My story
Comments
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I'm not that flash with IT either so you are not alone. If you click on anyone's "pink" name that immediately takes you to that person's blog site.Under their profile pic there is "send a message"and by clicking on that you are then able to type that person a private message.If you are now reading this then scroll down to the bottom of this page and you'll see on the left hand side(near the pink lady) the words"about us".Now look under that for "contact us"and click it. You can send a message to Daina(she runs the online)and ask her for help to join the secondary bc group.I'm not sure myself how to join that group.If you want to read the latest blogs (and you are reading this now) scroll to top right corner of this page and you'll see,in green,+network home.Click it and it takes you to recent blogs from women on this network. I fumbled my way around at first but got the hang of it- still stuff to learn though.Don't know if any of this has helped you or confused you! In anycase,Daina is your girl to contact. Good luck.
Tonya xx
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Hi Donna,
Great that Tracy could help you with regards to the joining the groups. Women Living with secondary Breast cancer is the more active site as apposed to Secondary Breast Cancer group. People use this site in different ways, most of the people who replied to your blog are people with secondary breast cancer . Some people do all their blogging just the way you are doing it now to open it up to people who dont have SBC. I know there is also a more active private Face Book group for secondary BC,you can apply to be a member once you are member of facebook. I dont belong to it as I dont do facebook. I just come on line mostly these days when someone sends a private message or I am on the site to keep updated. Basically if you have a question or want to share something just blog away either on your blogg or reply to others, or do your own blogg under Women living with Secondary Breast Cancer.
Take Care
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Hi Donna, not a legend, just know how important it was to me to feel like I wasn't alone and somebody understood how I felt. Hope all is going along okay for you. Wishing you all the best.
Take care. Tracey xx
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Celeste-that's truly amazing! So glad you got some relief!
It weird, isn't it..whilst we know that the more bone scans and cat scans we have to check on status of cancer in the bones gives us get more potentially dangerous radiation, if the oncologist tells us we need to wait longer for next check; it's good news and bad news at once!
Hopefully no more will be found when I eventually get there, but it's always the way that I "imagine" little pains in other spots while waiting. Does anyone else experience this?
Cheers to all-this is such a wonderfully supportive forum!0 -
Thats wonderful Celeste! I am soooooo happy for you. I am into the second week. Have only two weeks treatment. My pain presented in my sternum initially. That was the first and only symptom I presented with and this was the reason I had the bone scan which showed up some hot spots in my sternum some ribs lumbar and sacral spine and pelvis. Scattered spots. Not widespread. Fortunately all my organs are clear. Praise God! I am on Targin 5mgs twice a day (morphine derivitive) for relief with the sternum pain but have reduced that now to once a day because I want to get back to work on Thurs of this week. have been off for 6 weeks since the diagnosis and NEED to get back to work . I guess the pain medication Ihave been on is masking the radium effects but the oncologist (radiation one) said to keep taking them because the full effects of the radium may not kick in until a week after due to the accumalative nature of the doses. Heres hoping he is right. Thank you so much for your message. I just looooooove this site. So many brave inspirational supportive women. I am so happy to be part of it. I am still trying to work it out but am slowly getting there. Take care. Have a great day Celeste. Stay in touch. I love your profile picture and that beautiful scarf. x
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Hi Julie
Yes the panicking at night thing happens a lot with me. Sorry about your accidents: glad that nothing untoward happened and your bones didn't deteriorate more. Hope the pain stays away.
You're right, we do need to weigh up positives with negatives. So many of us survive through this and the treatments have moved along so much.
Take care
Regards
Kathleen0 -
Hi Julie
Yes the panicking at night thing happens a lot with me. Sorry about your accidents: glad that nothing untoward happened and your bones didn't deteriorate more. Hope the pain stays away.
You're right, we do need to weigh up positives with negatives. So many of us survive through this and the treatments have moved along so much.
Take care
Regards
Kathleen0 -
Dear Donna
I am glad you're here on the site, as actually your mention of going back to work has hit a chord with me. I reckon I have just been giving in to the side effects and long term effects for long enough. I have made one positive change-moving closer to family. Going to visit them always gives me a lift-the children have so much positivity and life.
Over the next few weeks I'm going to make more of a concerted effort to carry on without dwelling on things I can't do.
I'm very glad your mets has not been found in any organs. That's a real blessing. Keep going and stay positive: and thanks for giving ME some inspiration! I love this site too- the best support!
Take care
Love from
Kathleen x0 -
Hello everyone,
I have not bloged for a while. Have been busy starting a new job which I love. Manifestation of positivity brings positive things. This job landed on my lap. God has been so good to me. 5 mins from home and working with a great team. 2 more years until retirement and I could not have wished to see out 35 years of nursing in aged care in a better spot! What a great way to finish a crap year!! Never mind - I have been well thank God. Have been on Femera since diagnosis in the middle of Sept. Had my two weeks of radium for # sternum which was the initial painful spot that forced me to go to the Dr. Am having Denosamab injection monthly (2nd one this Wed) and go back and see my oncologist in a month. Blood tests before hand to see what the ole cancer markers are doing. I had a melt down this morning. Over the last few days of a night when I lie on my left side I get some pain in my left hip area. Not severe but discomfort. I have never had that before. It was not one of my "hot spots" with the boney mets. The right side was. Of course I thought "God this has spread!!" Then of course other areas felt worse than they were most probably I was thinking that rather than it being an actuality. This disease is so incidious. The deamon thoughts come into your head when the above happens and I try soooooo hard to think of positive things to get myself out of it. Most times i am very good at it but sometimes it takes a little longer. I guess that is OK. I am sure you have all felt the above feelings and we just have to be kind to ourselves and see it as normal. I have been for a bike ride today and a swim and this afternoon I fee back on track. Just wanted to connect with you guys because that makes me feel happy and very positive. Your all inspirational women and I draw from that. I have to get on here more often and say hello. Does not have to be for support just to connect and say Hi guys hope your all well and having fun. A dear friend who has had a bad year with illness (not cancer) sent me the following message today on an email. I would like to leave you on this note.
"Each day gives us another chance to dream
Look to the sky and never stop believing"
God bless and stay well xxxx
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Hi Donna,
Congratulations on your new job. It is great to work if it generates pleasure,
I still work as it fits into my wellness plan. When I feel things are out balance I pull back. I find it requires regular fine tuning.
New pains can scare us but it is important to be vigilent and ask ourselves what this pain could be. Normally a new tumour worsens steadily and doesnt go up and down in nature. If there is concern even after few days it is better to get a blood test done and see GP rather than be overwhelmed with the unknown. I have done this a few times and once I was right. This was good as my liver lesions got treated while still smaller rather than 7 weeks later and lot bigger.
I have been on Femara for almost 12 months and it can give bone pain as side effect in different areas of body. Also Denosamab has side effect of bone pain.
If I dont stay on my alkaline diet I get bone pain that can cause questions for me but I tighten up my regime for a few days and they settle down. I have learned over time how to test out new pains. It is good to pay attention to these pains.
Great to see you experiencing the benefit of exercise, I get great benefit from regular exercise. I like walking and cycling too. I recently rode in Ride to conquer cancer (200km) and when I started out training 8 weeks earlier I struggled to do 10 km. Now I endevour to ride and walk regularly.
Enjoyed reading your article recently in Inside story.
Take Care
Donna
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Hi Donna,
Congratulations on your new job. It is great to work if it generates pleasure,
I still work as it fits into my wellness plan. When I feel things are out balance I pull back. I find it requires regular fine tuning.
New pains can scare us but it is important to be vigilent and ask ourselves what this pain could be. Normally a new tumour worsens steadily and doesnt go up and down in nature. If there is concern even after few days it is better to get a blood test done and see GP rather than be overwhelmed with the unknown. I have done this a few times and once I was right. This was good as my liver lesions got treated while still smaller rather than 7 weeks later and lot bigger.
I have been on Femara for almost 12 months and it can give bone pain as side effect in different areas of body. Also Denosamab has side effect of bone pain.
If I dont stay on my alkaline diet I get bone pain that can cause questions for me but I tighten up my regime for a few days and they settle down. I have learned over time how to test out new pains. It is good to pay attention to these pains.
Great to see you experiencing the benefit of exercise, I get great benefit from regular exercise. I like walking and cycling too. I recently rode in Ride to conquer cancer (200km) and when I started out training 8 weeks earlier I struggled to do 10 km. Now I endevour to ride and walk regularly.
Enjoyed reading your article recently in Inside story.
Take Care
Donna
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Hi Anne Maree,
Lovely to hear from you. Glad you are feeling well and enjoying your exercise. Fantastic effort with your 200km ride. Amazing effort!! Well done. Thanks for the tip re the pain that you may feel from the Femera and the denosamab. That made me feel a little better and alleviated some of those worries when the "deamons" get in your head!!! I hate those bloody demons!
Stay well and have a wonderfully happy and peaceful Xmas with your loved ones and Ihope and pray that 2013 is a year of great things for you and most importantly continued good health
Love and light,
Donnax
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