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General chat

Barton
Member

Re: General chat

On a completely different note - am I weird, or has anyone else had the same thought - that the 3 "speech bubbles" at the start of the Forum, in the header, look like boobs with weirdly distorted nipples? Smiley Surprised Am I just strange? (Don't answer that, Carolyn!).

 

Hugs. Barton.x

Barton
Member

Re: General chat

It's just over 2years since I got the news! Still here! Feel so lucky. I hope to be here for many more years yet. And I hope the same for all of you!

 

Hugs. Barton.x

Carolyn52
Member

Re: General chat

Hiya
Its nearly a year since I had the devasting news of bone Mets ..didn't think I would c xmas , nephews wedding in April or grandchildren birthdays in May .but every day is special ...the saying .....stop and smell the roses comes to mind .
Hugs xx
bonariensis
Member

Re: General chat

Well it's exactly a year now since we got back from my niece's wedding and found an urgent appointment for a bone scan in the post. Bone irregularities had been picked up in a CT scan for something unrelated. It felt like an immediate death sentence but, one year on I'm still functioning normally except that my joints ache and I get more tired. So, after the initial shock, life goes on with a few ups and downs.

Carolyn52
Member

Re: General chat

Hello
Not sure if I'm allowed to post this but I have no financial gain I promise.
If any ladies get night sweats or hot flushes a site " houseofbath.co.uk" do a pack of three cooling scarfs which you can put on your neck, forehead or wherever ..they have gel crystals in them to stay cool for two days
Haven't seen them before .
Hugs xx
Carolyn52
Member

Re: General chat

Hello moijan
Welcome ..you will see loads of different threads here in our private little haven.
Please feel free to join us in books, arts and word games etc.
We love to have members ..the more the merrier
Hugs xxxc
Moijan
Member

Re: General chat

Hello friends. This is my first post on here. I had primary lob bc in 2001, mastec and recon (which went hard quite quickly and caused infection, was later removed.)waslucky to get on to the trial tamoxifen/letrozole after initial chemo, followed by Taxotere( my choice as most of axilliary nodes pos) was on letrozole till about 2010/11, when was told I could come off it. Mets to bone and liver found 2013. Then Cape for 2 yrs, re tried Letro( my request ) this January, cancer resistant, then Vinoralbine for 5 months, now just finished 1st cycle of Eribulin.....enjoying a week off.  - sorry about that, just thought in the interest of self disclosure - you might like to know, will not repeat it again!

 

i think this group is a great idea. Someone mentioned their difficulties reaching a bcn. I have contact with one at the Marsden, so, I hope the other lady managed to get in contact with one? Seems that the metastases stage patients have a dedicated sp bcn?,  one of them recently came back from sick leave but I always managed to reach one if needed. The other thing I discovered and do take advantage of, but not abuse, is that you can ask the onc sec if you can email her with any urgent  messages/ questions for the onc. Actually, I did this with my ophthalmologist's sec too. But Im careful only to do it if its important. as im sure They wouldnt be able to cope with everyone doing it at once!  We also have a dedicated pharmacy enquiry line.....good but 

take a while to get back to you. I have checked out things like juicing, ooc meds etc when I cant find info on the web.

 

Moijan

DebHummingbird
Member

Re: General chat

Spud girl when do you return to UK? X
Carolyn52
Member

Re: General chat

Sooooo. .I get into bed last night and settle with my book ( book club one) and then the humming sound .yes its mosquito time again. They love me ..last year woke up with thirty odd bites. Anyway hubby and I chasing the thing around bedroom with magazines and anything to swot it ..no luck so fly sprayed the whole room. Coughed a bit ( me not the mozzy) and it seems it did the job.
Summer nice but the little tikes are a nuisance.
Xxx
EJ81
Member

Re: General chat

Spudgirl I didn't tell them! Under the disabilities act there is no obligation to declare medical conditions to an employer. I only work mornings because I had had quite a while off and I get tired. Plus I wanted time with my son as he doesn't start primary until September.

I have hair at the moment so that probably helped, otherwise I would have worn a wig. I wore a jacket to cover my pic line and all I said (they didn't ask but I felt I wanted to be semi honest) was that I had a chronic condition which was managed and under control and I felt I should warn them I may occasionally have hospital appointments that would require some time off. To be honest I think I could have kept quiet as they immediately said it was none of their business and wasn't a consideration. I did tick the box on the application form about having a disability so I had a phone conversation with the county's hr department and that was it. I hope this helps xxx

DebHummingbird
Member

Re: General chat

Thinking of you big time /I found my primary while living in Malta and flew home as you will do.Its such a shock but you sound brave . I have no idea who my Oncologist will be or what my chemo will be so its that limbo stage.Thinking of you - big hugs D
Spudgirl
Member

Re: General chat

Thank you ladies for welcoming me.  I'm having good and bad moments but I am sure once I am back and have the body scan and I know the full picture that I'll start to feel more in control.   🙂 

 

Ellie, I read on another thread that you stopped teaching and became a TA.  I am currently a TA for Maths at a secondary school.  I have only been doing the job since Sept and just finished my Cache Level 3 qualification.  I absolutely love the job (my previous job was for an IT company and massively stressful ).  

 

Anyhooo, because we are having to return to the UK next week I have to leave my job.

 

i was really hoping that when I have gone through initial treatment ( I am guessing chemo will be involved as my primary was TN ) , that I could apply for a TA - Maths job, but no idea if they would even entertain me with secondaries.  I'm just wondering what your experience in applying was.  I was thinking of perhaps volunteering part time, just to get my foot in the door perhaps ? 

 

xx 

Barton
Member

Re: General chat

Oh Carolyn, you are funny! I haven't heard of either saying! I hope I don't get a baby too!!! (bit too old for that, thank goodness!).

 

Hugs. Barton.x

 

Ps, sorry, just realised you posted this several days ago! Don't know how I missed that one.

 

Spudgirl, welcome, but sorry you have had to join us.

Marirose
Member

Re: General chat

Hello Spudgirl welcome

As Carolyn says rant and rave as much as you like we all know what you are going through. The dx of secondary mets are frightening and moving from another country back to the UK will take its toll on you I hope you have a warm loveing family and friends to come back to. Other ladies will join in to give you love and reassurance and help in living with this awful desease many ladies have lived for years with what you have right now so please try to relax when you can. Don't let the 'C' get you down it loves stress enjoy your move and I hope the new hospital will be a great help to you.

Come back and join the girls on here and on the Bone mets they are mad but lovely.

Love and ((((hugs)))) xxx 

Carolyn52
Member

Re: General chat

Welcome to the private group. You can rant and shout as much as you like as we all know what u r going through ..it's the fear factor but the nhs is here and they will put you on the best treatment for your Mets.
Enjoy all the threads here as we have all sorts going on.
Hugs xxx
EJ81
Member

Re: General chat

Hi Spudgirl,

Welcome to the forum. It is a really good place to ask questions and chat with other print the same situation.

You must be feeling very lost and in limbo. The time between diagnosis and getting a treatment plan is really tough. Please be kind to yourself as this is a huge thing to take in. It's good they are planning to do a biopsy if they can as that will help them choose the best treatment. Its also great you have an appointment already for when you get back. I would advise taking someone with you and maybe writing down any questions as it is a lot to take in early on.

There are a lot of treatments out there and once you know what you'll be starting have a look on the treatments threads as there is lots of good advice for managing side effects off you get them.

I have a little one too so I know how you feel. It is really hard to know how much to tell them.

Lots of love, Ellie xxx

Spudgirl
Member

Re: General chat

Hi there

 

ive just joined the private group.  Just looking for a bit of positivity I suppose.  Not sure I should have put it under general chat. 

 

I am currently living overseas.  I had DCIS in my left boob in 2010 then TNBC in my right boob 2013 but it was less than 2cm and no lymph node involvement so I was utterly shocked last Monday when I found out I have a 1cm lung met and 1cm bone met.  I knew there was something wrong but never expected mets.  We (myself, my husband and young daughter) are being sent back permanently to UK next Sat, and I have a hospital appointment on the Wednesday.

 

My doc here has told me the hospital will try to biopsy the Mets and do a full body scan to check if anything else is going on.  

 

 Just feeling a bit lost, and scared of reading stuff in case it's something I don't want to know, but then feeling I need to try to find something positive until my appointment. 

 

xxx

 

 

Carolyn52
Member

Re: General chat

Hiya Barton.
Glad u have a new booby which sounds long overdue ..five years is a long time.
Well I've heard of " new home ...New baby"
BUT:
Never " new home ...New booby" .
Xxxxxx
Barton
Member

Re: General chat

That sounds great, Ej! Would love a group get-together.

 

Regarding BCN's, I haven't seen mine since I was originally under the Surgeon (so to speak!). Saw her at Appointments for a while, but since secondary diagnonsis, I haven't seen her. She did ring me once when I asked at Surgeon appoiintment for a reduction on the other side, but nothing came of that either. I had to ring on Monday to ask for a new prosthesis, as my iriginal one (nearly 5 yrs old now) split over the weekend and was leaking sillicon! I had to hold it together with plasters. Anyway, when I adked for my BCN I was told she had left some time ago! Anyway, I now have a nice new prosthesis, which I picked up from the hospital after work this afternoon.  I was impressed with the speed at which it arrived. Still didn't see a BCN though.

 

Hugs. Barton.x

EJ81
Member

Re: General chat

That sounds lovely. I'll pm you xxx
Carolyn52
Member

Re: General chat

Hiya ej81
Didn't realise you were at Exeter too. Both Barton and myself are under cherrybrook oncology. Small world.
Barton and myself meet for coffee often so maybe you would like to join us too. We can put the world to rights between us.
EJ81
Member

Re: General chat

I was assigned a bcn initially but haven't seen or heard from her in ages! No mention of anyone for sbc when it was diagnosed about a month later. So yes, I have a bcn, but only on paper really.
Carolyn we get treated at the same hospital so it's interesting that you feel the same. Like you I look to this forum for help and support xxx
HelenAquarius
Member

Re: General chat

I'm lucky.. At my hospital there are a team of 4 BCNs, often they appear at my onc meetings and they are always at the end of th phone and I know them all by name and they seem to know me when I call. 

 

Feel for those of you with less good service 😞

xxx

BJH
Member

Re: General chat

Unfortunately both BCN nurses that I became close to left roughly at the same time.  I could ring them up and get the truth and also reassurance.  Two new BC nurses took over, one with no experience whatsoever ( I knew more than her).  Dont have as much confidence now xx

Carolyn52
Member

Re: General chat

Karen that is really good that u have bcn and a good relationship with them. What I do have is community nurses that come to the house monthly and do my blood tests for my bone injection which is done at chemo ward at hosp.
I think in time this injection will b done at home by them too. Although cancer isn't their sole task ..they are wonderful and helpful.
At the moment I am only on letrozole and bone inj so i expect once I have to have the strong stuff ..there will b a better support team in place.
KazMOr
Member

Re: General chat

Hi Ladies,

when i was had primary diagnosed in Jan 2011 i was assigned a BCN....but to be honest I didnt really have much communication with her. I always saw a different BCN when I went for my oncology check ups.....But since having my secondary diagnosis in Oct 2015, I am now on first name terms with all 4 of the BCN's at my local hospital.....and every month i see one of them for my Zoladex jab....and they are always at the end of the phone if I need to ask them anything

They definitely seem to be more friendly and approachable since my secondary diagnosis.

Karen x

 

Carolyn52
Member

Re: General chat

Yes I agree. When I had the primary bc ..I literally fell over bcn and they rang etc all the time.
Since secondaries ..haven't seen one !! Get more help and advice here than at hosp.
I think we spoil the stats for survival rates of bc!!
Xxx
Stillhere
Member

Re: General chat

As its a private forum, I'd love to know how many of us have a secondary BCN? I think many people don't? Even at the Marsden (where I am very happy with treatment) the primary one vanished into thin air once a CT scan gave me bad news in 2013. Since then I've seen no one until I started on my drug trial. Lo and behold not 1 but 2 BCN practitioners!!

I felt that I had been abandoned at the most crucial and devastating moment and this from a dedicated cancer hospital. Has anyone else had the same experience?

Carolyn52
Member

Re: General chat

Good morning ladies.
I see we have 89 members in the private forum but only about 20% actually post here.
Please feel free to join in ..we have threads for most topics and welcome everyone.
Don't b shy.
Xxx
Carolyn52
Member

Re: General chat

Hiya chocolates . It's difficult if you are using your phone. I have all the threads set up so replies ping into my e mail box and then I reply on them.
Xxx
Chocolates
Member

Re: General chat

Please accept my stupidity - I just want to check - how do you ladies access this group once signed in.  I have to click the private secondary thread - scroll to find the moderator and click on the link.  Is that how you do it or is there a simpler way!!!

 

thank you 

Carolyn52
Member

Re: General chat

Anybody else think of any other ideas as threads here ? Running out of ideas and we have lots of new members now.
Waffles
Member

Re: General chat

Sounds fun. Count me in Carolyn xxx

Carolyn52
Member

Re: General chat

Or of course we could set up our own on this private forum ?
Interested ?
Carolyn52
Member

Re: General chat

Hiya.
On the forum list is something called " talk to people like me" then there is something called games and chat.
There is little word games that have been going since 2008 and it would b nice to get it all active again ..if you have five minutes here and there.
Carolyn52
Member

Re: General chat

Just thinking ladies ( dangerous) but I don't think I have ever heard of anyone in the royal family getting breast cancer not even the ladies that have married into the family.
Guess they must b just lucky.
Hugs xx
rosie53
Member

Re: General chat

Yes Carolyn, yet another wonderful person lost to this dreadful disease! such a waste xx

Carolyn52
Member

Re: General chat

Victoria Wood

 

Well ladies another lovely lady lost to Cancer. Not sure if it was Breast Cancer but  she will be missed in the comedy world. I still miss Jackie Collins as I was a big fan of her Lucky books !!

 

Hugs xxx

 

Carolyn52
Member

Re: General chat

So glad u had a good hol. Cyprus is lovely and just what the doctor ordered ...vitamin d.
I hope the letrozole starts working soon. It does take a while before it kicks in.
I've been on it six months now and waiting for my scan appointment to c if its done what it says on the tin!
Glad a to z thingy works ! I'm more active and alert at 2am than any other part of the day. Don't do early morning's anymore .in fact still in Pjs now braving the shower and getting dressed.
Hugs xx
Deedeepuss
Member

Re: General chat

I'm back from Cyprus, can't believe how quickly it went. Sunshine was nice and ate too much. Managed to slip in a few cocktails. Done 2 days back at work, hard going. Glad it's the weekend. Now got a sore throat and feel a bit rubbish so a restful weekend. Had 1st cancer marker blood result since going on Letrozole and it's gone up, but early days as I'd only been on it 4 weeks when I had bloods done, far too early. Have bloods done again 14th May so hopefully things will stabilise. Went with my friend to Cyprus and we had fun time doing A - Z, I always fell asleep first 😫 xxx
rosie53
Member

Re: General chat

Hi Carolyn, went for lunch today with my friend, on route we called into a love little clothes shop.......need I say more!!!!😀 came out with a dress and little handbag...perfect for my holiday! 

Hugs Janette xxxx 

Carolyn52
Member

Re: General chat

Excuse the duplication ladies as I've just posted on bone Mets thread.
Is anyone still in touch with finty as she was posting on the inspire website about her treatment in Germany and a lady ( hamster 39) is trying to contact her for info. Her account is now marked inactive.
I know she was quite active here a few years back and hoped someone might still b in touch.
Hugs xx
Carolyn52
Member

Re: General chat

Jeanette
Hope u have your secret shopping trip organised this week. Got to be done.
I have ordered my book for the club online and another tapestry kit as its sort of my new hobby. Everyone is fed up with them
though now and dread them.Grandchildren love them so I tend to do teddys and cars etc.
Hugs xx
Carolyn52
Member

Re: General chat

Thank goodness for our wonderful nhs here in the UK.
I some times just dip into a website called inspire and its sad to see ladies in the USA having to battle with their medical insurance to get their vital chemo etc treatments paid for.
One lady has only been given six denosumab injections within her insurance whereas here I think they r on going? At £340 a pop.
They do have the wonder drug ibrance available where as here I think its still being trialled but its only a question of time. They seem to have it on expensive medical plan insurance but without much support of side effects etc.
Hugs xxx
Carolyn52
Member

Re: General chat

At last someone like me .....
I've chosen one from Argos as I've told hubs that my nectar points will pay for it ....haha and pigs will fly but it will do for now.
My house is beige too as we only.moved in last June and haven't done any real painting but I put loads of black and pink things around. Tacky by me .....
rosie53
Member

Re: General chat

Hahaha Carolyn your a girl after my own heart!  I do exactly the same, just wake up one morning and decide I need something, I was actually going to have a trip to Dunelm myself whilst hubby was at work 😀 but didn't get chance. Men are not like us are they, They will stick with the same old furnishings for years!!! My whole house is beige I feel I need to inject some colour especially in the living room, will have wait now til next week when he's in work so I can sneak off and go spending! 

Janette xx 

Carolyn52
Member

Re: General chat

I've gone all weird. Woke up this morning and decided I need a new standard lamp for my lounge. I have a perfectly good one but my fingers won't stop looking at e bay and Argos websites?
Perhaps I miss the little man and his van bringing me packages or perhaps I'm turning into a shopaholic ! Trying not to let hubs see me looking !!!
Carolyn52
Member

Re: General chat

Oh ladies I'm so envious of all these lovely hols u have booked. Maybe we will get something booked but in UK as we have let our passports run out now. Been to Cyprus and grand canaria and loved them both.
Enjoy Cyprus deedeepuss. 3 more sleeps now .
rosie53
Member

Re: General chat

Great pic BJH, hope your having a fab time in Gran Canaria, we have booked to go there for Christmas this year, it's the first time we have gone away for christmas, it's something we have always wanted to do so we just bit the bullet and booked it in Jan.

Deedeepuss, how exciting 4 more sleeps to Cyprus, we went there for the first time last year and loved it, so much so we go back 10th September.....can't wait!  

I also had a rubbish nights sleep, it's like musical bedrooms in our house at night time, I go in the spare room then still can't settle so then hubby gets kicked out and goes in there and I'm back in our bed 😀 .

Hugs Janette xxxx  

Deedeepuss
Member

Re: General chat

Hi

Lovely photos.

Yes I struggle with remembering people without a face to put to a name. Having your avatar as your photo is always helpful as you see it more often. From what I can see choosing it is limited. I hate having my photo taken but will try and find one.

Enjoy Gran Canaria, I love it in the canaries. Going to Cyprus Weds. 4 sleeps to go, that's if I can sleep! Back to the A - Z! Done all sorts with it, doin old fashioned sweeties at the mo. Didn't work tonight though so got a cuppa. Must be the excitement of only 2 work days left lol.

Xxxx