Life of a Chemo Patient

The result of my last PET scan and blood work caused my oncologist to “accuse” me of upsetting the statistics. And he finally said with so many words that the odds were very bad when I entered his office in August 2006. With all I have read, that would have been about 5%.

But he had no solution for all the rest. And that what I call “the rest” is large. When I write this, I’m just out of bed. Like every morning, everything hurts, especially my legs feel as if they could go into a cramp every minute. And that won’t go away for the rest of the day, it has become one of those basic things in life. Continue reading ‘Against All Odds’

Posted in actuality

Today, 28 March 2010, it’s 4 years ago that I went into surgery for a hemorrhoid and came out with a diagnose for NHL.

But I’m still alive and kicking. The kicking however is mostly caused by sudden attacks of RLS. And the fact that I’m alive is something my body makes me notice at every single minute of the day from the moment I get up in the morning till I fall asleep at night. Apart from the (inside of) my chest everything else hurts, almost continuously. Hence the difficulties to walk and move. Continue reading ’4 Years’

Posted in actuality
Tags: chemo brain, NHL, RLS

The day after tomorrow it will be 3 months ago that my left leg exploded. I wrote about it in my 3 previous posts. 2.5 weeks later, after having left the hospital, I was told that setting year’s end as a goal for the wounds to heal would be very unrealistic, I’d better add a couple of months to it, so March/April.

Continue reading ‘I Got Closure’

Posted in actuality

Let’s start with the good news, for a change. According to the nurse who supervises my wound care, my leg is behaving exceptionally well. In her words: “In the 23 years I’m doing this work I have never seen anything like this. The speed at which the wounds are healing is unheard of.” Especially remarkable is how clean these wounds are.
Continue reading ‘Healing Hurts’

Posted in actuality

I think nobody, including myself, realised what could happen when my existing condition would start to mingle with the new one.

Let me bring you up to the latest first. Today is my first antibiotics free day (apart from the prophylaxis which will take another 18 days). It’s about time, as my stomach did have serious problems coping. Hopefully it will also help to lessen the fatigue.

Continue reading ‘Piping 2 Tunes on 1 Leg.’

Posted in actuality

Let’s sing a different tune this time, I have been trained for it, haven’t I?

Since my last post here, things have been slowly improving. I was able to attend a conference in Munich for a week (thanks to a dear friend who drove me), went to see my parents (2 hours single train trip) for the first time in 1,5 years, went to visit friends outside town. My head was improving, I could concentrate better, I finally was on the way up. Until…

Continue reading ‘Why not sing a different tune?’

Posted in actuality
Tags: cellulitis

Its three years today. Three years ago that I got my first round of chemo.

It was my intention to use this blog to write about what happened in the months between the diagnosis and the actual start of the treatment. The stories about accumulating medical errors, an oncologist who changed the tumor classification or who forgot half of the tests he had to do. A second opinion on the tissue that came back showing it was performed accepting assumptions made in the original test (“coloring positive for CD120, according to hospital, sample not included” – I know that phrase by heart). The re-growth of the tumor with the open surgery wound on top of it. The last month spent in bed because the bulge hanging from my bottom (remember, it was originally diagnosed as a haemorrhoid) was so big that walking had become quite difficult and the pain caused by the growth and subsequent pressure on the open wound was becoming difficult to handle (I lived on 3200mg ibuprofen per day). All that I had wanted to describe in detail.

Continue reading ‘Anniversary’

Posted in actuality, history

As I announced in my previous post, I went to see the pain physician on Friday June 5. My oncologist had recommended a specific doctor, but I got another, as the pain department policy does not allow appointments with a specific physician. I consider this an outrage, as pain is one of the most subjective and intimate issues in care.

When I entered the room I was told that my file had already been read. Maybe it’s due to previous experiences, but I would have preferred to hear “good morning, please have a seat, I went through your (paper) record, do tell me how you can think I can help you”. Unfortunately, that was not how I perceived it.

Continue reading ‘The Lyrical Experiment’

Posted in actuality

It’s a while ago since I last wrote, despite my idea to have a regular look back at what happened 3 years ago. But actuality can sometimes change things and ideas.

As might have become clear from my previous entries, one of my major complaints has been the fact that I lost my ability to focus and concentrate. So my oncologist proposed to start taking Ritalin, which also works as a brain enhancer. March 3 was the date I started taking it. It was a revelation!

Continue reading ‘A strugle called Ritalin’

Posted in actuality

Today it is exactly three years ago that I went into surgery to come out of it with the diagnosis of cancer. A day that has seriously altered my life.

I said I would write more about the history of the process. Well, in the weeks leading up to the 28th little happened. The assumed hemorrhoid grew and grew. 3 Surgeons had a look at it a week before and all of them confirmed that diagnosis.

Continue reading ‘Three years’

Posted in history