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Bone mets - please join in

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Re: Bone mets - please join in

Good morning everyone. Hope you all have a relaxing family filled bank holiday weekend. I have had a big breakfast cob and now having a sit down. Xx

 

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Good morning ladies
Firstly Corey ..hope the senokat worked and you now have dyno rod there unblocking the drains !! Ha ha .
Sharon ..hope u feeling ok on the new chemo and with your nice slim tummy again. Maybe u will b able to go home soon. Did u cold cap as well?
Think I may have to get a new phone ..having trouble getting internet on this one ..probably overused as hubs always says it will have to b surgically removed from my hands !!
How is everyone ? Sunny and warm here and enjoyed a few coffees out on decking already ..and there is a big Belgian bun with a big cherry on it ...saying eat me eat me . Would b rude not to.
Carolyn xxxxx
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Re: Bone mets - please join in

Welcome Victoria and Dotty. Always sad to have new members because of what it means but glad to know that you've found us and that hopefully by doing so you will not feel quite so alone. It's very  early days for you and you'll go through a range of emotions, please come and talk to us we 'get it'. There are no silly questions so never be afraid to ask anything. Things will eventually feel less daunting and you will find a way to deal with your new life. We will hold your hands and help you along.

 

Scratch, so pleased you have been drained and are feeling more comfortable. A bit of a surprize to get chemo today but I  guess at least now you are on the road. Hope any SE's are kind. Fingers crossed you get to go home tomorrow.

 

Janette well done being proactive and getting scan sorted, I  know you weren't keen but it's probably a wise move and just think how relieved you'll feel to know all is well (positive thoughts and vibes for you)

 

Corey, constipation is awful, it can make you feel so ill and drag you down. Yes, senokot should be fine to take. There are other alternatives some of which the others have mentioned. A more natural and gentle way you could aldo try in addition to drinking plenty of water is to have a glass of orange juice each day and sprinkle 1 Tbsp linseed/flaxseed on your cereal or salad (or add it to a smoothy). Good luck.

 

Hope everyone else are doing as well as can be, have a good weekend xx

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Hi Corey,
Have you tried Movicol? It usually takes a couple of days to start working then you jusy take it every day and it keeps you regular. I find it causes less stomach cramps than some of the other laxatives. You get it on prescription. xxx
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Thank you Carolyn . Think I will take senokot and hubby got me rubbard juice x feel rotten
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Hiya Corey
Thats a nasty side effect to cope with but hopefully one of the other ladies will b able offer advice.
Sometimes natural things like liquorice or apricots ( fresh or dried) might help. my hubs gets probs and the only thing that helps is dulcalax.
Sorry not much help
Xxx Carolyn
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Thankyou everyone for your well wishes
Sharon ❤
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Hi all.chemo given may let me out hospital tomorrow...moijan glad your having good results on this chemo.heres hoping
By the way I had decluttered house .wardrobe.kitchen cupboards full of unused gadgets...gave it all to charity shop...and once s week now I take at least one item to there..xxwhen did side effects kick in
X

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Hi well looking for advice . Had chemo Monday all went well no sickness but really bad constipation . So does anybody know if I can take senokot to help . Tried drinking loads of water but no joy . Would be grateful of some advice .
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Well done, Janette, for being so proactive! It is so hard sometimes, though. Glad you managed to get your scan out organised so it's out of the way before your holiday. Hopefully you can relax after you get your results.

 

Hugs. Barton.x

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Hello Moijan - sorry, I can't help - the only thing that motivated me to declutter was moving recently! Sorry, too, nowhere near Surrey! Thanks, though, for the compliments.

 

Hugs. Barton.x

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Sharon, so glad you are more comfortable now. That was a lot of fluid! Just the weight of it alone must have been pulling you down! Hope the unexpected chemo went well (or as well as can be, anyway).

 

Hugs. Barton.x

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Hi ladies, don't post very often on this thread as i find if you miss a couple of days you have to go back pages and pages and i often miss what is happening with everyone.

Just saw the posts from Scratch......so sorry to here you have been in hospital...hope you aren'tstill there. When i had pleural effsions i was on the respiratory ward with mainly old folk coughing their gts up or screamng for the nurse..i hated it, but as Carolyn said at least we have the nhs!! I hope you are more comfortable after the drain, i know i was..at least i can breathe now.

I know i have missed a lot of people out but just want to wish everyone luck with scans, results etc and send hugs to all. xx

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Hi ladies, well I've proactive today and been the phone to the MRI dept, spoke to a lovely lady and explained I'm going away in a few weeks and ideally would like scan out of the way before go......got an appt Tues morning 😊👍my onc is off all next week though so won't get results until following week but at least I will have them before my hols! 

Hugs Janette xxxx 

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Janette, good that you are having an MRI straight away as they are more detailed. Hope you get the results promptly and that they are reassuring

 

Tournesol x

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hi Sharon, bet you are more comfortable now...well done!

 

glad you are starting Eribulin today...you wont have seen my post  yet, but im getting amazing results just 3 cycles in and it seems the 'spongeysauce' is quite powerful. See how your white cells go, Im on Filgrastin and this is really helping me to have minimal side effects... Eg, I got very tired during the first cycle and sorish mouth. I also used to get panic at the beginning, which the nurses found out was due to  the the antisickness drug they give just beforehand..hopefully you wont get panic...but if you do, you can discuss wether to leave the antisic out next time or not.

 

so glad to hear how you are,getting on.  love and hugs, Moijanxx

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Hi Barton, sounds exciting about your flat! I have noticed over time that you are very creative and artistic...find your pictures really inspiring.

 

Since last academic year, I have had a break from college( was doing an art degree, but came to my senses!)  i havent done much work at all, my house is bulging at the seams with peices of work, paints, boards, canvases,  easels, notes, collectibles and clutter. My oh is really fed up because  our dining room is now an extra storage room for my junk! Sadly, im coasting just now, as youll understand, and I cant be bothered to declutter. Have you any tips for remotivating??

 

im so impressed with all your achievementsxxx

much love, Moijan😍💜💙💚

 

ps..if you live in Surrey, maybe you could call by  and help me lol😄

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Hiya Sharon
Phew a lot of fluid but at least its gone now and u can get yr jeans done up again.
Maybe a good idea for chemo now whilst u r there .
Thinking of you xxx
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Hi .iv had drain removed it was five and half litres..so much more comfortable.but as I'm here my oncologist has decided to give me my chemo.erubulin.bit of a shock was supposed to start it on fifth...oh well..xxlook like iv been dragged thru a hedge backwards..thats before the chemo
X
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Oh Barton
Very proud of you but I'm a bad influence on your shopping !! Sounds good for all your craft stuff though.
Jeanette
At least u have yr scan ..bit scary but worth it for peace of mind. I bought half price xmas cards once but couldn't find them when xmas time came !! Xmas in planet carolyn starts 1st December !!
Waiting in for delivery ..did a little bit of online shopping this week ..boring stuff .
Xx
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Carolyn, I've just been into town and the card shops have all got christmas cards out! 🎄🎄Must confess I bought mine in January 😀 I always go and get them at half price, you can spend a small fortune and family cards!

I rang The Christie hospital where I'm having my scan this morning to chase things along (now I'm having one I just want it over with) anyway its an MRI I'm having not CT like my bcn said. 

Sun is shining here today. 

Hugs Janette xxxx 

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Re: Bone mets - please join in

Welcome Victoria and Dotty! This is a great place for support, ranting, and fun! FF

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Hello everyone - sorry if I have forgotten to welcome anyone - so busy lately that I have a feeling I have lost track! Smiley Happy

 

Carolyn, you would be so proud of me - I've been shopping for the flat again! This time The Range has kindly provided 2 tall bookshelf units and some storage boxes (woven sea grass?) -4 large and 2 small - to go on the bottom shelves for yet more craft stuff! By the time I have finished (and, hopefully, this is the final purchase!), everything should be tidied away nicely. Spent more than I had expected, but a lot less than it would all have cost elsewhere.

 

Hope everyone is doing OK - thinking of everyone who is in pain and anxious.

 

Hugs. Barton.x

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Hello Dotty, welcome but sorry you have had to join us. The other ladies have already said it better than I can, but please feel free to vent when/if you need to. We all understand. 

 

Good luck.

 

Hugs. Barton.x

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Good morning ladies
Well arnt we busy here today but it's good to see a lot of postings ...
Hope everyone is ok and looking forward to the bank holiday weekend ..and then it's doom and gloom of winter coming ..boo hoo.
I am not not not ..going to think about Xmas pressies yet and if I see a Xmas tree in the shops in September like last year will have to rant about it !!! Noticed that channel five did an afternoon of Xmas movies last week too ..why?
Carolyn xxx
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Hello Victoria
If you find a thread calked secondary private forum just above the bone Mets thread ..just pop in there and ask to join
You will get access to come into our inner sanctum where there are lots of threads to focus away from everyday worries.
Also we have a cyber cafe ..it's a bit like narmite ..love it or hate !! It's a place where the c word isn't mentioned ..food doesn't have calories and u don't get hangovers on the alcohol!! Lots of hunky men there to pander to your every whim too !!
Carolyn xxx
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Wide awake but feeling good today!! Thank you for all your welcomes. Could you let me know how to join the private forum please 

thank you and have a lovely day today

xxxxxx

 

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Hi Victoria, glad you decided to join us..we are a lovely supportive family here.

 

Was identifying with you a bit over the thoughtlessness of some people..often strangers! I have lymphoedema and used to have these huge bandages at times. Strangers would actually walk up to me in crowded shops and say.'What did you do to your arm?' I got so very fed up with this, that i created a cover story and started ssying, 'oh actually, i was bitten by a shark' or 'well it keeps falling off' I still get comments about my sleeve and strangers will ask where they can get one from. Its all very wearing and quite rude sometimes.

 

It must be really frustrating to have had that sensible surgery and then find theres a new problem, but hopefully things will level out for you now theres a treatment plan. 

 

Anyway, let us know how things go. Xx

 

Sharon, glad you got to your new ward and hope the drain surgery went well. Wont it be lovely when you can get home again and pick up your treatment plan again from where it was interrupted. Hopefully things will soon be back to normal xxx I hate being in hospital too. The last time my partner sneaked me out for a short drive in the car( honestly!) and brought me back again..it really helped, but I wasnt in for surgery, just antibiotics that time.

 

Moijanxx

 

 

 

 

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Hi Dotty, sorry you had to join us, but as the others have said..we are all very friendly and support each other. Was thinking about what you said about being given a hospice nurse...and how real that feels. Am totally on the same page with you there....life keeps kicking us in the behind, so to speak.

 

however,....

 

A lot of us have found the hospice staff  very helpful for lots of reasons. I expect youve heard about all the lovely free therapies they offer like aroma therapy and reflexology, etc. they are also masters at tackling pain control and sorting out drugs etc...some people have said they find them more supportive than the hospital they attend. Just wanted to mention that...as I know traditionally hospices were associated with late stages...but now they also play a big part in helping us remain as well as we can be.

 

i have mets to the liver and spine, and even tho im feeling very well and not currently in great pain, im thinking of visiting my local hospice to see what they are like and see if I can grab some free reflexology sessions occasionally....just thought id mention that.

 

hopefully things will settle down for you soon, do let us know how things are going

Moijanxx

 

 

Ps. Our posts crossed Wafgles, hope things are going well for youxx 

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Hi everyone,
Goodness, so much has been going on on this thread recently, it's hard to keep up.
Dotty,sorry to hear you are in so much pain. Hope you get it under control soon. I think the hospice is the place to go as they are the experts in dealing with pain. I've found Gabapentin which is for sciatica/nerve type pain and has been a godsend. Unfortunately it doesn't work for everyone. Hope your biopsy goes well. Your head is bound to feel all over the place just now. You'll be surprised how you adapt once you get into a treatment routine
Victoria, you'll find plenty people who understand to chat to here. Why not join in on the Secondary Private forum too. We have a lot of fun there with our puzzles and book club and generally talking about anything that takes our fancy.
Hollymeg, hello to you too. Sorry you've had to join us but it's a friendly, surprisingly cheery place especially when Carolyn is about.
Janette, I know you don't want the head scan but it will make such a difference to have a bit of peace of mind. Hope it all goes well for you.
Sharon, sorry hospital has been so unpleasant for you. Why do hospitals have to be so hot? It would save the NHS a fortune if they turned the thermostats down a few degrees. Hope the drainage has helped and you can get back home soon.
Hello to all other bony ladies. Best wishes xxx
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Thanks Carolyn52 for your welcome. I look forward to joining the private forum. Sounds great. Jacqui xx

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Thanks natalie1 for your reply. You have made me breathe a bit easier. Thanks for sharing your experience. Its much appreciated. Jacqui xx

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I've had a ct scan on my head but I don't think it gives as much info as an MRI because that's what came next

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Hiya Sharon
How are you ? Hope the drainage has made u more comfy and the new ward is a bit quieter .
Maybe u will b able to go home to enjoy the bank holiday if you are feeling better.
I didn't like the hospital tv's ..they are expensive and you have to put earphones on and I just cant stand them.
Hugs xxx
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Hi Dottyj, sorry you have had to join us. Just want to reassure regarding the bone biopsy, I was dx in March 2014 with bone mets in my hips ribs and spine, 7 years after primary and had to have a bone biopsy to check if my status was the same. Like you I was really nervous about it but it was absolutely fine, they took it from the bottom of my spine and I didn't feel a thing as they numb it, just a bit uncomfortable for a few hours after. Hope this has put your mind at rest a little. 

Take care, Janette xxxx 

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Hiya dotty
Welcome and you will find good support here until you get your head around it all.
Sometimes you think you will wake up and it will have been a nightmare or the fairies have been in the night and took the Mets away or something !!
Anyway ..you can join the private forum where we have games, gardening, craft and loads of everything to get involved with.
Hugs xx
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Hiya Victoria
Well you have had a good welcone ..firstly you must b from up north because down here in Devon we never put gravy on chips !! Only vinegar or hp sauce !!!
There are ladies here that have been living very normal lives with bone Mets once they get the right treatment.
I had to have a femur nail in last year to stabilize the hip and pelvis ..hence that I walk with a stick. Although my mobility is a bit of a nuisance ..I still enjoy life with grandchildren etc and am lucky to be retired so not under pressure to work .
Carolyn xxx
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Hi, I have been here before with my primary in 2012. Just diagnosed with bone mets so far found in lumbar spine, hips and thighs. Just had a bone scan and CT and waiting for results. I have to have a biopsy of the bone which scares me a little. I have been given a hospice nurse and a specialist nurse at the hospital which is all a bit too real for me. I have terrible pain from the mets and am on a sea of painkillers. The constipation is a bit of a problem. But just feel overawed by it all seeing as I thought I was "all clear". Today i feel like crying, yesterday I was fine. Worried I am going to break something until i get the denusomab injection and worried they will just say we cant do anything when the scans come back. Just wanted to hear a friendly voice that understood...

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Hi Victoria, hope your doing ok. I was told I have mets in my ribs 2 weeks ago. Been unsure about it for 2 years. Sounds like you have had it rough. Here if you want a chat x

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Thank you everyone. Feeling so much better already.

xxxxxxxxx

 

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I meant chips and gravy lol
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thank you so much for your reply and how much I relate to what you are saying. I am just getting there with my feelings and thought it was time to get to know some of you who are going through similar situations. I will be posting on here on a daily basis and hoping that my experiences can help others and that they can help me too.

i feel better already knowing that you are all there.

i have just ate my chips and graves so now I am going to bed down and watch a film. Tomorrow I have a busy day and we all need to enjoy the bank holiday weekend. 

Onwards and upwards

thank you again xxxxxx

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hi carolyn

thank you so much for your reply and how much I relate to what you are saying. I am just getting there with my feelings and thought it was time to get to know some of you who are going through similar situations. I will be posting on here on a daily basis and hoping that my experiences can help others and that they can help me too.

i feel better already knowing that you are all there.

i have just ate my chips and graves so now I am going to bed down and watch a film. Tomorrow I have a busy day and we all need to enjoy the bank holiday weekend. 

Onwards and upwards

thank you again xxxxxx

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Hello Janette, just a short note to wish you good luck with your head CT scan. I know you don't want it, but it will put your mind at rest when it comes back clear. Hopefully it is just the stress of all this.

 

Hello Victoria, sorry to read of your recent diagnosis. You will find all the ladies on this site are exceptionally friendly and helpful, so feel free to rant and rave if you need to. We do, however, also very often have a good laugh! You have certainly been through it recently. I hope you feel better soon.

 

Hugs to all. Barton.x

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Oh Jeanette
I know you didn't want the brain scan but it will put your mind at rest ...hopefully before your holiday so you can relax and enjoy.
I didn't think you could have ct scan on head ..must be wrong ??
You will hopefully get a urgent appointment now .
Hugs xxx
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Hi Victoria, sorry you have had to join us but I can assure you that you won't feel isolated or lonely with us ladies for support her. 

Sometimes people just don't know what to say to you when you are dx with this disease, they just "don't think" sometimes do they!  

Take care, hugs Janette xxxx 

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Hi ladies, spoke to my bcn today about my headaches and could it maybe anything to do with clicking jaw, she has spoke to my oncologist who has now requested a CT of brain 😯 really didn't want thus but suppose it is better to check up on it.......just when you think things are going ok something else has to rear it's ugly head for you to worry about!!!

Hugs Janette xxxx 

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Hello Victoria
Firstly welcome to this thread and hopefully you will get sone support and kindness as we are a friendly lot here.
You must be devasted to be dx after having preventative surgery . Phew u have been through the mill the last few weeks but sound like you are coping.
The thing I hate is that people think that because you have cancer and walk with a stick ....we are deaf as well !! And lean over and say " hello and how r u today " very loud and slow. Sometimes feel like shouting back " I'm fine now ?ugger off don't need yr sympathy "!!
Or other people that think you take a few pills and you are cured ...and say oh the treatment is marvellous these days !!!
Ladies here are very strong, positive and very helpful so please stay with us.
Carolyn xxx
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Hi a new member here. 5 weeks ago was told have secondary's in bones. I am also a BRCA1 carrier and had preventive surgery last year which was why I thought I was in pain from the surgery after effects. 

I thought it would be nice to chat with a few on you lovely ladies after reading your supportive messages as feeling quite isolated and life has changed. In the last 4 weeks I have had spine surgery and a new hip. Feeling well but get fed up of people telling me this!! Getting quite frustrated with people who think I can not fasten my seatbelt or hold a teacup!! Need some smiles 😃😃😃😃

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Hope everything goes well with your drain Sharon and you get home soon thinking of you ❤❤❤