Hello all you darling girls (and one chap),
It is so good to read all your posts and feel we are starting to ‘re-group’ and kick off again. Kay, Jayne, Jenny and anyone else I’ve forgotten - I am so sorry you’re all having such a rough time, and Kay, your description of the ‘slippery slope’ sensation is so graphic.
On the subject of whether to post when you’ve only got bad news: one of the hardest things I’ve found about the deaths of friends has been that they have seemed to back off or go very quiet, just at the point that they needed the most support. I SO wanted to be there and offer them love and support, and always imagined we would be there for each other, whoever’s time came first. I have felt quite hurt and saddened when I’ve found out it’s all over and I never had that opportunity, and they went through the worst days without the support of us on this site who understand so well.
Maybe I’m being naive about how lucid one can be when things get to such a serious stage. Maybe when it’s me I will just want to cling to my family and not talk to anyone else. We can’t know until it happens to us. But I would hate to think that anyone denied themselves the support they wanted because they were worrying about making others feel gloomy. So please please let us be your listening ear. Spill it all out. We want to do that for you, our friends who are struggling more than us at the moment.
with love
Jacquie xx
I am with you Jackie. xxx
Let it all out, otherwise what is this site for?? Julie
Hi all
I agree with what’s been said already. I have tended to read more than write over the past few, sad months. This site helped me so much with my secondary dx nearly 2 years ago and all the advice and support from some of the lovely ladies who are no longer here. It would be nice to remember them by passing on our support and advice for anyone else who needs it on this part of the forums, especially those of us who are not having such a good time as well as any newcomers. I’ll try to be more involved than I have been and here’s hoping to any of you needing treatment at the moment find out a new regime that works for you.
Nicky x
Hi all
I totally agree - let it all out.
I so agree with you Jenny that it has been such a long horrible cold winter with many sad losses. I have just felt like hibernating and am usually always out and about. But it is so good to see the days getting longer with thoughts of spring on the way. I am on my fifth session of carboplatin and so far it is working for me when nothing else did so well worth a try.
Hope you enjoyed sandwich Jayne and best wishes to you all.
Anne xx
I think this is the only place I can be totally honest about how I am feeling. With friends and family I have always been the life and soul of everything, the entertainer if you like, always upbeat and game for anything. My diagnosis has knocked the stuffing out of me and yet I am still expending valuable energy on putting on my ‘brave’ nothing wrong with me face - with everybody, even my BCC and Consultant. Am I completely mad???
Yes, I am feeling low today. I have chemo tomorrow and my husband and children are skiing in the Alps as I type!!! I am covered in horrible red lumps on my arms and legs - erythema nodosum for those unlucky enough like me to get an allergic reaction to drug/s, not sure which one - good job it’s winter or they would be painting a big black cross on our front door.
Sue xx
Hi Susie v and all,
I’ve also got lumps on my leg that itch, i’m told it’s sertraline the AD’s i’m on.And if that was’nt enough i’ve been as dizy as a bat
with vertigo every time i move my head left, right, up or down.Hope it all settles down before my op on 23 feb.Hope everone else is ok Lesleyxx
Hi Lesley
My lumps have come up since I have had Carboplatin/Gemcitabine combination chemo that started in mid November. Then I had Neulasta injections in December and then the lumps appeared after my 3rd chemo on 4th January so I am not quite sure what has caused them. They seem to go down a bit and then flare up again plus I get a fluid build up/swelling in my left foot , where the worst spots are, and it hurst to walk, like I have sprained my ankle/pulled the ligaments or something. Then it just disappears again and comes back a fortnight later or so. Really weird. Mine sometimes feel a bit itchy/prickly but I am resisting the temptation so far.
I just hope they disappear as my GP and Onc have both said, usually in about 6 weeks but that will probably be six weeks after I have finished the chemo. I hope yours disappear soon too.
It’s bad enough being flat chested with out being spotty too!
Love Sue xx
oh! as Debs used to say - these treatments make us so attractive! Hope the spots etc die down soon -
Having done nothing but poo (sorry) for last 36 hours I now have a very sore bum and chronic and continous wind with a distended stomach - windows all open in bedroom in case i use up all the oxygen - makes me feel very lovable on what my great-nephew has called ‘love you day’ - but , thanks - sandwich stayed down - biggest challenge is having to eat before xeolda - everything tastes of cardboard!
Sue I agree I am very positive and dismissive about my condition to those around me so here is where i express worries and fears - it feels very wierd at times
Jacqui - i worry about how lucid you remain and whether or not you are in enough control - i worry when someone goes quiet - yet i did myself
Julie and Kay - thanks so much for your pm’s - and your support and encouragement…hope all is enjoying this sunday as much as they can …Jayne xxx
Oh how blooming rotten Jayne…do keep up your liquids though so you don’t get dehydrated. Love…xx
Hi Jayne, as someone who also suffers periodically with the same symptoms…have you any tablets to help you? I take loperimide (spelling??)/ (immodium)…2 tablets after first visit to the loo, then one every time thereafter…it realy works for me. I know just how you feel. I get exhausted and it always happen in the evening or at bedtime…then I am scared to fall asleep incase I have an accident…and I have I am embarrased to say…Is it your treatment that is causing it? I hope you keep topping up with water/liquids because we don’t want to have you become dehydrated too…(If you know all this already I am sorry). I also have spasmondal tablets which I can take if the spasms become uncomfortable even if there are no running to the loo. Anyway if you need to know more get back to me before I go off on holiday on Tuesday…Am off on the ferry from Scotland to Zeebruger then driving across France to Visist my daughter and celebrate my 60th birthday…but I may have told you all about that already…oh the mind is definately going!!!.Love to all, Love Val X
Thanks Val and Belinda - yes immodium at hand and I hope things are abating - think it is the treatment - daughter currently cooking chinese meal for chinese new year so might be tempted to have a go at that - sounds a bit risky to me! am drinking plenty of water!!! feel i could launch my own hot air balloon!!! Have a wonderful trip Val - sounds lovely … and happy birthday,jayne x
Hi Jayne
I had off ‘the scale’ problems at Christmas whilst on a strong antibiotic and found that using Aqueous Cream on tissue paper to clean up with was very soothing on a sore rear end.
I used up a whole giant tub of it when I had my radiotherapy after primary treatment and then bought another for myself and it has proved to be endlessy useful for all sorts of things.
I hope things ease up for you soon. I have honestly felt as distressed about my bowel problems when on chemo as anything else. It is truly horrible!
Val, Have a great holliday - I hope I can make it to 2020 to celebrate my 60th - well done you, many congratulations!!!
Love Sue xx
HI everyone I know I am a latecomer but I am certain that none of you will mind me joining in. I joined this forum I think in August last year just after I was diagnosed with BC and bone mets. I have been reluctant to join in sometimes because it seemed like everybody knew each other. I often read threads but dont put in print what I think. I will make more of an effort from now on. Just lately it seems to me these forums are showing more humour and I have always had such a positive response when I have joined in. Have already made some great cyber buddies and hope for many more.
Happy Birthday Val. You have helped a great deal with bringing me out of the anxiety I was feeling so have a great time on your hols.
Sue - I am off tomorrow to Boots for a big tub of acqueouds cream although I actually have exactly the opposite problem. But have always believed in ‘be prepared’ you can tell i was a girl guide many moons ago.
Regards to all. love Julie xx
Hi Julie, Good to see you posting again. Keep in touch. Lovely to hear from you. XX
Hiyah Julie
Yes, you must keep posting. I felt like that too, like everybody knew each other and I didn’t post when I was first diagnosed and treated I just read things and picked up lots of useful tips. But, this time around I felt very differently. The first time I didn’t feel like I belonged because I thought I was different, that this was all a big mistake and despite all the treatment and evidence to the contrary still believed that until my secondary diagnosis in October last year.
Spookily, however, I suddenly decided in July that I would have a huge party as a combination of ‘I am better’ and ‘I am 50’ rather than wait until December when everybody is ‘partied’ out! How glad I am that I did as I spent most of December in hospital!
But, getting back to the point, I realise that I am not different, the reality is grim and being able to talk to other people in a similar situation is so helpful - I have great friends and family but they don’t know what it is really like and all of you do!
THANK YOU.
Love sue xx
Now where did I leave those chocolates!!!
What are all these posts got to do with “remission” (the original point of the thread!?) The poor original poster must be left wondering why her questions have been so severely side tracked-especially as it was her first post!
Hi ElaineD, Maybe we all read the thread because most of us on here are “in remission”…??? To everyone else…do you want to move over to a new thread or will we just keep on here?..I am off on holiday in an hour or so, so may not see your replies. If you want to start a new thread please PM me so I will know where you all are. But personally I think staying on here is fine…or is that just me? Love to everyone, love Val
Personally I can’t see a problem here, just my opinion. I thought quite a few of us had commented on remission and living years with mets. I’m sure the BCC moderators would have moved part of the thread if they thought it needed to be moved. Hello 2beans I hope you are well…x
Do you remember all those years ago when we used to say things like ‘I couldn’t do without my dishwasher/microwave/tumbledryer’ - well for me now it’s my bidet! On he occasions I’ve had the awful painful bum problem there is nothing better.
So for all of you who don’t have one - I suggest you access a grant and have one installed - I do not know what I would have done without mine. I think all women with secondaries should have an automatic entitlement, because one day, one of the chemo’s will get you in the bum - that is for sure.
I’m so glad so many of you are back posting - could I ask you to look at the Hot topics - Asda thread. Your comments on the ‘tickled pink’ decision - whatever they may be - would be most welcome. Thanks
hi all - threads always go their own way - dont know why i am posting here as remission isnt sadly a word used for me BUT thanks for the adivice on aqueous cream Sue - i have a huge tub of it and now know what to do with it …!!! Julie - we all dont know each other until we post! Val - have a lovely holiday and Celeste have never used a bidet but maybe need to start!!! jayne