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Bone mets - please join in

Carolyn52
Member

Re: Bone mets - please join in

Jultz ..its the worst time being on your own .
Nothing I can say will make you feel any better but I am here if u want to off load anything.
I always find tidying out a cupboard helps or scrubbing the bathroom ...or go out shopping but I expect you are too tired.
How about getting your son's x box or ps3 loaded up with a really intricate game and get absorbed.
Hugs xxx
julzd
Member

Re: Bone mets - please join in

Thanks carolyn it's the waiting and I'm on my own everyone at work so mind working overtime as you can imagine x x x
Carolyn52
Member

Re: Bone mets - please join in

Oh jultz ...I know how u r feeling and so does everyone here.
Think positive ....two types of chemo blasting will surely kick the cancer up the bottom !!
Also Jeanette ..have u got yr scan results in yet

Oh the waiting is just as bad isn't it ?
Hugs xx

julzd
Member

Re: Bone mets - please join in

Hi ladies I'm totally stressed out for the scan results tomorrow x x
Carolyn52
Member

Re: Bone mets - please join in

Hiya Eugenia.
If you look at the thread dated 3rd may from Lizzy at bcc ..there is very good steps how to join us on the private forum.
Look forward to meeting you there soon.
Hugs xc
Giedre
Member

Re: Bone mets - please join in

Hello Carolyn.  I will look now how to join the private family and probably post a photo

xxxxx.  My real name is Eugenia Sophie Giedre but I thought I had to use a screename so I chose Giedre.

Eugenia. Xxxxx

Mrstimps
Member

Re: Bone mets - please join in

Hi carolyn, same for my mom, her and my dad have just retired and moved down south, im so glad they are close by now. Fingers crossed her aptoontment comes soon, she feels in limbo at the mo not knowing whats going to happen x
Carolyn52
Member

Re: Bone mets - please join in

I think over the years I have been a master of dieting . I found rosemary Conley worked for me the best but I don't know whether it can be done online.
Slimming world is good if you like loads of meat and fish which I don't and eating pasta and jacket potatoes is a lot slower loss.
Best of luck with it though.
Hugs xx
julzd
Member

Re: Bone mets - please join in

I'm thinking of joining slimming world online it's 60 pound for three month has anyone done this ? I used to go to group but thought I might try online. I have put 5 lbs on in three weeks when I got weighed at hospital yesterday so I need to do something ! X x
Carolyn52
Member

Re: Bone mets - please join in

Hiya mrstimps
Mine came back after nearly twelve years and I had looked forward to retirement , travelling and growing old disgracefully !!!
Hugs xx

rosie53
Member

Re: Bone mets - please join in

Thanks julzd, good luck for Friday.
Janette xxx
Mrstimps
Member

Re: Bone mets - please join in

Hi all, just reading your comments has made me feel alot more postitive about my moms diagnosis, im trying to get her on here but she is a bit of a technophobe lol. She has a bone met on her sternum and 4 nodules in her lung, came back 14 years after she kicked its bum, just waiting for the oncologist apt so we know what the plan is x
julzd
Member

Re: Bone mets - please join in

Good luck for results tomorrow janette I get mine Friday im stressing x x
Carolyn52
Member

Re: Bone mets - please join in

Just ordered a new tapestry online as I finished the last one soo until new one arrives bought a felt monkey to sew and stuff from £1 shop ...
Better than being a aunt Bessie old dear tonight with binoculars ..
Hugs xxc
Carolyn52
Member

Re: Bone mets - please join in

Jeanette ..all the best for scan results tomorrow ...always a bit scary .

 

hugs xxx 

rosie53
Member

Re: Bone mets - please join in

I feel a lot better than I did thank you Carolyn, well I should get my CT results back tomorrow......watch this space! I did ring my bcn thus morning to check they have finally been reported  and she said they had so expecting a call tomorrow once my onc has read them. 

Hugs Janette xxxx 

Carolyn52
Member

Re: Bone mets - please join in

Hiya Jeanette ..how are you feeling today ..did you manage to sleep off your tiredness and sickness.

I suppose we have to expect good and bad days .

Oops just about to go online shopping ..could be expensive 

 

Hugs  xxxx

rosie53
Member

Re: Bone mets - please join in

Hahaha Carolyn, the Aunt Bessie ad came to my mind too!!😀😀

Janette xxxx 

Carolyn52
Member

Re: Bone mets - please join in

Omg Karen ..what is happening to me now ..spying like the old dears on aunt bessies ..ugh hate their food too !!
Got to find something else to do at silly o clock with cramp now ..
Oh no ..just seen one magpie and forgot to salute it ..now I'm in trouble ..I've just rubbed my buddas belly to compensate ..hope it works.
Hugs xxx
Carolyn52
Member

Re: Bone mets - please join in

Hiya giedre.
So glad you are staying here with us ..hopefully you are getting lots of help and support from our little family.
Please join us on private forum and join in games and even post a photo in the gallery.
Hugs xx
Giedre
Member

Re: Bone mets - please join in

Dear Redridinghood.  The moderators let me in to private message ladies on this site.  I messaged you last night. Did I do it right and did you get my message?

Please let me know if you got my message.

Do you know The Royal Saracens pub in Beaconsfield?  That is where our son Simon lived and wworked and we had a lovely dinner and drinks there when we visited.  We also caught the bus from Beaconsfield to a shopping centre, I think it was called Watford? Or something like that.  So if you were nearby, maybe we were shopping in the same shop but did not know each other, but now we do.

giedre xxxx

KazMOr
Member

Re: Bone mets - please join in

Hi Carolyn,
Your post did make me chuckle. I now have a mental picture in my head of you sat with your binoculars, a bit like the ladies on the aunt bessies advert....
Karen x
Carolyn52
Member

Re: Bone mets - please join in

Hiya all.
Soo I couldn't sleep last night ..tried playing on tablet ..no shopping done and then I got cramp so out of bed and look out window ..you know the wiggly wiggly dance ..
Neighbours across road have a big plasm tv in their bedroom ..no pulled curtains ..well they weren't watching the news or peppa pig!! Nothing that my tv has ..so tonight I'm digging out binoculars ..omg ..I'm a peeping Tom now!
Hugs xx
scratch
Member

Re: Bone mets - please join in

Hi mo..my 🐱 is called scratch..shes nearly 18.her fur is manky and she walks slow..so I named myself her lookalike‼ ...take care sharonx
redridinghood
Member

Re: Bone mets - please join in

Sorry scratch......I have just noticed that you have signed off as Sharon! Should have used that.   mo

redridinghood
Member

Re: Bone mets - please join in

I agree, scratch. This is a good basic thread........for 'boneys'. The private threads are good for interesting extras, as Carolyn said. So many new things there. And I think registering for the private means you can send private messages to individuals although I haven't done that. But this has been my basic thread since dx, with cutaneous thread for 'skinnies' because of my skin patch, and has been so useful and supportive. I think this is the busiest thread. It feels pretty private here really. I certainly didn't know it existed pre-dx.

 

      mo

julzd
Member

Re: Bone mets - please join in

Alibee I kept my eyelashes and eyebrows on fec so fingers crossed for you x x x
julzd
Member

Re: Bone mets - please join in

I am in private group can't see anything on the phone but pressed a few links and got there in the end lol x x
julzd
Member

Re: Bone mets - please join in

Yeah Sharon let me know when you've been il challenge you to some lengths lol it will probably kill me doing one. I'm not on the private one yet il have to sort lap top out. I couldn't care who reads what I write they would be bored lol x x
scratch
Member

Re: Bone mets - please join in

P.s.can now access other site.but am happy to post on this still......if any weirdos want to read what we have to put up with they must have a sad life themselves.xsharon
scratch
Member

Re: Bone mets - please join in

Jultz..yes I'm putting swimming down on my to do list..only stopped when got secondary and went on capecitabine chemo oncologist told me no more swimming while on chemo. Then like everything else once I didn't go for a while didn't miss it..bit like alcohol..il let you know when iv beenxsharon
Allibee
Member

Re: Bone mets - please join in

Hi Carolyn, I'm ok at the moment and keeping busy. I think your probably right about chemo but I do feel ok at the moment and I'm grateful for that. I'm so glad to be on a count down now. Just praying that it's doing its job! I got Spencer to clip hair right back and I've got my new wig which is really not that bad. I'm so looking forward to having my own back. I've still got eyebrows and lashes so that's a small victory. Take care Carolyn I'll keep you posted. Xx
julzd
Member

Re: Bone mets - please join in

Sharon if you enjoyed swimming I think you should give it a go it might be good for bones x x x
Carolyn52
Member

Re: Bone mets - please join in

Hello allibee .
Was worried hadent heard from you ..yeah..halfway and it will all be fine and go quickly but remember chemo is culmutive so it might just get a bit harder ..oops nothing like me to spoil your day.
Keep in touch and if you can ..join the secondary private forum ..instructions are a bit further down this thread as we have lots of distractions there like games, book clubs etc.
Hugs xx
redridinghood
Member

Re: Bone mets - please join in

Hello Geidre,

 

Yes, I know Beaconsfield very well! Gerrards Cross is about 2 miles away & in fact I live in Chalfont St Peter, near GX. Strange that you know Beaconsfield! It must be fate!

 

Your Lithuanian background is very interesting and you are right to keep a Lithuanian passport. It seals your heritage. I haven't been there myself, but a friend has, sailing round the Baltic. A beautiful place. I find as I get older that my family background has become much more important to me and I intend to write about it for my little grandaughter. She will want to look into the telescope of time when she is older and learn about the people she descends from. I feel an urgency now, with my dx, of course. She is only 4 so I can't just talk to her about my parents, grandparents, and further back. So I'll write.

 

Herceptin? At my sec dx my biopsy showed me HER2+ve, and my onc was definite about me going onto docetaxel so I could have herceptin and perjeta. You must have docetaxel, then stay on the other 2 for life. Anyway, I was braced for this, and fully prepared, but at the next apointment he had changed his mind. I do look fine, and feel fine, and I think he may have discussed me........must discuss all patients with colleagues.......and another consultant advised letting it wait. It took the wind out of my sails! I was fully prepared. But then my small chest skin patch appeared, and another biopsy last Nov showed as HER2-ve, so herceptin forgotton now. But.......he said I would be retested along the line because of a history of HER2. This cancer is so unpredictable. Some ladies here have said we should ask for a check on things like HER2 every now an dthen because it can change either way.

 

You are very fortunate to have organs clear. I know from here that people can control organ involvement, but it is nice to be clear of that worry. And stable bones is good too. At the start I wanted my bone mets to disappear, but now I am happy with stable. I had my monthly denosumab today and apparently it is a bit anti cancer as well as strengthening bone. Do you have denosumab?

 

TMs? Reading other's posts here there seem to be 2 camps about them. My onc just doesn't use them at all, but I know that many do. Among those there are camps too! Some just raise an eyebrow at them, while others, like your onc, make decisions because of them. But really just changing your hormone treatment isn't really very extreme.......exemestane is very similar to letrozole, and other aromatase inhibitors. You may come full circle! But I think I will raise the issue of TMs with my onc in July, just to air the subject. They need to know that we notice what they are doing! But this sec cancer is very difficult to judge, and I know there are opinions among oncs about lots of things. But if  you are feeling well, and stable, it's going very well!

 

Worrying about future spread is central to this diagnosis. But you aren't alone! In many ways it is the hardest part, going from having a long life stretching away in front.....my dear parents were 97 and 98 when they passed away.........to trying hard to value every moment. The 'now' is very important.

 

Geidre, you have travelled to many cities in England! And your son is a global traveller! When my son started his job in Birmingham I had to look in my atlas! i know the south much better, and Yorkshire where my father grew up. And I know Ireland quite well......my mother came from Galway.......a little farm halfway up a mountain! And yes, a coffee to meet 'real' would be very nice! You need a secondary group in Canberra.  But keep coming here. You will find good ladies here who understand and share.

 

There was advice from a BCC moderator today for getting into the private areas.........from Lizzy. Did you see it? much clearer than my explanation!

 

Well, I am rambling on! Sorry. i just write what I think! Hope the weather is good in Canberra.

 

Best wishes to everyone on the thread tonight. Hope all scans etc are going well. I hate scans, or at least waiting for the results.

 

Goodnight.

 

mo      xx

 

 

scratch
Member

Re: Bone mets - please join in

Yes I dont see why I cant swim really now..i used to swim twice a week for years.but stopped when this came back and on chemo oncologist told me not too as germs in pool..something to think about and achieve .i used to feel relaxed after swim or zumba. Not allowed to zumba now coz of bones...sharonx
scratch
Member

Re: Bone mets - please join in

Jultz..yes I'm eating well..oh six months to feel better..yes in 2004when I had chemo I suppose it did take ages to feel ok its hard to think back..il try to look at private. Club again..let me know if you get in .sharonx
julzd
Member

Re: Bone mets - please join in

Glad you enjoyed day centre x x
julzd
Member

Re: Bone mets - please join in

Sharon if my results are good Friday im going to ask about going swimming I miss doing things I need to try and get back into a routine I'm going to end up huge x x
scratch
Member

Re: Bone mets - please join in

Hi ..daycentre nice met nice people.had nice lunch there..didn't do any complementary therapies today.will try it for few weeks to see how I go.they do lots if different things every week..yes I pay 25pound for Reiki.but in the local churches they do healing which is exactly the same for a small donation.theres one near me on Thursdays they have about seven beds and Reiki healers just for donation...i still go privately sometimes and reflexology privately sometimes.xx..it all helps to unwind me..sharon
julzd
Member

Re: Bone mets - please join in

Hi Sharon been to chemo ward today for h and p was there three and a half hours it's not bad not having to take steroids and anti sickness. I asked about boob that's what they said it could be nerve pain and it could just be getting feeling back she also said it takes six month to recover from docetaxcol. I've put on 5 pound in weight in three weeks so diet starts now I can't stop eating lol. Can you see the private posts I can't x x
scratch
Member

Re: Bone mets - please join in

Hi jultz I can't see this link either but the other day I got into there saw word game so does that mean I'm on there.. ..xx. Think you may have nerve pain it apparently takes long time for things to heal.so you get random pains...xxsharon
scratch
Member

Re: Bone mets - please join in

Hi allibee..glad your doing well..halfway there.now you can count down..also glad your side effects are good take care sharonx
julzd
Member

Re: Bone mets - please join in

Hi carolyn I must have to join private group on lap top it won't let me do it on my phone I can't see a link to add myself so I will have to sort it tomorrow x x
Allibee
Member

Re: Bone mets - please join in

Hi Carolyn and all ladies, just a quick up date, well 3rd FEC down and I'm half way through chemo now so I'm quietly celebrating the downhill run today. I've been going into work a couple of days a week so life is feeling pretty normal and I'm happy to say that I've still avoided SE which I'm very grateful about, I hope that your all well and enjoying this nice weather. Do take care and keep up the fight and keep shopping Carolyn. 😃 Xxx Allie
KazMOr
Member

Re: Bone mets - please join in

Ok Carolyn, you set it up and ill start, x
Carolyn52
Member

Re: Bone mets - please join in

Right then ladies ..I will set it up but Karen being a professional photographer ..you can start ...my photos are dreadful ..heads missing and bits of other things lurking that shouldn't be!!
Hugs xx
Waffles
Member

Re: Bone mets - please join in

Good idea Carolyn xxx

KazMOr
Member

Re: Bone mets - please join in

Hi Carolyn,
Im a photographer so I always love a photo gallery.
x
Carolyn52
Member

Re: Bone mets - please join in

It's so nice we have so many new members joining in the private forum. We have lots going on there ...book club, tv reviews , recipes and games.
I'm thinking ( dangerous) about starting a photo gallery thread too ..so we can post our pics of anything like pet hamster, cars , kids or anything really so we all feel more close and can relate to each other.
Hugs xx