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Bone mets - please join in

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Re: Bone mets - please join in

Hi everyone, Tracey just fantastic news. So pleased about you getting your pip. Have you got the enhanced level do you know for both categories? I got given my ds1500 last week but the dr hasn't filled it in properly so going back next week. What a pain - different dr so fingers crossed he signs it.

The button to press re seeing all the conversations - just under the box where we type our reply in pink on the left hand side it says - view discussion in a pop up - if you click this it will open a second page alongside this one. Then you can just click the page to that one and this one so you can see what everybody has written without writing it all down. Thus my long posts now. Hope that helps.

Helen, so pleased everything went to plan - love the post about pirates - I just couldn't do it so wore simple hats with ribbons on etc to jazz it up a bit. Pleased that your sister at least has a plan - I find things begin to settle once you know but the chemo I'm sure she is dreading. I hope her surgeon is going to write a letter of complaint. Surely they'd take note of that? I did chuckle - basil fawlty at fawlty towers. Some things just hit the spot don't they - no more needs to be said.

I painted my finger nails during chemo - usually a rich dark purple and I have to say this time my nails weren't half as bad as the first time I was on chemo and didn't paint them. They are still breaking and cracking but not half as ugly with dead nails and horrible brownish colour underneath. So would recommend. They also ridged quite badly - one for each chemo as the nails stop growing for a bit each time. I'm on my last few ridges now so nearly all gone. Also I didn't lose any toenails this time when painted - which was a bonus.

Ladies - huge hugs to everyone.

Hxxxxx
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Well done Tracy for getting PIP - I agree that I think everybody with SBC should get it automatically - would stop lots of worrying for people dealing with enough stress as it is.I do hope everybody else is coping with the ups and downs of this horrible disease. I dont know how to scroll down all the posts to reply individually - think I will have to start the old fashioned way and write them all down!xx

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PS,Tracy I read on here somewhere painting fingers and toe nails a dark nail varnish colour stops nails going a funny colour. Crystallised ginger is great for sickness too,if you like it( I do)
Also benefit BROWzing is recommended for brows. The light brown is great for blondes as it's not gingery . ( if you are blonde)
Xxxxxxxxxx
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Tracy,FANTASTIC,so glad you are going to get PIPs .it should be automatic for everyone with SBC. You certainly don't want to be going into work with germy people. Good on you,yippeeeee.Tracy you sooooo deserve it,you go girl.
Huge hugs ,Helen xxxxxxxxxxxxx
Yes,the Anna bandana is really inexpensive too,which is a great help. One site had £50 cashmere ones on,really!!! I'll have half a dozen lol xxxxxx
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Great news about the PIP Tracy! Not before time eh?
Love bev xxx
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Thanks for that Sara I've got a sweet tooth usually so maybe il go the opposite and il stock on the biccies!

Tracy xxx
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Thanks for the links Helen there are some lovely bandanas on there and winter hats, I like hats as well so that's a bonus. Hope you feel okay after your rads today. Xxx
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Well Ladies I can't quite believe it but it looks like I will get PIP! Back in April GP and BCN refused to do ds1500. I spoke to BCN this morning and expressed my concern over trying to work whilst on chemo as my employers run a sickness bonus whereby if you don't take time off and go in when you are Il you get a bonus which results in everyone taking their germs into work with them. She suggested applying for a one off grant from Macmillan to help with travel costs ect. So I did this and the Macmillan lady asked if I had applied for pip, l said I was refused fast track but was waiting to hear from general application. Well she went off got the Chemo specialist nurse to sign it and bingo! She said I can expect it in approx 2/3weeks! Still can't believe it I've never claimed anything even as a single parent. Now I won't have to worry about dragging myself into work and risking infection. Love and hugs to everyone! 😃 I feel so relieved!

Chocolates what is it you press to check previous posts whilst typing?

Xxxxxx
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Hi,ladies,I was a different hospital for rads Fawlty towers don't have a rads machine( probably not allowed as they'll brake it lol) must say I'm glad as terrified to go back to FT after my outburst . But have appointment on Tuesday to see GP and talk about getting away from there and the lovely juileD (AKA Sherlock Holmes ) has been doing some research for me on health trusts xxxxxx
My rads are done in Newcastle health trust and Basil Fawlty AKA my onc come from there so I don't know why my GP said I'll have to start all over again. If only lol that was true.

Well my lovely sister is grade 3 and is going on chemo before mastectomy. Her surgeon said he just can't believe how Fawlty towers missed her cancer!!! That hospital wants bulldozing and whoever checks mammograms sacked.

I've told her we can both be pirates together with head scarves ! I've been practising this afternoon and I still look like mad pirate!!
Well my wonderful ,brave cyber friends have a good evening,( chocolate it's sunny and I've not put my parasol out xx)
Massive hugs to to you all,Helen xxxx

P.s thank you Lucy bcc for link. Xxx
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Sara - good to hear from you. I thought you might be reading the posts. I hope you didn't feel pressured into posting - I only work part time and exhausted so it must be really hard full time. You seem in a much better place emotionally thank goodness. Remember whatever you decide we're all here for you. You're always in our thoughts. xxxx

Janette you need to click on the live chat button and register again even though you're registered for the forum. Most of us use the same details as it's easier. Then on the Tuesday night you just click the chat live button and you're on. We had another newbie last night and people either just watch the thread through of join in as they feel able to. It's lovely just to chat in real time and not always cancer related. When you're ready give it a go. You're be made very welcome.

Nervously waiting for Helen to report back that all is well. You just don't know with fawlty towers.

Much love ladies xxxx
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Thought it did not look right...Tumour markers rose from 70 - 133
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Good luck with FEC Tracy, I had 6 sessions and tolerated it reasonably well. My taste in food and drink went the complete opposite, I loved savoury food but I suddenly went crazy over fresh cream cakes and sweet stuff. Ginger Nuts were a god saver for me to ease the sick feeling, I would have a couple with my breakfast cuppa before I got out of bed and that helped. I cannot think of anything else at the moment but if there is anything you want to ask me feel free. Lots of hugs Sara xxxxxx
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Morning everyone and Helen good luck for today...try to go in smiling, but not apologetic!!!!!!..I know just what you mean about computers, I just typed this out once and lost it all....trust it to be a long post as well. 

 

Natalie1 and Faraway -  when I was first daignosed my tumour markers were 416 - that was about 20 months ago.  The nurse told me on the phone about them because they dropped when I had my next blood test.  She told me that they could be a good indication but didn't seem to work for everyone, I was worried because it seemed such a high number but she told me that she knew ladies who were up in their 1000s and more who were doing okay.  She said that the general trend was more important than the numbers and even if they went up it wouldn't overly concern them unless it was a dramatic increase.   Having said that I am no expert and we do all seem to be told different things.

 

JulieD - it is interesting what you say about feeling a bit more achey just before your Zometa because i think that I do.  I always thought it was because I needed a 'top up'......however when I last saw the ONC he said that they were considering reducing my infusion to once every 3 months - when I asked if it would still work as well he said that it -'stays around in the bones for a long time'-      PAM01 gave me some information that she'd discovered (posted on here 18/6/14) so I am going to see him in Sept with a list of questions and I think that I will mention the pre infusion aches as well.  Do you have your infusion every 4 weeks?

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Morning All, I am reading the posts but I work full time (should be working now but....) and when I finish for the day I feel so tired sometimes I can not even eat, will try harder to post more on here. My problems are tiny compared to most on here and that has given me a shove in the right direction. My last CT scan was stable but tumour markers rose from 120 - 133 in 3mths. First page of Onc letter says 'its good to be able to reassure you that everything is under control at the present time' second page says 'her cancer is slowly progressing but she remains asymptomatic from cancer at present' so not sure whats really going on. Had blood test for calcium for Denosumab on Mon and added tumour marker tests in box! Probably get told off but I want to know whats going on! Got another scan in 3mths so at least they are keeping a close eye on me. I am not going to worry about what the next treatment will be until the time comes. Must admit Notts City are good when you know how to work round the system! Really pleased the weather has cooled down! Love to everyone Smiley Very Happy xxxxxx
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Meant ...and 83 last time...
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Hi natalie. Im sitting waiting to see onc as we speak!
About markers...I was told mine were 83 at first appt and 83. That seems a low figure? Wonder what they are now? xxxx
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Morning ladies,

Wow lots to to read this morning!!!

Helen good luck today today hope you have a better day than Monday, i dont think anyone will mess with you today lol xx

Hi Shelia, aww sorry to hear that you have been in hospital but at least they got you sorted and it wasnt related to the dreaded disease!! xx

Hi Faraway, like Chocolates i to have been wondering how you are getting on, hope your ok and if you are reading the forum please let us know how are xx

HI to Chocolates, Bev, H, and anyone else i have missed out on, I have never been on the live chat on a Tues evening,would like to but feel a bit nervous about it!! what do i need to do??

Been reading on some of your posts about tumour markers being in the hundreds, mine were in the two thousand range....yikes!!! have now dropped to the one thousand range, i have never asked my Onc about good and bad ranges or about the size ect of my mets as i am afraid to if you can understand that?? ignorance is bliss and all that.

Hope you all have a lovely day love and hugs Janette xxxxxxxxx

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Tracy,I watched the video they have on here ( think that's on Vita link)about putting eyelashes & eyebrows on which is fab. I did have a go as don't wear eye liner and looked omg scary! And having blonde eyebrows well let's just say I'd scare small children with my attempt lol. Check it out it's really good. Even shows you how to tie scarf.
Please,BCC can you put link in again.xxxx
God I'm useless at computers !sorry or I would do it,hats off to people that can xxxxx
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Thank you Lucy BCC xxxx
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Oh roxy good to hear you are feeling better now, how scary.
I used Buffs when I lost my hair, just made everything so easy. I used to just tuck the back in and you can add another contrasting one on top, just like a band, an edge which also gives added height but often I didn't bother.
Boast alert...it was at this point I discovered I had a round little head. All my baby pictures looked completely different!? :-) x
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Hi Helen/Desi
Here's the link to headwear suppliers:

https://www.breastcancercare.org.uk/breast-cancer-services/talks-courses-local-support/hair-loss-adv...

Best wishes
Lucy BCC
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Google morning lovely ladies,
Oh Shiela,so sorry you have been ill but thank god it's not cancer related which always springs in your mind. You rest up and take care xxxxxxxxxxxxxx

Tracy yes,it's a website BCC has listed for hair loss gear not sure what I clicked ,it was under suppliers and a list came up (and very cheap prices.) xxxxxxxxxxx

Good luck every one ,huge hugs and stay strong,Helen xxxx

BCC,can you put a link thing to the headwear suppliers for Desi as I don't know how to do it please xxxxx thank you.
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Hi Chocolates, I'm not worried by marker rise, I fully trust my lovely onc. My appt was near end of clinc & was only 45mins late but this is because he gives you time. Showing me CT scan etc. Good news is that the blocked lymph glands under left arm are now clear, probably been that way for sometime but kept forgetting to ask!! He checked through the scan. If I begin to feel unwell then to ring & make earlier appt. I am a happy bunny!! Moneck

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Hi chocolates. I used my daughters laptop last week to log in to live chat as I cant get on it with my Samsung tablet. But she went out tonight before giving me her password to unlock it! Sorry to have missed it 😕
Nice to read everyones posts on here tonight.
Take care...love bev xxx
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Oh Sheila, what a rotten time you've had. Sounds very frightening but thank god not cancer related. You rest up now and hopefully by the weekend you'll be feeling a lot better. Was good to hear from you though - I was about to pm you as not heard anything and I knew you weren't away. Look forward to hearing from you again when you feel better.

Tracey - I have no experience of FEC so can't help there. However, I hope having a new treatment plan in place is a bit more reassuring. Like you say - the thought of chemo is awful - I've done two lots now - it's not nice but it's brought me extra time so I'm grateful. Unfortunately our treatments seem to be determined by having a chemo before being allowed access to others. Doesn't seem right to me - why can't we just have the one that best suits our needs at that time. Money has a lot to answer for and the stupid drugs fund. Just a lottery isn't it. Anyway, sorry for my rant, I'm thinking of you Tracey. You're quite right to go away - you will feel in a much better place to cope with the treatments. I used the bandana head wear - it's cheap and chic and worked for me. Would recommend it. Huge hugs to you - we're all here xxx

Janette - sorry can't help re injection site and itching. I have denansomab and apart from the fact I find the injection really, really painful I don't have any other side effects from the injection site. Like the other ladies said I would mention it at your next appt. xxxx

Moneck you were missed tonight but hope you had a good time. Sorry to hear about your markers. A chemo break is nice and I'm sure your onc knows what he is doing. I think I'd be getting more anxious though as they continue to rise without treatment. How do you feel about it? Good news kidneys ok so far. Enjoy yiur break to the Lake District. Hood you manage to have a good time. xxx

Bev - missed you tonight on chat. Wasn't quite as heavy as last week. Hopefully you'll join us again soon. Hope you're keeping well? xxx

Steph - hope you have a lovely holiday and enjoy rest and relaxation.

Faraway - if you're keeping up with us how are you doing? Have you made any decisions about treatments yet? Would be lovely to hear from you.

Mavis - I'm sure you're reading - hood you're doing ok. Thinking of you xx

Helen - good luck tomorrow - please let there be no problems. If not - then shout loudly and tell everyone how rubbish they all are. Please note I've been restrained with my language Helen - don't want a note from the moderators!!!!!

Hi to everyone else. Dani if yikes reading ill pm you soon. Hope you're ok too. Missing our messages.

Huge hugs everyone,
Hxxx

PS - please blame dawn (I think) for my now much longer messages - it was dawn who told me to click the button which shows the whole conversation. I have to use it to make sure I don't miss anyone out!!!
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Hi Desi-2, Sorry to hear you have been so poorly. At my hospital we are told that if you go to A&E tell them immediately that you are a cancer patient. Anyone starting chemo is given a small card to go in your wallet to alert staff.

Thankyou for good wishes, hey I feel so much better than I did last year when I had fatigue for 3 months prior to the Secondary diagnosis. Helped by friends who keep telling me I look well & happy. I will be joining the support team for a Walking Pilgrimage who are enroute from Liverpool to Carlisle, I'll be in a car!! We have never done that part of North West England, next year back to Surrey & Sussex. I look forward to my 'New Zealand' hugs as Howard says I have 7 days worth to catch up on.

  I had a massive intestinal bleed back in 1980's - I had been on daily ibuprofen for over 4 years for a neck condition & my intestine had got spongy & leaked. On emergency admission my red blood count was 4.5 & they couldn't understand how I was still 'with-it'. Not had them or aspirin since, & have to check cold / flu remedies. Gentle hugs, Moneck

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Hi Monica sorry to read of your problems at the moment but hope you enjoy your hol in the Lake District I absolutely love it there and hope to go back next April maybe. Been a couple of times and stayed in Rusland Valley. Soo much more of it to see. Xxx
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Whoops. Not got brain functioning right yet. After queezy it should say very tired and weak. Xxx

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I'm sorry I missed livechat I was at a birthday tea - not mine!

Helen hopefully you have alerted the staff at your hospital to take notice of you. If you have to return to that section just smile at them, it will un-nerve them. 

Someone from where I used to work made it obvious that she didn't like me, so whenever we met I smiled at her & it confused & annoyed her!!! Not everyone was aware that she was my older sister (5yrs). She has ignored me since I got this diagnosis last year, as we say it is her problem not mine.

 

I posted in the 'Peritoneal' thread that I saw Onc. yesterday & markers have risen from 600 to 894 but he says that we need to see how quickly they will go up & so still staying off Cape until end Sept - that will be 22 weeks 'chemo holiday'. The enlarging abdomen is not much of fluid but due to fibrous tissue or as I say ' an extra boob in my abdomen'. The kidneys are working ok - confirmed by CT scan but could in time be compromised by the extra tissue. I am off to the Lake District on Saturday for a week with friends & perhaps a few days with my twin sister on the way back. She is very supportive & comes from London for each Onc appt - she takes notes & prompts me if I've forgotten any of the questions I have on the notepad.

Hope you all have great holidays or even if not away treat yourself to a day out, meal out etc.

Monica xxx

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Hello everyone.

 Been in hospital for 4days and just glanced at a couple of threads as not got energy to read them all yet. Luckily have just read yours Helen about your rant and it made me laugh!!! He deserves to have heard you. Well done!

I'll tell you all what happened and try to keep it brief. Have been feeling off for a couple of weeks, queezy and very veomaprazol. Well Friday evening, I vomited a large amount of coffee grained vomit with fresh blood. It was about 8_30pm and I knew I should go to A and E but didn't want to go because I knew it would be rowdy so I rang the hot line nurses at Christie and she said she could understand me but would I go if there was anymore and would I ring her in the morning and let her know how I was. I did ring and I did go to A and E on Saturday.

Sorry this is going on a bit! Anyway I was admitted and they said they thought it was a gastric bleed caused by nsaid pain killers. Had a camera down Monday and this confirmed it. Just wanted to tell you because we always think anything bad must be due to the cancer and this was totally unrelated thank God.

I never have to to take ibuprofen again and am on omaprazole to heal the inflamed areas. Also had a unit of blood. Still tired but no queezyness. 

I have to say the nurses were absolutely fantastic. And the consultant. Even the Dr who did the gastroscopy came up to my ward later and explained everything to me!

It gave me faith in our NHS after Helen's disgusting treatment. Sorry if I have waffled on a bit but hope it helps if anyone gets any bad symptoms, get them checked out cos its not always the horrible disease.

Take care all of you. I'm going now before this becomes a book!!

 

 

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Hi Bev I've only had letrozole and tamoxifen so far no chemo with primary either that's another reason I have to have it now before they will consider oral form. I did ask about trials for targeted therapys but was told no one would consider it without having had this as a first line treatment so fingers crossed it works well. Xx
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Thanks Helen is Anna Bandana the name of the website? I'll have a look. He said they wait 4 to 6 weeks from surgery and then it's my holiday week so he would have started it after 4 but but said go have my hol without feeling poorly. I do feel like I may have further spread in my spine some new aches so I think it is time the letrozol obviously isn't doing anything. I'm hoping with 5weeks free of that I might be that bit stronger to cope with it. I'm having a bone scan as soon as poss so that will show if anything more pressing and if he advised it I would cancel my holiday, but hope not. Xxx
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Hi Tracy, sorry to hear you have chemo looming, you go and enjoy your holiday to the Cotswolds and relax :-)
love and hugs Janette x x x
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Have a lovely holiday Tracy and come back fighting fit to start fec. I had it 9 yrs ago for my primary. They put me on Cape as a first line treatment in may but did mention taxotere as well . I chose cape because I wanted to carry on working 2 days a week. Hope I made the right decision now ..!
I did ask my bc nurse yesterday if there were other oral chemos after cape and she said there were lots with others on the horizon.
I felt reassured by this but I've heard of other Oncs saying they like to keep the oral for later.
What have you had up till now?
Love and hugs. ..Bev xxxxx
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Hi,Tracy,I can cyber hug you,but can't give you any advice. glad you are calm about it. I know what you mean about it hanging over your head knowing it's coming .I just ordered some cap /scarf things from a website recommended by Bcc Anna bandana . Thought I'd get used to the head covers.
It seems a while to start the 18th,did he tell you why the wait,I'm just curious as I know nothing about chemo.
So glad you have your holiday first in such a beautiful part of the country.
Massive hugs Tracy ,stay strong ,Helen xxxxxx
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Well ladies I am to start Fec chemo x6 on 18th Sept. Feel quite calm about it at the moment,,it seems to have been hanging over me like a threat for so long and now just have to face it hope it may give me some years stability. The onc said this was possible but we all know there are no guarantees, so I'm hanging on to that thought and hopefully that will get me through. His reason for that and not Cap is to do his while I'm still strong and save the others for later. Any tips welcome, foods to aviod or anything like that.

Good luck with rads Helen and at least I get my week in the Cotswolds the week before i start. Hope everyone has had a good day and and thank you for your good wishes.

Love to all Tracy xxx
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Thank you Helen and Steph for your replies to the zoladex, its no big problem just an uncomfortable itch and was just curious as to whether or not anyone else had the same.
Good luck Helen with your rads love.
Steph hope you have a lovely trip to France let us know how it goes, France is on my hit list would love to go there.
love an hugs Janette x x
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Good luck with rads Helen xxxx
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Hi,steph,that's fantastic ,I hope you have a wonderful time in France . Thank you,I've just packed my bag with my strange Velcro dress they give you,bottle of water and E45 cream so I'm all set,bring it on,yikes!
Let us all know how your fab holiday goes when you get back,huge hugs,Helen xxxx
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Hi Helen, I actually think that your out burst was quite restrained given all that you have had to put up with. I hope that the staff at your hospital sit up and take note! 

Just wanted to say that I hope all goes well with your radiotherapy. Fantastic that you have your holiday to look forward to once rads are completed. We are off to France on Friday - can't wait! Love Steph x

 

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Hi Janette, I don't have zoladex, but I now have herceptin by sub cut injection and it does sting after the injection has been given and intermittently for a few days afterwards.  I understand that this is common and nothing to be concerned about unless the injection site is red and inflammed ,although it may be a little uncomfortable. I guess that the principle is the same for any drug administered by injection. Love Steph xx 

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Hi,janette,sorry,that's one SE I don't get,I'd ask next time you on ward though.
Huge hugs,Helen xxx
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Hi ladies, just a quick question, i have just had my 4th zoladex injection and for about a week later its really itchy and stingy where they inject it does anyone get this???
thanks love Janette x x
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Good morning, ooh, I meanafternoon but not dressed yet so feels like morning!
Helen, try not to feel embarassed, I think you did extremely well to hold off giving them a blasting for so long. Hope you get a referal to different hospital quickly.
Tracy hope Onc appt goes well and you have psitive news, holding your hand.
Chocolates, see you on Chat tonight, we'll catch up then.
Lynnq, I often find my aches and pains are worse for a few days before zometa due. I can't lay on my side for more than a few minutes so have to sleep on back which is a blow as I'm naturally a side sleeper, I know what you mean about painful spine, I find if I can lay for a while slightly to the side of one buttock if you see what I mean it eases it a bit to then go back flat.
Mix of sun and rain here in Sussex today. Meant to be trying my hand at some gluten free cupcakes so better go and get dressed!
Have as good a day as possible, lots of love xx
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Hi Lynn, yes there is no fat to cushion that area is there? When I was first diagnosed I had to have my hip replaced, was broken due to mets and the District Nurse brought an inflatable mattress round which was noisy but quite comfy. Because of the replacement I sleep on my side with a small cushion between my knees, sort of helps my lower back too.
Have fun on the days with your young grandaughter. :-)
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Hi,Lynn, so sorry you were down yesterday,lack of sleep as do that. I'm glad you are more yourself today. I'm exactly the same. It's anywhere on spine that touches aches. I'm like you can't sleep with it sometimes. I also find turning over a problem but I got a rail that fits under mattress and acts as lever to help me hang on and turn.found this a great help.
I don't blame you not giving up looking after grand daughter she must be a little ray of sunshine xxxx
Not long for mickey,I'm counting days down for you lol.
Huge mickey hugs,Helen xxxxx
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Good morning everyone. I read your posts every morning, but only contribute now and then. I just wanted to tell you all that your banter has really cheered me today. Was feeling a bit 'down' yesterday but I knew that it was mainly tiredness. My achey bits always ache more when I am tired and i am not a good sleeper. On Monday I am up at 0530 because I look after my 3 year old GD for my daughter who works.....only one day a week but i love it and when daughter asked if it was too much for me these days I told her no way.....rather spend Tuesday resting than give up that one day. Any way had good sleep last night and then reading your cheery posts was good so feeling much better.

I do find that I ache in bed where my lower spine & back touches the mattress, if you see what I mean. I guess this is pressure on the mets there. It does tend to go away a lot when I am up and moving about. I can walk with few probs but standing and getting up after sitting for some time I struggle. I am sure this is the same as all pelvic mets ladies????

Off for my zometa today .....
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Lol Belinda ,yes,I did feel like I'd been summoned to heads office for telling off. I'll sit on naughty step ,thanks for cushion,tea & crisps Smiley Happy hee hee xxxxxxx
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Hi all, perhaps up to and including 50 would have been a better cut off point? The usual age to have your first mammogram?
I was diagnosed with secondaries in my early 40's.
Helen hope the naughty step is comfy. :-) Just in case passes cushion, crisps and a nice mug of tea. :-) x