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Lucky_Gal
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since
26-04-2013
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30-07-2013
02:47
Hey Mrs Mc - no need to apologise. its hard to stay positive all the time. Especially so when hit with bad news and scary treatments!
I had a hard time switching off to go to sleep last night and am sitting on the sofa like a zombie at the moment. Have my second rad at 4.15 today so am just resting and staying chilled. I get badly out of breath doing anything and fight to control it when I've sat down which is quite scary. I guess it's all the stress my body is under. I will just potter about and take things easy. I was pleased that the radiotherapy staff were so kind and helpful to me yesterday, promising to monitor and care for me and for me not to worry too much. Such a help when you're worried and low. 4 more to go!
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29-07-2013
04:40
Thanks for all your kind words of support. I had my first dose and am now sitting on my sofa feeling calm and hopeful. I don't think it's about having a positive attitude all the time as that is hard to maintain. I do believe in taking things a day at a time from now on in and hope for the best. Will keep updating as the experiences we face help each other and I need l your love and support xxx
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28-07-2013
11:57
Well what a couple of weeks I've had. Woke up a couple of weeks ago on a Thursday morning and I was very sick, then my speech started to slur, and I felt awful. When I poked my tongue out it pointed to the right side and I couldn't eat as my tongue felt like an alien in my head! Rushed to doctors then referred to hospital where I had a CT scan and was told it was a frontal migraine and to go home and rest. After the weekend there was no improvement so was admitted to my acute oncology ward in my hospital for further tests. After a CT scan with contrast die and a MRI scan which I had to be heavily sedated for being claustrophobic, and a whole week of waiting and wondering they finally found a very small met on the lower half of my skull pushing on my nerves which control my tongue. It is called Hypoglossal nerve palsy. I was put on Dexamethasone to control the swelling and sickness and sent home. Plan is to start 5 days of radiotherapy to my lower skull, starting this Monday.
The Consultant said my tongue may or may not go back to normal, it will take time and I am gradually getting used to it and managing to eat alright. Soft things like baked potatoes are my favourite. I am also about 80% deaf in the ear on the same side so once I have radiotherapy I am hoping it will help that too. It's been frightening and I have had to fight severe negative thoughts which I am going to ask my doctor to help with on Monday. I know the side effects are tiredness and headaches and I am hoping the steroids will help wih any headaches I get. I just have to get on with things and not fall apart and to do this. I take it a day at a time now. I think that's all you can do. I have a husband and family that need me and I am going to fight this all I can with all the strength I can muster.
Wish me luck xx
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13-06-2013
09:28
I am joining you all as I had Denosumab on Monday 10th June. I have muscle aches so far and have had to up my pain relief. My oncologist at the QA in Portsmouth told me that they have only just started using this drug. I hope it works well for me.
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13-06-2013
09:08
Lemongrove, You don't know me, I'm a 'newbie' but I have been reading some of your posts and I can honestly say, I have nothing but admiration for you. After reading about what you have gone through, it has quite frankly left me in total amazement. How you have to sometimes fight to get the best treatment and still come back on here to stand up for our rights and tell people how it is in the real world. I wish you well with your continued recovery.
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13-06-2013
08:39
Thanks Belinda and Ali, will keep posting! And perservere through things.
keep Smiling
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12-06-2013
08:39
Just an Update... I had my treatment started Monday, I had a Denosumab injection, was given calcium tablets to take once a day and will be starting Letrozole in a couple of weeks too. It's been two weeks since the radiotherapy to my spine and I am in a lot of pain and it feels worse not better. I am feeling a bit down today but will pick myself up and carry on. I was given Zomorph and took one last night but it made my skin crawl and I itched all over so maybe I am allergic and will ask my nurse when I see her tomorrow. I have Oramorph and Diclofenic and am ok for now. My back feels so sore and the hots sweats from that Zoladex injection are annoying me no end grr!
Sarah x
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12-06-2013
08:31
Hi there, Sorry to hear about your latest diagnosis. I hope the treatment you have helps and we are all here for you. Thinking of you, take care.
Sarah x
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12-06-2013
08:23
It's lucky we can give each other support in this forum, as it seems we won't get it anywhere else.
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12-06-2013
08:18
I am sad to find out since having a secondary breast cancer diagnosis, that instead of us all being cared for and looked after and given all the best treatments that are available, some of us are being overlooked and it seems like the funding for certain things is being withheld, which is alarming and unfair. I only hope this changes in the future and as more of us are surviving we can stand up for ourselves and stop this happening.
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12-06-2013
08:04
Hi Margaret, Sorry to hear about your problems and not having faith in your treatment. I have had Tamoxifen and now I am on Zoladex and will be starting Letrozole too. I don't like the sweats and hot flushes either. I have learnt to breathe through them when they come on and I also have an electric fan and ice cold drinks to help. I am getting a chillo pillow soon, which can help with night sweats. Unfortunately, most hormone treatments, will cause menopause symptoms and of course it's your choice whether to have them or not. I hope your oncologist can help you with some other treatments that might be available to you. Take care of yourself.
Sarah xx
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10-06-2013
10:11
Hi Pumpkinsue, I echo what the other ladies have said and am sorry your oncologist was so unhelpful to you. When I went to see my Oncologist I tried to write a list of everything I needed to ask and armed myself with some examples of treatments ladies on here have had and If I am suitable for any of them. I never even heard of Cyberknife until I signed up on here! I hope you get all the treatment you can to help and The Royal Marsden is possibly one of the best places you can get it. I get a treatment plan today so I'm in for a long chat with my Onc at the Hospital and am nervous but determined.
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09-06-2013
04:40
That was great and inspiring. I try to have a good laugh at something every day and have particular websites bookmarked that I know will have something hilariously funny on it. Laughter is my favourite medicene. Thanks for posting.
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09-06-2013
03:55
I just completed this survey and ticked NO to everything. It won't help any of us in the situation we are in. We are fighting for our lives, literally FIGHTING so excuse us if we don't care about our 'body confidence'
I went to a support day at my local hospital with guest speakers and some helpful hints from BC nurses and then I get a stupid survey letter from them in the post asking me if I felt more Body confident now and If I felt it helped me on an emotional level. Needless to say that went in the bin.
I was planning to have a reconstruction a month before my secondary diagnosis. Now I don't want one and just want to LIVE..... even if I have to carry this heavy prothesis around forever.
this has just about made my blood boil. All those issues Lemongrove has posted too are far more important. I would like a focus on ''Coping with A Secondary Diagnosis and Help Controlling Side Effects'' Or ''Getting the best advice possible on treating Secondary Breast Cancer and where to go for it.''.
Not ''Body Confidence'' as I am NOT going dancing, shopping, skating or bowling or anywhere in public where my body shape might be an issue while I am curled on my bed in pain and vomiting whilst taking Morphine and a million other pills and worrying whether I am going to see Christmas.
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09-06-2013
03:04
Thanks for all your helpful responses ladies. I guess some things work well for some people and not so well for others.
It's one thing I will have a good chat with my Oncologist about.
In reply to Gordok 1
My Radiotherapy consultant and Oncologist BOTH told me my periods would stop and were surprised when mine didn't and then said that sometimes they don't stop but the Tamoxifen would still work.
After I was told the cancer had returned, the first thing I asked was why didn't the Tamoxifen work? The Oncologist said that sometimes, it doesn't work and it was sadly just one of those things in my particular case.
In reply to Angelfalls
I agree with you and I am going to ask about that as soon as possible.
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07-06-2013
11:49
Hi Elliedog, I was just reading your thread here and just wanted to say that this forum has helped me enormously with the inspiring stories, help with treatment and just general good wishes and friendship. It's remarkable that so many women are surviving despite the odds and I think the more you fight it the better you feel. I was feeling lost and now I know I can come here and someone in a similar position will cheer me up and shake me out of the despair. Keep being positive even when you are feeling down. I wish you all the best xx
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07-06-2013
11:39
Hi Nythejan,
I have secondaries to my spine and have just had radiotherapy and am going to start Bisphosphates next week. good luck with scan results. I know how you feel and wish you well. Keep smiling xx
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07-06-2013
11:35
I had to have a Zoladex injection after Tamoxifen didn't work for me. i was told it would stop my periods and put me into menopause. this is what I was told with the Tamoxifen and it didn't work and I still had periods the whole time I was on it. Well, after two weeks I started a period again and now I am worried and annoyed this won't work either. The doctor never said I would bleed on it but when I rang the breat care nurses they said it was perfectly normal for the first injection and possibly the second. Why wasn't I warned about this, talk about panic and I have rotten period pains to contend with now along with everything else. I think I should think about having my ovaries removed, what do you all feel about this?
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07-06-2013
11:27
Thanks Jacqui, I will definitely have a look at the thread you mentioned.
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07-06-2013
11:25
Hi Andie, I had a bloated, distended stomach for a few days after radiotherapy on my secondary bone mets and was going to try to help and tell you not to worry. I am so sorry about your prognosis and I am sure the palliative care team will help you in every way possible. My thoughts, love and prayers go to you and your family. xx
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