Saturday night, three weeks ago. I went out at about nine o clock, meeting some friends. At eleven o clock I felt I could be getting a cold. At two at clock at night my voice had become raucous. At about four o clock I went to bed. When I woke up, I was hardly able to get up anymore. Three weeks later, I am still sick. I have been through tonsilitis and bronchitis. The cold season for me doesn’t mean that the weather is getting colder. It means that I am constantly cold – and sick. Yesterday I fainted again – for the first time in months. I fainted in the toy department of our local shopping mall and my toddler was nearby. I hate it when my kids have to watch my circulatory failures. The older ones are already used to it, they even offer me their arm or carry my bags when they realize that I am struggling. But my little one does not understand those incidents yet.
Fainting made me realize that I had to blog again. The last months have been great. It is getting colder now and CLL is knocking at the door again.
I love summer. Not only, because my birthday is in summer. Not just because of the holidays. I love summer, because I am not sick all the time in summer. In fall, each cold leads to a bronchitis and each bronchitis leads to the next one. It goes on and on until spring. In spring and in summer it is much easier for me to forget that I suffer from CLL. True, as I live in a warmer climate, my health condition has improved tremendously. At least I do not develop pneumonia or influenza as I did before when I lived in Central Europe.
Today my youngest son graduated from kindergarden. I have shed so many tears this morning, when I saw my two year old boy amongst his buddies, receiving his “diploma”, some sweets and his graduation hat. Three years ago, I was not even sure whether I would be alive in 2018 … and it was uncertain whether I would be able to keep my baby. The pregnancy had been – to put it mildly – rather rocky. Today, during his graduation ceremony, I thought about some of the most difficult situations:
The miscarriage I had suffered shortly before he was conceived.
The joy I felt when it was confirmed I was pregnant again. (I didn’t hear the “but” when they told me….)
The shock I had when I heard I had cancer. When I was told I would probably not be able to keep the baby.
The terrible time of waiting for a more detailed diagnosis, especially some sort of outlook on my life expectancy, possible treatments and my future quality of life. I was also anxious to know more about my baby’s health risks – would he be born with cancer?
The dreadful decision my husband and I made: we would only keep the baby if I was to live at least five years more. This is the moment I thought most about today. And I just kept crying.
The discussions about having chemotherapy during pregnancy. Of having a bone marrow transplant right after birth using the baby’s stem cells. (One of the most absurd moments. I don’t even know if I understood what my doctors wanted to tell me from a medical point of view. But hearing the words “Bone marrow transplant” and “birth” in one sentence just made me feel extremely uncomfortable.
The relief when I was told that I could keep my baby. (During my fourth month of pregnancy. Before I had been told during three long months: “Try not be happy about your pregnancy.” A very strange advice for a pregnant mother, even if she has recently been diagnosed with cancer, from my point of view)
The shock when it turned out he only had one artery supporting him with all he needed and the potential implications. ( I heard that during my fifth month of pregnancy I think)
I calmed down again. Then, when I was eight months pregnant, I was told his heart looked malformed – he would probably die immediately after birth or need intrauterine surgery.
The specialists we had to consult to find out more about the baby´s heart. And the day when they told us it was okay.
The day he was born. He was tiny, but perfect. And he continues to be perfect, although he has grown up.
I hope to see many more graduation days: preschool, primary school, secondary school and maybe others as well. I want to be there for him because I love him so much.
After crying my heart out today, I started to smile and to enjoy the moment. Because my son doesn’t deserve being linked to my chronic disease anymore. He deserves hundred percent of happiness and pure joy.
All my life long it has been my motto to try everything at least once. To risk everything once – although I might not do it a second time if it is too frightening. When I talked about my ideas with others, I always mentioned skydiving as an example of something I would do without hesitation. I have never done it though. Not yet. Some weeks ago, my son was fed up with studying for school. He could not see any use in the things he was learning and felt it was taking to much of his precious time. I tried to motivate him, but during exam season it is complicated to find the right words.
In the end, I came up with an idea that made us both feel better. I had just started a new sugar free diet. All I could think about was chocolate – and my children knew it. As they sometimes worry about me having cancer, I explain the diets and therapies which I try to them.
I told my son: “Look, you know I have just started this dreadful diet. I don’t like and maybe it won’t even help. But I have to give it a shot. And so do you. You might never need all the things you are studying right now in future. Yet, you never know.”
I proposed a deal – the skydiving deal. As soon as he graduates from high school, I will go parachuting with him. Until then I will take the very best care of my body to stay healthy enough for our adventure. And he will study hard until he graduates.
We are both extremely satisfied with this deal. We remind each other of our common goal. I love it when he says “skydiving” whenever I longingly stare at the sweets in the supermarket. It really helps! And I am looking forward to experiencing free fall together with my son.
It has been three years since I was diagnosed with CLL. I often wonder in how far my health condition has deteriorated since then. The lab results are an important indicator, of course. But the strength (or weakness) of my immune system is equally important. In general, CLL patients whose immune system has become really weak suffer from pneumonia various times per year. Three times in twelve months and you are ready for serious treatment is something I hear from American patients quite often. Night sweats, yeast infections and inexplicable fevers are other indicators.
I have not had pneumonia in a long time now (and I cannot tell how grateful I am!), but many other respiratory diseases. Tonsilitis, sinusitis,…you name it – I have had them all several times in the last few months. My night sweats are coming and going – and so are my yeast infections.
On the whole though I feel surprisingly fine. One of the reasons is my lifestyle: I live in Southern Europe, where life takes places outdoors all year long. I don’t need to spend time in tramways or offices with many people as well as virus and bacteria. In our house, we do not have a central heating system installed. It is not necessary here.
When I go to Central or Northern Europe during the colder months, I get sick immediately. My lungs cannot stand the dry heated air indoor.
As leaving my home country in Central Europe and my diagnosis of CLL coincide more or less, I sometimes ask myself if my disease would be much more noticeable had I continued to live there.
I believe the Mediterranean climate is like a therapy for me. I have everything under the sun. And I feel extremely blessed! I still suffer from fatigue and I have not found a remedy against it yet, but I promise, I will!
A few years ago, my approach towards medicine and healing was straightforward and rather simple. I took paracetamol when I felt bad and I took antibiotics when I felt really bad. I did not scrutinize, nor did I bother to read about alternative therapies. My lifestyle was not as healthy as it could have been. Although my immune system was rather weak already, I did not care enough to make any radical changes or get to the bottom of my health issues. All this changed, when I was diagnosed.
All over a sudden, I started to care about the food I was eating. (I would say that I have tried at least a dozen of anti-cancer diets so far.) I started to wash my hands more often, to see my dentist more regularly and to worry about antibiotic resistance. I bought loads of vitamins and supplements – and threw away half of them.
I think I am one of the few CLL patients who does not know all his laboratory blood details by heart. This is because I have made a conscious decision not to think about the deterioration of my physical strength all the time. When I was in the waiting room of the department for hematology and oncology once, the patients started discussing their different blood parameters with each other, showing off detailed excel sheets they were keeping (sometimes for decades!) and analyzing specific blood levels with expert knowledge. It was there and then that I decided not to become addicted to those numbers.
I have a vague idea about the level of my leucocytes and other important indicators right now, but I care much more about the way I feel. There is a fine line between keeping a close watch the different symptoms, ailments and changes of my body and becoming obsessed by them.
I am part of different CLL patient support groups, so I read a lot about other spoonies’ health problems. If I don’t find myself suffering from them as well, I worry that I might in the future. It’s a vicious circle and I am trying to break it by discussing it with my family and friends – sometimes a bit hysterical, but mostly ironical or even cynical. I am always calmer afterwards.
I do not recommend my nonchalant attitude to you. I just know that I could spend my life panicking all the time, because I suffer from cancer. And too much panic can’t be good for me either, I guess. I don’t ignore my chronic illness, nevertheless I am trying not to let it cause permanent anxiety.
I WOULD panic on the Titanic, but my ship is not sinking yet!
Have you ever wondered how the different star signs deal with cancer? Or how Mr. or Mrs. Cancer copes with them? Then read on….
(For additional resources on how to accurately and non-discriminatory report on Mr. or Mrs. Cancer by protecting his or her age, color, culture, disability, ethnic, gender, medical condition, nationality, appearance, race, religion, sexual identity, sexual orientation, or social class please see “on Cancer”)
ARIES are known to be natural born warriors. They will regard their cancer diagnosis to be the ultimate challenge. Their fiery nature helps them being motivated during the battle. They will keep on fighting until the end. If I were Mr. Cancer, I would certainly not choose an Aries for an enemy.
TAURUS is an Earth sign, enjoying food and physical comfort. Their body and the pleasures it provides mean a lot to this star sign. If this body is ailing, a Taurus will rather turn to chicken noodle soup than try out alternative diets. The endurance and perseverance of Taurus should not be underestimated, so I would not choose Taurus for an enemy if I were Mrs. Cancer.
GEMINI is an upbeat, lighthearted air sign with a strong need for news and information. If they are diagnosed with cancer, they will find out everything about it and manage to get access to the most up to date and relevant medical treatment. Their mental creativity knows no limits – so if I were Mr. Cancer I would think twice before choosing a Gemini for an enemy.
CANCER is one of the most emotional star signs. Its element is water; an underrated weapon. In the long term it will find its way through any obstacle and demolish them bit by bit. Just wait and see: If Mrs. Cancer attacks her enemy for psychological reasons, as some people tend to think, she will probably drown in the ocean of feelings of a true Cancer.
LEO knows that the world is a stage, and each must play his or her part. But this fiery sign will always go for a happy ending, so Mr. Cancer simply doesn’t stand a chance. Dragged to the stage where Leos are the undisputed heroes, Mr. Cancer’s part is reduced to be a little villain.
VIRGO is such a sensible and health-conscious star sign. They will probably prevent a fight with Mrs. Cancer in the first place by having regular check-ups and choosing a wholesome lifestyle. Mrs. Cancer loves sugar? Virgos will reduce their sugar intake to zero in a blink of an eye. Should Mrs. Cancer decide to opt for a Virgo, she must prepare for lots of suffering and eventual defeat.
LIBRA, this lovely and level star sign, seems too good to be true. No wonder its love for romance and beauty are attractive for the whole zodiac. In case Mr. Cancer falls for Libra, he might be balanced out of his enemy’s life in such a charming way one couldn’t possibly call it a battle.
SCORPIO is a star sign that shouldn’t be taken lightly. It’s “either-or” for them. Should Mrs. Cancer attack it is rather evident that she will lose against this courageous enemy, who might not win each battle, but usually wins the war in the long term. Scorpios have tremendous regenerative powers and are extremely resourceful. Beware, Mrs. Cancer!
SAGITTARIUS is the most philosophical star sign of all. When attacked by Mr. Cancer, this fiery sign will search for a meaning at first. Optimistic and powerful, Sagittarius might end up with the conclusion that Mr. Cancer was meant to be demolished. And then they will go for it. If I were Mr. Cancer, I would not chose a Sagittarius for an enemy. Prepare for some existential angst!
CAPRICORN is known to be extraordinarily ambitious and tough. This earth sign never gives in – ever. It just continues its path up to the mountain’s peak, apparently unbothered by minor battles and defeats. If I were Mrs. Cancer, I would not choose a Capricorn for an enemy, because the air up there in the mountains can be rather thin.
AQUARIUS is the rebel of the zodiac. You never know what this air sign is up to – if attacked by Mr. Cancer, they might start to “be-friend their disease” or alternatively “fight cancer with lollipops”. It does not really matter which weapon these original people are going to choose – they will certainly surprise Mr. Cancer all the time until he simply gives in.
PISCES…. you might say, they are dreamers. And you are right. But the fantastical world of Pisces seems to be more real than reality sometimes, so watch out, Mrs. Cancer! In astrological symbolism there are two fish: one going left, the other one right, which makes them a bit difficult to catch for Mrs. Cancer. If she gets hold on both (which is rare, as one might swim in the water, the other fly up in the clouds) she will have to face the fact that they are extremely slippery.
A few years ago, I would have defined “achievement” in a different way. Being chronically ill, I have learned to set my goals with greater flexibility. Looking back at this year which is soon going to end, I see that I have done all the things that I wanted to do, although I had to alter my schedule various times.
Of course, this is extremely frustrating for me.
First of all, I am terribly impatient. I love to get things done, I want to get it over with and move on. Bad luck. My life has changed and I have to adapt to its new rhythm.
Second, there are some chances you only have once in lifetime, some windows of opportunity which open for a short while and close again. It is still hard to let them pass now, but sometimes I must. I try to take a long view and weigh their advantages and disadvantages carefully. Surprisingly, concentrating on a few open windows can be more rewarding than getting lost between a dozen of opportunities. People used to tell me so – now I can finally see it.
Third, there is the aspect of shame. I feel ashamed when I stay in bed, sleep and cure my infections. Don’t say: “But that’s normal!”. It is okay if you are sick a couple of times per year. It isn’t normal any longer when you are sick half of the time. It is hard for me to acknowledge that I am not the person I used to be. My ambition has not been reduced, but my energy level is lower. I don’t like this at all and I don’t think I ever will get used to it.
My willpower still works as a starter motor, which is great. My timeline, though, is not as stretched and straight as it used to be. It is more like a chewing gum: Sometimes compressed and thick, then extended and thin. The basic raw material is approximately the same, but more elastic. By being flexible I still manage to achieve my goals and I am proud of it.
It might sound crazy to you, but for many spoonies getting out of bed each day and having a shower is an achievement. I can get more things done normally, but on some days leaving my bedroom is like running a marathon. I know that when the time comes, I will have to be flexible enough to adapt my plans even more.
When I became a chronic illness patient after my diagnosis, it took me a while to realize I was part of the „spoonie community“. I found out that such diseases rarely come alone. Most of the patients seem to have a whole catalogue of afflictions. I don’t. I have CLL and my immune system does not really deserve its name, but that’s it. However, once you are a spoonie, chronic health issues seem to pop up everywhere.
There are some ailments people tend to be more open about like neurodermitis and asthma. Recurring depression is often labelled as “burn-out syndrom” as being overworked seems to be a more acceptable condition in modern society than being melancholic. People who suffer from Morbus Crohn, an inflammatory bowel disease, are straightforward about their suffering when I tell them about myself. Otherwise, it is pretty taboo. I have only listed a few of the many illnesses I am surrounded by. As a matter of fact, I could go on forever. Ever since I started writing this blog people around me have come out of their closet with various health problems.
And I don’t have to look far: In my huge extended family there is a whole range of maladies from A as in arthritis to Z as in zoster. Being immunosuppressed is hard for me sometimes, but sharing my life with and caring for my beloved ones who suffer from dementia, Morbus Bechterew, cardiovascular disease, Lyme Disease, rheumatism, skin cancer, prostate cancer or who struggle with obesity, ADHD, migraine, sleeping disorders, colitis ulcerosa is even harder. My CLL is not at the center of our family health issues, but rather part of a huge mosaic.
Watching my kids go through puberty is much more complicated than watching my symptoms, I must admit. But having someone at my side who suffers from chronic pain is still worse. Those around me who experience chronic pain always stress how much it affects their daily life and even their personality. They say that their character is re-shaped by their pain, which I find frightening. Studies show that cancer patients who suffer from depression as well consider mental illness a lot more straining. Unfortunately, they often go hand in hand.
The word “cancer” still strikes a chord of fear in most of us, although it is not necessarily the death sentence it used to be. Forget it. It’s not all about cancer. I feel with you, if your life is affected by so-called minor ailments. Why? If you have ever tried to lead a conference when having a migraine or to go through an important negotiation while suffering from diarrhea, you probably would not call them “minor” anymore. My heart goes out to people who are lost in the black hole of depression, to those who are experiencing chronic pain day by day and those whose are losing their memory and mobility are slowly but surely.
We cannot measure the amount of suffering another person has to endure. But we can stop comparing and show empathy. Because at the end of the day, we are all in the same boat – sometimes it is rockier on one side and sometimes on the other.
I have always had a weak immune system. Antibiotics have often saved me. I never questioned those physicians who prescribed them generously to me over the course of the years. No wonder. Antibiotics have always worked for me – so far. But what if they don’t anymore? What if a patient develops resistance?
My fears are not unsubstantiated at all. Ever since the discovery of antibiotics in the 20th century they have proven to be a tremendous boon and saved countless lives. Nevertheless, hospitals all over the world are facing a growing number of infections caused by bacteria which are resistant to antibiotics now. This is a serious challenge for them. Microbes have exceptional genetic capacities. Those superbugs have developed various mechanisms of resistance; they can literally outsmart the drugs.
I know that immunocompromised patients in general and people receiving chemotherapy (as those who have undergone surgery or who need dialysis) are highly susceptible to infections caused by antibiotic-resistant bacteria. And suddenly, instead of being glad about the antibiotics my doctors prescribe to me I am scared.
My fears are well grounded and shared by the experts. I had a look at the “Review on Antimicrobial Resistance” and the final report on tackling drug-resistant infections globally . An estimated two million people in the United States develop infections that are resistant to antibiotics. Sometimes they lead to their death. In around 30 years more than ten million people might die from untreatable infections each year. Cancer causes about the same number of fatalities globally in twelve months. The economic damage from drug resistance might be even more dramatic than the impact of the 2008 financial crisis according to the World Bank.
We are as used to antibiotics as to running water, electricity, modern transport facilities and wireless communication and take them for granted. However, we have not only overused antibiotics for ourselves, but also for livestock farming. The World Health Organization recommends limits for their use in livestock. Farmers must not hand out antibiotics to animals which were designed to treat diseases in people.
But what can you do?
• One of the best things you can do to prevent infections with antibiotic-resistant bacteria is to get vaccines (against influenza, tetanus, whooping cough, pneumonia, meningitis for example) and to wash your hands regularly. Hospital hygiene is an issue as well. Be on your guard!
• Only use them against diseases caused by bacteria. They wont help if you have a virus infection. It is estimated that about 30 millions of antibiotics prescriptions annually are pointless. Those incorrect prescribing practices may not only lead to drug resistance, but can cause side effects like allergic reactions and serious diarrheal infections. too. If you are not certain whether you are suffering from a viral or bacterial infection, watch and wait (while treating the symptoms) until you start taking antibiotics.
• The intake of broad-spectrum antibiotics as a cure against everything from pneumonia to abscesses is unrewarding on the long term. You can ask your doctor to test which type of antibiotics you need. It is recommended to ask for the shortest course of antibiotics. A treatment of three days can be as effective as a 14-day treatment in many cases.
• If you must take antibiotics, finish them – even if you start feeling better. Don’t stop before or you are more likely to develop resistance. This does not mean taking all the pills you have, but taking the exact amount your specialist has prescribed to you.
• Don’t save antibiotics for your next illness and be sure to take the ones which really treat the disease you are suffering from.