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Bone mets - please join in

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Re: Bone mets - please join in

Hahaha meant to put "can't" remember the last time I had a chocolate orange!
Xx
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Hi Carolyn, aww I remember the last time I had a Terrys chocolate orange! Love them, but like you I could not crack one open without finishing the lot! Strictly was good last night wasn't it, I think Ed Balls day's are numbered! Oohh I enjoyed my Dairy Milk are cheeky glass.....or 2 of wine 😆 got a Crunchie cooling in the fridge for tonight's results!
Hugs Janette xxx
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Hello FF
Pip is a personal allowance you can claim for various needs but if you have terminal dx it can be claimed.
With the allowance ..you can have it all as cash for extras that we might need or use it to get a car by paying a monthly rental fee for it.
The amount varies but is not means tested for any other income we might receive.I think it gets awarded for a three year period and then I think you have to reclaim. There is a upper age limit on it ..64 .I think.
Sorry might not have my facts 100% accurate but that's the basic info.
Sorry we forget u r across the pond and I don't expect you have terrys chocolate orange there either ..it might sound healthy but it's basically orange flavour choc in segments made into a round orange shape. Used to limit myself to Xmas only but the pound shop do them for a £1 and it would b rude to ignore such a bargain.
Carolyn xxx
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What is PIP? Here in the US we have social security disability. You can get it if you are disabled. It is really collecting your social security early. It is based on your personal earnings the government takes a percentage of your income. You are allowed to work some. You must not earn over $810 dollars a month for 2016. Depends on your income level if you are taxed on it. 

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Barton
Yes ..used to be able to make the Orange last for two days ..now I can do it all in one sitting !! Oink oink.
With pip ..just look up online ..get the helpline number and dial it ..they will ask you a few questions and then send you a few forms ..it's easy as you can ignore a lot of the questions . Send it off and they will then contact your oncologist etc. Mine took six weeks this way ...
Carolyn xxxx
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Hello Carolyn, yes, the choc oranges are getting smaller - there was lots of stuff in the news about it a few weeks ago. Everyone was up in arms over it!

 

Just read Truffle's post about claiming PIP - still not sure whether to go for it or not, or what route to try (GP, who is a little strict, although great, or Onc team). Anyone any views on which would be best?

 

Hope everyone is as well as can be today.

 

Hugs. Barton.x

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Good morning ladies
Well loved strictly dancing on t.v. last night and ate a whole Terry chocolate orange to myself ( I'm sure they are getting smaller) but didn't fancy the wine .
Hope everyone is well (ish) and enjoy a nice chilled out Sunday morning .
Xxx
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Haha yes Carolyn then say I've had this for ages if he even notices lol x x
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Oh jultz
Online shopping is so much better isn't it? You choose , pay and then wait for a little man in a white van to deliver the goodies ( its best when hubby is not at home and you can hide it too !!! )
Carolyn xxx
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Hi Carolyn I ended up looking at stuff online too x x
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Hiya jultz
I tuned in a couple of times too ..stand up to cancer . davina mckall was doing a rectal thing on a dummys bum and then a little poorly girl was on ..switched back to my shopping channel for xmas shopping ideas!!
Carolyn xxx
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Hi everyone I've just ate a big bag of chocolate buttons the giant ones they were lovely❤❤can't wait till this stand up to cancer is finished in know it's good but the stories stress me out it seems every time I put the telly on I just can't get away from it. Hope you ok Sharon thinking of you every day and hope everyone else is doing ok ❤❤
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Ha ha
My " family" bag of twirls is mine all mine ..sod family ..they can buy their own !!
Oink oink 🐷🐷🐷
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Er sorry Mrs I don't share my chocolate with ANYBODY! you'd have to bring your own 😆😆.....I'll share my wine though!
Hugs Janette xxxx
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Jeanette
Chuck in my guilty pleasure of x factor too and that's very much my Saturday night .
Pity we don't live nearer each other ..we could share the wine and chocolate then !!
Xxxx

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Oohh that's my Saturday night treat Carolyn, a glass of wine a block of Dairy Milk and Strictly Come Dancing.....perfect Saturday night 😆😆
Janette xxx
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Jeanette
I've also bought a few Xmas pressys when I've been out and about to save the last minute rush.
Pampering sounds lovely and hopefully Indian head massage will help too.
A nice glass of vino collapso tonight and a bar of chocky will finish your day perfect.
Carolyn xxx
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😂😁Carolyn you crack me up!!! What you like!
Well I've done more Christmas shopping today lol, nearly finished now!
I went for a facial massage yesterday followed by a little reiki, really enjoyed it, very relaxing. I'm still struggling with headaches so it was a choice between a facial massage or Indian head massage, thought I'd have the facial then try the head one next week.
Hope you all have a good weekend ladies.
Hugs Janette xx
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Hello ladies
Hope you all tickity boo ..ready for weekend and half term if u have kids ..
Sharon ..we are all thinking of you xx💓
This morning went supermarket and outside stood on a dogs paw ..said sorry and bent down to pat it ...realised it was a stuffed one beside a stand for "dogs trust donations" !!!
What a wally ..Only in my world !!
Carolyn xxxx
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Sharon, I'm hoping that your procedure went forward as planned and you are starting to feel more comfortable from drainage. We are all holding your hand.  Gentle Hugs! FF

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Bonariensis - glad you are feeling a little better today. Hope you continue to improve.

 

Sharon - good luck for today.

 

Hugs to all. Barton.x

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Thinking of you Sharon hope everything goes well 💗💗
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Thinking of you Sharon, just remember all your cyber buddies are holding your hand!
Hugs Janette xxx
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Sharon Hope all goes well for you today and that you feel better for it xx B

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Good luck Sharon hope all goes well for you and you start to feel alot better after the drain and I hope you manage to do it ok for youself.

 

Love and (((hugs)))  xxx

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Yes Sharon,

 

you mean a great deal to all of us. You are in our thoughts today. Hope you feel better soon.

 

love and hugs

 

Moijanxx💙💜💚💙💜💚💙💜💚

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Sharon I  hope today goes well and they can get you more comfortable. Holding your hand xx

 

The trouble with raised toilet seats is that they loosen and need tightening every so often, also you have to take them off to clean them and the loo to be sure all is clean. I got fed up and actually bught myself a new higher seated toilet and replaced my old one, much happier.Smiley Wink

 

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Good morning Sharon.
Well today is "d" day ....drainage installed for your swollen tummy.
I hope it helps, makes you more comfy and that nasty blood clot has also dissolved itself too.
On behalf of all of your buddies ...loads of hugs and kisses.
Carolyn xxxxx
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Hi Natalie,

 

thank you for that.

 

Yes everyones TMs are different...Ive recently got a print out of the last 18 months. Seems mine were higher. Than yours when Cape was said to be working for me...they were bobbing up and down...quite confusing!

however, this June they were sky high, but they have done a nose dive over the past 3.5 months!

 

it is definitely the Eribulin.......just praying the tumours have vanished when I have my MRI this Weekxx

 

Moijanxx

 

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Thanks Carolyn and Barton. I have been lookng at raised toilet seats on line. Pain better now after my daughter told me to carry on taking anti inflammatories as well as what the doctor prescribed. She should kow, she suffers a lot with her back  B xx

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Hi Bonariensis, 

 

thank you.(..maybe a bit of a shooting star!)

 

Yes, I find it hard to 'get up' from low seats more tho. My chiro told me I need my btm higher than my knees, when sitting, and its true! I now sit on cushions to raise the sofa. Loos have not been an issue yet..tho the seat  mentioned by our friends sounds a good idea,( maybe I could sit on that instead of the sofa lol)

 

i do hope your back gets better....maybe try a chiro...Im quite lucky, mine always seems to fit me in when I need herxx

 

love and hugs Moijanxx

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Hi Moijan, everyone's TMs are different,  it's the trend that the onc looks at  (going higher /lower) mine were touching 200 at the beginning.

Thank you ladies for all your replies to my TM results. 

Hugs Janette xxxx 

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Ive got one of those seats for the toilet in my garage as I had one issued after my hip op last year .. brilliant but Im finished with it now if you want it. 

If not you will be issued with one if you can see the occupational therapist. They cost £40. 

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Bonariensis - just seen your second post about problems sitting down on the loo. When I had my really bad back last year, I was given a gadget to fix over the loo to raise the seat. It had 2 very strong handles (each side) to help lower/support yourself. It was amazingly useful! Can you ask your hospital if you can borrow one? There is a place in Exeter called PLUSS that lends these things out.

 

Hugs. Barton.x

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Hello Janette, that is wonderful news! Long may it continue. I asked about Letrozole at my last Onc appointment, but was told that as Anastrozole and Exemestane had both failed for me that Letrozole wouldn't be of any help. A bit of a disappointment really as you and Carolyn both seem to be doing really well on it! Anyway, brilliant result!

 

Hugs. Barton.x

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Oh bonariensis, so sorry to read about your bad back and hip! Sorry you can't get hold of your Onc - did you ring your chemo unit? - could they help? That wasn't a negative post - you have been suffering, and then you get a letter like that after a year of Secondaries - you have a right to complain!

 

Feeling guilty you drove all that way now! I think you would probably be in a worse state, though, if I had driven in my car - nowhere near as comfortable as yours!

 

I do hope you feel better soon. Hopefully the strong painkillers will do their work.

 

Hugs. Barton.x

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Thanks Moijan, you're a star. Not driving but gardening I think. Will drink lots but wish I was a man. Trying to lower myself onto loo quite traumatic at the moment! Onc next Wed.  xx

 

Sharon Hope your drain makes you more comfortable. Not before time. xx

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Good morning ladies
Well flu jab, blood test and bone juice now done ...so perforated now like a little tea bag !!
Hope u r feeling a little better Sharon ....enjoy some rest and tomorrow u get your drain so hopefully a bit more comfy ...
Hugs xx💜💜💜
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Natalie...excellent news re your Tms. Mine were sky high  in the Summer...so yes, as Carolyn says, yours are teensyweensy now, , but I too dont understand TMs very well what were yours at their highest point? 

 

Anyway, am pleased for you

 

Moijanxx

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Hi Bonariensis,

 

Oh dear! i am really sorry about your back. I immediately wondered...( being far too practical on the rare occasion) , I wondered if the pain in your back might be related to the very long drive you kindly made for us all, to meet us on Saturday? Sometimes muscles do get very stiff and then suddenly complain. The other thing I have found myself...is that when im under pressure, I sometimes get sciatica...

 

When I hurt my wrist last December, I got hip and leg pains, which progressed to my knee giving up altogether for about a day!! I kid you not! Obviously we all always think the worst...but hopefully in your current case it isnt.    Obviously yes, do see the onc asap to set your mind at rest.....can you ring his secretary?(Oh just noticed you did....maybe the nurse specialist can get you seen?)

 

I  also do have a 'tame' chiropractor who sees me when I have a flare up of sciatica and she always sorts it....which helps me to worry a bit less. If she ever cant...then ill be chewing my nails..finger and toes!

 

keep us posted and drink buckets of water with the pain killers...they always bind me up!

Moijanxx💜💙💚

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Well my luck ran out for the time being on Sunday when I tried to get out of bed and felt a sharp pain in my back and hip. It's got worse every day since but got some strong pain killers from GP yesterday. Tried ringing the hospital. Consultant's sec. not there on Tuesdays, consultant on holiday, did manage to speak to someone.

 

Got a letter from Macmillan/hospital oncology at the weekend inviting me to an all day event for 'recently diagnosed patients' about living and coping with cancer and support available. This event happens every year and I knew about it from a friend last year but couldn't find out anything about it. I was a bit annoyed by the letter. A year can be quite a long time for a cancer patient.

 

Sorry, this is a rather negative post

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Fantastic news Janette, keep sharing the good stuff. Take care, love Helen x
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Great news Janette, hope you carry on getting it. Don't worry about posting good news, we are all glad to hear it and share it  xx

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Hiya Jeanette
Wonderful news ...I don't know much about tm as I don't get them but the ones you have is virtually neglible surely ? I have ready people have up to a 1000 on another site.
Just read on facebook ..a lady been on letrozole for seven years for her secondaries and is still stable ...so three cheers for letrozole ..whoop whoop .
Carolyn xxxc
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Hi ladies, hope I don't sound thoughtless posting this as there is a few of us struggling at the moment but I wanted to share my good news with my cyber buddies.
Just rang my MacMillan nurse to see if my tumour markers are back, they are now 25!.....thank you letrozole! Each 3 monthly test they have gone down, from 167 this time last year when they switched me from tamoxifen.
Hugs Janette xxx
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Sharon, so sorry you are suffering so badly at the moment! I do hope you manage to get sorted out soon - they seem to be giving you the run-around at your hospital - they need to sort themselves out!

 

Hugs. Barton.x

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Hi ladies, just to add to the flu jab debate. I never had one while i was on chemo but this time, as i'm not on anything, i asked my onc and he saisd definitely have it. I had it in my leg to lower lymphodema risk and for abot a week i had big red itchy patch but so far no other problems. Was interested to read that the adult version is not 'live' as i have been looking at a trial that says you cant join if you have had a live vaccine within 30 days, so may look into it further.

cant really help on the calcim problem FF but i have been on adcal 2x day for ages and my Dr has just changes it to something called theical-d3. They have to be chewed (whereas adcal can be swallowed although i was told off in hospital for thAT!!) and they taste horrid..sweet nd fruity, which perhaps most people would like?? It was done purely on a cost basis and i have asked to be switched back so will see what happens when my next lot are due.

Sharon..so sad to hear you are once again laid up, no wonder you are 'down'. Just glad you went to hospital though and they picked up the clots. I had a puilmonary embolism, completely bypassed the dvt stage and was so lucky that my gp was on the ball. Hope they start getting you right very quickly.

Love to all. xx

 

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FF I have no answers for your painful joints but I work on the principal of if it hurts more than normal ..something is wrong.
I have bone Mets ..I take a Adcal tablet daily and have denosumab jab every six weeks now.
Can u ring the oncologist and ask if its normal for pain like this .
Carolyn xxxx
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Oh Sharon ..you poor love ..certainly going through the mill lately but you are in the best place for hopefully some treatment to help with it all.
Keep in touch with us ...we are all holding your hand and I will open my hugs cupboard and send loads of them .
Carolyn xxx💟💟💟💟