Come & try dragon boating for breast cancer survivors in Melbourne!
Do you live in the greater-Melbourne area? Come and try dragon boating for free for breast cancer survivors! Experience the wonderful benefits of outdoor exercise and support from fellow breast cancer survivors in beautiful Victoria Harbour, Docklands! You can come as many times as you like for 1 month for free! We can't wait to meet you! Dragons Abreast Melbourne Pink Phoenix is a Group Member of the wonderful Breast Cancer Network Australia (BCNA). Sign-up for your free 1 month Dragon Pass here: https://www.revolutionise.com.au/pinkphoenix/registration
Dark Humour is good for your health...
I joke around when I'm going through hard times, its just the person I am. I have a dark and quirky sense of humour that can leave some people perplexed, but for me, its an important way of coping. Scientific studies have shown the value of humour in hard times and I have given links to a few of them. If you feel like a laugh, have a look at the "A bit naughty - but funny!!! Show us your 'naughty ones'! Please note some posts may offend" page and the 'Friday Funnies' pages? https://www.curetoday.com/view/breast-cancer-isnt-funny-but-humor-can-heal https://blog.thebreastcancersite.greatergood.com/cs-dark-humor-therapy/ https://onlinelibrary.wiley.com/doi/10.1111/scs.12203 https://www.fredhutch.org/en/news/center-news/2015/08/cancer-humor-eases-stress.html
recommendation
I am hoping that I can ask about this, but please delete if not. I am 18 months post treatment for hormone positive breast cancer stage 1. I had a lumpectomy followed by radiotherapy which finished in November 2019. I am no longer under the care of the radio-oncologist and see the surgeon six monthly. I am on femera from which I suffer a range of side-effects. Over the last few months I have been having increasing neck and shoulder pain on the side of the cancer. My physio, who I have consulted, is a sports physio and has very little experience in breast cancer related things, so I was wondering if anyone has come across a physio in Perth who has specific expertise in breast cancer? I tried to contact my breast care nurse who I only had minor contact with way back when, but no answer. Any assistance would be helpful Thanks
Ex-Med Exercise (Melbournians only)
I did the Ex-Med programme last year in their trial phase. Yesterday I received an email saying they were up and running and open to anyone who's had cancer. We don't have the Encore programme in Victoria, and while we have to pay for this one, I can thoroughly recommend it for post-active treatment strength and fitness training. Several members of the forum have done it and loved it. From the email: "EX-MED Cancer is the result of years of scientific research, refined by extensive consultation with cancer patients and health professionals. EX-MED Cancer helps people with cancer participate in targeted exercise medicine specifically designed to counteract the negative effects of their cancer and its treatment. This allows people with cancer to exercise safely and effectively – minimising any risk of side effects and maximising benefits to their health and wellbeing. WHO IS EX-MED CANCER FOR? EX-MED Cancer is now open to all people with cancer. Cancer patients with any type and stage or cancer, at any point before, during or after treatment are eligible to participate. The program is tailored to each person’s individual needs based on their type and stage of cancer, the treatments they have had, are receiving and/or will receive, any side-effects they are experiencing, their overall health status and their physical ability. People who have already participated in EX-MED Cancer are very welcome to participate again as many times as they wish. WHAT DO PARTICIPANTS RECEIVE? All EX-MED Cancer participants receive an individualised cancer-specific exercise prescription that is personalised to their unique needs. Participants receive a 4-month structured, supervised, program delivered by cancer specialist exercise physiologists in community-based exercise facilities (i.e. local gyms and leisure centres close to patients home or work). Participants receive 3 x 1 hour individual sessions, 36 x 1 hour group-based sessions and a 4-month gym membership. Participants also receive a personalised plan for their ongoing exercise program after the program has finished. WHAT BENEFITS CAN YOU EXPECT? Based on our Victorian Government funded evaluation of over 200 cancer patients, participants in EX-MED Cancer should expect a 20% improvement in physical function; 17% reduction in cancer-related fatigue; 10% reduction in distress, depression and anxiety symptoms; and a 15% improvement in quality of life among other benefits. No injuries or negative side effects occurred to any of the 200 participants previously involved and only 10% of people could not complete the program due to illness. Despite being reluctant to start exercising, participants attended ~85% of the ~40 exercise sessions throughout the 4 month program. After finishing EX-MED Cancer, people with cancer described profound changes to their lives, not just to their physical and mental wellbeing, but also to their ability to move past cancer and re-engage more fully in all aspects of their life. WHERE IS EX-MED CANCER DELIVERED? EX-MED Cancer is currently operating out of 5 locations throughout Melbourne: 1. CBD 2. Coburg 3. Hawthorn 4. Caulfield 5. Sunshine We aim to open more locations in metropolitan and regional areas as soon as possible. HOW MUCH DOES EX-MED CANCER COST? As a not-for-profit organisation we are committed to keeping costs as low as possible to help as many people as possible to have access to best practice exercise medicine. The fee is ~$30 per week for 4 months which equates to a total cost of $500. This cost is over 60% cheaper than industry standard rates. HOW CAN I PARTICIPATE? Anyone with cancer can register to participate in EX-MED Cancer by contacting our team using any of the following options: Website – www.exmedcancer.org.au/enrol-or-refer Email – exmedcancer@exmedcancer.org.au Phone – 1300 EX-MED Cancer (1300 396 332) Text Message – 0421 943 875 There is no waitlist involved with EX-MED Cancer. As soon as you register your interest we will contact you to answer any questions you may have and initiate the process for starting your individually tailored exercise program."
8 Years since Diagnosis of TNBC and I am going strong
Letting you know that I am now 8 years post Diagnosis and treatment for TNBC and I am alive and well. It is scary when we are first diagnosed and we often fear the worse. This is to give hope to newbies diagnosed with TNBC there is life after Treatment.
Our 'New Normal' - a thought provoking article
A friend of mine shared this recently .... Author unknown— I had no idea how much cancer sucks. The worst part of cancer is that so many people confuse it with so many illnesses like pneumonia or maybe even the sudden trauma of a broken hip. Although these diseases are acute, painful and sometimes dangerous, they are brief insults to the body and soul. Once the immediate danger is gone from the body, they usually do not recur or spread. You survive! You heal! They do not become a permanent burden in our minds or lives. You go back to your normal way of life, with no real misgivings. Cancer is not like that. Yes, it can be sudden, painful and debilitating. Yes, most of us survive and it is most unlikely that our cancer will return. BUT the difference is that our minds and our lives will never heal. Cancer in remission does not leave. The person we were before cancer ... will never be the person we are after cancer. Family and friends do not expect to see this change in us and are baffled as to why our lives will never get back to "normal". It is hard for all of us to accept that a cancer survivor is, and will somehow, always be a cancer patient. First, there are the obvious and common physical effects on our body and soul. Aches and pains may persist for years. Scars and permanent surgical changes will always be there. Chemotherapy injuries such as loss of hearing, heart damage, vision or nerve damage may follow us. We may have slight shortness of breath or decreased endurance. Our skin, nails and hair may change. We may taste or smell things differently. Or altogether lose our appetite and enjoyment of food. Or worst - lose our sexual drive or satisfaction. Our memories may never be as sharp. And sleep may become erratic. Our innocence is taken away - we lose our 'soul'. We may always be tired, even after a good night's sleep. We may become weak or our mental awareness may be lost. Loss of concentration may make it hard to work or enjoy something simple like a reading book, watching a movie or visiting with friends or maintain a job. We may not have the energy, the excitement. Life may be drained of fun, satisfaction or purpose. Perhaps the inescapable change is that you may have the "never leaving, always just around the corner", deep mental pain, that reminds us that today or tomorrow, the cancer may return. Every discomfort we get will seem to be some kind of sign that cancer has come back. Something as simple as a winter's cold, a toothache, or heartburn after a spicy meal, can scream at us! It is very difficult to "put cancer behind you" when it is always in the back of your mind. The clincher? None of this will be obvious to anyone else. No matter how much our family or medical caregivers try to empathise, to comfort, connect to understand - surviving cancer is a deeply changing and highly personal experience. With that being said, the cancer transformation is different for each person and each patient. None of us were the same before the disease, and none of us experience this disease the same way. There is no "NORMAL", it all becomes the "NEW NORMAL" Cancer sucks, and keeps on sucking. Deep healing requires the understanding that things are not the same. It requires communication and space, counseling, support and patience. It requires time to find the person you have become. Author Unknown
Prevention in Survivorship - "What can I do to prevent a cancer recurrence?"
The Cancer Council is hosting a webinar tonight on this topic. Apologies for the late notice but if you are not available this evening, you can still register and then receive an emailed link to the recorded webinar. (Details below) 28th February 2019 7:00pm - 8:00pm (AEDT) Whilst more research is needed, current research does suggest that maintaining or adopting a healthy lifestyle can reduce the chance of your cancer coming back or a new cancer developing. A healthy lifestyle includes things such as eating a healthy diet, being physically active, maintaining a healthy body weight, improving your psychological wellbeing, protecting yourself from the sun, stopping smoking or cutting down on alcohol. Some people who have had a cancer diagnosis may also experience an increased risk of other chronic health problems. Adopting a healthy lifestyle can also help prevent chronic health problems, such as heart disease or type 2 diabetes. This webinar will look at prevention after your cancer treatment and will provide a range of practical strategies you can adopt to help to prevent your cancer coming back. Including regular health checks, adopting a healthy lifestyle, protecting yourself from the sun and more. Panel members Professor Janette Vardy, Medical Oncologist, Concord Cancer Centre Anita Dessaix, Director, Cancer Prevention and Advocacy,Cancer Council NSW, Martyn Black, Cancer Survivor Survivorship Register for this webinar If you are not available on the night, please register and we will email you a link to the recorded webinar. Read more at https://www.cancercouncil.com.au/get-support/webinars/#OtK4gqMwbw6myTcK.99
2 year all-clear, 2 year all-fear.
I've just had my second year check-up scans. It's always going to be so stressful. I've had a range of worrying new symptoms pop up over the last couple of months while on my Tamoxifen break, so I'm worried something was there and has now domino down my left arm lymph nodes. Taking a look at my scans, my layman eyes don't see a disaster. There are areas in the ultra that look like masses although to my memory they don't seem to have the blood flow activity to indicate tumors, however on the mammogram they radiate the margins of my crash site (... that's what I call my scar tissue, haha). And as much as I'd like to think hey, it's just age, it's just calcification, there's nothing like it in my other breast to establish that. I know, I know, the cardinal rule of check-up scans is not to look at them before your consultation but as if have scans of inside my body in my possession and not look? Ha! I never shook the lethargy. My doctor told me that it's actually a normal thing for cancer survivors to be chronically tired. There are no solutions; work while tired, exercise while tired, eat while tired, struggle to sleep, wake up tired, repeat. And everything always hurts. It's just my normal now to need painkillers to get through the day. 2 years on and my radiotherapy pain still hasn't gone away - and it's not just that it's not gone away, it hasn't "settled" the way I was hoping. It might be that during healing I just got lucky and clumps of nerves got together to make particular movements painful. I hurt every day and I needed to complain about it. It's been so long of waking up with pain and no energy and I don't complain anywhere. Sorry BCNA. You get my worst side. I've refrained from posting quite a lot and just kept to the activity threads because I feel that my particular forum needs are a form of clutter for those in active treatment. A follow-up/aftercare category/life after category would be nice?
The New Me.
I was so looking forward to a works Christmas Party this weekend to catch up with people I hadn't seen for a quite a while as well as friends who have been there for me since the beginning of this shitty BC journey. I got the old glad rags on ready for a fun night but once having got there I just felt I didn't belong. Like some sort of out of body experience when you are there but not there?? It was lovely to see people but I couldn't muster up one ounce of fun or enjoyment for the evening when everyone else was so obviously enjoying themselves. With the realisation all I wanted to do was go home I left early with plenty of tears driving home thinking what the hell is wrong with me. I know in my heart it will get better, I guess it was just one of those moments when you want your old life back and some sense of normality.
Oncologist Response to Fear of Recurrence
I went to my checkup with my oncologist on Thursday and I thought it worth sharing. I like my onc and trust him to be doing the best for me but I know that to a large extent, that's on faith and recommendations from other health professionals. He's a fairly quiet and reserved man who I have come to know more over the last 11 months and in all of my dealings with him, he has shown concern and care. Some of you might remember that a few weeks ago I had my treatment review with my surgeon (another one I really trust) and he dropped a bombshell on me that my cancer was pleomorphic and that it quite possibly had only been there for 12 months, maybe up to 2 years, prior to diagnosis. Now, this may have been told to me early on and I just didn't take it in. I still didn't really take it in when the surgeon said it recently but it has played on my mind since and of course, I looked at Google for pleomorphic lobular and didn't like what I read. Anyway to get to the point, this, in my words, is the gist of what my onc told me when I asked questions on Thursday: Firstly, they can only estimate how long the cancer has been there - there is no test that works backwards. My prognosis is good and the numbers are on my side against a recurrence. With Letrozole, it is even better. Obviously, these are statistics and while statistics tell a story, they don't help the individual. He said that he knew for me, there is only "cancer" or "NED". But at this stage, I have to believe in NED until it is shown to be otherwise. Because living, thinking every twinge or pain is a recurrence, is no way to live. And between him and my surgeon, they will be monitoring me closely. He also said that he knew that trying to live without anxiety of recurrence wasn't an easy thing to do but that it was really important for my mental health to try. His final words on the topic were that the best thing I could do to help prevent a recurrence was exercise and fitness but at this stage I had done everything I could do and that now it was time to try to get back to living. Before anyone gets upset with this, if I haven't imparted the tone of the discussion properly, that will be purely my fault. At no time was my onc suggesting that I was being foolish or that my feelings were unfounded. And these are my words because my memory is terrible (something he is aware of and understands!). This was all said in both a very professional and considerate fashion. I hope this helps someone who has gone through treatment and is trying to deal with the anxieties of living afterwards. While I know that I won't stop worrying immediately, I do hope it lessens. I was dealing with a pretty dark whirlwind of emotions prior to my appointment and what he said has certainly calmed that significantly. I have to try to live with what has happened to me. I don't know how much time I will have - 1 year or 40 years - no-one does, BC or not. But I do know that I don't want to live them under a constant cloud of anxiety.
