Dear drdspq -- earlier in this thread I made reference to my having "non-positional" vertigo, having pulled out the papers I realize that, same as you, I have BPPV! My understanding, as explained to me by the GP at the time of diagnosis, is that this condition is a purely physical one. It is caused by crystal-like structures in the inner ear getting in the wrong place, and making you feel unbalanced in certain positions. What I don't understand properly, is if these crystal-like structures are normally in the inner ear, or if the BPPV develops when they appear. Looking on the web last night, it says that BPPV can be caused by a virus, or that it can develop when the patient doesn't move their head very much. I also note that although nobody actually says the BPPV is linked with BC, a lot of sites show up when you google "breast cancer and BPPV"! From my own BC experience, I know that I moved around less while I was going through treatment. I also have been told by the GP that in this post-treatment stage, my body is more vulnerable to viruses. I have, for instance, just had a case of shingles affecting my right eye!
As for Menieres Disease, my understanding is that it can be caused by immune system problems; so certainly could be linked to the process of chemotherapy.
My experience with BPPV, (and I have had it for over 6 yrs -- long before BC reared its ugly head ) is that it is very disabling when you first get it; but you learn to deal with it and it becomes less of a problem. I got very nauseous at first, but now I don't seem to anymore. I just have to slow down when it occurs and move carefully.
Anyway, hope my thoughts and own experiences are a little bit helpful. I'm afraid there are just a whole lot of nasty things that happen to us post treatment! All the best XXXXXXX
Bobbie -- just found out from another thread that you are near Salisbury -- so am I! I have sent you a PM. Louise
Dear Bobbie -- so sorry that you are still suffering! Yes, I think seeing someone about the depression would be a good thing. As some wise person told me when I was first diagnosed with BC, "take any help that is offered"! I don't know if it is any help, or if it is even relevant, but I have something called Benign non-positional vertigo, which also makes me dizzy. When it first affected me it was absolutely devastating and I couldn't even get out of bed for the first week. I was given some medication, but when I read about the terrible side effects I decided not to even start them. Now, about 6 years later, I have pretty much learned to deal with it. I still have it, but can get through it. I have no idea how this condition compares with your situation -- but you have my full sympathy!
With lots of love, Louise
Dear Bobbie -- what is minieries disease? My instant recall makes me think it has something to do with ears and/or balance, but can't quite think how that would be helped by exercises. In any case, I'm sure its something else that you didn't really need and sorry to hear that you have it!
with love, Louise
I'm hoping that the lack of posts on this thread recently mean that we are all coping at the moment! I went this weekend to the first reunion of the 2013 Febrauary Valentines. There were 15 of us in attendance. All of us had different stories of our treatment and recovery, but lots and lots of similarities, too. We were all getting better; but fed up with how long it was taking!!!!!! We found the weekend very moving and, perhaps most important, lots of fun! Hope all of you on here have had some fun moments in the last weeks.
With love, Louise
Please consider yourself well cuddled Bobsicle! How we are not all feeling totally negative all the time, I do not know. With this weather in addition to everything we are going through within ourselves ------!!!!!!!! One of the Ladies on my Valentines FB page said yesterday that she was beginning to think that treatment was the easy part and that life afterwards was the tricky bit. I think I'm beginning to agree with her! With much love, Louise
Thanks for your reply, Jo. I know just what you mean about head funk. One of the things i liked about the Galgut book was that it told me that was normal and gave ideas about coping and she's had breast cancer herself and its all about breast cancer. Hope you find it useful.
I'm really intrested to hear about Dancing in Limbo. I had a look on Amazon and your right it's a bit wordy but it looks interesting, I might get it. If you read the thread you'll know I keep recommending a book called Emotional support through breast cancer by Cordelia Galgut. It's a much easier read than the Dancing in Limbo one, you might be interested in it. I think it's brilliant, it told me I was not going mad! Anyway, it's on Amazon if you want to have a look. Kazey
I truly think that men don't have any idea how to treat us! I think that they actually need support too, but -- being men-- refuse to accept it when it is offered.
Only just found this reply, sorry. I really hope the book helps you like it's helped me. It's so easy to think your unusual but it made me feel like i'm not the only one and gave me some different ways of thinking.
Only just noticed your reply. Your so right that lots of us are struggling and i noticed that on the threads too. It's so easy for us to think we're the only one. That's why i liked Dr Galgut's book.
Take care of yourself,
i feel like that too about my partner, ive been fine with everyone except him. dont know what it is either. i went and told the doctors that i wanted to kill him and bury him in the garden!! got tablets straight away. then i felt awful after when i thought about it, but there you go, too late once youve said it. they think i'm nuts i expect!
i like being in bed too. never used to stay in bed past 6am even when i wasnt working, stay there all day if i could now.
I'm with you Bobsicle! I fear I have become terminally lazy. I never get out of bed until my Husband drags me. (Before BC, I always used to bring him up his tea!) I sit around all day and usually fall asleep in my chair in the late afternoon. Its getting serious now, as we have a plant nursery and this should be a really busy time of year -- our first plant fair of the season is in 2 weeks. Don't know if it is reassuring or terrifying, but I read somewhere on another part of the Forum that one lady had been told by her Oncologist husband that 3 years is a realistic recovery time!!!
i was diagnosed 1 year ago this week, had mx and chemo, rads and now tamoxifen. i'm back at work full time since last september, worked a lot through treatment. i had a bit of a meltdown in december 2012 and got anti depressants, which i think are working. i'm struggling to think though, as in to actually focus on anything and give it proper thought. i am fine at work, thats just sorting stuff out, but at home - we are thinking of moving, i jus cant seem to care one way or another - i feel like im slower, got no energy, like ive had something taken away and now i dont function on all cylinders
anyone else had this feeling
Motherhubbard -- and everyone else who is posting -- you, we, are definitely not alone. I am a member of the February 2013 Valentines. We had a very active thread going during treatment (which for me ended in July) but have now largely moved to a private facebook page as we are talking mainly about life and non-BC things!
Of the 28 Valentines, there is not one who is feeling anything like normal. Three of us returned to work immediately after treatment was finished, 2 of those are now on semi-permanent sick leave. Several others have left the jobs they had before treatment. and have either taken early retirement or are considering their options. Nearly all of us are or have been on anti-depressents. Most have gained weight, are having sleeping problems and cry a lot. Three have recently been diagnosed with diabetes.
In short, we are finding recovery fully as challenging as treatment. They don't tell us this when we are diagnosed; but perhaps they know that we already have too much to cope with to be able to deal with this other little sting in the tail. But Ladies, we CAN get through this together! So keep posting. Use this Forum as a place to say anything you need to say and ask for any support you need to have!
With much love and many hugs,
Thank you for the information about the book. Looking at different threads it looks like a lot of are struggling in different ways following treatment.
Thanks again. Take Care Gilly x
I'm in a dark place at the moment too. I've started some councilling and anti-depressants. I finished chemo' and radio' in January but spend most of my days anxious and crying. I don't leave my house as it is the only place that i feel safe. I can't imagine going back to work or even getting my life back. I love this forum but usually i just read the stories because i am feeling so bad all the time i don't want to upset other people. I just feel as though i am living under a black cloud and i feel so lost.
sending big hugs
I really feel for you. try a short book I read recently by a psychologist who has been through it herself. it's called Emotional support though breast cancer, by Cordelia galgut. it really helped me. You can get in on Amazon. i hope it helps you too.
I know how you feel. i've just read a book recently that has really helped me. It's the only thing i've read by someone who understands how we feel because she's been through it herself and she's a psychologist. I think you might find it really helpful too. It's called Emotional support through breast cancer and you can get it through Amazon. I hope it helps.
I'm sorry to hear you are feeling this way. To help you along I have put for you below the link to BCC's publication regarding moving forward. I hope you find it helpful. Also please do give our helpline team a ring they're here to support you through this. Calls are free 0808 800 6000 lines open weekdays 9-5 and Sat 10-2.
Hi Bobsicle (and any other lovely ladies who are also plagued by the fog)
I can totally empathise with how you are feeling and just to reassure you, things DO get better, but as Yankes has said to you, it can take a long long time to adjust to life post BC, far longer than anyone who has not experienced this disease, can truly appreciate and sometimes that is half the problem Those who love us desperatelty want us to slip back to our usual selves, once treatment is over and for many, this is just not possible and certainly was not for me.
I was DX way back at the end of 2009 and it was the reconstruction that i stuggled with the most. Yes i wanted it, no i was not told how it would look or feel and no i had no idea now a HEAVILY scarred false breast coupled with the SE's of tamox was going to impinge on my relationship with my OH. It is only now as in last couple of months, that i have stopped raging at the unfairness of it all, for me the pain has died only recently.
Bobsoicle i totally get what you are saying and i felt the same as you for months then years. So, if you can access some local support, please do it. Anything is better than bottling thoughts up, because if left bottled for too long, eventually the lid comes off and there is an explosion which can be quite scary at times.
Cry, rant, thump a pilow, cry some more and scream your head off it it helps. BC is so unfair and can leave many of us in a state of shock and bewilderment for a long time to come.
Baby steps, lots of TLC, being nice to self and time can all help healing, but it won't happen overnight.