Best Of
Re: Exercise
I haven't had rads yet (start Thursday) but I'm doing the Mepitel. As for creams, I've heard Moo Goo and Calendula.
Sister
5
Re: My Health Record
I've opted out. For the moment. I'm not happy with many things about this system. Once I see some of those concerns addressed, I'll opt back in.
For me, at the moment, in an emergency situation the only drug that would be critical is my blood pressure meds. Someone will figure that out. Everything else could be suspended until I'm well enough to request them, or I'm totally screwed in which case it doesn't matter. That may change.
Between Medicare, Centrelink, the ATO, linked in, Facebook, Gmail, yahoo, Microsoft Office 365, Reckon1 and God knows who else, there are few secrets in my life, but as soon as I hear 'If you have nothing to hide, you have nothing to fear' I go all bolshie.
For me, at the moment, in an emergency situation the only drug that would be critical is my blood pressure meds. Someone will figure that out. Everything else could be suspended until I'm well enough to request them, or I'm totally screwed in which case it doesn't matter. That may change.
Between Medicare, Centrelink, the ATO, linked in, Facebook, Gmail, yahoo, Microsoft Office 365, Reckon1 and God knows who else, there are few secrets in my life, but as soon as I hear 'If you have nothing to hide, you have nothing to fear' I go all bolshie.
Zoffiel
5
The ACTIVATE trial
Increasing physical activity after a diagnosis of breast cancer has been shown to improve both physical and emotional health, and overall quality of life. It can help improve body weight, muscle strength, confidence, mood, depression and anxiety. Research also indicates that regular exercise may also reduce the risk of breast cancer coming back yet many women who have had breast cancer struggle to start exercising or increase their level of activity without help. .
Cancer Council Victoria is running a trial to help women who have finished treatment for breast cancer to get active. The ACTIVATE (ACTIVity and TEchnology) trial will test whether using wearable technology activity monitors (the Garmin vivofit 2®) can increase physical activity and reduce sitting time amongst among women who have undergone treatment for breast cancer. Wearable technology activity monitors track and record a person's fitness-related metrics such as distance walked or run, calorie consumption, and in some cases heartbeat and quality of sleep.To take part in the ACTIVATE trial, you will need to:
- Have been post-menopausal at the time of your breast cancer diagnosis;
- Have been diagnosed with stage I-III breast cancer;
- Have completed your active treatment (i.e. surgery, chemotherapy and/or radiotherapy) at least six months ago being on hormone therapy (e.g. tamoxifen, anastrozole, letrozole or exemestane) is acceptable;
- Currently be physically inactive (i.e. doing less than 75 minutes per week of moderate-vigorous physical activity) and spend at least six hours per day sitting.
Other eligibility criteria include being able to speak/write fluently in English and having daily access to a smart phone, mobile device or personal computer.
If you're interested in getting involved or finding out more about the ACTIVATE trial please download the participant information sheet from www.cancervic.org.au or contact Brigid Lynch, Principal Investigator on (03) 9514 6209 or email [email protected].
Re: Calling All Network Members - when is your birthday?
It's the beginning of a brand new month - asking for anyone who wants to be included in the birthday role. Just respond with your birth date and we can all celebrate your special day with you.
socoda
9
Being scared
Hi guys as most of you know my husband had a heart attack 3 weeks ago, well its been difficult coping with the mood swings and treading carefuly. ln the early hours this morning he tapped me on the shoulder, no girls not for that, but said lm so scared and then cried so hugs in the dark and lots of patting on the back.made me think l never the whole time during cancer told anyone l was scared l was but l didnt say it. so lm putting it out there girls lve been scared , l always hope bc stays away but really l should be saying lm scared cancer will come back, just had to say it. if a man can say it l should to. its ok to say lm scared
adean
8
I’m Not Cancer but Cancer is a Part of Me
I have been living with cancer now for nearly 10 years. It would be stupid of me to say that cancer has not changed me over the years. My illness is terminal but treatable and I still have a very good quality of life. I now accept cancer as part of my being. It has certainly affected me physically and mentally. During my journey there have been 8 events that profoundly affected and changed me. Having said this, I do believe I have never lost myself. “Cancer” has challenged who I am but through it there has been a lot of self-discovery along the way. Some of it good some of it bad.
My circumstance has not allowed me to forget “cancer". Living with cancer, you overcome one hurdle, feel good for a while, then it’s back again. Because of this, I have lost my personal sense of safety and health.
This year my intention was to take some of that back by undertaking gym work under the supervision of an exercise physiologist, which I enjoyed. Then was faced with another hurdle. Through long term use of bone density drugs, my femur shafts become brittle and fractured. This resulted in having femoral rods inserted in each femur. Following my operations, I refractured twice so this “hurdle” has lasted since May! Easily my biggest test living with cancer. None of this is character building, it tests your resilience. Thankfully I am turning the corner.
Ok you may say oh poor Karen, but you always meet someone worse off than you. My gym sessions were at a Rehab facility where you see people severely traumatised. I admire their courage and determination to gain some mobility.
Because of cancer I now have bucket loads of self-discovery, teaching me to be more tolerant, slow down, be unselfish and compassionate. I am still working on “me” time. I think this is difficult for women.
I have greater compassion for people facing illness and adversity, particularly those who do not have the same level of determination, positive attitude and fighting spirit which I seem to inherently have.
There is one aspect of my behavior which I’m not proud of. My life goal has always been to be gracious and seek the high road, but at times my actions prove that I am not quite there. Truthfully, I work hard to ensure that I don’t look like a cancer patient or inflict my predicament on those around me. After all, it’s no one’s fault that I have metastatic breast cancer.
At times I have made some pretty bad jokes about dying. I have often been flippant with my husband about my mortality not thinking how this affects him. I have jokingly talked about my mortality to my friends in a non-sensitive way. I now make a conscious effort to not do this. It upsets them. I read this quote somewhere and it resonates with me “You are not dying from cancer; you are living with it!” It’s so right, and I have embraced that sentiment.
There is one aspect of my behavior which I’m not proud of. My life goal has always been to be gracious and seek the high road, but at times my actions prove that I am not quite there. Truthfully, I work hard to ensure that I don’t look like a cancer patient or inflict my predicament on those around me. After all, it’s no one’s fault that I have metastatic breast cancer.
At times I have made some pretty bad jokes about dying. I have often been flippant with my husband about my mortality not thinking how this affects him. I have jokingly talked about my mortality to my friends in a non-sensitive way. I now make a conscious effort to not do this. It upsets them. I read this quote somewhere and it resonates with me “You are not dying from cancer; you are living with it!” It’s so right, and I have embraced that sentiment.
For many years I saw my career as being a big part of my identity. As my disease wasn’t going away, in the end I was treated differently which affected me emotionally and financially. What had been my normal lifestyle was turned up-side-down. Myself and my family had to adjust to this big change as I was the major income earner. This has and still does test our resilience.
Technology is keeping us living well despite our underlying disease, yet we are finding we cannot work. I would like to see a flexible workforce for people who are living well with cancer who can work are encouraged to stay working in some capacity rather than eat away at their life savings and ultimately find themselves prematurely on a pension.
Now I focus on my health and my mindset. I have been an excellent advocate for myself and have actively participated in the management of my treatment. I am a BCNA Consumer Representative and have enjoyed the assignments that have come my way.
By nature, I am an optimistic person, I am very thankful for my blessings. I have two wonderful adult boys and a supportive husband, sister and extended family. I also have great mates that are a shining beacon. When you are faced with a terminal illness, its these relationships that are your focal point. Bricks and mortar and material things have become irrelevant which have been replaced by experiences shared with family and friends.
I know it sounds clichéd, but I take nothing of granted and enjoy every day.
You never know what curve balls life is going to throw at you, and it's how you deal with them that defines who you are. For now, I am living with cancer. It is my hope that we obliterate it, but I am not wasting time worrying about it. Anyone that has cancer knows that life goes on and it’s up to you to go with it.
Karen Cowley
Cancer Lifer for 10 years
Karen_C
23
A teacher called cancer....
LIFE ……
Available for a limited time only. Limit one (1) per person. Non-transferrable. Subject to change without notice. Terms and conditions apply. Fragile. Handle with care.
I have always been a compassionate person, especially toward the elderly but when someone is ill my empathy gauge is turned onto full steam ahead.....No matter how I'm feeling, I will try to help them and offer support...
Cancer had changed my life way before it got to me. That bitch has taken many of my family and friends... I have seen the ups and downs....the pain,.... the turmoil....the destruction....but now I have FELT it for myself....
When I heard those words 'You have cancer' I thought I would burst into tears......tears did make their way to my eyes, but that's as far as they went.....I took a deep breath and said "OK, what now?"
From that day on a steely determination took up residence in my mind....everything else was pushed aside.....I remember the many appointments....the information, oh the bloody information! So much is thrown at you, your brain keeps what it can cope with and spits the rest out like a sour grape...I became Wonder Woman.
Offers of love, cooked meals, gifts, help and support came left, right and centre.....some didn't know what to say, some said silly, but well meaning things.....some (my own siblings and mother) wanted nothing to do with it or me....
I have been discussed in locked rooms at big tables by many medical professionals, poked, prodded, scanned, xrayed, drained of blood, injected with dye, blasted with liquid chemicals, cut open, had parts cut off, instructed to swallow this tablet and that tablet, lost all of my hair, had to put up with countless side effects, told they don't know if what we are doing has got rid of the cancer entirely..all while being told I'm doing really well. Really? I feel like the walking dead....have skin like a shedding snake, look like Uncle Fester and you still say I'm doing really well??
Some days have been an absolute train wreck....crying, depression, anger, "why me?", wanting to shrink away and not be noticed....some have been triumphant.....most are just mundane.
Mundane is a big part of recovery....you can't do much so you tend to do things in fits and starts and then you must just sit......or rest......or sleep.....or rest.....or sleep. I have slept so much I am wondering if I will sleep at all once I've fully recovered!
Although it gets on my nerves some days....I have become comfortable with mundane....it's my new normal for now....I have spent way too many days and nights beating myself up for not being stronger, for thinking I'm a wimp....why aren't I out jogging like some other women are saying they're doing......I have learnt that we are all different, cope differently and have entirely different treatments.....I thought it was one generic type for all......WRONG!
Who would think that such an insidious disease could teach us.....Cancer is like that horrible teacher you hated in school....She stands at the front of the class, barking her orders and delivering despair....With one swift flick of her hand, your day and mood can change.....but as much as you hated her, her actions and deliverance stick in your memory and shape you....
She has taught me many things when it happened to others.....But now it is MY classroom that she is in, her lesson has made an impact....
Cancer has taught me.....
~ family IS everything.
~ i really do have some amazing friends.
~ not to take things and life for granted.
~ perspective - seeing things and the world in a totally different light.
~ not to sweat the small stuff.
~ who is really important and who isn't.
~ shown me the true courage of not only myself, but others.
~ that the laundry, housework and such are not priority....unless you have no underwear left!
~ to be kind to myself.
~ to accept help (Finally!)
~ feel and face fear, but do it anyway.
~ value the good and the bad.
~ that I am stronger and more resillient than I ever imagined.
~ to cry......ALOT
~ that I AM worthy
~ patience......this is something that was and still is tested the most!
I am sure there are so many more things, but these are the ones that are most important to me...
I am grateful.... grateful for my husband, (his) "my" family, my children, my friends.....the strangers that I have become "friends' with through this experience, my doctors, nurses and those that work tirelessly behind the scenes researching, trailing and getting closer to finding a cure for this bitch of a disease.......
........and in an ironic way, the lesson that cancer has delivered..
