Under my skin, part 3

Right now I’m quite busy reorganising my life and blogging less, but that’s for another post. Before I come to this, I want to finish this mini-series.

There’s one point I often think about. Why I am still alive when so many wonderful people are dying or have already died of cancer? Why the young mother of two, or the autor who had so much left to say, and not me? We cancer survivors have to bury those who don’t make it. That’s often hard for me, especially in times when depression strikes.

This is closely linked to the question: What is the meaning of my life? I know cancer can ask this question very loud and unmistakably. Sometimes cancer forces life to change, sometimes it makes people realize they live the life they never wanted. And sometimes it makes people realize their life is wonderful as it is. All of this has its merits. For me, it was something in between, I changed some little things, but nothing major.

Cancer is often painted as black or white, life or death. But it’s not so simple, sometimes cancer adds a lot of colours to life.

I want to give cancer the room in my life it deserves, but nothing more. Keeping this balance is sometimes easy and sometimes hard. What I want to say is: Life doesn’t stop with a cancer diagnosis. I am thankful for all the great people who helped me learn this lesson.

Under my skin, part 2

 

In February my mother learned that her favorite brother-in-law had been admitted to the hospital for palliative care. We knew about his brain cancer, but he had been living with it for years, so we almost forgot. He died two weeks later. This was before Corona struck, so his family could be with him.

Werner – this was the name of my cousin’s uncle – always was an upbeat and optimistic person. For years there was a lot of tension between my uncle’s familiy and our family, but Werner always was fair and made an effort to include us at the familiy gatherings. The last time I met him was at my uncle’s funeral. I saw he was wearing hearing aids and asked him about them. He explained that the radiation treatment for the tumour had affected the auditory nerve. He also was very open about how the cancer changed his life, that he suffered from vertigo and couldn’t ride his bike or drive a car anymore. This talk could have been very sad, but it was everything but. He accepted the limitations, but he went on living as well as possible.

My maternal grandmother died in 2000 of metastatic pancreatic cancer. Since she had had breast cancer in her thirties, she always was afraid the next serious illness was just around the corner. Every sniffle was a sign of a severe disease. I have to admit, at some point I stopped listening. Her doctors stopped listening as well. It’s bad to suffer from cancer twice in a lifetime, but for me it’s also bad that the time between her bouts with cancer was filled with so much fear and sorrow.  There was almost no happiness in my grandmother’s life. That must have been a hard life to live.

Two very different stories… I learned from that we have a choice how we deal with cancer. We can make the best from it, but we can also allow the gloom to take over. People like Werner show us how it can be done. And I will try to listen to people like my grandmother, so they can get rid of their burden, at least a little bit.

Under my skin, part 1

I’m fine, but I find myself thinking about cancer a lot these days, so this is the first part of a mini-series.

It’s summer, which is moodwise a good time for me, as is spring. But it is also the time of the year where I am reminded on a daily basis that I’m at a higher risk to devolop Melanoma (again) than most people. Leaving the house or just sitting on the terrace requires some planning and preperation, like using sun blocker.  As you can see in the picture above, there’s not much tan on my skin, but that’s the least of my worries. I’m not always able to enjoy the nice warm summer days. Sometimes I think “Am I careful enough? Is this time in the sun too much and will cause cancer?”

In February I had a check up with my dermatologist. He said: “It was almost twenty years ago that you have been diagnosed with Melanoma.”

I know he meant well, like “Don’t worry”. But the truth is my life has changed irrevocably with my cancer diagnosis, and I lost a big part of carefreeness forever. It’s not always the others who get cancer… But acting responsibly and protecting my skin means I am confronted with it every day. It’s difficult to steer a middle course: Being mindful and careful is helpful, panic isn’t and makes things even harder.

Sometimes I get angry when I see how careless many people are behaving in the sun, without giving the possibility of getting Melanoma a single thought. I would like to be so carefree again, but I have two scars on my left leg as a constant reminder. And I wonder how many cases of skin cancer could be prevented by being more precautious.

Maybe these thoughts are not so unusual for somebody who survived cancer. Please, bear with us. Even if we have been “cured” from cancer, sometimes there are triggers that remind us of really hard times.

 

May is Melanoma Awareness Month – My Story, Part 4

I didn’t manage to finish my Melanoma Story in May, but I will definitely finish it. I mentioned it here first.
The long story can be found here
May is Melanoma Awareness Month – My Story, Part 1
May is Melanoma Awareness Month – My Story, Part 2
May is Melanoma Awareness Month – My Story, Part 3

Then it was time to begin my inpatient treatment. On admitting day an ECG was performed, the lymph node nearest to the tumor was detected and the lymphatics were marked. Because this hospital was an university hospital, often many doctors-to-be were in the same room, learning about the procedures. I didn’t mind that, doctors have to learn as well. What I did mind was that the doctors-to-be often didn’t take the time to say Hello. I felt absolutely objectified.

Later in the day the surgeon visited me who would perform the surgery on the next day. He wasn’t talking much, but he drew lines on my leg instead.

My husband and I shared concerned looks. The consent form for the surgery,  that mentioned “death” as a possible side effect, didn’t help either.

At the evening a pair of antiembolism stockings was adjusted and I was giving an antibacterial shower gel for the next morning. The night was ok, due to a sleeping pill.

On the next morning I learned that I my surgery was scheduled first, so I didn’t have to wait long. I was given a sedative, and my room neighbor and I watched some TV. My room neighbor’s surgery was scheduled after mine, so she was nervous as well.

The surgery itself went very well. The epidural and the sedative worked beautifully. I listened to music, and everybody gave me the feeling I was really looked after. In recovery I alredy felt the feeling in my legs coming back.

A few hours later, I was able to walk again. The surgeon came along at moon and told me that they were able to get everything out and that the lymph node “looked well”. But he couldn’t answer my most urgent question: “Why?” He suspected that the cancer had been growing for about a year. That explained why I had felt so worse in the last few months.

But another question began to grow in my head: What now?

~ To be continued ~

 

May is Melanoma Awareness Month – My Story, Part 3

During May I will tell my melanoma story. I mentioned it here first.
The long story can be found here
May is Melanoma Awareness Month – My Story, Part 1
May is Melanoma Awareness Month – My Story, Part 2

The doctor explained to me what she called “standard procedure”, “usually we treat this like this”: Wide excision (cut more tissue away from the original tumor), and sentinel lymph node dissection (look for cancer in the next lymph node). She didn’t wait for a reaction from me, she gave me a piece of paper and told me to go to another ward for inpatient treatment. Her last words to me where: “And don’t let them just send you away!” I remember that made me angry.

On the inpatient ward I was not the only one waiting for a date to be admitted. The patient next to me complained about her bruises, that could not be explained. Shock had set in, I had started shivering and just couldn’t stop it. I wanted to yell at her: “And I have melanoma, so just shut up!”

At least my inpatient treatment was scheduled for the next week without any hassle.

Then came the worst part: To tell others.

I stood crying at the train stop and talked to my husband at the phone, who worked in Cologne at this time. We agreed I would pick him up at work and we would drive home together. I wouldn’t have managed to go home by myself.

I must have called my employer at some point and told them I wouldn’t come in this day, but I don’t remember this.

Then I stood before my husband, still sobbing, and his boss told him just to take me home, so he did.

I wanted to tell my parents later in person, we had set up an appointment weeks ago.

At home I realized we wouldn’t be going to Malta next week. More bad news. But my husband and I agreed: Health comes first, cancer treatment is more important.

On the next day I went to work. We agreed I wouldn’t come in before my hospital stay and that I would call in later, when I know more. One colleague said, she would have gone on vacation if she were me, to recharge. But I would not have been able to enjoy the vacation knowing what lies ahead of me. And there was this voice in my head saying: ” Do it NOW!” Putting of treatment never was an option. And so I said goodbye to my colleagues.

 

I told my parents a few days later when we were having them over for coffee and cake. We had wanted to meet one more time before our vacation. Well, the occasion had changed. My parents didn’t know until then people die from melanoma. But they kept the shock to themselves.

After everybody knew, all I had to do was waiting for the treatment to begin.

~ To be continued ~

 

May is Melanoma Awareness Month – My Story, Part 2

During May I will tell my melanoma story. I mentioned it here first.

The dermatologist’s office was in downtown Cologne, the doctor turned out to be a young, thorough woman. She wasn’t sure what to make of the birthmark. So she prescribed an ointment and advised me to go to the University Hospital to get a second opinion. “Just to be on the safe side. Because of your age it’s very unlikely this is melanoma.”

The skin clinic of the University Hospital had an open consultation once a week. With long waiting times. They agreed with the opinion of the dermatologist: “It’s unlikely it’s melanoma. But we suggest doing a biopsy to be sure.” I was given a date for the surgery, the birthmark was photographed, and I went my way.

The biopsy went without a hitch, I drove to work right after the procedure. There was a lot of work to do, I would be on holiday after the next week.

In the week before our vacation, I got a letter. I should come to the University Hospital once more, to discuss the results of the biopsy.

I was feeling very strange during these weeks. On one hand, there was this strong feeling I was doing the right thing having the birthmark examined. On the other hand, there was a wall between me and my feelings. I was not in a state of constant fear to be really ill. I just went on with my life, without permantly worrying. The proverbial calm before the storm.

So I went to the skin clinic once more. The doctor – I remember this very vividly until today – just asked me:

“What do you know about melanoma?”

Crash! The wall came down.

~ To be continued ~

 

May is Melanoma Awareness Month – My Story, Part 1

During May I will tell my melanoma story. I mentioned it here first.

In my opinion this kind of cancer is still very underestimated. Once melanoma has metastasizesed, the prognosis is very bad. Melanoma is agressive, and it spreads early. The survival rate of over 90% leads to ignorance, and precautions are not taken as they should be.

I am not the typical melanoma patient myself. One, I was 29 and quite young when I was diagnosed. Two, until today every dermatologist points out that my skin has little sun damage. As a child, I preferred the shadows to sunlight, and we didn’t always got to southern Europe on vacation, we often stayed in Germany.

The first sign things weren’t right appeared in winter 1999/200. I lost weight, but I thought this was an effect of me going to the gym three times a week.

In February 2000 I had a middle ear infection, the first since my childhood. It was in the right ear, where I am wearing my hearing aid. Antibiotics, hot water bottle, everything alright within a matter of days. Sh*it happens.

In Spring 2000 I had a really nasty infection in my ear canal. Antibiotics and antifungals didn’t work. Finally very drastic measures helped – not wearing the hearing aid for one week and having a piece of bandage with antibiotic ointment in my ear all the time. But we really had much stress at work.

Summer came, and I was so tired I fell asleep while working – more than once. I really was in need of a vacation. We were supposed to go to Malta in August. We never made it.

Then there was this thought in my head, and I couldn’t get rid of it: A nagging feeling that something was not right with the birthmark on the inside of my left ankle. For some weeks I was unsure if I should see a doctor just because of a feeling. The birthmark did not itch, ooze or bother me. It wasn’t that big either, like the rubber on a pencil. But then came a feeling of urgency. I called dermatologist after dermatologist, until I was squeezed in because of a cancallation.

~ To be continued ~

More black

It is no secret that a black dog named depression follows me around persistently wherever I go. But there is another thing in my life that is symbolized by the colour black: melanoma. 

In the summer of 2000, I just had turned 29, it was discovered that one of my birthmarks had developed melanoma. Before I fully realized what was going on, I was admitted to a hospital and had surgery. First, a wide excision was performed on my lower leg where the birthmark was located, and second, a sentinel lymph node biopsy was done in the groin area to determine how far the cancer had progressed.

I was lucky, the cancer hadn’t spread. But I developed lymphedema in my leg from the knee down because lymph ducts had been destroyed during the surgery. So I had to use bandages for the first weeks, and wear compression stockings for six months after the surgery, day and night. Once again I was lucky, the swelling was temporary. 

Permanent are the scars on my body and my soul. Sunshine ist no longer a sign of a carefree time outside, it’s a risk I have to take. I worry about the right amount of sun protection. Every check up at the dermatologist has me worried sick. Today was no exception, but at least everything looks good. Phew. During the next days, my anxiety will go down to it’s usual post-melanoma level. But I never will be so happy-go-lucky as I was before my encounter with cancer. It is not something that is happening to other people, it’s part of my life, too.

I talk openly about what happened to me. Nevetheless I have to remind my husband to use sun protection lotion, my mother-in-law still goes to the tanning salon and friends return from their holidays sunburnt. My impression is that the danger caused by melanoma is not fully realized yet here in Germany. Yes, the prognosis is very good if it is caught early, but the truth is, people CAN die of it. There are many stories, one is those of Emma Betts  from Dear Melanoma. This story has no happy ending, but it is also a story of courage and love. Everyone who still doubts the cruelty of suffering from advanced stage melanoma should read it.