This will be not the article you might be expecting as I had to take a break because of health issues and it caused one of the highest stress levels possible.
I was treated with Ischialgia but the symptoms were not getting better. Therefore I decided for an MRI to have look into my back. The assistance mentioned that the doctor might call you and he did it at the same day. And, at the same day I was scanned again with contrast medium and the doctor told me that I have secondary cancer and the primary cancer is unknown... Presumably lung or breast cancer. That was a shock for someone who lived a relatively healthy life style.
In the car I mentioned the result to my husband and during the next days I prepared for the worst. I did not have any pain except in the back and moving, walking became more painful and harder from day to day. At the moment I am partly paralysed.
After I had the appointment with the outpatient oncological clinic I was immediately admitted to hospital. And the race with the time started. The weekend before I was admitted to hospital I organised my funeral, because I did not know which organs were already effected (metastasising carcinoma) and it could have been that I had a few weeks left as the worsening was so dramatic and timely radical.
A body MRI with contrast medium was done and afterwards I sent to the radiologist of the hospital. Radiologist? Radiation. At that point I did not have any knowledge of the result of the body MRI.
A colleague and psychologist of the house organised a special visitation right for the announcement of the results, because of COVID nobody was allowed to see me and I told the radiologist that I am waiting for my husband so we can face the results together. I wanted him to be a part of the hardest moment of my life. But during the consultation with the radiologist I had to ask her whether I have more time than a few weeks and she confirmed. After the meeting she must have called the responsible doctor to tell me the result and it was completely negative. There was not cancer at all. Of course I cancelled the special visitation right immediately. More diagnoses followed and until now all were negative. Tomorrow, as I am still in hospital, it might look different, because a PET scan with contrast medium will be done.
I have cancer, but the tumor in the back is the primary cancer and is called a Hodgkin Lymphoma. We have not found any metastases yet, but as I mentioned, that might change, because the odd lymph knot might be effected. But the scary part of it is gone and the systemic therapy began on Friday.
Why am I telling you this?
It has been one of my scariest and most frightened situation of my life and of course caused an amount of stress one can hardly imagine.
What are you able to learn?
1. Gather people around you that support you
My husband was like a beheaded chicken. He ran around and was not able to organise anything. I invited my best friend to come over to help me and she opened my eyes concerning my husband. That meant to search for new sources. I called my brother and he drove about four hundred kilometres with his fiancé to be with me. He and his fiancé had the open mind this situation needed. Luckily, my brother even had got a project close to where I live. That meant he was able to combine his project and looking after me.
2. Look for people you can rely on
As everything was drastically fast in my case, concerning worsening and speed. We had one weekend to prepare everything. Never ever we discussed or faced a situation like this, but my brother took over the finances, the financial office and the tax office immediately. He is sending me copies of everything and he put my husband to work which he fulfilled greatly. He was just in too much stress to think straight.
3. Get a team that can organise
After my brother came things got organised and after I was admitted to hospital and it is clear that I will leave the hospital with a wheelchair, he organised that the house is ready when I am moving in.
4. Look for moral support
As mentioned above, the hospital is still closed for visitors. Luckily, this is going to change tomorrow and I am looking forward to meeting my husband in my room. :)
But I tell you it was torture to begin!!! Because of this situation I immediately opened a Telegram group for exchange and my family was informed that we would conference on Zoom, Facetime, etc. if necessary. Because of the positive results we never used the option and I sent all the news through the Telegram group.
Definitely I was not able to process everything during this short time span. Partly there were three diagnoses and treatments a day. That was an emotional rollercoaster and as they told me that it is a Lymphom I did not get that this is my primary cancer and that there is no secondary and I did not know that it meant that we are not talking of carcinoma anymore. For the treatment that makes a huge difference. The radiologist in her finial meeting told me that it is not very common to have a Lymphom in the back. It happens but it is rare. That was the reason why nobody expected it until the Biopsy surprised all.
6. Look back and reflect
When time has come, in my case it is now, reflect what happened and start planning your new future. Even in the time of not knowing how long I had to live I asked myself what do I want to do with the time left, eg. six weeks to two months. Of course I have never planned that short, but I started to think about it. And I went through my life. I was still meeting people online and earning money. I had a duty to fulfil and it structure my day.
And I even fulfilled one more dream I had. One dream I always had, was to review a Master's thesis. Just after the diagnosis and the admission to hospital I took part of the colloquium. I was lying one the side in my bed and asked questions online. And I knew I can go if I have to.
I was ready to go even though I did not finish everything I reached for. What I knew was that I had achieved as much as was possible in my given time: (ultra-)marathons, my business (online), travelling, etc.. I even asked a colleague to take over one part of my business. It was the part we worked on together. Now, as you read this blog you know, I am striving to grow again that I am able to pass on my projects in a more complete way then I would have been able now.
7. Plan your future
As already mentioned in the paragraph above it is important to plan your future. No matter how much time you have left, envision the time you have and think what you want it to look like. It will help you to enjoy the time given. Giving up should not be an option. Really make the best of your time.
It can include tough decisions. I started to cancel subscriptions, contracts, etc. And when the circumstances change to the positive, like in my case, it still includes adjusting to the new situation, overthinking goals, visions and roadmaps of projects. I will be more bold in my future decisions, because the time given might be shorter than originally envisioned.
Planning adjusted future visions and goals helps you to organise your day and that is an important part when it come to being happy. Many unemployed are depressiv because they lost their daily structure. Therefore I definitely recommend to organise your day to prevent from falling into depression. But, I will warn you it can happen that you become frustrated and afterwards depressive, if you do not adjust your workload to your current situation. Do not burden yourself with too many tasks and make sure you include breaks to regain strength. In my case I have to face many new situations that cost a lot of concentration, organising and envisioning how to fulfil the new task.
Your situation has drastically changed. Delegate work not only in the crisis now but later too. I am not sure whether everything will be back to normal for me and therefore I have decided to delegate work if necessary. I started this process before I became ill and I will focus on it even stricter in the future.
The more you delegate the more you can concentrate in realising your projects and to push them forward.
If you are not in a position to delegate your work I hope you are living in a country with a nursing care insurance that covers your costs for nursing. I will have to pass on some work to them for the near future, because I am not able to do everything by myself. For example, I am not sure whether I will be able to cook in the kitchen. If the food will be delivered, I can use the time for other tasks like a project, a meeting, etc.
Until now I have been writing how to process and how to plan your daily life and future. There is another important aspect to look at. Your social life. It is important that you interact with people. Make time for it. When I am at home I will make a plan for people to visit me and look for ways to meet them. My challenge will be of course my wheelchair. In my case people might fly in from as far as Asia to do business here and to see me. I know a friend from Hamburg will come to see me too. She wanted to come after my diagnosis and I asked her not to come, but now I am looking forward to seeing her.
And talk about your situation, your feelings and how you feel. Do not do it in a mourning way, but expect questions from your surrounding. In my case a lot of people my husband talked to were totally shocked of what happened. Many saw me walking normally and will have to face me in a wheelchair or a wheeled walking frame at the moment.
Be prepared that your surrounding has to process the new situation too. When I started to spread the news and it was partly before I was admitted to hospital, friends started immediately to cry on the phone. It was their way to process the devastating news. And it was hard for me to bear up. What I saw was deep grieve of the possibility of loosing me. Truly, it was pure love sent to me. Be prepared for any reaction.
I know I will interrupt contact to people who want to see me down, I will interrupt contact with people who want to pity me. These will be the people I will not stand, bear or accept in my current situation. I need an environment of positivity, support (moral and physical) and I am asking for it.
10. You are allowed to change
You are allowed to set boundaries where you think they are necessary. And I want to encourage you to set the boundaries where you need them in your situation. I know that there will be arguments with my husband and be sure I will fight them, because I will need it for my healing especially when I will have to face longterm restrictions of movement.
And I have to protect him of himself. He has already mentioned that he wants to be there for me all the time. But I know it will overwhelm him, it will deplete him and eventually it will burn him out if I do not set the boundaries. He is already caring for his mother.
I hope I have given you some ideas to face an unexpected live threatening situation and I hope sincerely that you will never come into this situation.
When you are in, of course you are allowed to be down at times. I am down at times but in my opinion it is really important to get back on the positive side of things and that is what I wanted you to focus on in this article.