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July 2017

Member

Re: July 2017

Morning ladies.

Michelle, hoping you get the answers you want from genetics. I was told the same as Carole. Probably a genetic gene for cancer somewhere but there isn’t a test for it yet.
I’m going to have genetic/ dna testing on this biopsy so I’ll be curious to find out what comes from that. They can pin point drugs to match you cancer variants now with this test.

I hope you can figure a way to stop working now Carole. Your boss sounds like an ***. You have enough on your plate without work stress.

I can’t belive that at 44 I don’t think anyone will want to employ me now either. 😳
It’s a lot to take in. Other people don’t understand what an absolute machine I am and that I’ll be around for a long time yet. 😂
They just hear secondary cancer and think ‘oh, her number must be up’

Maybe I’ll have to go back to working for myself. I used to write newsletters and press releases for charities and small businesses. That could be an option.
I wish I didn’t have to worry about it, but unless we win the lottery anytime soon I’ll have to sort something out.
I hope your diep prep goes well Carole. Mine couldn’t of turned out any worse. Ha. 🙄

Apparently there are a handful of surgeons who will consider recon for secondary ladies if you’ve been stable for a long time. 🤞🤞🤞

Let me know how you get on Michelle.
Xxxx
Member

Re: July 2017

I don’t know much about benefits, never having had any.   I could look into it.  I really don’t like my job.  My boss is an uncaring git. I just struggle with the fatigue and aches and pains.  I don’t think there is anyway I could get another job with my health history (including other things that have been going on 5 years) and my age.  I couldn’t do anything physical like shop work now as I’m just not up to it and with chemo brain etc I doubt I could do another office job. Wish they hadn’t moved my pension age!

 

with my BRCA test it came back normal, but they said I probably do have a dodgy gene somewhere, with my family history, but they don’t have enough info yet to test. If your test does come back as dodgy gene at least you will be able to deal with it.  Knowledge is power. 

Member

Re: July 2017

Carole why don't you try and get some help maybe tax credits to bump up your hubby's pay or maybe you could get esa if you are struggling i the 20hours i was devastated about my job made me feel really inadequate as i loved the job i did as it was very rewarding and physically i could manage it, i had a previous neck injury back in 2005 which resulted in cervical fusion spinal surgery which of course gives me a lot if pain as rhe years have rolled on coupled with some post treatment stuff im just physically not up to a physical demanding job which is what the are offering!!! So for now im going to have to sit it out and wait for redundancy carole then look for something part time yes this cancer business has turned out to be bloody expensive!!
Thank you for the message im currently a bag if nerves missed a call from the genetics late afternoon when at shops going to call me tomorrow think my results are back 😨😨😨😨
Member

Re: July 2017

Hi MIshy and Angela 

I'm sort of enjoying the weather, but I am struggling a bit with the heat, especially when working.  Also my garden is brown and straw like as we’ve not seen rain for about 6 weeks. 

Ive just got my info pack through from East Grinstead for DIEP reconstruction and waiting for first appointment with surgeon. The whole thing terrifies me but I don’t want to be a uniboober forever so I’ve got to look at the options, not that there seems to be many. 

I am getting tired of the Letrozole aches and pains and weight is creeping on although my surgeon says I don’t have much belly fat for making a matching boob.  From my angle there looks plenty, 🤔

 

 I am also coming  to the realisation that maybe I should give up work.  I’m 60 in January and struggling with working 20 hours  a week and everything else.  Trouble is that I won’t get state pension until I’m 66 and not sure we can live on just my husband’s pay. You are right Angela, cancer does cost a fortune one way and another. 

 

Good luck with the liver biopsy Angela. 

Good luck with the genetics test Mishy.  My test came back as normal BRCA.

Member

Re: July 2017

Ah glad you enjoyed the baby sitting i know what you mean about it tiring you out but its worth it isn't it bet you will be glad to get wed out the way i never realised the receptors could change? Thst is really important in terms of you getting the right drugs the money situation isn't great and the prospect of being unemployed isn't ine i would have thought this time last yesr i would be in but health is def more of a priority for me now i definitely don't want the stress as you say, i def think it was probably a contributing factor for me i think greif for my dad has slowed my recovery significantly for me as i never dealt with it at the time needed to get head down and in with treatment i have had to engage in counselling because of it all, on a nervous edge tonight missed my call from genetics my results are back 😨😨😨
Good luck for wed xxxx
Member

Re: July 2017

Hi Michelle.
I’m doing well. Loving the sunshine. Grandson slept last night and had me up before 5am so slightly knackered but worth it. 😍
Liver biopsy Wednesday to see if the receptors have changed. Can’t wait to get it out of the way. Oncologist appointment Friday at 9am then me and hubby are driving to west Auckland to a spar for a couple of days. It’s nothing fancy, a cheapy really, we’ve been a good few times before and it’s just nice to get away.
Really hoping I can swim by the weekend 🤞

Sounds like you’re still having a nightmare with work. Nothing is ever straight forward is it.
I’d be off for as long as possible if I were you. The less stress we have to encounter the absolute better.
Hopefully you’ll be able to continue claiming the esa.

It costs a fortune cancer. Instead of me going back to work this year as planned it now seems hubby will have to keep supporting me indefinitely. He obviously doesn’t mind, but trying to live on one wage with all of the expenses that cancer brings is a nightmare. 😳
Hope everyone else is doing well. Xxx
Member

Re: July 2017

Angela hi how are you doing xx hope you are enjoying the lovely sunny weather we have had the rain is here but all good as long as the sun comes out again tomorrow 😂😂🌞🌞 having Ella cuddles today
Tatanya hope you are managing your new drugs and they are ok in terms of SE are you enjoying the lovely summer too, its been fab l am still in work limbo land unfortunately they can offer an alternative post so looks like redundancy is on cards my gp and counsellor at maggies who has been fab says i should just stay on sick leave till they offer it as its unfair on me to phase me into work to then have nothing at the end of it, i think they have known this longer than they let in as when i was at meeting may about return the told me to stay off longer as it was quite heavy due to shortage of staff i think they have been hoping the board would review it so unfortunately for me still no job thank god i was entitled to some esa as my savings have dwindled
Carole kimi how you doing x
Member

Re: July 2017

Oh that's good.  Hope your treatment goes well with little side effects xx

Member

Re: July 2017

P.s.
Carole, thanks so much for the name of that surgeon. I’ve been in touch with him via email and he’s given me the names of two top surgeons closer to me in the north who he thinks would be prepared to operate.

Xxx
Member

Re: July 2017

Thanks ladies. 😀😀😀
Your messages of support really do mean a lot to me. Xxx
Shi Community Champion
Community Champion

Re: July 2017

Ftf ❤️❤️❤️😘😘😘glad they have good treatment plan in place for you, it sounds like they’ve seen this before so know exactly what to smack it in the goodies with 🤸‍♂️🤸‍♂️🤸‍♂️🥊🥊🥊🥊🥊don’t forget you’ve a bag of 💣💣💣💣from us Bccf girlies too to help blast the blighter out of you darling 👭👭👭👭😘😘😘💕💕💕✨✨✨shi xx
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Re: July 2017

Angela

Im pleased they have an optimistic treatment plan for you.  Fingers crossed everything goes well.

 

 Hope you enjoyed lunch out. xx

Member

Re: July 2017

Im so pleased to hear that they can do that for you fingers crossed for your biopsies have a lovely day with the hubby Angela 💖
Member

Re: July 2017

Thanks for thinking of me Michelle.
So it seems there are around 7 small spots on my liver. So zoladex to shut down my ovaries as I’m still having heavy periods so bursting with oestrogen inspite of tamoxifen.
Then I’m starting on Ibrance and Palbociclib. Hopefully this will get me into remission (apparently there’s a very high chance)
Then hopefully surgery to remove anything else.
Liver biopsy soon to check the cancer hasn’t changed it’s receptors.
I was gutted to have to go back to the chemo ward for my injection this morning, but considering everything I’m feeling pretty positive I can tackle this.
Onwards and upwards.

I’m hoping everyone else is doing well. Hubby has the day off so we’re going to walk into town for some lunch in the sunshine. 🌞 x
Member

Re: July 2017

Angela 💖💖💖💖 for today xxx
Member

Re: July 2017

i Don’t blame you for not going back to work. I wouldn’t either. Enjoy your granddaughter instead. 😍
Well I managed to prep a dinner and I’ve been for a run already. It’s bloody ironic that I’ve never been fitter in my life as I am now. 🙄
As for the chicken, I read somewhere that chicken oestrogen is exactly the same as human. 😳
No idea how correct that is mind. It’s put me off though. We used to eat loads of it. Not sure if that would effect you with you being tn though.

Hope you have a lovely Sunday. Xxx
Member

Re: July 2017

Sorry bout the spelling not got me glasses on haha!! Now going in garden before it gets too hot!
Member

Re: July 2017

Hi Angela clad sxan went ok its a shame you have to wait till Friday im keeping everything crossed its another beautiful day glad you're doing something nice Im like you with meat now my kot are sick of chicken dinners i rarely eat red meat now still waiting fir my braca results and my mammo i figure mammo must be ik as i haven't heard anything but still hoping the braca isn't positive git my Grandaughter all next week as daughter back to work i was supposed to be too but was having a few problems getting back tgen found out when i was going that im being made redundant but nit till bloody Oct so i can't look for anything else kr i won't get my redundancy so my doc said to stay on sick leave as its not positive for me to go back on phased hours to have nothing at the end of it
Enjoy your day and good luck for Friday 💖💪
Member

Re: July 2017

Thanks Michelle.
Scan was fine. The contrast didn’t make me feel sick this time so that’s a bonus. Results not until Friday. Back in the waiting game.
Hope your results have came back negative. 👍
I’ve got the family coming for dinner today so going to enjoy this sunshine with the grandchildren. 🌞
Nut roast for me as I’m terrified of eating meat pumped with oestrogen. X
Member

Re: July 2017

Angela been thinking about you today hope everything wenr went well keeping everything crossed for you 💖👭💪
Member

Re: July 2017

Predicted text monster is back that was meant to say good not food and Shi not ashi 😨
Member

Re: July 2017

Food glad you enjoyed it a bit of Northern 🖕 its nit your fault Angela its the bloody little piece of 💩, once scan etc is done you can get things nire settled and I'll keep everything crossed for you and op and tabletss would be great 👍 love Ahis little goody bag!!!!! Keep posting we will keep your pecker up 💖
Member

Re: July 2017

Thanks for all of the wonderful words of support ladies. And thanks for the goody bag shi, I love it. 😀
Michelle it’s my fault I didn’t have an earlier scan. I was supposed to have one after chemo but the wait between scan and appointment was six weeks. I was too anxious with the long wait. My oncologist said they weren’t really concerned about the tiny things that showed up on my original ct so it was fine to cancel my appointment.
Clearly, I made a mistake with that one. 😳
New ct is Saturday teatime. Hoping to have more answers early next week.
I’m just desperate to find out how much there is and to get a plan together. Apparently it’s very unusual to be in only the liver so they’ll be checking for further spread. 😳
P.s. I enjoyed your rant. 😀
Shi Community Champion
Community Champion

Re: July 2017

Mr Sinatra 🙄🙄predictive text gremlins 💕💕✨✨Shi xx
Shi Community Champion
Community Champion

Re: July 2017

Ftf, 😘😘😘❤️❤️❤️ I’m sorry to hear your news, have you got yourself on the cbd oil? Worth trying if you’ve not taken it. I’ve Just gone and got you new goody bag 🔫🔫🔫💣💣💣💣🤺🤺🤺🤼‍♀️🤼‍♀️🤼‍♀️🤸‍♂️🤸‍♂️🤸‍♂️🤸‍♂️Hope you manage to escape chemo this time and keep 💪💪💪💪and 😁😁😁like I know you will, there are great strides being made and your onc sounds great. Carole great news about your sister ❤️❤️Tatyana the Greek weather followed you back, 🌞🌞🌞mishy, hair is doing a bit of a mia farrow circa when she married mr Sumatra, and it just blooming wonderful to have hair 👍👍👍💕💕💕✨✨✨Shi xx
Member

Re: July 2017

The ladies on here have shown true resilience which you have bucket loads of Caroles sister is also a fantastic example of treatment available Angela its sounds aas though your onc has a treatment plan for you and potential for other things im sorry for the late reply just picked up thread before and was just shocked excuse my previous rant i was just so angry at the disease its a sneaky piece of 💩 again Angela im her if you need a 💖💖💖💖💖💪💪💪💪💪👭👭👭👭👭👭👭
Tatanya lovely how are you doing i see you had a change of chemo and still your 💪 as ever my friend we are all here for ine another i know we don't always post but i will be popping on to check in on you all!!
Carole hope you are well too and kimi sending you all my best wishes ☺️💖
Member

Re: July 2017

Oh Angela hun its not bloody fair, im so sorry to hear your news im absolutely gutted that day we met at radiotherapy we were both buzzing about coming to the end of treatments if you hadn't been having tge diep would you have even had this scan? Im furious with our trust the lack if scans after initial op then completion of treatment is just rediculous it needs changing if you need to talk im here hun im always a pm away xxx
This pissing disease makes me so angry but as tge other ladies have said today the treatment is excellent and you are a tough cookie sending you 💖💖💖💖💖💪💪💪💪💪👭👭👭👭👭👭👭
Member

Re: July 2017

I might feel like I need counselling in the future but for now I’m okay.
I think it helps that I’ve decided this is not a death sentence and there will be something out there to put me into NED and keep me there.
There have been some really big break throughs this year with these new targeted therapies.
Oncologist hasn’t ruled out maybe immunotherapy in the future either.
My bc nurse says she has ladies 10 years on and doing great and they didn’t have access to as many drugs so I’m hopeful. 🤞
Member

Re: July 2017

Thanks tatyana. It’s good to hear you’re doing well on your chemos.
Yes, I rather not be going through this, but I’ll be okay. I can’t wait to start blasting the little b******

Apparently I may not need chemo as my oncologist is hoping to use one of these new cdk46 drugs.
Then hopefully surgery. 🤞
My next ct is booked for Saturday so hoping to have more answers next week. X
Member

Re: July 2017

Angela, I've just been catching up with this thread, so sorry to hear about your new diagnosis. I was diagnosed with secondaries in January, I've been on a couple of different chemos since then, and at least I can tell you they are a lot more doable than our old friend fec-t! Some SEs of course, but nothing unmanageable, mainly fatigue.
Are you getting some emotional support such as counseling? It's hard to adjust to the new reality but it can be done, but take all the help you can get. You are one strong lady, as we all know! Sending love and hugs.xxx
Member

Re: July 2017

Yes please Carole. I’ve sent you a pm
Member

Re: July 2017

Pm me if you want the name of her surgeon as he is world leading and one of a few who can cure st IV liver.
Member

Re: July 2017

Hey Carole.
Fantastic news about your sister. Thanks for sharing that. How brilliant. I do want to have surgery if possible. X
Member

Re: July 2017

Oh Angela so sorry to hear this.  But you are right, there are some very good drugs to help now. Also surgery. My sister had 15 tumours removed from her liver stage IV.  She is currently no evidence of cancer over 2 years on. 

You've got a great attitude and that helps a lot.  Stay positive hun xxx. Love and hugs,

Member

Re: July 2017

Morning ladies.
Had oncology appointment yesterday and the cancer has spread to at least my liver. Booked in for another ct to find out how much there is and whether it’s gone anywhere else.
Not the best news at 44. Apparently there are a few brand new drugs showing great promise and I’ll have access to these.
I’ve told my hubby I plan on being a medical marvel 😀
Im going to be around for a good while yet and while this news is devastating, I’m feeling quite positive that there will be treatments that work for me. I cope very well with SE’s and I’m good at utilising mind over matter so at least I’ll cope well with any meds. 🙄 x
Shi Community Champion
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Re: July 2017

Mishy, some breaking news on any triple negative survivors out there thread from billierule, worth reading darling ❤️❤️❤️Ftf, great news brca clear 👍👍👍💕💕✨✨Shi xx
Member

Re: July 2017

Fab news about the braca Angela waiting for mine atm 💩 for results will keep you posted, keep that 💪 you had right through the treatment you were a tough cookie then and still are keeping everything crossed for you 💖
Member

Re: July 2017

Thanks for the positive vibes ladies. It means a lot. I’ll keep you informed.
At least my brca results were negative. So relieved as I was worried for my daughters. X
Shi Community Champion
Community Champion

Re: July 2017

Ftf and mishy ❤️❤️❤️Keep positive my 💪💪💪💪beautiful friends, mishy the waiting for the brca results is 😳😳😳but you will feel like you are in control of things no matter what the results are, it kind of puts you back in control if that makes sense. Ftf, were not having any more of that thank you, it’ll just be something caused by the chemo hammering you had, keep positive ❤️❤️❤️💕💕✨✨✨Shi xx
Member

Re: July 2017

Oh Angela this is like a roundabout we think its just about time to get off then off it gies again, i really hope its not cancer, and as you say lots of scares which have been just that so thinking positively is the best thing for you atm, i sincerely hope it is a scare and nothing else, if you need to talk i will be popping on x again good luck for Monday xx
Member

Re: July 2017

Hi Michelle.
Definitely one forward two back. Bloody nightmare. Apparently something on my liver looks like it could be cancer.
Most of us have had scares so thinking positively until I know otherwise.
I’m sure yours will be fine. I think you’d of heard by now if they found anything sinister.
I just got a phone call this afternoon with very little info apart from to say they’ve found something that needs investigation. Not even an appointment in place to discuss it yet.
On the fear train again. 🙄 x
Member

Re: July 2017

Hi Angela haven't got results yet im quite impatient by nature though so im thinking if ringing it will be 2 weeks Thursday so i suppose no news and all that!!!! Sorry to hear about the ct scan and diep, its like 2 steps forward then 3 back some of this isn't it good uck for Monday it bloody hurt on my sore swollen boob x
Member

Re: July 2017

Hi ladies.
Michelle, did you get your results? Assuming all is good 🤞
Mine is on Monday. Not looking forward to it. Apparently there’s something on my new ct scan that needs further investigation before I can go on the diep waiting list. 😳
I knew it wouldn’t be straight forward. Nothing is these days.
Hope everyone is doing well. Xxxx
Member

Re: July 2017

Hi Angela it was over in a flash but my sore boob really hurt 😨 anyway its done just waiting for the results and results for Braca test, in tge whole feeling alot better these days i hope your scan for diep goes well and you get your lovely new boob
I tell you something our bodies must be so resilient for the battering they took recovery is noticeably getting better each week 👍
Good luck for your mammo too Angela keeping everything x take care x 💖 to everyone x
Member

Re: July 2017

Morning Michelle.
How did the mamo go? Mine isn’t until the 25th now. I have a ct on Tuesday to check if I’m good to go onto the diep waiting list.
Got back from zante on the 7th. It was absolutely wonderful. Two weeks of bliss having nothing to worry about. I managed to put 7lbs on with all of the eating and drinking, but hey ho, I might get a bigger boob out of it. 😀
Lovely that your hair is growing back so well. I was rocking a pineapple look for a while where new hair was sprouting up at the top. I didn’t even realise I’d lost any until it started to grow back.

I hope everyone else is doing well. Tatyana, hoping those meds are still working as well for you.

Xxx
Member

Re: July 2017

Evening ladies hows everyone doing mammo time will be round about now for everyone mines tomorrow 😨
Tatanya lovely how are things with you im hoping you are doing ok 💖
Angela hope the holiday was good and you had some free time from the worry re the mammo mines tomorrow not going to lie im a bit nervous but suppose we all fet the nerves before one, anyway apart from thst things are good enjoying having lots of very thick hair its mostly brown again but there is till a white flash at the front 😨 the grey is only on the ends now strange 🤔 its curly slash wavy haven't cut it yet as i hace a style in mind and with the help of lush shop hair custard it styles quite well i use hair tie things too to tame the top which is shorter than side and back 😂
Lots of 💖💖💖💖 to you all keep staying 💪😚
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Re: July 2017

Mishy, I’ve pm’d you ❤️❤️❤️💕💕✨✨Shi xx
Shi Community Champion
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Re: July 2017

Hi tatyana is it this week you’ve got over to Greece again, have a beautiful time as I know you will beautiful lady 💕💕💕✨✨✨Shi xx
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Re: July 2017

Mishy, taking Ella to the seaside? What a great way to spend the day! Have a wonderful time. I was making sandcastles with our three-year old granddaughter a couple of weeks ago, so I know how much fun you're going to have.
Member

Re: July 2017

Carole thats fantastic news so pleased to hear that xxx Angela new boobs and a flat stomach you can do it your a 💪 cookie you too Carole sounds like a big op but it will be worth it you did chemo so im sure the op will be very doable to you both my boib is a lot smaller than the other even with the fluid build up and swelling 😨 Tatanya kimi hope you too enjoy this lovely sunshine at the weekend and whos watching the Royal Wedding I'll watch it on catch up taking Ella to the seaside 💖