I am scared to tell my oncologist about the things that are going on...I can't tell if the symptom's are related to this blood disorder or old age.....shortness of breath, abdominal and facial swelling seem to be the major issues...I am bruising without cause....or maybe I ran into a wall and don't remember. But most of all the extreme tiredness constantly......and an overwhelming feeling of nausea that just comes and goes....Seems that the days I feel absolutely fabulous are followed by days of extreme fatigue....I avoid conversations with the people I love by saying I feel great....the last couple of weeks I have been short of breath and it gets bad at night. I have been healthy all my life and now it seems I am falling apart. I can't talk with my husband or kids about anything, I have always been there rock. Thanks for letting me air....wheew.
Am I crazy?: I am scared to tell my oncologist... - CLL Support
Am I crazy?
Absolutely, talk to your doctor. If CLL is the culprit you need to know if there are changes that need to be dealt with. If your symptoms aren't related to your CLL then it is important to figure out what is causing them. The shortness of breath, especially, concerns me. It could be heart related, a lung infection, so many things, and the cause could explain some of the other symptoms, especially the fatigue.
Let us know what you find out. You can always talk here!
Pat
I'm sorry to hear that your are scared to tell your oncologist about the things that are going on. Can you share why you feel this way? I'm very concerned that you are feeling so alone. Right now you need someone to be there for you and to help you find out what's behind these distressing symptoms. While we can support you through this - after all many of us have been through similar, you really need to find a medical specialist, ideally a trusted family doctor supported by a hematologist for your CLL, to help you correct whatever is behind these distressing changes that are making it that much harder to find the energy to do so!
If you can say roughly where you live in the States, I'm sure you'll be provided with recommendations on good CLL specialists close by. Meanwhile, check out the pinned Developing a reliable and current international list of CLL Information & Resources", which contains this link to CLL doctors:
For now, as Pat says above, your priority should be to talk to your doctor so that you can get some investigations under way to identify what is causing these changes.
Please keep us informed,
Neil
Hi LauraMerie
the advice given by Neil and Pat is spot on, and being scared and feeling alone make things worse for you. Lots of helpful people that want to support you here, but do hope you find someone close to share with. A practical tip that might help you, which I used and it literally saved my sanity. Analyse all your symptoms and feelings, jotting them down, then when you are confident you have everything captured, list them down clearly and either present them in person to your medical practitioner or do what I did as I did not think I could speak clearly without being upset. Write a letter enclosing your list and marked strictly Private and confidential and send it, not forgetting to request an appointment to discuss.
We'll be thinking of you.
Sending a mental hug
Bub
Hi I once asked my GP if I was having panick attacks because of the way I felt,especially at night, but was told that it was unlikely. Painkillers help as do sleeping tablets. I know some people don't like taking them but short term they help a lot (I have 28 sleeping tablets a year).As for being OK one day then terrible the next I know what you mean. I can be fine then go to bed at night have a bad night then the next day is terrible. Fatigue affects most CLL patients. Dr's have no cure and don't know why, so I have found dismiss this. Bruising could be related to platlets. But all this is personal. So these are my experiences. Speaking to your Dr is the best thing. I have found that this site is where you can "talk" to people who understand what you are going through. Good luck
Hi Laura, had to reply immediately cos I know just how you are feeling. My husband is the one with the CLL (past 8 years) after 50 odd years together and much anxiety!! However, still going strong. Would guess we are in your age range. Then 3 months ago I was diagnosed with cancer and the world fell in. Two small ops later and very little sleep in 3 months, ended up frightened of my own shadow. Excellent family support, but a living nightmare. Now I am the toughie in this family and look after everyone else, so I am here to tell you that some if not all of your symptoms just could be in your head (in the nicest possible way) and lack of sleep doesn't help. Do what I did ring up Macmillan first and speak to a nurse, tell her all, and she will advise you. You will feel better for it, you sound as tho you need some support. You can tell I am better with other people than I am with myself, but I mean well. All the very best to you, I do wish you well and love. Sylvia x
Brilliant advice from the others Laura Merie. You're not going crazy, you're just using avoidance techniques in the hope that it will go away if you ignore it. I can empathise with that totally.
Because you've been the family rock for so long you've had to keep your own problems under wraps. But the CLL is something that's been forced upon you and it's your turn to ask for support now.
Get a specialist you can trust and consult immediately about the breathlessness, it can be symptomatic of so many things not necessarily CLL related. And it could well be that some symptoms are anxiety related though spontaneous bruising is often CLL linked.
I hope you have someone you can talk to and trust but please use the understanding people on here if you're struggling with this. I think strong independent people who have always had to put others first find it particularly hard to admit their changing needs. None of us are invincible as I'm having to accept myself (laid up with a bad cold my dentist kindly gave me!) Grrr!
Time to get yourself sorted, these medical problems may be exacerbating your CLL so please talk to a physician you trust to start addressing them. You're still fabulous to your friends and family even when you're sick and need their support.
Please keep us informed.
Warmest best wishes,
Newdawn x
Hi there LauraMerie
No your not going crazy, you are just going through a very tough time at the present. I would guess that most of the people who visit this site, will empathise with what is happening in your world just now, whether that be due to aging, or having to deal with other health issues, as well as their CLL.
If a tree doesn't bend in the wind it breaks, and I think, like most of the people on here have suggested, that communication with your family and doctors is really important, and indeed here in this forum ... you ended you post ....wheew ... sometimes you've got to get it all out, you can still be their rock, a rock and with CLL ?, so be it.
Bubnjay's suggestion works for me, I keep a simple health diary, not something that consumes my attention, but allows me to go through my notes and write a summary of how things have been between GP/Hospital appointments.
I used this technique yesterday at a hospital appointment for a long standing eye problem, a rare problem that for the first time in 23 years, seems to been taken seriously ... The consultant asked if he could retain the notes that I had provided.
The strength in your post is that you are the family rock, and now your riding the CLL bronco, there is no shame when the bronco throws you off with a thud, but you'll do what you always do .... and climb back on.
PS
You are among friends here .... wheew away, whenever you need to.
LauraMerie
Good advice above - but you do need to tell oncologist. I don't know what you bloods are, but shortness of breath might be lower-than-normal Hb levels. However oncologist can not make decisions with you unless they know everything
I am meant to be on monthly blood tests, following unsuccessful steroid treatment for AIHA. I know my Hb dropped last month, but two weeks after the last test I suspect my Hb has dropped again (I was pretty fit, but now two flights of stairs has me puffing - or even needing to stop before getting to top). So I am going to force another (early) test today
Hi there
Lots of good advice above. I suffered from lots of inexplicable bruising and last year, post treatment, I was extremely breathless. I now realize that in my case it was connected to low haemoglobin and platelets. I, like you, found it hard at first to tell my oncologist about all the little things that seemed to be wrong with me. I didn't want it to sound like I was wining or a hypercondriac. It took me a while to realize that it was really important to mention everything and that the doctor would not have a clear picture unless I did mention all the complaints. I got over this by writing down all my complaints and handing the list to the consultant. He was grateful. It helped him with the letter he has to write to my own doctor after he has seen me, and he kept a copy in my notes for future reference. Keep a dated copy yourself too. It is useful to look back a few months later and see how things have changed.
All the best for the future
Ruth
It is sometimes very hard to separate a distressful symptom from what we are told are the symptoms specific to CLL. I had carried a very large tumor burden in my blood, lymphnodes, spleen and bone marrow without expression of classic "B" symptoms yet I began to have difficulty breathing when trying to sleep. I also have a rare non hemic autoimmune condition resulting in kidney dysfunction coinciding with any rise in ALC (Absolute Lymphocyte Count) that was dismissed by several doctors. The difficulty in breathing and the kidney problem initiated my need for treatment and not classic "B" symptoms. A CLL expert can know a tremendous amount of information about the disease that is CLL and its treatments, only you have the ability to know your own body.
Do try to open up to both doctors and family/friends to get appropriate help with any symptoms no matter where they originate.
WWW
Hi LauraMerie
just a little note to ask, how are you, and to say I think we all hope that things are improving for you.
Best wishes
Bub
Suggest you get some counselling , your G.P. should be able to sort this for you.
I am overwhelmed by all the wonderful comments and support. I was reading most with tears streaming down my face. Thank you all. I can't express my thankfulness to All...
I am going to keep a journal, this way I can remember what I really want to say when my oncologist ask me how I have been.....I live in the Orlando, Fl area.....and going to MD Anderson.
Thanks to all ................I will be back...
Certainly having a list of questions and observations for your consultant is important. Even if you go together with someone it can still be useful to record the consultation to make sure you understood everything that was said afterwards. You can use a dictaphone but phones and ipads etc have this capability too.
take care
Andy
Andy - my man! The best thing I did for myself, and now always recommend for others is to record all appointments. I was shocked, initially, at how much I was missing when I listened to recordings later. This is true even if you take a relative or friend to record information. You are dealing with a foreign language, as they are, in addition to fear.
Pat
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