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Personal update

35 REPLIES 35
bikinggirl
Member

Re: Personal update

Dear Jane,

I am so sorry to hear that you are in so much pain and having such a bad time.
It is scary how you can deteriate day by day I find the whole thing quiet frightening and no wonder your not feeling bright.

I hope one of your medical team can pull something out of the bag to at least make you feel more comfortable.

I have learnt alot from your story as although I have mets in bones and lungs all my trouble has been local and your experience has been a wealth of knowledge, even if I have come close to being a copy cat at times.

Thinking of you

Best wishes
Tess.XXXX

scottishlass
Member

Re: Personal update

Hello Jane, I have bone mets and at various times have been in agony with pain, pacing the floor, cannot lie down or sit down for long, crying with unbearable pain this disease can bring.It could go on for hours and hours and Oramorph was not helping either. However I was referred to a pain specialist ( Consultant) at the WGH here in Edinburgh. I was also put back on a chemo regime that had helped in the past. My point is....The pain specialist came up with a whole lot of new things to try....Gabbapentin for nerve pain...I was on it already but I am now on a much lower dose and taking 4 times the amount (gradually) over a 3 week period. Also put me on slow release diclophenac ( I had been on the regular one for 10years!) also gave me patches to wear at the base of my spine and a TENS machine. I tried all , except for Tens machine and am even off the patches now. I don't know if any of this helps YOU. But if you could be referred to a pain speciallist perhaps they could come up with something that helps you. I am NOLONGER suffering from this really painful pain I was earlier this year. SEnd me a PM if it will help. My heart goes out to you, love Val (Scottishlass)

ChristineMH
Member

Re: Personal update

Hi Jane,
I have been thinking about you a great deal. Sorry to hear that things have been so tough for you.
Best wishes,

Christine

manon
Member

Re: Personal update

Hi Jane

I don't post regularly but from time to time I check up on old friends. I am so sorry to hear that you are having such a tough time. There is not much I can say and I know you are averse to platitudes but just to say that I shall be thnking of you and wishing you well.
all the best

Barbara

taffy
Member

Re: Personal update

have followed your posts Jane and just wanted to add my hopes that your pain is now better controlled and send you a hug.

ariadne
Member

Re: Personal update

Thank you Jane for all of your postings. Just to add my thoughts and support to all the others, you 'tell it like it is' and I infinitely prefer to hear the reality rather than the platitudes that I get fed continually about what may lie ahead.
Ariadne

Wizzbaby
Member

Re: Personal update

Hi Jane

I'm so sorry to hear that you are experiencing pain and having such a tough time.

Thank you for your insights into many aspects of BC, your knowledge and clear way of writing has been useful. Also your viewpoint that we, as patients, can understand increasing amounts of medical facts/jargon and not just the very basic bits of information. I can't say I've always agreed 100%, but I have appreciated your clarity.

with love Wizz

belinda
Member

Re: Personal update

Hi Bertie B..thanks for your posting..glad to hear this.

Lenny
Member

Re: Personal update

hi jane,

i don't think i have posted to you before but i do follow some of your threads and i want to thank you for using your gift of knowledge to inform me and others. also for making me see things from a different perspective, i know that i am the better for having read your thoughts on here and on your website.
this disease is just not fare and it is not the way things are supposed to be. i know where you stand regarding faith and i really respect your position. i however do have a faith and i hope you will allow me to pray for you and for pain relief - it is all i have to give and the best way i know of supporting you,

here's hoping there is good news around the corner,

with love,

lenny
xxxx

ripley
Member

Re: Personal update

Hi Jane

I'm really sorry that you are experiencing so much pain and that the medics are not able to get a handle on it. It must make typing really difficult with your arm being affected, so thank you so much for keeping us updated.

I'm delighted that BCC have approached you regarding your story and I really look forward to reading your candid account.

xxx

debsincornwall
Member

Re: Personal update

Thanks Bertie, now it is over to you Jane hope you are feeling well enough and look forward to reading your story.
Love Debsxxx

Bertie_BCC
Member

Re: Personal update

Hi,

Breast Cancer Care's work is based on user feedback. Personal stories are important to us which is why our online community is at the centre of our website. When we're approached for a personal story we always reply. We do so by email or private message.

Jane is one of the most (if not THE most) active members of Breast Cancer Care community, I don't know why some of you assumed we would ignore her offer to tell her story. Of course we contacted her and I hope we can relate her story here soon.

Thanks,

Bertie
Head of New Media

Dahlia
Member

Re: Personal update

Jane

I'm afraid that BCC appear to "ignore" the hard stuff.

jaynemh
Member

Re: Personal update

Oh Jane - so sorry to har you are stuggling at the moment - you are in my thoughts and sending you much love ....and thoughts for pain relief and some respite from this shi**y disease...Jayne x

only1chris
Member

Re: Personal update

Dear jane,
read many of your posts on many threads. You are a wise and generous spirited woman. i wish i could help you in any way - as you have helped so many of us. My thoughts and prayers will be with you and i so hope that they will find a route to mitigate your pain and give you peace and rest.Much love

LesleyLP
Member

Re: Personal update

Hi Jane, really hope that your pain can be got under control very, very soon - also echo what Debs says re BCC not listening, not impressed I'm afraid.

Lesley x

josyemarie
Member

Re: Personal update

.....and me too Jane. You are very much in my thoughts. I hope they find something soon that will work on your pain.
Josie x

belinda
Member

Re: Personal update

''Why don't BCC focus on the plight of the terminal ill, they read our post but go so quiet''...debs yes so true..I'm so fed up with it..well said..x.x.x

Jane
Member

Re: Personal update

Jane

Thinking of you and sending lots of love.

Jane x

Marilynleah
Member

Re: Personal update

I do hope they manage to pull their finger out and sort out the pain issue.

I also hope that you will be writing here for quite a bit longer. I have to thank you and the other ladies with secondaries who post on here, and on the other site, for telling it how it is. I for one need to know because if, or when, my time comes to develop secondaries I know that some of the info I am given will not necessarily be accurate.

So thankyou for your frank comments and amy you do so for quite a painfree while longer

Marilyn x

debsincornwall
Member

Re: Personal update

Sending you love and really hope somehow someone can sort out the pain.
I share your frustrations I am not in pain but have no energy can still only get from bed to bath to sofa.
Why don't BCC focus on the plight of the terminal ill, they read our post but go so quiet.
Thinking of you.
Love Debsxxx

Bahons2
Member

Re: Personal update

Jane

Thank you for posting (not only on here, but on other threads as well), when you are in so pain and discomfort.

Many of your posts are deliciously well-written and 'breastcancerworld', as you put it, desperately needs input of this calibre and honesty.

I too am hoping that a lid gets put on your pain and that you are able to continue posting on here for as long as possible.

X

S

redders
Member

Re: Personal update

Just wanted to echo all the previous comments. You always "tell it like it is" and many of us have gained from your knowledge and insight.Thank you. Thinking of you and wishing you some relief.

DilysP
Member

Re: Personal update

Dear Jane

I was so sorry to read your post. I hope that some pain relief can be found for you. And like many others on here I thank you for your posts, and for telling the truth. You are an amazing lady.

Wishing you strength, and sending you love

Dilys

TORONTO
Member

Re: Personal update

Oh Jane,
I am so, so, sorry you are going through this....I was(in my former life!) always led to believe no one ever needed to suffer pain.. I was under the impression that there was enough various medications out there to control it.
I do hope they can sort you out very soon,
We need you Jane, you are such a help to so many of us!
Take care,
Janx

Kindensurprise
Member

Re: Personal update

Part of you living well during the progression of this awful disease is the support comfort and knowledge that you have been kind enough to pass on on this site.Thank you.
Wishing you effective pain relief
Kinden
x

Blackheath
Member

Re: Personal update

Dear Jane
So sorry you're in pain - hideous for you. Do hope the palliative people can help. Hope you're able to get some sleep
Best wishes

Marilf
Member

Re: Personal update

And that BCC confirms that it understands that you (and all of us who post here) are its best and most coherent, timely and accurate informants about what it's like to live with the varying aspects of incurable and terminal breast cancer.
M x

Marilf
Member

Re: Personal update

Jane, I'm so sorry that these latest drugs have let you down again, and hope the hospice & co. can come up with a better combination to give you some relief now. Thinking of you.
Marilyn xx

Anthi
Member

Re: Personal update

Jane - so sorry to hear about this. I do hope they can find some pain relief which works for you. I'm thinking of you.
Anthi

horace
Member

Re: Personal update

Just to tell you that I am thınkıng of you and hopıng for effectıve paın relıef at least.
Valx

redcell
Member

Re: Personal update

just wanted you to know i always read your posts and i have learned alot from you, thankyou. i'm so sorry that this disease is so cruel and that you are in pain. i hope some effective pain relief can be sorted out for you.

belinda
Member

Re: Personal update

Jane..I'm sorry it is all so bl**dy awful.
I hope BCC read your message..xx

maltomlin
Member

Re: Personal update

Dear Jane

I'm so sorry that you're in this position and hope that they can 'sort out' your pain relief. You're right that BC sucks and there's no glossing over that fact.

Keep posting.

Mal x

daisyleaf
Member

Re: Personal update

Jane
just wanted to wish you well, I've been reading your postings in retrospect as am new to this forum and have learned from them. I know this is palliative treatment and that you aren't able to hope for the kind of time that a lot us of can, but I do hope, sincerely, that the time you have left is comfortable and as happy as it can be.
It would be good if bcc used your case as an example, there are realities that need to be faced, and aren't.
I'll be thinking of you, be kind to yourself
monica xxx

JaneRA
Member

Personal update

I think caeylx is probably failing as I am, day by day, getting more skin mets, and several large lumps in my neck and chest wall. My skin is weeping below layers of crusty red skin.

I also continue to be in pain...pain which at times I find unbeable..10 on that 0-10 slide. The pain starts at the top of my arm and then burns its way across my shoulder and down my arm again. Have tried more combinations of painkillers than I can remember. My left arm is unable to move so dressing unaided is a problem.

Have seen various medics today...GP, District nurse etc..the've spoken to oncologist and pain consultant.

As far as treatment options are concerned there really isn't anything except palliative care.(I an not in the business of running after PARP trials or similar) so I resume my position of just trying to live as well as I can for as long as I can.

I would love BCC to use my story as a case study of what can happen to women with incurable recurrences..but perhaps its too miserable for you??? I can't, right now, feel bright and hopeful about anything, let alone writing a truthful account

Jane