My dear Syl, love of my life.

Today was supposed to be a day of joy and laughter. A big day, celebrating your fiftieth birthday. “What’s in a number?”, one might say. Even you could have said that. But in this case you didn’t. You wanted to celebrate. Big time. With as many people you loved present. Sharing your happiness. Giving them a party as a present. Just because you love them. Because they were there for you. You wanted to give something back in return for their love.

But life decided otherwise. Life decided, it was time for you to receive. Big time. But as always, there should be a balance, so if you want to receive big time, you need to give big time. And boy, you did give big time: your own life for crying out loud! And boy, you did receive big time as well! I have never seen that much love channelled at one person as I did last year. The air was quivering with love, so to speak. And you let it all in. And I was there to see you enjoy it. Being astounded. Emotional. But most of all cherishing it. All that love.

You received so many messages from people, telling you how they feel about you. And what it was you had done, that made a difference in their life. People didn’t wait for you to die, before they told these stories. No, they seized the moment and told you. On paper or email and sometimes even face to face. You really cherished that. And so did (and do) I. Because there was nothing that could have made me happier last year, then they way you treated Syl. Words cannot describe how happy and thankful I am.

So where I was planning to throw you a big party tonight, life threw you a so much bigger party that lasted almost a year! And if it wasn’t for that still unbelievable and sometimes unacceptable ending of you leaving us here behind, I would be nothing but grateful. But I still have mixed feelings about this all. Call me selfish, but I miss you so much, that it hurts in the most unexpected moments. When I come home and I want to tell you about the great support I get from my colleagues. Or tell you about the house in Scheveningen which we loved so much, that it’s being used in a TV series. Or show you the lovely card I received from one of your friends to cheer me up, even though she doesn’t know me. Or tell you about the regular text messages I receive from a mutual friend, just telling me he’s thinking about me. It’s these things that make me feel you’re gone too soon. There is still so much I would like to share with you. Experience with you. Or just something simple as a kiss or a hug. I miss that. God how I miss that. And I know that there are so numerous big and positive memories, that some day they will take over they pain, but that day hasn’t come yet. I do see those kind of moments, though. Every now and then I have these moments. And they are increasing in numbers. Slowly, but surely. But hey, you know me: by far not quickly enough J But I have to take it one step at a time. And today is such a step. Remembering you. The good stuff. The beautiful moments. The love. Okay, the form may be different that I would like it to be, but that doesn’t have to withhold us from doing it anyway.

So tonight we go out for dinner as we did every year. With the same people. At the same place, the same table even maybe. And I will start with a starter Syl Style: Carpaccio, with a small brown bun with butter and some cucumber. And I will toast on the beautiful memories you helped me (us) create. And on that day that gratitude takes over the feeling that you are gone too soon.

http://www.youtube.com/watch?v=MBFr43vQiSM

A lot has happened since my last update (Nov. 28th): On Nov. 29th, Riette stopped by, which was a great reunification (Syl and Riëtte always had that kind of relationship). She brought us a great lunch, but I forgot to take pictures; luckaly she will be back this wednesday, so I can try again 😀 Looking forward seeing you again, Riëtte!

Later that day Rene stopped by with a great soft pillow for Syl’s arm, a great picture of the two of them back in 2001, and a CD with some demo’s. And to top it, we got a mini living room concert, using Syl’s own guitar. Again forgot to take some pictures (where am I with my head?), but I recorded the concert, so we can always listen it back again. Thank you René and I’m sorry for the strings of the guitar 😉

Saturday Karin, Esther and Jennifer stopped by, also with a great lunch (yes, we are indeed spoiled) and two great soft pillows. Also Esther made a great big glass suitable for burning a candle. Thanks a lot ladies! Love your support!

In the evening, Ron (Syl’s brother) and his wife Jeanette dropped by. Always great to see them!

Sunday Dec. 1st, Nico came by; was way too long ago, but that was our own fault (because we limited the number of visits strictly this summer). Great to see you again and sorry Manuela couldn’t come at the last minute. Looking forward to our resprise coming monday!

Because of the busy week, we limited the number of visits again the next week, so except for the regular parents visits, only Denise and Willy visited us on tuesday. Great to see you again! Although never far away.

On December 7th, Rene Shuman En Angel Eye had a jubilee concert in Kerkrade. They gave us tickes for that some time ago and I arranged hotel etc. to go there with Syl’s parents, Ingrid and Jeannette. You’ll understand this wasn’t possible anymore, so I arranged all people involved to stop over at our house and we would watch a Shuman and Angel Eye DVD together. As a big surprise, were also given a special present: we could watch the second part of the show in Kerkrade live via internet! This was amazing! Thanks a lot guys for arranging this!!! It felt as if we were there after all!

Sunday Dec. 8th Paul & Sandra came over and brought us lunch (do you see the thread…?) That meeting is always great <3

Tuesday 10th, Ron, Ferdi and Iris dropped by; a little family get-together.

Saturday 14th, there was a XMAS concert from Rene and Angel Eye in Vlaardingen for which we had tickets. I managed to arrange an organisation called ‘Ambulance Wish’ to bring Syl and me to the concert and back again, using volenteers and an ambulance. Unfortunately I had to call it off, because I expected it to be too energy consuming for Syl and I wasn’t sure if she could still enjoy the concert after such a tough trip. We watched a XMAS DVD of S&A instead and at the moment we were listening to ‘Silent Night’ on the DVD (one of Syl’s most favorite S&A songs), we got a call telling us R&A were dedicating a song for her at that very moment in Vlaardingen and we could listen to it on the phone! And guess what song? Indeed: Silent Night! Serendipity in it’s greatest form! And Syl was clear enough to understand what was happening! Thanks again guys for such a beautiful gift!

Last sunday Ineke came over again. It’s just great to see you, talk to you and hug you <3

Today Jeanette and Elvin stopped by, another small family reunion. Always great to see you!

The past weeks we also received several flowers. Thank you very much Wencke, Carla and Leo, Anne and George and Marianne and Jeroen!

Please forgive me if I forgot someone; I got a memory like a sieve nowadays. Please be convinced your presents, but also your cards and messages are hugely appreciated!

At the moment, Syl is pain free, but her conciousness is deteriorating. Normal conversations are not possible; if I’m lucky I get answers that make sense when I ask a simple question; sometimes verbally with one or two words, but in most cases by nodding or shaking her had. She sleeps more and more and where she used to wake up herself in the morning, nowadays I have to wake her up (she needs to take her medicine), which is sometimes hard to accomplish. Honesty compels me to say that for a large part I have lost contact with my soulmate already. It’s mainly keeping her as comfortable as possible and continue telling her how much I love her and that I am with her to the end. I see from her reaction that she understands what I’m saying, but response is merely impossible for her. I comfort myself with the thoughts that she has been sharing her feelings for me continuesly for the past 14 years. And although very hard sometimes, it is great to be able to take care for her, helped by so many beautiful people from the Home Care Team and feeling lifted by your support.

So a big THANK YOU for you all, who help me do what I love to do most: take care of my (and your) dear Syl! <3 <3 <3

Things are reasonably steady. In the morning Syl is washed by someone from home care (I assist her) and in the afternoon and evening someone from home care comes by to do things that need to be done (cleaning e.g.). The washing part is painful, so I give Syl a little bit of morphine one hour prior to the washing and that helps. She also has an adhesive plaster with morphine that gives her a continuous dosage of morphine.

Almost every day we receive cards, this week even another beautiful bouquet of flowers (thank you very much, José!) and regularly family and friends drop by.

Syl is pretty tired, so a large part of the world around her passes her by without really knowing (she sleeps a lot), but when she is awake, she is reasonably aware of her surroundings and most of the time also who is in front of her. Although sometimes she mixes up people. Having a ‘normal’ conversation with Syl, as we were used to have, is too complex for her. She understands reasonably well what is said, but when it comes to participating in the conversation, or answering questions…that’s usually sheer impossible. Questions that need her answer, need to be as simple as possible and one at the time. Eating is still something she does well (although I need to help her with that), but chewing and swallowing is still fully functioning and her taste is very well in tact (thank God for that!). So she’s enjoying food very much so.

Having said all that, I can’t but face the fact she is slowly slipping through my fingers and that hurts. A lot. I think the best way to describe how I feel, is as if I am waiting for surgery to get a body part amputated. One would want the waiting to be over, but then again, who would want a body part amputated? It feels like choosing between two bad situations. And I don’t even HAVE a choice. It’s just freaking hard; that’s what it is.

So what I do, is try to focus on the good things: Syl’s still here, able to enjoy some things on a daily basis. She’s not in real pain. I am still able to take care of her, now helped by many kind and capable people. We both sleep well and I am on a daily basis in awe how brave Syl is coping with the whole darn situation. And that helps. A bit. But the bottom line is: I want my wife back! But I can’t. And there is nothing I can do about it 🙁

Time for some good news!

Moving down to the living room with an adjustible bed and three times a day help from home care is having positive results on Syl’s wellbeing (and mine as well).  The last few days she is feeling much better because she has much more rest now (she does not have to get out of bed anymore) resulting in feeling very at ease and a much clearer mind! It’s great to be able to tell you some good news after last week!

The people from home care are not just very capable, but also very sweet to her (and me), so we are very thankful for that!

The last few days Syl received again some beautiful gifts, for which she (and I) wants to thank you for: Thanks to Anne for the beautiful meditation card and mini Pooh, thank you to my colleagues for the beautiful flowers, thanks to Ruth and Marian for the lovely book with quotes about LOVE, thanks to Ellen and Steve for the delicious Davidoff Cool Water and thanks to Denise and Willy for the delicious chocolates and beautiful flowers! And of course thanks to all for the lovely messages and love you are sending us! It’s overwhelming! Thank you, thank you, thank you!

Wednesday November 6th we had an appointment with a homeopath to see what she could do. We had a very good discussion and she promised to do her best to make a difference (she hoped she could help Syl’s body to stop or slow down the tumour growth), but she also could not promise more than that. Really great person!

Sunday the 10th, we had an appointment to see Peter and Willy, but I could not manage to get Syl into my car, so we called them and they came to us instead of the original plan that we would come to them. It was really great to see them again!

Tuesday the 12th we had a visit from Ineke. It was also great to see her again! Even Fadyen recognized her, although he was still a puppy the last time he had seen her.

Thursday the 14th, we had invited Corrine for lunch at Van der Valk, so my line manager could finally meet my courageous wife and Syl could see the person who made it possible for me to take care of her while doing my work. That morning I could not get Syl dressed because of severe pains in her right leg, so I asked Corrine to visit us at home instead. She did, and it was great meeting her and her gorgeous newborn daughter Chloé. She even brought a home baked lemon cheese cake, which tastes delicious, I might add…

That afternoon the pain in Syl’s leg returned so strongly I decided to call for our doctor to visit us, which he did. The pain was terrible and his conclusion was that the cancer has most likely spread to her lower spine (Syl already had pain in her lower back for a longer time, but that was not unusual. But these new types of pain are very typical for this type of cancer). So she now has painkillers in the form of liquid morphine (low dosage).

At the same time the doctor arrived, we had an intake meeting with someone from the home care, who could immediately start helping. We discussed all kind of options and decided for a special special bed to be set up in the living room, and that’s where Syl is sleeping since last Friday and I am sleeping there as well.

Our holiday trip could not happen of course, so we decided that we can still be together as a family at our house, so last Sunday Syl’s parents, brother and sister in law came over for a nice get together and Syl’s parents will be stopping by every day the coming week, to help me get some extra sleep, to spend time with Syl, to cook for us and maybe even play some games. It’s great that everybody is so flexible to adapt to changed circumstances!

We have someone from home care coming over three times a day, helping with washing and cleaning Syl (because she can’t get out of bed anymore). Syl sleeps a lot, and when she is awake, she is sometimes confused, but regularly having a clear mind. She is not having much pain, and if she does, she had pain killers that help very well. She is still enjoying the company and her appetite is still very good and she enjoys what she is eating.

I read all her messages to her she receives on Facebook, WhatsApp, email and cards and if she want, I respond for her. But this is done very irregularly, so don’t despair if you don’t see a ‘Like’ or response. It will follow later, or maybe even not so, because of lack of energy. But we DO appreciate all your support!

Time for a little update, which I will be writing, since Syl is feeling too tired to do it herself. And she loves to save her energy so she can keep doing things that make her happy.

Like yesterday: we went to an Open Home day at my work in Vlaardingen.

Syl had not yet seen where I’m working, so she was naturally interested. Also there were to be many demonstrations, so I invited her parents along too.

What a great day it was, with lots of interesting stuff to see, great food, bumping in to some of my collegues and finally a Shanti Choir that appearantly made both Syl and her father sing along out loud. We had a great day!

Had a great dinner with even greater friends!