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Bone mets - please join in

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Re: Bone mets - please join in

The male onc has moved onto sarcoma they do a 6 month stint at a time the registrar I saw is a woman really lovely as I say I've never had an issue at the first sign of something I'm not sure about I ring them up and get advice or they tell me to go in and the Hospital does have WiFi x
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Thanks Belinda, I'll send her a pm. Xxx
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Re: Bone mets - please join in

Ladies, we mustn't do anything without permission from Helen as that would be wrong and potentially even more upsetting for her. I just know that someone has visited her and if they could visit again next time they are at the hospital that would be a huge help as she misses us all very much but I don't want that person to feel pressured. Not my intention at all as we are all different and handle things differently. At the moment we must carry on with positive vibes and lots of love and sitting with her whenever we can. Helen misses us all and we can all send her love and thoughts.
Once I hear from Helen I'll let you know how she is.
Hxxx
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Ladies , please add my name to the very cross and frustrated. Helen, my angry eyes are red raw.
Marie xxx
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Our posts must have crossed Geordie. Don't know if Helen has changed Onc r not but even if she hasn't there should be other Oncs that can see her in his absence, I really do not understand how this is happening to Helen but there is something terribly wrong somewhere

 

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Found it! Page 19, juliemo3 visited Helen.
X
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Geordie, Helen mentioned the registrar and said he was good but she hasn't seen him either since she was admitted this time. Just a junior Dr who was horrified on Tuesday that no bloods or urine done since she was admitted Thursday night. Other than that nothing. Just a nurse who keeps telling her things without backing anything up and then walking away.
How are you Georgie - we've missed you. How are you doing?
Huge hugs,
Hxx
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if we can find out which hospital then something can be done.  Contacting the local media could be a good idea....... or wrting to the Chief Exec of the hospital. Anything done would have to be with helen's permision though. Don';t want to do anything on behalf of Helen without her authority or permision. By the way does she have a partner who can help her out?   Helen when you read this: we are all concerned and angry on your behalf.  I personally feel frustrated on your behalf  so god alone knows how you must feel.  I hope you can feel all our best, best wishes xx SS

 

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I know there is a Julie that goes to the same hospital but not sure of her user name, I think it probably is Geordiex, I think I know the name of the hospital but don't think we are allowed to post that info on the boards.

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If her onc is the same as mine and she's just changed to him he just came back today and maybe not to work just from hols ,he had a sebbatical leave last year and I saw other oncs his registrars ,spot on my treatment from them I couldn't fault weekends and Bank Holidays are always less staff but there have always been Docs and oncs there I have been in a few times and I can't compare with Helens experience with mine I only have praise for them ,I am at a loss to know why its so different for Helen x
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Chocs, have just sent you a PM.
I know Geordie has said here she is at the same hospital. Will look back and see, yes someone did visit, see if I can find who. X
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Ladies, it truly is awful. I don't know which hospital she is at but it is a Cancer specialist unit - she is on the Cancer wards so surely someone should see her. I know someone from here popped in to see her last time she was in. Can anyone remember? That might help us to know where she is. Helen has a very broad accent and when I rang her it wasn't the best of lines so I didn't catch everything - she was tearful as well. No reply tonight from her - I'll let ladies know how things are once I've heard from her. I'm really upset about it - my cats are treated better than Helen. It's just not right and shameful.
Hxxx
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Natalie glad there was no hunting today but the chap sounds a bit strange, have never been quized like that myself. I have a port but my hospital won't/can't use it for contrast so still have hunt the vien. It is usually more uncomfortable than painful unless the canulla is deep, maybe that's why it hurt. Keep an eye on it though as there was one ocassion when the contrast leached into my tissue and arm swelled and was red, had to go to A&E but just told to rest it drink fluids and go back if it got worse.

 

I am so angry about the way Helen has been treated, or not treated! Surely there must be other Oncs there who could see he if her onc is not around. PALS is a good first step but I think an official complaint shuld be made on Helens behalf, maybe her husband could write to the head of ncology or even Chief Exec of hospitsl/Trust. I think there is a Maggies at that hospital maybe they could give Helens sister some advice?

 

pippie hope all went well for you and not too uncomfortable.

 

Best wishes to everyone on the thread xx

 

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Yes this is just terrible! I am so angry and upset for Helen. Are no Oncs doing the rounds in the morning? It would be quicker to be seen as an outpatient by the sound of things. Is Helen on a general ward or Oncology? No wifi at the hospital? I take my iPad in every chemo session, expect most of us do. I actually wonder if Helen might discharge herself and turn up at Oncology and insist on being seen? Accident and Emergency dept even? This is just so shocking, I could hardly believe they had missed, for weeks, her spinal cord compression. I know Helen doesn't want, like to complain but this is too important, crucial for her well being that she does now. Or someone on her behalf does.
X
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I am so incensed with this treatment of Helen. What can we do as a group of people? Does anyone have any ideas?  Bad treatment like this cannot go without anyone doing anything. Helen is far too ill to do much herself. Can BBC charity do anything. make a formal complaint... I don't know something. If anyone has any ideas I wiull sign  up for it. Personally I can't think of anything.  

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Hi ladies, Janette, so pleased that hunt the vein not necessary today but don't like the questions at all. Never had that myself. I'm nervous enough as it is before scans so would have given him short sharp answers like you. Would completely unsettle me. I have the contrast through my port which isn't painful so am sorry it was different for you. Pleased results are only a week away - it's always a nervous time. Hopefully you've got some things planned so the time will pass quickly. Pippie let us know how you got on when you're up to it. Fingers crossed the procedure wasn't too painful.

Stillhere, I'm up for being a guinea pig too. Anytime - you must be so proud of your son - what a difference he is making and will continue to make in the future.

Well it's a mixed bag with Helen. She's really down again and temp is up. She still has not seen an onc and is so fed up. She was going to discharge herself but thankfully has not done so yet. As there is time on her hands she is thinking up scenarios from what the nurses are saying and this is not good. Of course her onc is still on holiday. I spoke to her earlier and her sister was going in today and she said she was going to ask her to make a complaint to pals. I hope that has happened as her care is awful and so distressing. I'm appalled how they have treated her. It's fair to say she is very low. Ther was also talk about a team meeting today about the next steps for her but I don't know if that's taken place so can't feed back yet. She has no internet at the hospital and is really missing everyone so much. She just wants to speak with you all and see what everyone is up to. At the moment I feel very ashamed of the nhs and her care. She scarred and very frightened. It's all so difficult.

Anyway ladies please continue to send positive vibes and love to our Helen. She really needs them at the moment.
Huge hugs to everyone,
Hxxx
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Yippee veins behaved themselves today, got it first time, it don't half hurt when the dye goes up your hand, has anyone else felt it?? Well i got a right "jobs worthy" guy who gave me my contrast drink, i went straight from work and he asked the usual questions DOB and address etc he then asked if was an inpatient or outpatient...derr i'm sat here in my pharmacy tunic its a bit of a give away!! He then asked do i know why i am having a CT scan and do i know my dx? I said yes he then asked...patronisingly what do you know about your dx and do you want to tell me, i told him i did not want to discuss it with him!!! Grrr
Well both scans done with now, just results day to face next wk....yikes!!
Hope you are all ok and enjoying the lovely sunshine.
Hugs Janette x x
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Hoping you're feeling a bit brighter today Helen.
Janette, hopefully the silly vein game was over quickly and the scan was straightforward.
Pippie, hope they managed to put cannula in without too much hassle and that the biopsy went ok.
I'm not a baby person, so I'm not offering to help with the triplets yet but once they're a bit older count me in!
LD x
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Re: Bone mets - please join in

Helen happy you are doing better! 

Natalie good luck with scans and hunt the vein game! Funnyface

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Good luck to everyone having treatment this week, thinking of you. Helen, I hope you are home soon, I'm waiting for you to colour in Mr Ps portrait complete with embellishments!
Well I've spent all weekend knitting bootees for the Cornish triplets, only pausing on Sunday evening to watch Mr Gorgeous, no topless scything this week, shame!!
No, had a lovely sunny few days with my lovely sons, every moment is so precious. I hate to demand time with them when they are so busy. My younger one is hopefully pushing some borders with cancer immunotherapy research based at The Royal Free hospital in Hampstead, I've told him I'll be his guinea pig!!
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Morning ladies, just dropping in quickly today, hope everyone is ok, good luck Pippie with your biopsy.
Helen, thinking of you.
Well second round of scans today, CT at 4 and the trauma of hunt the vein!!!
Hugs Janette x x
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If your reading posts Helen hope you have a better day today and am thinking of you xxx
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Locking my aprons up Chocs. Helen's arm sounds painful. :-( I had a port fitted a couple of weeks ago, under local, honestly I have already forgotten it's there. I think ports are less fuss than the pic lines, less vulnerable to infection. Hope you're home soon Helen. The Poldark triplets will need a regular baby sitting team. Bear G is building them a toddlers tree house. X
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Hi ladies, Helen is a little brighter tonight. Temp is still down and she is now focussing on getting home soon - hopefully within the next few days if she contines to improve. She thanks everyone for their well wishes and says she can't wait to come back on and join us. I told her about pals but she said she doesn't want to rock the boat - perhaps it's something we can explore with her once she is back on. She needs to do something - the standards she has had to endure are appalling. Only problem now is her arm which is black and blue from all the cannulas. It's quite swollen and painful. Hopefully they will sort that out - she thinks she may have to have a picc line but will wait and see.
3n3 - sorry to hear you are struggling. I really hope the drs sort you out. It can be hard to pinpoint exactly which medication it is which is causing the symptoms but fingers crossed you get sorted out quickly.
Sheila, lovely to see you posting - how are things - how are you feeling. Bev I'm thinking of you - let us know when you can how you are doing.
Lots of love and hugs to everyone else. I hear on the grapevine that the Poldark cyber baby is due soon. I need Helen out of hospital so the duel can take place.
Dc is moaning about his minor op and gc says he is busy with a new project so under instruction from Helen I have hidden their aprons. If they turn up anywhere else please do not give them an apron. They need to go straight to the naughty step. I trust you ladies to enforce this!!
Hxxx
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Re: Bone mets - please join in

Hi Ladies - thank you to all who have responded to me and making me feel welcome.

 

Thank you for the link to PALs and it is certainly something I will be looking into, and I'm gong to ring my Onc's office to ask for an appointment to be put in the diary ASAP.

 

I have my lung biopsy tomorrow but was a bit concerned today when the nurse phoned me to discuss my procedure tomorrow.  He asked if I was ok to have my blood pressure taken from my leg, when I asked why he said 'as we can't use your arms' - I had to explained that it was only my left arm that couldn't be used, he said 'oh good we can put the canula in the right arm then' - i'm so glad that is is only a local they are doing and I can see what they are doing to me.

 

Hope everyone is enjoying the lovely sunshine that we are having.

 

Take care all 

 

Pippie Smiley Happy

 

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Hi Belinda, true, the consent form I signed to have rads did say sickness and diarrhoea, although the word sickness, the doc put brackets round as he thought it wasn't 100% relevant.  So much going on, not sure what casues what lol.  Tine x

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Re: Bone mets - please join in

Hi Tine, I haven't had Faslodex but I have had rads to the same area and was warned about sickness, nausea.
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Hope Helens new onc is is much better than las  last one. Hopefully she will start to  feel  better give her  my love and massive  hugs! Xxxx

A big welcome to Pippie.xxx

Thank you chocolates for keeping us up to date. Xxx

 

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Hi ladies,
Good to hear Helen is feeling a little better today....long may it last.
Hope everyone is ok on this glorious day :-)
hugs Janette x x
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Although I don't know Helen as I'm new to this thread it's still good to hear she is been seen to now and hopefully improving.
I had my ninth session of rads to spine / pelvis today, another six to go. I suffer from terrible nausea and loss of appetite. Wonder if its from the Faslodex last week or because I have taken four weeks of ibuprofen (with omeprazole though) or is it rads? I'm going to see a couple of doctors this week, maybe they're is something they can give me.
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afternoon ladies what alovely day love the sunshine.Only now catching up with posts as I've been away to the caravan on the weekend.Chocolates thanks for the update on Helen,sorry to hear she's back in hosp but now she's seen the doctor they will hopefully get her sorted ,she's been having a rough time lately send her all my love .Hope all you other ladies are ok this thread is quite busy lately,Well I've done lots of washing today and cleaned the house but my son gets home tomorrow after atrip to Australia so I'm sure he'll hve plenty of washing for me to do .Hope you all have alovely afternoon
Take care all
Kaye xxx
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Ah now the sun is shining, it has been big grey skies here over the weekend.
Hope Helen is now going to feel stronger and can be home asap. She must be so fed up with hospital life. Sending cyber M and M's, Elsa dresses and colouring pens via all her hubbies. XXX
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Thanks chocolates for your usual update. I have been thinking of Helen over the weekend and how frustrated she must be that a doctor hadn't seen her let alone an oncologist. It must be a huge inconvenience to the NHS that anyone gets taken ill over the weekend, grrrrrr. Angry eyes!! Also it's incredible that, as this happened last time, there hasn't been a strategy in place. Anyway, I hope she is on the mend so please pass on my thoughts and I hope that something can be done about this reaction or whatever it is to the chemo.
Hugs to Bev as well, I have been thinking of you. I expect you must have some busy times coming up wi rads planning so please know that we are all thinking of you and holding your hand.
Welcome Pippie to the secondaries part of the forum, somewhere that none of us wanted to be in :-( We do however understand exactly how you feel and how frustrating this time can be before you have a definite treatment plans and that your team is dragging its feet. It could be that they have not been able to perform a bone biopsy therefore looked at doing a lung one, which in itself can be difficult. I hope you get some answers and a plan soon but keep coming back here and asking questions, someone is always able to offer their advice and support.
Hi to everyone I've not mentioned, what a change in the weather isn't it? Does make you feel a bit better though when the sun is shining and the flowers are out, hope you all hd a good Easter and just enough chocolate ;-)
Nicky x
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Morning ladies, lovely day here again. Hope the sun is bringing some much needed cheer to us all. Hope everyone is doing ok. Well I think our lovely Helen has turned a corner. She is feeling a bit better this morning. The Dr has been and changed her ab to try and get rid of this infection. Temp still spiking but I think it's good news thwt Helen feels better in herself. I said I'll check in later with her to see how she feels.

Huge hugs everyone,
Hxxxx
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Good morning everyone...

Pippie there will be PALS at your hospital, i am sure that they are at all hospitals. It is a liaison service for patients. I have used them once a couple of years ago and they were very effective. I had phone calls and explanations quite quickly. If you don't know their number then you can ring the hospital switchboard and ask....my BCN gave me it......just to tell someone all of that will help and I am sure that they will clarify things with the different departments etc. you will also, as you have already find support here. Let us know how you get on.
Chocolates, thanks for the updates on Helen, bless her, this 24hr Nhs those politicians keep talking about can't come quickly enough.....surely she will see a doctor soon. ..... And as Belinda suggested PALS may a help for her.
Best wishes to everyone else, hope you all had a good Easter.....we have sunshine here in Yorkshire.......
Highlighted
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Hi all just hopped in to say happy Easter to everyone and hope all enjoyed the lovely weather we have had and stuffed full of chocolates xxx
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Hi Chocs, I actually thought of PALS for helping Helen, especially as she is in hospital right now. Link here,
http://www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68&SubCategoryID=153
Has no doctor visited yet??!! Thanks, as ever, for keeping us in the picture. X
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Morning ladies and a big welcome to pippie. This group is amazing and hopefully you'll be posting lots and not worried about joining in. Sorry to hear about your experiences - other ladies might be able to help me but isn't there something called pals at each hospital who you can go to to complain. This might be worth looking in to as each delay causes more stress and worry. You have enough to cope with at the moment without dealing with all this. I hope you find some answers this week.
Hello everyone else - lovely day here - sun is shining - washing out - lovely. Well Helen is still very poorly - but seems a bit brighter today in herself. She is really hoping that a Dr comes to see her tomorrow as abs not working yet offering nothing else. Fingers crossed things change today and she gets through this. Don't really know what to suggest next - she's already changed her onc and her hospital but still very poor care. Any suggestions to pass on gratefully received. As ever she sends her love and has thanked everyone for coming to cyber visit her. She says she can feel our strength pulling her through.
Huge hugs everyone,
Hxxx
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Hello and welcome Pippie
There are other ladies who have similar experiences to you when it comes to being messed about with appts, scans etc so feel reassured that you're not alone - it doesn't mean it's right though and don't be afraid to chase things you need. If youre not feeling upto doing it get someone else who won't be fobbed off to do it for you. Nobody else understands how awful this early stage in the dx is and that you need to know exactly what you're dealing with.
Helen and Bev, hope you both had a good night.
Hoping everyone else can enjoy the bank holiday and carry on eating all your Easter goodies
LD x
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Hi Pippie and welcome to the BCC forums where I am sure the support will be a big help to you

In addition, our helpliners are on hand with further practical and emotional support on 0808 800 6000 and lines re open tomorrow after the BH 9-5 weekdays and 10-2 Saturdays so please feel free to call to talk your concerns over

Here's a link to further support ideas and information about secondary breast cancer on the BCC site:

https://www.breastcancercare.org.uk/secondaries

Take care
Lucy BCC
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Pippie, please excuse my manners. Welcome to the forum. We are sorry you have had to join us. I have found so much support and friendship in the short time I've been on the forum. Mxxx
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Re: Bone mets - please join in

Hi Pippie, sorry you have had to join us but welcome, hope we can help support and advice you on dealing with this horrible disease.
I think so far you have been treated terribly, these people have no idea what this dx does to our heads (mind games) you need some answers and a treatment plan in place so you can start dealing with it. My primary was 2007 and mets dx in March last yr, i had bone biopsy on my spine to confirm the dx, i am now on tamoxifen, zoladex injections to put me into menopause and denosumab injection for my bones/pain.
Do you have a husband/partner who could help push things along for you as im sure at the moment your head is all over the place and aqte struggling to deal with it all, unfortunately there are a lot of us ladies on here that have had to kick and scream for treatment/scans etc.
Hope you get some answers soon.
Hi to all hope you have had a nice Easter with plenty of eggs :-)
Helen/Bev sending you love and hugs.
Janette x x
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Hello lovely ladies, hope you all had a good Easter. Have eaten far too many hot cross bunnies, sorry buns and chocolate.

Helen hope you had a comfortable night, Bev thinking of you.

Pippie,I'm sorry to say that your expeirnce doesn't appear unusual. I have had treatment and operations cancelled the day before, after being told that they were absolutely essential. It is difficult to handle when you are feeling so vulnerable. Also phone calls not being returned, I just won't go there. Hang on in there , keep asking the questions . Write them down so you don't forget what you want to ask. Good luck.

Janette, I too am going for some help with the big C this week. So good luck with your appointment.

To eveyone having a difficult time be gentle with yourself.

Take care

Marie xxx

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Hi Ladies - I hope you don't mind me joining you, I have been in the wings for a fortnight reading your posts, plucking up courage to join in.

 

I was orignally diagnosed with BC primary in March 2012, then diagnosed with mets to my spine, ribs and lungs at the end of January this year.  So far, I don't know a lot about my diagnoisis due to being messed around with appointments etc.  I was told originally that I was to have a lung biopsy, this was then changed to a bone biopsy to my spine, this was cancelled the night before I was due to have it - due to a problem with my blood, to which I still don't know the out come of the blood test done on the 11th March nor my lung function test done in February.  I rang my BCN and asked her to have this discussed the MDT meeting which it was on the 25th March - I am now booked in to have a lung biopsy on the 8th April.  I have had 3 treatment planning appointments with my Onc that have had to be cancelled, as I haven't had a biopsy on my lung yet, and there isn't one booked as yet.

 

Please can you tell me if I am alone in being left hanging around like this, as I feel I have been given information that I can't do anything with, and nobody to discuss it with (I haven't told many people and don't want to until I know what I am dealing with). Smiley Sad

 

I hope you all have had a lovely easter, and eaten too may eggs.

 

Pippie

 

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Sorry to hear this Chocs. With it being the long weekend it must be even more frustrating. I hope Helen gets the care and attention she needs and asap. XXXX
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Hi ladies, Helen is much the same and has appreciated everyone popping in today as she is very down. She's frustrated with the lack of drs etc and pace at which things are happening. I've told her we are all sending her strength and positive vibes for which she is very grateful. I'll update you in the morning.

Hope everyone has had a good day and managed to enjoy some quality time - be it with friends or family.

Huge hugs,
Hxxx
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Chocolates, thank you for keeping us up to date about Helen, and sorry to hear she is still bad. Hoping with everyone else that she improves today. Bev, thinking of you too, and all other ladies. So sorry I can't remember everyones names, and forgive me if I don't mention your name, but I am still thinking of you all and wishing you all the best. Gentle cyber hugs to all who can bear them, and cyber-sitting with Helen for a little while (keeping very quiet so she can sleep and repair!). Hugs, Barton.x

Jam
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I am the same Lynnq not always sure when to add post but always try and keep up with what's happening. Usually just send hugs cos we all know all our sentiments are similar. Keep adding your thoughts Lynn. Have a lovely Easter xJanetx
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Lemon drizzle thank you. I hope the fatigue starts to ease now.

Nicky, I was on 4mg am and now on 2mg for one week then stop. Hope your scan goes well.

Julie thank you. Yes the fatigue is the worse. 

Belinda, hope you're feeling better after your transfusion. My daughter will be round shortly and will spoil me I'm sure.

Funny face, thank you. Hoping by next I will feel much less fatigue.

Chocolates looking forward to feeling better.meanwhile eating well and enjoying food..

Lynn, thank you for your good wishes hope you're doing okay with treatment.

Jeanette hope they sort you at the Beachwood. It is really important. To have the right care.

Bev, hope you are feeling much better. My onc says that he has several patients 4to 5 years post wbr who are still doing well.

 

Hope I haven't missed anybody out. Wishing you a a very happy and trouble free Easter.. Hope I  don't lose this post!

 

Lots of love to each and every one of you xxxxxx

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Happy Easter everyone. Hope you've all been visited by the Easter bunny and can enjoy the eggs and hot cross buns on this lovely day.
I'm popping in to sit with Helen taking a great big M and Ms Easter egg for her to enjoy when she can. Looking forward to seeing Chocs and some of you as we all visit and hold her hand.
Bev, Sheila, Janette and Faraway, you're not forgotten - hoping you're all feeling stronger today.
LD x