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Bone mets - please join in

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Good to see you here Bundy. I hope the rads will help both pain and mobility wise. Take Care. X
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Hi there ladies.  I have been off the air for these last few weeks, so have spent a little time tonight catching up.  Hope everyone is getting on with getting on.  Last time I posted I was awaiting a PET scan and wondering how on earth I was going to physically get into the car to get to the scan.  I managed - wheeled office chair and a lot of ingenuity got me there.  Before the results came back, I ended up in hospital with high calcium - 10 days in hospital, and have had this last week at home trying to get rested.  Both the high calicum and the PET scan showed extensive spread to the spine, so no real shock, but I had secretely hoped it would be something else entirely.  I have recieved one blast of radiotherapy to the upper spine, now waiting for an appointment for the lower half to be done.  I want it all done now!  But there seems to be a lot of waiting.  My onc says we will see how radiotherapy goes and then maybe look at a chemo trial (gem carbo?) I will have to do some research.  My pain is being managed better now.  I get about with a zimmer frame, and have made a few adjustments at home to manage.  take care everyone, 

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Thank you ladies xxxxxx I've just said that to hubby about ringing onc secretary. I'm at GP tomorrow so I'll see if he can add some clout too. Ladies you are all wonderful xxxxxx huge hugs xxxxxxxxxHelen xxxxxxxxx
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I agree, a good idea to bypass this BCN and ring Onc's secretary or failing how about your GP? All you need is literally minutes to collect your tablets. Any side effects usually take a few cycles to develop so this is long before the possibility they might take up any further time. This BCN seems to be on a mission to make things difficult. Completely unsuitable for the job.
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That's a good idea Pam my onc secretary has been very compassionate and helpful the couple of times I have rung her and quite knowledgable too. X
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Helen

I agree with Pam - I have always found my oncologists secretary very helpful. If you have no joy from this then I would visit the hospital PALS department and complain to them. Whilst nothing to do with cancer I needed to complain to PALS about hospital treatment for my mother in law years ago but they sorted out the problem for me in a day so it is worth trying this route to. Dont give up - we are all here for you.xx

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Good idea Pam. Helen this seems like a way forward - hope you feel strong enough to action. Perhaps your husband could ring if you don't feel up to it. So awful - you so don't deserve this. Hopefully tomorrow will be a better day. xxxx
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Hi Helen. Im on my mobile Cos hubbie broke computer(don't ask!). So short answer! But have u thought of bypassing her and going to consultant secretary....say he recommended 2 courses of treatment...your having probs sorting and could she contact apps/ward manager to sort for you...my oncs sec is very helpful when I need something sorted. Her attitude seems appalling.xx
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Helen is there anyone you can phone tomorrow who could get something done for asap? That hospital and that nurse need to be sorted!! Yours and other people's lives are at risk because of them.

I haven't been on cap but from what the others have said, it should be easy for them to get you sorted before then. I think they are actually being as difficult as possible with you. That nurse should be you advocate not your enemy for goodness sake. Take your complaints to the board. I'm getting angry now and I'm ever such a calm person really, HONEST.

Love Sheila. Xx😈

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Helen..I wished I lived near you to give you a huge hug and maybe come to that hell hole they call hospital with you! I really hope and pray that its not as bad as it and not spreading too fast. I hate that BCN with a vengeance btw!
Lots love to you and stay strong!!
Bev xxxxxx 💖💖
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Sorry meant to say hoping to join live chat tomorrow...not tonight lol! Xxx
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My hubby has just said he thinks it's awful that they are being so awkward and know why our holiday is so important now and surely they have five mins or can tweak appointments. I go for bloods at 4:30 and the ward is empty! ?? I think it's BCN being awkward,god I really detest that useless woman. Everything's a fight to get any kind of decent care from that place.
Smiley Sad Smiley Sad
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That is just so shoddy of them Helen. You deserve SO much better. Shocking. :-( x
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Omg Helen!!!!!! As iv said before that hospital wants bulldozing, its so unfair ever single dealing you have with that hospital turns out to be a nightmare, so sorry for you.
Love Janette x x x
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Hi helen and Tracey...sorry youve had some spread. Its never the news we want to hear. But when I go for my cape I get called in for bloods then get weighed and then go in to see onc. Asks how ive been, any s/es etc and then looks at the computer at my bloods and if all ok gives me a slip to go to pharmacy to collect them. So cant see why they cant make it that easy for you.
Tink...good news for you though☺ keep it up!
Hoping to join live chat later xxxx
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I know Belinda ,I don't understand either ! It's because they haven't got time to fit me in for pre assessment until September 2nd !!! I said its a five minute job! I'm even in for bloods for my zometa the week before but apparently I still have to wait. The whole thing has just totally knocked me . I was thinking at least ill get two cycles in as my cancer is very aggressive and has spread like wild fire. Smiley Sad I've argued with them on phone but apparently because I'm going on holiday it's my fault.
Xxxx
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I don't understand Helen, you should not even need a chemo chair on the ward. I used to collect the tablets from the office of my Oncology Nurse. This was the same for all the patients on Cap. She would say any problems, I would generally say No. She would have already ordered up the tablets from the hospital pharmacy and would give me them, after counting them out, along with a prepared blood form for me to get my markers done just before the next cycle. On straightforward appointments I would be out in 5 mins. Never saw my chemo ward in all the 4 and a half years on the tablets. Surely the least they can do is tweak things a bit so you can get 2 cycles under your belt??? X
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Chocolates that's made me laugh!! The chair thing! Xx

Lovely to see your okay Tink think we may have crossed posts on FB xx

Sheila hope you manage to have a nice birthday pending results xx

Thanks for your positive words Helen we both best get the results we want or there'll be trouble ..
Much love
Tracy xxx
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Hi,Tink ((())) crossed texts. Fantastic news regarding lung mets xxxx so glad you have had some good news.
Stay strong ,huge hugs,Helen xxxxxxxxx
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Hi,Sheila,so glad you are feeling a bit better. Ginger is really good for sickness,in any form! I wonder is alcoholic ginger wine works hmmmm Smiley Happy lol. Thanks,Sheila xxxxx 9 years!! Wow! I was panicking I'd not see Christmas .
It's a good job she phoned or I'd have slapped her, I felt as I was getting blame ! I think onc wards should be open on bank holidays. I wonder what would happen if police or firefighters said they were off on bank holidays! Oh I'm angry now!

Is Tink on holiday? I was just thinking about her too. I hate it when people go quiet ,I start to worry about them too.

Chocolate,glad you got changed,gritting teeth ?? More chair dramas?

Tracy,it WILL kick its butt right out of you. Recharge your batteries on your holiday. Stay strong you can do it,and we are all with you holding your hand.
Well lovely ladies,stay strong,huge hugs to everyone of you wonderful ladies,Helen xxxxxxxxxxxxxxx
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Hello Ladies,

 

Haven't been posting much as my brain can't keep track of the thread but I try to read through.  Had a scan after three FEC and the lung mets are 'almost completely resolved with a few tiny ones left in the upper left lobe' so am really pleased. It's the first bit of good news since I was diagnosed in January.

 

The FEC has caused a slight problem with my heart and blood clotting so am on daily injections of blood thinners (and I'm not very good at it) but minor compared to improvements.

 

I hope everyone is doing well and Fawlty Towers have pulled their finger out for Helen.

 

To those who are off on holiday - have a great time!

 

Those with appointments and scans - good luck and everything crossed.

 

To everyone - hope you are all doing well.  You all brighten my days even if I don't post.

 

Tink x

 

 

 

 

 

 

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Hi Tracy,

Sorry to hear about your news. My lung mets have remained the same for three years now and I have had two lymph nodes in the lung area which are enlarged but too have not changed in about two years so try to remain positive.

I had fec in 2008. I was nauseus but managed to carry on with most things. I just made sure I went to bed for a couple of hours when I was tired. Pampered myself I did.😊 

Just make sure you spoil yourself. I'm sure it will kick butt.

Lots of love. Sheila. Xxx

 

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Hi chocolates, I am actually feeling a bit better today thank God! Still tired but not as bad. Nausea much better. Been chomping on the old ginger biscuits. Don't know if it is them but I do like them.😀 I will wait now to see the onc. The last time I saw my g.p. he seemed to forget that my BC was secondary. I was there because my onc was putting me on anastrozole and he thought my g.p. might want to see how I was doing as I hadn't seen him for a while. He wrote my PX and then asked if I was on these for 5years now?

! I said I was on them for as long as they worked. He looked a bit sheepish then as if he remembered.

Anyway thanks so much for your concern. I will be on with my results on Thursday. It's my birthday so the news had better be good!

 

Take care. Lots of love Sheila. Xxx

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Hi Helen, I'm sorry to hear your news but keep positive! I have read of a lady who was diagnosed with multiple lung and liver mets 9 years ago and is still going strong. How many do we not get to hear about? You must change onc though. That bcn needs a hard talking too as well. She is trying to put the blame on you.

It's because of them you need the holiday more than ever! Stay strong Helen. 

Lots of love Sheila. Xxx

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Tracey I was wondering about Tink also. Hope you're ok Tink - let us know when you can xxxxxx
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Helen, so sorry to hear you news and then the conversation with the bcn. Stick to your guns - say onc said two and say you are going to ring the onc. I appreciate they are busy but still they will have to fit you in. It's their problem not yours. I'm at the point where I want this woman's number. I need to tell her a few things which she won't want to hear but has to be said. Stay strong Helen - I suppose there's always a phone all from the hospital to get you out of a teary mood into one of astonishment and anger. Perhaps they do it on purpose!! Sending huge hugs Helen xxxxxx

Tracey - so sorry to hear your news. What a shock that must have been however although I haven't had FEC a lot of people report positively on the effects - take faraway for instance. It is harsh for some people but you can do it. We are all here for you and holding your hand. Enjoy this time now before you start - perhaps plan some trips out with family and friends and of course you've got your holiday to look forward to. Remember if he was really worried he would have said no holiday. I hope your cold clears up soon - summer colds are the worst. Also I've got my fingers crossed that your pip will come through soon - that will help when you stop working. I decided to stop for my docetaxol - it was the right decision but I did get ssp but still things have been very tight for us. Having a regular wage is important - oh kept asking me when I was going back!!! He asked me this more than how I was feeling. Typical isn't it - I think our oh's are well suited - the trouble is if they met they'd both want the same chair - they'd never got on!! Rest Tracey and try not to worry too much. Concentrate on recovering from this cold packing for yr holiday. Huge hugs to you xxxxxx

Hi everyone else - hope you're all ok. Managed to get my treatment moved to Thursday this week so ok for weekend. Family celebration this weekend - gritting my teeth already.

Julie - thinking of you today. Hope it went as well as could be expected.

Huge hugs xxx
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Does anyone know how Tink is doing ?

Thank you for your kind wishes everyone. Xxx
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That's terrible Helen what an attitude!
Xx
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Thank you ladies xxxxxxxx thank you Belinda .,I will thanks xxxxx
BCN just rang she said ward too busy because of bank holiday to fit me in until September 2nd so I'll only get one cycle then a four week break because I can't take pills on holiday.I said onc said I'll get two in. She said it was my holiday causing problems and if having chemo was important to me cancel my holiday!!!
I'm gobsmacked !
Desi,huge hugs,thinking of you xxxxx
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Hi Tracy, sorry to hear of your spread, stay strong and as you say you kick butt to the little rotter!!!
sending love and hugs Janette x x
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Helen we are all allowed a down day even you! No brain mets is fab news. It is good you have your holiday all booked and getting 2 sessions done before you go, just concentrate on your holiday and making us terribly jealous with all your travel tales.
Tracy I have had FEC it is harsh but us ladies can handle it and it will kick butt, good luck with it all.
Love and hugs to all xxxxx
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Helen no need for apologies, we all have down times. We are only human after all and we all cope amazingly well with this.
That is good news your head scan was all ok. I'm guessing you already know of the Xeloda, Capecitabine threads. I hope you find it an ok chemo and anytime you think I might be useful, I was on it for a few years, do PM me anytime.
Good Luck Desi, not had FEC but I have read of good results with it.
X
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Helen so sorry to hear of all your spread hopefully the Cap will kick it back. Xxx

Found out today from the surgeon who removed my lung met that there is evidence of the cancer spreading throughout the lung and into the lymphatic system! Poo !!! My oncologist didn't mention this just that it is now time for chemo but this explains why the dreaded FEC IV the nurses have warned me it is a harsh chemo but at least I know why now. Hopefully it will kick butt!
Good luck to anybody else with appointments this week.
Much love
Tracyxx
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Hi Helen, aww sorry to hear of all your mets, stay strong girl!!!! Hey we are all entitled to have our down days to lick our wounds but i know happy bouncy Helen will be back soon :-) you just keep thinking of your trip to Florida. Have you now got a new Onc??
take care love an hugs Janette x x
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Afternoon ladies,sorry no post yesterday just had a crying feeling sorry for myself day.
Just back from onc he's putting me on cap just waiting for pre assessment appointment so I can get two cycles in before my holiday. MRI on head showed no brain mets but plenty of mets in lung & liver and whole spine ,pelvis now with mets. No wonder I've been in so much pain.
I'm going to pack my case to cheer myself up. Sorry I'm not I'm a happy mood today,I'll be my chirpy self soon,back with weather reports.
Huge hugs,to all the lovely ladies,Helen xxxx

JuileD,thinking of you today,all my love xxxxxxx
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Hi again Chocolates just read your earlier post. I'm to start FEC chemo on 18th September struggling with colds at the moment tho. He agreed to let me have my holiday the week before but no news on latest bone scan yet. Very apprehensive about the chemo but something has to be done as the letrozole is not an option anymore. Going to look at wigs this week! Just had a short pixie cut and actually really like it so I'm going to stick with that style. I've decided not to try and work whilst on it as the company I work for run a sickness scheme whereby if you don't take sick leave you get a bonus. So everyone goes in with their various colds and bugs. Hoping my pip will come through in time and I'm assuming I will be able to get signed of for SSP as no sick pay at work either.
Much love Tracy xx
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Hee Hee Chocolates I do the same thing xx
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Sheila - it takes a long time to reply sometimes so I think we did crossover in our posts. Really sorry to hear you're still not right. I agree with you - if you can wait to see the onc then that's best but please if it gets any worse then see your doc as an emergency. You shouldn't have to feel like this.

Bev - I love it Lord Fawlty - resident at Fawlty Towers. It's just sickening really that anyone should have to put up with it. Helen you tell him tomorrow - don't hold back. This is your life. Go for it - we are all here for you.

Janette - live chat can be difficult to get onto so glad you have back up from your daughter. You need to register again for live chat - most of us use the same username and password for this site as it makes it easier but just letting you know in advance as this can take up a bit of time. It's a bit manic once you're on as everyone is posting at the same time but you get use to it. The time certainly goes quickly. Look forward to chatting with you xxx

Julie - how are you? Any news yet re your scan? Hope you've managed to have a fairly decent weekend. You are such a strength on here - always managing to comfort and advise in such a wonderful manner.

Kids are away again this week so just me and the oh - Tracey he's pleased that he has his seat!!! He's sitting in it now oblivious to me typing away about him. Ignorance is bliss eh?!!!!

Huge hugs everyone,
Hxx
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Hi Chocolates, i'm good thanks, nice to see you posting, i'm going to give live chat a go on Tuesday i'm not sure what you do but luckily my daughter always stays in on a Tues so she will help me...i'm not very good with technology!!!
Good night ladies love and hugs Janette x x x
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Seems like a few of you have appointments coming up...good luck to all if I've left anyone out. Cant use the view posts button on my samsung phone.
Chocolates..always lovely to read your posts xxx
Bev xxxx
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Helen...good luck with with the great Lord Fawlty tomorrow! Will be thinking of you!
Sheila...hope all goes well for you too Thursday x
Desi...yes I thought it was our lulu because she replied to my post in relation to the steroids I was taking. She said she had taken them but for her brain mets not the lung. Someone then asked her when the new baby was due and she said October and that she was goingbto try and attach a copy of the scan of the baby boy ...and that rung a bell with me. So ive asked her is she lulu that posts on bcc. She seemed well anyway and looking forward to October xxx
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Hi chocolates, we must have been posting at the same time! I still feel really tired  and nauseous. Its getting me down to be honest. 😣 Still I see the onc on Thur so am hoping he will prescribe something magical. I popped into the doctors on Thursday evening on way for my scan. Asked for appointment but next one was 3rd of September! I can phone up on the morning for emergency appointment but I think I am better off waiting to see onc. 

Hope things are OK with you. Will let you know how Thursday goes.

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Hi Helen, 

Good luck tomorrow. Will be thinking of you. Hope everyone else is coping. Still feel pretty crap hence not posting much. See my onc Thur for results of scan so we shall see what he has to say.

Still thinking of you all though.

Love Sheila. Xx

 

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Evening ladies, have been reading posts but lots going on here so not really had time to reply . Such fantastic news re Bev and pip. So so pleased.
Helen, hope you're resting up properly. The rads can knock you for six - I had 30 sessions first time round. By the end I was sleeping much of the day. Apparently a quarter of my right lung is damaged as a result. We knew the risk and thought doing the right thing at the time - then of course the uggers came back. Hindsight is a great thing isn't it? You look after yourself and I hope appt with basil brush goes ok. What a nightmare for you but fingers crossed you get some answers xx

Faraway how awful to get that letter in the post. I see what Pam is saying but the shock on top of everything else we are trying to deal with must have been awful. I'd be exactly the same - seeing my gp Wednesday - I wonder if he'll mention it to me? Anyway - hope other than that you are doing ok. Thinking of you xx

Mavis - really hope you are beginning to feel a bit stronger. A change of treatment is clearly what you now need. I'm sure there are other effective treatments so just concentrate on getting yourself stronger. xxx

Janette - how are you - how are things going? Hope you are doing ok

Welcome to the newbies - Ethel and Carolsav - you've joined the most wonderful group of ladies who are always willing to help and support. I'm sorry to hear of your recent dx but you've come to the right place. xxx

Tracey - how are you? Any news re your scans etc? Was thinking of you the other day. I hope you're doing as well as you can xxx

Sheila - are you beginning to feel a bit better? Was worried about you last week. I hope you've managed to regain some of your strength.

If anyone is able - live chat on Tuesday night. Will be good to catch up.

Hello everyone else - really sorry if I've missed you out.

Huge hugs to everyone. I love this community - gives me such strength.

Hxxxx
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Bev yes it is the same Lulu she hasn't posted for a while hope she is ok.

Best of luck tomorrow Helen xxx
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Evening all, not been feeling to well today think It was something I ate yesterday! Apart from that my head is in a better place, its nice to know that I am not the only one who has scary moments with the reality of this disease Janette.
Bev Dubai you lucky lady I am so jealous enjoy you deserve it Smiley Very Happy
Helen hope your onc app goes ok tomorrow, will be thinking about you x
Belinda, Julie and everyone else thanks for your support.
Love and hugs to all xxxxx
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Hi Helen, i missed you this morning, sorry to hear your having a down day love, hope you can shake it soon, good luck at Fawlty Towers tomorrow, sending you a BIG huge.
Bev thats a price for insurance will try them nxt time, i got one quote from somewhere that was £1,260 hahaha
Janette x x x
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Yay good for you Bev. :-)
Helen sorry to hear this. Hope tomorrow is a better day for you. X
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Omg! Bev,that's fantastic you go girl xxxxxx get that bikini packed or seeing you're on a spending spree get a new one lol
Sorry no post this morning,head is not in a good place today .Seeing Basil Fawlty tomorrow . Catch up later.
Huge hugs,Helen xxxxx