Category Archives: support

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Dear blog,

I feel that I’ve neglected you over the past weeks, and I apologise.

There’s been a few reasons. Probably the same ones you hear from almost everyone. You know? Busy at work. Busy at home. Busy studying.

But, there were a few other reasons too. Busy going to the movies. Busy going to dinners. Busy going to lunches. Busy entertaining at our home. Busy getting out for looong walks and enjoying nature. Busy trying to find happiness!

What I haven’t been busy with is very telling about where I am in this breast cancer survivorship path. I haven’t been busy going to doctor appointments. I haven’t had to visit any pathology collection centres or radiology centres. I haven’t had to fill a prescription (well, maybe just once recently).

I did manage to go and sit in on a survivors support group talk at my new cancer centre. It was on lymphodema and it just made me realise that my previous centre definitely didn’t address survivorship issues very well.

I do have a 3 monthly check-up coming up next week with my new oncologist. I’m not overly worried there’ll be anything to find. I have a couple of niggling pains that I am naturally paranoid about, so I guess we’ll need to get those checked. Statistics assure me they are likely nothing – but there’s always that niggling anxiety at the back of my brain…

Speaking of anxiety. I found an interesting article the other day in the New York Times, “Anxiety Lingers Long After Cancer”. It made me realise I am not alone. You may be interested in seeing it?

http://well.blogs.nytimes.com/2013/07/12/anxiety-lingers-long-after-cancer/?smid=tw-share

Anyway, must run. I’ve got some more living to do. The dog needs a walk I think!

❤ Jenn

caring for the survivors…

I’m a “survivor”. A cancer survivor. And my question is…

How well does your medical system look after survivors. The people, like you and I, who have actually been saved by the drugs, interventions and modern medicine?

As a breast cancer survivor I feel abandoned by my medical system. My ongoing health and the quality of life I have during my survival feels of no interest to my doctors and health system.

Take them in. Treat them. Then send ’em on their way. This is what our health sytem appears to be set up for.

But what about the residual effects from the cancer or the treatments? We have chemo plans and treatment plans. Where is the survival plan?

ASCO (the American Society of Clinical Oncologists) has a statement. They have recognised the need for ongoing support for those the medical system has fought so hard to save. Their statement can be found here: http://connection.asco.org/Magazine/Article/ID/3440/ASCO-Issues-Recommendations-for-Improving-Cancer-Survivor-Care.aspx

“Most patients still want to see their oncologists even after they have finished active treatment. Oncologists are well positioned to lead and develop a strategy for coordinating follow-up care with primary care providers,” said 2012-2013 ASCO President Sandra M. Swain, MD, FACP. “We can’t let these patients, who are living examples of the progress we have achieved in cancer, fall through the cracks. ASCO’s statement provides a roadmap for closing the gap in survivor care.”

Their recommendations are:

Promote patient-centered coordinated care through the use of shared-care models.

Increase adoption of quality improvement programs, such as QOPI®, which help physicians monitor and improve care for all survivors.

Expand research on long-term and late effects to develop the evidence base.

Strengthen the education of health care providers on survivorship care.

Educate and empower cancer survivors and their families to advocate for their unique needs.

As a recent breast cancer survivor in Australia I have seen none of this. I have not, so far, had a medical professional ask me “How are you?” or “How are you coping?”. And, I am desperate for someone to ask, since I feel so lost in my survivorship.

I have recently changed to a new doctor. At my next appointment I will be asking for a plan. For some help with working this all out. For help with trying to address and resolve the residual effects of the drugs and treatments.

If you are a survivor, how have you found the follow-up from your medical professionals, team and system?

❤ Jenn

A boost for brain training: Lumosity can help lift ‘chemo fog,’ study finds

Worried about chemo brain? This start-up appears, from research, to have games that can help improve your brain function with regular “brain training”. I’m going to give it a go to see if it can improve my defixits after the whole chemo experience.

What I need is to be able to improve my memory recall which really suffered…

Gigaom

Brain training – that booming yet much-debated business – just got another feather in its cap.

In a study published in the peer-reviewed journal Clinical Breast Cancer, Stanford researchers demonstrated that breast cancer patients who had been treated with chemotherapy improved their cognitive function after using exercises developed by brain training startup Lumosity. Created by neuroscientists, Lumosity offers dozens of games (to paying subscribers around the world) that claim to improve their memory, attention and creativity.

In the last few years, several studies have demonstrated that up to 75 percent of cancer patients can experience cognitive impairment and mental dullness, that can last five years or longer, after undergoing chemotherapy.

But research led by Shelli Kesler, assistant professor of psychiatry and behavioral sciences at Stanford, found that breast cancer survivors who trained with Lumosity four times a week for 12 weeks significantly improved in measures of executive function…

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another year…

A year older today and thankful for it. This is a pic of the great present that my hubby got me – that made me cry this morning…


Despite the many challenges over the past year and the residual health fall-out from this past year, it has been filled with some great experiences. This is the year I found the lost family I had been searching for (half sisters and their children). The year when I loved catching up with the family I already knew. The year when circumstances brought me back in closer touch with quite a few friends who we had seen far too little of in recent times.

This year brought us to two weddings, both for young people that we watched grow up from their first years. It was wonderful of them to include us in their special days. We loved being able to watch them starting their married life together. Brought us so many memories of when we were as young as they, and just starting out.

To my wonderful children, and their partners: You have stepped up so far this past year and have helped make a difficult time much more bearable. I have loved my shopping expeditions with my girls. I have loved watching my son mature and move from his school years into university. And I have loved meeting and getting to know your partners (this applies to my almost children Becca and Matt as well!).

This year brought not only personal challenges for us, but also financial ones (that continue). My wonderful husband has not only had to cope with supporting me emotionally through all the breast cancer crap, but has also had to hold down his demanding full-time job and worry about how to pay all the bills, including the extra medical ones rolling in. His love has been unwavering. His levels of confidence in being able to keep us all afloat have been hit though. But, through all of this he has been my ROCK.

I have had many wonderful birthday messages and each one is appreciated, just as if everyone were here in our house sharing the day with us.

❤ Jenn

breaking up with my oncologist…

One thing that has been obvious for quite a while now is that my oncologist and I do not have a great rapport. Our personalities just don’t really “gel” which was never more obvious than the appointment a few months ago where she actually told me I was “rocking the lesbian look” with my short hair. If I was a lesbian it would be no problem, but I’m not, and the comment seemed insensitive and still brings me to tears remembering it.

The main problem though, has been that I am very much into research (funnily enough, since I work in cancer clinical research…) and throughout my experience with breast cancer I have spent considerable time educating myself on breast cancer and keeping up with the latest news and research.

My oncologist didn’t seem that interested in recent research findings and dismissed quite a number of my questions without adequate explanation and I felt that my treatment and particularly my ongoing follow-up was just based on “what we do and have always done” not on what information is actually out there NOW in the medical world of breast cancer. I get the feeling I was supposed to make myself into “a round peg to fit in the round hole”. Really…

So, since I still need to see an oncologist every 3 months for the next 5 years (I’m on a clinical trial for women with early stage breast cancer) this relationship is really important and I need to be seeing someone who builds me up and sends me away from appointments feeling informed, listened to and looked after.

Today I had a first appointment with a new oncologist at a different hospital. One that is much closer to where we live instead of where I work. This is good because if this breast cancer comes back at some point I will probably give up work to deal with it rather than trying to struggle through as I did this past year.

The new oncologist was everything I wanted and need. I came away from my appointment feeling like I had just had a great “first date” or won the lottery.

He asked me questions and seemed determined to shape my follow-up strategy based on ME (well, he at least made me think that). He sent me away feeling more informed after getting answers to questions that I had not had adequately answered previously. And, he has proactively asked me to have a couple of follow-up tests in a few months that will give us a clearer picture of where I stand in regards the ongoing hormonal tablets I need to take for at least the next 5 years.

If, by some horrible chance, this breast cancer comes back one day this guy is definitely the person that I want guiding me through my options, so why did I not make this change sooner?

The answer to that question is quite frightening to me in hindsight.

I have realised that despite my experience in the cancer “industry”, even I was caught up in some old fashioned attitude that “doctor always knows best” and also caught up in the fear that if I pointed out my dissatisfaction I would not be treated the right way. In other words, I spent quite some considerable number of months ACTUALLY TRYING TO BECOME that round peg to fit in the round hole even though I felt more like a complicated trapezium shaped peg. What I should have done, and what I hope I have now done, is find a complicated trapezium hole that is just perfect for me!

Are you caught up in a medical relationship that is not working for you? Were you brave enough to move on and find someone more suited to your “shape”?

I am so happy that I have now done this…

taking time for soul building…

My hubby and I have driven a thousand kilometres this week to spend Easter weekend with some good friends – roadtrip! Our kids have all stayed home without us and while it seems envigorating without them, at the same time it feels lonely. We have been enjoying just being able to do what we want, when we want to, but…


You know, I’ve discovered over the past few days, that I can travel a huge distance and still not get away from what troubles me. Despite the quaint B&B, the beautiful beaches, the good meals and the good company, I still found myself overcome with profound sadness last evening. The sort that sweeps over me and just makes me want to sob.

A counsellor and a psychiatrist have both determined that I’m not depressed so how do I deal with this?

I usually take myself off to the quiet of my room and give in to it, but even I’m getting tired of this. I WANT to get over this! I want to move on. I want to not worry about what “might happen” and get on with what “is happening”.

Breast cancer has stolen so much from me. According to the medical specialists, and even other patients, everything is “do-able”. Surgery was do-able. Chemo was supposedly do-able. Endocrine drugs are do-able.

So if this whole thing is so do-able why are so many of us coming out the other side (those of us lucky enough to not have metastatic disease or recurrance) so broken in spirit?

I know I’m not the only one. I’ve read other women’s words at http://www.breastcancer.org and I’ve seen the look in the eyes of the women I met at the Moving On From Cancer session I went to recently. We are mostly all broken in spirit and searching for ways to make ourselves whole again.

I’m hoping that this road trip will leave me a little refreshed. I already love the fact that hubby and I were able to drive a thousand kilometres and are still talking to each other. I love the nail varnish I bought today and the beach walks we have enjoyed.

Happy Easter everyone! May your souls be refreshed.

not quite belonging in the group…

Yesterday morning I went to a Cancer Council (Australia) session called Living Well After Cancer. It was nice to meet other women and men, survivors and carers, who had come through the experience. A big hello to Sharon who has her own blog dailyrant. And a big thanks to Marie from Breastcancer Twitterchat who made me aware of this program (during a #hcsmanz Twitter chat).

As usual though, amongst those attending who had experienced breast cancer, there were mostly older women over 50, a couple of younger women in their 20’s and me on my own as a women in her 40’s.

I find this a lot in the breastcancer “real world” as well as in the online community. Women, like me, in their 40’s, are stuck in the middle. Even the research studies tend to be looking at either “post-menopausal women over 50” (not me) or “young women under 40” (not me either). Very disheartening when the research community also seems hard-pressed to figure out where I fit!

In these situations I usually relate and align myself more with the younger group of women as we seem to have similar challenges with trying to get through, and carry on from this experience.

This was true again yesterday. While the older group of women related that it was good to be able to wake up in the morning and choose to have a doona day (doona = quilt); in contrast, the younger group of women were relating the struggle with having to get up and go to work when you’d rather have a doona day.

I still don’t absolutely “fit” with the younger women though…

I’m not coping with these scars and drugs that affect my (cover your eyes now if you are sensitive) body image and sexual being while still single. I have a wonderful and amazingly supportive husband. I didn’t have to think about banking eggs before I started chemotherapy last year and I don’t have to live with knowing I may never have a loving permanent relationship or children

NOTE: I’m happy to lend my kids out to anyone who thinks they want some.

It was an emotional morning for me. Seeing our common challenges written on a whiteboard brought tears to my eyes on several occasions. And, while it was good to find others with whom I’ve had a shared experience, it was also sad to find us all struggling with the same issues and to find yet again that I just didn’t seem to quite “fit”.

PS: It’s Sunday today. I’m having a doona morning!