Mycosis Fungoides since 1978 – 13th July 2016

DSC_4180aHaving a cancer diagnose has an influence on many things….. for the rest of one’s life…

I do also have arthrits (leddegigt) and right now the meds do not work. My doc talked about biological meds (biologisk medicin), but when I read about it, I realised that is not an option BECAUSE I have the cancer diagnose.

I spoke to a nurse about it, and told her my diagnose is Mycosis Fungoides, if she knew it? NO she had never heard about it. Good – I bring some information. – I read on the internet (minmedicin.dk) that apx. 10 new cases appear in Denmark a year, and it usually hits men around the age of 60 – I was 21 – and definately not a man…. – I continued reading, and then I learned that the type of bio meds, they would give me, when I have a cancer diagnose, I cannot get either, as I have a weak immune system…..

Now I wait for for reumatologist to return from his holidays 2nd August, so a plan can be made for me – as of now, my arthritis is action up, and all I can is sit on the couch or lay in my bed.

Lucky for me I have the bestest of husbands 😉 and he supports me in my decission to wait for my own doc to return. I have the bestest of friends – and some of them were just her for a visit the the most beautiful buquet of flowers (the kind I tolerate).

I make the best of the situation, and relax and enjoy my time – what else can I do? Crying doesn’t help – have tried…

So take care of yourself – and enjoy your lifes – and remember to tell the people you love that you love them.

August 16., 1994 – the day I realized I had an uncureable cancer! / May 3., 2016

DSC_6580MF blurIt is not easy to live with a hitten disease. It is not easy to explain that to others. – But who promised us, life would be easy?

I look at it this way:

I feel lucky (yes!) that I met problems that early in life, because it has helped me to realize WHEN something is a problem. If it is something I shall put an effort in, or just let is pass.

We all have “a backpack”. The backpack contains all our experiences. It is VERY important to select, WHICH experiences to keep, and which ones to look at, maybe keep a learning – and the throw away. The content of our backpacks is what we can use to help others – and most important – ourselves! We can tell what we learned from this or that situation – then people can think themselves, if they can use that experience. We can look down the backpack ourselves and see, if there is something down there that can help us through the present situation. Usually there is.

Actually just like this site. Read, think, learn/save or let it be.

It is also important to remember that we are not all alike. Look up at the photo of the flowers. OH it is beautiful – but look closer, and not all the flowers look the same or develop the same way. Neither do people.

When I realized that I had Mycosis Fungoides, and it is a rare type of cancer, I wanted to know more – and I wanted some answers on different questions.

My doctor had left his job due to age, and unfortunately my HUGE file had disappeared along with him. WHY? – Well, he was the first person I asked a few questions – He obviously knew that some of the things he had put me through, hadn’t been done according to guidelines – so to clean up after himself, the biggest part of my journal (containing all the photos, blood tests etc.) vanished into thin air. The minor – and not that important part – stayed behind….

OK, so I asked the two other doctors, who were supposed to know about MF. One was a male doctor in Jutland. I don’t think he even read my entire letter – as his reply was – YOU ARE A FEMALE – YOU CANNOT HAVE MF! – Well, I do! The illness didn’t knock and asked, before it entered my body – it just was there.

If there is anything important I have learned from this – it is to ALL THE TIME ask for copies of my files. That way I!!! myself have all the files. I have been horrified by all the incorrectly pieces of information doctors and everybody else write in files. Here in Denmark you cannot get anything changed that has been written in a file! You can write a clarefication – but that’s it.

It is hard work to be ill, and every ill person should have a secretary to handle things. But that’s not how things are done. You have to take care of yourself.

This was my 2 cents of today 😀