Doing really well but it's never far from the surface
Nadi
Member Posts: 619 ✭
LIfe is good at the moment. It has been 2 and a half years since my diagnosis. Surgery, chemo, radiation and Herceptin are a just a memory. I am over my latest bout of fatigue thanks to taking Vit B and magnesium. Hot flushes at their peak again, but I now just think of them as BAU - business as usual. Work is great. I am also booking the next trip on my bucket list as we never know what the future may bring so why wait - off to Egypt in October/November. So all good.
Except, on the weekend, I had dinner with a friend who I hadn't seen for about six months. She asked me about my 'prognosis'. I was taken aback. I don't think like that. I think I'm cured. I said as much. She pressed and asked if I still get checked out, and if so how often. I kept trying to be reassuring after a few more specific questions that I was fine, and that I expect to continue to be fine, and told her in a polite a way as I could that I don't really like to talk about it. But ever since that dinner, I have felt rattled. I've even had two dreams about my cancer returning since that conversation.
I just find it strange that although I am truly trying to put cancer behind me, it doesn't take much for my fears to be stirred up all over again. I guess that too will get better in time.
I also am finding it uncomfortable to comment on posts to the network. I come on to the BCNA online network a couple of times a week. I look forward to hearing from the wonderful women who I have come to know since my time here, but for some reason now I have finished active treatment I don't feel qualified to comment or offer advice. And so while I read a lot, I don't say as much as I used to. But I would still like to support women and give back as I have found incredible support here since I joined. The amazing women here have really got me through some tough times. So even though I don't say it these days, thanks again ladies. You're truly awesome. And for the newbies here, this network is amazing and I wish you all the best for whatever journey you are on.
Finally, the recent robust conversation regarding drugs added to the PBS that I personally read as attacks on BCNA have also really rattled me. I understand that people are disappointed with decisions made by government. I understand that anger comes from fear, frustration and hurt. And so I try to look past the anger and see the hurt, fear and frustration some of us are feeling towards governments, bureaucracies and big pharma. These women are fighting for their lives and I am truly sorry for that. This network should be a place where we can express our anger, our fears, our frustration and the hurt we are feeling. We are here to support one another through good times and bad. But no matter how horrible we are feeling, we should be respectful towards others. Let's curse at the sky, let's yell at the decision makers, but let's support those who support us. We can still say that we are disappointed, we can emphasise that we hope more can be achieved in the future, and that this issue should remain a priority, and above all else we can disagree with one another, but we should always do it with respect.
To all, wishing you the best
Nadine
Except, on the weekend, I had dinner with a friend who I hadn't seen for about six months. She asked me about my 'prognosis'. I was taken aback. I don't think like that. I think I'm cured. I said as much. She pressed and asked if I still get checked out, and if so how often. I kept trying to be reassuring after a few more specific questions that I was fine, and that I expect to continue to be fine, and told her in a polite a way as I could that I don't really like to talk about it. But ever since that dinner, I have felt rattled. I've even had two dreams about my cancer returning since that conversation.
I just find it strange that although I am truly trying to put cancer behind me, it doesn't take much for my fears to be stirred up all over again. I guess that too will get better in time.
I also am finding it uncomfortable to comment on posts to the network. I come on to the BCNA online network a couple of times a week. I look forward to hearing from the wonderful women who I have come to know since my time here, but for some reason now I have finished active treatment I don't feel qualified to comment or offer advice. And so while I read a lot, I don't say as much as I used to. But I would still like to support women and give back as I have found incredible support here since I joined. The amazing women here have really got me through some tough times. So even though I don't say it these days, thanks again ladies. You're truly awesome. And for the newbies here, this network is amazing and I wish you all the best for whatever journey you are on.
Finally, the recent robust conversation regarding drugs added to the PBS that I personally read as attacks on BCNA have also really rattled me. I understand that people are disappointed with decisions made by government. I understand that anger comes from fear, frustration and hurt. And so I try to look past the anger and see the hurt, fear and frustration some of us are feeling towards governments, bureaucracies and big pharma. These women are fighting for their lives and I am truly sorry for that. This network should be a place where we can express our anger, our fears, our frustration and the hurt we are feeling. We are here to support one another through good times and bad. But no matter how horrible we are feeling, we should be respectful towards others. Let's curse at the sky, let's yell at the decision makers, but let's support those who support us. We can still say that we are disappointed, we can emphasise that we hope more can be achieved in the future, and that this issue should remain a priority, and above all else we can disagree with one another, but we should always do it with respect.
To all, wishing you the best
Nadine
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Comments
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Totally understand where you're coming from - I'm still in the chemo phase of treatment but often can't find the words now to offer comfort or advice. And agree wholeheartedly with your comments on the PBS post - this is a support site not a battleground.
I hope your fears settle down again - I'm sure your friend didn't realise she was stirring things up - she probably thought she was being caring, or maybe she has something about her own health on her mind. Take care - Egypt sounds so exciting!2 -
Glad to hear you are still doing ok Nadine. If we survivors don't report in every so often it will end up being a one sided mets forum. We need to speak up and tell those beginning their journeys that there is hope and there are many of us still enjoying life as survivors.
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Hi Nadine. Great post. I find it very easy to get emotionally thrown so I can sympathise with you. I really value the voice of longer term members. I'm finding things quite difficult at the beginning of my 'survivorship' and, as with everyone else, it's so helpful to hear from those further down the track.
I found the aggro in that post, and other recent contentious ones to be highly distressing. Not kidding, makes me sick to the stomach. I heartily agree with your comments on the subject.
I trust over the next few days you'll return to feeling more settled. I agree with @Sister. I find it's often helpful to remember in situations like this, that what people say is mostly about them. Take care, K xox1 -
Hello @kmakm and @Nadi, I agree with the comments made by both of you and often wonder why BCNA does not step in and stop some of the negativity a bit quicker as they are always watching. Closing the posts is one thing but maybe they should remove them so ladies do not fall across them and get distressed. My friend has been quite upset by some things which are said and being a bit on the tender side it is a blessing she is still here on this earth. BCNA is a great organisation and they do all they can but the power of the dollar can stand in anyone's way, can't it ? Do stay around, Nadine, as we all like to keep track of ladies we've read and your just being with us gives confidence. You can help as you have been there and know the feelings ladies go through at the vary stages. Best wishes Anne1
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Hey @nadi , questions about your mortality are a bit rude. That, 'What's your prognosis" question is the one that will always bring my horns out. What are people thinking when they ask that? Anyone who is close to you will know you well enough to understand you will share information about your likelihood of survival without being prompted when it suits you, it is appropriate and the other person needs to know. Anyone who is not part of that inner circle has no business asking, and is certainly out of line if they persist with the line of questioning after you have tried to deflect them.
I'm naturally combative, which I understand you are not. In the past when that situation arises I have turned it around and asked, 'When are you expecting to die?' I've also gone one step further and replied 'Better than yours if you don't learn some manners.' People often mean well, but don't consider how their comments feel for those on the sharp edge of their curiosity.
I'm sorry you were distressed about that particular conversation. I am always conscious that anyone, anywhere in the world, can see the discussions in the public forum. To see such conflicting, and occasionally unpleasant, messages was difficult however censorship is a very dangerous road for any organisation to go down. We are warned when we start to participate,via the Community Guidelines, that we may see things that upset us, or that we don't agree with. The best advice is to not involve yourself and scroll on. If you do inadvertently find yourself in the midst of a thread that turns toxic, turn off the notifications for that item and let nature take it's course. Thankfully it doesn't happen that often.
On a personal level, I'm so pleased you are getting back on your feet and your life is moving on. You are right, the shadow is always there, but hopefully you won't see it too often if you keep your face turned towards the light. Mxx
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Hi all,
We definitely understand where you are coming from @BlackWidow as when to intervene and how far to intervene is something we often struggle with. As @Zoffiel has stated, censorship can be fraught and we are mindful of striking a balance between not being overly interfering but also ensuring the community is a safe and supportive environment for all members. We had a discussion regarding this with some of our group leaders and frequent contributors a few months back and it was agreed that we should let the community resolve issues wherever possible but step in to stop attacking or harassment of members. 99% of the time the community does a wonderful job of supporting each other and managing issues that arise but sometimes it requires us to become involved and we don't take this decision lightly. We aren't always online so sometimes threads may become challenging without our knowledge. We therefore encourage members to report any posts that make them feel uncomfortable and we will then follow up. Whenever we have a challenging situation arise we review the situation and discuss any changes we can make to how we respond to similar situations in the future. We will be looking at the option of deleting posts that do not meet community guidelines as a part of this discussion.
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@Nadi - completely agree with everything said - this place has been a huge support for me for the last 6 months and it upsets me to see women who have been a support to me get bullied when they try and reach out to support others. I understand that there are a lot of scared and distressed people on here but they should not take it out on other scared and distressed people. I have a pretty thick skin so what people say to me doesn't really bother me and I can stick up for myself but its upsetting when people who are more fragile and cant handle the attacks well get set upon. Thank god that the majority of women on here are beyond fabulous and supportive!!1
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Hey @Nadi,
Good to hear from you. It's weird how some people engage their mouth before their brain. I had an ambulance at my place few months ago to collect someone who had come off their horse. She recognised me from work and asked how I was going. I replied that I was good and that thankfully all my active treatment was finished. The response I got was "So you're all in remission now?" Well, I had never thought of it that way and had to decide whether or not to burst into to tears or say something incredibly rude and shouty with numerous swear words.
I hope you do feel comfortable to join the conversations again. You are most definitely qualified to offer advice and I think it's very important for the new people to have inspiration from those who have gone before and are back out kicking goals in their life no matter how many years later it is.
xoxoxo
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Darn - so sorry your buddy made you feel upset & rattled over her comments & persistence in getting an answer that she 'wanted' rather than what you were prepared to say .... she obviously isn't very good at reading a person's 'mood' - or would have SHUT UP earlier!
Yes, many of us were upset & a tad angry over the tone of a few of the threads started by the one person who was very combative .... it just wasn't necessary & was SO disruptive & divisive!
VERY interesting @kezmusc .... I'd never really thought of us as 'being in remission' like some other cancers - but I suppose we are! I've never really considered my husband as being 'in remission either' tho he had his stomach cancer surgery & chemo back in 2010 - I've always considered us having had our cancer removed, and then being 'treated for cancer' afterwards as a 'mop up' exercise!
I guess we'll always get those 'And tell me, how are you REALLY??' questions - even after you've just told them you're going 'OK'! grrr
Yes, let's help each other and support each other thru this shitty road that we are on .... onwards and upwards Xxx
All the best to those who are doing it tough just now! Hang in there - you can do it! xx2 -
Hi @Nadi - like @kmakm I'm so grateful for the advice and support of everyone on this forum and particularly those who have gone through it all and can speak from all that experience.
I hope that it turn, everyone who has commented here has also given you some support and reassurance.
Please keep checking in every now and then like you've been doing and I'm sure you'll find that there will be times when there's a discussion or a question that you will just feel is right for you to comment on or contribute to - in fact, when you're less prolific and suddenly find a discussion that you're particularly drawn to participating in, your contributions will be that much more amazing and worthwhile because it will be something that's really close to your heart.
Wishing you all the best,
Yvette xxx3 -
@kezmusc and @arpie i'm guessing most peoples interpretation of the meaning of remission is slightly off!
Here is a definition I foundRemission
A disappearance of a disease as a result of treatment. Complete remission means that all disease is gone. Partial remission means that the disease is significantly improved by treatment, but residual traces of the disease are still present.Mentioned in: Behcet's Syndrome, Choriocarcinoma, Leukemias, Chronic, Pulmonary Alveolar Proteinosis
I think when people usually use the word (loosely)their idea is "partial remission " (as defined by the above ) in other words they don't know what their talking about !
Not sure I've explained my thoughts properly !!
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Agreed, it usually means the disease is controlled, abated, may even be on the way to being cured but still evident. That's why many use NED, no evidence of disease, instead.
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I think I get what you mean @tigerbeth. When people say remission they actually mean partial remission, as defined in your post. Accurately, when we say remission it means the disease is gone, but that's not the broadly understood inference of that word. So, as @AFraser said, it's probably clearer, and more comfortable, if we say NED. I know I prefer it.
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