Grinding to a halt

Slowly my life is grinding to a hold. Every day I need more care and moving is getting more and more difficult. Els is having a day job taking care of me.
My leg is getting even thicker and yesterday a specialized physiotherapist has brought a special tool to reduce the thickness. On Wednesday radiotherapy has been planned for a different spot in my belly. The radiotherapist yet found a possibility that had a good perspective to reduce the fluid in my leg.
On Monday my son Thomas arrives at Schiphol airport. At this right moment he finds himself in Singapore. That will be his third visit this year. It’s obvious. The end is near.

Living on borrowed time

End of April I wrote about my thick leg. My leg had become dangerously thick because the lymph fluids were blocked by a blast. A radiation did the trick and until this past weekend my leg had its normal proportions.  On of my biggest fears was this to happen again.

Alas I must report that this weekend the thickness came back. I called the hospital on Monday and had an intake on the very next day. Tomorrow, Friday, I will have my radiotherapy. This is really unbelievable the speed in which this is delivered. I even had a consultation with my hematologist, on her her first day at work after her holiday. Heartwarming.

The CT-scan showed a blast on the inside of right thigh. Fortunately a spot that has not been radiated before and doesn’t  contain any critical organs.

We are very aware of the fact that I live on borrowed time. No more medication. But this radiotherapy will hopefully prevent a crisis-situation. Within my reality this is good news.

Radiotherapy

Radiotherapy

Doris

Today we had to let Doris go. Over 17 years of age she began to retain fluid. The vet diagnosed a serious heart-condition. Of course we knew we had this coming. This afternoon she will be buried alongside Oes and Daisy.

She was a terriffic cat, always kind to everyone.  She had a fantastic catslife.

She will be missed. It will be strange having no more pets in the house.

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1973

In 1973 I left my parents house to live on my own. I was in the last year to become a teacher. This was a very important year for me in which a lot of important things happened to me. I was asked to play in a band which resulted in a long cooperation with my music friend Bonne. Fortunately I still had some time left to do my exam successfully. More important was the meeting I had with a gorgeous woman, who seemed to fancy me as well. She was prepared to warm my cold hands and this thunder-strike has lasted ever since, almost 40 years. On the picture below with the guitar, from the the same year 1973.

Betere tijden

Why this picture, you might think. Well, I had the plan to have a picture of all of my guitars. Roos, Niels’ girlfriend, is a photographer and she has a little studio. On my request she shot a series on location in out garden on august 24th. Beautifully done, wonderful pictures! Finally it seemed like a nice idea to make a few pictures of Els and me too. See the one above.

What I didn’t know, that on the very next day, I started loosing my hair because of the chemo. Right now my hair is shaved off. Nothing can be done. I’ll have to wait till it grows back on.

Below you see Roos in action. Interested in what she makes? Check out  dRaw.nl

New course

Yesterday I was back at the hospital. Monday, after a bad night with a fever, I had already been in the ward. This visit, however, was in relation to an earlier appointment to discuss the CT scan I had the 31st of July. There had been a discussion with the radiotherapist and the hematology team. The outcome was not good. The courses of Velcade with Revimid have not had any effects on the ‘blasts’, so we’re stopping those. The big risk factor now is the blasts that are developing in my liver. Apart from those there are spots along the aorta and my right kidney. Radiation therapy isn’t possible on the liver without doing severe damage. However, the hematology team suggested that chemotherapy with Doxorubicine (Adriamycine) could be effective in reducing the blasts. I decided in the same visit to start the chemo. I was able to move to the day treatment area a little later, where I received the highest dose. After a miserable evening I managed to get a reasonable night’s sleep and am currently feeling rather alright, considering. If this works, it will work for all spots, so it’s time to cross my fingers. In the best case there would be some respite or a slowing of the advance. We’re hoping for some extra time.
(Too tired to translate. Thanks, Thomas)

A very difficult week

Yesterday I said my last goodbye to Bas Sibbing. It was a beautiful, but very sad occasion. I was happy to have Els and Niels to support me, sometimes literary. We had a lot of contact, also through our work for the website of cmwp.nl. I wrote an IM for the patients contact group.

The picture on the IM was made on one of out boat rides.  I’m going to miss him very much, but I must go on. Off today I will try to pick up my own life again.

A picture from better days.

Better days

 

Finally a new blog

It was high time for a new blogpost. So many things have happened, I had hardly any energy and time to write.

It was a beautiful, melancholic day, Monday last week. We had to say goodbye to a very sweet aunt. She died on Monday July 1st, 91 years of age. The oldest sister of my mother. She played an important role in our family. The boys didn’t have a grandmother from my side and she played an important role to make up for that loss. She was crystal clear up to the end and she was totally in control till her final hour. It was good like this. When she deteriorated because of her illness, she called it quits. Up to a few weeks ago she did her daily shopping at the local supermarket. She didn’t mind the four flights of stairs in her Amsterdam apartment. The house had a beautiful view on the river Amstel and she had lived there since 1943, almost 70 years. We spoke at least once a week and we saw each-other as often as possible. Up to two years ago she still drove her car. I’m going to miss her enormously.

My aunt

My aunt

On Tuesday Thomas and Seona headed back to Australia. For more than two months I have been able to enjoy their presence. It was good to be close for such a long period of time. The bond was already strong, but this was really special. On Tuesday evening Erik and Inge moved to their new home, so we were left in our empty nest. They live only 15 minutes from here, which is very nice.

A very nice empty nest, by the way. I must be honest to say that I really enjoy being together with Els again and to be able to do things completely our way. This is the first week of Els’ holiday and the weather is perfect. We really enjoy holiday in our own home and garden.

Last Wednesday I started the chemo’s again. Velcade and Revlimid are tough. I’m often totally exhausted and sometimes I can only lie and do nothing. In the afternoon I take long naps. I watch the Tour de France and often I wake up when he runners have already finished.

The nights are difficult.  Somehow I have to go the toilet every hour of hour and a half. Contiguous nights are something I can only dream of.  But one gets used to anything.

I’m not sure how things go. We live in great insecurity. Wednesday chemo #2 and one more week of Revlimid. On July 31st There will be made a CT-scan of my abdomen. maybe we’ll know more about these wretched blasts. It doesn’t feel right, but we take one day at the time and try to makes as much of it as possible. It don’t come easy….

Stable?

I find myself in the end of the second cure series. Just a couple of days taking Revlimid (15 mg) and I can take a break for two weeks. Without any evidence I have the feeling that I’ve gotten into a more stable period. On July 8th the third series start. It’s confusing to adjust to shifting situations, but in this case it’s not so hard. I have a positive feeling. My energy level is getting better, I can do more and I enjoy al kinds of things. Mowing the lawn? I’ve done it twice now, tomorrow again. Now you must consider I have a mower I sit on, but I have a large garden, so it takes about an hour to finish. A boat ride? I’ve taken the boat out three times already. Things I dared not dream of in April. Driving my car? I’ve been driving to Amsterdam a couple of times already. So…as long as there is a wheel to hold, I’m glad. Gadgets? I’m the proud owner of a Raspberry Pi, the cheapest complete computer available. This takes care of streaming all my films and series, so I can see them in my bed wirelessly. It works fantastically and I like to fool around with these kinds of toys. On the back of my screen I stuck a media player the size of a deck of cards. I totally like it, so play with!

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Chemo

Two weeks of chemo are done. The Revlimid 25 mg gives me hard times and in week 20 from may 14th I had two shots of Velcade. In week 21 we decided to pause the Velcade gifts because my Polyneurapathy  was rapidly increasing. That has been more or less successful. The pain in my lower legs has diminished. Today I had my checkup in Amsterdam and there was a possibility to start the new series of chemo. Yet we have decided to start next week. I think we have a better view on the Polyneurapathy. Besides, it’s lovely to enjoy some extra days without side effects. The weather will finally be better. Yesterday we took the boat out with my Australian kids. For my daughter in law it’s the first time she was here in summer, so she was all eyes!