Wednesday, December 12, 2018

Life after cancer

One year ago

Next week, one year has passed since I got my cancer diagnosis, and my life took an unforeseen and totally unexpected turn.

At the very moment, when my oncologist explained all about my tumor, something changed forever, and ovarian cancer became part of my life. Well, to start with, it was not only part of my life, it directed and determined what had to be done in order for me to survive. Now one year later, after my treatments have been successful and I have reached, what every cancer patient dreams of, remission, I try to adjust to my life after cancer.


Stability and predictability

My cancer came out of the blue, without warning and without any symptoms, but a tenacious cough. I did not fit into any of the common risk groups that increase ovarian cancer probability, such as age, obesity, smoking or genetic predisposition.


According to my oncologist I was one of them who just had bad luck. I have tried not to dwell too much about my bad luck, as I believe it is pointless. It is what it is and I can only look forward and focus on making the best out of every day.

Given my unexpected diagnosis, I have longed for getting back the familiar feeling of stability, that there is some sense of predictability about my life. However, I have come to realize that it has forever changed, and the wish for a return to stability and predictability has just been wishful thinking. Cancer will be part of my life for many years to come, since I will have to do scans every third month and will be faced with the relapse fear over and over again. 

New Normal

When I was diagnosed, I was abruptly pulled away from a fully active and intense working life that took me all around the globe. All of a sudden, my every day life was spent in a much smaller world, mainly at home, dealing with a potentially deadly decease. At first it was extremely difficult to grasp that I was severely ill, as I felt and looked the same, as the day before I was diagnosed. After having had my surgery in January, it however became obvious how ill I really was. 

Right now I am trying to figure out how I want my life after cancer to be. Earlier, I took my health more or less for granted, but for sure I will need to give my health top priority moving forward. I am currently uncertain how I want to design, what my doctors and other cancer survivors call, the "New Normal" i.e. life after cancer. I do know I want to spend more time with family and friends and that I want to continue working my way through the activities on My Survival List. I am positive that I will find my New Normal, one way or another. I guess, the best approach is to take it step by step and make sure I first fully recover. With Christmas and New Year's celebrations coming up, I will for now focus on enjoying the holiday season with my family!





Saturday, December 8, 2018

#38 completed

Horses, horses and horses

Both my daughters are excellent horse back riders, however their skills definitely do not come from me. I am a lousy rider and somewhat scared of horses. My contribution is being an enthusiastic supporter and driver.

When we lived in Sweden, my daughters and I used to go to the International Horse Show in Stockholm every year. We enjoyed watching the best riders in the world compete in dressage and jumping and, of course, seeing the magnificent horses.

We have maintained the tradition also after moving to Switzerland, by going to the Zürich Horse Show. Due to my surgery in January, it was not possible for me to join my daughters this year. When I realized we could go to the show in Stockholm and get back to our old custom, I booked tickets and off we went!


Competition

At the event this year, I was most impressed by the dressage, where the world's top ten ranked dressage riders competed. We watched the Grand Prix kür, the riders' freestyle program with music.

The winner
It was fascinating to see the horses' movements choreographed to perfection with the music. Each rider had chosen a different type of music, with everything from rock to tango and classical music. The German world- and olympia champion Isabell Werth, with her horse Weihegold, was outstanding and won after an amazing ride. We also got to see the best ride ever done by a Swedish dressage rider, when Patrik Kittel and his horse Delaunay finished second.

Overall, a great day and I am happy to have completed action 38.

Friday, November 30, 2018

#42 completed

So precious

One of the biggest changes, after having gone through my life saving surgeries and treatments, has been the appreciation and gratitude for, what could be viewed as, small and simple things.

Autumn walk
Yes, even things you tend to take for granted, such as taking a walk in the nature or spending time with family and friends. My priorities and focus have also shifted towards here and now, and not putting off activities for "some day". I see this clearly when looking at My Survival List, where I have listed several fairly simple activities, such as having the opportunity to hang out with good, old friends or doing various activities with my family. My plan, certainly is, to make my listed things happen now and not in a distant future.

Post Traumatic Growth

Last week, I learnt that there is even a medical term for, what I am experiencing: Post-Traumatic Growth. The psychologists Richard Tedeschi and Lawrence Calhoun developed this theory, explaining a positive transformation following a life threatening trauma, in the mid-1990s.  According to Tedeschi "People develop new understandings of themselves, the world they live in, how to relate to other people, the kind of future they might have and a better understanding of how to live life".

I definitely agree, this is what I am experiencing! I learned about Post-Traumatic Growth from my psychiatrist, saying that typical traits for people more likely to experience Post Traumatic Growth are openness to experience and extraversion. It is of course positive to know that an extremely negative and traumatic experience such as a severe cancer diagnosis, could lead to something positive. Regardless of that, I would trade my cancer diagnosis every day, every hour and every second.

Christmas baking

Yesterday, I got to do one of these simple, but so precious things: Christmas baking with my eight year old niece and nephew.

Lussekatter
We baked the Swedish sweet rolls (lussekatter) that are a must for every Swede during the Christmas season. The rolls are flavored with saffron and decorated with raisins. A traditional lussekatt is S-shaped. The fun part of baking with kids, is that they do not follow any traditional way, they shape the rolls the way they feel like. This time my niece and nephew made hearts, turtles, snowmen and many other different shaped rolls. We had a lovely afternoon and completed action 42.

Friday, November 23, 2018

Something we should talk more about

The mental impact

Cancer affects your body, but no matter where you have your cancer it will eventually get to your mind. A cancer diagnosis turns your life upside down and it is a nightmare to be confronted with a potentially deadly disease. The mental impact of cancer is something not so often discussed, as the focus is mostly on the more obvious physical side with surgeries, chemotherapies and other treatments.


In my case, being a fact based, target focused, optimistic person, I did not think too much at the start of my cancer journey. I was so focused on doing, doing and doing, which consumed all my energy. Having a major surgery, recovering, going through chemo cycle after chemo cycle, staying strong and trying to get rid of the cancer cells destroying my body from the inside.

It was not until the end of my chemotherapy treatment that I had energy to spare, and could allow myself to think and grasp what my situation really was: stage 4 ovarian cancer. That was a tough realization and I got scared of what would happen, whether the treatment had been successful, if I would survive and for how long. 
This led to a lot of pointless googling, which only made things worse.

Important decisions

My head was spinning, but I took two, for me, very important decisions:
1: seek help and talk to a psychiatrist
2: view myself as a cancer survivor, even though treatment had not been completed


Many people find it difficult and almost tabu to talk about psychological matters. I consider myself a mentally strong person and have lived a relatively easy and straightforward life, not needing psychological support before. I have no problem openly saying that I needed professional support in how to handle my new reality. My loving family has been the best in all aspects, and I have discussed the whole cancer shebang, especially with my husband.


Nevertheless, I concluded that I needed to talk to somebody, who did not know me inside and out and who was an expert in the field. My oncologist recommended a psychiatrist specialized in psycho oncology, i.e. focused on supporting cancer patients. My psychiatrist turned out to be excellent and of tremendous help for me to process and come to terms with my new reality.

Cancer survivor

There is no scientific evidence that optimistic and positive persons have better chances to survive cancer. However, I believe hopefulness and a positive mindset are important components for quality of life during and after cancer treatment. A strong sense of hope is also a prerequisite to live with a disease like cancer, to get through the rigors of treatment, to navigate the complex health care system, and to fend off society’s negative views about cancer as a death sentence.

My treatment had not been finished, and I did not know whether it had been successful or not, but I decided to view myself as a cancer survivor. I know it might sound silly, but for me it was a mental game changer, as I, in my mind, had survived. It did work for me and I felt more optimistic about the future. I decided to search for inspiration to see what other cancer survivors had done to live a fulfilling life. I found Greig Trout's webpage, realized that was the right approach also for me and started compiling My Survival List.

That I would start a blog was not self-evident, as I normally do not like to share my private sphere. However, having family and friends all over the globe, I viewed it as a good way to give updates of my situation. In addition, if my story and thoughts during my cancer journey could serve as inspiration or motivation for one person only, that would feel exceptionally good and rewarding.


Monday, November 19, 2018

#40 completed

The Dancing Robot

The Rite of Spring is a ballet and orchestral concert by the Russian composer Igor Stravinsky. Last weekend, I saw the production at Stadsteatern in Stockholm, Sweden.

I first heard about this performance when a colleague sent me a short film from the rehearsals of the first act. At that time I was still in chemo treatment and not in the best shape. The film clip was captivating, and I decided that I wanted to see the show when I got better.

From the rehearsals
The first act is a newly composed duet between an ABB industrial robot and Henrik “Benke” Rydman, a renowned Swedish choreograph and dancer. The robot is normally used in the industry, mainly for welding and material handling, but in this performance it turns out to be an excellent dance partner. I found it a very cool and fascinating way of showcasing human and robot collaboration, and it felt almost like the robot was a person.

For me, who has worked with robots and technology all my life, it was also interesting to see how the latest software technology had been utilized, to enable the dancer to safely coexist in the same space as the robot.


The Rite of Spring

The Rite of Spring is considered one of the greatest works of the 20th century, a ballet so revolutionary it is said to have caused a riot at its premiere in Paris 1913.

The production in Stockholm is a street dance version of the Rite of Spring (Våroffer in Swedish) with twenty dancers and a lot of water! No riots have been reported yet, but it is a fantastic show. Very powerful and moving performance, about the circle of life. No surprise it has been sold out since the beginning in August.

Thank you Joakim for booking tickets, and thank you Marie-Louise and Hans for a lovely evening! I am very fortunate to have you as friends.

Action 40 is completed.


Tuesday, November 13, 2018

Not a bad hair day

Haircut

Today I had my first haircut in ten months! You might think I am crazy, but for me this is a major event and it means a lot to me. When I started chemotherapy in February, I was told that I would lose my hair. Losing the hair is dreadful and something I think most cancer patients fear. It should be mentioned that not all chemotherapies cause hair loss. It depends on the drugs, number of cycles and infusion time.

The old version of me

Chemotherapy works by targeting all rapidly dividing cells in the body. Hair is the second fastest dividing cell, which is why many chemotherapy drugs cause complete hair loss. Maybe you have heard that you can use a cold cap to prevent or reduce hair loss from some chemotherapy drugs? Before, during and after the chemotherapy infusions, you wear a closely fitted cap, cooled by a chilled liquid, to slow the blood flow to your scalp. This way, chemotherapy drugs are less likely to have an effect on your hair. In my case, a cold cap was never an option, because of the type of chemo drugs I got.




Hair loss

My hair started falling off ten days after the first chemo treatment. I still remember the moment vividly, as I was taking a shower and putting my hand through my hair, and big chunks feel out. I was sure I would have big bald spots, but that was not the case. Instead of gradually seeing my hair falling off, I asked one of my daughters to shave it all off. It was a surrealistic feeling, seeing myself bald. It felt like a stab at my identity, as I could neither recognized myself nor felt like myself any longer.

The bald version of me
As the treatments progressed, I lost more and more body hair, and at the end I only had two eyelashes on one eye and one on the other. In Switzerland, all cancer patients are offered to try out a wig prior to chemo start, and the health insurance covers the cost. I tried out a wig, but I never wore it. At the beginning, after losing my hair, I used head scarves and hats all the time, but gradually I accepted the fact that I was bald.

The toughest thing with being bald was that it became so obvious for everybody I met, that I was ill and had cancer. I felt that I got the "pity look" from many people. I felt as if there was absolutely no reason to pity me. Cancer is cancer, and I have just tried to endure and to make the best out of it.



Return of hair

My hair started growing back about two months after my last chemotherapy. At first it was just a thin, fuzzy hair, but later real hair starting growing.

The new version of me
I have always had thin, light hair but my new hair is a lot thicker. I have also a slightly lighter color and curls! I know that this difference in hair quality most likely is temporarily but I will enjoy my thick, curly hair as long as I can! I have also realized that I have had my parting in the wrong direction for twenty years! 

Thursday, November 8, 2018

Scanxiety

Live and cope with for a long time

For the coming years, I will have to do checkups every third month. For me, the checkup is either a Computed Tomography scan (CT-scan) or an ultrasound scan of my stomach and chest, plus blood tests and a meeting with my oncologist. 

This week I had my first checkup after finished treatment. The time just before the scan and while waiting for the results, is a time of worry and uneasiness. The question: Is the cancer back? keeps running through my head. This worry and tension has even got its own name: scanxiety. In my case, I will have to live with scanxiety for many years. 

It is a bit frustrating that I cannot influence if my cancer comes back or not. I wish my doctor would say "if you eat broccoli and run five kilometers a day, cancer will stay away", but that is unfortunately not the case. I can only hope that I am one of the lucky ones and try to live a happy and fulfilling life.

Celebration time


The outcome of my scan was excellent with no signs of new tumors! A very good reason to celebrate. First, I went to a café with a good friend and had a big piece of chocolate cake and in the evening my husband and I had a glass of champagne. Now I can relax and enjoy the time until the next scan.







Cancer research

I try to ignore the depressing statistics for my type of cancer as much as I can. I focus on the fact that I am alive, that life is to be enjoyed, that statistics are mainly numbers made out of patients older than I am, and that cancer research is making progress day by day. By the way, if you do not already support cancer research, contribute! 

Cancer Research UK Homepage
In Sweden: Cancerfonden
In Switzerland: Krebsliga
In the UK: Cancer Research UK

One out of three persons will get a cancer diagnosis and the good news is that two out of three that are diagnosed will survive! This is mainly thanks to successful cancer research.