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Bone mets - please join in

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Jultz
Understand that u r trying to get back to some sort of normal after all that chemo etc you had but the new regime should be easier.
Oh the brands of letrozole are a real old chestnut ..I've tried four in the 20 months and settled on "accord" which is now marked on my prescription ..it suits me best .
I'm hoping Jeanette is reading as we only mentioned you the other day in our pm and she too will dishing out punishment for staying away so long !!
Watching Glastonbury ..must fess up ..never heard of lots of them ..loved Kaiser chiefs though.
Xxx
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I also wanted to say I've missed you all and I'm back to stay this time !! Do you still take Letrazole Carolyn? I've been on 4 different brands and they all have different side effects im trying to work out which brand is the best. Some make my legs ache some give me a sore nose I think I've got it sorted so I'm going to ask chemist to order that certain one x x
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Haha Carolyn thought I might be in trouble. I was trying to feel normal going to work and trying to forget about it for a while but the dreaded scan came along lol. The summer house still doesn't get used and I'm still spending (wasting money ) haha.i still eat chocolate like its going out of fashion too. I'm so pleased katcyla has been approved I signed the petition I was worried for a while. X x x
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Well Jultz ...you are very naughty for not checking in for so long ..detention for you and no choc for a week punishment!!
Delighted that your scan is good and the h and p ( sounds like what I put on my bacon sandwich !!) Regime is working well for you and of course you have kadcyla option now it's been approved so you have the gold plan
Not much chance of loosing weight is there with letrozole and all the other hormone stuff but hey ho ...buy a bigger size and let it all hang out !!
Don't stay away so long next time ..really missed you ..hope u r enjoying the summer house and its not being used as a dumping ground for all the handbags,shoe collections and bargains we buy and hide !!
👍👍👍xx
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Hi Ladies
I haven't been on for a while just to let you all know had my six month scan yesterday and treatments are still working well. So I can carry on having Herceptain and Perjeta thank God I was stressed to bits. I hope you are all doing well mind I am piling the weight in with the medication I need to get it sorted. Love julie x x x x x
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Best wishes and hugsx
Moijanxx
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hi

thanks for the good wishes carolyn,hayeswain ,ff,rosie53,and moijan,it was such a relief as i was worried sick ,but nothing unusual there as i do worry over everything ,drive my family mad ,they say if i wasn't worrying i would be dead.

the onco put me on hormone tablets ,explained all the side effects you may get but he said you will possibly feel as though you are going through the change again with hot flushes etc so dont worry about them ,well i never had symptoms before when i went through it so hope he is correct as wont have symptoms at all but will see,and willing to try anything ,

quite cool here today but very pleasant ,hope you are all enjoying the dry weather.

renee

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Hello Renee
Whoop whoop ..super news for you so now enjoy the weekend and now it's cooler ..some sleep .
☺☺xx
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Hi Renee

Great to hear good news. I had a rash just after my diagnosis no pain no itch just looked very raw . It turned out to be shingles and gp said it was probably the stress I was going through anyway it cleared up and fingers crossed has not come back . Have a lovely weekend all. I am off to Sainsburys😄
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Renee, Glad your new oncologist has soothed your mind!! I'm surprised we aren't all super crazy from the stress of all this!!  You made it through and I give you permission for a treat. What will you choose?!? FF

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Yes Jazmi, love and hugsxx

M

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Oh Renee, that is the best news! Really pleased for you.
Hugs Janette xxx
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To every lady on here that has helped me over my worries,i had amy appointment today with new oncologist and he put my mind at rest ,

he told me he was not unduly bothred about the rash on my breast ,but he was not sure what it was so wants me to keep an eye on it ,it looks like shingles he said but no pain or itching so not that ,but will do as he says and watch it .

he is going to think about radio therapy for my breast if it continues to weep but not unduly bothered there either as not a great lot ,so i shall see him in 6 weeks time to see how things are going

my bloods were fine ,plus my heart scan was perfect ,my ct scan showed liver and lungs had shrunk slightly ,breast was stable so all in all a good result and a relief for me,,, i stay on herceptin and perjeta until they no longer work and of course no one knows how long that will be ,but he had added a hormone to my meds ,but again have to get in touch if i have bad side effects,he is trying the hormone but will remove it if it doesnt do what he thinks it should or if side effects get too much to bear so he could not be any fairer with me,so thanks again to all you ladies that helped me over the past week or so as i was a mess .

Reneexxxxxx 

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Thank You for that lovely poem, emotions mirroring my own - although I never thought to have anniversary cake (I made it to 12 years) - I may start the tradition now - with a glass of wine maybe!

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Beautiful poem.
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Good luck today Renee, will be thinking about you!
Jellytot......beautiful poem!
Hugs Janette xxxx
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Well done Jellytot...... hope your feeling a little betterxxx
Mx
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Renee, Good luck tomorrow!! The scanxiety is awful. I don't know how we do it! I always say bc there is no choice but checking out.

 

Jellytot, I hope writing your lovely poem has helped you release some anxiety.

 

Remade, Happy to see you posting. My knees hurt like crazy and hips slightly! I think it's the meds.

 

Puppy love is t he best! FF

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Thank you for the lovely comments on my poem, it felt very cathartic to get it all out. Lots of love xx
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Hi Mo 

thanks so much and will let you know the results as soon as i am able .

thanks again 

renee

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Renee.........best of luck for tomorrow! We're all rooting for you! Don't forget that list of points.

 

Jellytot.......an amazing poem! Very wise. You didn't make your magic 5, and I didn't make my magic 14! You are right that none of us know what's to come. Some of your friends who have celebrated their 5 years may need your wisdom in a few years time. You will be well placed to help and give support. And there are other health bear traps all of which need solid friends. Thanks for giving  us your poem! It made me think!

 

Well, we have all cooled down today. I have a lovely CHILLY breeze wafting in at my window here. Take care everyone,

 

mo         xxxxxxxxxxxxxxxxxx

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hi carolyn 

thanks for best wishes ,appreciated .

i have been kept busy today as my son visited and has just gone home so the company helped .

what a lovely poem from Jellytot amazing i thought and should be framed as you said .

heard my friends hubby has to go for bone scan, mri scan ,and biopsies all need doing in the next three weeks specialist said so keeping fingers and anything else that will cross well and truly crossed..

much cooler today plus had a few showers and the odd rumble of thunder,but a more pleasant feeling all round.

take care 

renee

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Hello Renee
Just popping in to wish you all the best hugs from your cyber friends here for good results tomorrow ...it's always an anxious time but we all do the scan anxiety diet which is lots of visits to the loo !! xxx
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Thanks Carolyn for your kind reply, I will try the rub ins. I'm glad too that it is not so hot today, got up, put shorts on, realised my mistake, went back up and put jeans on.

Jellytot, lovely poem, thanks for that.

hugs xxxx

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Hi Jellytot,
What a beautiful poem. Thanks it helped a lot to revive my spirit. It is not for us to worry how long we live. We are alive today and shall be in the years to come. I enjoy each day and know there will many more such days. Love and hugs
Srilata
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hi jellytot,

what a fantastic poem and given me a better look at life ,just at the correct time as i have incurable breast cancer with secondary in liver and lung ,plus nodes ,i am going tomorrow for my ct scan results plus heart scan and bloods ,this poem has cheered me up no end as i am dreading seeing the oncologist for the results ,

thank you and take care.

reneex

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That's so lovely Jellytot - I hope it has helped you writing it. A bit of advice though - forget the candles, have the cake with a glass of champagne 😉🍾🍰 That will show the bloody 'C' who's boss.

Hugs to you and you know we are here holding your hand.

Nicky x

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Hello ramade
Welcome back ..I know exactly what you are feeling as I have pain in the same spots ..some days better some worst and I never know either whether its progress, letrozole or denosumab either !!
I try to avoid painkillers and rub in deep heat type stuff as much as possible and use a plug in electric massager or hot water bottle at night when I'm achy .
I think denosumab features in achy pain ..I get more pain a few days after and for some reason a few days before its due ...but that's just me ..everyone is different .
Hope you are comfy today ..it's cooler here in Devon and sooo nice ..so I'm not a sweaty betty today ladies ..in fact forehead is bone dry and I have cold feet in the flip flops !!
Xxx
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Jellytot ..what a lovely poem ..and very thoughtfully written ..I think you should get it printed in a scroll type picture and frame it ..read it daily to give your self a motto everyday when you feel that the world is against you!! Xxx
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Hello girls, thank you for your lovely hugs and advice. I just wrote this poem:

 

No More Cake


5 years ago, it's oh so clear,
In the waiting room, the rising fear.
Walking into that stuffy room,
Increasing dread, impending doom.
I'm so sorry, the surgeon mumbled,
And my whole life began to crumble.

 

I made it though the treatment plan,
Got married to a wonderful man.
I'd been given a reprieve,
We'd picked our kids' names; Alfie, Niamh.

 

Every year upon this date,
I'd put a cake upon a plate,
Adding candles one by one,
Blowing them out, reflecting, another year done.
Another year of being me,
Another year of cancer-free.

 

In the blink of an eye, that all has changed,
My whole future rearranged.
Today there's no cake upon a plate,
There's no 5 years to celebrate.

 

My cancer is back, this time it's worse,
It's like I have some kind of curse.
Stage 4 (or mets) means there's no cure,
So a new plan I must endure.
Treat it for as long as they are able,
Keep it at bay, keep me stable.

 

The darkest thoughts inside my head,
I'd written myself off, I was already dead.
The oncologist dilutes my fears,
He says "you could have years and years".

There it is, the bubble of hope,
Something to cling on to, to help me cope.


So currently I'm being fried,
With radiotherapy to keep me alive.
They'll take my ovaries, an oophorectomy.
Will I feel less womanly, will I still be me?

 

Then move on to new hormone pills,
I'm hoping the side effects won't make me ill.
Constant monitoring, blood checking, scans,
Are all a part of my new plan.

 

As I find my new normal and readjust,
Forgive me, it'll take time to get it sussed.
"Eat Life" a wise friend once said,
I'll seize the now, for no-one knows what lies ahead.
I may have not made the magic five,
But I'm bloody thankful I'm alive.

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Hello all of you, I haven't posted in a while as I have been going downhill fast emotionally, I feel ashamed to say that. Bone pain has got so bad now in hips, lower back, I don't know whether it's the everolimus chemotherapy or the denosumab injections, anything I can take that would help????

thanks

ramade

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Morning ..... Nicky thats brilliant news, well done you :).  Janette I hope your new addition to the family gives you lots of fun, dogs are great company aren't they and always ready for a cuddle :).

 

Jelly Tot I really feel for you,  I understand you feeling low I really do, but I can promise you gradually it will get easier and you will re booking your holiday again ! (and many more)  🙂

 

Maria xx

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Hi there Nicky.....

yes my hands were burning touching the car insde after 

my blood test today. i am due chemo....tomorrow. Glad yours went well.

xx

Moijan💚💚💚

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Hi ladies. When I got in my car after it had been parked for 2 hours in the hospital car park the temperature read 41C! Ouch. Way too warm for me and for most of us.  Luckily the chemo ward was fairly cool with plenty of fans and a breeze through the window - its on the 5th floor so if theres any breeze going it will get it.  Chemo is going OK, thanks for asking Betty, and my scan results yesterday showed it is having a good effect on my pesky liver met (that grew on the last, unsuccessful treatment). It has shrunk but I'm not sure by how much until I get the report next week, it certainly looked, and measured, smaller on the scan itself on my onc's pc when I saw him yesterday. Everything else seems to be stable as well but I'll wait until I get the full low down before broadcasting it everywhere.

I've managed my daily lolly, currently on strawberry splits, and just about manage to eat it before the sun melts it.  Hoping for some cooler weather, especially at night.

Nicky x

ps Lovely to hear about Heidi, Janette, hope she is keeping cool as well!

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Hello Nicky and Jeanette
Glad u popped in as everyone is fed up with me ...
Jeanette ..you will find having a doggy about a joy as you just have to walk them and get up at silly o clock but somehow you get so much back in love from them.
Nicky
Glad u are coping well with the new chemo ..and enjoying the heat ..it's supposed to be changing by tomorrow.
Phew missed my afternoon nap as I've just got in from the funeral ...very short and sweet though ...bless at 94 ..not many still living to attend !
Sweaty betty xxx☺
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Afternoon ladies, sorry for the absence (I'm sure I'll get detention from Carolyn!) Had family stuff going on plus it's been sooooo hot it leaves you feeling so tired......er not that I'm complaining though, we have to appreciate the sunshine while it's here!
Jellytot, I'm really sorry to hear that you are feeling down at the moment, it's totally understandable though, don't beat yourself up over, it's ok to feel down and angry with this disease, but you will feel stronger and more positive again soon.
Well we have a new addition to the family, Heidi our beautiful cavachon, so we are learning to adapt to having a dog around, finding it both scarey and exciting all at the same time (certainly taking my mind off the big C)
Stay cool ladies. Hugs Janette xxxxx
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To Carolyn and all other sweaty Betty's - I hope you are coping with this heat. It's a scorcher here again today in Hampshire, a bit cooler last night but it's picked up very quickly and now it's right back up to scorchio! It's probably the only day I've ever looked forward to having the cold cap - sat here with it on right now and keeping very cool ha ha.

Hi to all newcomers, I've not been posting much over the past week or so, but have been reading like Marie-Louise. I see our own sweaty Betty has welcomed you though so all is good!

Nicky x

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Hi jellytot

I just wanted to say that it's no wonder you are feeling low at the moment. You have been thrust into the world of secondaries which has been a shock as it is for all of us. At a time when you were hoping to hit that 5 year milestone (from primary BC) you find yourself not only having to deal with loads of hospital appointments but also the fact that you can't have children (apologies if I have that wrong but I'm sure it was you that said this). I was 6 months off my 5 year ' anniversary' and my oncologist had actually discharged me from her care as I was doing so well - it was the surgeon's appointment and mammogram 6 months after, and the last one I was due to have, that found my mets. So, from expecting to be released from all those appointments you find yourself having even more than most as you've had rads right from the start. It's so difficult when you see your fellow 'primary' friends being able to move on and it's no wonder you find it difficult to respond to their messages. Like FF I didn't use a forum or similar during primary BC (social media itself hadn't even started ha ha) but this forum has been such a lifeline to me and all of us. We can speak our minds, share our fears, voice our disappointments and generally have a good old moan when we need to and we know we will be understood - unlike with people who are not going through this. Take time to adjust, build in some special treats for days when you are not having to be at appointments and it's absolutely fine to feel sorry for yourself - we all do at times. Generally look after yourself, you will find a way of dealing with this, as we all have, it's not easy but things such as feeling lucky to be still here can and do happen. I have found over the years of having secondary BC I have become more selfish (on purpose!) as I choose to do the things that I want to do, not what everyone else wants me to do, and I do say 'no' to things I really can't be bothered with. For me it's spending time with my family and also those friends that I know are true friends, silly other events or occasions are really not important to me.  Sorry, this is me rambling on about what I think but I'm trying to say take time to accept what is happening and do what you want to do, not what others think you should do. That way you will hopefully find a way through this low point.

Nicky x 

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hi carolyn ,

thanks for the tip about the dog's paws,funnily enough it has been on radio nottingham about the heat and how it effects your pets and this was one thing mentioned.

mia usually goes out 6 am until 7 am and 2 30 until 4pm she is taken by a gent my hubby used to work with and when hubby died he asked if him and his wife could do the dog walking,so he walked jaz my german shepherd i had at that time ,she then passed away with cancer and my son's immediately brought me mia the following day so never without a pet in the home,,,since then arthurs wife has also died from cancer and he is being treat for the disease in his prostrate but still never misses taking mia out so i am very grateful for that .

just starting to feel the hot sun now so going to move into the shade once more .

take care 

renee

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Morning Renee
Phew ..a scorcher again but I'm going to show off now ..went to bed at ten last night ..fan on and a glass of tonic water ..slept to 7.30pm this morning ! Very very unusual but feel better. No wee trips, buzzing flies !!
Just a warning to dog owners ..vets inundated with burnt paws after being walked on hot pavements ...went to sons last night ..their dog had his head in the freezer and was keeping cool ..he's also taken over ownership of the fan too !!
Hugs from sweaty betty xxx☺☺
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morning carolyn,

not much better in bed last night ,but hey we are here and that'sthe main thing

you hit the nail on the head  exactly about people talking to the pusher ,annoy me so much as i will sit there and hear them ask ,why is she in the chair?the best one was ,does she have dementia,must admit i swore when i answered the stupid woman and both shocked myself and my son,but it did hurt me all that day ,we were in woolacombe and looking forward to a lovely day ,spoilt by an ignorant woman,but i have to also think of access etc when thinking of the property,but will get somewhere sometime no doubt ,just wish sons would go away and forget about me for two weeks but working on that and i will win in the end as working on a plan .

hope you are ok as you appear to keep this part of the site going with your cheerful mood and imagine all concerned look forward to reading your posts .

take care 

renee.

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Suze, I always say you never know what's going to happen and what you will have to do in life. I'm thankful you are here to celebrate something!! Celebrating is the important part! FF

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I have one thing to share. Reports finally finished!!

Jellytot, I had big plans to celebrate ten years cancer free on my 69th birthday. Now I've decided to celebrate just being here. Take care. X

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Hiya Renee
I understand the wheelchair as when I had my hip op ..went out ..twice in it ..hated the way people leaned over and shouted and talked slowly .. assumed as I was in a chair ...was deaf and stupid as well !! People also talk to the pusher and ignore the one in the chair too ...
It seems a bit cooler tonight ...hope we all sleep better so we are not a load of twitchy snappy ladies tomorrow ..leave the grumpy bit to the men !!
Hugs xxc
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hi again carolyn ,

i would love to come down to lee but doubtful i think ,all kinds of things to consider when in a wheelchair,but one can live in hope so never saay never .

so a funeral bright and colourful ,i prefer that type but my sons see things differently so have had to write down my wishes ,i had a humanist funeral for my hubby and want the same also,

,so hope it isn't too hot for you ,

i am on here later as trying to keep my mind away from this rash ,but friday will soon be here and i will know one way or the other,

thanks for your company.

renee 

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Awwwww Jellytot, I'm sorry you feel separated from your friends, but glad you found us. With my primary I never felt the need for support, but when secondaries hit I was a frantic mess! I searched the internet for info and found this forum. Hang in there we have your back. 

 

Sweaty ladies, When we first moved here we didn't have AC. We were in our house about 15 years b4 we got our AC downstairs. It was about 20 tears b4 we got one upstairs in our room. I don't know how we stood it. Today it's 86F here and humidity is 40 with a slight breeze. Windows are open no fans or AC.! It's beautiful!! FF

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Hello Renee
Living here sometimes don't appreciate how lucky we are .. hope u get to Lee bay soon whilst the weather is so nice.
Forecast is hotter tomorrow and I have a funeral to go to but dress code is bright and colourful so I have a nice cool dress to wear.
Temperature here : 75f but think that is modest ..it seems hotter .
Sweaty betty signing off xxxx
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Hi there Jellytot.

 

am so sorry you are feeling low and quite understand why. You had a peer group to share stuff with and now they all seem ok, so you feel you havent a lot in common. Xx

 

this weather IS too much for us and hospital visits are an intrusion...sorry you had to cancel your holiday. i nderstand that too.. have to attend two weeks out of every three for my Eribulin and have a oh who isnt really holiday orientated.xx have managed to snatch three nights away with him on Sunday, just for a change of scenery..have not had a holiday since three days in October! So I do understand.

 

we never know what lies ahead, do we? Your friends all seem to be hunky dory, hopefully that will continue, but most of us here are all adjusting to changes every now and then.....so even if we seem very ok with it, we arent always and you cam share with us.....we do understand xxx

Moijanxx 💚💚💚

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Hi jellytot83, 

 

I'm really sorry you're going through this, it must be so hard watching that milestone approach, I'm not suprised you're feeling low. 

 

You're doing the right thing by reaching out, I hope being part of the Forum community is helping. 

 

Take care, 

 

Becca at Breast Cancer Care.