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livlassie
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01-05-2012
57
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25-05-2014
11:52
Hi Nicky - dont get too anxious about the irradiated area getting "worse before it gets better". I've had pretty big doses to my hips. ribs and spine. I had no after pain at all in my hips or ribs. The spinal (sacral) area was a bit tricky afterwards and i had to call out nightime docs. but if I had been warned beforehand and had an "action plan" in place, I could have coped much better. I will always make sure of this in future. This disease is so individual that it's hard to predict how we will cope during and after treatment. Hello to all you new ladies -I am two and a half years since dx. Primaries and secondaries ( bones and two tiny suspicious areas in the chest wall) were diagnosed a couple of weeks apart = it fair sends you reeling, doesn't it? I feel very well but sore and much much older than i used to feel. I think i under report my pain to the docs as i don't want to be a moanie old nuisance. Does anyone else out there do this? I'm being treated with hormones ( two and a quarter years on Letrozole and now on Exemestane. I also get Denusonab injections once a month - in the arm. I did get monthly Xometa infusions until xmas and may return to them as I feel they were more effective and carried fewer side effects). This forum has been very quiet recently. So sorry all you new folks have had to find yourselves here but it is a ver supportive place indeed, Never feel bad about coming on and moaning or being upbeat either - all our moods and feelings are valid Love to you all Louisa x
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29-04-2014
03:05
What sad news this is. A lovely lady with so much kindness and thought for others, especially those newly diagnosed who come on here scared and bewildered. Heartfelt condolences to Val's family. Rest in peace Val. xxx
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07-04-2014
04:42
Julesie , Thanks very much for that update and i'm glad that Val is feeling better. Although i have never met her, i have such admiration and affection for her. I rarely post but often lurk, i'm afraid! Thanks again x
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05-04-2014
09:15
Hi Anita. Please don't give up on pursuing this benefit. My onc apparently wouldn't sign the DS1500, even though I have very extensive bone mets which cause considerable pain and mobility issues. I didn't actually discuss this face to face with the onc, but one of the breast care nurses told me that the onc is very "positive" and won't sign anything suggesting that my life expectancy may be six months or less. Like you, i was very upset. felt like a sponger and cried all day. I felt that it was such a slap in the face. I approached a local MacMillan benefits advisor, made an appointment to see him and ask for help. He phoned me the day after the meeting and told me that he had the signed DS1500, signed by a doctor in my GP prsctice, who also telephoned me at home and wished me well with the application! I felt much better and stronger after that. I had a background in welfare rights advice myself but couldn't be dispassionate enough to deal with my own claim. Good luck Chilli - Sorry the DLA was refused but it's very important that you or anyone else in this situation ask for a reconsideration ( sometimes done over the phone, if you have all the info to hand) or a review of the decision. The DLA is not awarded for your condition but for the way your condition disables ypu and affects your life. It's very important that you give as much info as possible about this. When you answer any question try to imagine you on the worst possible day and then describe what life is like for you on that day. Concentrate only on these bad days and going through all the categories. keep these bad days in mind and answer each set of questions carefully relating the questions to how your illness hampers your normal activity. Remember that about three quarters of all the cases which go to review get the original decision overturned -so it's worthwhile. Good Luck.
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05-04-2014
08:33
Does anyone have an update on Val? Like many others, she calmed and supported me when i first came on here and was completely inspirational. I don't mean to pry but any information about how she is would be very gratefully received. Good wishes and all my kindest thoughts to you Val. xxx
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05-04-2014
08:30
I was on Letrozole for over two years Madge. In the beginning i did experience an increase in pain around the back and pelvic areas and all the other mets areas really. It did get better with time and after two years it was difficult to know how much was mets pain and how much was being caused by the Letrozole. The worst pain was in my thumbs!!! That was pretty persistent and led to loads of broken crockery. Itried to imagine my joints and bones as a huge building site, with lots of structural shoring up going on. That made it easier - more constructive and positive, for me anyway,
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21-12-2013
01:24
Hi I live in Livingston West Lothian. Between Glasgow and Edinburgh but much nearer Edinburgh (about 12 miles?) which is where i worked .
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30-08-2013
08:25
Thanks for that Jo. It does seem to be much improved so far. Well done for that! xx
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30-08-2013
08:24
Hi Val. Thanks for the nice words of welcome. I did some reading of the posts i'd missed and was so sorry to hear about your recent issues. I have skull mets too - a couple at the place where my spine joins my skull, i think. They are the scariest ones, aren't they? You've also had the osn to deal with and that must be tough. Think you are right to cautiously wait and see, if the osn isn't actually causing you any difficulties at the moment. The chocolate roulade sounds yummy and well done for doing it in the morning too. I'm useless before noon-utterly useless! I think you are bloody marvelous! xxx
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25-08-2013
04:59
Hi Janine I have had rad therapy to rib and hip areas without any pain flare up afterwards. However i had a single session to my lower spine which did result i an increase in pain. My main concern was that i hadn't been warned about this by the onc or the radiotherapy unit, so it took me by surprise and nearly sent me round the bend! Be aware and be prepared with proper pain killing meds and don't delay and try to tough it out before calling for help. If i had known i'd have been straight on to the onc unit or the PCT. I think it's all very personal and individual but be prepared anyway! Good luck. xxx
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25-08-2013
04:46
Val I haven't been on the forum for ages as I hated the changes they made to it and couldn't cope with it. When I first posted on her, on the old old forum! You and some of the other ladies were so nice and gave me so much courage and hope at a time when I was reeling in shock. I am so glad to see that you are still here and still full of life and kindness and inspiration to others. Letrozole and zometa have stabilised my bone mets for two years now. Never dreamed two years ago that I'd still be well. Sure, the letrozole is a bugger and makes every joint feel about 230 years old instead of 56 but I can cope with that as long as it's working on the lesions. I am away to catch up on all the posts I have missed over the last year or so. All the best to you an everyone else on here, xxx
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24-01-2013
10:04
Jackie, so sorry that you have to be on here at all but as you are aware, it it will be a positive experience to continue posting and that the ladies will all gather round you and offer great wisdom and comfort. I have been on Letrozole for multiple bone mets for 17 months now and all is stable. Reading what the other bony ladies say on here has made me leass scared for that time when the Letrozole stops working.
Louisa X
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24-01-2013
09:55
Jacqui I was so sorry to read that you had lost your brother but glad that when the end came it was nice and peaceful for him.
I lost a good friend to pancreatic cancer last year and another to gall bladder cancer. Neither of them had much time from dx to their passing on. I miss them both so much but it put my own cancer into perspective. Don't get me wrong ladies, i'd really rather i didn't have it, but it's treatable and that gives me time.
Your brother knew he was loved Jacqui and in the end that's all we have and all that matters. Take good care of yourself.
Louisa x
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23-01-2013
12:00
Iwas given Tamoxifen when first diagnosed but this was changed to Letrozole as soon as my bone mets were discovered shortly afterwards, so i don't know if the Tamoxofen would have worked. Been on Letrozole since August 2011 and all sans so far have showed the mets to be stable. I know it will stop working at some point but feeling ok though a bit sore sometimes. No new pains.
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23-01-2013
11:49
And so sorry for my careless typing! I need to slow down. X
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23-01-2013
11:40
Val, i hope you maintain your wieght and feel better soon. You were the first person to reply to me when i first caam on here all lost and bewildered. You are very special and although i haven't been on here much since the changes to the forum, i alwayd take an interest in your posts.
Ladies i read allthe posts about how your partners react to the cancer. My man will not talk about it and although i do understand it can get lonely as i have two sons who won't talk about it either. Sometimes i wonder if they care or take it seriously. I know in my heart that they do, but as women we talk about everything, don't er?, so the deafening silence is so alien to me.
You ladies who keep on working are brilliant! I tried to go back but was so exhausted that i realised pretty quickly that it was not for me, so i was medically retired. With my small pension an DLA on top, i'm ok -ish! Life is so different now though and i really need to take myself in hand and start doing something to fill my days. The seven months since i retires have been a bit boring, if truth be told.
Hugs to all of you
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22-01-2013
10:16
Hey JulieD know . I had just begun to use these forums and really enjoyed them......and then the changes just threw me completely and scared me away! But i have missed the advice and the comfort it brought me to talk to you all. It's amazing how skewed your view of the world can be when you are depressed, isn't it? Then the fog clears and life is good again....till the next bloody time! My pj day has been good and i needed it as i have a few things to do tomorrow. Keep well.
Louisa x
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22-01-2013
06:30
Dzyre. You had a lucky escape and that man wasn't good enough for you. Look to the future where there will be a better and kinder man waiting for you,
Louisa x
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22-01-2013
06:29
Hello everyone. I haven't been on in here in ages and i don't know why because reading all your stories, experiences and opinionsmaked me feel less lonely. I was diagnosed with primary bc in july 2010 and then secondaries ( bone mets-ribs, spine, pelvis, skull) about six weeks later. On Letrozole and Zometa and well but a bit sore sometimes and about twenty years older than i was eighteen monthes ago, if you know what i mea!, But well and i am grateful for that. Had a very busy day yesterday so resting in bed today ( any excuse!)
You have all been through so much more than me, although i know that will change. I think you are all wonderful.
Something that helped me was a stress management and relaxation course i attended at Maggies in Edinburgh. I did really well as long as i practised all my techniques. Arouf Christmas it all came crashing down around me and i just didn't want to be here. Went to gp and got my anti depressants upped and started my relaxation techniques again. I am now in much better spirits and have begun reading the posts on here again. I think this time i'll hang around!
Hugs and courage to you all x
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30-12-2012
05:29
Been on Letrazole for about fifteen months. Have had a few side sffects - sore wrist, dry mouth and skin and hot flushes. The symptoms seem to come and go but are better than the alternative so try not to moan too much. I have thick hair and felt that i did start to "shed" a little after three/four months, but back to normal thickness now.
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