Hi ladies, i too have been really upset lately about all the friends we have lost especially as some of them had skin mets. There seem to be so few of us left now but i would really love this thread to continue...i have learned so much and got so much support through it, even from the non skinnies who post regularly.
i am back with my onc tomorrow for results so may be a little while beore i post.
Love to all ,including those friends who arent posting at the moment...i hope yo are all ok. xx
Thanks, Carolyn. I do drop in on the bone mets thread daily. I am bone and skin (which is currently 'under control'.......lung mets disappeared). But I seldom have anything useful to add, so I just keep reading! I used to chat with Marirose here.
DBNO......I also think of Belinda, Bumpkin, Wolfie......and catlady, who was very active when I first dropped in to these forums about 2 ears ago. Lots of shocks. This thread is important for skinnies........not much known out there, so real people's shared experience is valuable. I think it was Belinda who said it was a very human and kind thread too, although I don't think she had skin mets herself. And it is important to have a skin thread for anyone new to find info and support....so I'll keep visiting!
All the best to everyone for 2017. Longer days should lift the spirits. But so cold now. I think I'll go to bed to get warm!
Hi Mo and Carolyn
It seems to be a hard time of year. As Christmas approached my thoughts turned to Belinda, then it'll be a year since we also lost Wolfie at the end of January, and Bumpkin at the beginning of March. I think of them all often and miss them too.
Hello too to Stresshead, Moijan, Daisy and Janice (if you're checking in at all). Sorry if I've missed anyone. I hope you're all doing okay.
It would be good to keep this thread going, it's been a bit of a lifeline for me over the last couple of years and may provide a source of help and support for others in the future - though I'd like no-one else to feel the need.
Love and hugs to all.
Hi DBNO, yesi was upset too.. Lovely lady and sadly she was quite ill but bore it bravely and quietlyxxx
My heart sank when I saw the dedications page. I haven't done a lot of posting of late but Marirose regularly PMd me so I thought perhaps something was wrong. It's a very sad start to the new year. She was so kind and lovely to everyone. I shall miss her very much. My thoughts are with her husband, family and friends - including her BCC friends.
oh no, i cant believe it. Marierose was my ECT buddy and gave me so much love and support. I am truly lost for words. Both Marierose and Ellie within a month or so....this b*****d disease!!!! My love and thoughts go out to her family. I will miss her so much. Rest free of pain and worry my dear friend. xxx
Thank you for letting us know Lovewine. Dear Marirose. She really supported me........everyone. But she is free, and flying high now. Just don't know what to say...........
Hello ladies, so very sorry to tell you i have just read on the dedication/ remembering thread that mariroses husband has posted the very sad news that she has passed peacefully away this morning, i didnt know her, but often read her posts and thought she was so incredibly supportive and kind, i read on the thread you were worried as hadnt heard from her for a while. Really sorry to be the bearer of such awful news.
Thank you for asking, Daisy. I'm just the same......but a little worried about Marirose as she hasn't posted here for a few weeks, and wasn't too well the last time she was here. There is a lot of bad coughing about of course..........poor old Queen for example. You are very good to keep an eye on us! For myself I am waiting to hear from stresshead after her scans. Her 'owl' will make a decision then. But I am expecting that to be a few weeks off yet.
how are you? I too hate this weather and only second to snw...as I feel thats quite dangerous...but very pretty of coursexx
Havent heard from Marirose, hopefully you are feelng better Marirose?.Are you on Eribuln? Withasmile and I could do with a few more chemo buddiesxx
Stresshead, how are you dong too? Do let us know how its goingxx
Love and hugs,
Yes, Marirose, I agree with Moijan.........hoping you are feeling better. Are you on eribulin now, and could it be that? Have you asked for something to control it if it is not settling? Rather obvious question I suppose, but thought I'd ask anyway. Any appts coming up? Thinking of you as always.
And Moijan......your advice and comments to stresshead are so well put. 'Travel hopefully' is good advice for us all of course, but particularly for someone like stresshead who has to wait. How nice to have an owl for an onc! She is lucky as he seems to want to think it all through carefully before plunging into anything.
Drab day here......typical January. I await March winds and spring!
Mariros, how are you now? Hopefully the sickness has gone?
i dont get many side effects from Eribulin but this month ive had sore finger tips nd a sore,outh, but these are unusual, so maybe your sickness will buzz off!, Li do hope soxxx
yes your onc sounds very wise...more like an Owl than an Onc!
It would be a bit reckless not to take everything into account. i wonder what chemo he will reccommend?
i know its a tough one Stresshead, but we just have to wait.....so you have a little respite until the results.
lets see ...maybe you will be surprised? Travel hopefully, but take some time out meanwhile.
lots of love, we are all here for you
Daisy, Lovely to hear from you. You make a lot of sense and you are right.........stresshead must be positive for now. Did you hear that stresshead?! The skin bumps may be very local.......skn mets can have a little life of their own.......and her onc is being very careful. But waiting for scans is part of all this!
You say your little one has become 'naughty'! That sounds like a normal, very healthy and clever 4 year old! He will test the boundaries.......he is learning. About everything. It's fun to get mummy a bit cross, and he knows he can rely on mum. It's because you are mum that he can be a bit naughty with you. Safe. And Christmas is a very exciting time. My little Anna can be difficult too, but she is getting more patient now at 5. She came for a few days last week and I tried to be prepared! I have made a little house with fridge boxes, which she pretends is a cafe. I buy tea and buns. i made a farm playmat for her little farm which she likes to set up. Best of all was the puppet 'theatre'..........a duvet cover hung in a doorway, with a hole cut. I made spoon puppets.........3 bears, wolf, cinderella, red riding hood, etc. It all kept her busy. Me too! Your little boy would love pirate puppets! Battles! Action!
Take care, Daisy. Thank you for popping in here and checking up on us. i often think about you and your mum. She was snatched from you so suddenly and to me unexpectedly, but tell your little boy about her, and what you played with her when you were small. I talk to my mum & dad every day. I hope you have a calm 2017. Hugs to your little one,
Stresshead, Thanks for your update. Your onc sounds very interesting. He sounds as though he wants to tailor your treatment carefully for YOU. I think he is using his theoretical knowledge plus his experience together. Holding off on the chemo for now could be a good idea............take the little what-nots by surprise. I wonder if he has been through a similar situation before? I know it isn't easy for you now, and what I'm saying isn't much help, but it seems he has a plan for you, and wants to know as much as poss.........scans........before pressing on. Being patient is so hard..........I know I like things to happen NOW!......but you are right that you are in good hands. He is being careful and obviously feels you can afford to wait.
Thanks again for the update. Hope 2017 brings good things for everyone here. Now that I'm older Jan and Feb seem like dark empty months to be survived! Bring on March! Take care,
Hi ladies, seen my oncologist this morning and still he wants to wait beore startig any treatment. He agrees that i have more lumps nder my skin but says it is very l;ocalised and wants to get my scan done before he does anything. the next step will be chemo and he wants me to be of chemo's as long s possible to give it a bette chance of working when i do have it. Cant say i'm relieved, happy or anything....just very stressed. Still, my onc is a really good guy and i do have faith in him so just having to go along with what he says. watch this space. Hope everyone is faring well. x
Thank you Carolyn. I have been wondering about Geidre myself, especially because the Hallwang clinic has been in today's news. Or possibly yesterday's. The person in the papers used go-fund-me to get enough money for the clinic in Germany and it seems to have worked for her after reaching the end of NHS treatments. I don't think we have immunotherapy cancer treatment here.......yet. Hm.
Happy New Year to everyone! I have quite lost track of what day it is.........a Bank holiday tomorrow is going to make that worse. I think I am ready for everything to get back to 'normal'. I hope all those who haven't been too well are feeling better........particularly you Marirose as it seems to have hung on a bit for you. Perhaps you had a virus rather than a foody tummy upset. But I hope it has all cleared up now. The days just have to get longer soon.........
Hi skinny friends
The sickness has remained Moijan all week once I am sick I feel better but I wish the rest of me would feel better.
Happy New Year to you all love and ((((hugs)))) to you all xxx
Hello everyone, sorry Stresshead, Marirose and Carolyn...,about the sickness......what a nuisance..hope all feelng better now?
strange Marirose and Stresshead..both seeing the oncle on 4th...a coincidence!
i see mine tomorrow...or hope it is him...as last time the reg seemed to get me muddled with someone else..by the letter she wrote to my gp! Very odd.
anyway, will bring it up tomorrow!
love and hugs
Oh dear, sorry to everyone that hasn't been well over Christmas, was it the unaccustomed alcohol...hic!! I had some mulled wine Christmas Eve and have also felt sick Christmas Day and Boxing Day, luckily we had our turkey and trimmings yesterday evening as the young had other relatives to visit, was delicious and my first meal all Christmas. No tipples though, shame! xx
Hello Skinny friends
Sorry your Christmas got spoilt stresshead I was throwing up christmas morning but it did not spoil my Christmas dinner thankfully but I could not eat my usual amount and I did have the pudding too but tea time was a no-no why spoil it by trying to push more down.
I see the onc on the 4th I must get my list together there are alot of questions I want to ask.
Well everyone have a nice New Year don't get too drunk
Love to all (((hugs))) xxx
Hi all.....hope yo all had a good time...some of you sound as though you had a very 'merry' time...good for you. Our christmas has been awful but not for the obvious reason. We went out on chriostmas eve for a meal and dont know if it was that but i was sick all morning and couldnt face dinner, drink, anyhting...feel terrible as it ruined my daughters first christmas dinner in her first real home.My husband has also been ill, cold and shivery. I spent all boxing day and night asleep and have only just got out of bed to have my line flushed . Feel better now but know i still have to face the music...or rtaher everyone else does. I am seeing my onc on 4th so will pdate you then. Love to all. xx
Hi Stresshead, have been thinking about you...how did it all go? Better than you expected?
do come back and sharexxx
Marirose! Was checking to see if youd been on? i have been thinking about you too....how are you?
Ooh that sound tempting.....at this end...in my stocking this am I found a large bag of those chocolatey thingys I handed you in Bristol...cant recall the name! Oh bleep....kitkat?
frozen...well your grandchildren will want a repeat??
peace and hugsxx
Hi Carolyn, Stresshead, Marirose,
hope all is going wellxx
am, latterly alittle tipsy,
have just been watching the Wizard of Oz ( again) and found bits I hadnt remembered...
enjoye the rest ofthe dayxx
Hi Daisy,Just got home from church! Of course you miss your mum. (I miss my dad too...tho he was really out of it these recent years.) christmas always reminds me of previous ones when loved ones were aroundxx
have a good Day tho Daisy with your family. Love and hugsxx
sorry things havent been pleasant. And I find that then, its easier to start thinking the worst sort of thoughts...
yes...even me, who keeps plugging meditation headspace and self help!
so, how are you planning to distract yourself? One thing I have noticed is that our health situations dont often mirror our worries...they can of course, but often the worry is much worse than the outcome...so do please hold on to thatxxx
thinkng of you and please keep us posted💝
Hello skinny friends
Sorry I have been quiet I have not felt too well and I have switched off for a while although i have tried to keep up with your posts on different threads.
Stresshead I do hope your itching has stopped and sorry to hear about your new suspicious patch. I am sorry I didn't send you a pm I am always concerned about you lets hope the medical team do help to sort your problems out.
I went for my Denosumab jab this week and the nurse was concerned about my wbc's dropping and wanted me to give the hospital a ring if my breathing got worse and if I should start with dizzy spells.It is christmas on Sunday and no way do i want to be in the hospital anyway I see the onc in 2 weeks time. My MS is progressing a little so that doesn't help either, walking is getting worse but I keep trying not to let it win. I do have aides to keep me going.
Well although we will be at home most of the season we are at our son's at Wetherby on Christmas day so that is something to look forward to and we will join the others in France via the computer.
Love and best wishes to you all for a very Merry Christmas and all the best for the New Year.
Loads of love and ((((((((((((((hugs))))))))))))))
Hi Stresshead, sorry you are feeling stressed...actually you sound as if you are managing to cope rather well, with quite a few balls in the air.
re Headspace...I find his voice really calming...oh and the other thing which Always gets me off to sleep...is very deep breathing, whilst counting my breaths, This, I just picked up myself...it has Always worked!
good luck and do have a great chrismasxxx
Hi RRH and Moijan, thanks for getting back to me. I have got something to do with headspace on my phone but havent really used it. I do have some cd's which my psychologist gave me so i think i may have to dig those out. Seem to be distracted at the moment with the festivities so perhaps thats a good thing. Had my heart scan on Monday (they had a cancellation) but they didnt really say anything. My appointment on 28th is my regular 3 weekly affair. My onc wont be there but his registrar is very good. I think things will have to get moving quicker than mid jan so i am going to ask about more ECT and try and get the ball rolling.
TO ALL MY FRIENDS, SKINNY AND OTHERWISE, I HOPE YOU HAVE A LOVELY (not too windy!!) CHRISTMAS AND HERE'S TO FACING 2017 TOGETHER. xxxxxxxx
Hi redridinghood, stresshead and everyone....have a really good christmas...I spent about an hour in the
mri scanner today...goodness knows what they were doing?
stresshead..yes try not to worry too much if you can...Its really hard, I know. But it wont bring about a positive result, so try.
love and hugsxx
have you got 'Headspace'? Ive been using it lately and found it very calming....just the free set of tenxx
Thanks for getting back stresshead. I do check here every day and have wondered how you were doing. I am 'bones' as well and check the bones thread and have seen your posts there, so that has given me an idea of how you are. You mentioned an appointment on the 28th........I assume that is the heart scan as you said you won't see the onc until mid Jan. Whatever, I hope everything goes to plan, but the waiting for these appointments adds strain to the whole thing. But you sound to me to be coping so well......on the surface I know.......so just sink into Christmas. Your new plan will emerge in the New Year.
Take care, stresshead and try to immerse yourself in this coming Christmas weekend. And hold onto your hat! Storm Barbara is coming! I'm down south so it may not be too bad. But anyone further north could be blown away!
Merry Christmas to anyone reading..........everyone usually on this skin thread.......Moijan, dbno, Daisy and your little chap, Marirose of course........everyone.