monkeybutt
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Though I usually try to mark her birthday rather than this day, I’ll make an exception for this, the fifth anniversary of Kris’ passing away. It feels strange that it’s been so long, but it warms my heart to read all the posts in this thread for her birthday… Good thoughts for you all!
// HansYesterday would have been Kris’ 40th birtday, and it’s the 4th she’s missed because of CC. It’s strange that she’s been gone so long…
Such a lot of things have happened to such a lot of people in those years. Many people on this forum (most perhaps?) weren’t here then, and many of those who were aren’t anymore… Both me and her sister have new jobs, and I’ve moved to Stockholm – something Kris was very much against when we talked about it years ago. There’s a new girl in my life also, and it feels weird that two people I share so much with never met. I still have the summer house Kris and I bought and we went down there last weekend. It’s still enchanted – some things haven’t changed much.
Well, well – a bump to the thread for the big four-oh. And good thoughts for all of you!
A bump to the thread as usual – this is Kris’ third birthday (actually it was yesterday) since she passed away. She would have been 39. To all of us close to her it’s still of course a very special day. I can’t say I come to this forum much these days, but leafing through it I always notice some old familiar names, and wonder about some I don’t see. Good thoughts for all of you!
/HansToday would have been Kris’ 38th birthday. Where else to celebrate it than on this site?!
Although the aniversary of her death (Jan 4th, almost two years now) is also special, her birthday is more important to me – she was always much more focused on life than on death, and as time goes by, all the fear, pain and suffering fades in my memory, and her spritelieness and giggly laughter stand out more and more. I seldom think of her without a smile!
I thought that rather than write a new post I’d bump this one, since it has the link with the picture. Yes, I remember the twinkle just like it is in the picture…
She always lit two candles in her “prayer chimney”, one for herself and one for someone else – usually someone on this page. Tonight there are two candles burning there again, and again one of them is for you folks – all of you. I wonder how many of her cancer buddies are still around, and if newcomers to the site sometimes wonder about her stranger entries…?
Bless you
/HansLoved your post Mary, and your poem Lainy.
Almost two years after Kris I recognise almost all of it. Especially that part about it getting lighter… I like that.
Hugs
/HansFor the last year I’ve been planning to expand the puny article on CC on the Swedish version of wikipedia (which is one of the few resourses that pop up when you google “gallgångscancer”). Well, It’s done, and I’m very happy with it.
Praise me – I crave it!
Thank you so much for sharing those hartbreaking days and moments!
And I don’t think seeing your mum pass away will haunt you – being with her at that time is the ultimate expression of love and that soothing touch is precious beyond words. You will always know you were there for her when she needed it most, and that is no small comfort.
Bless you!
One of the craziest but also absolutely best things we did was to buy a summer house in need of much repair and refurbishing! Our families warned us against it, but our psychologist saw its potential and gave us much support. Kris always insisted in planning for life rather than for death, even after she had to face that she had relatively little time left. I’m not suggesting everyone should invest I real estate, but the summer house was a joint project that had nothing to do with cancer, and everything to do with having fun together and being a family! Working together there was truly therapeutic. It was a positive focus for her incredible energy. Toward the end she came to think of it as part of her legacy, and when I go out there now I feel very close to a part of her that was all about living. Her sister came over and spent last summer here with me, and is planning to come again this summer, and we feel like Kris is still part of planning, planting, painting and building… Finding a joint family project other than cancer is a piece of advice I’d give anyone.
Make time for family. With Kris’ family in the US and us living in Sweden travelling was a bit difficult. Also, with a pre-existing condition Kris could only go back home (she never stopped calling South Carolina home) for shorter periods when she had a break in her treatment and felt good enough to travel. But her family made real efforts to take time off and spend long periods with her here in Sweden, to be with her whenever she went through difficult surgery or treatments, but also to just spend time with her. In the summers she and her sister went travelling together, and really made the most of having time together. She had lived in Europe for some years, but the last years she saw more of her family than she had for a long time. That was time well spent, and meant a tremendous lot to her, just as it means a lot to them to have had that time together.
On the grim side – one of the things I’m happy we did, was to talk about her death and what would happen afterwards. About if I would want to keep the summer house, that I would be alone with the cats, what I would do with her belongings, her fears about leaving her sister alone to care for their parents… But also about her view of life and death, what she wanted done with her body, her thoughts about the funeral etc. I knew that she had left notes behind about her funeral wishes, but it took some time to find them, so I had to go ahead and plan things without those notes. When I finally found them I found that they were almost exactly what I had arranged – we had talked about it, and I knew her mind on most issues. We always agreed that the funeral was for the living, and that it was I and her family that would decide what was best for us, but that in itself was good to have talked about – I knew that she wouldn’t mind us making the decisions we felt were right.
On the practical side, there’s the problem of doctors dropping the ball. Kris always said that her one regret about treatments was not having chemo after her original surgery. Opinions were divided on the benefits of this, but it had been decided that it should be done. But her transfer from British to Swedish health care was fumbled, and when we finally established contact with the right doctors in Sweden the window of opportunity had closed. This was an experience we had again and again, that doctors and nurses took wonderful care of her and really fought for her – but only after they had met her and felt she was their patient. Whenever she was handed over from one ward to another, or from one hospital to another, they seemed to drop the ball! Not even scan requests always got through to where they were intended. This is something I fell that I as caregiver should have been more proactive and systematic about. If this is a problem in the Swedish system, where patient records are computerized and accessible from one hospital to another, I can’t imagine what it must be like in a more paper based system… This advice I would really like to stress – make a personal contact with the ward you are being referred to and check that they know who you are and treat your case urgently, this is not information you can trust them to receive any other way.
Not least, in retrospect, this community was a source of endless strength, knowledge and inspiration without which we would have been so powerless. It’s importance cannot be overstated!
Thank’s everyone!
And Thank you Betsy, I’m allright, spending today at the summer house with our cats. I find I am very greatful it’s a green winter here, as it contrasts with the incredible amounts of snow that surrounded K’s last decline and passing away. I talked to her mom a little while ago and she and her dad seem OK, although sometimes a little less so, as one night expect. We deal with it quite differently – they try to focus on other things than the pain and find it helpful to distract the thoughts as much as they can, while I think I am more inclined to embrace the pain. Perhaps a natural difference – burying your wife in some horrible way is more natural than the devastation of loosing a child, which goes against the order of time and life…
It’s my first X-mas without Kris too… A few days ago I got a new cellphone from work and when I changed the SIM-card some very old messages popped up. One of them was from Kris and read:
“Why do you ignore me so? Do you not love me anymore? Have you forgotten me?”
I love the unreasonable and slightly pouting tone! That’s one thing I really miss – all the things that made her difficult to live with! Bit by bit she’s turning into a sentimental picture of an uncomplicaded person – and she was anything but that! But here she is, ready to remind me…
Besides, it’s comforting to know, apparently heaven has a mobile phone network…
Good to hear Suzanne is doing OK. Wonder why that October post didn’t show when I did a search? Probably just my fault… Thanks for the update Terry!
Today (Nov 17) would have been Kris’ (devoncats) 37th birthday, and it’s the first since her passing away. I took the day off and took some chocolate cakes up to the hospital wards she thought of as “hers”. I remember decorating our bed room with little stars and stripes a year ago, and giving her a purple scarf who’s only real use was to be folded on the table under her urn at the funeral service… I miss her laughter – it made all the difference.
Journey’s end
Kris’ journey has finally come to its end. Saturday the 26th February we committed her ashes to the sea, outside Charleston.
Annie, a friend of the family, had helped us by arranging for a friend, Eric, to take us out on his sail boat. He brought his girlfriend Catalina along, bringing the total to seven. We had driven to Charleston in the morning to meet up with them, and it was early afternoon when we were ready to put out from the marina.
It was a beautiful day and hot, but on the water there was a light, pleasant breeze. Bright sunshine and glittering blue water. We first boarded the sailing boat where we all got very comfortable. But with the breeze coming in from the sea we needed to use the engine to get out of the harbor area. As we put out we were accompanied by a couple of dolphins who broke the surface close to our boat. They can’t have been a good omen though, because the engine promptly died before we had even left the marina. Our captain took a look at it and was not happy. Oil was leaking from it, and it was clear that it would need some sort of major repairs.
But instead of scuttling the trip, he quickly solved the problem by producing a second vessel – a small, open, outboard motor boat with a steering pulpit. It was supposed to hold a maximum of six people, but we piled in, all seven of us, and headed out. In good hands, the overloaded little craft handled the waves nicely, and we got up quite a good speed. We passed by Charleston’s historic waterfront and the harbor and headed out past Fort Sumter and Fort Moultrie, until we had cleared Sullivan’s Island and were in the Atlantic. Eric killed the engine and turned the boat so that it rode the low waves calmly.
The day before, Andrea and I had bought a cardboard box about the size of a shoe box. It was a very sweet floral scrap book like motif, in pink hues with butterflies and the text “LIVE well, LOVE much, LAUGH often”, printed on the lid. We lined it with large sheets of white tissue paper, poured Kris’ ashes into it, along with the numbered ceramic block that had followed her through cremation. Then we folded the tissue paper into the box, added some folded sheets for an inner lid, and closed it. Last I took a lucky coin that Kris used to have, and slid it under the lid. To hold it shut we tied the box like a present with a pinkish white silk ribbon that we tied into a big extravagant bow.
Now, off the coast of Carolina, we all said a quiet goodbye before Andrea and I leaned out and placed the box in the water. It floated. But the lid wasn’t tight, and we held it under until it took in some water. Then we let her sink, and saw her pink box and ribbon disappear into the deep. The end of a long journey.
Handfuls of red and pink rose petals followed her, along with a few daffodils from the family garden. After that we started the engine, turned the boat around, and headed back to Charleston harbor.
Thanks for all the support. I’ll keep you updated on you how things go.
I have to admit I feel almost presumptuous bumping this thread to the top again and again though. She has been gone for a moth and a half, and it’s shocking seeing how many more have passed away in that short time. Many of them people I remember her talking fondly about. It’s building up to be quite a crowd upstairs.
While she lived I left this site to her, but after her death I’ve been coming back to it every so often. I knew it was a double sided experience for her here – she found so much support, but also so much pain from seeing new found friends succumb to the illness that brought them together. But seeing the scale of it first hand is chilling…
