Category Archives: survivorship

jennt28

December 7, 2014

Such a gap… 3 years…

There’s been changes of course. Change of job. Moved house.

Both directly a result of the whole breast cancer experience.

The job change was needed – to move away from living and working with cancer. And now I sit in a children’s hospital research centre. Managing paediatric studies is pretty far from cancer. Particularly since this hospital has a separate oncology group and my centre oversees everything else. And yes. At this point it is “my” centre as I manage the centre and the staff and projects.

The house move? Well we moved from our big house to… A big apartment. And the kids all came too – which is why it had to be a big apartment!

Our lives have become simpler. Less tied to maintenance and upkeep. And for the first time ever I have a garden. Actually, three gardens on three balconies. Strawberries. Tomatoes. Hedges. Grapes. Lettuce. Herbs. Geraniums. Lots of geraniums. All red to remind us of our time in France earlier this year. The image here is of the balcony off our bedroom. Watching a summer storm rolling in.

And yes. Just a few days ago the third year anniversary of my breast cancer diagnosis past. No sign so far of it coming back – but my annual scans are due in January so an element of anxiety is setting in. Particularly in the early am when I’m lying awake (insomnia is a side effect of the drug I take daily to try and keep cancer from coming back).

Breast cancer does not dominate my life anymore and I rarely visit the support sites I used to. This is good – I think…

Whoever you are – I wish you a blessed Christmas and New Year this year.

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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