Hi Divvy, Thankyou your post made me smile, especially about your toe nail lol I am glad you mentioned it because my big toe nails have gone white. I was going to go to the doctors this week about the pain and my sleeping problems, and I was going to mention my toenails. I get so fed up when I go to the doctors and I have such a long list of things to tell him, I feel like a hypochondriac (do you like how I could spell that, I have my dictionary on my desk lol).
Well I dont know what is going to happen to my sleep pattern at the moment. I was just so exhausted this afternoon I went for a lie down and hubby left me to sleep. I didn’t wake up till 6 30. I woke up didn’t know what day it was, whether it was 6 30 am or pm I am in a right muddle, but at least I had about 4 hours of uninterrupted sleep !!! looks like it will be a long night.
Well I hope you get a good nights sleep, and dont find any more toe nails in strange places 
Heather
xxxxxxx
Hi Heather
I know what you mean about the sleep thing & the thing is it keeps changing. I had a horrible spell of not being able to get to sleep at night whatever I did, then struggling to get up in the morning. Had to set the alarm when going for rads at 11.00 a.m. Other times I might get to sleep O.K but then be wide awake again after an hour or so. At present I’m falling asleep in front of the telly about 10.00 p.m, go to bed & am awake about 6.30 a.m., maybe my subconscious is preparing for starting back to work soon. Having said that, night before last I was reading a book at 4.00 a.m.,having woken up & not been able to get to sleep again.I’m usually disturbed during the night though, sometimes for a toilet visit, sometimes just by pain when moving.
Hi Vodka and peacock
I remember you both well from going through treatment in 08 (dx April 08). It’s lovely to see your names coming up again, as so many familiar names seem to have disappeared. Some have died, some no doubt feel well and no longer come on here.
I still have ‘symptoms’ from chemo - at least that’s what onc says.He tells me to be patient, but I want to feel well now!I can’t say I’ve noticed any improvement in the last 6mths, and my spare tyre is taking over, and doing my head in. I feel like a really ancient lady although only 40, what with the aches and pains and stiffnes, and running around after my 2 little girls (now 6 and 4) and working full time.
No one but you understand, and like you I feel I can’t keep going on about it. I burnt my bad, lymphoedmic arm this week, and that brought it all to the fore again. It’s healing well, thank goodness.
Take care ‘old’ friends, let’s hope we all feel younger again soon!
Kinden
x
Hi Kinden
It’s nice to hear from you, one of the “old” crowd, coming up to that dreaded 2 year anniversary! Sorry to hear that you’ve had a mishap and it must be awful to have lymphoedema and cope with 2 young children, I do feel for you. Yes, agree totally as you say, it would just be nice to feel completely well again.
Take good care
P xx
Hope everyone has had a good weekend? xx
Hi Kinden
Nice to see some of the old names. I remember you and Peacock among others that no longer post.
It must be hard for you trying to cope with the chemo symptoms while trying to look after young children, and working. Like you i feel old and i’m only 41. I bought those knickers that give you a flat belly, well my daughter said that the bottom bit of my belly looks flatter it’s just the top part hanging over…can’t have it all ways i suppose. i can’t go back to my job and that hurt as i loved my job, i have come to terms with it now so i’ve stopped crying about it now. Sorry about your arm, take it easy.
I’ve read comments about what others onc’s have said regarding pain and the onc’s say different things. My onc told me that the chemo would take 3 months to get out of my system, then it was 6 months, then it was 1 year and lastly was 18 months. now she told my bcn that the chemo should be out of me by now. I’m confused!
keep in touch gang!
xxx
can someone tell me more about fibromalygia?
I’m wondering if it’s worth mentioning to my bcn. Not that i want something else wrong with me, i just want to get to the bottom/cause of the pain. my onc has discharged me from her care and is not convinced that my ongoing probs are caused by the chemo. i used to go to the gym and was resonably fit until dx,surgery,chemo and rads. My life is not the same. Now i’m in pain most of the time and the pain is from head to toe. it moves about but can also be in several places at the one time.
i just want a doctor to listen to me and not just put me down as being a hypocondriac. The pain is real and not in my head.
Hi all, hope you all had a good, and less pain over the weekend and that the sun shone nicely for you all.
Vodka, of course your pains are real - and like you are suspecting I have often wondered if fybromyalgia is the cause of mine too. I think as one lady confirmed, it is very difficult to diagnose but I know a lady who does have it and she finds exactly the same, good days and bad days, she doesn’t sleep well and is also on AD.
Sometimes just getting a name for something helps, its the not knowing why that gives us the grief.
I am off for my back xray tomorrow - can mets be diagnosed with a simple xray? I think they are ruling out simple things first and I should say that I don’t think its anything serious, but you can’t help that little inkling of worry. I should have the results tomorrow too so will keep you posted.
xx
you know peacock, you hit the nail on the head. It is definately the not knowing why or what that gives us more grief.
i have good days and bad. On the good days i think that people may think that i’m ‘at it’, which as you all know we’re not, we’re just making the most of the pain free moment! I also don’t sleep very well.
Peacock, i wish you all the best for tomorrow. I don’t know if they can detect mets with an x-ray. My GP sent me for an x-ray because i was breathless but he also did bloods and an asthma test all of which was clear. He thinks it could be lung scaring due to rads. So your problem could be linked to all the treatment you’ve had.
I’ll be thinking of you tomorrow, but yes please do keep us posted. I know your worrying and i know its easy to say but please try not to tie youself in knots. I know we all do it with every pain and niggle. I compare myself to my mum who died of secondry bc so i’m in knots most of the time. Take care. xx
Hi Vodka and peacock
Hope today is a good day for both of you.
peacock - I had a very painful hip at the end of treatment, which didn’t go away, so I was sent for an xray. The radiographer looked at the picture and asked if I had been sent for a bone scan too - I said no, but next day got an appointment for one. I saw the referral form, which said ‘?bone mets’, which was v scary in Jan 09. I had the isotope bone scan (they inject something radioactive into you and then do a full body scan. I saw teh result on the screen which was weird as I saw my skeleton and my fat around it). Happily all was clear. I was sent for it cos the xray showed a ‘lucent area’ in my hip, so what I am trying to say is that I don’t think xray can diagnose bone mets but it can exclude them if nothing is shown. Good luck and let us know how you get on.
My latest worry is pain in my kidneys. I wake up with it every day, particularly in the right one, my affected side. It does go away during the day though.
Hugs
Kinden
xx
Hi girls
How are we all doing this week?
I’m very pleased to say that my back ache is a disc problem, isn’t it funny that these days we’re happy with whatever it is as long as it’s not related to C? I don’t know what the treatment will be as I need to speak to my doctor, but I am reassured.
Kinden have you been to see anyone about your kidney pain? Could it be a water infection? Sometimes we can have that without any other symptoms like burning when we pee, temperature etc. Have you tried drinking more water to see if it helps? I’m only trying to make suggestions so forgive me if you’ve already tried these.
Vodka it must be very difficult for you with your Mum dying of bc. How long ago was that? I’ve also had the breathing test for lung capacity last year because I was coughing and was breathless for months, thankfully it turned out to be reflux so I’ve been on medication for this and it seems to have stopped the coughing.
Has anyone been watching Married, Single, Other? I was in pieces last night as one of the girls was making memory boxes for her family, it was really sad.
Divvy, Heather, Mags and everyone how are you all?
Love P xx
Hi Peacock
So glad that your back problem is a disc problem, was thinking about you today. It’s hard not to worry that ‘it’s back’ with every little ache or pain. But anyway i’m sitting here smiling for you.
My mum died of secondry bc 17 years in September. She died 3 weeks after the birth of my daughter. no-one told me how ill she was, (probably because i was pregnant)i still remember the phone call that day.
you said about you having reflux. apart from the cough and breathlesness, i’m also coughing up phlem from time to time.
Any suggestion?
Hope everyone else is good today.
xx
HI Ladies
I confess to a small smile when reading, peacock, that your back pain is ‘only’ a disc problem, I’m sure we all think exactly like you, I know I do and am relieved for you that it is not a spread of bc.
Vodka - what’s your bcn’s attitude to your pains and the phlegm producing cough? If the phlegm is yellow or green you might have an infection.
I haven’t seen anyone about my kidneys hurting. Historically I’ve had lots of bladder infections, but this is behaving well now. Come to think of it, I’ve been coughing since half term (mid Feb) so that’s over a month now and I haven’t shaken it off, so I probably should go and see my GP. Last time I saw her she made a comment about me not having my ‘lovely long hair’ - to which I replied that I’d had chemo only a year before that! So I don’t have great confidence in her at the moment.
Sending hugs and wishing everyone a pain free evening and restful night. Oh to not feel tired in the morning!
Kinden
x
Oops, chemo brain strikes again, meant to say that I did watch Married Single Other last night, with tears rolling down my cheeks. And when she got taken into the back of the ambulance at the end… I’m not usually given to tears, but my goodness that had an effect given my situation
Kinden
xx
Vodka, I agree with Kinden, if you’re phlegm is coloured then it could be an infection. I was constantly coughing, especially at night but it never produced any phlegm, just a fractured rib LOL! This I didn’t know about until the CT scan and wondered why my ribs hurt all the time. I was also breathless, and after having heart checks which were all fine, was told it was because my legs weren’t strong so I needed to walk more to build them up. I did also have horrible acidy regurgitation especially when bending forwards. I also have slight lung damage which is down to rads, but not enough to significantly affect my breathing, but it won’t repair itself they told me.
Hope my symptoms help if they are anyway like yours, to reassure you.
I’m watching all the hunks tonight, Joseph in Holby, then the vampires in Vampire Diaries. Well we’ve got to have something to take our minds off the aches and pains haven’t we girlies.
Hello Peacock
Just want to say ‘great’ news on your disc problem, that must be a big relief, as we have all said on here any niggling symptom we start to worry if its mets of any kind but it is wonderful news then to be told no its only … (anything else please!!)
I must admit Im having one of my better days today but have started another diet today to try and shift some of this awful weight that was suppoosed to ‘fall off me’ when I got cancer (if its going to fall off me its taking its bloody time ha ha).
Well I do hope everyone is having a good day today.
Take care Deb xx
Acid reflux can definitely cause a cough. I had it when I was pregnant and had to sleep propped up.
Ann x
Hi Deb - thanks for your wishes, hope your week continues to improve and your diet goes to plan. Funnily enough I saw on TV yesterday that they reckon people who don’t sleep well seem to gain weight too.
Ann - hope your ok
And everyone else xx
Good morning ladies, I did post last night about Fibromyalgia but it disappeared.So this morning I’ve read your posts and think I have that, I have that, I have that, I am a disaster waiting to happen. I will tell you my diagnosed complaints then you will know what I mean, these were all diagnosed before the BC.
I have Fibromyalgia, arthritus in my knees, hips wrists,2 discs at the bottom of my spine are crumbled away ( know what pain your in peacock) and I have gall stones. I think thats it at the minute, but I did go to have my eyes tested and the optician found something wrong so I ended up going to see a consultant at the hospital. He said I have a ulcer or something at the back of my eye, and I have to go back in a couple of months. I promise now not to mention them again lol I hate it when doctors say to me any more problems we should know about, I know there getting board by the time I get to the end of the lists lol. Do you know its that bad, hubby has them all written down incase I am ill and he has to tell a doctor or somebody what illnesses I have, he cant remember them all lol. But I must say all these other things I have are not a problem compared to BC.
I do get fed up though because I am tired all the time, I dont know if anybody else does this, but I can just fall asleep sitting up. Its not like a normal tiredness were you can feel yourself getting tired if youve had a busy day etc, this just hits me like extreme exhaustion and I have to sleep, it does scare me a little.
Well ladies I hope you all have a good day, and anyone waiting for test results I hope there good ones
Heather
xxxxxxxxx
Hi Everyone, Just been reading all your posts. I’m new to the site and just thought I’d like to agree with everyone regarding the aches and pains. I’m hopeless with most pain killers, they make me feel sick and dizzy so I’m trying to battle through with just paracetamol and ibuprofen. I have secondary breast cancer in my liver and spine and I’m having weekly treatments of taxotere. Had my 5th one yesterday and seem to be ok today. I also have great difficulty sleeping after taking the steroids. I decided to take them early last night about 6.30 instead of the usual 10.00 and I did manage about 5 hours sleep. (I’m usually pacing round at 2.00) in the morning. I was given a tip last week but don’t know how effective it will be as I haven’t tried it yet. I was told to take a bit of Cider Vinegar mixed with a bit of honey 4 times a day for the joint pain. Apparently, it works wonders so I might try it for a couple of days and see how it goes. I had awful pain last week in my left shoulder blade which lasted for days and you immediately think that it’s the cancver which has spread! This is such a lovely site, it’s so helpful to see everyone else’s experiences and know that you’re not alone. It’s 18 years since I had the original bc and I really thought I had it beaten. Anyway, hope you are all fit and feeling good today. Lotsa love, Dianne x x
Hi Vodka and all other fellow sufferers
I could have written your letter. I had mx and full lymph gland clearance in Dec2006/Jan 2007 and 8 sessions of epi/cmf. I am now on Tamoxifen. The most major side effect is knee pain it niggles away constantly but in the last few weeks its went from mild/moderate pain to agony. I was sent for an x ray but it came back with only showing mild osteo arthritis and the dr said painkillers were the answers and the inflammation should die down. A week later still on painkillers there is no difference. It is quite depressing I have went from walking 2 0r 3 miles daily to hardly managing a short walk. Is this what I have to do . Like you I sometime feel I should have left well alone and I wouldn’t feel so bad now. Sorry for the moaning.
Take care all
Carolyn x
Hi all,
I just came across this thread about fibromyalgia and just thought I’d let you know about my experience.
It’s been 10 years now since bc and I am absolutely sure that my fibromyalgia is due to my chemo. As soon as I got it, I was in tears some days unable to do anything and with lack of sleep I just got so fed up with the doctors pushing whatever drug they wanted to give me, I had been back to my doctors so many times so frustrated and told her this wasn’t working so did try these first.
I then started on the alternate route and I know that with the amount of tablets plus treatment that you are all on, it’s really difficult to think ‘not more tablets’ but I found and even to this day that my fibromyalgia is better managed.
I won’t say this is a miracle cure because I tended to find it’s all trial and error but found this worked better than the normal painkillers and I tend to be better in the summer and obviously start september time for the winter which for some reason kicks off my fibromyalgia, must be the dampness.
I alternated between magnesium and cider vinegar but including stretching exercises whilst sitting on the couch just for 10 mins and only if my pain wasn’t so bad (neck, shoulders, ankle, knees). Your body flipping well lets you know what you can and cannot do.
I was on magnesium chloride tablets - be careful when buying as some of the other tablets advertised are coated and so don’t easily absorb into your system (NOT OXIDE/CITRATE as acts as a laxative)- so look for good health shops like Holland and Barrett, I took a dose morning and evening but now only once a day before the winter where I feel it more. Works well with calcium, which i took tablets for as I had cut down on dairy products, tea and coffee. A friend had told me about it as her immune system was very low and it helped her.
Also the cider vinegar, honey and water does work ok but I found my breath smelt but it worked to ease it better. Just be careful the type you buy is really important, the cider vinegar needs to be organic where the ‘mother’ sediment is in it, try and get a raw honey too and with 2 teaspoons of each, put it in a 8oz cup of hot water - 3 times a day probably would be the times if you can do it - obviously does not taste very nice! Oh also I used bottled water as the chemical treatments in tap water I had heard somewhere can counteract this.
The other main thing that helps now is exercise - but you cna only do what you can and I do know what it was like being exhausted all the time. Even a little bit whilst watching the Soaps if you can at all manage it!
Anyway I just thought if you are wanting to try something this may help.
Jan x