This morning I was greeted by Facebook saying I had “memories” to look at. It turned out to be a post that I wrote twelve months ago. For just a moment, I had forgotten that I had written it and since then so much has been going on that I have not really been writing much at all. This post brings all sorts of thoughts flooding into my head (which before my first cup of tea can indeed be dangerous!!)..
So today, I am going to reflect on this post Hang on, How Did ‘That’ Happen ???. and work through where I am now twelve months on….
When you are living with a Secondary Breast Cancer Diagnosis, not always, but sometimes you wonder how long you will be around. Let’s face it, the statistics are not the most outstanding numbers I have ever seen. But the fact remains that they are just numbers and not specifically relating to me. They are a guide for the doctors to help with their treatment plans and that is what I continue to remind myself when I find myself wondering “how long”. I try to run with “we are not here for a long time but a good time”. The only spanner in the works turn out to be the side effects of the drugs that are assisting me to slow my cancer down and encourage it not to take over my body.
I wrote last year that I would have to sack my security team for letting the squatters into my liver, but I am a softy at heart and just gave them a warning. It was not really their fault as squatters are tricky little suckers and are very hard to evict at the best of times.
Upon being given the awesome news that I had 9 squatters in my liver, it was once again time for some chemotherapy. This time around we chose Taxotare and Cyclophosphamide (TC). It took me from August through to December to administer the six doses. As usual the side effect princess emerged and once again extra time was spent in hospital (nothing out of the ordinary there!!!). In the beginning it was the chemotherapy causing my immune system to crash and burn and slowly it became easier but then issues with pain medication and the injection to increase my immune response.. Apples and oranges really. It really was tricky but worth it (I can say that now as at times the pain level from the Neulasta (white cell booster) was very, very hard to handle due to the issues with the pain medications not liking me so much – but that is just how it is.. just kept trying till we found a common ground).
The one really great thing going on was the insertion of my Power Port. I had actually tried to avoid having one inserted as I had an idea that if I had one inserted that it would be forever and that would mean that my cancer was never going away. Yes, I know, it is a strange thing to cling to but up until that time it was an abstract way of holding onto some control of ridding myself of my squatters. The reality is of course that a Power Port has totally zero say in the squatters staying or going. But when you are faced with a diagnosis of ‘we can treat you but we cannot cure you’ it is amazing what your mind will do in an attempt to deflect that. I can sit here now and say that it was a really crazy thing to hold off on. My first chemotherapy after my secondary diagnosis, Abraxane was all administered through veins in my arm, I refused the Power Port and that was even though my veins had never recovered from the treatment back in 2004. I was stubborn and was clinging onto something that was just not logical.. But that is what cancer can do to you, take a perfectly logical person and turn them upside down. the Power Port gave me back my arm and made my treatments so much easier to administer. An attachment to your chest is easier to manage than one in your arm.. So now I say, give me the Power Port any day and why did I hold off so long?
This round of treatment did pretty well, but not as well as the Abraxane. My liver still has squatters but all have either died or are much smaller and right now I only seem to have three that are active. The zaps of radiation to my hip have helped out really well and the pain to the left has decreased. Best of all, my “numbers” have settled and are looking quite OK for now. So due to the intense nature of TC, my oncologist decided to give me three months away from any treatment to allow my body to repair. That was an interesting decision. I was really happy to be without treatment of any kind for a short while but in the back of my mind was just a little anxious that I had no toxins running through my body. But the choice was a good one as my body was really in need of the break and without it the very important ‘quality of life’ would certainly be compromised. Besides, I was only a blood test or scan away from discovering what my squatters were up to at anytime.
The challenge when living with Secondary Breast Cancer is actually balancing the treatment that will help you to stay alive and the quality of life you are able to attain whilst trying to achieve good medical results. It messes with your mind and your body and some days it is totally not funny or humorous in any shape or form. But it is just what you do. I am not anywhere near the point of giving up (never ever will), and I am not at the point where the quality of life is so lost that I am only existing. My oncologist is very mindful of continually reassessing my path to ensure I get the best possible balance I can.
I have had to change my outlook and my goals to fit into my ‘new normal’ and that is just fine by me (well most days, there is the inevitable time where you just mourn your old pre-cancer life, that is very normal). The trick is to find those things that you love, enjoy, admire and want to do. It does not matter what it is and it can be the smallest pleasure. It is all in how you look at it. Will I ever walk the Great Wall of China?? No, but the reality is, I probably would never have thought of doing it before anyway. There is still so much I can do because it is a big wide world.
I have now been moved onto a new targeted treatment Afinitor and Exemestane.. Best way to describe it is that the Exemestane is a hormone murder and tries it best to stop the cancer from getting to my oestrogen and growing quickly and with no regard to the host (me). The Afinitor is employed to roll back the resistance to the treatment (that is the issue with the cancer, it builds a resistance to treatment and eventually stops working) and holds Exemestane’s hand and ensures it does the best job it can and for longer than on its own. I am hoping that it is working (we shall know soon) and will be off standard chemotherapy until this combination no longer works and the cancer begins to grow again. As I read back over this paragraph I laugh just a little, such a ‘what if’ roller coaster. I try not to think of it all too much and just deal with life on a daily basis. I know all too well what the ‘what if syndrome’ can do to you if you let it.
At Christmas when I had finished my sixth chemotherapy, I actually headed to the dark side. I think it was when I lost the ability to be an optimistic realist for a few months. I believe that dealing with a disease that is working hard on ending your life can and does bring thoughts into your head that are sometimes really hard to shake. When I was first diagnosed, I immediately decided that I would become one of those people who got rid of it and never saw it again. I was hell-bent on it and was working very hard both physically and mentally to make this happen. The reality is actually quite different as I am well read and understand the disease all too well. You can eat well, exercise well, get enough sleep, ‘stay positive’, undertake treatments that are helpful but at the end of the day, the squatters will still work so very hard on out smarting everything that is thrown at them. Why did they arrive? Because they could.. That is really the only answer that I have. There is no why me, it is really why not me. There are so many people who are out there living with this disease, it is just luck (or lack of it) that see’s Secondary cancer at my door.
It took a while but I am back to being me and not living on the dark side. I know and understand that no matter what I do, it is what it is and I can choose to ignore it or embrace it and just live life as it presents itself. Actually, I have always known and believed this and I still live in hope that everything I do will be enough. At the end of the day, there is no right or wrong. There is no, it is my fault. There is no, you should try harder. Cancer really just does not work like that.
For my quality of life and for whatever benefit it can bring cancer related or not, I still try to exercise and eat well. I try to wake up and find something wonderful about the day and also retain a positive frame of mind. Most importantly I retain my sense of humour. I am on a mission to do more and see more and just enjoy what life can throw at me.
In my ‘previous life’ each job that I had done was busy, intense and high pressure. It was how I used to operate. Notice the words ‘used to’. That kind of pressure is now the thing I think about least. But there has been a hole that I have been struggling to fill. I am still me and still have so much rattling around in my head. I continue to be a volunteer Community Liaison with Breast Cancer Network Australia and also a member of the Speakers Bureau for National Breast Cancer Foundation and sometimes (especially during chemotherapy) this can be enough but I still need more. Sitting around the house has never been for me and even though I am getting better at it, it is still not what I want to be doing. At every possible opportunity I take time to share the information that I have found out about treatments, side effects and living in general. If it helps just one person I am doing well. As time goes by I will find more things that I enjoy doing and can cope with and for now have headed off to something I have always loved.
I have taken up photography. I am not terribly good at it ‘yet’. But I am reading, and currently undertaking a course to increase my knowledge. It is something I can do in my own time. It is something I can do in a group or all by myself. I can do it from my back deck on a bad day and out in the field on good days. My goal is to become so much better that people may actually wish to buy my photos (ok that may be a while away – but you have to have a goal). I am also hoping that my photos bring joy to those who see them and for now that is enough. It did not take long to decide to separate my blog ramblings from my photography as it is likely that there is a different audience for each. If you are interested here is the link Welcome to Turtle Surprises
It is indeed surprising where twelve months can see you..
Do you know the best thing about it all??
I am still here and still moving forward and still planning and living and loving life. I see everyday as a bonus