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!

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.

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! 

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! 

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.

Bye-bye Davos

Time to reflect

I have earlier written about the strength I get from being in the nature, see link.

Autumn colors

During the weeks I spent in the Alps in Davos, this became even more accentuated. As I was on my own, away from family and friends for a longer time, I had plenty of time to reflect and to try to really grasp what I have experienced during my time of illness. It for sure has been a roller-coaster ride with demanding surgeries and treatments, but also plenty of joyful moments together with family and friends. I have learned a lot about myself and how much I physically and mentally can endure and yet manage to be happy and optimistic.

Three seasons in a few weeks

Davos showcased three seasons: summer, autumn and winter, within just a few weeks.

Winter in Davos

When I arrived, it was 25 degrees and I could sit outside at the terrace in T-shirt and shorts. A few days later autumn struck with lower temperatures, clear, bright sky and the leaves changed color from green to yellow and orange. When I left, it was winter, -3 degrees and lots of snow. The skiing season will probably start in just a few weeks. Davos offers plenty of slopes for alpine skiing and it is also well-known for its cross country tracks. 

New friends

I have been fortunate to have met some fantastic people during my weeks of cancer rehabilitation. Without them, my time in Davos would not have been filled with so much laughter and fun. They have encountered life threatening diseases and have gone through tough surgeries and treatments, but all of them are optimists and really know how to appreciate the beauty and joy every single day brings.

A big thank you: Franziska, Katharina, Nurcan and Sandra for who you are and for the great time we spent together. See you soon!

Summer in Davos (Sertig Tal)

A new door!

Away from work

I have been away from work for a long time now. During spring, I managed to work between the chemotherapies, but the sixth and final treatment hit my body hard. Since then I have been on 100% sick leave.

One of the cities work has taken me to

I have always been passionate about my work, have enjoyed managing my team and working with customers. Returning to work has felt important but double-edged: motivating but lately somewhat stressful. Recently, I have come to realize that recovering from chemo is going to take a lot longer than I first had thought and anticipated. My doctor's mantra has been: "Every patient is unique and it is impossible to foresee how long time it will take for you. Be patient and take it step by step."



As you might know, patience is not my strongest side. I guess I had always thought I would be one of the few lucky ones, who would have a quick and smooth recovery. Accepting that I would need more time to recover and prioritize my health, led to the decision that I could not keep my company and team in waiting mood for an extended, undefined time. Therefore, somebody else needed to take over my position.

My new door

Realizing that I would not come back to my current position has been tough. I felt I did not take the decision, my illness took it for me. Processing that has taken time and my feelings have gone from failure and grief to acceptance and finally to be more forward-looking and excited. This week my successor was appointed and it has been made official that I am not coming back to my position. I am of course still employed and will have a discussion with my boss about new opportunities when I have fully recovered and I am ready to start to work again.

The quote below says a lot, and I firmly believe that a new door has opened and there is no point in looking back. Now I just need to find my door!

Thank you modern science!

New surgery

Last week, my stomach felt swollen and aching. The pain quickly escalated until it was unbearable and my husband had to take me to the emergency room. My first thought when the symptoms started was that my cancer was back. Excruciating pain and negative thoughts about cancer relapse is a horrible combination. Luckily, I was given pain relief quickly, so I could focus and think more rationally.

In the hospital

After an emergency CT-scan, a small bowel obstruction was found. It required immediate surgery. The surgeon stated that it would be necessary to start with a laparoscopic surgery and depending on what they would see, sufficient actions would be taken.

Fortunately, the obstruction was caused by an adhesion (a band of scar tissue). The adhesion had come from my cancer surgery in January. It was removed and no other surgery was needed. While doing the laparoscopic surgery, the surgeon also double-checked to make sure there were no signs of cancer. Indeed, very good to hear!

Saved again 

Within nine months I have undergone two life saving surgeries. The medical techniques and tools used, are innovations that have not existed that long. It is mind-blowing to realize that I would by now be dead, not only once but twice, if I would have been born 25 years earlier.

This recent experience gives me even more motivation and energy to continue focusing on the important things in my life: family, friends and My Survival List!

Bye-bye Sweden

Silver lining 

I had a wonderful summer in Sweden. First a few weeks together with my family in our summer house and then a couple of weeks on my own, visiting and meeting my Swedish friends in Västerås, Göteborg and Linköping.

My family and friends' help and care have been a silver lining in the dark cloud of my illness. I am truly grateful to all of you who did reach out and who had the courage and strength to support me. It has meant the world to me! 

Friends have always been important to me, However, during the tough months of illness, I have even more come to appreciate and value good, close friends. I am thankful to have many persons both in Sweden and Switzerland to have good and deep conversations with and of course also to relax and have fun with. 

Time with friends

One of the things I had missed the most during the last seven months, was meeting my Swedish friends. The last two weeks, I have really taken the opportunity to catch up and I have enjoyed dinners, glasses of champagne, 50 year birthday celebrations, coffee, deep conversations, long walks, laughs and of course your company!

A big thank you to my parents, Annika, Else, Johan, Marie-Louise, Lotta, Jonas, Ulrika F, Ulrika C, Vibeke, Stephan, Micke, Helena, Maria, Urban, Ylva, Karin, Patrik, Hasse, Johanna, Niclas, Tina, Joakim and Hans: you are the best!

The Best News!

No traces of cancer

A CT scan (computed tomography) is performed to determine how successful chemotherapy has been. I had my scan a few days ago and today I had a meeting with my oncologist, to discuss the findings and further treatment. I was nervous before the meeting, but I got the best possible news: no traces of cancer! Yippee! I can now fully focus on relaxing, recovering and enjoying my summer!

Next steps

I still have a way to go, to physically recover, as chemo has hit my body hard. Blood values are still low and I am tired and worn down from chemo. I have been 100% concentrated on staying strong and optimistic through all my treatments. My doctor has prepared me for the possibility that emotions put aside might come flooding back. I think it is good to be aware and if that happens I will face those emotions and deal with them at that time.

Ovarian cancer has a relatively high relapse risk, and frequent follow-ups will be needed during the coming years. For me the first follow-up will be done in October. However, today I am super happy and I am enjoying the best news I could get: I am free from cancer!

A forever ongoing action

Strength from Nature

I have always enjoyed being outdoors, especially where there is real nature such as forests, mountains, lakes and the air is fresh. Even better if the view is nice, as it often is in Switzerland!

In the mountains in Lenzerheide

After I got ill, nature became even more important. As the surgery and the chemotherapy treatments hit my body hard, it has been essential to regain physical strength. The best way for me has been to walk and challenge myself by extending the walks little by little, day by day. It has been pivotal to stay mentally strong and keeping a positive mindset, no matter what. I strongly believe in the power of the mind. Our emotions and feelings are greatly influenced by our thoughts about a situation. It is often easier said than done to keep negative thoughts away and letting the positive thoughts rule the state of mind. I have found it very relaxing and comforting to walk in the forest and listen to the sound of running water and chirping birds. It has been my way of putting negative thoughts aside, finding strength and staying positive.

Nature around the corner

I am fortunate to live just a short walk from fantastic nature with a beautiful, luscious forest and country side with green, rolling hills and grazing cows. As a born nature lover, I will always draw strength from the nature and from the simple pleasure of being outdoors. This gives me the mental strength needed to fight cancer and continue doing the things I love. This action will be forever ongoing!

Joyful things to look forward to

Graduation

Today my Survival T-Shirt arrived! The delivery was a lot quicker than I anticipated.

However, there where not that many things I could attempt to start this week, as I am still weak after Monday's chemo. I try to rest and watch Netflix, to save energy for one of this year's biggest family events: my oldest daughter's high school graduation! The festivities start tonight with a boat party on lake Zürich with students, families and teachers. We look forward to tasty food, drinks and great music in a beautiful setting to celebrate their achievements. On Saturday, the official graduation ceremony will be held at a conference centre by the lake. I look very much forward to having family and friends from Sweden joining to celebrate with us. I expect this ceremony to be more formal and staged than a Swedish one, as my daughter and her fellow students need to rehearse, how to walk and stand, not only once but twice. It will definitely be an exciting and joyful weekend!

Important milestone

Chemo completed

Today I had my sixth and hopefully last chemotherapy. It feels great to have completed this phase of my cancer treatment! Chemo has been controlling and setting the pace for my life for the past four months, with one infusion of chemo drugs, then three weeks of recovery, before the next infusion and so on. I have not been allowed to travel and should only have limited contact with bigger crowds of people, to reduce the risk of infection. Infections could potentially be life threatening as chemotherapy drugs drastically reduce production of white blood cells which are vital for the body's infection defence. 

Last chemotherapy

Side effects

When most people hear about chemotherapy, they think about the nasty side effects. Chemo is definitely not a walk in the park, and I sincerely hope, I never ever will have to do it again. Luckily my body has coped relatively well. The first week after treatment has been rough with extreme tiredness and the feeling of having been ran over by a truck. Food and drinks have a bad taste of iron along with nausea. Fortunately, the medicines I take, have curbed the nausea quite well. During the second week, most of the side effects have gradually vanished and I slowly recovered. Followed by a relatively normal third week. Every chemo has been hitting my body harder and harder, thus making recovery increasingly difficult.

Celebration

Milestones should always be celebrated and my motto "Tomorrow it may be too late. Live, think and act for today" followed. However, today's chemo makes it impossible to celebrate the way I want, hence saving the champagne for the weekend. By then I should feel better. Anyway, chemo is finally over and I am smiling. Cheers!

Celebration time!

Getting inspiration what to do when I survive

Positive inspiration

I am a cancer survivor! When realizing that fact, I needed positive inspiration. A lot of people talk about things to do before you die and making bucket lists. However, that did not resonate with me as I felt I needed something more positive. When looking for other ideas, I found Greig Trout's website. Greig is a two times cancer survivor and he found that having things to look forward to, and proactively working towards them, was imperative to him surviving cancer and the psychological effects that came with it. He created the list: 101 Things To Do When You Survive.

Greig's optimism and positive attitude inspired me and I decided to do something similar, hence My Survival List.

What is My Survival List?

My Survival List is my personal list of things I want to do, starting now and not putting it off to when I retire in 15-20 years. Right now I have 31 things on my list and I will keep adding things day by day.

I do not know what will happen tomorrow, in two years or in ten, but I know I will start doing the things on my list and making sure I am happy doing so.

If somebody else gets inspiration from my story and start doing things he/she likes, that would also be fantastic!