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Bone mets - please join in

Community Champion

Re: Bone mets - please join in

Helen I am so very sad to read of your latest results. Lots of advice on here from 'the girls' but I guess it will be a while before you feel strong enough to register any formal complaint but right now I think you need to find the sort of support that will take you forward in getting the care you need. Not sure where it will come from but of course macmillan are excellent and of course as many have already said, a call to the helpline here. Sending hugs to one lovely caring lady ((((((((((((((((-))))))))))))))

 

Dawn

xx

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Re: Bone mets - please join in

Hello Helen, so sorry to hear your news, I have been to the virtual  chapel in the dark wood and lit a candle for you and all the sources of inspiration on this thread http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=DDW

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Re: Bone mets - please join in

Morning Helen. I jusr wanted to join the other ladies and say how sorry I am to hear your news and send you a hug and lots of love. I don't have bone mets, but read this thread to benefit from the information you share and support you show to each other. I find it very inspirational and I know everyone will be holding your hand through this.
I absolutely agree that if you feel you want to contact them PALS would be a good starting point to address your concerns around your care. It is unacceptable that you were given your scan results over the phone from the BCN and with no immediate follow up appt with oncologist. I hope this can be rectified.
Poor care aside you will be given a treatment plan and there are effective treatments and new ones being discovered all of the time. So please try to draw strength from this and don't give up hope.
I will be thinking of you a d your family. Take care . Steph xxxxx
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Morning Helen, hope you have managed to get some rest, just want to say when you are feeling a little stronger the other ladies are right PALS are fantastic, we had probs with my late mother in law 2yrs ago and went to them they got things sorted in no time.
please stay strong you are a very special lady to all of us!!! Love an HUGE hugs Janette x x
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Re: Bone mets - please join in

Oh Helen I am so sorry for your news. Just logged on now and read it all. You must list all of your treatments - or lack of - and take this further. You probably won't feel up to it but maybe your husband can help you. Send a copy to PALS and also a copy to the chief executive of both hospitals. The one where you receive treatment and the one where the ONC comes from. Send them so that they have to be signed for and if you have no reply in 7 days write again....... Try to list everything with dates and names. Copy them to your MP and the Health Secretary. Make as much fuss as you can.

You probably won't feel much like doing this but keep strong. I wish I could think of something more to say. Sending you hugs and love...
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Helen thinking of you and your sister. Keep strong cann't say anything that's not already been said. VickyXXX

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Re: Bone mets - please join in

Helen, I couldn't believe it when I read your post. Please stay positive and try as others have said to speak to someone tomorrow who may be able to get you an appointment with another onc in the very near future.

Did you get results of your last mammogram as to whether this was Her2 pos. I wondered if it was possible that these secondaries are from that breast because you did have a long time to wait for them to do something. 

I think it is time for me to send YOU a huge hug Helen. Love Sheila. Xxx

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Re: Bone mets - please join in

Dear Helen
Sorry that I've just posted as we've been away for the week and I've just logged on to view the posts. I'm so sorry to hear of your news regarding your sister and the progression of your secondaries, I'm sending you a very big cyber hug and my thoughts are with you. You have been an inspiration and such good support to me and everyone on this forum, you don't know how much you helped me when I was first given my double whammy diagnosis the end of last year. Wishing you all the best and kick *** !!!!!!
Love Julie
Xxx
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Re: Bone mets - please join in

Oh Helen I'm so so very sorry to read this. Don't know what to say....I could weep for you...

Much love to you ..... They better get u on something good soon!!! B.......s!
Xxxx
Community Champion

Re: Bone mets - please join in

My dear Helen what a truly horrid time you are having. I do agree with the others that you, or someone on your behalf if you cannot face it at the moment, should list all the problems you've had with this hospital and put in a formal complaint.
More importantly at the moment though is to allow yourself the time and space to let this latest news sink in. You may feel in a couple of days time that you'd like to talk things through,the helpline is a good start. Is there a MacMillan team anywhere near you, maybe they could help put pressure on re appointments, it seems bad that there would be no alternative oncology specialist whilst your Onc is away.
Please do come and have a jolly good moan, scream shout whatever, we can't do much but we can be your sounding board and we will collectively be holding you tight.xx
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Re: Bone mets - please join in

There is nothing I can say to make you feel better Helen it's just so horrid and I wish I could take it all away. Big hugs and sending you strength. As we always say you will feel better when you know your action/treatment plan and I really hope you don't have to wait for your onc to come back from his holidays before you find out. Biggest biggest hugs xxxxx
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Re: Bone mets - please join in

Hi 2catlady

 

I'm sorry to hear of your latest diagnosis and would like to reiterate what has been said, that please do give our helpline team a ring, they're here to support you through this.

 

Take care,

Jo, Moderator

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Re: Bone mets - please join in

Helen I am so so sorry to hear your news.

Your treating team must have other Doctors working in it. surely oneof them can see you and talk through results and possible options....that would give you a chance to think about what you want to do and have your thoughts straighter for any discussion with the onc.......

think very carefully before moving your care to a more distant hospital..........discuss and think about the teams links with other services such as palliative care.....but if as it seems you have lost faith in your team maybe this would be the best option.

Sending you hugs....best wishes Pamx

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Re: Bone mets - please join in

Hi Helen

I am so sorry to hear firstly about your sister being diagnosed with primary BC and then the news of your spread.  Life must be pretty tough for you and your sister right now but I'm sure you will find support with each other.  As all the other lovely ladies on here have said we are with you all the way and will be supporting you whenever you need it. I hope you can speak to someone regarding your treatment plan and don't have to wait two weeks for your oncologist to get back.  Although it puts more pressure on you, you may have to shout at someone at the hospital to sort this out.  

I would also contact the hospital PALS department, who are meant to be on the patients' side, to lodge a formal complaint but, again, this is something extra I'm sure you don't need to be doing right now.  As Belinda has said (and we've been on the forum about the same length of time) yours is the worst case I've read about regarding lack of care so I do think it would be justified.

However, for now concentrate on you and look after yourself.  Sending hugs and any support I can offer.

Nicky xx

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Re: Bone mets - please join in

Helen - I am so sorry to learn your devastating news. I cant express the words that I would like to about your oncologist. But please once you have had time to digest your shock ask for a 2nd opinion / change of hospital. You have supported so many people on this forum - now its our turn to support you so please rant, rave at us - we are all here for you. There are still lots of treatments available to you so dont give up hope. Stay strong, massive cyber hug xx

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Re: Bone mets - please join in

Helen have you rung the BCC helpline before? Please, please consider it, your care has been so incredibly bad and it doesn't sound as though it's improving anytime soon. I know how hard it was for you to even get these scans. Yours is the worst patient care I have ever read of here. What a shock for you, take care lovely. X
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Sorry to hear Helen - these onc always seem to be on holiday! !!
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Oh no Helen...as if you havent been through enough love! I'm here holding your hand and giving you a huge squishy hug.
Stay strong..shout and rant and let it all out. We're here for you and your sister.
Lots of love. ...bev xxxxx
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Re: Bone mets - please join in

Helen, I'm so sorry. I hate this disease. What a shock again for you. This is so cruel and your onc away. Just typical. Surely they can still book you an appt for as soon as he is back so you at least have a date. You need to get over the shock of all this and then in a couple of days think about who you want to see for treatment. You might decide that now is the best time to change oncs. But for the moment, shout, scream, cry, rant - just not fair. Let the tears flow over all the news you've had to deal with recently. We're all here for you and willing to listen.

Take care and huge hugs,
Hxxx
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Re: Bone mets - please join in

Oh Helen, I'm so sorry this has happened to you; bloody disease. 

 

I'm feeling awful for you and just wish there was something I could do other than send love and a massive hug.

 

Take strength from those on here - we're with you all the way.

 

In my thoughts - love Tink x

 

 

 

 

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Re: Bone mets - please join in

Helen, I am speechless what a cruel disease this is. Have a rant, cry whatever you need to do, let it out though don't bottle it up. Sending you huge hugs wish I could do more Sara xxxxxx
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Re: Bone mets - please join in

Oh Helen i am so so sorry, i wish i could give you a big hug, feel so helpless and don't know what to say!! Sending you a massive cyber hug, stay strong your such a positive person you can fight this bugger. Arrgg im so angry life is just so unfair sometimes.
Take care love Janette x x x x x
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Hi,ladies,just found out its spread to liver and lungs,totally devastated Smiley Sad Smiley Sad and you guessed it my onc on holiday for two weeks.
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Re: Bone mets - please join in

Hi Helen...really sorry to hear about your sister....I guess in some ways your experiences have already helped her in dealing with it by giving her the fortitude to chaseconcerns at a different hossie.....cold comfort for you however and your own anxieties with regards to the treatment you have received. Im so sorry you are again waiting for a phone call with results....it really is stressful and seems a strange way to treat someone who has been through what you have been through. Im hoping the news will be very good. best wishes Pamx

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Re: Bone mets - please join in

Helen I did reply yesterday but post doesn't appear!

Anyway just wanted to add my love and support. No wonder you are churned up and tearful. You've been through a lot and we might joke about Fawlty Towers but it's stressful for you add the emotional shock of your sisters dx and you've had too much to try to deal with.

Is the hospital your sister is under now within travelling distance for you? Sounds like they are more on the ball.

I'm the eldest of four girls and since my dx two of my sisters have also had bc, I think I felt worse at their dx than mine! They both seem to be doing well. So you see I understand where you are coming from and how upsetting it is. You will be a great support to your sister but try to remember to be kind to yourself too. xx


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Re: Bone mets - please join in

(((((Helen)))))

Words fail me. You don't deserve this. Remember we are here holding your hand. I'm so cross and angry about the way you and your family have been treated. The effort and energy involved in sorting all this out is something you shouldn't have to engage in. Please look after yourself. The shock is dreadful - you must look after yourself. Let us know when you can if you hear any results. We're here for you.

Lots of huge hugs

Hxxxx
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Re: Bone mets - please join in

Helen, what a terrible time you are having, I am so sorry to hear about your sister and you having to deal with a seemingly incompetent, insensitive hospital. You are always such a positive person and help so many other ladies here with your kind words. Waiting for results is always difficult, made even more so for you with your BCN, try not to be too upset, here's hoping the results are good for you. And I echo what others have said I would try to transfer to another hospital, it's within your rights to do so.
Thinking of you, Smartie x
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Re: Bone mets - please join in

Morning Helen, hope you managed to get some sleep last night and are feeling a little better today, fingers an toes crossed for your results today :-) hope your sister is ok after her bad news, theres one thing thats for sure is she has a massive support with you as a sister, your support on here to all us ladies is incredible your a very special lady!!
Morning to all the other lovely ladies, hope everyone is fine
love an hugs Janette x x x
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Hi ladies,hubby,rang BCN she hasn't got results,or in other words hasn't even bothered to find out. My hospital is called Mistake lane by locals instead of rake lane I wonder why ???!!!!
Hoping BCN nurse rings later ,sitting all churned up inside and can't stop crying,totally deflated.Smiley Sad
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Morning Helen, What a dreadful hospital you have, so sorry to hear about your sister. Pleased your sister's partner is writing a letter of complaint this kind of thing should not happen. It is a shame this hospital can not be name and shamed, your GP doesn't sound much use either. I hope you get your results today and they are good. Lots of hugs Sara xxxxxx
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Oh Helen - I am so sorry to learn about your sisiter and the ongoing saga of your hospital. I will be thinking of you both and do hope that you are both feeling a little brighter today and that you get good news from your scan results later today.x

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Re: Bone mets - please join in

Morning Helen hope your feeling a bit brighter today although that's going to be hard at the moment. Hope your hubby gets some answers for you today and best wishes to your sister too. Much love Tracy xxxx
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Re: Bone mets - please join in

Hi,ladies,sorry I didn't answer last night,head wasn't in a good place. Thank you for your kind words. Yes,thank god they have found it early before it's spread. My sisters partner is writing a complaint about whoever looks at mammograms etc. I've mentioned to my GP I'm not happy with hospital but he just humours me! I'd still get same consultant if I moved to different health authority according to him!! As he comes from hospital I would move to! But I'll see him and ask again.
I've asked hubby to ring BCN today to ask for results (she was supposed to ring yesterday after scan) I don't even want to speak with her as soooo angry.
Thank you ladies,huge hugs,Helen xxxxxx
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I'm so sorry to hear about your sister Helen. Do you live in an area large enough to have yet another hospital for her to go to? NHS is also such a lottery concerning treatment. Our choice is local hospital just a 45 mile round trip or 150 mile round trip to the "big" hospital. We cann't even change our GP as we live in a rural area covered by just one surgery no one else is allowed to take us! The whole thing of what is available where is very unfair.

Back to the PIP when I phoned up I was asked about how far I could walk, both could I walk 50metres to which I replied at the moment but don't know what's going to happen then 20 metres withe same answer. I really do think it is a case of who you actually talk to on the day and if they are having a good day or not.

The job centre are just as bad. My brother in law has come to live with us and is having to claim but the attitude of some of the job centre staff is absolutely disgusting their don't care attitude and actually giving the totally wrong information which was when it boiled down to it a lie!

Another thing that stinks is with our council( I don't know if all councils have the same rules,) is adapted bathrooms. If you are rich enough to either build a new bathroom just needing grab handles for the bath and loo or have a large house with a second bathroom you can adapt you can actually drop a council tax band. If you have to adapt just the family bathroom because you are not well off for the other you cann't drop. Where is the fairness in that!!

Anyway moan over hope all you ladies out there get a good nights sleep (love one of those!) and a good day tomorrow.

 

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Re: Bone mets - please join in

Hi Helen. So sorry to hear of your sister's diagnosis. Please consider the advice from the others and move hospitals. It is so important that you are confident in those delivering your treatment. I wish you and your sister well, you are so supportive of others I hope that you can now gather support from all who are cheering you on. Take good care love Steph xxxxx
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Re: Bone mets - please join in

Oh helen..so sorry to hear this. You have to move on from that hospital NOW! Its shambolic. No one should have to put up with treatment (so called!) like that. You need to make a complaint to the Trust too. Please think seriously about changing.
Thinking of you and your sister and sending hugs.
Bev xxxxxxx
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I'm so very sorry to read this news Helen. Take care, both of you, xx
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Oh Helen, I'm crying here for your family. What a dreadful shock. I wish I could make it all better for you and your sister. That hospital should be named and shamed. I know I joked and called it fawlty towers, I'm so sorry now. They are a disgrace. Please, like the other ladies have said consider moving to another hospital. You deserve so much better. I'm sure the shock is beginning to set in now. Look after yourself now - take each day as it comes. Rant on here as often as you want. We are all here for you. Huge hugs xxxxx
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So sorry to hear about your sister Helen hopefully it's caught in time for her before any spread. I wrote a compliant today for my treatment with my drains maybe she could do so once she's able. Thank goodness you have each other.
Much love xxxx
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Hi Helen, i'm so sorry to hear about your sisters horrible news, my god it dosen't rain on you it pours!!! As for that hospital it needs bulldozing!! Sending you and your sister a BIG hug, Helen if i was you i would be seriously thinking about swapping hospitals!
love an hugs Janette x x
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Hi,Sheila ,thank you xxxx I
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Re: Bone mets - please join in

Helen, I am so sorry to hear about your sister. What a rubbish hospital!! I wish her well. I'm sure she will get much better treatment wherever she has gone. I also think that when you get your results whatever they are that you should go there too. Love Sheila. Xxx

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Hi,ladies,just found out my younger sister has BC today. She had mammogram at Fawlty towers a couple of weeks ago and they said it's all clear,she talked to my BCN who deals with BC in families who said she didn't need ultrasound as all clear( exactly the same happened to me! Six month later I had primary &SBC). My sister went to another hospital as didn't want preventative surgery at Fawlty towers (who can blame her!) and had scan there and has three cancerous lumps.I'm in total shock,god I hate that hospital,it's a complete farce . The BCN is totally useless ,I feel like screaming at her. It's like déjà vu.
Feeling very down Smiley Sad ,sorry ladies just needed someone to vent feelings to.
Huge hugs,Helen xxxx
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Chocolates and Janette....as I said I didn't fill in any of my claim as she did it from my records but just asked me for some extra details about my condition and I didnt actually see the ds1500 form. The Macmillan advisor got the Onc to fill that in after I'd left and she sent it all off together that day.
She said she couldnt see a problem with me getting it and the mobility part of it even though I'm very mobile now. Also that these tend to be processed quickly and I should hear in 2 or 3 weeks max and that it would be backdated to the day I made the telephone claim which was 10th july!
So fingers crossed you'll be the same !
Bev xxx
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Hi ladies, im not sure what the form was as the lady from welfare rights did it all, i know my Onc and Mcmillan nurse would not fill a form as they said i was a long way off terminal???so don't know if thats the form you mean?
Helen i hope your feeling better love.
love Janette x x
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Hi,Sheila,xxxif they are too long please don't type them all out xxxxx they will take you ages. Thank you for offering though.
Huge hugs,Helen xxxxxxx

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Helen, I will dig those poems out and send them in a private message to you if that is OK. I don't mind anyone on here seeing them but the forum is public isn't it and I feel better if they are kept relatively private. If I can't find a way to scan them I will have to type them so it might take a while! Ha ha xx

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Re: Bone mets - please join in

Hi Helen, hope you are still feeling a bit better. Have a rest day. It will do you good. All this backwards and forwards to hospital is tiring never mind anything else!

Chocolates, I'm glad you got your form sorted out. I didn't have to phone them up but rules change pretty quickly with benefits now don't they. Good luck.

Hope everyone else is OK. Xxx

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Re: Bone mets - please join in

Hi Helen, sorry to hear you've been unwell overnight. Hope you're having a duvet day - under your parasol with factor 50 on.

The dr signed my ds1500 - I actually feel ok about it. It is a bit bizarre but I've been through all that acceptance stuff already and know I'm going to live longer than 6 months I hope but I'm obviously entitled. It was a young dr who I think was a bit embarrassed - he didn't even know the form existed so you can imagine can't you. I believe I now need to ring up pip and just answer a few questions - I'll remember to answer about my worst days. Then we'll wait and see.

Weather on the turn here - gone cloudy and about to rain. Our lovely cat has just bought a bird in for us so the usual fuss has just happened - me screaming, kids screaming - cat running under bed with said bird and then us hatching plan of getting dead bird out of mouth and out of house. Never a dull moment here.

Take care everyone,

Huge hugs
Hxxx
Community Champion

Re: Bone mets - please join in

Hello lovely ladies!

Quite aq lot of activity on here over the past couple of days but good to see that on the whole things are improving or moving forward for lots of us.

Just a quick one for Janette. Did you have a DS1500 with your PIP application, if so, backlog or not, they should not keep you waiting that long,they should be prioritising your claim, so give them a ring or see if the welfare adviser will do it for you xx