Lyn,
am so so sorry to hear about ur gramps. Think u made the right decision about the funeral you have enough pressure. Glad you have plenty of support for your appointment thursday - god theyre gonna think theyre getting lynched…let us no how it goes and i agree a meet up would be good, but am limited because of my foot and dont think tubes and stuff with crutches are really an option as have noticed the more i use them the more the arm that had the lymphs removed is aching (also looks a bit swollwn but could just be paranoid) and dont want to risk lymphodema . My friend G is even coming all the way to london to get me to go to edinburgh!!! Am turning into such a woos!
Take care. xxxxx
Trace hope you realise it was a joke about the work-shy thing- said it cos i know you are the opoosite 
Lynn good to hear from you, cant blame you for wanted to hide darling. I have been thinking about you lots and wanted to say don’t feel you have to say anything positive to us lot- you have every right to fell hacked off with the c stuff and glad the girls are fighting over you
I 'm sorry about your grandad. I think you did the right thing too, you have to put yourself first now.
Kate glad the brain scan looks good
and the eye thing - I have been a good girl and booked in at the eye clinic- its so easy to get an appt for eyes they dont take any chances which is good, i wasn’t referred cos the consultant said it would take 2-3 months to get better, so I am going now as it dosn’t seem to be improving much.
Had my 6 month check , saw the lovely Mr R, all well, spoke to him about having more babies and am going to see an onc next week to go thro stats. But Mr r says as a triple neg I am thro the high risk, and said that knowing prognosis wont alter it, it is about me being able to live with it… and the consquences for my family as no-one knows what will happen… he seems to think it would be a shame if I let the cancer stop me from having another child whici I agree with, but it is another thing to go ahead… S dosnt seem that keen to have another so it all seems in the balance anyway.
Still how lucky am I to be even considering it.
We must think about meeting up soon ladies
Lynn will be thinking off on thurs
xxsam
Afternoon Ladies
Sorry to hear about your grandad Lynn, also think it was probably the wiser decision not to go to funeral, they all know you loved him and he loved you and thats whats important.
Glad to hear your strong network of chick mates, still the fit brit, let us know when your ready as you know we will be thinking of you. oh and something else re taxotere, you will have to start wearing dark nail varnish, it worked for me, my nails went crap but didn’t fall off.
Sammy glad you got eye appt, and think its wonderful that they are not dismissing the idea of you having another baby.
Trace try and rest your foot in scotland and no more accidents, my okh finishes working damned weekends soon, so will be easier for me to meet for get together.
Kate think the brain scan will be fine, sounds like it is, they wouldn’t normally make comment unless very sure thats its a good scan.
Must go hungry kids, love Debs
XXXXXXX
Have had a really bad day today and as slept so much of it, can’t sleep now but at least the pain has gone and I’ve eaten something.
Seem to be having the same trouble I’ve had with all chemos - constipation and then really bad runs for 24 - 48 hrs. This time though it felt as if someone had punched me in the stomach and I just wanted to lie flat on my tum but can’t cos of my long line, or lymphoedema arm and get acid reflux badly when flat. How stupid - have all this problem getting food down but the acid pops straight back up. Think I want a bed that is raised at the head end - like baby cribs!!!
Well now I’m tired so back to bed again.
Got to take litle un to hospital wed afternoon - just wish I could spend 1 week away from the place!
Kate
Kate hope you had a better day
well the eye is still scarred so just told to wait anther 2 months - so notheing sinister just a bit boring as makes me tired and computer screens are hard work
Lynn hope you are ok and had the posse with you today
stay well guys
xxsam
Lynn was thinking of you today xxxxxxxxxxxxxxx
Kate as per Sam hope you had a better day,
debs XXXXXXX
Hey ladies
I start chemo the 18th April- 3 lots of Tax to start with- im so not looking forward to it! Ive been so down and everyone si trying to perk me up but it just isnt happening they wont me to get into the right frame of mind?? I just laughed what th F my response im gonna loose another year of normality on top of recovering from this back op thats killing me at mo, been reading side effects of Tax sounds f in awful! I was ok on FEC my body was strong and i only got upset when my hair fell out, which is upsetting me again i hate loosing my hair! It destroys me.
Im being fitted with some line under the skin too- not sure how they do that but a lass was saying on another thread she had a really bad experience with that too- i just want to curl up and and i would say die but thats the last thing i want to happen or i wouldnt be putting myself through all this hey? I cant ignore as i did before which is causing problems with my eating im suppose to building up strength for chemo and im being sick because im so bloody anxious about the whole thing. I want to wake up from this nightmare 3 solid years of pain i really dont know how much more i can take laides i really dont i just feel like my life is over i like to be out doing stuff and i cant get do that cause i so down and sore from op stepping out the door takes so much energy.
Anyway the docs giving me sleeping tablets need them as i am waking every hour in tears so hopefully they can help a little we will see.
I wana be positive…maybe shouldnt read the Tax thread in treatment its scared me lots.
My love to you all, Kate I hope you feeling better sweety…im sure you’re utterly feedup too my love to you.
Lynnxx
Lynn, dont read some of the bloody threads, Me Sammy and Kate have done it, yes its a strong one, but its the same as everything in life and on this site, some want to write an essay on every little niggle while others grit their teeth and get on with it. another example so I dont upset, man flu.
As for positive (b******s), yes try and be as strong physically and mentally as possible to face the chemo and some threads are reporting Tax as having good results, but thats it for me, how on earth can having BC be positive, I personally think its ducking sh*te. every aspect of it.
At least they are not starting you immed and giving you more recovery time post op, are you using cold cap again, I used it on taxotere and hair did thin but never wore wig, scarf or hat, and did you enquire nuelesta jab, really harp on about your WBC after such major surgery, you only have to inject the once 24hrs after chemo, it’s an expensive jab (much dearer than my fridge that had to store it) I did it myself straight into tummy and yes it makes you ache a little but you are already on painkillers anyway and like I said after chemo sessions 6,7,8, I was at 2 x gigs and busy chaperoning at my daughters dance show + son had all day football tournament and presentation night. I know I am one of the grit the teeth and get on with it sort but I promise its do-able, honestly, its not sickly like Fec just more knackering and achey.
Remember Exeter and the talk of the rainbow, not skittles or wine appreciation, it will help, I did it during chemo and before recon and yes did end up on iron tabs for 6 weeks but recovery and result went really well and I impressed all, super foods, wraps or pittas with humous, spinach, red peppers and red onion.
Cant really comment too much on the curl up and *** (refuse to type that word) as not in your position although will own up to struggling and finding myself in some very dark periods when I did wonder if treatment was worth it escecially after meeting my Onc and getting full path report. The fact I am here and NED 27months is quite good really, is it the Tax ???
Would you like us to all meet up again before you start chemo, if so shout, especially while Trace off sick. I would travel extra early to London to help either of you.
Love you all, but Lynn took preference tonight.
Debs XXXXXXX (still 7 seven kisses for each original GG member)
Lynn - I did have a rough time on tax but others who had neulasta or GSCF injections didn’t. As debs said really push for it as you said you’re still recovering from major surgery so your body needs all the help it can get. I couldn’t face the cold cap and if i get to be able to recycle chemos come April then I will be losing hair again and this really upsets me too. The first time was bad enough and the second time really upset me but now to think about the 3rd time of being bald and likely to die bald is something I don’t want to contemplate but would still rather be bald than dead.
I’ve got a long line in my chest wall - is that what they are suggesting or a PICC line in your arm or a buried portacath in your chest or arm. The first time I had a long line done it was done by someone who had never had done it before it and never asked my permission!! It wasn’t a good experience but once the consultant took over it was fine. The second time, the consultant did it and it was in within 5 mins and no pain whatsoever and still is fine.
I can see sleeping tablets are a good idea but if you are getting that upset in the day shouldn’t the Gp be giving you something to make you less anxious - lorazepam/diazepam.
Not sure if it is good when others try to cheer us up - sometimes I think it is good to wallow in self pity and others should be symapthetic to that need and not try to be over ‘jolly’. They are not dealing with the pain, feeling crap etc so just moan away to us. Please do ring, txt us. I’m not working at the moment and am usually around apart from hospital appointments. Please speak to any of us - we do know a bit of what you are going through. i know you hate the idea of counselling but perhaps there is someone like the bcn you can offload to.
Just got back from Monkey World - will blog that later and the trials of trying to book a short break to the isle of wight!!
Hope everyone else is OK.
kate x
Hey girlies
Lyn as others have said glad you have a date to start chemo altho i completely understand about how u feel having to go back on it, and totally totally agree with debs try not to read some of that stuff on the other threads. I used to sit there and read it all and it done my head in. I think in moderation it is ok, but believe these threads can get dangerously addictive as youre looking for answers. You have enough to deal with without absorbing others sadness and stresses and remember what happens to one person doesnt have to happen to you…
I understand where Kate is coming from with the jollyness, although i dont entirely agree as too much wallowing can put you in an even darker place, one day at a time and all that…
Not sure if i said i had neulasta for the wbc but did help and i didnt get the side effects the others had with aching etc…so maybe you wont either
Sammy good news about the baby stuff
Had my onc appt and all clear for another 3 months, have to have a dexa scan tomo tho (bone mineral density) as they believe the fracture i have may be due to osteoporosis, will also be left with arthritis as fracture goes through the joint…
Friend at work in bad way, only diagnosed few months ago and all treatment has been stopped as chemo not working…just dont know what to say to him…
Also stayed up north longer than planned as very difficult to leave G, he wouldnt let me come home. His mum isnt good either, she had a routine hysterectomy and found a tumor the size of a melon which has spread to lungs and brain stem. Already got to a size where it is pressing on vital nerves and lost use of right arm and feeling in right leg. They have started chemo but the whole family is in bits and no that she doesnt have long…am finding it very hard to take in and also very hard to see G in that state. I no how it feels to loose a parent and to have cancer and the thought of what he is about to go through breaks my heart.
I no everyone wants to meet up but really dont feel up to it at the moment if im honest, you guys all have each other and at the moment G and his mum have noone, just dont think i have the strength to be there for everyone. Am heading north again in april, and bless him he has bought me a suprise flight to the isle of barra (the smallest island in the outer hebrides) as he knows how much i have always wanted to go…its a tiny 10 seater plane and lands on the beech according to the tides as island only 7 miles round!!! He is coming too and as he is terrified of flying i think its a lovely thing he has done! Apparantly he even invited si but he didnt want to go!!!
Take care girlies and hope u all had a good weekend. x
Trace - only you know what is best for you and as you say G has no-one but you but you need to look after yourself as well. I’m so sorry that G’s mum is so poorly and keeps getting worse news. It will be hard on you as well to see her and G and his family suffering so much.
I suppose osteoporosis would make sense - you do seem to have had a run of injuries and I don’t know what zoladex and tamoxifen do to bone density but I imagine it would be damaging to bones.
Kate
Blimey Trace, bone scan would make sense as you have been accident prone or I was beginning to think secretly hitting the bottle, I thought Tamoxifen was kind to bones, swear I had been told this and read it on this site. will have to start googling some info although not too much. (pot kettle black)
and travelling again, cold but still exciting and exotic, the wild life and whiskies will be fantastic, it will do G good to get away for little break and you especially with work mate too, whats up with Si, cant beleive he turned it down.
I had my 3 month recon appt today, dr and cons very pleased with my progress and scars healing (must be the vit E Trace recomended), even allowed back to gymn, but gently does it, was going to tell tale on crap 2 year checkup but they broached the subject, so told them lack of checking and how he ordered recon to be mammo, PS not impressed and thanked me for being on the ball, so I got very big check up all over today and having next op to even out and do nipple in 3/4 months once all swelling will have settled, also got choice of local or general and went for local, hopefully might get me in sooner and I wont be paroniod what I say in recovery, (I must be totally soppy or very foul mouthed as they always laugh and ask me if I remember and then refuse to elaborate).
Claire where are you, I know you are around as getting the e.mails,
Any of you others wants a get together
Debs XXXXXXX
Trace some info from cancer backup
Is it true that tamoxifen can protect against heart disease? There is some evidence suggesting that while you are taking tamoxifen it can lower the level of fat (lipids) in your blood (high levels of fat contribute to heart disease). It is also thought that tamoxifen may help to prevent bone loss and so may reduce the risk of osteoporosis (thinning of the bone) in some women.
I didn’t bother to read up on anything else, just wanted to know I wasn’t imagining things.
xxxx
girls i’m whacked as have had a very heavy few days working but wanted to say hi and will post in next few days.
xxsam
Hey girls. Kate and Debs thanks. Didnt know about the tamoxifen as wasnt told, but do no that zoladex decreases bone density pretty rapidly especially in younger women due to the onset of premature menopause, so who knows…will have the results in a week or so hopefully, so will be able to see if i am just generally clumsy or if there is more to it!!!
Am really looking forward to little trip but G panicking already about the flight and beech landing…There are 2 peaks on the island and 4 good beeches so we plan to climb both and walk every beech - all in 24 hours!!! (oh, and fit in some surfing wind permitting!!!)
Am feeling a bit like a cancer hotline - just goes to show there isnt enough support out there for people…
Good news about ur recon debs and follow up surg, am sure local much better for u too rather than another hefty anaesthetic, i asked for my reduction under local but got laughed at!!!
Kate any more news on those scans???
Lyn, clare and sammy hi…
Trace. x
Hey Trace,
My terrible blunt Onc is so frightenly correct on all her info on side effects etc and is very much against zoladez or ovary removal unless the TAMX not working, I still have to proove her wrong on my life expectancy, but thats another story. Her endless lists of irreversal side effects are so clear now all she needs is a good bed side manner then she will be one hell of a Onc.
Have just e.mailed Claire, how are the rest of you doing?
Love you all Debs XXXXXXX
Trace, what an unbelivable time you are having. I sugest getting a second opoin, your onc has always seemed to verge on the cautious. Have a great trip, sounds wonderful. Be careful of becoming cancer hot line, give out bcc number. I put it in my phone cos i got fed up of ofering advice on things I didnt feel an expert on
hope everyone else is ok esp lynn and kate. How you guys doing?
Have just got into a huge show in june, as normal have NO stock so will be making like crazy, trying to concentrate on more commercial stuff and not get side tracked into mad necklaces, but tgought of making some extra chunky bracelets cos thats on trend a bit- well as far on trend as my work will ever go!!
take care girls
xxsam
Just saying hello to you all, might have to text too as we are going quiet.
I have just booked Paris for my birthday (I am excited) but having trouble with the moulin rouge online reservations so have e.mailed them, wanted to get it all booked today as me and girlfriends met up last night and finalised all the details. Our flights and hotel cost £157 each not bad (a lot cheaper than a party) and hotel is right near the moulin rouge so red light district here we come.
Hope you are having a good weekend, its Peeing it down here.
Debs XXXXXXX
Just popped in to say hello.
have now booked to go away to Isle of Wight at beginning of April holidays hopeful . They are supposed to be putting the 2 caravans next to each other. Hope they do or it will be a nightmare. Realised as well, it didn’t mention anything about a telly or heating!!!
My lymphoedema has spread round my back now and so none of my bras fit properly and is a real nuisance. I really didn’t intend to buy more bras but think I will have to. Had to take daughter to be fitted for her first proper bra - she’s 11 next month - seems so unfair that they grow up so quickly.
My ankles are still less swollen than they were so feel quite sure my heart won’t be any worse than last time but still haven’t got date for echo and it’s now 3 weeks since my brain scan and no letter arrived yet so hope it’s a case of no news is good news.
Husband and twin son are running the Sport Relief mile at lunchtime. It is pouring down now and the forecast looks as if it will still be raining when they are running - poor things.
Have 2 extra children for all of today ie they got here at 8am and not going home till about 730pm. Luckily, mum is staying today to help with cooking dinner and will go home this evening.
I find it so hard having to rely on my mum who is over 70 to do so much for me and tends to make me grumpy as I get so frustrated that I can’t do it.
When are we meeting up again?
Sundays are easier as free all of April. Saturdays could do 29th march and 19th April only.
We got woken up at 330am by a very drunk man who lives about 8 doors down. He was bashing our door with his walking stick but OH not quick enough to get hold of him. Have looked at front door and looks OK but haven’t examined the cars yet. He is well over 60 so strange time for him to be out that time of the night. OH says he is going to have words with him - I think this man is so odd, I would rather leave it alone.
Maybe we ought to email or text if the others aren’t posting.
Hope the rest of you are Ok.
Trace - thinking of you and G and his mum. When do you get the DEXA scn and results?
Kate
Went to see the locum this morning as my GP full up. She was lovely but refused to take my blood to see if I was anaemic so have had to go up to the hospital for a blood test and sent home and now awaiting a phone call to see what my blood test shows and see if I need a blood transfusion or iron. What a waste of a morning!!! She thinks I get this restless leg thing due to anaemia but thought the onc should sort it out.
Now going back to sleep again and hope I hear the phone ring - I seem to sleep through the phone and my alarm sometimes which is rather scary!!
Just so fed up with being so energyless and scared the onc will see this as a good enough reason to stop all treatment. Still not got letter from echo but feel sure it’s not my heart.
Really need to be looked after at present. My friend is going to try to organise a lunch rota as I’m not eating much but not losing much weight as I think I use such little calories in the day!!
Hope you are all faring better
kate