Hi Saffron Seed. I am another lady with bone mets. I have 5 "hot spots " on ribs, hips and spine. I was diagnosed about 6 weeks into my chemo for primary BC. I was grade 3 with lymph node involvement. Anyway, I was terrified at first, but gradually calmed down when I realised it wasnt a death sentence. I take a daily tablet like Belinda called Bondronat and for almost 2 years have been absolutely fine. Just recently, investigations (due to severe back and leg pain) have discovered a tumor on my lower spine L5. I meet the spinal surgeon tomorrow to find out whether they are going to do a vertoplasty (bad spelling) which is an op where they inject cement or acrylic into the area or possibly a course of radiotherapy. I have spoken on here to a few ladies who have had this op and are doing brilliantly so I am not too concerned - just want to get on with it !! You should read some of the secondary threads on here - some very inspiring stories - it really helped me when I was first diagnosed. I wish you well - let us know how you progress and dont hesitate to get in touch if you want more info - love and best wishes to you, Debs x
Hi saffronseed, good luck with your appointment. I was diagnosed with bone mets from the very beginning, in 2003. I was started on Tamoxifen, then Arimidex which held everything in check until 2008 when I started my first chemo, Xeloda tablets. I'm still on the tablets and my bones are in great shape, with lots of healing areas and no bone pain at all. Unfortunatly I now have a (possible) ovarian met so I might be changing treatments next year. Since 2003 I have been on bisphosphonates, at first pamidronate and now bondronat tablets.
And good luck to sweetanimo, oh the waiting is the hardest..xx
I had a CT scan and based on that, was sent for a bone scan as there was some concern re L3 in my spine. Followin the bone scan I was told that I had mets in both my L4 and my sternum but this is 10 years after my initial DX.
I wanted this to be double checked and requested a PET/CT scan which my cons. wasn't too keen on doing as they don't have experience of reading the results.. He has suggested an MRI scan which I have accepted but have told him that I still want the PET/CT scan and have BUPA if a specialist is needed.
I think that all these tests are looked at together to get an overall picture (excuse the pun!) of what is going on and I'd suggest you push for as many as possible!
I was also prescribed the bisphosphonate (bone strengthener) Fosomax by my GP (should really have been the onc..) and have requested Zometa which they will only give to me through BUPA. I'm not taking anything though until I have a definitive answer as to whether these are indeed mets or osteoarthritis/osteopenia.
Being "in limbo" is the hardest bit isn't it, I'm with you there! I really want some answers before Xmas but know that this is highly unlikely..
Take care and let me know how you get on with your Onc.
I hope you don't mind me joining in on this thread I just would appreciate a bit of advice. I finished my active treatment Chemo and Rads in October this year and was referred for a nuclear bone scan at my follow up appt with my Onc early December. I have now had the results of this scan and they are saying there is a 'hot spot' on my T12? (I think). I have had a blood test and they will be putting my case to the MDT meeting next week. I am devestated by this news, I haven't got any real pain as such (just what I thought was normal aches and stiffness due to Arimidex) so it has come as a shock.
I am in limbo at the moment and waiting to hear what other tests/treatment I need and I know you all understand how hard this is. I don't really know if the 'hot spots' are bone mets but I have been told that with my history (large tumour and lymph node involvement are taking it very seriously) but I suppose I am thinking the worst as there does not seem to be any other explanation for the hotspot in the middle of my back.
I gather from your posts there seems to be a sort of 'pecking order' with how they treat bone mets and maybe I am jumping the gun a bit but it would be helpful to know what is likely treatment I could be offered if it is mets - is it more Chemo ?(I have only just started getting some hair), do they operate? or are there other options.
I am currently awaiting contact from the hosptial for an appt with my Onc.
I had aches on my first infusion and then nothing at all ever since. You might have aches on next one, but the word is that most folks don't really have much in the way of aches after that
Just a bit of a moan really. I wasn't in any pain at all until I had my first zol infusion last Wednesday, now I have to take pain killers as I ache all the time - that sort of ache when you've sat on an uncomfortable chair too long. Does anyone know if this will go or will I be lumbered with it as a side effect of Zol treatment.
It is weird how you can get these little blips so suddenly. I had one this week - fun night out but bumped into my old boss who i had assumed didn't know about the whole cancer thing as she's someone i thought would have been in touch. Turned out she did know but i think had just felt awkward or didn't know what to say and then the longer she left it the harder it was to get in contact. Don't think she knows the whole story though. Was nice to see her and catch up but for some reason i just felt this little dark cloud descend later that night . I suppose we have every reason to have our down days -even when we are trying our best to remain upbeat. even 'good news' is all relative, we now quite happily settle for a 'lack of bad news' instead! - as my partner said once after i got back from a visit to my onc with some 'thank god it hasn't spread there yet' test results - "well, I suppose it's the more positive end of 'sh*t'"!
Seems like we go up and down with our moods. Normally I'm a very positive person and have only occasional blips, but this morning I cried because I didn't get the recycling box out in time, for them to empty. How stupid is that? Now we've got to wait another 2 weeks, by which time we may have had another dump of snow. Yes I'm in Scotland - not even in the Highlands, but sunny Dunny (Dunbar) where the snow still lies and the pavements are treacherous. I've already fallen once and am petrified of going A over T again.
Right Isobel...pull yourself together, get dressed and go and do something...!
Hello Julie and Homer,
Julie, no, paracetemol wasn't suggested but next time I'll take some and see if that helps. I do feel better this morning and the pain is subsiding much to my relief.
Homer good luck with your scan today. I hope the chemo has worked and you can chase Mr Glum away for the weekend. Let us know how it goes.
Thank you for your advice.
sorry you are feeling rough hun, and i hope you feel better tomorrow
i don't think you are a whimp at all, and fully understand how you feel as Mr glum has been with me today too
i have been having pain in the area of my bone met and I'm scared stiff that the chemo i have recently finished didn't do its job,
i am having a pet scan tomorrow so i will know one way or another
Thank you Julie,
I suppose I've been lucky so far in not having pain - I know other ladies on this threat only find out about bones mets through aches etc. I hope, like you say, the next treatments will be kinder to me. Its just it brings it home really - being quite ill - as long as I don't feel pain I can be positive but when I do my life force just goes. Sorry for being such a whimp!!
The first time is the worst. Sorry you have missed your Christmas do !!
Were you told to take paracetemol with the infusion, as it can take the edge off it ???
Most people only get minor aches and pains following future infusions< indeed I believe some people have no side effects at all.
I was feeling so up beat yesterday but sadly not today. I had my first Zol infusion yesterday at 5.00. Felt fine this morning at work and then suddenly ached all over by lunchtime - this is the first time I've felt pain and unwell so it scared me. Cancelled Christmas works do tonight as I also have no energy, again I usually do so this to is making me feel a bit down. I saw my original breast consultant yesterday who said they have contained it (the cancer) but after today I'm not so confident. Hope tomorrow I'll feel better, sorry but Mr Glum is here again.
Hello everyone, I've enjoyed reading your posts.
Crawfo64, I know what you mean about what ifs, I sometimes think what if and why didn't I notice my lump sooner, caught it before it spread, but whats the point, it has and thats that. Makes me want to cry though and sometimes I do.
12mark, you say your scans are in January, I think I have my first scans after diagnosis and treatments at the same time. We can both chew our nails to the quick together!!
Hello Helen, Holly and the Ivy is my favourite Christmas carol. I'm feeling very festive and actually love this frosty weather. The trees look an absolute picture in Cheltenham with the heavy frost on them. Glad to hear they look just as good in your neck of the woods.
Val, hows the snow where you are - heard its still bad?
Love to all.
Thanks for all your responses. If nothing else it's good to know I am not alone. I have finished my first course of chemo now and will be seeing the oncologist again in a couple of weeks so hopefully things will seem clearer then.
Scottishlass, like you I can't understand why they didn't do better follow ups. I was discharged from oncology in April and had a breast examination then. I also had a routine mamogram in May, neither of which picked up the lump in my "good" breast which I found myself in July. I'm angry enough about this but given that it seems secondaries can appear years after the primary diagnosis, why didn't they do occasional scans or blood tests and how different might my outlook be now if they had.
Lots of messages since I last read. Lots of lovely words from Val. Lots of "blues" too. But we are all here, typing away on our laptops discussing all the amazing treatments we are having. This thread has been more help to me than all my family. To find others who are still going under incredible circumstances has given me strength that I didn't know I had.
Sharon - ostrich, head in the sand - exactly. That's how I do it. This isn't happening. I don't have cancer. Just carry on. They must have got it wrong. Live life just how I used to but perhaps a bit louder.
I've also asked not to have any scans unless really necessary so my onc. is using cancer markers for now. Ca 153 is right down at 29 so looking good.
Myfanwy - 3 rads to go!!! Redness gone and no tiredness as yet. Mr Glum did creep in though this week. Had to stop the car and have a good cry on the way to work. It was the daily grind of hospital that got to me. We're all going to Pizza Hut at the weekend to celebrate the end of mum's treatment.
Better go and pick up children. Keep smiling girls. The Somerset countryside looks beautiful with all the white trees. Makes me think of that carol - "In the bleak midwinter"
Hi Sharon, before I got diagnosed with bone mets I too had aches and pains which were quite severe too but put it down to my age etc. My bone mets are extensive too as my pelvis is the worst bit, and I have it in my spine, ribs and sternum. Looking back I do not know why the NHS did not keep a better eye on me at my check-ups. I cannot understand why they did not do blood tests as they would have seen that there was activity somewhere in my body as my tumour markers were sky high. Is it to do with money or lack of knowledge or what? I felt bitter at that time but was so overwhelmed at the time of this new diagnosis and I though that the end was nigh. I was stunned. Would it be possible to request to see your actual Consultant this time so that you can talk about your concerns? I don't think you are living in delussionville, just a plucky lady who is trying to get through this difficult time as best she can. Pleas keep posting so we can see how you are doing Sharon. Much love Val
Hi Isobel, the things friend's say at times can be so hurtful. A friend of mine said "but Val any of us could be run over by a bus tomorrow of I could have a stroke and be dead tomorrow". So your point is I answer, because a bus or a stroke could run me over too but the fear of cancer killing me is there too and we have to deal with that every day. I too feel there is lack of feedback about the differences in people surviving and not surviving with mets. I feel I am told so little and in fact when I go to see my Oncologist that I do most of the talking, I do get honest answers but I don NOT get much of new knowedge. I don't knoe wxactly what I am looking for I just know there is something missing sometimes. love Val
I have my Ca153 checked every month. Before chemo markers were 1000+. Not very good. Now after 4 sessions of FEC they are just below 300. Onc is v pleased ( not half as pleased as I am) and has put me on two more FEC(had no 5 yesterday). I am hoping that the markers will continue to go down. Then I will be on weekly tax and 3 weekly herceptin as well as zometa.
I dream of markers below 100. my mets are extensive and onc is persuing an aggressive course of action. Hoping for mx after chemo.
Oh Sharon - I am right there with you. I get this sick feeling in the pit of my stomach, when it comes to results. My next scan isn't due until towards the end of January, and already I have that feeling. I hate being like this. A friend of mine said there's no point worrying yet, it's a long way off...er hello, she doesn't have this bloody disease...I EFFING DO! And yet, like you, most of the time I am really upbeat and can shove it to the back of my mind and visit with you in Delusionville. It's nice...I like it there and I also think it's quite healthy too.
If you had the scans, but not the results, wouldn't you still worry? Wouldn't you know the results by the treatment they then offered you? I'm not sure I could do that.
What I want to know is, how have people lived many years with it? Is it the type of tumour? Is it how they live their lives...forgive me, but do they drink broccoli juice every day? I want some of that!
New treatments are coming along all the time and someone, somewhere, right now, is working on something that will halt this bloody disease in it's tracks. That's what I believe and that's what I hold on to.
I apologise for this blether, but I've shifted some of the weight, so thank you for letting me do that.
Sorry to hear you're feeling this way and if you need a good listening ear don't forget the helpline staff are here to support you through this. Do give them a ring and have a chat.
I haven't been on the forum for a while but looking back through the recent posts I see quite a lot of you are concerned about receiving results from rescans and I'm glad I'm not the only one. I am coming to the end of my chemotherapy and the onc has mentioned that I will soon be having scans to see how the treatment has worked and until now I've never really considered the possibility that it wasn't working. I'm not naive, I knew the possibility was there but I was pushing it to the back of my mind. Now the issue is being forced and I think I'd rather not know either way. Would it be too "head in the sand" of me to ask the onc to go ahead with the scans but not give me the results. Do many other people go with this as a coping strategy. My onc is great but being the national health, I don't often see her, it's usually one of her minions. I find the doctor I have seen the last few times very negative. A few times he has said something like bone mets are much better than soft tissue mets or bone met patients come back to see him year after year, which sounds really positive but then he will qualify it with "but you're mets are quite extensive so you shouldn't expect that."
Every time I read a post or follow a link that one of you lovely ladies have posted about living many years with it, instead of feeling uplifted, I feel...
....I can't think of the right word, I don't want to say bitter but maybe there's a little of that. I had some pain between my shoulders for a while before the diagnosis and now know I should have gone and got it checked out. It wasn't a bad pain, just a little sore, I put it down to working with computers and not having my chair adjusted properly. When I read those stories I think, if only I had gone to see the doctor sooner, that might have been me but now the only thing I feel any hope for is living to see my 50th birthday, I don't think much beyond that.
I don't think about it all the time. Most of the time I live in delussionville but now and again it crops up in my thoughts and it's hard not to despair.
Sorry for being so negative, like I said, I'm not like this all the time, only occasionally. I think it's probably to do with coming to the end of the chemo treatment. If you've managed to get to the end of this rather long post, thanks for listening.
Hi, thanks for your coments. I am er+ and her2-. When my bone mets were first discovered my ca153 was 69 but after rads it went down to 27 but over last 18mths it has been slowly rising, now at 89. My bone scan and mammogram in july were clear and so was my ct scan in october.
I suppose I am nervous about having chemo again but I also realise its inevitable.
I am 40 next year and I was first diagnosed at 34yrs old so I think I am doing fairly well.
I live alone with my 2 kids. My relationship with my partner is very strained at times. My libido is zero, is that normal?
I am usually quite positive but sometimes everything starts getting me down x
I don't often post on here, but just your post Rachel.
I have ca153 tested now every month. However, mine has always been actuate. I know that it's not something to be relied on completely as some benign conditions can cause the level to go up, too. Hope the bone scan can give you a final answer. My onc always used to go by MRI and CT, but now PET scan. ca153 is only something to give me a peace of mind, or an indicator that something might not be quite right.
Hi Debbie, Sorry you had a mixed bag of results. I have been on Arimedex before and it did the trick for me so I hope it works for you too. I hope you can manage to put this on the back burner until next week so that you can enjoy your 50th birthday. Let us know how your appointment on the 16th goes.Sorry I have no other advice but I am sure someone else will know. Love Val
Hi Ladies, just back from the hospital for the results of the CT scan. It was a mixed bag - the great news is there is no spread to my major organs. However, the glands in between my lungs have doubled in size (1cm - 2cm) and the cancer cells are active there - also indicated by increased markers (44). The Onc is putting me on Arimidex for 3 months then I will have a furthter scan and if this hasn't worked it will prob mean more chemo. Still got the tumor on spine to sort - that appt is on 16th Dec BUT all in all I feel lucky and will enjoy my 50th birthday tomorrow to its fullest. If anyone else has experience or advice on this latest development, I would love to hear from you. Keep well everyone, xx Debbie xx
Hi Rachel, I do not know anything about your particular tumour marker but I get my blood tests done every three months and they look at my CA125 and CEA markers. My markers have almost doubled in the 3 months between my Oncologist check-ups. When I come off my chemo (Capacitabine) I know the markers will rise. But when I am on chemo it is a useful indicater to show if the chemo is working. My Oncologist insists that she cannot go on my markers alone and takes into consideration how I am actually feeling for example. At the moment I feel reasonably well even although the markers are rising, I am not starting chemo just yet. Because of a new leg problem I will be having an MRI Scan done on the 13th and I presume after that a decision will be made. A CT Scan may be next but is not a definite. I haven't had Taxotere either but I know some ladies on here have done. Good to have you joining the thread (but sorry too if you know what I mean). There is a closeness on this thread that I find very comforting. Take care, love Val
Hi Homer, welcome to you too. I am sorry that this time of year is not a good time for you. Do whatever is best for YOU regarding the decorations. Hope your pet scan on the 10th goes well. We will be here for you nomatter what it shows up. I am sorry that you are frightened but I think I would be too.
Hi Sue, I keep meaning to send you a PM....sorry I haven't got round to you but think of you often. Hope you are keeping warm, we have yet another HUGE snowfall here and are stranded yet again indoors and there are NO BUSES at all and no shop within walking distance! A new shop is being open nearby and is due to open on Thursday but I can see that being postponed. But I have plently of milk ( and wine) in, and I can always make more bread and soup. Much love Val.
Love to all other bone mets ladies. Hope you are coping ok. Val
Hi all, does anyone know about tumour markers or ca153 levels?
I was originally diagnosed with bc in 2004 and had bone mets discovered in 2009 in my sternum. I have been reading your posts with interest its great to know I am not alone.
My last ct revealed my sternum was improving(healing as my onc said!) but my tumour markers are still rising my onc is concerned there are mets somewhere else but they cant find them. My ca153 levels are 89 which are the highest they have ever been. After radio in 2009 I have been on zoladex implants arimadex and bisphosphonates but now my onc is talking about chemo (taxere? I think thats what its called.) I am obviously not that keen!!! I am feeling quite well so loathed to feel shite again with chemo. Also I am waiting for yet another bone scan!
Anyone know anything about tumour markers or had similar? would like to hear xx
Just read your post - your fear about whether the treatment has worked or not is similar to mine - but my scans wont be until the end of January and I fear the treatment is not working and the cancer is going unchecked within me. For me it is sometimes like looking into a very dark place, round and round in my mind - usually in the middle of the night - lets hope for both of us the fear is far greater than the reality.
I'm sorry this time of year reminds you of your dad. I to love my Christmas decorations and know if I, lets say keel over, they would make my loved ones sad and probably wouldn't see the light of day again. But I wouldn't like that - I would want them to get together over a bottle of bubbly and put all my baulbles up and love them as much as I did. Just a thought.
Thank you to everyone who has offered a wise word to me - it really helps.
Dawn - so glad you are looking forward to a Christmas with your new grandchild - something you said you never thought you would see but will.
Val, if you need to bend anyones ear in future years mine is available! Hope you to have a lovely Christmas. Your right, my dear Nigel is a treasure - even made me buy a sexy see through night dress although I didn't feel like it after the operation and hugh scar on my chest. Yes, he did appreciate it, bless him. I'm feeling a bit more positive now although next week is a bit heavy with treatments - but there is racing at Cheltenham on Saturday and I do plan on going - I so love looking at the horses - I shall look forward to this.
Looking forward to hearing from you all - espcially Sadie - does anyone know how she's getting on?
Much love, Myfanwy x
i don't post on here that often but i do read all your posts
and this thread especially.
i have a repeat pet scan due on 10th December so next Friday,
to find out if the 6 Taxotere's i recently finished have done the job
of stopping any further spread from the sternum cancer i have,
if its still only in the one area i will be facing having an op to remove part of my sternum, if the scan shows spread however i don't want to think of what i face, as my onc has already told me that he hasn't really got much more he can give me!
i am very scared of the scan even though i was pushing for it,
as i am scared of the what it will show up
i am feeling down as Christmas always reminds me of my dad who i lost to cancer a couple of years ago, he used to love it and couldn't wait to put his decorations up
i found ours out today but couldn't face putting them up....maybe tomorrow i'll do it for my dad xx
I couldn't agree more. One Christmas when my son was little all the boys were getting Thunderbirds Island etc for Christmas so I spent £60 on a huge lump of plastic only to see him spend all day in the box it came in playing with a 75p stocking toy from the market! Save your money for when they are older believe me you will need it!
AND I am saying that positively because I have decided that I am going to be around for a good few Chrsitmas's to come and I am sure that many of you will be too. I am sending positive vibes out to you all. Let's eat, drink and be merry! Yes, relax, sod the turkey have steak or whatever! Buy it all from M&S or somewhere.
Hugs to you all - keep warm!!!!
I think the best thing you can give your children is your time and attention. That is what they will remember most not what you bought them.
I have told this story before so forgive me if you have heard it. I asked my daughters a few years ago ( now 28 and 35) " Of all the Christmases which day did you enjoy the best?". My husband, a phychiatric nurse was on early shift, they didn't want a traditional Xmas dinner. So we got up sat around in our pajamas eating whatever we fancied, just chilling, watching TV, reading new books and opening some of the presents. Instead of spending all day,and the night before, preparing a huge meal, we waited for my husband to return home thenthe four of us ordered a carry out Chinese meal! Which meant hardly any washing up either! They said that they enjoyed the time because there was no stress and we just took it easy for the day, and they got to choose what they wanted to eat.
Another year at their request we miseed out the usual Xmas meal again, and on Chirstmas eve I made several curries, while I sipped (slug!) a lovely bottle of finest red! That went down a treat too! When children are small, whether they are yours, granchildren, or just friends kids, Christmas time is MAGIC and I love that part of it. But as the years went on it seemed to me that everything went overboard and for some it was HOW MUCH you got, or gave for Christmas. My girls said they never felt hard done by, though I am sure there were times when they wished for something they didn't get! So Nicky just be with them at Christmas....that is what they will really want.....and remember. Hope this doesn't come across as patronising as it is not meant to be like that. Oh Christmas can be so stressful....if you let it. Love to you all especially those who are feeling a bit flat. Love Val
Just adding to those 'Christmas tree blues' feelings. THis is of particular relevance to me. In 2006 (December 22nd - I remember it well) on the day of my original diagnosis my husband was at home finishing the wooden flooring in time for Christmas. I came home in a state of shock and had to put up the tree. Every Christmas song seemed particularly poignant. Somehow we got through Christmas.
The following year on quite a few ocassions I wondered how I would feel when it was tree time. When the time came around, I felt great, it was a really happy time...I had finished my year of treatments and had my future back. I felt great really happy. Then the next two Christmases I have reflected again and felt really happy with life. Now this year my future has been taken away from me in such a cruel way. I feel quite selfishly that I really appreciate all that is good in my life and feel very angry that I should be having to wonder from now on whether this will be my last Christmas or not.
I also don't know how to handle children, do I give them a fantastic Christmas with everything they need to satisfy my own needs, or will this make my absence more difficult in future years. The empty chair comment really struck a chord with me. I remember when my Dad died my Mum threw out the chair he always sat in and rearranged the furniture because she couldn't cope with the empty chair. It has made me realise I always sit at the same place at the table and on the settee, perhaps I need to move around a bit so my son doesn't have to cope with the 'empty chair' problem.
Anyway I suppose I must go to bet and hopefully will feel a bit more positive in the cold light of day.
Here's hoping that we will all still be here be moaning again this time next year.
Love to you all and good luck with any scans and results and treatments this week.
Busy on here today, good to hear from so many. Sorry lots of us are having a bit of a rough time but so glad we have these forums to share and help each other.
I'm ok at the moment. Got an ultrasound and my zomeata next week and had been worried about the weather as snowed in but rain has cleared a lot of the snow so more hopeful now.
Hope that scans etc go as well as they can, I know that you will deal with whatever you have to, but hope you don't have to!
Keep warm, lovely ladies, my thoughts and love are with you all, Julie xx
Dawn, Lovely to have a new post from you. What a nightmare about the meds. I always make sure I have plenty in to accomodate when things such as this. Pity we couldn't live near each other to "help out" when short of something. Probably shouldn't write this!
Dawn, I am not at all worried about the scan or the result. What will be will be. Have had too many scans to mention. I will deal with whatever shows up when the time comes....may need a hug if it is not good though..haha! Keep in touch Dawn, You helped me in my early days on the threads when I didn't know what to do, and when I had a problem, and I haven't forgotten that. Good to have you posting. Have a Fabby Christmas...ooh how I envy you...kisses to the wee one. Love Val
It seems quite a few of you have been going thru those inevitable 'down times'. It is good to let it out here - cos then you realise you are not alone. Isobel I do know what you mean about the dreaded scans. Some time back I made it clear to my oncs that I don't want regular scans with all the hangups that go with them. If I feel anxious about anything I will tell them, and ask if I can have relevant scans. They seem to have gone along with there. The only ones they insist on are the MUGA scans that go with herceptin - but even those I have managed to hold out against 3monthly and have them 6 monthly. Actually that is how it is supposed to be for those on it long-term. Because the MRI showed up the new soft tumour by my spine I did then ask if I could have a CT (hadnt had one for 4 years) because I thought if that sneaky soft tumour appeared where else were they. I knew then I would just worry until I got it checked out.
Myfanwy I to had the Christmas tree blues and they used to come round each Christmas as I decorated the tree for a while. More recently I have been able to look back and almost hug myself that here I was for yet another Christmas - and that was a good feeling. I know it will be great this year because it is our first one with a grandchild - and that is a dream come true. I look back and am just so thankful for how many specials I have lived to see realised - the anniversaries, weddings, births etc. etc.
Val I do hope that MRI doesn't cause you worry time over Christmas and that the results will be o.k. for you. I think what is so hard to take about this disease is the inevitable happening, but not knowing when. I know some folk say we all have to die but I think that is one of the most unhelpful things I have ever heard.
Mary good to hear from you too. Sorry you are feeling a bit down the past couple of weeks - the extra aches & pains do make us wonder what is going on in our bodies don't they.
I nearly flipped this week. Quite a few of my pain meds only last me 10 days on the script. This week the local chemists were not getting their deliveries because of the snow problems and so both the fentanyl patches and lozenges were not in stock. There was nothing they could do! Also they didn't have a pharmacist in. One had a child rushed into hospital, the other was trying to make her way from Sutton - 20m away. She did finally make it and called me to say they had patches for another patient and would split them between us. In the end I don't know what happened but my OH came back with a whole box :). I think I am going to have a word with my GP about having an extra box of each in hand. It won't go down well I know - they are, or rather the PCT is, forever moaning about the cost of my meds!
The snow caused real problems on Tuesday for me. I had been to the Marsden for my regular 3-weekly treatment only to find how bad the snow was. What should have been a 30 min. journey took me 5 and a half hours!
Many many thanks too Finty for starting this thread. I hadn't realised how many of us there are with bone mets on here - and what a variety of complications we have between us all. It is so good to find others who understand where we are coming from. So big hugs to all on the thread - some we haven't heard from for a while - so do let us know how you are too.
Thank you for your kind words, it is also a privilege for me to 'meet' you It must've been awful in the early days,when you had no one to share or understand what you were going through!! We are so lucky to have these forums,were we can disclose all our fears and worries, and be assured that someone will respond and understand!!! I feel I have made some real friends on here, and don't know how I would've coped without them!!! I will certainly be here for you if ever you need any help,or just someone to have a moan with!!!
Take care Val,sleep well, Love and hugs Mary xxx
Hi Mary, Isn't this special thread of ours just great. It is a difficult place to be in when you have mets ( of any kind) and having people who REALLY know what it is like to cope with makes it easier in a way. I had no-one to share with like this when I got diagnosed in 1999 and I felt so alone. It is a priviledge to be amongst such lovely women as you. There will come a time when I will need someone to help me through the darker days. But if I can help in any way just ask. Live for today if you can. Who knows what the future will bring. One word of wisdom....the things I worried about most never happened....and things I never thought about caught me unawares....so why worry? What will be, will be. One day at a time. Hugs to anyone with worries, things to cope with, including scans and results. Much love Val X
I too am at a low ebb, I haven't felt too good the last couple of weeks, my bones are aching, and I feel like I have a permanent flu! I have a scan coming up next Friday, so worried about the result!! Val reading your posts have made me realse how much time I spend worrying about things that I can't control, and you are so right, we need to look forward. I am like you Myfanwy I am worried about my dear husband,who will also be on his own, we don't have children.and he doesn't have a lot of contact with his sister. I lost my only brother to cancer, so of course Xmas is a sad time for me.but Val's wise words have made me realise that we must make the most of what we have got! What is the point of spoiling any good days, worrying about what will be!!!
Isobel I certainly understand how you are feeling,I too can function 'normally' except when the dreaded scan looms, and the prospect of having to go on chemo might be on the horizon!! Val has expressed it so much better than me....one day at a time!!! Take care,we are all here for you x
Val I do hope that whatever is ahead of you, be it chemo or not, you will be able to do your trip to see your daughter. Thank you for positive posts, they have certainly made me take stock, and give myself a shake!!
Take care, lots of love and hugs, Mary xx
Val, thank you for your words - of course you are quite right - will let you know how our festive fun days go. I hope you have a wonderful Christmas although I know your health is not quite how you would like it at present.
Oh Myfanwy, I am sorry that you are worrying about next year. That's the problem with Cancer but remember everyone's cancer is different.
I don't celebrate Christmas quite like I used to as we used to have the whole family here for Christmas dinner. I don't have siblings so family has always been important, yet missing from our table this year will be my aunt and uncle, who both died from Cancer, and my husbands parents who both died in 1999. My elder daughter lives in France and needs to cover shifts at her work, and they only have a few days off so it seems more sensible to have her Christmas with her boyfriends family in Brittany....so yet another two empty chairs at the table. My parents are still here but Mum is in a Nursing home and Dad is getting frailer too.I will have them here as usual. They suffered badly when I got BC aged 39. Christmas is not all fun and cheer for a lot of people. My door is always open to anyone who calls but its the empty chairs that make me sad. However you must enjoy the time you have and show Nigel just how much you love him. Chin up and please don't feel sorry. We are all in the same boat. Love Val
What makes me so sad is - will I be here next year to put my tree up again- will I die and leave my dear Nigel alone, he has lost all his immediate family to c. I'm just finding it a bit bleak at the moment. Sorry.
Myfanwy 18 x
Hi Myfanwy, I was busy typing so missed your post. The low times do hit us at times but you are amongst friends here and we know what you are talking about. What makes you so sad tonight? Hugs to you too, love Val
Hi again Isobel, I always think men don't deal with emotion easily. But I have always thought "It is not what people say that matters, but what they do". For example my husband doesn't say much yet he cared and does things for me that are never-ending. Your other-half is coping with a difficult situation and I think it is much harder to watch someone you love dealing with cancer, than dealing with it yourself. As a cancer patient you are too busy dealing with it day by day it takes most of your energy just to do that.
Before I had BC I had a neighbour whose lovely son David had cancer and lost all his hair. There was a point when I didn't want to continue with the horrendous chemo called CHOP....but I thought of David and said to myself, well if David could do it and still go out on his bike.....why can't I?
Now planning the future can be a good thing. To have something to look forward to, that will help you get through the bad days. For example we have booked a flight to Bordeaux to visit my daughter at the end of March. Plane tickets have been purchased.....yet I may be on chemo or may not be well enough to go. But just by booking it makes a difference to my head, if that makes sense. When I was first diagnosed with mets my prognosis wasn't good and looking back I wasted a lot of time worrying about life being cut short. Well the 2 years I was "given" has passed and 11 years almost 12 I am still here. I have been where you are so know exactly how stressed and mixed up your feelings can be.
I was NOT bored to tears by your post. In fact it helped me to realise that I had been there and I feel different now. As the years have gone on have found a comfortable place to be. (up-and-down at times admittedly). Please keep posting here if it helps. Other people will read your posts and see themselves, but may be unable to put in words how it is they themselves feel. Hope this makes sense. I hope it will become easier for you before too long. Love Val
Yes, I try and keep positive - but sometimes I get so low - like tonight - oh - how I like being alive.
Hi Val and others,
Thank you for your reply. I have read many of your posts and you always seem so upbeat about things and you have been an inspiration (along with Dawn, Belinda and Celeste). I know we all have down times, but I find it difficult to express how I feel about this whole bloody thing. My other half, says that I shut him out, but I don't think that I do. When I talk to him about 'my disease', he listens, and then says he doesn't know what to say to make me feel better. The thing is, that I don't know what I want him to say either!
I have a lot to be thankful for and also try to take one day at a time. In so doing, I find it difficult to plan for the future...like holidays in the summer. I'm frightened of what the next scan will show. Will it mess things up etc?
I'm rambling here, but feel better for putting it down in words. I've probably bored you all to tears, but thank you for giving me the space in which to do it.
Dear Isobel, I am sorry that you have had what I call a wobbily but I am pleased that you came on here to tell us about it and didn't try to bottle it all up inside. I have been where you are, but now it doesn't worry me quite so much. I am having an MRI Scan on the 13th and the results take about 2 weeks but as this falls inbetween Christmas and New Year I don't expect I will get my results until the new year. Your post in some way could mirror thought I have had in the past. Not wanting chemo, yet wanting to fight off the bug*ers and blast them to H*ll and back! The waiting for results is always the worst bit for me. I suppose that I am getting used to all the scans as I have been having them for years.
Now back to you. You won't be able to make it go away. Sometimes I think how lucky I am compared to others...isn't that strange. But keep posting on here and PM me anytime you feel you need a shoulder to cry on or just to voice your thoughts. Take care. One day at a time and you will get ther. We are in a similar boat so you are not dealing with this on your own. Keep warm and here's a HUG just for you. Love Val
I haven't posted here for a while, but joined the discussion back in August. I read it a lot. Anyway, my MRI from the other day, showed 'slight' further progression in the two known areas in my spine. I don't know how I feel really, so thought I would 'blog' on here and try and express my thoughts. I am disappointed, naturally, but not grief stricken. I expect that is because I haven't had to have the dreaded chemo yet, which is being kept in 'the back pocket'. I don't need a further blast of rads yet, either - again, maybe later.
Most of the time, I live in a state of denial - except when the need for scans comes around (too often). Then I fall apart. I know I need to have these things done, so they can pick anything up early, but in a perverse way, I DON'T WANT THEM DONE - in case they find something. How stupid is that?
I feel guilty for feeling like this, especially when I know that millions of people don't even have access to either clean water or basic health care. That is the way I try to deal with this 'thing'...but it doesn't always work. Most of the time, I'm OK, but I have this thing growing inside me, that won't go away. MAKE IT GO AWAY!!
Don't mean to shout and I hope/know someone out there understands the dark place.
Hello everyone, hope you are all ok.
Helen, glad your getting on ok. Its a shame your getting a bit red - I'm not, as yet, but I haven't had so many treatments as you. I to have been slapping the aqueous cream on in a hope of delaying the reds! I'm quite lucky with the timing of my treatment - its after work so when I get to the hospital its almost like the nurses are waiting for me to get in and out as quickly as possible - so no waiting about which is great. I think this has helped with the fatigue - fingers crossed but I'm ok at the moment. Tell you what - it really came over me on the way home from work today - did a bit of shopping and just cryed on the way home, couldn't help it. I do try and stay positive but Mr Grim crept up without warning - the b.gg.r! Feeling brighter now though.
Glad to hear from you and look forward to hearing from others who have posted on the site previously.