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Bone mets - please join in

Bevlaar
Member

Re: Bone mets - please join in

Welcome back lynn! Sounds like a great time was had by all....yes I think you should get back out there in oct too...go for it😀
You must be shattered this morning with all that travelling and now having to drive to the hosp.
Im sure it's going to be straight forward though and you"ll be glad you had it done.
Take care...love bev xxx
Lynnq
Member

Re: Bone mets - please join in

Hello ladies. Back from Florida now, had a brilliant time, very hot and hardly any rain. The granddaughters loved it. Felt good most of the time out there, but very achey on Sunday when arrived home, however much better now and such memories!!
i said it would be my last trip, but we'll see what the future holds....husband already talking about him and I returning in October for New England autumn......we had that trip planned years ago but had to cancel due to 9/11. We were due to fly out 9/12. Don't know if we will get insurance renewed next year so he reckons we should go for it now!,

I am lying awake now, due at the hospital at 7.30am to have a very unsightly 'dog ear ' removed. It is on the same side as my node removal and sometimes gets swollen as there seems to be a bit of lymphoma (spelling wrong I expect) there. A bit concerned that messing about in the area will cause problems but when I went for pre-op (before Florida) nurse told me that surgeon would not do it if that were the case. Going to get up now and wash my hair and shower...it's almost an hours drive to hospital but hopefully should be discharged home this evening.

Just caught up on all of the posts again, what lovely supportive people you all are!
pam01
Member

Re: Bone mets - please join in

When I was having radiotherapy to the collapsed vertebra in my back there was a lot of concern re the dose of radiotherapy my spinal cord was receiving (tumour was in contact with spinal cord) and the way the dosage was given over 5 days was directed to minimize dose to cord.....So sometimes dosage is limited by surrounding structures. Even so at next MRI it showed that bone marrow accross a number of vertebra had been replaced by fatty infiltration...and so the actively dividing bone marrow cells had been damaged...my onc said he wasnt worried and it was balancing risks......but along with chemo it is another comprimise to the production of red and white blood cells.....which as disease progresses may become an issue. Helen I dont think lung tumours are very sensitive to radiation and it may also do damage to the lung tissue...so possibly not a good idea.xx

2catlady
Member

Re: Bone mets - please join in

Hi,janette,no put them in your hand luggage incase case goes missing and always take more than you need incase of delays ,that Icelandic volcano has been having a rumble lately !! I pack my oromorph in suitcase only because it's liquid and don't want any hassle .
I've been munching ginger biscuits for purely medicinal purposes lol ( oops my nose has grown)
I don't know why we can't have rads to kill cancer. I asked onc could he zap tumours in lungs while he was doing chest and he said no it would cause more harm than good???!
Well I'm off for early night as running on empty at moment,chemo and rads not a fun combo,roll on end of September when I have my date with Mickey Mouse.
Night lovely ladies,catch up soon,Helen xxxxxx
vercors
Member

Re: Bone mets - please join in

Good eveneing ladies, 

I never took any letters with me, just a copy of my prescriptions. My meds never left me, all of them in my hand luggage.  I would not put them in my suitcase. 

Just go and enjoy the sunshine. 

Re radiotherapy, it is used for both pain and killing cancer cells. I had some when I was diagnosed with primary BC. http://www.breastcancercare.org.uk/node/1153834 

 

While the aim of radiotherapy for secondary breast cancer is to control the progress of the disease and relieve symptoms such as pain. It is mostly used when the cancer has spread to the bones, lungs or brain or to control regional recurrence in the skin or armpit (axilla).

Radiotherapy treatment for secondary breast cancer is much shorter than for primary breast cancer and is given as a single dose or as a short course over a few days. The side effects will vary depending on which part of the body is being treated. Radiotherapy carries on working after the treatment has finished, so you may not feel the benefits until one or two weeks later.

http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/secondary-breast...

 

bc-lass
Member

Re: Bone mets - please join in

I would like to know the ssme thing actually!
rosie53
Member

Re: Bone mets - please join in

Thanks Sara, flipping eck why is everything made such hard work for us boney ladies i only want a week away in the sun!!! 🙂 I was also told told to carry my meds in my hand luggage not case I was all set to put them in my case.....mindfield!!!!!!

All this chatting is doing no good for "holiday diet" im sat here munching through biscuits lol.

Changing the subject does anyone know why we only have rads for pain relief and not to try to kill cancer cells??? My aunty has a facebook friend in America who has mets and she has said that her mets are now in remission due to having radiotherapy???

Anyway im going to put the biscuit tin away now and and make a start on tea.

love Janette xxxxxxxxxxxxxxx

 

2catlady
Member

Re: Bone mets - please join in

Doh! Yes that makes sense,sorry. My doctor wrote me a simple letter saying to whom it may concern this lady is a patient of mine at above surgery ,name,DOB etc and I was on oromorph,zomorph and diazepam for back pain. Nobody asked or questioned me about them and this was for USA. The only questions I was asked was am I carrying any ,firearms,illegal drugs or explosives !!??? Really??!
My doctor didn't charge me but I do know some doctors do.
Hugs,Helen xxxxxxx
Faraway
Member

Re: Bone mets - please join in

I went back to my GP after I also read this last year and all they did was write on my prescription that I needed all drugs as listed!! They said anyone can forge a doctor's letterhead but to forge a prescription is a lot harder and now will not even write a note on prescription!! I am planning on packing double qtys one set for my suitcase and one set for OH just incase!! x
rosie53
Member

Re: Bone mets - please join in

Sorry Helen i'm talking work jargan!! (Work in a pharmacy) CD's is short for controlled drugs.
Sara thats what my GP told me but on the NHS website it says you must have a letter from you GP stating your name, date of birth and your dates of travel??? I bet my surgery will charge me £30 for a letter...arrgg!!
love Janette x
2catlady
Member

Re: Bone mets - please join in

Hi,Ethel,great to hear from you,you are sounding a lot more up beat. Yes,you need time to get your head around everything that's happened. Glad the patches have helped. Enjoy your time off with your son instead of being at work,he'll love it.
Huge hugs,Helen xx
Faraway
Member

Re: Bone mets - please join in

Hi Janette, I do feel a lot more positive now thanks and long may it continue!
My GP said as long as I take my latest repeat perscription that will cover me as it has all the info on there and keep all drugs in their original boxes.
Sara xxxxxx
2catlady
Member

Re: Bone mets - please join in

Hi,janette,what are CDs?( apart from things that play music)
Helen xx
rosie53
Member

Re: Bone mets - please join in

Hi Sara, your sounding so much better these days 🙂 hope you enjoy your holiday.
Can i ask all you ladies who are are travelling abroad with CD's have you got a letter from your doctor saying that you are prescribed them??
Thanks Janette x x
rosie53
Member

Re: Bone mets - please join in

Bev you go for it girl!!! A luxury getaway sounds great, i understand you being hesitant but we can't let this disease rule our life otherwise we would never do anything.
Love n hugs Janette x x
Ethel_horner
Member

Re: Bone mets - please join in

Hi everyone, I am home today with my little smasher. I should be back in school (I teach) but instead 'the announcement ' of my demise is being made!!! I am waiting on ovary removal date, then start of treatment. I'm looking at what all my options are for the future but as no one really knows when I'm off I shall have to make the best decision I can. I'm 51 boy of 12. I've taught for 20 years. Ex of 29 years moved out with my foot behind him 1.8.14 and I was dx bone mets 13.8.14. I now have an 80k mortgage but the feeling of freedom is surprisingly immense. I am not dying just yet and hope I have time to enjoy being alone with my boy. I'm on morphine patches for the hip pain which has really helped. I've been in pain since April! I'm taking things easy while I adjust to the diagnosis. I'll weigh up the options but hope that I will be able to retire early and enjoy myself and get my house in order! Thank you for all the posts here they are keeping me sane! Ethel x
Smartie
Member

Re: Bone mets - please join in

I bought a camper van too and would agree its the best thing I've ever done. Plenty of freedom, great for days out and/or longer holidays. We are off to France for two weeks in it in September!
Bit cheaper than a holiday home and you could have a different sea view every night if you wanted!
Smartie x

su-bee
Member

Re: Bone mets - please join in

I bought a campervan, best thing i've ever done.

2catlady
Member

Re: Bone mets - please join in

Hi,bev,you only live once! I'd go for it if I were you. You will get many ,many years out of it and make lots of happy memories for your family.
Huge hugs,Helen xxxxxxx
Bevlaar
Member

Re: Bone mets - please join in

Morning all. Just wanted to jump in and wish everyone about to go on holiday a lovely time....with or without George Clooney....eh Helen/chocolates??

Just to mull it over with you...I was considering buying a (luxury) holiday home at the end of this season in an idyllic spot overlooking the sea for the family and would be in an ideal situation now with my pension coming available. Its somewhere I can get to in less than 2 hrs and because I only work 2 days I can spend most of my time there....its an absolute haven ☺
Problem now is....not being too morbid but just being pragmatic. ....how many seasons will I get to use it??
Is it worth the outlay or should I just save the pension for the family?
Ah well....needs a great deal of consideration. 😕
Love and hugz. ....bev xxx
Faraway
Member

Re: Bone mets - please join in

Morning everyone,

A little dull here in the East Midlands this morning. Why does the weekend always go so fast, I feel I am constantly working, never mind though off to Majorca on Wednesday for a relaxing week in spa hotel with OH. It seems a few of us are holidaying at the moment.
Helen I hope rads go ok for you today not many to go now 😄
Hi Lorsie as other ladies have said everyone on here is a helpful friendly bunch who give so much support.
Hope you all have a lovely day, take care Sara xxxxxx


rosie53
Member

Re: Bone mets - please join in

Morning ladies, how is everyone today??
Weather wet here too but the weatherman says we are going to have nice weather as the wk goes on!!
Chocolates hope you enjoy your first day back at work.
On holiday count down now....yipeee, need to start my packing list 🙂
huge hugs to everyone Janette x x
2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies,
Hugs to Sheila ((())))
Have a great first day chocolate,I loved first days back as I missed the children and the new reception class are always sooooo cute.
Mr C just arrived,he has his brolly as pouring with rain here. So no sitting under parasol 😞 lol

How are all our new ladies doing? Please jump in.

Tracy,have you packed as it's not long for your holiday? Hope u are fully rid of cold now.

Waving to everyone
Huge hugs ladies,stay strong,Helen xxxxxxx
Bevlaar
Member

Re: Bone mets - please join in

Hi Sheila. ...only just got a signal back so haven't been able to msg you but just really pleased to have seen your post. Great to know you're ok and on the mend!
Look after yourself xxxxx
Chocolates
Member

Re: Bone mets - please join in

How fabulous is it to hear from Sheila - really made my day. Get well soon lovely lady - we're all here for you.

Right ladies - back to work for me tomorrow - might maintain a bit of radio silence for a couple of days but will be reading posts. Have a good week everyone and stay well all of you. Sending gc over to Helen minus matches - although I do hear that weather brightening up towards the end of the week so have given him strict instructions to burn it if Helen thinks about getting the parasol out. Youve been warned Helen.

Hopefully will catch up with some of you on live chat.

Take care lovely ladies,

Huge hugs,
Hxxx

rosie53
Member

Re: Bone mets - please join in

Hi Shelia, good to hear from you!!!glad your feeling a little better,have you been in The Christie?
huge hugs Janette x x
roxy12
Member

Re: Bone mets - please join in

Just spotted your post Bev. Thank you. You can pm me anytime though. Good luck with holiday insurance!

Love Sheila. Xxx

2catlady
Member

Re: Bone mets - please join in

Hi,Sheila ,sooo glad to hear from you we were all sooo worried. Sending you massive hugs,stay strong lovely lady,we are all here for you,Helen xxxxxxxxx
roxy12
Member

Re: Bone mets - please join in

Hi to everyone. Am back on track sort of! Thanks chocolates, Natalie and Helen, everyone for your kind words. I haven't had chance to look at all the posts yet. Still feeling pretty cr___! But better than I was.

I was admitted on my birthday for very high calcium levels but feeling so Ill I didn't mind. Have had treatment for this and levels now normal. Started on vinorelbine last Tuesday evening so don't know whether symptoms I have now are from chemo or because I am still feeling Ill from other stuff or what? My HB is still only10.1 due to gastric bleed a couple of weeks earlier.

Symptoms are nausea, weakness, backache, joint pain. Have my bloods done Tues followed by chemo and then week off. 

Hope everyone is okay. I will post again soon. Take care all of you. Sending hugs back to you and love. Sheila. Xxx

2catlady
Member

Re: Bone mets - please join in

Hi,lorsie,sorry you are joining us but as the ladies have said jump right in. We are a very friendly bunch who support each other and as chocolate said we even have a laugh.
We all struggle at times however far down the line we are so don't be afraid to ask anything or if you need a hug we are all here foe each other .
Huge hugs,Helen xxxxxx
rosie53
Member

Re: Bone mets - please join in

Hi Lorsie, sorry you have had to join us but your very welcome, feel free to ask away any questions you may have.
Hi to all my lovely "boney" friends hope everyone is feeling well.....Shelia sending you a big hug hope your ok???
Love and hugs Janette x x
Chocolates
Member

Re: Bone mets - please join in

Lorsie, you are most welcome here. You will find advice, support, a place to vent your fears, or to just shout and scream about anything you want. We are all here for you and also like to have a laugh when we can. Ask away or just join in when you want to. Which hospital are you under and where are your mets? Do you have a treatment plan?

Lorsie sending you a huge hug. Let us know how you are doing

Hxxx
Lorsie
Member

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Hi everyone I have just discovered this blog. I'm struggling with it all at the moment so this is great to have found you. LorsieX
Bevlaar
Member

Re: Bone mets - please join in

Morning helen and all our other ladies! Sorry cant go thro individual replies...signal is very weak and intermittent where we are in Pembrokeshire so I just have to grab it while I can! But its a glorious day blue sky and sun and no cloud 😀
Sorry youre still sore from rads...hope its not too uncomfortable but ...youve always got Mr C to rub something soothing in for you 😉😉!!

by the way did you try Eurotunnel for insurance? Mine was £71.50 for couples annual European cover. Think about £20 more for worldwide?
Ive had couple of nights woken with a choking fit ....feel like somethings stuck in my throat...could be mucus?

Hope sheila is ok....think I may pm her. I havent had a msg for few weeks now.
Enjoy your sunday everyone ?🍨🍨💟
Love bev xxx
2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies,
I hope we are all "well" and enjoying weekend.
Mr C texted me to say he'd love to sit under my parasol so he'll forget the matches lol.

Oh our Lynn,will be back from Mickey land ,waving to Lynn 🙂 when you're not too jet lagged come and tell us about mickey magic.

I tried to get insurance yesterday but,being on chemo and rads at same time is a no no. Also having progression to liver and lungs and not being stable is a huge no no. But bone mets are okay. I'll leave lung and liver at home lol
Oh well nothing is going to stop me,mickey I'll be there soon .

Oh,I forgot to mention,my friend is just back from Sorento And Mr C was in Prada buying something( I reckon is was his apron for Belinda)she didn't see him just heard commotion .

Well I'm off to visit a Red Cross garden today,cat themed! Right up my street lol

Onto last 4 rads tomorrow yippee! Under arm is soooooo sore. But not sickly(at moment) double yippee! Had a major coughing episode in the middle of night ,which gave me quite a fright. I'm hoping it was the Cap kicking Cs butt and nothing else.
Huge hugs to everyone,stay strong,Helen xxxxx
Sheila xxxxxx((((())))) thinking about you
nicky08
Community Champion

Re: Bone mets - please join in

Yes, I also took out an annual policy with eurotunnel earlier this year for about £46, covering worldwide. As long as you are stable, fit to travel (and your onc/GP would be able to write or confirm this should a claim arise), not seeking medical treatment abroad you are OK to be covered.  They do have wording regarding 'terminal' which is always difficult but I have checked twice now and they say it is if you are been told you have weeks/months to live not that you have secondary BC.  It covers you for cancellation as well as short breaks in the UK, unlike many others I've come across.

At the moment I have had slight progression with my mets and have changed treatments so I'm sure the rest of my poilcy will be invalid and therefore won't use it.

Hope this helps.

Nicky x

spudlab
Member

Re: Bone mets - please join in

I got an annual worldwide policy with Eurotunnel for less than £80. They simply say your doctor has to have said you are fit to travel when you book. Even covers me for scuba diving
rosie53
Member

Re: Bone mets - please join in

Hi Porkie, im going to Gran Canaria 11th Sept for 1 wk i got insurance with InsurePink it cost £47.15 that coves me for up to 5million and would fly me home if needed, i didnt think that was too bad.
Hi to all you other lovely ladies love Janette x x
Porkie
Member

Re: Bone mets - please join in

 thank you so much I called MIA online and spoke to a lovely gentleman and have full cover aprt from cancellation for £61. Really chuffed because would have gone withoutbut nice to have piece of mind and thank you again.xx

Ethel_horner
Member

Re: Bone mets - please join in

Hi girls! I spent all day at uhcw yesterday seeing bods to organise the removal of my ovaries. I took my sister who has taken this secondary diagnosis badly (and she tried to hang herself the first time -lol). However she suddenly realised as we sat on 'death row' as we call those seats that all that was happening was that I have resumed treatment. She can live with that and so can I. I'm off out for pub lunch and a troll round home bargains (Ethel heaven). Thanks for all the posts here they really do keep me sane. Ethel x
pam01
Member

Re: Bone mets - please join in

Porkie I would suggest either eurotunnel........but Ive never anyone say they have claimed on this ..or MIAonline which normally cover european trips..having asked about details of the illness...but limit you to public hospitals first....xx

Chocolates
Member

Re: Bone mets - please join in

Belinda - gc texted to say here in an hour so just getting ready. Have left washing up as he can do in his apron!!!! Thank you - Helen he'll be with you Monday. I'm sending him up with matches to burn your parasol but he'll be in an army uniform as compensation. I need to get my washing dry so the parasol needs to go!!

Porkie - I remember people using Eurotunnel and getting cover quite cheaply. I think Bev knows the details. I'm sure once she's back she'll let you know.

Just finishing off my final bits for inset on Monday. Two sessions to lead - one done but one still in my head - need to get it down on paper. Then let the madness begin - I'll become a reader of comments again and only commenting at weekends. I'm glad to be back though - for me work is my normal and stops my mind thinking of other things.

Right well I best get ready for my visit. OH just off out to play cricket for the day so good timing sending gc over.

Have a lovely weekend ladies.

Sheila if you're reading this - I hope your first chemo wasn't too bad and hopefully you're at home getting your strength back. We look forward to hearing from you soon when you're ready.

Huge hugs,
Hxx
Porkie
Member

Re: Bone mets - please join in

Morning lovely ladies. The sun is shining here in the South West again so Helen must have her sun brolly in! I am off to Corsica in a few weeks - was going to not bother re travel insurance as Europe but thought I would just see how much it might be - over £1000 - wow!! I know that some of you have managed to get affordable cover and just wondered what companies you used? Thank you. Best wishes to you all xxx

belinda
Member

Re: Bone mets - please join in

GC just caught the bus, he is on his way to see you chocolates and I have given him my last Vanish stain remover for any chocolate, wine stains. He is wearing my best apron, is that a sort of uniform Helen? 🙂
I can't believe Jenni Murray is a patron for breast cancer when she uses her media platform to voice such thoughts. 😞
2catlady
Member

Re: Bone mets - please join in

Oh,chocolate,I watched GC in monuments men last night . GC in a uniform!!!!! Mind I had glass of water and ritz cracker as still sickly. But mr c took my mind off things 😉
Yes,Sheila ,has been quiet for a while. I'm praying she's okay and out of hospital.
Xxxxxxx
Huge hugs,Helen xxxx
Chocolates
Member

Re: Bone mets - please join in

Morning ladies, sun is trying to come out here in london. Fingers crossed - got some washing to dry. Jenni Murray infuriates me - selfish cow. Have no time or patience for her since that daily mail article and she is a patron for a breast cancer charity. Why don't they get rid of her. She's awful.

Helen, I'm really worried about Sheila too - if anyone knows please can they let us know she is ok.

Tracy - glad to hear you are on the mend. Only a week to go and then you're off - bet you can't wait. Are you a light packer or like me do you pack the kitchen sink as well? Hope your week goes smoothly. Also pleased dog is sorted - they eat everything don't they and like you said the cost at vets is not cheap either. Let's hope he settles now and nothing else happens before you get away. Xxx

Welcome spudlab, you've come to the right place for support. Gosh - you've already seen so many specialists - you must feel you live at the hospital. It's such a scary time and ther are a lot of decisions to make so please don't rush into anything. Take as much advice as you can and come on hear and say what you want when you want. We are all here for you.

Morning Pam, Belinda, Bev, Ethel, faraway, Jeanette and everyone else. Hope all is well with you and have a lovely weekend. Last night for me was bliss - watched Gravity (not enough gc for my liking) with bottle of wine and chocolate fingers. What would Jenni Murray say

Take care lovely ladies and huge hugs,

Hxxx
2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies,
Omg! Yes,Belinda, the nerve of that's woman.that's made me soooo angry,people like her waste NHS money. It's not to keep her alive it's because she's so lazy she can't be bothered to eat healthily or exercise grrrrrrrrr.awful woman.

Tracy,glad colds gone and your ready for hols. Omg to dog!poor thing.

Oh,what about sending jenni Murray to vets for injection every time she stuffs her face with cake,she soon lose weight( sorry angry flash)

Hi,spud lab,dear me ,you have been through the specialists .don't apologise for rambling if you need to get things off your chest this is the place to do it. We always listen.

Has anyone heard how Sheila is,I'm really worried now. I hope she's not still in hospital.

Huge hugs to everyone,Helen xxxxxxxxx
belinda
Member

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Gosh vet bills Tracy! What an expensive cake. Hope your doggy feels better tomorrow. X
Desi-2
Member

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Evening everyone well this time next week il be packing! Yay! Colds almost gone just feel a bit shaky first thing in the morning but that's probably because I'm not sleeping to well since the cold came on.mthanks for your good wishes.

Welcome Spudlab had to smile at your name my brother calls me Spud has done since we were little and still does don't actually know why it just kind of stuck lol!

Had a rush visit to the vets tonight with my dog! I had put a quarter of a chocolate fudge cake, which my sister had baked for me on top of the microwave on top of the kitchen work top wrapped in foil. Thought it was safe, no way she could get up there! Went shopping, came back to find foil and crumbs no cake! Don't know how she got up there. She's 8year old border collie/Akita and now I think possibly part mountain goat. She had to have an injection to make her vomit because of the cocoa, £78!!! Won't make that mistake again, but thankfully she seems okay just looking a bit sorry for herself

Hope everyone has a good weekend
Tracy xxxx
belinda
Member

Re: Bone mets - please join in

Hi spudlab, I was diagnosed with bone mets at the same time too. You will find lots of support here.
For Helen who started the thread and anyone who remembers the thread, it was about the Daily Mail article by Jenni Murray. JM thought Kadcyla shouldn't be available for women with secondaries on the grounds of only offering false hope and the expense involved. Just feeling a bit Grrrr! after reading Jenni Murray is trying to get a gastric band fitted and if she isn't covered by her private insurance she has no issues over using NHS money for her operation. I will calm down in a minute but really!