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? Am I just strange? (Don't answer that, Carolyn!).
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!
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.
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.
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
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 ?
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!).
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.
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
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
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.
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.
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 😞
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
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.
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?
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!!!
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 !!
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
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!
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