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Living Well With Cancer Conference II

24242
Posts: 1417
Joined: Mar 2001

Just wanted to let you know that I once again was honoured to be part of such an incredible group of human beings. This conference was made up of 70% patient/family member/spouce and 30% medical community/national and provincial political appointees. The first conference was the opposite 70% were the medical community. I was much more comfortable in this setting even though a great portion of the patients and family members were also medical community members. This one thing has changed the face of this disease, inclusion of all, even medical professionals. Interesting how many doctors and nurses were there because they were cancer survivors. Too bad this disease has a face at all.
I can't tell you all, how much I truly felt like I belonged, being around so many people such as myself. I too found it interesting the things that mean the most to me, seemed to as well with the majority of the people who attended. The issues I wanted to hammer home seemed to be those of the entire cancer group. We broke into 12 work groups and I was amazed that all the concerns raised seemed to be raised in all the work groups.
Once the report is issued and the recommendations proposed to those in powerful places, I too will bring our recommendations to you. This conference was based mostly on the consept of patients having to navigate the medical system in their journey and how can we make that easier in already difficult times. I will get a report too and it will have recommendations that were made. This is the second time that I have been involved and for once, I feel like I am apart of change, rather than just a survivor of cancer.
One of the most amazing people who spoke was an elderly British woman who is dealing with end of life issues. She came and spoke even though it was very difficult for her. She raised one of my biggest concerns, going to this conference and I was just glad I didn't have to be the one to bring it up. This woman spoke about her life and her
reoccurance, after 15 years of being cancer free. She spoke about having to tell her family again and facing her old fears, she had left so far behind. She was led to believe she was cured and vertually left to live her life, the last 8-10 years. She didn't know that Breast Cancer could return as bone cancer. She ignored symptoms. she just didn't know them. She wished that they never used the word CURE. She asked what it really ment anyways? We were talking about cells in our bodies even healthy people have them they say. Seems just to be a word, the medical community really like and so do allot of survivors. Seems to mean to those that the Cure gives them power over the cancer/cancers. I too wonder, what they really cure? Me, I have many diseases from my treatments and others have cells left to grow and come back as some other form of cancer. I honestly believe after reading the thousands of posts I have, going through all 6621 posts from this site as well, I see that women find a false sense of security in the word and it worries me.
Some doctors are beginning to think that I am loosing it because I don't find comfort in the words they use to address my health issues. My former GP would tell me I must be anxious there for I needed antidepressants. I haven't posted lately about my health, just don't know what to say anymore, hate being a downer all the time so just don't go on about it. I am learning that maybe I will have to live with it and it doesn't sit well with me. I have had to change so many things in my life I hate the thought of loosing some more of me along the way.
Well, my doctor is sending me to phsycologist not such a bad thing, I say, but some how wonder what anti depressants are going to do for all this pain. I still have a pain in my side they say is IBS never had it before even though I have had IBS. Now all old pain back and I am sure this is because it all has been going on so long. Now I can't deny I am depressed who wouldn't be after all this time. So now go the mind route cause they can't find anything physical. I am prepaired to do anything at this point, one only hopes something good will come of it, nothing else has made the difference yet.
After all these months I don't doubt doctors getting sick of me. I haven't shut up yet and I am at it again. I can't help it if I am in pain and need to find out what is the problem rather than just masking it. Last time they found all these diseases. Now I am back on all my medication and one can only hope it is all settled down before they start affecting this tender stomach of mine. Some are hard on the stomach something I found out last time. Oh well the hunt for relief still goes on. Being at this conference made me realize that there are others out there with the same issues and they too feel like the forgotten ones, since we haven't felt the magic of the cure and feel like the doctors think we should.
I have to wonder sometimes if the word Cure isn't a hurdle for many people, at work or with the medical community? I myself will never stop trying to find that quality of life that everyone so well diserves. Just to bad so many have to fight so hard for it. How about the ones that don't have the energy or ware withall to do so is what I always think about? Fine for those who can stick up for themselves and fight for what they need. Many can't, those are who we need to worry about.
More later date,
Be Good to yourselves,
Tara

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

Tara: good to hear about the conference, but sorry to hear that you are still grappling os much with the fear associated with cancer. I have been fortunate cos I have always known that there is no such thing as a complete 'cure' of cancer, only the hope that all the cancerous cells have been eliminated thru surgery or radiation or chemo. My cancer had spread somewhat, but at the end of the treatments I just decided there was absolutely no point in worrying whether every ache and pain might be the cancer coming back. I decided I would not keep feeling around for lumps, kept reminding myself that just because I had cancer didnt mean I might not also get gout! and would leave the worrying to my doctor when I went for my six monthly checkups. As for the effects of the treatments, one of which is quite painful, I just decided that if that was the worst I was left with then I would just have to learn to live with it. I agree this is all very tough, and maybe it is easier for me cos I simply don't seem to have any fear, so I do hope that talking things over with a psychaiatrist can help you come to terms with what is happening. I will look forward to hearing how you are getting on. Love Susan

ktinkey
Posts: 173
Joined: Mar 2001

Hi Tara,

Thank you for the update and thank you for being an advocate for all of us.

I'm so sorry you are still having health challenges. Don't give up, someone will listen and help. You continue in my prayers. My IBS comes and goes. I'll have good times, then I'll have very painful weeks. Wish I knew exactly what triggers it, but I can't pinpoint anything I do different. Good luck. Pain has a cause. I don't believe it is all in your head. Keep your chin up and keep fighting. I hope the antidepressants work. They are finding more and more uses for them everyday, espcially the seratonian uptakes (?). You can tell I've been away from the pharmacy too long now. Can't remember the little I used to know.

God Bless,
Kathy

pkay
Posts: 19
Joined: Jan 2002

Tara,
I'm happy for you having the opportunity to be able to speak to such a large group regarding BC. Thank you for being an advocate for all of us. My husband says I'm cured! Isn't that something, out of all the highest degreed, smart scientists that go to work everyday in their nice cold labs that have been committed on working on a cure for years, my non-degreed working cowboy, chaps and all, has found a cure!
Just thought I would add a little humor there. He's serious though, bless his heart. I would love to know I was cured. I have prayed to be healed, for He is the only one I can count on right now. As they say, God does the healing, but the devil talks us out of it! If you do decide to go with anti-depressants, make sure you read the label well. My little girl is still praying for you. I told you she would for at least a year! Remember Tara, that God has orchestrated our life from our first breath, only He knows what we can endure. Keep up your great work speaking. It surely is good for the soul.
hugs always,
Penny Kay

inkblot
Posts: 705
Joined: Jul 2001

Hi All:

This is going to be a bit long, so be prepared.

Tara, I'm so happy that you attended the conference. There are so many and varied issues that are important and we need all the advocacy we can muster. On every front!

I personally don't care for the term: Living Well With Cancer. Or any of the other myriad "Living Well With" this or that condition. Seems negative but that's just me.

If I could choose the name, it would be something like: Living Well in Spite of Cancer or in spite of Diabetes, the loss of loved ones, limbs and/or functioning of body
systems/parts. The point being that we CAN
choose to live well, no matter what's gone awry with our physical bodies. Our emotional response is often the biggest limiting factor. Consider quadraplegics, for example. Many of them are so well adjusted and lead fulfilling lives. Yes, they have struggles, yes they have difficulties. They have fears, worries and concerns. They have vitural mountains to climb, every day. I personally stand in awe of such individuals. I so admire their ability to swing left and right, to fight anyone who tells them no or goes negative.

I believe that bc and quadrapelgia have more in common that may seem obvious at first glance, if we think about it. Bc has much in common with many conditions. First, comes the trauma of diagnosis and some idea of prognosis. From that point onward, it's all up to us really. We have to get about making our best treatment decisions. We get educated and decide what's best for ourselves. We go through whatever that may be and all the while, we may be afraid, anxious, and have many concerns, in addition to the problems treatment itself may bring us. WE need support. Somehow, we all get through these early phases of our experience. Then, we're left with the aftermath. This, I believe, is when the real mental work begins. This is when most of us decide how we're going to handle our lives, on a day to day basis. We learn what it is that we really want and need and begin trying to get to it. The IT is different for all of us and reflects our unique inner beauty and strengths. It's a time of amazing discovery for many of us. Not all of it grand or glowing because we may see, for the first time, not so great qualities about ourselves which we may want to change. Situations in our lives which may need attention or change. Why? Because, now we see life differetly than before. We've been where many may never go to see what life really means to us...what's really important to us...who's really important to us. Once we see all that, then we become responsible for following through with what we're going to do about it.

If we allow fear to become our focus, then we deny ourselves all the wonderful things we could accomplish in our new found dimension in life. When fear rules, we lose our creativity. We lose our joy. We lose our feel good ability. We give our lives over to fear. This can make us physically ill in the process. We're emotionally stressed out day in and day out and we all know that takes a toll physically. We don't have many choices really. We can choose to fight with all our might...not just lip service and good intentions, but really FIGHT. Some days may find us clawing our way
10 steps up the hill and sliding back 3 but the next day may find us climbing 15 steps up the hill and not sliding back even one! That's progress. The name of the game is persistence, I believe.

Wonderful strides are being made every day in bc treatments/approaches. This is wonderful but much of what we can choose to do for ourselves has little or nothing to do with that. We have to trust the science and medicines available. Keeping in mind that those two things are limited. We, on the other hand, are not so limited. We only need to recognize and trust our own abilities. We can get counseling to help us find our feet or take medications to calm us and help us focus while we find our inner strength. Explore new avenues. Make new friends. Get out as often as we're able.
Even if it is only to the corner of the back yard for an intimate picnic and a few wonderfully shared hours! (Oh, how I loved that shared story) Hey, this is OUR
lives and we'll live it and have our joy in it as we see fit, thank you very much. No other attitude is gonna fly for the long haul.

I'm going on, but the only thing which gets me through and keeps me balanced is this: Whether I have 6 months left to live or six decades (the latter not likely any way you look at it, ha)...none of it matters so much as right now...this hour, this day. That is the one thing I know I CAN control...the quality of my living. I'm willing to do the work to make it happen. And it is work. I could never say that I'm just going to blow this breast cancer experience off and go back to my life the way it used to be...I cannot because I'm not the same person now. I'm better. The one thing I WILL allow breast cancer to do is serve to drag the very best out of me. As long as I am breathing and conscious, this is how I've decided that it's going to be. When problems or disappointments arise, then I'll deal with them, one at a time, each on their own merit. That could be anything from the car breaking down, when I'm already running late, to having a pain in my body. I try to remember that I had ordinary aches and pains in my body before bc and that I'll continue to have them now too. An old hip injury which flares up from time to time...a strained muscle here or there...a headache or two. Whatever. (Bonus:I don't miss having periods one iota!) I don't allow myself to think "it's back" just because I have a pain or two. We all know that if something is severely painful, then we must go to our docs immediately. Otherwise, there's no point in worrying unless it lasts an unusually long time, in which case, our docs will check it out and if there's nothing there, then we can forget about it being the wicked "c"! We have to control our imaginations in that regard. Teach ourselves to relax.

The point to all this is that we don't have to live in fear. We don't have to be afraid of everything. We don't have to give cancer more power than it deserves. WE don't have to allow it to rule our every thought and action. Instead, we can find beauty and some serentiy in our daily lives. WE can increase our capacity to give. Our capacity to love. Our capacity to learn. We can find our joy in the backyard, we can climb a tree if it suits us, or a simple drive in the country, through conversation with a good friend, in donning our favorite slippers or watching birds, writing, singing, painting, sculpting, sharing with our sisters, laughing at ourselves and with our friends, OFTEN. Reading a good book, giving ballet a go when no one is looking. FULFILLMENT is all there is. We can do all these wonderful, simple and beautiful things not with cancer, but in spite of it!!!

Yes, I'd have prefered never to have had to ride in this particular chariot in my lifetime but since I'm in it, and as long as I'm doing the driving, then it'll be driven with all the positive force I can muster. Like a bat out of hell, if you will. That's how it feels, in a sense, like we've visited hell. But even though our feet may be burning, WE can still decide just how we're going to handle and respond to it. I don't know that there is any "coming out the other side" of where we've been and where many of us still are. But one thing is for certain: inside, where it counts, we CAN achieve a lot more than we may initially think we can. Anything less and we're cheating ourselves.

Hugs to everyone.

Love, light and laughter,
Inkblot

24242
Posts: 1417
Joined: Mar 2001

I have wanted to hear what allot of you have had to say and thanks for taking the time to respond to my posts. Thank you so much inkblot in sharing your feelings, it was worth posting twice. You are so right.
Much Love,
Tara

cat1switzerland
Posts: 119
Joined: May 2001

Hi Tara,

Keep fighting for your rights ! Yes, you have the right to be listened to, the right to be taken seriously by your doctors. You know, until a few years ago women in France couln't get medical insurance to pay for the shot in the back we get to deliver a baby with less pain (I forgot the exact name !). Babies did not get any pain medication even during traumatic treatments because doctors did not understand that babies feel pain. And in Switzerland, schools offer no meals to kids at lunchtime, a way to force mothers to stay home (I am a "bad mother " since I work, I suppose. Ha !). Well this world must become a better place, and we must fight every inch of the way, for our health and our rights. If it does not help us, it will help our kids.

Talking about recurrence : yes, it is scary. I felt I was cured even before the doctor told me I was. Just a strong feeling, a different way of looking at life... Not always so sure now that I am "cured" or at least that I will stay that way forever. But wether it lasts just long enough for a "few great hours" or for a few great years, at least now I have learned to put that word "great" in my life. I still work hard, but I now also have fun. And I would not have as much fun if I had not gone through cancer... It has changed me for the better. I am now taking my job less seriously and my life more seriously. And the way I am taking life more seriously is ... having more fun ! So I will take "cured" for what it's worth, a day at a time...

Thank you SO MUCH for sharing your experience, for participating in a conference and for fighting for all of us... I am glad there are fighters like you in our world.

Love and big hugs,
Cathy

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