Hi you two,
Have you noticed there’s a younger women’s forum in Cardiff in January (you have to be under 45 so we all qualify). Its the 23/24 Jan and BCC pay for your accomodation etc. Have a look at the post. Any chance you two could make it?
ostrich these forums are only for cancer patients. that is what i find difficult as im trying to get my head around the thought of double mastectomy and hysterectomy to prevent the damn thing a lot of these doors are closed on me…xxxx
Oh Lainey, that seems terrible, to exclude you because you don’t have breast cancer but might. Are you sure?
Moderator, is it true that someone having propylatic mastectomies due to a 85% risk of BC can’t attend a forum as they are only for people diagnosed with BC?
Thanks Jo, x
Hi Girls,
The forum sounds a great idea but to be honest its only a few days before we fly out to Lanzarote and I hope to get back to work just the week before.
With the Euro exchange rate being so rubbish we will be struggling to get enough spends for our holiday!
It would be great to have met up!
I phoned my Boss today to say I am still signed off and ended up crying on the phone! Luckily she is a friend and is very understanding.
How are you Ostrich,not suffering too much I hope.
Lainey,its so hard for you (what was the answer re the forum?) ((((((((((((((((hugs)))))))))))))))))))))))
Love to all
Dot
xx
hi dot it’s only for ladies with breast cancer, i find that very very difficult that im due to go in to hospital in 8 weeks to undergo a double mastectomy, have had a hysterectomy and will carry the risk around always then have to help my kids if they decide on testing as they have a 50/50 chance of faulty gene and every door seems shut in my face. when i wake up from surgery i will be in amngst other ladies who have breasts off either due to cancer or prevemtative but im not allowed. honestly dot it terrifies me to think my risk is upto 85% of BC and an increadsed risk of skin cancer and kidney cancer but am not allowed the help that would benefit me.0 sorry to rant but i feel so lonely in all of this rubbish xx
Big hugs to Lainey
((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((()))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
I do feel for you so much ,as I have said before,I think your journey is even harder than ours and yet there is not the same level of support.
Feel free to rant on here,we will listen and give big hugs!
Love
Dot
x
thanks dot its a shame others dont feel my journey is worse perhaps then i would be given more support. i know you’s ladies are there for me and to be honest that helps a great deal. i just feel at times i need to go this alone. all the help and support kicks in if i was diagnosed with cancer but i have to take steps to prevent it. no wonder i keep saying sorry when im having a bad day as others make me feel that im stressing over nothing. thanks dot xxxxxxxxx
huge hugs
(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
Stay strong,Lainey
Dot
x
hi ladies i hope you’s are all okay today. i lay awake most of last night thinking things over in my head and i have decided i have had enough. perhaps i should allow fate to decide wether i get cancer or not. because i cant do it anymore. im sorry if that sounds selfish as their are other ladies out there who dont have a choice and that upsets me as just now im watching loved ones fight cancer and i know they would have loved the chance of a fope warning but i cant do it. it’s all too much. going to cancel my appt for tomorrow and let whatever will be to be.
dot thanks for your kind words. lots of love lainey xxxx
Lainey,I don’t know what to say but please don’t be hasty.You need to talk this over with an expert,so maybe keep that appt for tomorrow and talk to them then and let them know how you are feeling.Or make a new appt for the New Year so you can put it behind you till after Christmas.I can only begin to understand how you feel at the moment and what a momentous decision you have to make.Is there some sort of support group for women like you with a genetic risk,where you could meet or chat to someone in the same boat? Maybe you could start a thread under the “family history and genetics” thread to see if someone in the same boat as you wants to chat or can offer support.You are always welcome here of course,Ostrich and I (and Jenny) will always be here for you and grateful for all the support you have given us.
I wish I had some magic words but you are in my thoughts and I wish you all the strength you need to get through this,
Loads of love n hugs,
Dot
xxx
Hi Ladies,
Just logged on.
Lainey, ((((((((((((((())))))))))))))))))))))), Dot is right in that you should at least talk to someone tomorrow or in the New Year. Its taken a long time and a lot of bravery to make the decision to have the op so please take time to decide if you don’t want it anymore.
I can’t begin to understand only in that I will always have it in my mind whether my cancer will come back however fortunately due to the treatment my risks of it coming back are only about 10% whereas you face a 85% of getting it. I suppose (and this is all off the top of my head) with regular scans etc you might catch it early but how often would they check you? How would you know how aggressive any cancer you might get would be? Chemo sucks and I would rather not be going through what I am now. That said, surgery sucks and I would rather not be in the state I am now too. Its such a hard choice for you to make. We (Dot, Jenny and me) had no real choice and that makes it easier I think. Everytime along the way when I was offered choices in my treatment (recon, chemo etc) I hated having to make a choice - I just wanted someone to tell me what I had to do.
The moderator did come back to me re the younger women’s forum and sadly you were right. However she did say that they a telephone support group for women who have had risk reducing surgery due to an increased risk. (To register for the Telephone Support Group, please contact our helpline on 0808 800 6000). Have you spoken to them, perhaps speaking to someone else who has made such a monumental decision might help as might Dot’s suggestion as I am sure I have seen lots of women on here who have had risk reducing surgery (though you’ve probably done all this).
I want to send you so much love and hugs right now. Please go tomorrow. You are probably, understandably very very scared and reacting to the fact that its tomorrow, but you can use it to talk, the operation is still a way off.
xxxxxx ((((((((((((((((((()))))))))))))))))))) xxxxxxxxxxx
Will post again in a bit about what I have been up to and as a general catch up but want to get this to you asap, xxxxxx
Hi again Ladies,
How are you feeling now Lainey? xxx
Dot, its a shame about the Forum. I probably wont go tho thinking about it. I have my week’s phyiso starting on the 12th Jan followed by kimo on the 20th that I probably wont be up for it.
I have emptied my emotional bucket all over my floor the last 48 hours or so that my eyes hurt - partly kimo but partly sobbing like a baby. After feeling dreadful on Monday with the cold I was weepy anyway and getting all my ducks out of kilter (obssessing about how much my back wound smelt and being told by hubby its in my head) I called to get the results of my swab yesterday to be told I have 2 bugs growing in my back and had to pick up a prescription for a course of 2 anti-biotics (which means I can’t touch a drop until Xmas Eve) so I am now back to taking as many tablets as I was last week (4 x 4 per day).
It was just too much for me, I was overly emotional yesterday on and off, up and down all day and after I got home from picking up my meds I lost the plot. Whilst having the bugs identified and treated will no doubt improve healing and smell (and I told my hubby I was right!) after having kimo last Tuesday, cold from Sunday and now an infection (thankfully my temp is stable at 37) I had had enough of it all.
I feel like sh*t and have done for over a week now, I can’t drink until Xmas eve and am hoping and praying I have enough white blood cells to fight this infection without ending up in the hospital just before xmas and then I have to go and have chemo again on the 30th!
I so want to turn my clock back or forwards, I don’t want to be right now!
Anyway, brave face is back on (although still liable to burst into tears at the drop of a feather) and plodding on.
xxx
(((((((((((((((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
Ostrich,my emotional bucket has been overflowing too! I think its made worse by it being Christmas.My psychologist says it a difficult time as its natural to reflect on the past year and as it has been so s**t we feel very sad.
I am off to my dept Christmas tea party shortly ,lets hope I don’t start bubbling! LOL!
My new nipple has started to peel! It looks like it has had sunburn so I will need to phone and see what they say.I do like having a nipple so will most likely have a permanent one done.The only thing is it needs to be in a different place depending whether or not I have a bra on! And now I have one permanently “on alert” and one that varies so same problem as before but the other way around!
If you have bugs that will be making you feel poorly and down as your poor body will be fighten the wee blighters.
I know some anti-biotics do say no alcohol but many don’t so do check.Not that I am suggesting you get p*ssed but a wee glass may not do any harm.
Sending you hugs and strength too,its a sh*t time of year to deal with all that kimo chucks at you.
Lainey,I hope you don’t feel we are bullying you ,we want you to come to the right decision for you.The main thing to remember is that you are in charge and can withdraw from the surgery at anytime,no-one will force you.Think about it this way ,that you have the upper hand as you are in control and can change your mind even at the very last minute.Yes even if it means you running out of the theatre with your gown flapping open! LOL! Why not delay tomorrows appt till the New Year,try to forget about it and then consider your options again.
I wish I could give you a real hug,you are a very special person who has been dealt a bad hand re BC risk and deserve the strength to get through this.
Please let us know how you are,
Love
Dot
xxx
hi ostrich and dot thanks for your words of support. i dont feel for a second that you’s are bullying me (far from it). i called to cancel appt and started crying to receptionist and she is arranging my BC nurse to call back. keeping my appt for tomorrow open. so im going to get a list together of concerns and see what happens.
ostrich i feel very sad for you at the moment as it’s one thing after another just now you must be really worn down with it all. but you are doing great coping the way you are. and you are entitled to cry you are going through so much. christmas is a very emotional time also so that doesnt help either. definately check out the antibiotics though and see if you can have a glass or 2. kimo must suck and BC must be horrid. im thankful that im not in that position.
my prob is im a big baby at times and get so scared. going to see what nurse says and try and sort out my head as op is supposed to be in 8 weeks
love to you all lainey xxxxxx
Hi Lainey,
Glad to hear you are still keeping an open mind, sounds like you are doing the right thing and hopefully your BCN can help. You’re not a big baby! You should have seen me yesterday howling and sobbing and bald to boot - thats more like a baby, LOL. xxxxxxxxxx
Dot, how odd to think that you need to move your nipple. Is that because there is no “droop” on that one when you take your bra off (compared to the other LOL!)? Is the nipple peeling in itself so to speak or peel off you? If its peeling off you perhaps you are just toooo hot for it, LOL!
I hope your xmas tea party goes well and you keep your bucket upright, xx
Unfortunately its a defo no on the vino as I checked with a nurse friend of mine and she said one of them it would be okay on but the other she always tells her patients not to touch a drop and says if I do I’ll end up in the hospital so much as I was so looking forward to a expensive bottle of red I have on the side tonight whilst hubby is away it will have to be horlicks for me. If it wasn’t for the fact that I was taking so many drugs my body would be on a detox!
morning ladies, how are you’s?
im a bit better today diane (bcn) called yesterday and i just told her everything i was worrying about and she asked if i would worry less about cancer if i didnt have surgery and to be honest i would live life with such high risks always being scared and always wondering if screening results are correct. she thinks im just running scared and said it can be difficult putting yourself up for such major surgery when im not ill. which is true. she reassured me everyone gets scared and that’s natural. so im going to go to hospital and after i see surgeon i have to go and see her. definately taking the kleenex. i feel a bit stronger today if that’s the right word. and it helps knowing tonight i have a babysitter so im going to go out and get soooooooooooooooooooooooo drunk. other thing is hrt wont be an option if i keep my breasts and this menopause is severe so thats a positive about op.
ostrich i needed to read what you said yesterday as it puts things into perspective. i would hate to have cancer and go through kimo. it must be awful. also my aunt is fighting BC just now and i know she is struggling. cancer must be nasty and you and other ladies are dealing with your treatment so well. of course u will have really bad tearful days however who wouldn’t. also you have a family and have to still be mum and wife and run a house while having treatment, a scar that doesnt want to heal and now a bug also. you are dealing with a huge amount.
you,dot and jenny have helped me so much as i know i can say how i feel without being judged and i dont feel so alone when i speak to you’s. i hope we can stay strong and together we will get through this.
lots of love and hugs to you’s all and thanks again xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Good luck today,Lainey
Hugs
Dot
xx
Hi Lainey,
Glad to hear you are feeling stronger, good luck for today, let out all the emotion you need and then get pissed! You deserve it!
Love and hugs,
Kate xxxxxxxxxxx (((((((((((((((((()))))))))))))))))))) xxxxxxxxxxx
Hi Ladies,
Well my day didn’t go according to plan. Went to leave with Mum and dog and discovered she had a flat tyre on her car which must have happened as she came off the motorway to my house. We decided that we as girlies could change the tyre because I asked my husband to show me when I got my first car (13 years ago!). She only got the car last week on a trade in (its an 07 mitsubishi colt) and my OH has tutted away that she went and brought a car without the benefit of his manly wisdom but we figured out where the spare tyre was, found the jack, found the point to put the jack under the car and began to raise the car! Yeah, go girls.
A neighbour (male) came over and asked if we needed help and we said we were okay but any advice would be appreciated. He asked if we had loosened the wheel nuts prior to raising the car. Um, no. We then went to loosen the wheel nuts to discover that each wheel has one locking wheel nut on it exclusive to mum’s car (like a fingerprint and designed to stop someone stealing her wheels) and that we would need the locking wheel nut tool to undo it. Guess what? No locking wheel nut.
Male neighbour leaves as he has to go to work so me, mum and my 16 year old son and the dog turn the car inside out looking for the wheel nut because its not with the spare tyre etc. No show. We called the garage that she brought the car from and their helpful reply was - “Its bound to be there, we would have made sure before we gave you the car, you have to look hard (you could almost hear the ‘its because you is women and is stupid’ in his voice) and if its not there bring the car here and we’ll have to force it off and replace it.” When asked how we were supposed to bring the car to them with a completely flat tyre the general gist of his response was - “not my problem, too busy, not enough staff to send anyone to you, pay for a recovery truck”. When I challenged him on the fact that the locking wheel nut was NOT in the car and that they didn’t supply it and how on earth was my mum (62) supposed to know that she should have checked that it was with the car before she accepted it his reply was “I would have checked” as if to say "its cos you is women and stupid!
The upshot is that we ended up speaking to the manufacturer rather than the supplier and they have sent one of their recovery trucks to take the car plus mum and dog to one of their main dealers to try and sort it out but that mum is going to have to pay for it all and look to claim it back from the suppliers.
When I finally managed to speak to my OH on the phone and he shut up telling me where I should have been looking for the wheel nut (cos I is a woman and too stupid to have checked EVERYWHERE) he managed to say “Well if she’d taken me along when she was intending to buy the car I would have checked that the locking wheel nut was there and so would any man”.
Arrrgggghhhh! We were doing so well being women (one bald, one old) and had the bleeding nut been there in the first place we would have changed the tyre and celebrated the fact that we don’t need men, as it turns out all we have heard today are overtones and references to how badly it turned out cos we is women and stupid at that kind of thing!!!