Bone mets - please join in

[julzd]

It's leathul going in those shops never came out yet spending under a fiva haha x x

[Carolyn52]

Jultz
Funny you should say that ..went twice last week as its near to me ...spent £23 one day and £16 yesterday ! How .....do i do it ?
Xxxx

[julzd]

Hi janette hope your doing ok I spend a fortune in pound land pick up all sorts of stuff I don't need haha x x

[rosie53]

Hahaha carolyn, I'm off to pound world for some shampoo tomorrow 😀👍💆
Hugs Janette xxx

[julzd]

I'm going to stick in this week carolyn I've just had a big piece of cheese cake couldn't resist I'm starting properly tomorrow x x

[Carolyn52]

I'm sure the weight will fall off in one lump this week !! Your metabolism might b a bit slow after steroids.
Anything that tastes nice is a no no for me this week !!! Not buying bigger knickers.🍎🍏🍊🍋

[julzd]

I joined slimming world two weeks ago I've ate more since joining I got weighed last week stayed the same get weighed again tomorrow if I make it got scan at 910. Good luck to you for your scan tomorrow ❤❤ for they live a few hours away ? X x

[Carolyn52]

Hiya jultz
Yes we've got soccer aid on too...hubs says England team playing better than the proper one did last week!!
Glad u got shampoo ..I've got mine coming later this week.
Just done a four hour round trip to take grandson back home for school tomorrow. Shall miss him but not McDonalds and kfc !!
Banana smoothes and salads for me next week. Ha ha .

[julzd]

Carolyn that's my plan lol. I got that shampoo you suggested delivered today from amazon just got in from work I've had a lovely bath and washed my hair it feels so soft doesn't look as fluffy too so hopefully this works. I'm watching soccer Aid I love it but hate all the sad stories x x

[Carolyn52]

Jultz ...
I have visions of you sat in the Sumner house on big Indian cushions ..doing yoga / meditation and with those incense sticks burning and a turban on !!!
Jeanette
Accidently used my grandsons shampoo in shower this morning ..cheapey children's shampoo from pound shop ..guess what no itchy scalp and no moulting when drying it either ......

[HelenAquarius]

Spud girl.. Thanks for the turban website... They are great! Definitely going to try some if needed 🙂

Helen xxx

[Carolyn52]

Tiger
Sorry read the fasting article too ..I think its going to be hard to do after chemo ..but if it helps maybe it's worth a shot . I always ate loads afterwards to settle tummy !!

[Carolyn52]

Hiya tiger.
Welcome ..all the hormone treatments carry se and most times they settle down or you get used to living with them.
I took tamox in 2004 after primary dx for two years and only remember hot flushes and a bit of weight gain but its a powerful little pill!
Once you have had the scan results you will have a clearer idea.
It's a very hard time but remember this website is real people with real symptoms and there is alwAys someone here that can support you.
Keep in touch ....
Xxxx

[vercors]

Hi Tiger, 

I have been on this thread for almost 5 years ,but I am more of a lurker. Pain can be a sign of healing. May I ask if you have been put on any bone strengthener? My initial mets were on a rib. After my first coupe of strengthener infusions, I had a burning sensation in the ribs. At the next scan thet rib mets had gone. Nowadays my bone strengthener are in tablet format, but there are also injection.

not read the fasting article with chemo. It is not the first time i hear about this, but I can't comment. 

Have a great Sunday everyone. 

[Spudgirl]

Hi Helen

i know you want to keep your hair for the wedding,but if you are concerned with the tingly feeling and want a Plan B, have you looked at Suburban Turban? (I hope I'm allowed to write the name here.   She is a milliner and does some gorgeous headwear, including bridal. xxxx

[Tiger14]

Hello again! I also wanted to ask another question and forgot to add it (sorry about that) - I read the article in the Guardian about the possibility that fasting before chemo can help limit some of the side effects - has anyone tried this and if so, do you think it helped? It's obviously something I'd talk to my dr about first but just wondered if anyone had any thoughts. Thanks so much ladies xx

[Tiger14]

Hello, I'm back for another peek at all of your chats. Thanks again to those who sent such inspiring messages. I hope I get the courage (and the IT know how!) to find a way to reply to you all individually. Please may I ask for some help with a question I have about Tamoxifen? I've been advised that at the moment it looks as though I only have mets in bone, and I know there are some in my ribs. I've been taking Tamoxifen for 3 weeks now. Over the last week I've had increasing pain in my ribs. Some pain was there on and off and localised before but now feels like a ring of pain/burning all round my middle, with patches that hurt to touch. I don't feel breathless but if I take a deeper breath than normal or cough it triggers the pain. I've seen some info about 'tumour flare' but don't really know what that means so I wondered if it could be that. I've also noticed this week that my voice has become croaky/deeper and in the morning especially my mouth is incredibly dry. A nurse has listened to my chest and says it sounds clear and my temperature is normal. Does anyone know if this could be side effects of the Tamoxifen? I'm trying not to think that the mets have spread to my lungs but I'm really scared in case they have. I can't start chemo until I've had a bone biopsy and the results are back (being done Wednesday) and I just don't know how quickly this can spread. I'd be really grateful if anyone could let me know if they had similar issues when they started on Tamoxifen. Thanks everyone for reading such a long (and depressing) message. Sending lots of love to you all xx

[Blanna]

Hi Helen, I use hair concealer and thickening fibers, I have very thin hair after having thick hair that all fell out the first time I had chemo five years ago. This really boosts my confidence and even hides it under harsh lights, I often get compliments on my hair when I've used them. Anyhow I do hope it does slow right down and its not extreme loss xxxxxx

[Rose47]

Hi Helen,

I was told that sometimes thick hair can stop the cold cap getting through to the scalp so there will be hair loss  to begin with.  Hopefully it will slow down after the initial shedding.  Fingers crossed for you xxxx

[Carolyn52]

Oh Helen. What a shame about the hair..maybe it's just a splurge and it will stop again. The tingling head though is a bad sign.
Did u get yr rings in the lanes in Brighton ? Have been there several times. The poem is lovely and hair or no hair ..I'm sure you will have a really lovely day.
Xxxx

[HelenAquarius]

Hi all... My hair is coming out in handfuls - 5 weeks to the wedding, got that tingling scalp feeling. Have put a thick elasticated cotton hair band on today to stop me fiddling. I'll be gutted if I do the cold cap and it comes out. 

However we are in Brighton today and have bought our wedding rings :-))) Didn't do the engagement ring thing.. Just a wedding ring each. We are having a humanist wedding.. Non-religious and all the words to the ceremony we have written with the help of a close friend.  It's great. Just hope not too much hair will fall out!

meant to be really sunny tomorrow eve one !!

My friend just wrote this poem.. I love it!

********

,Silliness' by Chris Hartnell

More often than not

It's a good thing

To let a little silliness add some colour to the day;

Being silly isn't silly -

It says,

"Look, I'm happy to let down my guard

And let you in",

Forget appearances

And power games

For just a little while,

And I’ll trust

You won’t judge

Anything I do or say,

Nor me you -

Just dance with me,

There are no rules,

It is simply a matter of the meeting of hearts and minds in all simplicity,

And letting laugher in -

The wonderful leveller of all things.

********

happy,silly weekends all

helen xxxxx

[Carolyn52]

My hubs is the gardener ..I don't know a daisy from a dandelion ..so the gardening thread on private forum is safe from me ! Also the arts thread ...never good with sticky back plastic and blue Peter !!!
My hair has been worse with simple too ...ugh .
Bought some Argan oil and back to normal stuff until I get the nioxin this week !!

[rosie53]

Carolyn, I agree with you on the Simple shampoo, it also made my scalp dry and itchy and my hair lank. Gone back on Herbal Essence. To be honest the only time iv noticed that I'm multing is when iv just washed my hair, as I comb it through I lose quite a bit then. 

Well my and hubby have spent all morning in the garden planting bedding plants, that is the first time I have done any gardening since my dx over 2 yrs ago, having Heidi has made me realise I am capable of doing more and that I really don't need to wrap myself up in cotton wool!!

Hope your all enjoying the sun.....I'm off for some well deserved retail therapy 😀

Hugs Janette xxxx 

[Carolyn52]

Wondered how the summer house was coming along ...sounds lovely with electric too.
I was either buying taps online or a trip to b and q ...can't stand going there and always get a "achy hip" if hubby suggests it !! 😛😛😛
Think its a man thing. Same as screwfix ..it's like Argos for men isn't it!!

[julzd]

I agree a tap is a tap. I've been buying stuff to put in the summer house that's been nice got all indian hippy type stuff it will look lovely once it gets sorted. We are getting some electric put in it next week so il get in and do it out x x

[Carolyn52]

Haha Jultz

Done my tap shopping online now  and a nice ittle man in a van will deliver them on Tuesday ..my kind of shopping. .....boring  .... a tap is a tap ..as long as it switches on and off ..and doesnt go drip drip drip all day  ...dont really care much. 

Now for some fun shopping ..............

Hugs xxxx

[julzd]

Haha carolyn I'm laughing we've been bathroom shopping and my husbands been asking me about taps for the last two weeks I'm sick to death of trailing around the shops not the kind of shopping I like !! X x

[Carolyn52]

As u know ..I love online shopping but got a sooo boring one to do ..New kitchen taps ..100s of the blitters to choose from ....phew think I might have to reward myself something else after all this tap shopping !
Hugs xx

[Carolyn52]

Jultz.
I didn't seem to get hair thinning on letrozole for the first three months or so ..I'm eight months now and its getting more .
How's the chillo pillow ?is it helping ?
Xxx

[Carolyn52]

I think that's what I'm getting ..the starter kit sample. It's expensive but worth it if it stops hair loss !! I don't wear black tops anymore as I can look like I'm carrying a dead cat on my shoulders !!
I found using "simple" shampoo dried my hair and made my scalp itch although lots of other ladies here found it a cheaper option.
Have a nice weekend xxxx

[julzd]

Sharon have a lovely time it's nice to get a break from everyone now and again x x

[julzd]

Just looked on amazon a lot of its out of stock I've managed to find a starter kit for 12.95 instead of 30 pound x x

[julzd]

Hi ladies I'm think il try this shampoo instead of the horse one I start letrazole next week I'm gutted because my hairs just came in hope it doesn't thin out straight away x x

[Carolyn52]

Hiya Jeanette
My hairdresser is dropping me round a sample this week ...it's three bottles ..shampoo conditioner and mask I think. Then I will order it from her. She says she is selling so much of it so it should help ...
Lyndyloo
How nice to hear from you and thanks for the reply.
I want my old life back ...killer heels and handbags not expensive shampoos and vitamin pills !!😀😀😀😀😀

[rosie53]

Hi ladies, just been looking on line at nioxin shampoo, does anyone know which one to get? There is 1 2 3???
Hugs janette xx

[LYNDYLOO]

Morning Carolyn
Just thought I would let you know I used Nioxin for about 1 year when I was taking letrozole. First lot I bought at hairdressers then after that I bought it on line at Amazon it was a lot cheaper. I found it worked quite well. Made hair look thicker. My hair has been a lot better since change of treatment to E/E. Hope everyone is doing OK. Have a good weekend. Hugs Linda

[scratch]

Hi jultz no were escaping on our own...i love them all too bits but need a rest..let you know if I swim.hahaha...take care Sharon..xx

[scratch]

Hi Carolyn .ok weather ordered Il be on my way next week..yes the hair stuff is worth a try if your hairdressers say its good..god knows what's in these meds..my hospital friend has bought a wig as the letrozole has taken the back of her hair away from the ears down😁.xxtakecare sharonxxx

[Carolyn52]

I've just had my hair cut and my hairdresser assures me I have no bald spots !!
She also says that a lot of her clients buy Nioxin from her and swear by it promoting good thick quick growing hair.
So guess what I'm buying ....yes I am.
Think I'm obsessed at the moment ..so excuse me rattling on .....
Hugs xxx

[Carolyn52]

Thank you Marion ..I've just read it and very interesting .I read all the links too.
It seems herceptin was the life saver for this lady .
Once again thank you.
Hugs xxx

[MarionP]

Happy weekend everyone!

Interesting take on surviving chemo in the Guardian - http://www.theguardian.com/society/2016/jun/03/how-to-get-through-chemotherapy-decca-aitkenhead-canc...

[Carolyn52]

Barton ..it's just not funny all these side effects is it?? I've never had hairy legs before but I'm beginning to look like a monkey !! Meanwhile my parting on my head is getting wider every week !!! And I'm plucking more hairs from face.
Werewolf and monkeys ..we are going to frighten everyone to death at m and s cafe next week.
Hugs xxx

[Barton]

Hello, Carolyn, your comment about strange hair behaviour had my laughing to myself. My head hair has thinned a lot after all my assorted treatments, including Cape, but I have hair growing (I kid you not) on the bottom (nearest hand) sections of both index fingers! Perhaps I'm turning into a Werewolf! All other fingers are fine, but having hairy index fingers is a little weird!

Hugs. Barton.x

[julzd]

Sharon have a lovely time in Torquay enjoy the swimming let me know how it goes are you taking the grandkids ? X x

[Carolyn52]

Thanks Nicky for all the comments. I will also say to the other ladies here that most times bone Mets don't cause pain unless they press on a nerve or something. I have extensive Mets to left hip and haven't took a pain killer since xmas day ( busy family day) .most nights I use a hot water bottle on hip but now it's summer don't bother.
That's the trouble they are silent little tikes and sometimes they r not found until they have got nice and cosy in the bones !!! They love hips so never ignore any pain or discomfort there.
Xxxx☺☺☺

[Carolyn52]

Hiya Sharon.
Well I hope u enjoy Torquay next week ..I have ordered some sunshine for you as well.
The indoor pool will b nice to get you back into fitness and help those nasty bones relax a bit too.
I'm hoping that if my scan is ok to start going as the pool is only five minutes from my house BUT climbing down steps will b a prob on my hip and there is no way I'm being lowered in by the crane thingy they have for disabled/ old people.I still have some pride ..🏊🏊🏊🏊

[scratch]

Jultz density scan easy no needles just lay down for about twenty mins and machine goes over you .xx

[scratch]

Hi jultz the cream I had fir nose was called naseptin nasal cream....im going away next week to Torquay and there is an indoor pool.im taking my cozzie...and hope to swim as I still havnt been here...glad hair growing for you..love sharonx

[Carolyn52]

Hiya everyone.
Jultz ..can't remember about the chillo pillow but I think u need to change the water quite often as stagnic water gets smelly !!
Hope it does the job as a lot of ladies here have really got on well with it. U might need to use it on yr feet or back as well to keep cool.
The density scan is a doddle ..they just move the scanner over your hip I think if I remember correctly but things change since I had primary in 2004!!
How nice your daughter being in Mexico on hol..remember back a few years back when we went away on a whim .
Well weekend starts soon ladies ..hope u all have plans xx

[daisyjane181]

Thanks Nicky. Going to get back on track today.  Think yesterday was a low day but today will be better.  Xx