Category Archives: cancer

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

A Wake Up Call for Young People With Metastatic Breast Cancer…And All of Us

An important message. Breast cancer kills at almost all ages and there needs to be more research on metastatic disease…

A Wake Up Call for Young People With Metastatic Breast Cancer…And All of Us.

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…

trying to regain inner peace…

I had my second last Herceptin infusion last week before travelling north into a storm for a week’s holiday at the beach.

I should probably explain up front that since my breast cancer diagnosis back in December 2011 I have not slept well. In fact, that’s an understatement since I can count on one hand (five fingers) how many times I have had a full night’s sleep in the past year!

Feel free to make suggestions, but really, I have tried every darned thing suggested to me to try and get some sleep!

– meditation tapes – yes
– relaxing music – yes
– lavender essential oil on my pillow – yes
– no coffee – yes
– no iPad – yes
– no tv – yes
– sleeping drugs – yes

Well, you get the idea… None of them worked. Not even the pharmaceutical products.

And the worst part in some ways was that I wasn’t waking up stressed or worrying or dwelling on my diagnosis. I was just awake.

This morning, a week after our holiday began, I woke at 6am. There had been NO WAKING IN THE NIGHT. Finally.

So what do I think allowed this to happen? Well, this week has been filled with family and fun. Some rain and some sun. Sitting watching waves break on shore. Listening to their breaking sounds at night in bed. A visit to the circus (Lennon Bros Circus). And, the BEST steak I’ve ever had just last night for dinner! (zebu bar and grill)

Was the steak the deal breaker? Was it the glass of french champagne that went with it? I think not…

It was a week surrounded by family and fun. And I can tell you, I don’t want to leave!

❤ Jenn