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,