67.3K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

bill-ben
Member

Re: Bone mets - please join in

Helen  so sorry your evening was spoiled as said the lady might be old but that doesn't excuse  rudeness . I have a wheelchair that I got through the physiotherapy  people organised by the chemo  nurses before that I borrowed one from the Redcross . Thankfully at  the moment I don't need it except for really long walks. If you get one my advice is to get one you can  wheel yourself .Mine is one someone else has to push and my wonderful family have a habit of leaving me in totally inappropriate places eg the middle of  the pavement with "I,ll  be back in a minute" and clearing off leaving me stuck. Its not until you are disabled  that you see alot of problems that might seem petty . My bug bear is disabled  toilets . Why do they have to put the loo roll behind you so you have a job to reach it! And why do they have to put the baby change  in the disabled loo so you cannot get in the one and only disabled loo and why can't people who use the fold down changing mat fold the flipping thing back up out of my way ! I,m  sure the people who design these things never actually consult a disabled person for their views.I  could keep going but that would take all night . Hoping you all have a good night.



 


i

JulieD
Community Champion

Re: Bone mets - please join in

oh natalie that is so sad, poor Fiona must be devestated it all seems to have happened so quickly. I hope she will find the site a comfort and support.

 

Brr, getting colder here on South Coast, had a little snow today but think we are in for more soon. I like the snow but we live on a hill and always get it worse than the rest of Brighton and Hove and land up being snowed in for days. Hope that doesn't happen this time, not as stocked up as usual!

 

Keep safe and warm lovel ladies xx

 

Chocolates
Member

Re: Bone mets - please join in

Helen, that's just awful. After everything you've been through recently Id hoped that a good night out would be a real pick me up. Never for one minute thought it would be the opposite. Thank goodness you're seeing your onc this week - it sounds like your treatment plan needs some tweaking. I'm sure a minor adjustment will pay big dividends for you. I hope you're keeping warm in this chilly weather. Sending you huge hugs and dc, who has volunteered to clean your mirrors!!

Hi everyone, hope everyone is doing ok. How are you Bev, how are things for you at the moment? Has anyone heard from faraway lately. Getting worried now. Good to see you posting Sheila, and hope Mavis is doing ok also.

Huge hugs everyone.
Hxxx
Bevlaar
Member

Re: Bone mets - please join in

Helen I'm so sorry for what you've had to endure yet again. No wonder you burst out crying. Some people can be horrid.. selfish and unthinking.
Sending you hugs, love and a big welsh "cwtch mawr"
xxxxx
rosie53
Member

Re: Bone mets - please join in

Oh ladies i have just been on thread "mum has secondary cancer" the young lady "Fiona" who posted the other day for advice on her mum has posted to say that her mum has sadly passed away. I feel so sad for her my heart goes out to her....i hate this bloody awful disease its so unfair!!!
hugs J x x
LemonDrizzle
Member

Re: Bone mets - please join in

Helen, what a horrible experience for you which is such a shame as we don't get out as much as we used to due to this nasty disease. The old lady was out of order as you are disabled and in a lot of pain at the moment. Like the others say, please mention it to your onc as you are suffering far too much when something can be done to make your life easier and give us our old Helen back.
Sending big hugs
LD x
Porkie
Member

Re: Bone mets - please join in

Helen I am so sorry to hear about your eve. I do hope yo are feeling a little better today. Please as the other ladies have said mention your pain to your oncologist, I am sure a shot of radiotherapy may help. Big hug and stay strong xx

pam01
Member

Re: Bone mets - please join in

Helen so sorry to hear how your night was ruined.

If you feel up to it it would be worth writing to the venue, telling them of your experiences from parking,walking, seating etc and say how upset you were.....they may tell you of alternative arrangements you can make..and may even try to make amends..........You must reveal all on thursday.xx

belinda
Member

Re: Bone mets - please join in

I have a folding wheelchair, I got it after I had chemo induced heart failure diagnosed and was in a bad way, couldn't walk far, end of the garden was a long way. And I have a small courtyard city garden. Some good, great heart meds are helping me to feel normal again and now I would only use it if I had to walk very far but knowing it's there, in the boot, is very reassuring. We all get wobbly days on chemo don't we? I was having some sit downs around John Lewis last week due to chemo legs. You can use the disability clause re VAT so mine wasn't too expensive. I think you can rent wheelchairs or perhaps borrow them too. Mine is only pretty lightweight for shopping malls, indoors and smooth pavements rather than cobbles and mountains but useful even when I can't remember the last time I needed it now. It's knowing it's there. X
geordiex
Member

Re: Bone mets - please join in

Is it no good getting a folding wheelchair for a short while ? The arena may have had some then you could have got dropped off while the car was parked, but you certainly need some expert advice into your pain xx

roxy12
Member

Re: Bone mets - please join in

Oh Helen, really sorry that you are suffering like you are. You must be firm when you go to your appointment on Thursday. You definitely need some tests. Like Belinda says it could be something that can be sorted by rads. You can't go on suffering as you are. I will be thinking of you.

Good luck. Lots of love Sheila. Xxx

JulieD
Community Champion

Re: Bone mets - please join in

Oh Helen I'm so sad reading your horrid experience of what should have been a lovely night. The old woman may be old but you quite probably are in more pain and less mobile than her so am sorry she was so unhelpful. As for the parking and stairs I wish venues were better for the disabled. I think it is hard enough for us but over the past few weeks you've been having a rough time and I'm sure this has built up for you. Sending you a big warm hug.

 

Hope everyone stays warm this weekend xx

belinda
Member

Re: Bone mets - please join in

Oh Helen how horrible for you. Do you have a Pain Clinic as part of your Oncology Unit? If not a unit some pain oncology specialists? Do ask for a referral asap if not completely happy Thursday. I saw my specialists a couple of years ago, complete agony I had put up for months with. Was put on heavy duty meds and through MRI it was shown the nerves travelling down my leg were squashed, had some rads to sacrum, for the second time. I was on liquid Ora Morph, Amitriptylin, Oxy Contin, can't remember if there was anything else. Anyway..my long rambling to say that was more than two years ago and some rads sorted out a big problem and, at the moment, I don't need any pain killers. A CT didn't show anything wrong at first but MRI did. Take Care, Love to All here. X
rosie53
Member

Re: Bone mets - please join in

Oh Helen im so sorry you had a terrible time and you were so looking forward to it. Please feel free to rant and rave to us ladies on here, i think you are right these last few wks have taken their toll with you, hope your onc can sort something with your back pain when you see him Thursday.
Hugs Janette x x
bertie1
Member

Re: Bone mets - please join in

Helen how awful for you we all need to vent sometimes with this **bleep**ty disease hope you're feeling better today sending huge hugs your way.
Kaye xxx
2catlady
Member

Re: Bone mets - please join in

Good morning ladies,hope we are all well.
Well,I went to SCDancing and had awful time. We went to car park,no disabled places left. So had to walk for miles in agony with back. Could hardly breath then had to walk up two flights of stairs and was gasping for breath,really scary. Then to top it off we went to get our seats and an old woman said I'm not getting up now I'm seated you'll have to step over me! I did this which pulled back. So sat in seat and I burst out crying! Seat was agony to sit on,so unfortunately we left at half time and I cried all the way home. Never felt so down before,I was so overwhelmed with emotion and is it all worth it.:( I think everything has just got on top of me these past few weeks . Sorry for the moan,just needed to vent.
Huge hugs,Helen xxxxxxx
bertie1
Member

Re: Bone mets - please join in

Morning ladies hope we are all doing ok.A lovely bright day here in Wales but very cold but I have to venture out at some point today cupboards need restocking ready for when my son comes home on 12th Feb getting excited now.Cold is getting better hope my bloods are ok this week so I can start my next cycle of pills.Hope you all have agood weekend.
Huge hugs
Kaye xx
2catlady
Member

Re: Bone mets - please join in

Good afternoon ladies,hope we are all okay.
Tracy that's absolutely shocking,it makes me so angry that they don't understand the stress we are under.xxxxxxx
Huge hugs,Helen xxxxx
Lucy_BCC
Member

Re: Bone mets - please join in

Hi cw, sorry you are having problems
We can change your sign in name if you send your new choice to moderator@breastcancercare.org.uk

Best wishes
Lucy BCC

stresshead
Member

Re: Bone mets - please join in

Good morning to all 'mets' ladies. Hope everyone is as well as possible and keeping warm...good excuse for duvet days anyway!!

I wondered if any of you know how to change your 'sign in name' on here. I've looked on profile and settings but no luck. Perhaps you have to contact BCC??

many thanks for your help.x

LemonDrizzle
Member

Re: Bone mets - please join in

Good morning everyone
Desi, that's awful. No one else knows what all the waiting is like and how our minds go into overdrive. Definitely get in touch with PALS - they are effective.
Natalie, I know what you mean about not working. I've been off 12 months now and don't have enough energy to go back. Looking at finishing, eek!
Bill-ben, I love springers - I've got a sprollie and she also hates any noises and loves water. They're great to take our mind off things aren't they.
I've had a sickness bug for the last few days but seem to be better this morning, looking forward to some proper food later!
Hope everyone else is as well as you can be.
LD x
rosie53
Member

Re: Bone mets - please join in

Hi Desi, how frustrating how annoying!!! They havent a clue what we go through mentally do they...arrgg as well as the pain we are dealing with. I agree you should go to PALS they are very good, we had problems with my mother-in-law a few yrs ago whilst she was in hospital and they were very helpful. Hope things get sorted for you soon.
Hi to all you ladies, hope everyone is keeping well it has been very quiet on here the last few days.
Take care hugs J x x x
Desi-2
Member

Re: Bone mets - please join in

Well rang the various departments to chase my scans and info session to start Cape shouldn't have to I know but at least I have them now. Info session 10th feb. Now in a lot of pain with my hips worse in the mornings but guessing this must be progression. If I hadn't had to wait so long maybe the Cape could have held it back! Definately speaking to pals about what's happenend even the BCN thinks I should. She says she's fed up with having to apologise for late appointments and waiting times. X
bill-ben
Member

Re: Bone mets - please join in

Hope you are all okay today enjoying duvet days if you need it.I do admire those of you still working I feel really well but get tired so would struggle to work more than a couple of hours a day. Because of my sight problem I would be a danger to myself and others as I worked in a tradional sweet shop selling homemade fudge which I would have to cut up. I think me wealding the huge fudge knife would be against health and safety regs! I'm sure no one would want the odd bit of my fingers in their sweet bag! The weather here in N. Devon is horrendously windy We went down the beach again this morning if I hadn't been holding on to hubby and my crutches the wind would have had me off my feet. I am no light weight so that was one relly strong wind!! Have a good day everyone.xx

belinda
Member

Re: Bone mets - please join in

Thanks Nicky. X
Sorry to hear some are struggling a little. Helen I am exactly the same as you, it takes a lot for me to contact the hospital, completely understand. X
Cannot believe this weather today, it's like living in a lighthouse here, rain and wind. X
rosie53
Member

Re: Bone mets - please join in

Morning ladies from a very windy Manchester
Started with this blasted cold again 😞 so its a duvet day for me, have rung in work to say i won't be in for the rest of the week. Seriously thinking about stopping work altogether, i work in a very busy pharmacy and am finding myself having less patience with it just havent got the energy some days for it, i only do 15hrs per wk now, but i am trying so hard to keep things as normal as possible and do still want to work just wish i didnt have such a stressful job!!!
hope everyone is ok today and is keeping warm
Hugs J x x
2catlady
Member

Re: Bone mets - please join in

Hi,chocolate xxxx thank you. I see onc next thu( if he's not on holiday ) I mention it to him. Still feeling rough,liver pain is worrying me 😞
Huge hugs,Helen xxxxxxx
Chocolates
Member

Re: Bone mets - please join in

Morning ladies, signing in for roll call. How are we all. This is such a busy thread now it takes me ages to catch up. Desi - what a pain about results - it makes me so cross. I do firmly believe that to most people we are objects with no feelings. It's just ridiculous.
Mavis it was lovely to see you post and Sheila too. So pleased you are both feeling much better. Has the lovely faraway been on. I may have missed her posting. If now a huge hug being sent to you and I hope you are doing as well as you can. When you're ready let us know how you are.
I've still got my cough - will mention to onc next week when I see him. I'm taking the action of oh it's not really worrying me but it is so will mention it and see what he wants to do.
Helen, how are you feeling today? I'm hoping that you're going to report to us that yu have rang your BCN or onc and explained how you are currently. You're suffering in silence and I don't like it. Please think about speaking to someone. We are all very concerned.
I know I've missed most people out so I'm so sorry. Work gets in the way!!!!!
Bevlaar - hope yure doing ok on your new treatment. Thinking of you xxx

Huge hugs everyone. Windy and drizzle down here in the south today. A good day for cleaning.

Take care,
Hxxxx
bill-ben
Member

Re: Bone mets - please join in

The waiting is the worst. I had a scan yesterday to see how things are doing but now have to wait two and a half weeks for next my appointment for the results.Trying to put it to the back of my mind so made the most of the good if not chilly weather today and went for a lovely walk on the beach with the other half and the dog. We have a rescue springer who loves chasing a ball or stick on the beach but she doesn't like noisy sea! She only likes gentle lapping waves nothing too rough so today was good for her. She also doesn't like loud noises of any kind either. She is five and we have had her for just over a year. We know there has been some mistreatment in her past life from her behaviour. Some people really should never be allowed animals it makes me so cross. Hoping you all have a peaceful pain free night.

2catlady
Member

Re: Bone mets - please join in

Oh,Tracy,I could say a lot of rude swear words for you to your onc,grrrrr
God don't these onc realise the stress they put us under. It not that you're waiting for a minor operation!!!! #%%€$¥¥€€>%(swear word)
I understand how your feeling,it's so frustrating and annoying .hang in there lovely lady xxxxx
Massive hugs and a huge kick up the butt to your onc,Helen xxxxxx
Desi-2
Member

Re: Bone mets - please join in

Disappointing clinic appiontment today. Expected to start Cape now have to wait another 2weeks for scans and info session to be booked Ahhh! Surely if the bloody onc had answered my phone call this could have all been done already!
2catlady
Member

Re: Bone mets - please join in

You go girl !Mavis,so glad you got out. Don't let this disease dictate your life. I have daffodils actually flowering in my garden and that lifted my spirits too. I love daffodils.
Huge snowdrop hugs,Helen xxxx
sivam
Member

Re: Bone mets - please join in

Hi Girls, well after my post I bit the bullet and went to Evening Mass, it was so energising to go out and meet with my friends who have sent so many flowers and cards, you are all right,I need to try and "normalise" my life now that I have some more energy. Seeing a few Snowdrops in my garden today has lifted my spirits as well, Thank you all xx Love and Light xxMavis

2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies,hope we are all okay.
Mavis,get out and live your life as the other ladies have said hospitals and gps are probably the worst place for germs. I carry small antibacterial gel with we at all times as it's germs from your hands that will probably enter body. I also carry small packed of anti bacterial whipes too.
I carry on doing everything I've always done ( often slower now lol) if someone has a bug or cold I don't meet them and my friends understand this .i go to concerts,cinema ,on aeroplanes I'm not letting this disease dictate what I do in the time I have left.
I'm off to SCD on Thursday ,yippeeeeee! If I sit next to a germy person I'll squirt them with my germ spray lol .
Hope everyone is doing okay and coping well with SEs.
Huge hugs ,Helen xxxxxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi mets ladies

I hope everyone is coping with their treatments and side effects and that new treatments start to work quickly, especially for you Bev.  Sorry if I forget anyone but as ever this is a very active thread - which is great, but means I forget things too quickly.

Mavis, I agree with JulieD, do start getting out a bit and doing the things that are important to you.  It is so isolating to have this condition so the more you can enjoy yourself and get out to talk to other friends and groups, the better.  As Julie says just be vigilant I suppose.  In fact the one place I picked up some bugs from when on Capecitabine I'm sure was the hospital!  Unfortunately I can't avoid that place Smiley Wink  The other things is to take some of the hand gel or wipes with you to minimise anything that you might catch , not all germs are spread by coughing.

Helen, I hope the pain is getting better and if not that you get some help with it.

Bev and Belinda, hoping you both are dealing with the SEs of chemo and coming out of the chemo bubble soon.

Sheila, good to hear you are feeling so much better, let's hope that continues.

Sorry I can't help with some of the questions about TMs and jaw pains as I don't have any experience of either.  The only thing I do understand about TMs is that they can be quite different from person to person and, if I'm correct, even the way the laboratory measures them.  As has been said its more the trend that the oncs look for.

To all those ladies I've not mentioned I hope everything is going well with you.  

Remember to all wrap up warm, it looks like its getting cold again, that's if you haven't got it already, brrrr.

Nicky x

JulieD
Community Champion

Re: Bone mets - please join in

Mavis, it is sensible not to put ourselves at risk of too many germs as our imunity is low BUT we do have to have a life too. I think you are just as at risk in the hospital sitting next to people coughing as you would be in church. I would say, be sensible, avoid those with obvious germs, if you meet up with friends or go to church steer clear of those with caughs and colds, tell people your immunity is low at the moment and that you won't kiss them or come too close but don't turn yourself into a recluse, that will just get depressing. That's my view anyway xx

 

Sheila, great to hear you are feeling almost normal and hope next dose is kinder to you.

 

Bev remember what your lovely BCN said to you, give this treatment a go and hope it's 'the one' for you. Try not to look on too many sites for info, sometimes it makes things worse - don't forget we are individuals and so different things will or won't work for each of us, plus of course statistics are out of date, unreliable ....

 

Law, I don't see why rads should affect your mums face/jaw unless the reads are close to that area, if she was on bone strengtheners I might have thought it could be them. Mention it to your team though and hope things go well for your mum.

 

Staying hopeful, try not to worry about your mums TMs too much, it is the trend they look at more than the actual figures, TM can be very reliable for some people and not for others. I have known women with TNMs in the thousands who have come down to double figures. If the scans are ok and mum is feeling no worse it might just be a temporary fluctuation, sounds like the onc is keeping his eye on things.

 

Steris, big hugs to you. Thanks for text. Keep strong my lovely we're all there for you - catch up soon xx

 

Helen, please talk to your team, it may be you've got a pincheed nerve or that your pain meds need a tweek but whatever it is needs checking out.

 

Hope everyone who is waiting for results or having treaments have a good week. Love to you all xxxx

 

LemonDrizzle
Member

Re: Bone mets - please join in

Good afternoon Mavis, don't think we've 'met' before! Keep away from those germs whenever you can but don't let it stop you doing things you enjoy and stay healthy.
LD x
LemonDrizzle
Member

Re: Bone mets - please join in

Good afternoon everyone
Hope you're all having as good a day as you can.
Helen, sorry to hear you're suffering- our minds make everything even worse don't they. I'm full of admiration for those who work too as I haven't got the energy to.
Sheila, reading old posts I know you've had a rotten time, so it's great to hear you're feeling so much better - long may it continue.
Belinda and Bev, hope the SEs are easier- have as many duvet days as you need and don't try to do too much.
I'm learning lots about TM from you all even though I don't have a clue about mine- it's just like being at school!
LD x
sivam
Member

Re: Bone mets - please join in

Hi Everyone, not posted lately but have diligently read all of your reassuring posts.I am still feeling good on Cape, but I go to see Onc on Friday for results of CT scan and cancer markers, feel that there is some progression in the rib cage because I am experiencing more pain.I use Paracetamol and co codamol as pain killers, but it is not quite hitting the "spot"Oramorph really messes my head!!

I was diagnosed last June and because of various Chemo attempts I was advised not to go to any social events because of germs. The only place I go now is many visits to the Hospital, and only about three trips to a supermarket, walking the aisles was very tiring.When I go to the hospital I am struck by how many people seem to be coughing and spluttering and I am beginning to feel I will be just as safe in the various groups I belonged  to in my local church,I miss them.At the moment I watch Mass online(my church has a webcam)and my OH brings me Communion, a Holy Take Away!! feel strong enough to go out again and want to say "to hell with the bugs that might get me".I am worried I might become an agoraphobic and OH is terrified of letting me out into the wide scary germ filled world.God what a rant from me sorry. xxLove and Light xxMavis

rosie53
Member

Re: Bone mets - please join in

Hi Shelia, nice to hear from you and pleased that have been feeling well....long may it continue 🙂 i am trying my best not to get hung up on my markers going up as it that last Sept but then went back down, think i am getting more stressed about it because i have had increased back pain!!
Helen pleased don't suffer in silence, get in touch with your bcn or onc, your meds might just need a tweek???
hugs Janette x
2catlady
Member

Re: Bone mets - please join in

Hi,normal ranges ar about 30 even none cancer patients have them! The cancer produces them when it's active and growing. Xx
Bevlaar
Member

Re: Bone mets - please join in

Yes everyones TMs are different. I believe blood stains in the TMs are produced from the proteins on the surface of the cancer cells and everyone produces different amounts of these proteins. Thats why some are in normal range in the 1000s and others are normal in the hundreds or less.
I think! xxx
2catlady
Member

Re: Bone mets - please join in

Hi,Sheila,glad you are feeling nearly normal. You've had an awful time these past months xxxxx
I will,go to hospital. I nearly rang last night as pain was horrendous and was crying with it. But much better today. I know it's silly I just think if I go in I'll not come out,silly mind games I know.
Huge hugs,Helen xxx
2catlady
Member

Re: Bone mets - please join in

Hi,staying hopeful,56 is not high,mine were at nearly 1000 and were going up every month.by 100.I had started at 28 when I was diagnosed. TM can go up and down but oncs look for a trend of them creeping up every month ( apart from mine whose an idiot)
Huge hugs,Helen xxx
roxy12
Member

Re: Bone mets - please join in

Good morning everyone. Hope you have all had a reasonable weekend. I have felt ALMOST normal for the past week. It is my week off chemo though and it is due tomorrow so we shall see?

Bev, I am glad you are feeling a bit more at ease with things. That nurse sounds great! She is right about the team discussions. I was told  a while ago that they had weekly meetings to discuss care etc. Stay positive for that holiday.

Janette, I hope all is OK with you. My onc doesn't seem to use TM even though we are treated at the same hospital. They are all different aren't they.

Belinda, hope the chemo stays doable. When I was on taxotere I think the first one was the worst although my legs became very heavy. No nausea though which is a big plus!

Helen, I am glad you seem to be a bit better but if you get a lot of pain again you must ring the hospital. Do they have a "hot line"?

When are you due back at the hospital?

Take care all of you. Love Sheila. Xx

StayingHopeful
Member

Re: Bone mets - please join in

Hi ladies, 

 

I posted last May as my mum had just been recently diagnosed with BC and bone mets together and found your posts reassuring. She's been on Anastrazole since and her CA15-3 markers went down from 65 to 17. The last 4 results have crept up and today we've found out her markers are upto 56 from 27. They had a scan done inbetween the last results and these and are happy with those and my mum is also feeling really good in herself. I know under 30 is the normal range but I'm just wondering a) how high can CA 15-3 go? Is 56 worryingly high? and b) has anyone had results that go up to this sort of number and then come back down again? It's still an unknown journey for us and we're all feeling a bit low after today's result so was hoping for some reassurance from someone who's been in the situation. The onc has said to stay on Anastrazole for the time being as her well being and scans are OK and tumour marker readings can fluctuate. She has regular zometa and takes zomorph daily to control the pain (she broke her back which is how we found out). 

 

Thanks in advance. 

2catlady
Member

Re: Bone mets - please join in

Hi,Belinda,thank you. Yes,have a duvet day too. I think we should all have a duvet day every week.
Take care and take is easy xxxx huge hugs,Helen xxxxx
belinda
Member

Re: Bone mets - please join in

Hope you're feeling a little better now Helen. X
Stay under the duvet Bev. I'm having a sort of duvet day too but I think my second chemo was a bit easier than the initial one last week. X
Best Wishes All. X
2catlady
Member

Re: Bone mets - please join in

Thank you ,janette xxxx yippee to getting off naughty step. Xxxxx
Bev,take it easy and have a duvet day you deserve it xxxxxx
Catch up later as just got out of bed,my god I take my hat off to you wonderful ladies that are still working xxxxxxxx massive hugs to everyone,Helen xxxxxx
rosie53
Member

Re: Bone mets - please join in

Hi Helen, nice to see your post this morning, glad you are feeling a bit better today, and as your are so good at posting and always making us feel better you are excluded from the naughty step 😉
Hi Bev, you take it easy today love and keep snuggled under your duvet today.
Hi to all you other lovely ladies hope you are all doing ok.
Hugs Janette x x