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Bone mets - please join in

Lindybutterfly
Member

Re: Bone mets - please join in

Ok....it seems I'm on here straight away now but I can't find my last post! Ah well....it's bed time now. Hopefully see you tomorrow! Sleep well xxx
Lindybutterfly
Member

Re: Bone mets - please join in

I'm struggling with the time it takes to moderate what Ives said.....three days now and no posting. Makes it very hard to have a conversation 😟
Jam
Member

Re: Bone mets - please join in

No I haven't either the only regular contact I have with anyone are the nurses on the chemo unit that give me my Zometa every 4 weeks. Haven't heard from BCN since secondary diagnosis. Onc lets me have a scan every 6 months but wants to leave me longer (I persuaded him last time but not sure next time). Results again 20th April. Have got lots of questions for him next time thanks to you lovely ladies on here. Was anxious a few months ago and put in touch with a local Macmillan nurses support group. So now have a lovely nurse I can contact whenever feeling alone. Just had to join in with your rant Marie. Thanks Janet x
2catlady
Member

Re: Bone mets - please join in

Marie,we are always there for a friend in need so you shout,rant ,scream we all understand xxxxxxxxxx
Glad thing are getting sorted.
Now watch for the vapours in your "condition" xxxxx
Huge hugs,Helen
Marie123
Member

Re: Bone mets - please join in

Thank you , Helen, Nicky and Janete, for your support.

Strange thing though once I had cyber shouted the phone started to ring with appointments. It just felt ridiculous that part of my stress is   sorting things out and thinking there are things they are  not telling me, a little paranoid

However,I do think about those ladies out there who for one reason or another are unable to sort through the mess of appointments.

 

On the Poldark theme I actually think the first series was better, the tension just isn't there. Honestly the books are brilliant if they do keep to the story a lovely young doctor should be coming to Cornwall. Oh dear , I think my naughty alter ego is going to get  naughty again !

Thank you once again I don't know how I managed  before I started talking to you , take care

Marie xxxx

rosie53
Member

Re: Bone mets - please join in

Marie, i'm 12 from sbc dx and have already learnt that i have to be prepared to chase appts, scans etc!!...its so wrong.
Hugs Janette x
belinda
Member

Re: Bone mets - please join in

Nicky, I'm still getting used to the cardio, cancer juggling. X
2catlady
Member

Re: Bone mets - please join in

Marie,I'm exactly the same when your PBC everything is taken care of. I found as soon as your SBC nobody wants to know,we don't have nurses to help. I chase appointments all the time and it really annoys me. We suddenly become second best when we get SBC for some reason.

I feel very let down by the system. It one of the reasons I changed hospitals. But as in all walks of life /jobs there are good nurses ,doctors who care and ones that are doing it for the money and nothing else.
I heard one nurse saying she didn't want to go on day ward when I was in hospital ( they were short staffed)as you have to work on there ,really work for a wage,the horror!
One boy nurse who said he thinks you should have time while working To be able to stop and talk to your work makes while working!! Not the patients!!!! Breaks,lunchtime ?? Like the rest of working people is when you chat!!

But there were some fantastic nurses on ward too,who I did tell them they were a credit to their profession .

Have a rant,we are here for these times too. Huge hugs,Helen xxxxxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi Marie
Yes, unfortunately it is often left to us, the patient, to make things happen. After 7 years of mets I'm used to it by now and keep on my toes but initially it can be very frustrating, soul destroying and downright exhausting. As to the care plan I only have one in place for end of life stuff as per the GPs directive now but don't get any help or advice about my BC. If I'm lucky I get to see a breast care nurse at my appointments and she seems more on the ball than my current onc who still doesn't seem to know what drugs have been removed from the CDF list. I have learnt from my experiences that I have to push for anything that is not the norm. Having had a whinge ( to back up your feelings) I can't complain to the actual nursing and care on my chemo ward, they are great, it's just the other 'obstacles' put in my way. Please feel free to rant whenever, this is what the forum is here for, to help support us all and if you can't rant here, to others who understand, where else can you?
Take care
Nicky x

Jo_BCC
Member

Re: Bone mets - please join in

Hi Marie,

 

sorry you're feeling this way at the moment.  If you need to talk to someone in person and in confidence, then please don't hesitate to call our helpline that's what the staff are here for.  Lines are open until 5pm today (9-5 weekdays and 10-2 Saturdays) 0808 800 6000 calls are free.

 

Take care,

Jo, Moderator

Marie123
Member

Re: Bone mets - please join in

Hi lovely ladies this is the real Marie not my naughty alter ego,

Just want to have a rant, I feel I am constantly having to sort my treatment out for myself. It was assumed I must be okay because I turn up on time ! I flagged up that actually I've been finding things difficult. It was decided I needed some cognitive therapy for anxiety, guess what I have had to chase this up , calls not returned and generally made to feel a bit of a nuisance and now  even more anxious.

So sorry for this , but it does upset me , read somewhere we are suppose to have a care plan . Has anyone had one ? Marie xxx

bertie1
Member

Re: Bone mets - please join in

Welcome to the newbies sorry you've had to join us but you will find everyone on here very friendly and supportive.
Helen and Belinda thanks for advise re ulcers they have given me mouthwash and gel sachets so hopefully will be better by Wednesday.Helen hope your back pain has eased after your Rads you certainly seem a lot brighter,hope one of your hubby's get you the frozen egg .
Hope everyone else is ok
Kaye xxxx
rosie53
Member

Re: Bone mets - please join in

Afternoon Ladies or should i say you wanton hussy''s 🙂 Mr P is certainly bringing out the naughtiness in you all, he's really tickling your fancy isnt he ladies....haha!!
Hi to the newbies, sorry you have had to join us but we are friendly supportive bunch.....if not a little loopy at times.
Take care hugs Janette x x
2catlady
Member

Re: Bone mets - please join in

Belinda,I totally agree,I did feel like a naughty school girl.im just glad I said no which is not like me as I know I'm too soft sometimes. The damage they could have done to me,I don't even want to think about. I think the SCC came as a huge shock even though I'd mentioned the pain sooooo much and nobody listened. I did tell registrar that I had rang ward and they said if I couldn't get in just to take more pain killers. He was genuinely shocked at that. But at least for the past few days I haven't woken screaming in pain at nights or can't lie with pain so rads must be working. Just wish legs would coordinate with brain .
😷😷

Oh,yes,I've looked longingly at M&S Frozen Easter eggs,soooo pretty. Hope hubby gets me one!! But I do doubt it lol. With four hubbies,surely one?😧

I've started to use children's mouth wash as it's not as harsh on my mouth,Kaye. The one the onc ward gave me is very ouch!
Gelclare is great too got some off sister for mouth,very soothing .Ask onc ward or gp for some Kaye.

Have a great Sunday ladies,huge hugs,Helen xxxxxxx
belinda
Member

Re: Bone mets - please join in

Good to hear you are now half way through treatments Sheila. I have heard it's very tiring, rest up and hope you feel stronger soon.
Hope your bloods pick up Kaye. Do you have some Diflam wash? I find it the best for mouth ulcers.
Helen your hospital experience makes me cross. We are grown ups, they may mean well but even if it was you just didn't fancy it you should not be "persuaded" to join an exercise class. Thank goodness in fact, in light of your compression, you didn't join in. Have you seen the Frozen Easter eggs at M and S? Just got one for my little GD.
Hope everyone is having a peaceful Sunday. X
2catlady
Member

Re: Bone mets - please join in

Oh Marie,it's the m&Ms that got you in trouble. Lol. What you and chocolate were doing on naughty step has got me very cross. I'm still waiting for lines." I must not lust after MrP"

Hi,Kaye,welcome back xxxx yes,all this Mr P has got us ladies swooning and bursting out of bodices ,it's been a little busy on here this weekend. So we have saved you a seat to watch the bodice ripping duel over MrP between Marie and chocolate.

Poor chocolate had even bought him his own apron. Marie is now with MrPs child ( but we reckon it's too many cream teas xx)
Belinda and I are on refreshments and decorations . Colouring books to embellish MrP will be sold!!! Embellish where you wish,we are all women of the world ( some more than others!!! No names mentioned😉)

Glad you are recovering with extra week xxxxx

Huge hugs,Helen xxxxxx
Barton
Member

Re: Bone mets - please join in

Hello ladies! Just popping in to wish Bev good luck for next week. Also, Helen, you must be feeling lots better as you are getting cheeky and funny again! Long may it continue. Stesshead, so glad to hear your good news! NED, what we all aspire to! Welcome to the new ladies, 3n3 and Lindybutterfly (and, sorry I'm sure I have forgotten someones name, but welcome all the same). Marie, you naughty girl, you! Hussy! Chocolates, you should rise above this - you already have about 4 husbands! Good luck and hugs to everyone else, especially those having tests, results, treatments, etc. Hugs, Barton.x

bertie1
Member

Re: Bone mets - please join in

Hi ladies haven't been on for a few days as been down the caravan so it will take me a while to catch up with all post.hope everybody is doing ok and good luck to all having treatments,scans and results this week.Ive had an extra week off Cape due to mouth ulcers and low bloods so hopefully they'll be ok by Weds for my next lot
Take care all
Kaye xxx
Marie123
Member

Re: Bone mets - please join in

Dear Lovely ladies ,

Good luck to all this week with scans, treatments and results. Especially Bev wishing you a safe journey to London and hopefully better news. Angry eyes and positive vibes are go go go.

 

Poldark

Tut Tut some people really have got big imaginations (Chocolates!) I have a wedding band on my finger and a baby up my corset. I am not having triplets , you naughty girls. Please come to terms with  the fact that Ross is mine. Oh dear I think I've another attack of the vapours , maybe I need some peanut M&Ms love Marie POLDARK !!!!!

2catlady
Member

Re: Bone mets - please join in

Lol,still here,oh,pens at the ready!!! Oh,be still your wanton heart. Are you sure there's nowhere else to "embellish!!!" Im a 49 year old woman of the world you know ,nothing shocks me. Well apart from a wanton woman who is with baby or three ( or cream teas xxx)

Well I've just 2444 calories of family bag m&Ms !!! I may have to roll to duel as I'll not be able to walk at this rate.

Forgot about hour robbed from me this morning,grrrrrrr. I feel soooo cheated . Duel may have to be when I forgive hour stollen.

I'll give you another little saga of my hospital stay. This is the tale of the physiotherapists.
Well,one afternoon a "girl" came to tell me that I had been in bed a week and hadn't got out bed to sit in chair or put outdoor clothes on. She wanted me to join her in yoga and stretching class,haaaaa haaaaa,I wish I could bend.

Now,I'm a very shy never says boo to a goose girl 99.9% of the time.

At this point I was really ill,very emotional ,in dreadful pain and terrified. So I informed girl. I didn't have energy to get out of bed,it was too painful to sit in chair and if I put outdoor clothes on id have a mountain of ironing to go back too and would look like bag lady if hubby picked clothes. I " politely " told her to go away as I didn't want to do class or talk to her. This was while I had spinal compression too.

On day coming out they came in a pair !!! She said is this convenient to talk. I said no I don't want to talk. At this point they just stood there,think in shock!
She again said I was in bed. SCC dohhhh! Read my noted,lot of pain read my notes. She said I must do physical assesment . I said no. So she said can you walk to loo and show me. Begrudgenly I did show her and promptly got back in bed. At this point I said please can you go away I don't want to talk,walk or do exercise for you. At last they took the hint and went.
I'm blaming the m&Ms and steroids! Honestly I'm not like that normally.

Well,feeling totally shattered today and very brethlessness again. Oh RBC ,you dare drop ,I'll get angry.
Having a duvet day again and colouring so may have a little nap and dream of bodice ripping duel. Or other hubbies,if I can remember them😳😳😳

Enjoy your weekend ladies,huge hugs,Helen xxxxxxx

Chris 😘😘😘,Tracy 😘😘😘,Bev 😘😘. 😘 We are all with you. We are here as friends,supporters and hand holders and huge huggers. Stay strong lovely ladies xxxxxxxxx.
Oh,Sheila,a bacon butty buddy. I had one for lunch xxxxxxxxxxxx hope you are on the up ,I know the tired,slow, wobbly bit. You don't feel like you. Have plenty of naps and take care xxxxxx

Belinda,hope your colouring. We are I charge of the decorations for hussy duel .

Hugs to everyone,Helen xxxxxxxxx
Chocolates
Member

Re: Bone mets - please join in

Oh stillhere I've been rumbled - 'twas me and the baby oil but didn't he look good!!! I'm so pleased you are supporting me - marie has definitely failed in her duties and Mr p was not happy. He wanted to show how pleased he was with me by having his photo taken. However, dc has just arrived after his latest trailer wanting to know how well he did. Wasn't prepared for him so had to quickly watch trailer on line and say how perfect he was etc from every angle. He is hard work but actually is also very fine. All this juggling is getting very complicated. If GC calls then I've had it.
Sheila - glad that you are not feeling too ill although I bet the tiredness and slightly off balance is quite difficult to deal with. Half way through - very proud of you and what a difference it will make once you are finished and recovered. You're doing so well.
Bev, good luck for Tuesday, I think this is when you are getting your second opinion. We will all be with you holding your hand.
Wet and mis here - cooking a shepherds pie for all the family. Trying to persuade myself to get some washing on and do some cleaning but not looking very likely. It can be done tomorrow - hope.

Good luck to everyone with scans/results/treatment this week. Thinking of you all
Hxx
Stillhere
Member

Re: Bone mets - please join in

Ladies, I have had a near fainting fit when I opened page 3 of The Sun.....day Times to see gorgeous Mr P in all his glory (well, torso anyway) I gathered my wits to read that Mr P had BABY OIL rubbed into him by one of the female film crew ( another brazen hussy!)
I feel that Marie is now failing in her wifely duties......and we Cap ladies know all about oil massages....but we're not chosen for the task * sigh * Possibly Marie is now too rotund with the triplets.... Or too many cream teas....that I will have to support Chocolates with a " Go Choc" apron at the dawn duel.
Meanwhile I have carefully cut out the gorgeous photo and I'm arranging for its framing. Cat lady you are allowed to colour him in as long as you don't add embellishments!!! I'm talking about a beard obviously!!
Just some fun on a horrid, wet Sunday.
roxy12
Member

Re: Bone mets - please join in

Morning all.

I'm sorry I haven't posted for a few days but I have been so tired with the wbr. I don't feel Ill with it but very slow and wobbly! I have to have several naps but I am half way through so that's good.

Bev I wish you well with your appointment next week. I am thinking of you.

Helen I hope you are feeling better. Guess what I am having in a little while. A bacon butty!

Nicky, I hope your scans go well.

Stress head, congratulations on your results.

Belinda, I hope the transfusion goes well. I had one last year and it helped a lot.

Chocolates, enjoy your well earned break. 

Lots of love to everyone. Sheila xxx

Elily
Member

Re: Bone mets - please join in

I also have Denusonab injections every four weeks (and take two Calceos tablets each day. I've always have these injections in my upper arm but stomach is also possible (and may be better). You do have to be careful about dental work - my Onc stopped me from completing some work putting in crowns. So make sure your dentist knows you are having the injections and the Onc that you are seeing the dentist.
Jam
Member

Re: Bone mets - please join in

Hi welcome I'm also having Zometa and taking Letrozole. I find I have less energy for a few days after the Zometa but it's nothing compared to chemo. Also always feel as if mouth is dry. So you join lots of us with lots of different experiences. Hugs to everyone. Janet x
3network3
Member

Re: Bone mets - please join in

Thanks for the welcome 😊. Belinda I remember your name too but not your story so to speak, sorry. I will ask my onc about Denusomab. Tine xx

Lindybutterfly
Member

Re: Bone mets - please join in

Thank you so much for all your kind words. I really appreciate it.
My liver is clear of mets and so is my brain.....lots of jokes from the family about did they find a brain etc!
It seems my liver playing up was because I had an inflammatory response to my mets becoming active. I knew something was wrong and when my tumour count tripled twice and then I was too ill to walk it was time to go in.
I too am on dinosumab and have been since I finished my first chemo.
The reason I'm using the icecap is because I lost my hair last time which was the last of my worries. It grew back thick and wavy and I wanted to hang on to it!! Ah well.....what will be will be.
Really behind on Poldark! Haven't watched it yet but sky plus see the whole series!
Thanks once again. So glad I found you!
belinda
Member

Re: Bone mets - please join in

I remember you well Tine, I'm so very sorry you have to join us but I hope the treatment works so well for you.
Oh Ross P, all he has to do is turn the blooming handle, I do wish he would stop all this door bashing.
Leaves a nice cup of tea on ye olde Cornish kitchen table for Marie with her vapours. Closes door, sensibly and quietly.
Marie123
Member

Re: Bone mets - please join in

To the new ladies welcome, I haven't been on here long although diagnosed Nov 2013 with bone mets. They are a lovely group of ladies, they really are my new friends full of useful info and support.

 

Poldark update

Cyber pregnancy is different to normal pregnancy , no mood swings, or swollen ankles etc. I have shiny hair , a firm bosom and a twinkle in my eye. Life is good at Nampara . Ross is very attentive and life is good.

Oh my goodness Ross has just broke the bedroom door down , oh I think I have an attack of the vapours, Oh my goodness Ross. (Have to go !) Marie

 

Mermaid007
Member

Re: Bone mets - please join in

Hello 3n3 and LindyButterfly,
I am quite new here too, diagnosed with bone mets 16 years after primary! I don't post often but read everyday and find it very comforting. 3N3 your predictive text gave me a chuckle. I am on denosumab injections and exemestane hormonal feeling ok so far. Looks like we have missed the boat with Mr Poldark he is definitely taken and we are just going to have to make do with horrid George Warleggan or insipid Francis 😂
JulieD
Community Champion

Re: Bone mets - please join in

Hi 3n3, welcome to the friendliest thread going! It's all a bit overwhelming at first isn't it but you will settle and this site will help you find your way to accepting your new life. I am on Zometa, have been since dx 5 years ago. I could have changed but as it's worked so far I thought why mess around, I have a port and that would still need flushing every 4 weeks so have stuck with it. I do find I get a bit more achy just before and after for a few days but otherwise it's no problem. I would advise you to drink plenty to flush your kidneys. Denosunab is quicker so you might prefer that but they both work. As the others said, pop in and out whenever you want you'll find there is someone around usually within hours xx

2catlady
Member

Re: Bone mets - please join in

Hello and welcome 3n3,Tine,
all applies to you we have said to Lindy.
I would ask about denusumab,it's much newer than zometa and apparently works better. It's a injection in tummy and it doesn't hurt all ,all done in 5 mins. No being hooked up to IVs.they take my blood but it's for the next appointment. I'm given calcium tablets,which I must say I love!( but I am blonde and slightly mad hee hee)
I would defiantly get any dental work done now,tell your dentist( dentists are very clued up so don't worry,but you must tell him/her)
and onc what you are having and check it's okay.

We are not just a bone met only thread,myself have extensive spine,ribs,pelvis,lung,liver and some chest nodes mets.But we do tend to hang out here so we can keep an eye one everyone.

LD,I know,we are being swept along on this love triangle of MrP,babies,knitting,and bodice ripping. I think I'll need my third bag of M&Ms to cram me down!
Oh,Linda,almond ones,yummy. I loved any wintergreen mints,tic tacos when I was in USA. I bought loads home. It's like eating germoline but nice. Oh,I'm blaming M&Ms,chemo on my balmy mind today heee heee.
Huge hugs to everyone and huge hugs to our new friends,Helen xxxxxx

Tracy xxxxxx,bev xxxxxx,Chris xxxxxx

LemonDrizzle
Member

Re: Bone mets - please join in

Hello and welcome Lindy and Tine, horrible that you have to be here but good that you are.
Helen, surely bodice ripping at dawn is totally inappropriate for us well brought up shy and reserved ladies!!
Tine, I also have Zometa mainly because I'm terrified of anything that looks like a needle so, as I have a line, it's easy to administer with the other drugs.
Have a good evening everyone x
Lucy_BCC
Member

Re: Bone mets - please join in

Hi 3network3 and LindyButterfly
Along with the support here our helpliners are on hand with practical and emotional support for you, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

Here's a link to the BCC secondary information and further support ideas which I hope you will find helpful:

https://www.breastcancercare.org.uk/secondaries

Take care
Lucy BCC

3network3
Member

Re: Bone mets - please join in

Sorry this phone text prediction is awful, need to check my text before posting! Meant nick name in real life not task life. Also meant to write silly 3n3 not chilly and also meant to write never have pain when resting! Not p.... when testing. I apologize! Tine xx

3network3
Member

Re: Bone mets - please join in

Hi Nicki
Thanks for your quick reply. My onc mentioned another Biphos. drug but can't remember its name, he also mentioned it had less SE's but its not as strong? He said if Zometa causes kidney problems he would switch to this other Biphosph. Sorry don't remember you, but I agree the old forum style was way better. My nick name in task life is Tine, that's much better than the chilly 3n3 lol. I'm actually feeling very well, have some pain in my lower back but only take 2x 400 mg Ibuprofen a day, doesn't take pain away completely but its ok. Never have pissin when testing only when moving in a certain way. Tine xx

nicky08
Community Champion

Re: Bone mets - please join in

Hi 3n3 (it's quicker than writing your full name!)
I do remember you user name from a few years back but that was probably when the forum was in its slightly better format and we could all see a whole page of latest posts rather than just a few as now. Sorry that you have to join us as well but I'm sure you've read the comments we wrote to Lindy and the same applies of course to you. Sometimes it's very quiet on here over the weekend but not this one for some reason so both of you have been noticed already 🙂 It's a good idea to get any dental work done before starting on bone strengtheners, if possible as complications can arise. Just to mention though about going onto bisphosphonates, many of us bone mets ladies have been moved off these onto Denosumab which us a different type of bone strengthener and is much quicker to administer. Is there any reason you won't be having this? If there's not it may be worth asking about it as I think most of us who are on it have had fewer problems with it than on bisphosphonates. Other than that good luck with the rads, those who have needed them seem to get great results although pain can increase initially. Do ask away, we are a knowledgeable bunch and there's usually one if us at least who can help.
Nicky x

3network3
Member

Re: Bone mets - please join in

Hello all

I was diagnosed with secondaries (so far thankfully only in the bones, albeit wide spread) four weeks ago. I had my primary in Nov 2011. I'm HER2 pos and ER pos and started on Herceptin and Faslodex and receiving 15 rads to my lumbar region just now. Start on Biphosphonates in two days time as I needed to have root treatment to one of my front teeth first. I'm 45 and was on Tamoxifen after initial chemo, mx, rads and Herceptin but after they took my ovaries and womb out last summer they started me on Letrozole and six months later I was dx with the bone mets. I used to be on the forum when going through treatment three years ago, now I'm back. Looking forward to get to know you all 😊

2catlady
Member

Re: Bone mets - please join in

Lindy, welcome,I know you don't want to be here but we are a very friendly mad lot. We always support everyone through the good and bad times and our mad laughs.

You are never alone on here,so please feel free to jump in ,join in or just read. Oh,yes,I've been moderated a few times (naughty words about care and onc,oh I'm a bad girl ,lol)

I'm onto my second bag of M&Ms!! Yikes,I do hope I'm not with child too lol! But it won't be MrPs I'm going nowhere that saga.
Oh,dear,I've forgotton how many hubbies I've got. Chemo brain and new update on iPad that won't correct spellings or grammar now grrrrrrrr.

Belinda,I'll get the goodies ready for the show down. Now would we like,tea,coffee or something a little stronger. Love the apron idea
. Oh bodice ripping at dawn. Hee hee.
Hugs to everyone,Helen xxxxxxx
Chocolates
Member

Re: Bone mets - please join in

Lindy, welcome. As others have said we are a marvellous supportive bunch of ladies who with help from each other get through each day. This is a very active thread and although it is bone mets anyone is welcome so we are very pleased to welcome you in very difficult circumstances. I'm pleased the chemo is making you feel much better. I have no experience of the cold cap - hats and scarves for me - but you must do what is right for you. Remember to ask all you want, someone will be here to help. Rant, scream, shout also. Perfectly acceptable. Beware the moderator though - as an upstanding member of the community I have never been moderated but I believe Helen you have!!!!!!! Haha - and well marie needs to be monitored very closely.
Lindy, join in or just post occasionally - you are already very special by just being here.

Huge hugs,
Hxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi, and welcome Lindy. Sorry you are joining us as none of us want to be here but we make the most of it by having a giggle as the girls have said. Glad you are feeling better on your chemo already, it must be kicking the little uggers into touch. I've not used the cold cap, other than once 7 years ago but I found my hair coming out anyway so didn't continue with it after the first chemo cycle. For some it is a great success, for others not so. The one thing I did find by not using it was it greatly reduced the time I had to spend in the chemo unit! And I wasn't so cold either. Do ask any questions you may have, there is one or two liver mets threads as well as this very active Bone Mets thread so you may find answers there to any liver related questions.
I agree with Lynn that our OHs, and friends etc, have no idea how many silly laughs we have on here, along with the not so good bits as well. Keeps us, well, me, sane, I hope 😉
However what hasn't helped is chemo brain as I have now forgotten what I was going to write in reply to Belinda being called a matriarch, don't worry Belinda, it will come back to me 😉 probably in the middle of the night.
Nicky x

belinda
Member

Re: Bone mets - please join in

Ooh Lynn, hee a matriarch, I'm really as daft as a brush. Whispers, just turned 56. 🙂 x
Lynnq
Member

Re: Bone mets - please join in

Good morning everyone..
Was reading the posts earlier but didn't have time - then -.to post. OH asked me why I was laughing......he has asked in the past if it is a little but of a downer reading these forums....if only he knew the chuckles they can create.
Belinda I read your posts with awe sometimes...I see you as a matriarch, so much experience and wisdom and always there with advice both here and on other threads. May I ask your age? Really cheeky I know......also hope the transfusions do the job.

Enjoying the Poldark saga both on here and in TV!!!

Helen so good to have your cheery posts again...a bacon sandwich never did anybody any harm. One of my friends on chemo told me that she ate nothing but white bread and ham sandwiches for about a week......love peanut m & ms just back from my US trip where they do almond M & Ms brought some back but only one packet left now .
Hello to Lindy..don't be lonely..I read every day but don't always post.
Have a nice rest Chocolates....
Love to everyone else...been busy on here today which is good, but difficult to keep,up with.......
belinda
Member

Re: Bone mets - please join in

Hi Lindy, your post wasn't showing for a while, is now, but welcome and good to hear you are feeling so much better on the new chemo. I haven't tried the cold cap, I use hats and buffs and scarves. We are a supportive bunch, do keep in touch, we do go off on fun wild pursuits of fantasy sometimes on this thread as no doubt you have picked up 🙂 but it keeps us sane. X
JulieD
Community Champion

Re: Bone mets - please join in

Just a really quick one to say hello to Lindybutterfly, sorry you find yourself eligible but glad you've found us, it's a busy but supportive thread full of lovely slightly crazy women. You'll have a laugh as well as getting lots of support here. If you register for it there is a Live Chat session on Tuesday evenings 8.30-9.30.

 

Stresshead, great news!

 

Chocolates, make sure it is only two days going into work!

 

Everyone else have as good a weekend as possible xxxx

LemonDrizzle
Member

Re: Bone mets - please join in

Good grief, you've all been busy posting and it's taken a while for me to catch up.
Stresshead, that's fab news and gives us all hope.
Helen, eat what you want but are you sure you're not also with child like Marie? With all your husbands you can never be too sure!
Belinda, hope you're starting to feel stronger and have more energy.
Janette, good for you getting scan date changed. Shouldn't be a fight but glad you and hubby are uo for it.
Chocolates, enjoy your well deserved Easter holiday and after your days in school next week don't give it another thought until summer term starts.
I've probably missed some of you out so I'm sorry. Have a good day and get knitting!!!
LD x
belinda
Member

Re: Bone mets - please join in

Hi Nicky, glad you had a lovely time away. I will catch up with you when the new blood kicks in. 🙂
Now Helen, you have managed to make this dawn show down sound rather romantic. I have ordered up some Go Marie and Go Chocs Aprons and these will be on sale, very reasonably priced by the car boot and bouncy castle. Tickets for the hiring of chairs, colouring books and pens for the main event I will leave in your good hands.
X
Lindybutterfly
Member

Re: Bone mets - please join in

Hello everyone. I'm new here and not sure if I'm doing this right!
I was diagnosed with BC nearly 5 years ago and bony mets two years ago. Had paclitaxel for six months then was doing really well until a few weeks ago. I never truly recovered from the first chemo and gradually started feeling unwell since Xmas.
Was admitted as my liver was playing up and I could barely stand and am now on Epirubicin and Cyclophosphamide for 5/6 cycles and feel much better!
I've used the cold cap this time as hair loss was estimated at 50%. But hair already falling out after one session! Has anyone else tried the cold cap?
Anyway, it's nice to have found you all......it's been a very lonely process so far!
Best wishes
Lindy x
rosie53
Member

Re: Bone mets - please join in

Thanks Belinda, WOW Stresshead that is fantastic news!!!
hugs Janette x
nicky08
Community Champion

Re: Bone mets - please join in

Helen, I'm with you with the peanut M&Ms. Just the right darkness of chocolate with the bonus of a peanut in the middle! I'm not a big choccy fan but I do like these, even more than Flake which has been my fave for ever. My taste buds definitely changed since being on Cape then Tax chemo, also what perfumes etc I like. For years I've really disliked the smell of rose in perfume, although I love fresh roses, now I love it! Very odd.
Marie, how are your taste buds now you are with child? Any odd combinations? Other than the Cornish cream teas you're having.
NED is great SH and Belinda, I've never been NED either as bone mets always show up and never disappear, or so I've been told. However they of course can show as no activity or they are stable, which I'm always happy to hear.
Chocolates, hope you can recharge those batteries, it must be tough working so much when you are tired, I know it was bad enough when I worked part time when I first had my secondary dx. I don't think I could do it now though, too many aches and pains!
Hi to everyone else, hope you have a good weekend whether it's a duvet one or you are out and about.
Nicky x