1

(37 replies, posted in In Remembrance)

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!
/Hans

2

(19 replies, posted in Members' Cafe)

Oh dear, I'm afraid I haven't seen this untill now! Kris was always the one who used the forum (there is a lovely thread where she opens a discussion on how it affects a relationship and freedom of expression on the board if both patient and caregiver use it), and I check in very seldom nowadays.

The answer at last is yes! I was worried, because the pigs dug up the tulips planted all around the base of the tree, and in doing so uncovered some of the roots. But two years after the first and worst attack the tree is doing fine. No plums on it yet though.

3

(37 replies, posted in In Remembrance)

Today 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
/Hans

4

(12 replies, posted in In Remembrance)

Loved 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
/Hans

5

(21 replies, posted in General Discussion)

For 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!

6

(24 replies, posted in General Discussion)

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!

7

(19 replies, posted in General Discussion)

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!

8

(13 replies, posted in In Remembrance)

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...

9

(13 replies, posted in In Remembrance)

A year ago today Kris passed away peacefully in her sleep. Her last 24 hours had been difficult, but that seemed to have passed, and she was tired but not really confused. The last medical news had been encouraging. She knew that she was dying, but she was not without hope. She was never without hope.

Some three months before she had written this:

devoncat wrote:

I am terminal. I will die. Most likely soon. Yet I have hope. I will always have hope. Hope does not have to die when the facts are given. The doctor knows statistics, he knows what is most likely to happen, not what will happen. I hold onto that. I have seen wonderful things on this site as well as truly heartbreaking.

Kris

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...

11

(19 replies, posted in General Discussion)

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!

12

(19 replies, posted in General Discussion)

Since Kris passed away almost a year ago I've been neglecting this page (which was her home territory rather than mine) but when I've been browsing through it lately I can't seem to find anything by Suzanne (Suzannegm) after February. Does anyone know...?

13

(37 replies, posted in In Remembrance)

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.

14

(134 replies, posted in General Discussion)

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.

15

(134 replies, posted in General Discussion)

Saturday we held Kris

16

(134 replies, posted in General Discussion)

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...

17

(134 replies, posted in General Discussion)

Kris made it home to South Carolina safely and without any drama yesterday. We got in late, but Andrea picked us up at the airport.

It was a strange feeling in many ways - I took the same train and flight to Frankfurt that Kris and I took in December, and then flew the same routes to Washington and Columbia we flew when we went there for her last family Christmas a year ago. For years I've imagined carrying her home in my hand luggage, and that's just what I did.

The potential problems about flying with ashes that I'd worried so much about turned out to be a complete nonissue - no one even asked to see any documentation and security made no trouble at all.

All seems to be set for the second memorial on Saturday. But right now I'm just happy that she's home at last...

There is one key difference between Wikipedia and a traditional encyclopeda. Wikipedia entries don't have to be brief. Fluffing an article up with nonsense may not pass such review as there actually is, but as long as you're providing material information there really is nothing hindering anyone from adding more info, or making the language a little less harsh. Or rewriting the whole thing for that matter!

19

(24 replies, posted in General Discussion)

What to say...? The leaves are falling one by one. I'm so sorry.

20

(134 replies, posted in General Discussion)

Yesterday we held Kris

21

(134 replies, posted in General Discussion)

Yes, "new normal" is what Kris would have called it also smile

I still talk to her of course, but I find more and more I talk to myself about her, rather than addressing her directly. And I speak Swedish (which I'm sure would annoy her greatly) which is so odd after having had English as the household language for four and a half years. I used to speak English to the cats even if Kris wasn't home, but now I've switched. Very odd.

I'm still quite busy, and the things I do is still helping Kris in a way, but I'm a little afraid of what it will be like when "new normal" really begins. When I'm back at work after taking her back to the US I suppose... It will be empty then...

22

(134 replies, posted in General Discussion)

It's been two weeks precisely since Kris passed away, and almost one week since I returned to Sweden with her ashes.

Things are starting to come together fairly well here. The wheels have been set in motion with German, Swedish and American authorities, and so far it looks like the procedures will run parallell rather than one having to wait for another. The plans are starting to come together for a funeral service here in Kalmar also. It will be simple enough, but probably not quite as small as I had thought.

I've booked the small chappel where Kris was planning for us to renew our vows (I'm not quite sure if she really knew it is actually a funeral chappel...) for the 31st of January, and I'm starting to look at what I want the service to be like. One of my absolute favourite pictures of Kris is actually the one she has as her profile picture in the "faces" section, taken a few years ago during a visit to Glasgow, and I'll try to have it enlarged enough to put next to the urn at the service, if it comes out clear enough. And I'm trying to pick a Jimmy Buffet song or two to play. (Before we moved in with eachother she dumped me about once a month, and one time she said good bye with a personal selection of Buffet songs where she had written little comments about what certain songs meant to her and why they reminded her of us. I think there is one or two in there that might do nicely.)

Still no papers from the US embassy so I don't know if getting a travelling permit for her ashes will be difficult or not.

I've started going through her stuff bit by bit, and it's more difficult and emotional than I had thought. A bit like an archaeological expedithion to our relationship. And I haven't even started on any of the difficult stuff yet...

I was up at my office the other day and everyone was all hugs and tears which felt really good because I've allways shared so much of what was going on with Kris with my colleagues. Especially one whos mother passed away from CC a year ago - what are the odds of that? - we had a good cry together now.

The more I think about Kris and me the more it strikes me how short our time togehter was, but how intense it was! We moved in with eachother four and a half years ago, and although we had been dating for more than three years that's when our life together really started. Four and a half years. But it feels like a whole lifetime.

23

(134 replies, posted in General Discussion)

Yes, I remember she wasn't too happy about the beard...

The weight thing was odd though, because when she was on chemo about a year ago (I imagine the post was probably about that time) the steroids would make her regularly gain about a pound per week, which kind of defied expectations.

Weight remained difficult. During the two-three months or so before the end she lost a lot of muscle but retained lots and lots of water. Her weight remained perfectly normal, but her shoulders and arms were mere skin and bones, and we speculated a lot about what her "real" weight without the excess fluid might be...

--------------

I was very, very touched to see the two threads about Kris in the "in memory" section. I hadn't seen those until last night.

The cremation took place yesterday. I spoke to the undertaker on the phone and we've agreed on meeting in a hotel at the airport Wednesday morning so he can give me her ashes and the paper work I need to transport them. Then we fly to Copenhagen where another wonderful friend is picking us up to drive me and Kris home...

Barbara has made a little shrine where I can light a candle for Kris. There is a purple hyacinth, a small guardian statuette that Kris originally had given to her, and which she sent back to Kris in the clinic to watch over her, and two photos of Kris from Glasgow in the good old days when the world was brighter and she was ready to take it by storm... In every picture I see of her from those days she always has the same expression - her whole face is smiling and she is barely able to contain an flood of giggles.

24

(19 replies, posted in Members' Cafe)

Yes, well the wild boar ate more or less all the tulips two months ago. (Kris was really heartbroken when I told her, because she had really thought of them as a legacy...)  But it seems they didn't like the daffodils...

25

(134 replies, posted in General Discussion)

I've never been a user of this forum myself as I felt it would be better for Kris to have an outlet for her emotions where I wouldn't be looking over her shoulder, and she wouldn't need to consider how I would feel about what she wrote. I got my own user name here so that I could post news when she was in hospital without seeming like the abusive spouse spying on her and figuring out her passwords... Looking through her posts now, I actually found a thread from three years ago where she discusses this, and her mixed emotions about wanting me to have your support, but also wanting to keep this forum private. I remember we talked about it also.

Anyway, I don't think she would mind me reading her posts now, and I found something quite touching... Joyce posted in this thread that Kris would never rest in peace, because she would rock everyone's world in heaven!

Well, years ago she wrote almost exactly the same thing herself (I think she skipped a "not"):

devoncat wrote:

Thanks for all the support and LAUGHS. I was laughing out loud in that way that is very weird when you are at the computer.

Joni, Joyce and MArion, your hugs and support mean so much. Sometimes a virtual hug is all you need to make you feel better. Thanks.

Peter, you are right Heaven is quite ready for me, yet. I think I would try to rearrange the place in Swedish retro style and serve SC style bbq at the gates while I was handing out margaritas and forming a mamba line-let alone the red hair. I think God wants heaven to remain peaceful a little while longer.

Patrice, nothing but the best wishes and thoughts for your sweetie. I hope that everything works with this chemo and lets not just hope he feels better. I am a greedy cow and I say lets hope he feels GOOD after!

Now, Richard, you really must stop making me laugh. What is going to happen when I have the drain in and I laugh so hard it leaks. I will fully blame you. smile

I swear life already feels better.

Perhaps God got bored...?