My dear sisters. Thank you so much for all your beautiful messages of support and love that I've received after my post about Alfie. This weekend was very hard for hubby and I, on many levels. Saturday was more painful than we imagined. We thought a year down the line that it would be easier, but it's not. We took time out on Sunday and spent the day with a picnic down by the River Vienne. Of course it would have been better if Alfie had been with us splashing about in the river and eating his own special picnic. We just lay down on the grass, held hands, listened to the water cascading over the weir nearby, watched the birds in the sky and talked of many things. We couldn't put things right and we cried loads but it was good in it's own weird way.
Tomorrow I am having my PET scan followed by results with the oncologist on Wednesday. My CA125 has not gone down after three doses of carbo/caelyx and I am very disappointed. It has actually gone up by 4 little points, which hubby insists is not significant since it could have been a lot more based on the jump up after chemo stopped in January. That's right of course, but the disappointment of it being the same as three months ago has hit me hard. My skin is awful. It has aged 100 years in the past months and I'm all over dry and crinkly. It is not sore or split but I can't wear my wedding ring at home anymore as the skin is peeling underneath it worse than other places. I seem to leave a trail of dead skin dust behind me everywhere. (No, not really. It's just my sense of humour does creep in, even at the worst of times). The lumps on my back, which my GP said was a virus, are now spreading out - there's no more of them but they are fatter. I'm going to show the oncologist on Wednesday in case they are caelyx related as I'm on funny pills for 4 weeks to tackle the virus but after 2 weeks there's no change. No point in taking them if the GP is wrong.
On top of that I'm all white and pasty. I think I'm the only person in France to be so unhealthy looking. I noticed today how people were tanned and gorgeous. I'm just pale and uninteresting. It's so lovely here - 33+ degrees most days - but I can't go out in it, even with the factor 50 on, as I'm worried I'll burn up. Also, it's a bit too hot for working in the garden and housework isn't on my agenda right now.
Hubby and I joined another art group today. It kept our minds focused on other things for a few hours but normality returned soon after. I hope my mood changes. Maybe it will after Wednesday when I know what's what. It's the not knowing that gets to me so much.
So, with all this in mind hubby suggested I have a few days silence. I think he may be right. I am still reading your posts avidly but I won't post if that's ok. By the weekend the old Kryssy should have returned. I hope so. I will post my results, one way or the other, at the weekend, once I've had time to digest any bad news. In the meantime I want you all to stay as well as you can and keep those that you love the most as close as you can and love them to bits, even if they are thousands of miles away.
My love to you all. I'm sure I would not be here now if it wasn't for you lot out there.
A bientôt mes amies. xxxxxxxxxx
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Kryssy
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Don't feel down Kryssy, I know it gets us all sometimes, but today is all that matters. Worrying is bad for the soul. I've sent you a message hope it lifts your spirit.
Hello Kryssy, I hope the news isn't as bad as you fear. I know exactly what you mean about not knowing but whatever that scan will reveal is already known, just not by you. I remember reading that stable CA-125 can be an initial result of Caelyx. But if it so that it isn't working, they'll be another plan for you.
And pale skin can be interesting. I think for many centuries a tanned skin meant you had to toil in the fields all day and wasn't at all seen as healthy.
The art group sounds interesting. What kind of things do you do?
Have a good fat wallow in self pity for a bit. Cry, write down all the stuff you feel sorry for yourself about.... and then see if it feels better. Sometimes I just do that because we have a lot to feel sorry for ourselves about. Letting it out is good I think. Nobody can tell you how to deal with this but I think anyone in their right mind would feel like this with all the shit you are holding onto. I really empathise. Recently things have gone from bad to worse and I just sometimes moan. Oh yes I’m sure it will have up moments etc and we had a lovely holiday and my 21 year old son (briefly here) made red currant jelly with me tonight because he could see how I was struggling physically and mentally with it. It was such an unexpected oasis of pleasant time among the ascites, the pain, the worry of the heavy chemo to come and the bastar* cancer regrouped and recharged. There will be diamonds in the dung heap but just let yourself feel at ease enough to moan.
Sending you some spiritual moisturiser xxxx Netti xx
Take time to get ya head straight you've earned that hun. Everyone gets in this place...youre one of the most positive people on here with sound advice and a great sense of humour...but ya human!!! Best of luck with results it's such a ba$tard disease messing with us all the time....hope to hear some light at the end of this tunnel real soon xx cyber hug right at ya!!!!!! 😍
Sometimes the fighting knickers just don't work do they? I think the elastic must go. I'm sure you've got a new pair somewhere, just relax until you find 'em.
04.10 and I’ve been up for an hour. Yesterday was a good day but It’s not good now. None of us can be positive all the time, go and have a wallow for a while, a few hugs with hubby and a good cry. Please do come back though ❤️❤️❤️❤️
Thinking of you, Kryssy. Can so identify with how you feel. Scan Time is always a depressing, frightening time, I find, which then affects everything else. I had to wait three weeks for my result, last time and it was an awful time. Couldn't believe my mood swings and my husband was the same. Hope you hear happier news on Wednesday and can perk up a bit. You've a double whammy with it being the Anniversary of Alfie's death, as well.
Kryssy--I want to write all the positives to try to make you feel better and I know sometimes allowing yourself wallowing time is good but my onc told me that it is usually around session 4 with Carbo/Caelyx that you start the see the real action/results. I also think 4 points up is negligible. I know you will know soon so I'll stop there. Just thinking about you and hoping the time speeds by between test and results. Its such a hard wait. Love the image of you and hubby holding hands and listening to the sounds of nature, crying, etc. Really a touching image. oxoxox Judy
Take all the time you need and just be with how you are. Or not! We all go through so many emotions and different phases, sometimes all in 5 minutes or 5 months! I know I switch from feeling ok to tears to shouting to feeling low, being exhausted, giving up to being cheerful and cracking jokes etc! U name it, I think we go through it and its all normal and ok, even if it doesn't feel that way.
I know caelyx can take a while for results and sometimes they swop folk to something else. The skin scene is very tough also for some. I refused it but may have to possibly face it in the future, so good for you for having it. Hoping for good results for you. Sending lots of hugs from Australia and thinking of you.
Am thinking of you. We all are. You’re such a massive support to us all. You’re always informative and witty and a lovely intelligent caring lady.
Life gets tough. It bloody does. Add to it this shitty little disease and life becomes overwhelming.
Please know that we are all here for you.
I owe you so much. You’ve helped me enormously.
If I could make things better for you, I would in an instant.
I’m sorry about Alfie. Dogs are amazing loyal lovely friends. I love dogs. We can’t have one as we work all day but we borrowed a dog today. She’s called Amber. A staffie. Soft as anything. She’s my friends dog. I love all animals. Not spiders. I won’t hurt them but they make me feel ill.
I hope your art goes well. It’s very therapeutic. Paint how you feel.
Sending you the biggest hug and loads of love. Xxxxxx
That waiting has always been the worse thing and there's nothing we can do about it. I think our thoughts go full circle and cover every scenario during this period.
We'll all be thinking of you Kryssy and sending happy thoughts.
Sorry for the late post but I wanted to send you my best wishes anyway, Kryssy. Your erudite posts are always such an uplift for many ladies on this forum, me included.
I sort of hope the 4 days (and maybe the new art class) have gradually brought you some distraction if not relief from your nasty chemo side effects and the understandable despair.
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results of 125 and scan not good
Thank you to everyone for all your support
Back from London, tired, but hopeful
Hi you lovely ladies me again
Meeting with oncologist quick update
