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Bone mets - please join in

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Ah Marie, what lovely pictures in Hello and OK magazine. You both look so glamourous and the babies are adorable. Chocs you look a bit frazzled in that last pic but well done for stepping up to the plate with these dear little quads. Once they are all crawling I expect they will be quite a handful. 🙂 x
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they always ask me if its comfortable use a blue cannula and run it thru slower xx

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Again Chocs thanks for the news about Helen, looking forward to hearing what happens today - well, if it's good news about her care I am.
Marie, you're asking for trouble!!
Janette, I had a horrible experience once with the dye as it felt like my vein was about to explode and it was so painful. Much to my embarrassment I cried and felt really silly. Luckily it hasn't happened since but it's given me a bit of a phobia about the scans.
Hope everyone can enjoy this lovely weather and have a good day
LD x
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Hello ladies, hope you are all enjoying the weather. Well done to you all for last night and the 'Helen ' problem , a real united front. Thank you Chocolates for keeping us updated. Good luck and best wishes to Helen and Bev and all having treatment and results this week. However , there is some good news...

 

 

Poldark Annouucement

 

I went into labour last night . it only lasted 20mins. Ross was there , he was wonderful. What a surprise it was quads. all weighing in at 10 pounds. It was like shelling peas. We have named them:Billy, Willy, Dilly and Silly.

 Mother and babies doing well. I am happy to say that Chocolates has agreed to foster them until they are 18. Thank you Chocs, so kind.
Well I'm back in my tightest corset , my hair is shiny and I have that twinkle in my eye. Ross and I are going to have a pasty and a pint  , then ride off into the sunset...

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Thank you chocolates as ever for your updates, I am so frustrated, and gobsmacked to be honest, with Helens (lack of) treatment. I know how vulnerable you feel when in hospital and all you want to do is get home, as well as feel better of course. The basics really seemed to have been missed completely with her care such as blood tests etc. and the fact that geordiex knows the hospital and hasn't had a problem seems at such odds with both of Helens recent stays as an inpatient. I do hope someone with oncology expertise sees her today and that she starts to feel better - but it's been a week now, unbelievable! Whatever does get done I really hope that she or her OH have the strength to make a complaint as I think it's needed. Please pass on my wishes for a speedy recovery.
Janette, hope you won't be too anxious for your results, difficult to worry I know but keep busy and try not to think about them too much. Glad that the vein was easy to find, I still have my one good one used for the contrast as my port can't be used, but keep an eye on any problems with the site as you had some pain with the dye. I haven't had this problem myself so can't advise but worth mentioning another time. As to the questions being asked by the nurse I had similar one time when I was asked why I had 'palliative' care written on my form! Well, if I wasn't such an old hand at the secondaries malarkey I would have been completely thrown by this. Instead I gave the nurse a full explanation about secondary BC and it's non curable status - even if she hadn't asked for it, grrrrr.
Thinking of you Bev as well, hoping your week is going as well as can be expected with the number of hospital visits and planning you have probably had. Hope the rads start soon and you don't get too many SEs
Hi to everyone who I've not mentioned, hoping that the sunny weather is helping and that all treatments are working well with minimum SEs.
Nicky x

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So glad you have heard from Helen Chocs. Let's hope things are happening today if not we are nearly into the weekend again. The pals leaflet left out may help too. Hoping Helen gets her iPad sorted so we can all "visit" and have a chat here. But really hoping she is home soon. X
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I think its unfair to say she has a rubbish onc he only came back from holidays yesterday he is the same as mine and shes only just changed over, her other onc at a different hospital was a waste of space ,but you really have to shout loud at the first sign of worry as I know x

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Morning ladies, heard from Helen this morning. They have promised that an onc will come and see her today. Oh did go and complain to nurse but she said she had been ringing her onc all day without success. They also had the pals leaflet out on her table and the nurse did keep looking at it so fingers crossed they are getting the message. Have passed on all the info from Julie to Helen, so she is armed.
Ladies, thank you for yur support for Helen. As everyone who is a patient there says it is a lovely place and you get good treatment. Helen unfortunately seems to have drawn the short straw again and has a rubbish Onc. The registrar though seems on the ball so fingers crossed this person does visit today. I think if they don't I'll explode.
Juliemo, thank you so much for offering to go in and see her. I wish I was closer but knowing someone can go and be with her is a real relief. Belinda, thank you for finding juliemo on the forum so I could contact. Fingers crossed for today ladies.
Hello everyone else, thinking of everyone getting tests/results/treatments this week. Hope we all have calm restful days xxxx
Hxxx
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Oh my dear!!!! What can i say that you other ladies havent, poor Helen i cannot believe the way she is being treated its a disgrace.
Julie thanks to your info maybe they can get something sorted today.
HUGE hugs going out to Helen x x x x x x x x x
Hope everyone is ok love Janette x x
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Agreeing with JulieD, juliemo3 thank you! Let's hope things, that should have happened now do, asap. To be forgotten at meal times, not seen, well I don't think I would have stayed as strong as Helen has. Sending her love, best wishes, strength through here. X
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Just catching up on posts. Give a huge hug to Helen from me too. x Janet x
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Julie you are a star! Glad you know some useful info/contacts now we need to get Helen or her family to use them and get things sorted xx

 

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Hi. Chocolates I got your pm but having trouble replying so posting here.
thank you so much for letting me know about Helen, not been looking at site recently so was not aware she was in hospital. Texted her last week and all fine?
its my treatment day next Wednesday, but I can go up on Friday to see her, I will text her tomorrow.
Her Onc is a xxxx! Makes me so cross, because they are lovely at the Freeman really.
The person she needs to talk to is Karen. she was SBC nurse, wife of my onc,but now runs Maggies centre and only SBC for BUPA ( in theory anyway, never lets it stop her) she is the one who sorted Cap in September for Helen.
Rachel, her sister, was going to take her over to see her last time Helen was in. But Helen resists.
Nag her 😀

hope all well with you and everone else on the site
julie xx
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Chocolates, thanks for letting us know about Helen even though it isn't easy to read what's happening with her care or lack of it. Hopefully her sister or OH will insist that something is done or, if something is being done, relay the information to Helen as nothing will change if someone doesn't fight her corner. It's so hard to accept the way Helen's treatment is so different to Geordie's. Hopefully she can get her iPad brought in to her so she won't feel so isolated and alone. Hoping she has a better night
LD x
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Ladies, Helen was anaemic the same time as me. It causes breathlessness and can cause the blood pressure to rise or drop. Did she ever have a transfusion? I don't think she did. X
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I think Helen has an iPad. I know, like me she was unable to use chat when it was an issue. Little things but an iPad would keep her in touch, help her feel less isolated. X
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Julie D - I've just pm'd you xxx
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Georgie, I'm sure the hospital does have wifi, I think it's just Helen doesn't have a device to access, I think that is what she meant. I'm glad her onc is back - let's hope he gets updated about Helen quickly. I'm also glad that you have a very positive experience. Let's hope that now the holiday weekend is well and truly over that things get put in place quickly for her. I must say, maybe things are being done, if so they are not communicating this to Helen which is in turn causing all the stress and worry on top of the pain and temp up, low blood pressure and breathlessness. It must improve soon xx
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Well done belinda! I thought it was a Julie, lets hope she sees the recent drama and can enlighten us advise Helen or maybe even be able to visit again (not trying to put any pressure on you julie if you are reading this as we know things aren't always possible)

 

Helen, completely agree. Nothing we can do unless wanted by Helen, but definetely sending love support and strength to dear Helen xx

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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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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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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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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 🙂

 

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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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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