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Bone mets - please join in

Carolyn52
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Re: Bone mets - please join in

Hiya Jeanette.
Wish I lived nearer you and would love to have gone to the day in July. Maybe you would get some info from it for me as it sounds really interesting.
I've just been to dawlish for a cream tea. Sat looking out over the sea with the sunshine and had a good girly catch up with a best buddy. Yawn ...sea air made me sleepy now but no doubt will do the cramp dance again tonight.
Hugs xx
rosie53
Member

Re: Bone mets - please join in

I'm also a tutti fruiti girl 😀 a bit chalky but nicer than the calcichew I use to have!

Are any ladies under the Christie hospital or near it? There is a secondary cancer day on the 2nd July, a good friend of mine usually goes but is away this year so will miss it but she said it a really good day and very helpful on lots of subjects we all question ie: diet, exercise, symptoms, herbal remedies. 

Hope everyone is okay today hugs Janette xxxx 

Marirose
Member

Re: Bone mets - please join in

Carolyn

You made me laugh I get up walk to the window look out then go back to bed so I am nuts too.

Also my Adcal are Tutti Fruti but they don't make me regular wish they did. I have them on repeat prescription from my gp when we discussed it we laughed at the Tutti Fruti flavour.

 

Love to all xxx

Carolyn52
Member

Re: Bone mets - please join in

Thank you marirose.
It's a funny feeling ..I worry more what it is really. I'm due for bone juice no 4 next week and fingers crossed it working. Love my Adcal tablets as they keep me regular and I've got tuitti fruiti flavour!
I get cramps at night and I have a special little dance routine ..hop around ..open curtains and look out of window for five minutes .neighbours must think I'm some sort of nut!
Hugs xx
Marirose
Member

Re: Bone mets - please join in

Hi Carolyn

Yes I get spasms one bit they were quite bad they made me wince out loud bit embarrassing when it happened in the supermarket. But fortunately it hasn't happened for a long time I do get spasms but not like that time. Maybe because I have been on Denosumab for a long time maybe it has helped and the Adcal calcium tablets it must be doing something. Right now I am getting night cramps very annoying to say the least.

 

Well love to all and good luck with scan results xxx

Carolyn52
Member

Re: Bone mets - please join in

Marirose. Do you sometimes get like spasms/ contractions in your pelvis. It's a funny feeling ..no pain but I have mentioned it to oncologist and she didn't make much comment and I sort of felt silly!.
I asked about using the electric massager and the physio said it was fine. It's very gentle .
Still waiting for my scan appointment but best of luck Jeanette with yours.
Hugs xx
rosie53
Member

Re: Bone mets - please join in

Thank you Marirose, Carolyn, I do sometimes get an hot water bottle which does help. Going to get a wheat bag and look at that massager from Argos. We sell Tens machines in the pharmacy I work at and my boss told me to bring one home and try it out but I read on the the box to consult with doctors before using if you have cancer so haven't tried it yet. 

CT went fine, got a vein on first attempt ....yippee!!! Just the anxious wait now for onc appt on the 28th for results ! 

Hugs Janette xxxx 

Marirose
Member

Re: Bone mets - please join in

PS Janette

A Wheat cushion warmed up in the microwave is good too. X

Marirose
Member

Re: Bone mets - please join in

Hi Janette

I too suffer with hip pains I have arthritis in both hips left more than right mets in pelvis both femurs and left tibia. My right hip always hurts but that is because of the muscle and because of that I was given Amitriptyline to help me sleep and relax the muscle I take it one hour before bed. I have taken it for years due to my MS. To get relief I use a cream called capsaicin it on prescription my GP at the time suffered with bad arthritis sadly she died from cancer. But Voltriol (if thats how i is spelt) is also good other than that I take paracetamol with a codeine usually one in the night if needed. But I find the physio I had from the MS team and then physio I had for my spine trouble helpful. So maybe some physiotherapy could help you too the onc arranged for me to have it for the slip disc and 'C' in the spine.

 

I don't know if this will help but best of luck  xxx

Carolyn52
Member

Re: Bone mets - please join in

Something i have found good is an electric massager. Mine is from Argos ..item 4434531 £39.99. but similar ones around. I sometimes have five minutes before bedtime!!
I was prescribed amitripian ( sorry about the spelling) took them for a week ...aagh was in moo moo land to lunchtime everyday . So they went in bin.
Hugs xx
Carolyn52
Member

Re: Bone mets - please join in

Hiya Jeanette.
Yes I had a hole in femur so had a femur pin put in last november to stop it breaking.My left hip is like honeycomb so my oncologist said. I had a crack in pelvis too. Waiting for my scan appointment to c if bone juice helping it all.
I can walk on a crutch around .
I try not to take painkillers and in fact haven't taken anything since xmas day!!
I have two hot water bottles at night and sort of prop up hip with a pillow. Manage sleeping ok and just try not to put too much weight on it all by day.
Hoping bone juice monthly is helping it all to strengthen . Can't drive though.
Hope this helps.
Jultz ..I could have gone upstairs to watch tv but stAyed down ..on Facebook most of night catching up. Good luck with h and p ..c.f.
Hugs everyone .xx
julzd
Member

Re: Bone mets - please join in

Hi carolyn my husband was watching golf too I was sent upstairs lol x x x
julzd
Member

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Hi janette good luck with your ct this morning julie x x x
rosie53
Member

Re: Bone mets - please join in

Morning ladies, hope you're all keeping well. I'm off for my CT this morning so it will be hunt the vein mission for them!  

Carolyn, do you mind me asking about your hip? I remember you saying that it is particularly bad in that area?  I'm sure I also read that you don't really take many painkillers?  How do you manage that?  I know my left hip is my most affected area and I'm never pain free, some days it's just an achy pain that I don't need painkillers for other days it really plays me up! Although I only ever take paracetamol and naproxen and maybe an amitriptyline at night when it's bad but that's also to help me sleep too. 

Really glad we've started the book club ladies, it's something different to focus on and talk about when we visit the forum isn't it instead of the big C getting all the attention!!

Hugs Janette xxxx 

Carolyn52
Member

Re: Bone mets - please join in

Well jultz you have done well to recover so quickly after all the chemo. Didn't get chance to watch anything on tv last night as hubs was watching golf all night. Bless.
Hello everyone .
Hugs xxx
julzd
Member

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I must say the TV is rubbish then two things on at once at nine typical home fires and undercover what to watch first big decision. X x
julzd
Member

Re: Bone mets - please join in

Thanks chocolates I will take your advice about the dropping my hours it's hard to make a decision when you feel rough from the chemo especially when you've had it for a long time I was starting to think the way I feel was becoming normal. Sharon I hope you get sorted soon then you can relax in knowing what the plan is good luck with the scan mines next week doesn't seem two mins since we had the last one ! X x
scratch
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Re: Bone mets - please join in

Hi chocolates.well I had my last docetaxol nearly two weeks ago .got ct tomorrow.and oncologist next week..I dont like the iodine injected in me but ct machine doesn't bother me..im up and down because its all in the air its unsettled me...anyway its sunny here today so going out somewhere dont even know where yet.❤ take care sharonx
Chocolates
Member

Re: Bone mets - please join in

Morning ladies, lovely day here down south.  Washing machine already on.  Have been really busy my last week of hols so just catching up now with the thread.  Julie, I'm so pleased your onc made the decision re chemo.  Docetaxol was awful for me so I know how much it affected you.  I've found h&p on its own very doable.  My suggestion re work would be to not rush into anything.  Gradually over the next few weeks you will become much stronger and if you cut back your hours it might be something you regret.  I work four days a week - mon, tues, thurs, fri.  My onc said no more working more than two days in a row without a rest.  He was right - it is perfect for me, with a bit of tweaking on treatment weeks.  I think what I'm trying to say is, once the fog of chemo clears you might feel differently so take a bit more time before making any decisions.

 

janette, how lovely to have your photo shoot - so glad you enjoyed it and like others have said - the pictures are such lovely memories.

 

carolyn, I'm so jealous of everything you are eating.  I'm trying to stick with my non chocolate diet, which has been difficult recently but is now back on track.  But, is very very difficult.

 

sharon - how are you doing - how are things going?

 

love to everyone else.  I'm going to try and enjoy the last day of my hols before back in tomorrow.  Not looking forward to the 6am alarm call.

 

hugs,

 

hxxx

Carolyn52
Member

Re: Bone mets - please join in

Hiya ladies.
Hope u have all enjoyed ur evening in pjs and something nice to eat and drink! I have eaten sooo much rubbish this last few days ..had a salad to put it right!! Ha ha.
Love the voice tonight ...Kevin deserved to win but the youngsters were all good too.
Britain's got talent ...that gorgeous cute little dog ..oh I want one. The sword bloke made me feel sick !!
Hope u all coping with aches and pains that this disease had chucked at us.
Hugs xxx
julzd
Member

Re: Bone mets - please join in

Sorry alokyer totally spelt your name wrong x x
julzd
Member

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True alyloker I don't even watch I work there I think it's an awful race hate it when the horses fall x x
alockyer
Member

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Yeah, good day for the bookies, not so good for the horses! Man Sad

julzd
Member

Re: Bone mets - please join in

Hi Sharon mine cane no where lol it was a good result for the bookies. Hope you enjoy your night too x x x
scratch
Member

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Hi jultz..my horse came second..glad you had a good day...xx enjoy your evening 😊 sharon
rosie53
Member

Re: Bone mets - please join in

Hi all, had a lovely day with my daughter at the photo shoot, was a bit weird I've never worn foundation or lots of eye make up I felt like a geisha girl 😀😀 but under the camera it's not as prominent. Had some lovely pics done really pleased with them. Had a lovely lunch and cocktails now home in my jammys.....perfect day!

Hugs Janette xxxx 

julzd
Member

Re: Bone mets - please join in

Hi janette hope you've had a lovely day and photo shoot. I've had a great day at work in the bookies with it being national worked from. 9 till 530 never stopped felt great bet I sleep tonight x x x
rosie53
Member

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Thanks ladies, I've let Natalie go first!! They have just poured us a glass of wine 😀bit early but it should help me relax more for the photos!
Janette xxx
Carolyn52
Member

Re: Bone mets - please join in

Hiya Jeanette .
Have a lovely day out ..Assume you will b getting make up put on before the shoot as part of the deal.
Sounds lovely and would b nice if you could scan a photo into here so we can all see the finished product.
Wet and drizzly here in Exeter too but I have a nice Belgian bun ready for my breakfast !
Hugs xx
Barton
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Hello, Janette. Enjoy your day in town with your daughter. I hate having my photo taken too, but think what memories you will have afterwards, every time you look at the photo!

 

Hugs. Barton.x

rosie53
Member

Re: Bone mets - please join in

Morning ladies, well it's looking wet and miserable here in Manchester today!  Having a mum and daughter photo shoot at 10 this morning, it's my mother's day gift from my wonderful daughter. Got to go with NO make up on.....yikes!!! So thought I would get up early to give face chance to fall into place 😀 really looking forward to it, we are off for lunch and cocktails when we it's done.....I'll be ready for a drink by then, hate posing for pics!

Hope you all have a lovely weekend Hugs Janette xxxx 

Carolyn52
Member

Re: Bone mets - please join in

Oh jultz..
How could u forget hair.
Let it grow ..let it grow..let it grow....

Just stuffed pizza but of course had to have the whirly Ice cream with sauce and chocky buttons as well !!
Im sure se of chemo and letrozole not listed is

online shopping and walking around £1 shops.
But a nice one.

Hugs ladies xxx
.
julzd
Member

Re: Bone mets - please join in

Ooh yes forgot about the hair ! And eyelashes x x
scratch
Member

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Jultz.yes sounds good.a nice balance and time in garden lovely and with hair❤ sharon
julzd
Member

Re: Bone mets - please join in

Hi yeah Sharon it's still the chemo ward for a few hours every three weeks bit of a nightmare but if it works I can cope with that. I think part time will probably be best x x
julzd
Member

Re: Bone mets - please join in

Thanks everyone that's my task for next week sort the money situation out. I will look into working part time think I might enjoy the summer and start taking an interest in the garden. X x
scratch
Member

Re: Bone mets - please join in

Jultz my neighbour has been on Herceptin perjeta for about eighteen months she went back to work full time but then left completely. She doing very well but gets very tired and still has to have bloods and hospital visits to chemo ward..so don't run back to too much.❤ sharon
scratch
Member

Re: Bone mets - please join in

Jultz glad the decision was taken from you..i felt like that last week.when had last docetaxol.pleased but not ecstatic especially as I cant have Herceptin perjeta as I'm er...i think they are very tiring and takes up hospital time too..maybe stick to small hours.then you get best of both worlds and if you go sick they can easily cover you..i get pip. And esa..also I got blue badge didn't want one but its come in handy free parking in town ..if you phone McMillan help Line they have a specialist team who advise you what to claim very helpful indeed..I did give up got lots of family and friends never get bored..frustrated with lack of energy but plenty to do..take care anything I can help with ask sharon❤
rosie53
Member

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Julzd, you can earn up to  £115 a week and work less then 16 hours. 

Janette xxxx 

rosie53
Member

Re: Bone mets - please join in

Carolyn, julzd,  there's a thread on PIP etc, you should get all the info on there. 

I get PIP as do quite a few ladies on the forum. 

Hugs Janette xxxx 

julzd
Member

Re: Bone mets - please join in

Sharon I'm the same amazon's my thing when I'm bored lol x x
scratch
Member

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Carolyn must be a side effect😊
scratch
Member

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Hi Carolyn yes I get that feeling.i look at Argos or other shops deals and decide yes I need that and go and get it ..haha.x
julzd
Member

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Hi carolyn I'm going to start looking into it all I just don't want to pack my job in. X x
Carolyn52
Member

Re: Bone mets - please join in

McDonalds happy meals are my favourite too. I like the little surprise toy !!
As you are classed as terminal can't you claim pip? Not sure about it but I expect a few ladies here will know more. I applied for it 12 weeks ago but haven't heard more.
After all the chemo ..surely that makes you eligible on health grounds.
Hugs xx
julzd
Member

Re: Bone mets - please join in

Carolyn enjoy pizza Hut my sons just went to McDonald's I've told him to get me a happy meal lol. Janette my boss is good too I have a 30 hour contract but letting me do 10 I dunno if I should keep the 30 or go part time I'll have to make my mind up soon they will need to get hours sorted it's been going on a year. I was thinking of 16 or 20 I think you can claim esa if you work part time but can't make more than 107 per week that's what I was told on chemo ward so dunno if I should look into that or not bother and just work more hours. X x
Carolyn52
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Hiya jultz
Can't believe u don't get a rest for good behaviour !
Assume its going to be on going treatment . It kept my friends liver Mets at bay for five years. My other friend is still on it ..about three/ four years I guess now and still works full time and enjoys a good life.
Just off to pizza hut with son and grandson to stuff my face on healthy food again...ha ha.
Hugs xx
rosie53
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Yes julzd it does, it makes me feel "normal" and gives some structure to my week, I am also really fortune to have an understanding boss who didn't have a problem with me reducing my hours and if I'm having a rough day she just packs me off home no problem. 

Carolyn, glad your happy with the lamp, I'm going on my "secret shopping trip" next week when hubby is at work 😀

Hugs Janette xxxx 

julzd
Member

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Hi carolyn no I'm there Tuesday lol. Glad your friends are doing well on it. By the time it gets dark I'll be in bed lucky if I'm up past nine these days ha. Hope you get your lamp on its a shame we can't post photos on here maybe we should sugest it in the secondary private group just nice random photos x x
Carolyn52
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Jultz.
Hope you are having a little rest before h and p though as you have really pushed yourself with the big guns chemo.
I have several friends that got h and p and they got a good quality of life with it with minimal se and HAIR !!!
Hugs to everyone else too. Waiting for it to get dark so I can put my new lamp on !! Sad so sad.
Xxxcx