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421

Hi Kate

met you at the secondary taskforce evening , you are a very brave and strong women and I have the greatest respect for you. Even at such a difficult time you still make me laugh… peeing in the bath indeed!!
Are you being treated at the South. General . Was Dr. Last by any chance your Onc? If so you are right he is absolutely brilliant. I had not good experience my onc
where I lived before and when I saw Dr Last I felt human again he is such a laugh - brilliant bedside manners. I saw him on wed everyone is very sad that he is going to Oz
a hard act to follow

Be thinking of you Kate

Love
Angela x

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Hey GG

Id love to be coming on here later with some good news for a change here still hoping with fingers crossed hey!

Ive been knkced for 6 all week with a bloody flu thing i never get anything like this an bang feel like crap.

I had my bone scan yesterday was being nosey at monitor again and can see the spread in the back, sternum was looking same but you never know and couldnt see owt on my leg.

Also had CT scan which was also fun due to me having coughing fits during both this and the bone scan im shicked they got it done…oh the doctor has to put the neddle thingy in again for the CT scan and guess what no gloves and i bleed all over him again! I give up moaning the nurse said that the doctors were all prats and wouldnt be told i had to agree.whats the point of everyone else doing their bit to clean hands etc if the docs are doing stuff like that??

Anyway Hopefully hear back to day will keep you posted.

Love to all, let me know if we’re meeting next week and where im easy

ooo got appointment with back specialist next tues so will find out when op is…dont want op but got to :frowning:

Kate hun i know i asked but i forgot when will you know if you’re elig for trial at mars?? and yes people saying the same thing would help think thats the annoying bit for me too hun. Fingers and legs and everything crossed hey xxx

lynnxx

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Angela - yes - it was Dr Last I saw and am at SGH. He is very good and I’m sure he will do his upmost to get hold of Steve Johnson asap to see if |'m eligible for tykerb. Someone else thought I might not be cos on steroids but I can come off them as it was to help with my breathing and taking low dose anyway. At least, I might get my normal face back then!!! Having a total mental block which person you are - think I’m still reeling from yesterday - what were you wearing? Definately, having a more dippy day than usual even by my standards!!

Lynn and Debs - just got to wait till onc can get hold of steve Johnson but was told to phone my onc’s secretary on tuesday if heard nothing. Willl probably go back next thursday to get exact size of spread. They refuse to operate on that lymph node as high chance in others as well and they are reluctant to do rads as high risk of lymphoedema. No - hubby Ididn’t come with me. I think has moved from anger to denial now or avoidance. He knew mum was here and just said he couldn’t take more time off work as he has been off sick a lot in last 2 weeks plus meetings so not been with his team and felt he needed to be there. think it was better with mum as didn’t get full results anyway

Definately getting more movement and feling back in fingers but still couldn’t make my friend’s birthday card last night. Had to get hubby to do it. Friend coming round to help me finish photo albums - so frustrating.

Just having a dwon day but going to firework party tomorrow which is always fun and the food delicious and can get plenty of booze!!! Sunday - now off on big yacht to Isle of Wight for the day which is something we’ve been trying to do since May so excited about that.

Going to do a- z book of important facts as scared hubby will overdose kids if I don’t write down certain things. At least, I feel happier that son got tooth taken out with his grnadma so made me feel not so bad I won’t be here in future for rest of his orthodontic care.

Lynn - hope you hear something definate on tuesday about your op - at least then you will know what you are dealing with.

When are we meeting?
kate - off to bed now as mum still here so can make most of that time having a rest.

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Kate I was the tall one short blond hair and was wearing brown trousers and brownish top. Sat next to Jenny

Hope you are getting some rest

Angela x

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Kate am so sorry hon, glad u have ur mum their with u tho…glad hubby seems to be feeling better if if still rubbish with appts and stuff. Hope ui get to see who it is u need to see, cant believe they are all giving differing opinions…Any chance u can stay in touch with onc even if is going to oz???
Lynn sounds like i have what u have altho am back at work with no voice!!!
Didnt realise we were meant to be meeting next week, am off on hols next weekend for 10 days so let me know and will c what can do but not sure as working between now and then
Kate big yacth sounds great unless u dont have sea legs - like me!!! Enjoy it, hope the weather holds out for u. R the kids and hubby going too???
Debs hope u get the blood test done, could always try the water works if all else fails!
Sammy hope ur not too busy and little pickle recovered from when he was ill
Claire where r u???
xxxxxxxxxxxxxxx

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Well I’ve been ill too, so sorry for being away, and hubby and I are having problems so not in the bes spirit- but pickle ok, had a reaction to something he ate and had to take him to the docs with no appointment, you wouldnt believe the attitude of the receptionist considering it was nhs direct who told me to go. I pointed out it would look bad if I called an ambulance to a surgery cos they wouldnt tell the doc I was there! Of course the doc was sbsolutley fine with seeing H. Grrrrr

Well girls Kate I 'm glad you have some improvment, hope you can get hubby talking to something other than morris minors… lynne will be thinking of you on tues, I had simular with contrast for mri doc too impatient to wait for gloves that the nurse was fetching!! do they think they are super human and germs dont touch them? Trace be careful with viral stuff, that is how my sis ended up with M.E, so take it easy, you cant go to work if you are ill esp cos of where you work!!!

off to watch x factor xxsam

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oh kate forgot to say good luck for thurs and were is the marsden? let me know if it is in london i can meet u 4 a coffee if u come up ( i mean i will come and have coffee with you whilst you wait in stuffy rooms of course) and lynne have you got someone to go with you tuesday?

xxsam

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have texted claire, asked if she had won the lottery and cleared off without inviting us lot, she has been busy and is OK.

got my bloods done at the local path lab, luckily know the receptionist as it was closed so she went and found me a good one, only 3 attempts, so hopefully all systems go for recon. but she had to enter me as dropping it of from GP’s as she shouldn’t have done it, how effing stupid is hospital politics. Also got next appt for onc April 08 so she has put me back to 6 monthly rather than she 3 monthly that her reg put me back down for. sounds good to me.

have ben chilling out reading dina rabinovitch book, ordered it 2 days before I heard she died, I have read it in 3 days. I am still in pj’s at 15.12hrs as am hungover, had friends round last night for curry, sparklers and fireworks, quite a lot of wine and silly singing on PS2 popstar until about 3ish this morning. i feel like sH*t, i never learn.

sons football team had their first win yesterday so hands were stinging from all the clapping, bless their little faces, they keep drawing and 3 of them finally got goals against a team who hadn’t been beaten until they met us.So quite a good weekend from this part of the country,

Kate everything crossed you get good news of tykerb, cant believe you are sailing the day after booze and fireworks, my OKH has never met my onc, I think he is relieved when my appts clash with his work.

Dr Lynn when do get the official report on those bone scans and your op date, I think kate mentioned next weekend for meet up as she was trying to fit around Trace’s shifts, but gypsy Trace is off travelling again (not jealous at all). Did you ever get back to that horrible neighbour over the parking incident or look into badge,

I am pretty much fine for all sundays in november for meet up, so will fall in with everyone else.

Sammy good for you to sort that receptionist out, hope little H is better, your have to tell us re your OH when we next meet.

of to get another cup of coffee.
Love Debs
XXXXXXX

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Hi
had fantastic day mainly cruising over to the Isle of Wight as no wind and made little headway when sailing with sails. Lovely lunch and tnow home. Can’t believe it is this warm in november. We did go on the multimillion yacht so abslutely lovely. Daughter came with us but boys stayed with grandparents to play on PS2 or watch sport or just play.
Firework party last night so quite shattered now and have manic friends coming round tomorrow to declutter house!! - scary thought!!
Had upset last night when youngest wouldn’t settle as he thought I’d died so took a lot of reassurng and really upset me.
I think I only suggested next sunday as that seemed when most people free but not sure if people are or not- Perhaps we should text each other to see availaibility as we are not accessing this forum everyday? I’ll try later on but just waiting for sons and hubby to return and need to organise eldest son’s maths homework and youngest one’s spellings - oh joy of joys.
Then later (hopefully this evening if not tomorrow morning) I’m going on a rant on the secondary taskforce thread so probably be in moderation after that!!!
Text you soon
Kate

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Lynn - just read your post on secondaries but have no experience of that so have replied here rather than block your other thread. Sorry to hear about your op. Not really got any recent experience of back ops but can think of other people who have had various spine ops recently for other probs and I know it is a long haul and that you do have to either lie down or stand up but not sit for quite a while and that most people do have to have a back brace for a few months after and no driving for quite a while - you are going to have get over your fear of public transport unless of course all your clan can ferry you everywhere!!
Any idea of date of op yet and will we will meet up before. Sorry still not texted people.
Must go as keyboard batteries are critical and I won’t be able to post in a mo.
Kate

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Hey

Well lungs and liver still clear, but got an enlarged lymph node near heart or the aorta or something like that they said its not enough to put me on chemo and they cant biopsy it…nurses could it be down to the horrible cold I had or is it more than likely my little b of a friend tottering somewhere else??

Back-still no date for op im having the whole disc removed and a mental cage plus bone graph from my pelvis and screws to hold altogether! Fun! Ive asked to have it done at stanmore cause theyre leading hospital on this, got to have another ct scan on back and seeing back man next tues again.

BC nurse was really good she sat down and had a natter to me about everything which i think i needed, ive been reading the secondaries board abit lately and im getting scared with the whole convo about being er+ but not responding the meds is worse than being triple neg convos :frowning: been really getting me down and upsetting me that im wizzing through meds at the moment plus i dont want my back sliced open and bits taken out and stuff…but ill stop moaning.

Im at work so will try and get text out to everyone

Love lynn

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Bloody hell Lynn sounds worse than a chastity belt, how on earth are you going to cope with that?? When I was at school one of my best mates had a back op on a curved spine and she had about 6 weeks off school for op and recovery, the rest of us were jealous (niave 13 year olds), when she came back to school she had to wear a big ugly plastic vest that was stuck with loads of velcro for another couple of months, not very pretty but they may come in different colours now a bit like plaster casts and with a bit of shape. and if you have to wear one we can all write our names and rude comments all over it. Good news on lungs and liver and lets hope that lymph node is enlarged due to being sick lately.

I was having a nose around the threads the other night and came across that ER+ one, thought at first it would be an interesting read but it startled me somewhat so god knows how you felt.

Well I had to go for my routine smear today and it was with a new practice nurse, so had to go through medical history and then the dreaded scales, well she informed me, you have gained 6 kilos from last smear and are 8 kilos above ideal weight, yeah like my tight waistbands and my struggle to loose weight haven’t gone unnoticed. smiled sweelty but my mind was saying so effing what. However the problems I had below have now reversed big time it was the easist smear I have ever had.

Took kids to firework display last night and had a really good time, then they really played me up this morning so are now grounded for the week except for clubs we have paid up front, they have become quite argumentitve little sods of late so level headed OKH had a word and dished out the punishment.

well off to make dinner

Love to you all, if Trace cant do this weekend can we meet the one after or 2 weeks after that so that mine and claires OKH’s aren’t working and we dont ned to organise sitters.

Debs
XXXXXXX

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lynn - have replied on secondary thread about your results etc. Sorry to hear of the enormity of op etc - see thread.
Everyone else - what are we up to? Am free this weekend but not next saturday and could only make late afternoon on 18th. Can do 25th as hubby working on 24th but might be able to find childcare. Is this ever going to work out or are we going to have to meet in little groups. We need a video conference to sort this out!!
Can someone take responsibility - Debs you seem the most organised at present - I’m so tired I can’t think of more than one thing at once and at present it’s on getting proper results from ct scan and waiting to hear from marsden -can’t cope with organising anything. Someone tell where and when and I’ll see if I can make it.
I fell down the stairs yesterday as well so now have a right sore bum cheek (brilliant 10cm square bruise but I’m sure none of you want to see my white, flabby arse) and a sore big left toe - yep it’s going manky again - I’m not in a fit state to organise anything!!!
Sorry - very tired - spent afternoon listening to 7 yr olds reading when should have been asleep and stilll recovering from yesterday when I threw out 4 black bags of university stuff/school governor stuff - feels unreal to be doing this but can’t leave it to others to do. I did have help from 2 friends who also cooked me soup and did all the heavy lifting etc. Also been doing memory photo album today so in negative mood all round.
Will have early night and hopefully be better mood tomorrow - at least have got my pay sorted out - had a flurry of emails from managers and HR so now all OK. Hr/payroll cock up as usual!!!
Love Kate

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Hello Ladies

Lynne

My dad had partial removal of a vertabae. He had to take it very easy for a while and was very sore but was in so much pain before hand that he always says it wasnt too bad. I know you are doing the right thing going to a specialised place. All sounds scary but we will be there for you darling.

The whole what is better/worse thing regarding er+ etc can end up tying us in knots- I have noticed different ideas come up about it every now and again and personally it can drive you nuts trying to fish out the where’s and whys of it all.

I’m glad you had a good chat to the bcn. You have a lot going on with this unfriendly visitor. Dont we wish we could tell it to **** off.

Just went off to see a very little baby. Everyone is pregnant or having babies, and now H is nearly 2 people are strarting to ask me when I’m going to have my next one… then I start talking about stats and I can live with my prognosis(dont have much choice thro) and its a different thing to bring another little person into the equation. MMnnnnn. Dont like hubby much at the mo so dont have to worry about it at the moment!!!

By the way I dont want to be an artist anymore, want to be a train driver.

xxsam

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Oh Sammy If you ever could/did/want another one they might just fight and row all the time like my two at the moment. its driving me up the bloody wall, I really felt quite tempted to bang their heads together this morning, although daughter has told me its illegal to smack or threaten children, I told her its also illegal to annoy mummy’s especially when they are poorly. Can you make Sunday 18th for get toegther, then we can big chat re hubby and change of dream job. I thought it was little boys who wanted to be train drivers are you reading thomas the tank engine books to little H.

Reading is central again and cheaper train fare for me, although Kate let us know if you are OK to travel and you Lynn with your back, if not we can change venues. And from your post are you going into school to do reading with your low scores, be careful, escpecially with seven year olds, I’ve done the mum who helps the last 2 school years and some of the kids are full of bugs, I decided this September to take a step back unless they were really desperate, and guess what they weren’t, so a year off.

Have been out tonight, although my 2 are officially grounded daughter had already been lined up to sing with the school choir at local charity event, Children for Children, I did let her go as all money was going to 3 very worthwhile causes (1 was Oxfords children hospice) plus we had bought the tickets, it was really lovely 8 local primary schools were involved tonight and all the rest of the town and villages are involved over the next 2 nights.

Kate I have read some of your recent posts but please try and take it easy, falling down the stairs is not good for anyone, but at same time can see why you are doing it, hubbys are not very good at clearouts or safekeeps, and will admit if I was further on then I would be doing the same, Although have started in away, first was the venture photos. One of my really close friends lost her mum very unexpectedly 9 yrs ago, she went to bed with a back ache on boxing night and never woke up, she had a heart attack, my mates dad in a fit of anger threw everything even the chtristmas tree with all the decorations they had bought and built up over years, he just unplugged it and threw it to the bin, it really hit home to her a couple of months later what he had done. personally If hubby still angry then it may be best to leave some memories with your friends, he will come round, they have to eventually, if anything like mine, he may be frightened that if he shows he can cope you might relax.

Lynn hope my reply earlier wasn’t flippant, I know back ops are serious just trying to lighten the load.

Love you all loads, Debs
XXXXXXX

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Hey guys

Ok first things first, lynnie got ur text but havent had a chance to reply. Sounds huge sweetie and very scary but will all be here. Stanmore not a million miles away from me so can visit whenever…take it one step at a time so u dont let it overwhelm u. At the mo u r still taking in all that has to be done. The next step is the date, then u just need to take it from their…i no its easier said than done but if u think about the whole lot it kinda starts to panic u.

As for all the other sites etc…er+ and stuff, im amazed any of u ever read them, i no i dont…as far as im concerned u have to move on and get on with life, and if there is an article in the paper or on the news of course ill watch or read, but as for driving myself crazy with drugs and treatments and differences in cancers im just not that interested anymore, have learn to live with it rather than in fear of it…Obviously if it ever came back then i would start looking again, but if im honest iv never really looked at any of those sites…why drive urself nuts trying to find answers when the top oncs dont even no the answers. Its a waste of energy that could be better used elsewhere…

Hope the nodule is just cos uv been poorly, how do u find out if they cant biopsy??

Kate sounds like uv been overdoing it again…please take care and rest.

Sammy what has hubby done??? Train driver sounds great - we could get our own personal one and u could drive us all up and down the country in search of the perfect pub/dinner/bottle of wine…

Cant do this weekend or one after as am away but if u guys meet thats fine, i no im the awkward one! If u sort another date while ur all together let me no sooner rather than later so i can do something about getting it off.

Ok girlies, have fun and take care.xxxx

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quick ones cause im more likely to have death by boss cause we’re mega busy than death by anything else…

Next weekend abso fine by me i can get train down to reading so i can drink let me know.

will reply to everyones news when i get a min!

Better mood today love lots to all hopefully see everyone next weekend and Trace we;re doing a night out before im getting bloody anything sliced open!

lynn x

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Hey lynne its good to be busy!! Kate thay sounds heart breaking for you xxxxxxxxxxx

I cant say wot Hubby has done on t’internet :wink: and not sure I will come down next weekend as have xmas fair on the sunday

btw have wanted to be a train driver for years - and odd fantasy maybe but seriously looking into it now.

xxsam

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hi girls,

sorry i’m the worst friend ever and like debs said its not like me! i dont know whats wrong but i get so so tired at the moment and could fall asleep at any time of the day. work doesnt help as absolutley run ragged and they are pushing us all so much with the 18 week waiting lists, makes me laugh how they shove all these extra lists but dont get anymore staff to deal with it. labour ward has been ram packed nearly every day and i’m sure no one actually has a normal delivery anymore as i have not stopped doing c sections all day and its been like that since friday, even had 2 theatres running at quarter past seven this morning with emergencys and muggins ere did’nt even have chance to put my lunch in the fridge before they drag me in there, i dont start work til half past and was wanting my coffee, so not a happy bunny!!! i just get peeved off with it all as some people do nothing and pretend they know nothing and as i show that i’m competent i just keep getting given more to do!
Had a big row with one of the surgeons the other day and told him he was being rude and i was not here to be spoken to in that manner and he carried on, so i left theatre and told him he could get someone else! dont know about you guys but i dont feel i deserve to take any sh*t from anyone after all i’ve had to do. Sorry dont mean to ramble on about work!

Well been busy too, had a weekend away in Blackpool at half term as not had that week off, rushed back on the sunday as i thought kids had school and it turned out after i’d sent them that school was closed!! Bad Mummy! Stayed with my cousin in her new house, but had to sleep on mattress on the floor and back totally knew it too. Lynn, apart from your current back problem do you get problems with your back from the reconstruction? i’m in agony sometimes.

And my baby was 14 last week!!! do you realise that there is a possibilty that i could actually become a grandmother at the age of 32!!! thank god neither of my boys have girlfriends and are not remotely interested in girls.

My Grandad died last week too and got the funeral this fri, hate funerals and this is going to be a burial too as they are putting him in with nan so thats going to be even worse. Another thinkg with work, they were only going to try and make me make up the hours i’ll be taking off for the funeral!! Cheek!!

Been trying to book flights to Oz next year to meet up with family, also a dream holiday but its much more expensive than i anticipated, especially as we will be going in their winter! just going to keep looking and hope we get something after xmas, if not we will save up for an extra year.

Finding it really hard to keep up with all you guys, you busy lot. i read the posts whenever i can but i never get time to get online and easily loose the plot.

Kate, i still have’nt even uploaded your photos yet, hoping to get time over the weekend then i can send them to all of you.

Lynn, good news on the results. think the enlarged lymph node is probably from being poorly, then do tend to get inflammed when your poorly, dont know if i’d want people taking biopsies near my aorta! i agree with Tracey, deal with what your being told, dont look for other things. even tho i’m a nurse i never looked up or researched anything, i just put my trust in the doctors and just got on with things. i’m a great believer that whatever happens in this life happens for a reason and you have no control over it. (what’ll be will be)

Are we meeting in the 18th then in Reading? i’m easy with that. cant do the following week as mine and debs hubs are working but can do after that. then its getting close to xmas and everyone has hangovers on sundays!! Having a virgin vie party at mine on 19th if anyone fancies it.

Ere Sammy, you dont want to be a train driver, be a cleaner on the train, apparently they earn 25k a yr!!! those 3 years at uni were pretty pointless!!! hope your ok mate and remember if you need a chat or moan about RH then shout, been there remember!

Trace, hows you now after your op?? are you happy with the results? have you signed up for next years moonwalk? i’m doing the half moon as the full moon was full up apparently!

Debs, have’nt forgot you! we were gonna pop in on the way back home from balckpool but traffic was so bad that it took us 5 hours to get back. dont forget we need a night out at some point, and we need to organise a weekend break but we could discuss all that when we all next get together. Oh and by the way, as the kids get older it doesnt get any easier believe me, the bigger they get the mouther they get too!

Should have genetic results in the next week or so, cant remember if i told you BRACA 1 was clear so now testing for BRACA 2, unfortunatly as a mother of two sons, do not want it to be BRACA 2 as thats the gene where men get BC! i will be very surprised tho if i dont have a gene as a huge coincidence that my mum had BC at 44 and nan died at 56 of BC. worried too that if dont have gene that they wont do a prothelatic mastectomy on the left or whip my ovaries out!

anyhows better go, back aching badly sat at this desk and nice warm bath calling me! sorry if i’ve forgotten anything, i always have my mobile with me so text me if i need to know anything or whatever!! (so disorganised, think they took out that part of my brain as well as my boob!!)

Baths calling, love to all and please try and all do 18th, we coulf all do with meeting up
Clairexxxxxxxx

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Well, I’ll be there but not till about 1pmish as spending saturday night away from children and with 2 childless couples so want to make the most of that time and not getting up too early!!!
Think it will be claire, debsy and lynn and of course me!!! Definately could do witha get together - it’s not the same with non bc friends even if we never talk about bc - it’s good to know you are there if I want to.
Going to onc’s tomorrow to get full ct results and then going to a ‘farewell to a clinic’ party for free lunch. Amazing what the NHS will spend their money on!!! Can’t order new pens but they can throw a big party!
Claire - I don’t think it matters who you work for - some people will always ‘look’ busy and you get the conscientious ones like us whp gat their good natures abused.
If you get he photos done for 18th that will be fine - so no pressure then!!! Wanted to put my cards in an album tonight but evening seems to have disapperaed and now eating my dinner.
Saw hospice nurse today which has made me feel I’ve moved on a stage which I think is helathy emotionally. - just got to keep going physically now.
See you on 18th
Kate