Don’t get us wrong, we are not specialists in oncology, but we consider ourselves specialists in technology that helps families live a better.
This 4th of February it is celebrated the World Cancer Day. And in #TheNowFamily we thought that instead of bringing you numbers and studies we will bring you a real experience of one of our favourite mums in the online world who lives directly this experience. Miriam Ruiz de Larrinaga, better known as Mamá en red (mamaenred.com) is opening her heart and takes us though her personal journey.
For us, Miriam is an example of a courageous mum, although, as she herself tells us, women in this situation are not heroines, but more like “ women full of fear, trying to survive.” And having to live with cancer, regardless of its type (in her case is breast cancer), brings you to all those points of physical and mental state that no one who has not gone through something similar could know. It brings us closer to our most essential being, there where we can discover of which matter we are made. But above all, it brings you closer to fear, to the terror of the unknown, to the pain, and to the eternal question: and why this to me?
Here is our tribute, support and best wishes to all men, women and children who are unfortunately going through a situation similar to that of our beloved “heroine” Miriam, Mamá en Red.
But who is Miriam Ruiz de Larrinaga? An excellent communication professional (she worked for CNN + and Canal +, among other media) working as Communications Manager at the Spanish Association of Energy Services (ANESE). She was diagnosed with breast cancer in .
Hello Marian, thank you for accepting this interview with #TheNowFamily. Introduce yourself to our community.
I am 38 years old, originally from Elizondo, Valle de Baztán (Navarra) but I spent my days in Madrid since 2000. My husband and I had a 9 years relationship when we decided to get married in 2007. This February we celebrate 10 years together and as now I do not detain myself from celebrating anything, we will go traveling without our girls in a sort of honeymoon.
I have had two daughters and if I could I would have liked to have more girls, I love children in general and girls in particular. I’ve even thought of turning my life around for teaching. My daughters are 5 and 8 years old and for me they are the most important thing in my life. After the treatment, I will not be able to have children of my own.
Are you still working?
I currently have a temporary disability due to the chemo treatments I am following, which are two. Sequently I will start with a 5 years hormonal treatment. When I’ll be back at work it will be a surprise for me.
How did you find out you had cancer?
I noticed a lump during a self-examination that I made myself in the shower regularly. Every year I used to have a doctor’s review, but I also did self-explorations myself. I noticed something strange and in 3 or 4 days I got an appointment from the gynaecologist to look at it. I went to a private doctor and he said that there was nothing to worry about. Luckily at 4 weeks, after the summer holidays, I got time for the social security doctor and there they quickly saw that what I had was not good at all. They started with the biopsies and confirmed it. I had a multifocal hormonal cancer and halfway through treatment it was discovered that one of the tumours also had HER2 positive receptors, so I receive the medication also corresponding to that type of cancer. I have gone through 16 cycles of chemo, radical mastectomy including 9 lymph nodes and 25 sessions of radiotherapy.
Given your treatment and the fact that your daughters are still small, how is your day to day chemo or treatment sessions?
I’m going to the hospital every 3 weeks right now. I got the medication for HER2 positive and take chemo pills at home to prevent metastasis. Every two to three weeks I also have tests, I go to the physiotherapist because the arm is resentful after a mastectomy. Also, I go to yoga classes prepared by the AECC and every month I receive another injection to provoke the menopause. It is similar to having another job because you are all day back and forth with the fatigue and pains that are provoked by the medication. I am currently waiting for breast reconstruction.
In Oblumi we try to help families through technology. How do you think technology helps you?
The first thing I get help with is by keeping a daily agenda, because the medication produces a kind of chemical fog in the mind that causes us to forget important things completely, not think clearly, etc. I carry everything in my cell phone: dates, tests, questions for the doctor …
In addition, my physiotherapist uses a very advanced device to drain my arm and thanks to it everything is under control.
Seeing that you carry everything on your mobile phone, do you use health apps?
I use some applications mainly to monitor my exercise and encourage me to do things like go jogging, etc.
What do you think eHealth companies should focus on to help in the fight against cancer?
In informing us at every step about what we have to do: recommendations before chemo, what guidelines to keep during treatments, diet to follow, the best lifestyle to approach, exercises after mastectomy, things to avoid …
Have you been benefited by any specific technology?
Of course the device that uses my physiotherapist to update my arm for me is paramount. It costs a lot, but it is money well invested. My smartphone also saves my life in terms of telling me about my appointments, medicines to take, etc.
As a mother in this situation, what is the most difficult day to day?
The tiredness is the most difficult to carry. You want to be 100% as a Mom and many times you cannot. It is difficult to be with them as you would like to, patience ends with tiredness but sometimes you have to surrender and simply do your best, as well as accept others help. Fortunately, children understand and adapt easily to any circumstance. We are the ones who demand more.
Do you have any rituals? Special food?
I have changed my diet a lot. Now I do not eat meat, neither do I drink milk, I avoid sugar and processed products. I cook things a little and try to simmer. I eat a Mediterranean diet, not vegan, as small fish and eggs. Exercise has also become an important part of my treatment. I practice Nordic walking because it is ideal after the mastectomy in order to drain the area and get more and more movement and strength in the affected arm. In addition, as I have already mentioned, I practice yoga with the AECC.
We have experienced with relatives and friends in a situation similar to yours, that after the chemo sessions and treatments, the sequels are not a vacation precisely. Do you have a trick to spend the days after the treatment?
A lot of patience, do not be afraid and try to take it as a short period of a few bad days which will just go by as quick as they entered your life. Although there are people who do not experience a bad time, I spent like four days in bed in which I did not even want to talk to anyone. I just got up to eat, to clean myself and nothing else. I try to spent those days trying to be as calm as possible. All this thanks to the help of my parents and my husband who take care of everything. Sometimes it’s hard but what’s important is that passes. The relaxation exercises are fundamental.
What do you do to be in good mood?
Well, I do a little of everything. I have done a house super-cleaning (lol) and I have given a lot of things to the people and others I am selling them. A house in order helps to have a clear and happy mind. I write in my blog mamaenred.com, I do crafts, play with my daughters, we enjoy traveling and above all I try to help a lot of people who write me through the blog. Some of them who ask me for advice, are relieved …Many of them, after reading a post or watching a video of mine, message me with questions. I try to do my best and answer to everyone. Moral support is essential in these cases. Also, this makes me really happy. The first day I felt good, after knowing I had cancer, was the day I was able to help a friend by recommending her wigs in the hospital. Helping others makes you forget a little about your problems, you stop being the center of attention and this gives you an incredible satisfaction.
Can you give some advice to those moms and families who are in this situation?
Each person has his own time. It took me about 3 months, after which everything got much easier. Forget about guilt and above all accept all the help others offer you. As for children, you should be sincere with them, respond to those who ask us with the truth and be natural with all issues and physical changes. And above all enjoy a lot little things and forget the superfluous problems.
Before all the phrases that people usually say with the intention of encouraging, a cancer patient, Emily McDowell http://emilymcdowell.com/collections/empathy-cards created what she called “empathic postcards”. A series of postcards that summarise the typical phrases that people usually say by way of “encouragement” and / or opining about the illness that in the majority, of the occasions, none suffers. For this designer, already recovered, to the typical phrase of “Everything happens for a reason” she responds that if everything happens for a reason, why do not have to experience you that reason? In your case, do you have any typical sentences or phrases that you’re tired of listening of?
Yes, there are a few of them. “Breast cancer today is like experiencing a flu”, it’s absurd. It has nothing to do with having a flu. Or when you’re told that you should be happy to be a stay at home mummy, as if it was something good. We are not heroes, we are women fucking scared, trying to survive this illness.
Although we smile this is very hard. They tell you that “you will enjoy more life. Of the good things in life “. But what they don’t know is that I already enjoyed them, I did not need a cancer for that (which maybe for us is the best).
Así estaba hace un año. En pleno tratamiento fuerte de quimio con mi peluca. Sonriendo para mi peque, pero echa polvo física pero anímicamente sobre todo. Y ahora, un año después, estoy como una roca, con ganas de luchar, de disfrutar, de sonreír de verdad. Me duele todo cuando me despierto, estoy cansada, se me olvidan las cosas, los pensamientos me llega a la cabeza a los días, tengo el brazo izquierdo fastidiado, diarreas, náuseas, mareos, dolores de cabeza, poca sensibilidad en los dedos, ojos secos, dolor de caderas, cervicales cargadas… Pero soy feliz, qué raro verdad. Pues sí soy muy feliz y tengo ganas de luchar y disfrutar hasta que me dejen. SÍ se puede. ¡Sed felices! Un abrazo gigante
Facing an interview is always a challenge between wanting to ask and wanting to listen. In this case, being an online interview, the nerves in answering the questions could be felt also in the form of email. We have long lost the wonders of ink smell and messenger pigeons. But fortunately, when faced with a communication professional, she knows what needs to be done: communicating. Far from transmitting the concrete message, made of chained words and phrases, the form of writing to answer a “simple question”, says much more than the person wants to let the reader know. By its form of answer and its social images, Miriam Ruiz denotes the self-restraint of people who do not want to be give up, of those people who were already happy with their lives “before …” and they did not need any obstacle that would teach them to value the things they had. She already knew. She fights because the option of falling is not possible. But if one day she does feel low she does not hesitate to ask for help and showing herself as she is.
Many thanks to Miriam for the bottom of our hear for this sincere and positive interview given for our Oblumi readers. We will keep an eye on her blog mamaenred.com to see what other positive experience she will bring to the world.