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General health
MaryAnnSingleton ·
18/02/2011 10:29
I rather like Roamn day - do hope dd has fun !
Let's hope for a nice day for everyone 
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MaryAnnSingleton ·
18/02/2011 12:45
aww,the seller on etsy has refunded half of the customs charge which is very decent of her
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SparkleRainbow ·
18/02/2011 12:45
I am not a believer in ghosts and spirits Cakes, but I am a great believer in the power of the human mind. I strongly believe in the "spirit" of a person we have loved staying with us in our minds, which can manifest itself by seeing things briefly through their eyes. I still do this now for my Grandfather, my Dad and my best friend who died when she was 16. Things connected to experiences we shared, bring back not only memories for the past, but somehow mingle with how I would expect them to react if they were still alive. But heh that is just me, and I am very open to all the experiences of others, people experience the same things very differently. Hope your mil is coping with the distress she is feeling about her dh's presence.
I like the idea of Roamn day too. Hope your dd isn't cold Cakes!
MAS am joining you in hoping for a nice day for everyone
Big hugs LJ, and Figgy.
Cakesandale ·
18/02/2011 13:12
Decent result on the earrings, then!
Fingers firmly crossed for the move.
Sparkles, you may well be right. Personally I'd want more than jiggling watering cans as proof of a presence, but it seems real to her. She is quite an exciteable woman 
DD is going to be frozen, and quite possibly falling over the hem of her skirt too. I offered to turn it up but it was also hanging in dangerous fetching folds on the floor in the photo in the model, so she liked it. I was toying with the idea of being healthy and walking to collect her later, but perhaps this isn't the day for it...
smee ·
18/02/2011 14:40
Already a nice day here, as I have a large take out latte in front of me and have got lots done. [smug emoticon]r
Cold Cap thoughts for LJ (and possibly for Figgy too) :
My Onc and BC Nurse said why not give it a go, so I did. I have very thick hair cut into a short bob. Thick hair makes cold cap more likely to work. True in my case, as I lost lots and lot but I mostly kept my fringe and also a thinner version of the back of my hair. Most common place to lose hair with a cold cap is on top, which is exactly what happened to me. I had a huge bald patch across the top of my head, but only really bald by about 4 treatments in.
Positive things about Cold Cap: Pretty obvious really, but having some hair meant I could go out with a scarf / hat across the bald patch, and not scream 'Cancer' at everyone. That was a huge thing for me in terms of my son, as it meant we didn't get sympathetic looks or questions, wherever we went. In the end, I only told one of the other mums at school and many still don't know. Was just my way through it and certainly doesn't mean it's the right way. Lots of people find it easier to let everyone know and in a way I wish I'd done that, but I found it impossible to tell people at first, so that's mostly why I didn't.
[Diversion alert, but regardless of hair loss it's just struck me, that this shows how life can mostly go on during chemo - if you think I managed to do the school run, virtually every day and still no-one noticed anything!!]
Not so positive things:
- You will still lose lots of hair, and there's no guarantee you'll keep enough to make it worthwhile.
- The actual wearing of the Cold Cap is a bit unpleasant. You look totally daft wearing it and some women find it painful. I found it tough until my scalp got used to it, but that only takes about 10 minutes. By treatment 3 I had a weird reaction to the Cold Cap, which meant I threw up as soon as it went on my head. The Nurses said they'd never seen anyone do that before, but then I do so like to be different...
- Wearing the Cold Cap means you have to be at the hospital for longer, as you need to put the thing on half an hour before chemo drugs are given, then dependent on the drug, you have to wait for up to two hours afterwards before they take it off. At the very least, I'd say you'll be at hospital for an hour longer for each chemo session.
- Hair regrowth is a bit bizarre. I hadn't thought this through, butI can no longer wear a scarf/ look normal, as though the hair now easily covers my bald patch, it spikes up, so a scarf won't lie flat. The new hair is also incredibly curly (v.common when hair comes back apparently) and doesn't match the remaining straight hair, which it pokes through looking basically like a very bad perm. Basically means my hair looks awful - but then again it's wooly hat weather still, so for now I can get away with it.
I think that's about it - you can of course wear a wig, though mine never quite suited me, so I never even wore it out. A lot of woman seem to find that. Maybe others on here who just went with the hair loss should say how they found that. Might help you to decide.
Hope that helps a bit. Better do some work again now, but just quickly.
MAS, really hope your mum is having a better day. Jelly Babies are a great idea. Your Dad does sound lovely.
Sparkle, hope the wine worked and today's brighter. What is it about sisters?! I only have a brother, but every single friend of mine with a sister seems to have huge problems with them. Seems a huge shame.
Cakes, genuinely hope DD's toga didn't come adrift..
smee ·
18/02/2011 14:47
Phew, huge post - just on a slight tangent because we're a bit Roman themed today. DS loves Asterix, which are mostly fine for six year olds, but there's one bizarre one, where the Romans spend the whole story gorging on fondue and orgies. Was quite a moment when he asked me what an orgy was..
LimeJellyforBrains ·
18/02/2011 14:57
Hello all - just a quick flying visit as am in the throes of packing/rummaging etc.
Visit to the onc was not at all scary in the end (although the promised tea didn't arrive). Lovely friend who took me did stay for most of it (then had to go move the car) and waited to take me home. She's fab
Most of it was him telling me what I already knew really about what they have found so far.
Some of it was him persuading me to go private by offering things like a port (sounds good idea, have small veins and nervous about damage to right arm following plate op), cold cap (many thanks for your input Smee) and Taxol weekly instead of Taxodare (?) 3-weekly.
So the plan is: start in 3-4 weeks with 4xFEC 3-weekly, followed by 12xTaxol weekly. He is of the opinion that Taxol weekly is better tolerated. Have done some Googling (naturally ) and not sure there is much if any advantage.
Also realised when I got home that the Taxol bit will coincide with school summer holidays, so am now getting a bit unsure of the weekly thing. What would I do with the boys for a day every week? Would also make it difficult for us to have any kind of a holiday together, even for a few days, if I have weekly appointments. Also difficult to work around any activities for them. Do any of you have any thoughts re this?
Oh no - school run time! Off I dash - hope to come back later. xxx to everyone
Cakesandale ·
18/02/2011 15:15
school run here too. I don't have advice on what he has said: I had 6 x 3-weekly FEC which worked quite well for me in terms of getting on with real life. I am not sure about Taxol weekly - maybe someone else will. I am glad there were no nasty surprises and it went well, if a little drily. I wonder where the tea went? I suppose biscuits were missing as well? 
I went with total hair loss and a scarf just refused to acknowledge or discuss it with people (other than friends I mean). But then I am quite stubborn.
I'd pre-warn the school though.
MaryAnnSingleton ·
18/02/2011 15:18
bugger- my message was lost !
It wasn;t very exciting though ! Am glad the meeting with the onc wasn't scary LJ and it's good to have a plan.
Bless junior smee asking about orgies
Off to see mum later
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KurriKurri ·
18/02/2011 15:42
I'm glad the onc. visit went well LJ, and you have your plan of action in place (and a few weeks to get your supply of chemo treats sorted ). I'm afraid I don't know about taxol weekly - I didn't have that regime (I am wondering if Sandripples may have had that one though - I could be wrong)
Regarding the cold cap - I had it but lost all my hair just before the second session IIRC, so there was no point in carrying on. I think the problem may have been that I have a very small head
so there wasn't very good contact with the cap. But for some people I know it works quite well.
I hope little Cakes doesn't freeze in her roman outfit - there's a brisk wind blowing in our neck of the woods - it sounds lovely though.
Love to everyone else - can't post much - I went to the lunch and on the way home I was terribly sick in the car (delightful )
and am now sitting in bed with a bowl 
- thank goodness didn't make a complete show of myself at the restaurant. Don't think it was the food because DH had exactly the same and he's fine. 
smee ·
18/02/2011 16:09
G'ah, poor Kurri. Do you think it's a bug then?? Does sound like it. What a shame after a lovely meal.
LJ, great to hear the Onc visit went smoothly. I had 3xFEC, then 3x Taxotere which is similar to Taxol, though I was on the every three weeks regime. I seem to remember reading if you have it weekly it often decreases side effects, which is not to be sniffed at.
During the Summer Holidays is annoying. I had that last year, but having it every 3 weeks, did mean we had time to get away for a few days. Main thing is what's the best treatment though, so if your Onc says that's best, then I'd say go for it. You could maybe still plan weekends away around it?? You can usually tell them which day of the week you'd like to have a session, so that might help.
LimeJellyforBrains ·
18/02/2011 16:36
Oh Kurri poor you! And brave you posting from your sickbed Hope the lunch was good enough to make up for losing it?
Hope your mum is happier today MAS, and that nasty man has not made an appearance. Any news on her move? Everything crossed for you here x
Smee - Glad you're having a good day, well done getting lots done x Thanks so much for your info re Cold Cap. Think you have just dissuaded me further , but we shall see. My hair, although long, is not that thick any more. May be better to let it go and start again - am secretly hoping for this thick curly grow-back a lot of people seem to get . Worst thing for me would be mixture of long, rather thin wavy hair and bald/regrowing patches!
Most of the people I care about know what is happening with me. Those that I don't care about....can think what they like. I can always take my specs off so I can't see them . In truth, have never worried too much about what others think of how I look (much to DH's despair/embarrassment sometimes!) so will just have to develop that further. Used to be quite an 'eccentric' dresser in my day, so I'm used to brazenly wearing odd headgear etc. Also, like Cakes, am stubborn!
Cakes - having done just the school run in that biting wind, hope your DD didn't get completely frozen today. DS2 is also 'doing' Romans this year, we have to supply food for a 'Roman feast' some time in April.
And since you mentioned the lack of biscuits too, feel quite hard done by!
Hope you are feeling more 'up' today Sparkles, and that DS is well.
SparkleRainbow ·
18/02/2011 16:43
I am glad the onc appointment was ok LJ. I hope that maybe sandripples can answer your question about weekly Taxol. I think smee is right though, it that it may be a pain that it coincides with the summer holidays but you must go with the best treatment, and it is only one summer holiday, and you are going to have many, many others Have you got enough friends around you, who you would share what is going on, and could rota having the children one day a week in the holidays? Really lovely that your friend was able to stay for nearly all the appointment, and then drive you home. I am glad you have special people taking care of you.
Oh poor Kurri,I hope you are feeling better soon.
Smee am making a mental note to keep my ds away from asterix and any discussions about orgies
Ds currently revelling in fact that his phsyio said he could included time on the wii balance board as part of his physio programme. Having to take a pause from keeping the world safe smee, in order to be a penguin and catch fish! Hope your ds has got world safety covered!
SparkleRainbow ·
18/02/2011 16:49
Ds is ok today, thank you for asking. I am still flat as a pancake though, just don't know why. 
did help last night, fell asleep on settee, so evening went by quite quickly . Am having very disturbed sleep though, lots of dreams, all about ds in one form or another. Had to get up and check on him in the night, cos I felt in such a state. Haven't posted the reconsideration yet, but I am going to do that on Monday, so they get it on Tuesday, maybe I will rest more easily when that is done. Who knows.....
Just have general feeling of unease and trepidation (sp?)
smee ·
18/02/2011 16:55
Sparkle the world is in danger!! Your son's being a penguin and mine's eating pizza at a friend's house...
Sorry to hear you're still feeling so unsettled. Friday night, so try and switch off if you can.
SparkleRainbow ·
18/02/2011 17:00
Oh no what shall we do...... Ds is too busy laughing at his little sister copying him being a penguin to be called back to duty.....world you are on your own!
More is on the agenda for tonight. Please join me Have I poured enough glasses for everyone?
MaryAnnSingleton ·
18/02/2011 17:33
oh sparkle- sorry to hear that you are feeling flat - will help -am looking forward to a chilled glass after hospital visit. I don't care much for the drive in the dark as it's very dark and incredibly twisty- gorgeously scenic in daylight,but dangerous at night...hope mum is ok- dad went this afternoon but wants to go back.
Am hoping that Super Smee and Super Sparkle boys will finish eating pizza and being a penguin to keep an eye on things.
I have done no work still- am slightly panicking
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SparkleRainbow ·
18/02/2011 17:48
Panic over super sparkle is back saving the world with super bounty hunter rockets......don't ask, something to do with lego star wars. I stop listening and just grin and occasionally when he is explaining....., just have to remember not to nod when he asks if I want to play too!
How bad is it that I have already poured myself a small, it really is small, glass of ?
smee ·
18/02/2011 20:50
Sparkle, rest assured, I've joined you with the
So glad your DS is on the case. Mine is in a huff. I insisted he couldn't wear his Samurai warrior's sword and scabbard in bed - led to much teeth gnashing and foot stomping, though he soon stopped when I said I wouldn't read him a story.
Wine is definitely the answer here, though am no longer sure what the question is. Been a very long week. Wishing everyone a great weekend.
Kurri, hope you're feeling a bit better by now.
Figgy, thinking of you too.
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