It is comforting to see this thread back here again, it is a memory of Mary!
I too have been wondering how Louise is doing, if you are reading this Louise i hope that you are comfortable and enjoying as much as you can - stay strong and let us know how you are doing xx
Julie I think that I missed the news about your being stable - that is fantastic, encouraging news! I am still trying to get my xeloda, but keep having to have it deferred, because my bloods are too low! They are talking about giving me a blood transfusion then going ahead this week!
Love to everybody else and hope this lovely autumnal sunshine is lifting everybody's spirits and nobody is feeling low! Xxx
Well, been missing Mary terribly and have taken a while to start getting back to coping mode but am getting there. Just wanted to see how everyone else is doing?
Louise, how are you getting on? Are you still managing to get out in whheelchair, how is the pain relief working? Are you still enjoying your food? ....... Think of you often and hope you are taking enjoyment whenever you can xx
My last scan results were good, no change from previous one which in met land is good news.
Hope everyone doing as well as possible, wishing you all a painfree, comfortable, peaceful weekend,
Hi Ladies, I am so so sad to hear the news about Marychris. She started this thread a long time ago and has given advice, and lots of hugs to everyone on it, including me.
My thoughts are with all her family and friends. Sleep well lovely lady.
Sue sorry you are having a bad day. When we lose someone on here it fairly brings me back to reality quickly. As we say up here " Lang may your lum reek". May you live to a ripe old age. Hug to you Sue and hope the day improves for you. Think of you often. Love Val
Desperately sad about MaryChris. So sorry to hear of this happening and so suddenly.
Can't say much more as not feeling too great myself today. I am sure it will pass.
Hugs to all Sue xx
I was so sad to read this morning about Mary. I will miss her posts very much. Perhaps it is just as well we don't know what is round the corner. But I hope that if I go it will be quick and not cause my friends or family more pain. My condolences to her lovely family. I never met Mary but I felt a closeness and understanding that only people in a similar situation can fully understand. You will be sorely missed Mary. Val
All my moaning and I never realised she was quite so poorly.
Love to all who are struggling and especially those who find the strength to continue to offer support to the rest of us
So very sad to read about Mary.
Really very shocked!
Sending out special concerns to everyone on this thread as it will weigh heavily with you all.
Tight hugs to you all.
Welsh girl xx
Louise, I'm so glad your pain is being managed.
So lovely to read your news, thank you for finding the energy to write here.
Tight hugs for a peaceful night and a good start to the week.
Bestest wishes to you from Welsh girl xx
Thank you so much for finding the energy to come and let us know how you are and how things are going, you are often in my thoughts and it's good to hear from you. Yep, I'm with the others - eat as much icecream as you want without making yourself sick!!
On a sad note, I don't know anyone has noticed the in Memory post for Mary Marriage? That is our Marychris. She had ben having a few problems but I wasn't expecting things to progress so quickly. Sadly Mary died yesterday. She was a lovely, kind, caring woman and I will really miss her as I'm sure will lots of you on this thread. Rest in peace dear Mary xx
Louise - glad to hear your pain is being managed well and that you are managing to enjoy the good times for the most part. Have plenty of ice-cream in your favourite flavours! Sending you hugs and strength. Liz x
Louise, Good to hear from you but sorry that you are so tired. I know the feeling as I am still in my PJs and spend more time in bed than out of it. It seems such a waste of time when you could be doing nicer things. Thank you for your honesty and we really do miss your posts. A huge but gentle hug coming to you. Love Val
Hi all thanks for kind thoughts.
Of all the things they tell you about end stage bc, they forget about the most over riding fatigue!
I am at home but struggling with more or less paralysed legs,Pain is being managed well, have enormous appetite and NO weight gain so making the most of it with ice cream etc. Belly huge - any want to adopt triplets?.
Trying very hard to enjoy the good days or more like a few hours each day before I crawl back into bed.
Look after yourselves and hopefully a short but warm Indian summer
Louise it is so good to hear you have been able to get around a bit in your wheelchair, it is very important to get outside the four walls!! I am sure your lovely husband ,and friends and family,are looking after you very well, and I don’t think you need to worry, they know your wishes, and they will do all in their power to see that they are carried out. It is a beautiful day,so I am hoping that you are getting some of the same.Love and hugs xxxxxx
Val Hope all goes well on Monday, I know it is very frightening,but your team seem to be on top of things,and just think,this time next week,the op will be all over, and hopefully you will be feeling much better, I will be thinking of you,stay strong,love and hugs xxxxxx
Love and hugs to you Sarah,will catch up on FB xx
I have had a pretty rough time this last fortnight,when I went for my Zometa two weeks ago,had a word with the doc, and told her of the terrible ache,in my left ribs,she prescribed Oramorph!! She thought it was more progression , that really frightened me, well I thought there is no way,will I take it, but you know when you get that tumour flare from the Zometa,well it kicked in the next day!!! I was defo glad I had the morph, since then have been in a fog of pain,thankfully today, i am coming out of it a bit Phew!!!
Well ladies you are all very much in my thoughts,enjoy the weekend,love and hugs Mary xxx
By the way, I PM’d Wayne, and Maryanne is doing very well,and they are going on holiday! great news! x
So glad to hear that you are able to get out and about with your friends, I'm sure it makes a big difference and must make the days much nicer. Looks like we might get some sun this weekend so hope you are able to enjoy it! Your Hubby sounds like a star! I'm sending you 2 hugs one for you and one for him for being so good.Don't overdo it but do have a good weekend!
love Julie xx
Hi Louise, I am glad that your friends are able to take you out and about in your wheelchair. I find I need to get out most days even for just a small while and makes the nights less long and as it is nice to come home again. I know what you mean about overdoing it. I spend a lot of my time in bed now as I find lying flat much more comfortable. I have been introduced a new painkiller that i put under my tongue if I have severe pain in my leg and I wish I had known about it sooner. Before I was using Oramorph for the severe episodes but now I have Fentanyl in my handbag and I just pop one under my tongue. It works quickly and unlikee Oramorph it wears off after an hour. Just thought I would tell you about it incase you haven't tried it yet. Much love, keep in touch with us. I love to hear how you are doing and it has cheered me up to hear that you have been out and about. Much love Val
thank you so much for you cyber hugs etc
am using wheel chir now which means freinds can take me out and about. Hospice are constantly reviewing pain meds to keep on top of things. I have mainly good days but if I over do it is is a diaster - I am tearful, frustrated and very wobbly. Hubby is a star though and doesn't complain is he iscooking a lovely meal that I have requested and by the time its ready all I want is cheese on toast. We tend these days to have a bigger meal at lunch these days.
have a good weekend all
Val hope things are getting sorted for you
Sorry you're feeling so troubled. What a nightmare for you!
Do take the time you need to ask all the questions you need today and hopefully that will not interfere with your weekend and you can feel more at ease.
You don't need any more angst...
Maybe others will come on and give your their advice/experiences too.
Special supportive hugs whizzing your way....
Welsh girl xx
More supportive hugs sent out to Louise too.
Thank you for letting us know how you are. I'm sure the symptoms sound very scary. Do hope your nearest and dearest are able to reassure you even more that your wishes are safe with them.
Best love being sent.
Hi Val, I am sending you a hug, and will be thinking of you, I hope you get some answers pretty soon and I am sure you will from the lovely ladies on here, love junieliz x
I don't blame you for not wanting to go to A & E - I will, and have, been telling my husband and family what I want as well. At home or in the Hospice definitely.
I wish you warmth, comfort, love and peace our/my snow angel.
PS. We are going to look for that b....y sun in Majorca on Sunday for a week. I got OH to give in 'graciously' to this rather than a week in Yorkshire in the camper van!!! Not much contest really.
Dear friends, Can you help me as I am feeling a bit scared....can you read my post on "Bone mets" thread, to save me writing it all out again. Your imput would be appreciated. Love Val
Thank you all so much for your thoughts, it gives me a lot encouragement. My main symptoms are legs that on some days feel completely numb and I'm dragging around 2 tree trunks. I am terrified of becoming incontinent. In terms of a team that understand my wishes,I made a 'living will' a while back and apart from making it clear about medical intervention i would or would not want in my final days, were VERY clear instructions tha un NO circumstances was I to be taken A&E as I fear that they would not release me to die in peace at home or ideally at the hospice I have been visiting.
I have told everyone, GP,district nurses, hospice, all family and friends etc but even so last week several of these people suggested I go as the hospital would be aboe to drain the built up fluid in my abdomen. I was really distressed by this as they know emphatically that that is a specific request and makes me worried that other wishes could be disregared so easily. OH and all family are awaarre of what I want and OH in particular feels that it takes an enormous pressure off his back regarding making what may be some very difficult decisions.
I strongly advise you all if/when your disease deteriorates to make sure you have good advocates.
Anyway I will try and keep you updated on this thread.
Have a lovely day where is that b****y sun?
More positive thoughts winging your way Snow Angel. I too have been thinking of you and am so pleased you have been able to manage your symptoms and get more comfortable.
You must feel better now knowing that you have a date to work towards. I will be thinking of you on the 5th and sending positive healing vibes your way.
To everyone else, yes, enjoy the rest of the BH weekend.
Good to hear from you, I think of you often so thanks for keeping us up to date. I'm pleased to hear that your symptoms have settled and that you now have a team that understand what you want. Do you manage to get around with the weakness in your legs? Pleased that you have little pain and hope that you remain as comfortable as possible for however long (indeed, who knows)and that you can enjoy whatever you choose to do. Hope you too have a god weekend,with love and hugs xx
SL, not long now! Hope you'll soon be back poting about how much more comfortable the op has made you! Good luck, wiil be thinking of you xx
Have a good weekend everyone, with love to all you lovely people xx
Louise, thank you so much for finding time to let us know how you are.
Really glad you have trust in your team.
I'm sure they will do their very best for you.
Do hope they can keep the pain to the minimum.
Hoping you enjoy this weekend too despite the loss of warmth.
Sending you a cosy hug!
Val sorry to read about your painful hip joints. Do hope op on the 5th goes well for you....
Not easy though waiting for an op!
My tightest hug to you both.
You are in my thoughts tonight.
Do hope everyone else reading is as ok as possible.
Louise sending you a hug, and hope you are comfortable, thinking about you, thanks for keeping in touch and letting us all know how you are, bless you love junieliz
Hi val thoughts will be with you good luck on the 5th, hope everything goes ok for you, hugs to you too, love junieliz
Louise I am so glad to read that your symptoms have settled down. Are you still at home are are you in hospital? I am glad too that you have a team who understand your wishes. I am off for an operation on the 5th to put pins in my hip/thigh as I have been having discomfort and difficulty in walking. But like you I have a great team looking after me so I am in good hands. Have a good week and if you are well enough please return and tell us how you are. Much love and a big hug from Val
how wonderful to hear from you, I have been thinking about you a lot.
I am pleased to hear that your symptoms are settling down and you aren't in too much pain.
Thank you for updating us and I wish you a great weekend too,
Stay strong, love and hugs xx
Despite some really low days symptoms seem to have settled down. Very little pain but complete weakness in legs. Look like I'm carrying triplets. Have had a few disagreements with doctors but on the whole I now have a team who understand my wishes. I may only have a few weeks but who knows?
Hope you all have a good long weekend
HI there girls
Not been on here much lately what with holidays and things.
Louise, bless you, I have been wondering how you were. You are, and will remain, in my thoughts and prayers 'snow angel'. xxxx
Sorry to hear you've had quite a bit of time in hospital, thanks for coming on and keeping us in the picture specially when you are so tired. Glad to hear you are comfortable and I hope you remain so. Have you visited the hospice? They all seem to be very peaceful places and I hope that when you do go there that you will be comfortable and at peace. I've said it before and I'll say it again, I think you are great and I'm pleased to have 'met' you it has been a real honour, thankyou for your support and your spirit.You are in my thoughts and prayers, with love and hugs xxx
Scottishlass,no I've not seen anything from Wayne and have been a bit concerned too. Hope you get the date for you op soon and it sorts out your pain.
Laura, sorry you're feeling down, hope you are feeling a bit brighter tonight. Don't be too hard on yourself, it's hard to be positive all the time!
Mary, good luck with the faslodex Friday - will be in touch before then x
laura64 says on 14 Aug 2011 07:30
Hi just feeling a bit low today day 5 prob the steroids my legs ache I've got a cold sore come up on my lip also now worrying over my scans first 2 chemo worked really well 2nd 2 kpt stable now I'm worrying as sn as i fin they grow again Beeing tn with lung mets it's a worry spoke to oh but they don't understand just worried chemo won't work and it's only first lot prob me Beeing silly just wanted to moan tc everyone xx
So very sorry to hear your news, I too would like to say thank you so much for your support, as Val says life is tough,and we all need friends like you to see us through. I do hope you are comfortable, and the meds are helping you,love and hugs, Mary xxxxx
Dear Louise, I am so sorry that you are not so well and that you are feeling so tired. You have been so supportive to many of us on here and I just want to say it has been an honour to know you and how much you have helped me too. Life isn't easy at times so it is great to have cyber friends like you to share out thoughts and feelings with. I do hope your pain medications are helping you. My love and a gentle hug on its way to you, love Val
sorry if I,ve lost touch a bit, I' been in hospital alot and have finally said no to more chem. I'm comfortable but don't it will be ong before I'm in hospice. Have lots of support but must admit to being very tired you may not near much from. Will update when abe.
Lots of love and thanks for all the support over the years
Cromercrab, You will enjoy being retired. It is the best thing that ever happened to me. No more stress or odd people to have to deal with. We can do what we like when we like almost. It is great that you can keep the flat to escape to. Keep posting on here and we will pep you up. It is a bit scary at first but you will be surprised how much fun it can be too!
I made a few enquiries today and spoke to the secretary of the Surgeon I thought I may be seeing. A letter is in the post and my appointment is on Thursday coming. I asked her if there would be a long wait if I needed surgery and she said No that if it was necessary he could fit me in quite quickly if need be. She said he was lovely and everyone called him by his first name. Good start. I am off to the hospital this afternoon for my Zolidronate infusion. Then I have a whole week to chill and relax and do lots of retail therapy! Love Val
so........ still waiting to see if capecitabine and lapatanib are working. On 4th cycle now and it doesnt look very promising 8-(. I gave myself a shock yesterday. Trying to get dressed too quickly and forgetting that my balance is a bit off I caught the seam of my jeans as i was putting them on and wrenched my little toe nail. I thought I had torn it off , but it seems to be hanging in there.Felt decidedly woozy!
My early retirement is going through and I am expecting lump sum in the middle of this month. The good news is that we dont have to sell our flat in Norfolk. We had bought it 6 years ago to retire to. Its very small and we have ahd a tenant in it which paid the mortgage....just. I am looking forward to kitting it out so that I can escape there as often as possible. I have a niggling demon in my head that I want to do this asap as I dont know how much time I have. Feeling scared............ can you pep me up a bit ladies? I am off out for lunch with a friend later, and have just realised that I have no responsibilities any more re work and I can plan my days as I want, Heady stuff! Off to Edgbaston next week for 2nd day of India test so trying to keep busy
Hi Val and Dawn,
Do hope you get your phone calls soon,nothing worse than all that waiting!
Val I know you are not looking forward to surgery,but as you say the pain and discomfort have gone on too long,so if surgery is going to sort it out, it will be worth going for it. It seems like your team are doing the very best for you. My husband is
the same,it can be frustrating,but it helps them to feel they are doing something,I think we are very lucky to have such caring partners!!
Hope everyone on the thread is feeling as well as can be, take care, and hope the sun is shining where you are,
Thanks Dawn. I plan to phone hospital tomorrow if no word before noon. I hope you hear soon about your cyberknife. I asked the understudy doctor if we had one at our hospital but she said no. Was going to ask if it was something suitable for me. Perhaps I can ask again when I go to the other hospital. I looked up all the surgeons in the other hospital and if I picked up the name correctly, he is not only a normal orthopaedic surgeon but he specialises in bone cancer problems too. I have also been asked by my Oncologist if I would like to be referred again to the 2pain"specialist that I saw before to see if they can tweek my pills around again. It worked last time so I said yes. I do think it is something serious they have found because she was going to give me radiotherapy at first but after the second lot of xrays were taken but I now think it will be surgery that is going to be offered. To be honest I am not looking forward to that but the pain and discomfort have gone on too long so we will just have to take advice and go from there. I am ok with all of this and am NOt losing sleep or worrying about it. I would just like to know what is on the cards and what is happening to the bone.
Keep me posted when you hear back and thanks for your reply. You said on another thread that it is 21 years for you. Well its over 22 for me. What a lucky pair we are to stil be around. Kisses for your grandchild. Xx Val
I read it first here Val :). It sounds like good news that they are doing something about the pain at last - but there must be a question mark over it - is it news you want to hear? I do know that I always feel better about something when they acknowledge there is a problem.
Hubby sounds like he might be going a little bit OTT but mine is like that as well. Just tell him you will go mad if he restricts you too much so maybe he is to accept there is one thing you will do each day. They do worry so much about us bless them but I want to be 'allowed' to be normal. I would say cash in on this for a little while :). I'm glad too that your onc has put you the IV bisphos. Do hope you get that phone call soon - I'm the same waiting on the phone call from the cyberknife people. I might even chase it up come Monday if I haven't heard anything.
sending love & hugs
Have posted on other threads so sorry if you have to read this again!
I saw my Consultant on Monday. CT scans showed no spread to brain or other organs. However a small fracture did show up on L1. Nothing to do with that at moment. But on closer look at more xrays I had done shows there is a problem with bones on knee/hip and thigh. So I am being referred to an Orthopaedic Surgeon. There was talk of radiotherapy but Radiotherapy doctor wants referral to see what Surgeon thinks. Operation seems probable but not seen expert as yet. Keep waiting for phone to ring!
I am staring Zolidronate (IV Bone Strengthener). Not taking tablets now. Hip Hip Hooray! Tea and toast in bed and painkillers can be taken before I even get out of bed. Feel like a new woman!
My husband has banned me from doing ANY housework. Today he has tackled a huge pile of ironing, hoovered the house and is now cleaning out the fridge AND is going to paint the walls behind fridge as he has pulled it out from the alcove! NO you may not have him....this is great....I am just bored to bits. But he did allow me to bake bran scones this morning which we had with cheese for lunch. Hopw all "feeling low" ladies are well. I am still smiling....just very very frustrated....Love to you all, Val
I am now on Capecitabine (Xeloda) on its own, having had good results with it over the winter combined with Vinorelbine. Like you, and many others on here, I am hoping that it will keep things dampoed down and maybe even further reduction, we shall see. But I keep well on it, apart from sore feet.
Hope you all enjoy the weekend and the good weather (well, it's lovely up here in the north west).
Julie, thanks, Friday came and gone, it does help when it was a very busy week. I have seen the onc and will relate more later.
Louise, sorry to hear what you've been through, but good to know the hospice is doing a really good job in looking after you.
Val, sorry to hear about your leg, I would find it very hard to stay in doors because of too scared to go out. I hope they can provide some solution and relief for you on Monday. Will be thinking about you.
Dawn, hope you can get the go ahead for cyberknife. It's awful to be in pain.
Sue, completely agree with what you said. I really hate it when people try to offer all sorts of things they've read or heard that claims to "cure" BC because they want me to stick around longer!! (Who told you I won't otherwise??) It seems now to some people the word "love" is more difficult to say than the word "sorry". I always tell people how much I appreciate and thankful for their hugs and gifts and the way they listen and just to be with me.
Mary, thanks for the phone call yesterday. Won't repeat what has been said already, but You know I'm thinking of you and you're in my prayers.
Finally, about me, or yesterday's appt. Lump on my back neck is very likely to be related to BC, even though it's an unusual place. Onc thinks it's in the soft tissue, but not sure whether there's anything else behind it, thus he's sending me for an MRI scan.
Changes in right breast on the edge of Rads from last year has further confirmed that hormonal therapy isn't working. I'm also suspicious about my liver now because ALT from the latest blood is at the top end of normal range and a few other values related to liver has also gone up slightly. My onc wasn't sure when he was feeling my tummy. So, he's also sending me for a PET scan "just to make sure BC is not present else where".
Hoping the 2 scans will be done in the next 2 weeks or so and we've talked a lot about tablet chemo Xeloda. It all seems a bit premature to be talking about chemo even before the scan (let alone the results). But have heard a lot about this chemo and how good it is. Hoping I can stay on this chemo for a few years and it's the killer for my BC.
Sorry for long post, will let you know when I get the scan dates.
Take care my friends. Thanks for all your support
I have been in the doldrums lately,but that doesn't men I don’t think of you all, I don’t know how I would’ve managed without all your wonderful support,and friendship,it means so much!
Louise sorry to hear of your traumatic experience, but so glad you got help so quickly,and you are reassured that there is always someone there! I hope you are managing to enjoy the weekend.
Val thank goodness you don’t have to wait long for your scan results, I do hope you get some answers about your leg, and something can be done.
Dawn everything crossed that you get cyber knife,it would be wonderful if you got relief from the pain.
Sue I do hope you had a lovely time!! I fully agree with you about the support on here, it’s different to what we get from friends and family, because we understand exactly just what everyone is going through!! I am overwhelmed by the kindness of people,and I too try and tell friends and family how much I love them.
Love and hugs to everyone,you are all very much in my thoughts, Mary xxx