure how I feel...
I think this is quite understandable..Leukaemia is a trigger for you but remember that there are various types and your Mum's type has a good prognosis. It's been picked up now and she's having treatment.
Do you want and need to find out more about the diagnosis from her or from her haematologist? Can you cope with this or will it make you spiral when you need to stick to facts not fears?
I think this is quite understandable..Leukaemia is a trigger for you but remember that there are various types and your Mum's type has a good prognosis. It's been picked up now and she's having treatment.
Do you want and need to find out more about the diagnosis from her or from her haematologist? Can you cope with this or will it make you spiral when you need to stick to facts not fears?
I'll be fine as long as my mum isn't scared or worried, because I just can't stand the thought of her going through this all alone and being afraid. I want to be there for her but she wouldn't want me to be clingy and I don't want to constantly remind her of it by asking a million questions so I don't really know what to do?
She seems alright? But what if she's just putting on a brave front?
There are support groups available for her but she says she isn't interested. I really want her to go to one of these so she doesn't feel alone.
I was planning on paying for private therapy anyway so I guess this just gives me more reason to need to do that
Groups aren't for everyone. I certainly wouldn't want to go to one. She'll have her own way of managing this and maybe comparing symptoms with others isn't what she wants?
I would respect her wishes and be there for her if she needs you but step back if she doesn't want to talk about it?
I would encourage you to seek help for yourself though...This will be a test for your HA coping skills as you know.
Would any of these support groups be available for you to go to? Maybe you need support as well.
support from your peers would deal with facts and experience, stopping you spiralling into imagination. Plus with the knowledge you gained you would be able to help your mother when she has questions.
You are doing a great job….I imagine your mother is proud of you.
Thank you both, I'm doing surprisingly well. I'm not too worried right now because my mum doesn't seem to be, and everything seems manageable. One day at a time, I guess
I'll definitely seek therapy, not as part of a group, but 1-on-1, to talk about a multitude of issues including body dysmorphia, social anxiety, this situation etc.
I'm sure that your mum really appreciates your attitude towards her condition. She's dealing with it calmly and sensibly and you are too. The best thing you could do for her. She's not alone with you supporting her like this.
I'm becoming scared of all the variables and things that could go wrong... what if she doesn't respond to treatment and has to go on chemotherapy drugs? I don't inflict these worries upon her, but it's in the back of my mind and I'm terrified. The anemia is causing her to be slightly short of breath a lot and it just feels very real, and I don't know how to feel.
Good news - she's responding well to treatment (tablets) for anemia, which has been the main problem thus far
That's great! Toby, I think you're being an absolute hero and you've come so far.
Good news - she's responding well to treatment (tablets) for anemia, which has been the main problem thus far
Concentrate on the facts and not the variables/fears, Toby? Great news but please do yourself a huge favour and cut out doing your own "research"...
That's great! Toby, I think you're being an absolute hero and you've come so far.
I'm definitely not a hero, but thank you! One day at a time is the best way to deal with things
Concentrate on the facts and not the variables/fears, Toby? Great news but please do yourself a huge favour and cut out doing your own "research"...
I will try to, but this disease is so rare that there's not too much information out there about it, so that shouldn't be too difficult. I just take comfort in the fact that it's a treatable condition and rarely (touch wood) fatal.
Hi Toby, haven't been on this for about a week, but came to see what the update on your mum was.
Sorry to hear about the diagnosis. Anytime Leukemia or cancer is mentioned, of course it's scary, but good news that it seems very treatable and manageable. My aunty's husband has a a type of bone marrow cancer, which cannot be cured, but it can be managed and he is doing ok after being diagnosed quite a few years back now.
It sounds like you're coping well to me, and I think you're doing a great job of supporting your mum.
You mentioned 1-1 therapy for yourself. I think that's a great idea. I've recently gone through a round of counselling after losing my dad last year, and it does wonders to talk to someone about feelings and worries without being judged. Maybe ask your GP if there are any charities in the area that offer a counselling service?
All the best.
Hi Toby, haven't been on this for about a week, but came to see what the update on your mum was.
Sorry to hear about the diagnosis. Anytime Leukemia or cancer is mentioned, of course it's scary, but good news that it seems very treatable and manageable. My aunty's husband has a a type of bone marrow cancer, which cannot be cured, but it can be managed and he is doing ok after being diagnosed quite a few years back now.
It sounds like you're coping well to me, and I think you're doing a great job of supporting your mum.
You mentioned 1-1 therapy for yourself. I think that's a great idea. I've recently gone through a round of counselling after losing my dad last year, and it does wonders to talk to someone about feelings and worries without being judged. Maybe ask your GP if there are any charities in the area that offer a counselling service?
All the best.
Thank you! And I'm glad that your Aunty's husband is doing good.
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