hi All
Thank you for your posts and encouragements. I am trying to pick myself up again as have until now tried to be positive, hopeful and optimistic that things can work out. I am getting that back again thanks to reading how some of you are doing. I would love to hear from someone 5 years or so down the line as you mentioned but think with all the developments that are happening we should be able to hope for that.
I am finding the weekly paclitaxol quite tiring but is the added drugs that seem to have the worst side effects. I know there is a diet thread but I do think that juicing has helped me on chemo. I have also chosen to eat lots of veg and no dairy or meat. I think for us TNBC ladies exercise is important but is having the energy too. I am lucky as have the beautiful sea to walk alongside.
I have had tummy pains that turned out to be from the non steroidal painkillers so I hope yours will be nothing more that that Fairyqueen. Have any of you seen a complementary doctor as am thinking of seeing a couple. I think we are stuck with chemo (although not conviced but too scared to come off it ), but also think maybe there is more that can be done.
Hope you are enjoying the sun? I wait til later when cooler to go out to the beach as cannot tolerate the heat at momemt.
love jo ( hope 15)
hi everyone!
glad to see you all feeling ok- thanks ginger bud- that PM re your treatment experiences will be v helpful. Thank you for showing me how to live past this stage everyone by your posts- its still so early days into me second diag. but im feeling less lost. Chemo been HAAARRRRRDDDD. On Carbo and gemocitabine. getting better today i think, chemo makes you feel low as it makes me feel ‘ill’- but hoping to feel better as week goes on, grateful though i am for treatment. Though I keep looking at rash every 2 mins!! to see if its changing- still routing for you fairy queeen. . .
amber
xx
Hello everyone on TNS thread… Does that stand for Truly Noble Sisterhood?
I am having trouble tying up who is who and what is happening with everyone. I don’t know how you all do it. I shall have to draw myself a wall chart! But suffice it to say that I am here from time to time and thinking of you all.
Last weekend I felt that things couldn’t have been much worse as I was dumped by previously nice boyfriend of one year. I am now pleased it has happened now while I am strong enough to rebuild myself a bit and not later when I might be more vulnerable. So I guess he has done me a favour.
As I haven’t got to have scans or appointments for another month or two, I am enjoying living a bit and not paying too much attention to the bits of chest pain and breathlessness which are my only symptoms at present. But I am also rallying support from various quarters as I now feel specially alone without said boyfriend. Thankfully my niece and nephew are total knights in shining armour and keep an eye on me from a distance as they don’t live nearby. Friends and phone calls are great too.
Thanks everyone again for being there. And I promise I will try harder!
Amber I see we are posting at the same time! Such a noble sisterhood.
Hugz
Jo xx
hi jo… sorry to hear of your breakup but glad you have support its hard enough without added emotions you take care x
hi all well day 8 of chemo just coming through other side i hope.quick dash to loo this morn tmi think the new thrush tabs are not helping managed to eat a little today legs woobly achy ive 3 more to go woooo then hoping to plan xmas i no to early but i love xmas hoping 6 is my limit for now id like a break gd luck to everyone haveing chemo this week or scans pop back when up to it love to all old and new laura xx
Hugs to Jo - sorry about your break-up, but it sounds like it was for the best. Hope you have some lovely times this summer.
Sarah x
Hi All TNBC buddies!!
Sorry I have been ‘away’ - CR** last week. Chemo number 12 and it was PANTS! Really struggled physically and that dragged me down mentally. However, thinking clearer now and back to ‘normal’ - whatever that is!! I have been reading this thread and say a MASSIVE hi to you all. But not been able to post - as not really been able to sit up let alone type!
Tina - WOW you are a starrrrr! Wieght loss and dipping your big toe back into work. I really hope you enjoy it. The end of term is always a special time at school. I was not following the thread you mentioned (dont weven know which one it was) but I am sorry you got some strong comments. There are sometimes when peoples passions are forced on others - it is all very emotional. I am glad we are all friends here and support and respect each other. Thanks for coming back!
Jo - I am so sorry you are experiencing personal problems. On top of everything else. Hugs and friendship coming to you from me!!!
Sarah - Glad you have won the chicken war!!
Laura - The thought of Christmas! Lets hope you get the break you need to enjoy it. Having a focus is great.
Amber - Fingers , toes , legs and arms crossed that this works for you.
Hope - Hi!! The sea side sounds wonderful. I see a Homeopathic Dr regularly and am sure this is helping. He is also great to chat to. He sees things from a different perspective and helps me see the bigger picture.
Fairy queen - Good luck for Thursday and Tuesday. It is all very difficult but I have settled back into some sort of routine following secondary diagnosis and sure you will too.
Linda - Hi - How are you doing? Sorry if you have posted and I have missed it, but what is the treatment plan for you?? Been thinking of you lots as we were / are on the same treatment.
Hi to everyone else toooooooo!
As for me…
12 weekly chemos down and not sure how many more to go! This is odd -not having an end in sight! Just keep going… (Taxol / Avastin)But as everyone keeps telling me ‘at least you know it is working’ and for this I am very grateful but it is still hard! Someone asked me for a ‘list’ of the SEs the other day. I started at my feet and worked up - all very depressing!! I stopped half way up as she got the message! Every bit of me is getting ‘got’!! My nails are also sore and one is lifting off (sounds life a spaceship!!). My son gently kissed it yesterday - it was a very sweet moment. It was his birthday on Saturday - my baby 12 years old!! It is always a difficult day as his twin brother died as a 5 month old baby (sadly as a result of medical negligence) and so it is bitter / sweet day even though it is a number of years on now. My daughter is off to South Africa on Sunday on netball tour for three weeks - I am so excited for her and dreading it at the same time. It is a long time to be without a cuddle! So - she will be suprised when she opens up her suitcase to find ME INSIDE!!!
Hugs and smiles to all
Sadie Xx Xx
hi sadie thanks for your support so glad your chemo is doing the job
and i hope it does for a long time take care love rachel and love and hugs to all tn ladies xxx
Hi ladies
Sadie :)))) Great to have you back we’ve missed your lovely cheerful posts! Sorry to hear you are struggling with the se’s but you sound like you are doing brilliantly to me! Weekly chemo must be very intense. Hope your daughter has a brilliant time- wow what an experience! And happy belated birthday to your son too. Big hugs re his twin- it sadly seems that some people have much more than their fair share of difficult times xx
rachel- I have posted on the other thread. So sorry your having a crap time. Don’t give up hope xx
hi to everyone- Sarah, claire, laura, linda, jo, hope and Amber x
anyone heard from margaret, sandra, Kelly, nileema or debs lately? Do hope they are all ok as I haven’t seen a post for ages. Have sent a few pm’s to no avail…
I’m feeling ok, had a nice day in Manchester with claire yesterday. Feelin anxious (understatement) about meeting with my boss in school later today…yikes!! Really don’t want to go back but doing it for my hubby + little boy. Some wages will be nice but my motivation is my life insurance + other pension benefits. Need to get back in service to be eligable. Realistically I’m preparing myself for more treatment sooner rather than later so I’m nit even thinking about September. My recurrence side has been really sore lately + lots of strange itchy sensations so I’m naturally worried there. Nothing showed up on scan but I do worry that it’s a bit too superficial to show up. All feels very abnormal to me but onc won’t biopsy due to extensive rads damage.
Anyho, jyst wanted to say hello + update you all.
Speak soon
love tina xx
Dear Sadie
I am glad you enjoyed your sons birthday. For me a bitter sweet day was my boys 1st birthday in June as I was diagnosed 5 days later as he had heart surgery. I lost a son too and of course even as pain lessens we still never forget our love but they know that - I am sure of that 
You are doing well getting to 12 as I am struggling at 7 of these weekly paclitaxols. Hair all coming out and was told it wouldnt although everyone else says it does. Think Onc just wanted me to go on it and not dread it. Ive seen clinical shrinkage but not sure about inside ? How often are they scanning you ?
Am sorry last one was so horrid but seems that happens and then hopefully next one not too bad. I have also been told if works you can stay on and i think yuk but then again think if it can keep stable.
Does anyone else do juicing - Ive tried to 3-4 day through chemo and thin it helps ( may be psychological ) but do seem to get strenght from it.
Love to all of you
jo
Hope 15
Hi!!
Tina, lost of good luck for this afternoon. I hope they are aware you still need tlc!! Wokring with kids can be exhausting (I am a Speech and Langauage Therapist). Let us know how it goes! Xx
Hope - Thank you. I would witter on about life being unfair and us having had enough difficult times - but we know it does not work like that unfortunatley!! Hugs to you too. As you say, they are still with us, just in a different way.
They are scanning me once every three months. Sept is my next set. What about you?? I am DETERMINED to make it to the full 18 and then maybe a bit of a break. I think I thought weekly would be easier and less intense SE. But it is building up a bit. Maybe the next one will be less severe?? Starting to dread it already! Still 4 1/2 days to enjoy first!! I try and juice and would like to do more - but I really am so tired when I need it, that I dont manage to do it. Will go and do some NOW>>>>>>>>>>BYEEEEE!!! PS my hair came out 3 weeks into it! So, back to wigs and hats. It is growing a bit, but v patchy and not proper hair! Where do you live Hope?
Off to juice what ever I can find…watch out kitchen!!
Sadie Xx Xx
Hi ladies
How are you all? Hope you are enjoying the sunshine after all the rain this week!
Im hungover after a night out with friends last night. Drank far too much- wine, vodka, shots,etc- so Im paying the price today. Thanksfully hubby took dan out for the afternoon so I could go back to bed!
I survived my meeting with the boss. Only saw a few people thankfully but feel Ive crossed a major hurdle in just walking through the door! Im in this tues for a conference then back in properly next week…
Been having a mini sort out of my summer clothes and Im gona have an ebay blitz this week as I have lots that I cannot wear any more due to beeing mono-boobed with high scars 
There are several cases in the loft full of my clothes too so its my mission to work my way through them, ebaying the best stuff and taking the rest to the charity shop.
Speak soon
Love Tina xx
Hi Tina - Well done getting past the school gates!! Good luck for the next couple of weeks - maybe it is like riding a bike - you will not forget how to teach! A hangover - WOW!! A breeze after chemo brain I should think!! Hope it is going now!
Well Ive just waived my daughter (15) off th South Africa on Netball Tour!! The other side of the world!! 19 sleeps till she comes home - and counting. They will have an AMAZING time - but I will miss her! And to top it all - Ive had a lovely week and back to chemo tomorrow! So - clear the couch - Im coming in…
Love nd Hugs to all!!
Saide Xx Xx
Hi All
Ive had that sort out Tina and must admit was too much hassle to EBAY so the charity shop did well out of me as took lots of stuff there that I cannot wear as too low or loose. I am having a couple of favourite dresses altered though to make a bit less baggy and a bit higher over top then can wear them still 
Sadie - you are doing really well on the weekly treatment. I am due 8 tomorrow of 18 but full of cold again so not sure they will do. My 3 and 1 year old are germ factories bless them and I seem to always get twice from each. Am juicing still to keep up the immunity.
Worst se for me is tiredness, inability to be out in heat, and the neuralgia pain over head. I am having a scan next week which will be 3 months so think like you intending 3 monthly. I live south east in sunny eastbourne true to its name as v hot today and beach weather ( later for me when no sun . I love building sandcastles with my little one.
Well done Tina for going back into the workplace. I worked at the hospital but am not returning as did get ill health from the NHS.
love to you all
jo
hope15
Hi Jo / Hope (just realised you are called Jo - not Hope!! Sorry!!)
Very kind of your kids to keep giving you their colds!! Just what you need! Hope you manage to shake it off soon. I also take Vit C - which may help? (Lots of other stuff too - but just wondered about Vit C and colds!) I hope the ‘scanxiety’ is not too great! It is a worrying time and Im crossing everything for you! It is great to KNOW it is working when you are pitting your body through so much! Will they give you the results quickly? I hope so!
Had treatment 13 today! So will try and enjoy tomorrow before SE kick in Wednesday and it is getting sooooo hard. As you said - the tiredness, but it is not TIRED but an inability to do anything (even think) without a significant amount of effort. I am OK in the sun - and enjoy it. I have painfull feet and finger nails though and a rather upset tummy (yachchchch!). It is a balancing act. My next scans are Sept. So DETERMINED to keep goijng till then and do all 18 chemos before replanning!
Hugs to you all,
Sadie Xx Xx
Hi Sadie
|take aloe veroe juice for tummy - is still upset but think helps. Vegan diet affects too I’ve noticed. I get se the day of chemo and not too bad day 2/3 but think affects all differently and worst is the piriton which wipes me out for the day. Know what you mean about thinking - I used to be mrs organised and have all 4 kids here and there but now I am always forgetting appts etc and just laugh about it and try to remember that the calender is there to check each day !
You are doing so well as nearly there and only one cycle to go. I am neraly halfway so tell myself nearly there as too want to get all in if a good treatment.
love jo
Hope your daughter having a great time in SA.
can secondary ladies all say how you felt when first told that bc had progressed and could you tell me your situation at the moment with treatment you have had or having , i just forget who is at what stage and get mixed up lol thankyou love rachel xxx
Ref pain because of secondary tumour entwined in my brachial plexus, just under my right clavicle. Anyone else in pain when they drive their car but at no other time? I’m on Gabapentin/ Co Codemol mix, taking abut 17 tabs in one day. I garden, cook, sleep without pain, sit as a passenger even but a soon as I drive, wow the pain is unbearable. I have a loose seatbelt, tried sitting forward, consciously relax my shoulders, driving one handed, putting a small cushion under my armpit but nothing helps, despite having popped pills an hour before.
Just been told that I cant have radiotherapy due having had max dose in same area 10 years ago. All I have now is Aromisin to help starve the cells of oestrogen. Apparently the pain decreasing will be the indicator that the lump is reducing in size, but until then I am in agony and want to get out and about !
Hi fairyqueen it was a shock as saw onc he told me I was fine I’ve lung mets am on carboplatin / taxol num 4 next wk scan showed gd shrinkage so that’s gd where r u with treatment Laura
just started capecitabine, docataxol didnt work for me !so think that rules out taxanes , great about your shrinkage i hope i get news like that soon x