Melt-down day

Public Archive
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Thanks in advance to you wonderful ladies with problems of your own who find the time to support people like me.I hope I have reciprocated in the past (but have changed my username now, due to nastiness even on a site like this one)

Spinning too many plates at the mo, most of them crashing. Primary BC 2009, did the works (chemo,mast,rads), went back to work for a year, diagnosed with extensive bone mets in June 2011 after months of to-ing and fro-ing to Oncologist with pain and symptoms. Told bone scan ok Nov 2010, told CT of lungs and liver ok (but was unreported) June 2011 - sent away to get on with life, skip skip… called back within the week when Onc did a big slump then sorry sorry - extensive bone mets. Huh? My head is screwed. I cannot believe it. Lost confidence in scans/tests/Onc. Prognosis - “years” or “months”. Living in fear of “an event” (spinal fracture? I feel so vulnerable now)

So - plates spinning are : application for ill health retirement (am a nurse, can’t cope): funeral arrangements!: getting house in order ie paperwork;seeing people/friends who didn’t give a t**s when I had bc first time ( the usual, you’ll be fine etc); memory boxes for kids, knitting bonnets etc (grown up, wont meet the grandkids). Dealing with assumptions - world cruise (no) run marathons (no) - I want to spend time with those I love.

Angry ++++ at Oncologist who, I believe, missed signs of 2nds on bone scan six months before yet says it would not have made any difference now.I don’t believe her.

I got cancer, I did my treatment, I got back to work and was getting on with my life … then the big hand came and plucked me back to the cancer-belt again. I don’t like it. I can’t see a way off this time. Its all a mind-set I know, don’t give in, think friggin positive blah blah.

This isn’t a big “poor me” oh no,I read all your posts girls and admire you for geting on with your roll of the dice. Tis hard tho eh? Got onto the live chat late tonight - then it “discontinued”. The MacMillan line today was too busy to get someone to speak to me due to bank holidays. I understand - too many of us with blo**y cancer. Now where is that crisis line, cos I need it!

Sorry guys, bad, bad day - know you’ve all had them.I wish all of you happiness and strength to deal with this sh***

xxx

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Hi Honey…
You are having a tough time. I am sending you the biggest hugg as I know you could use it. I know this is a cliche but stay strong and focussed…enjoy every minute, that’s what I try to do every single day. I feel you are just so overwhelmed that you just don’t know which way to turn. Sending lots of love your way. xxxxx

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Hi Happyfeet

I’m sorry to hear that you are having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.

In the meantime maybe you would like to talk to a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00pm and Saturday 9.00 to 2.00pm.

Best wishes Sam, BCC Facilitator

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Oh Happyfeat , xxx , sending you a scottish cuddle !!!
I agree with you , its s*** and you go on and be angry .You have every bl**** right to be .
I don’t know what to say to you that will really help , don’t want to be patronising by saying the wrong thing so i am really just bumping hoping that someone wise will come along with the right words that will help you.
But i am a good listener so rant away , it will help get it out.

Thinking of you , take care

Lorna :slight_smile:

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Happy Feet - I have sent you a PM!

Take care xx

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Thanks for rsponding guys, I appreciate all of your comments. Off to bed now, hoping tomorrow will be better x

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Oh Happyfeet, you’ve every right to be angry at this b****y disease. To be told that after u believe things are going ok must have been so devastating for u. U do seem overwhelmed by it all & it must be so hard for u to deal with. I don’t know what to say but am sending u big (((hugs)). Keep letting off steam on here, we’ll all be here to listen, take care xx

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Hi happyfeet,

So sorry to read your experience. Scared by the diagnosis, but especially angry at the initial misdiagnosis.

I’ve got dragged back into the reality “I have secondary cancer” a few times when I was trying to get on with my “normal” life. And yes, sometimes it just seems that when we need help the most, NOBODY is around!!! You did the right thing in coming back to the forum (after the nastiness you’ve unfortunately experienced). It always helps just to write your feelings down and get it out of your system.

Hope you have a good sleep tonight and wake up to a better day tomorrow. xxx

Sending you a hug. xxx

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Hi Happyfeet
No wonder you needed to let off steam! It all sounds very badly managed to say the least and no wonder you are planning all those things. However do have a look at the bone mets thread, where you will find all of us bone mets ladies. From what I can tell you have been dx with extensive bone mets but no other organ involvement? If so there ARE many treatments available and although you didn’t ever expect to be back here with BC let alone secondary BC it is the right place to find information and support. It sounds like you had a bad time on here first time around so I really hope that you can find all the supportive people on here who can help you. I have now had bone mets for 3 and a half years and went throughout exactly the same feelings that you’ve listed. However after an initial treatment with chemo I now have a pretty ‘normal’ life, most days I forget I’ve even got mets. There are also many ladies on here who were diagnosed with extensive bone mets either from the beginning or at their secondary dx and are still going strong after many years, mostly with fairly non-intrusive treatment. I hope you can get some support also from other places if you need to like MacMillan and also look at a second opinion if you have lost faith in your team?
Good luck and hope the dark days get fewer and you get a treatment plan in place.
Nicky x

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Oh Happyfeet, you’ve had one heck of a time with the misdiagnosis. However, as already said by others, bone mets (even widespread ones) can often be controlled for many years - mine were very well managed for five years, I carried on working as a midwife, travelled lots and had a wonderful normal life. I’ve only just been diagnosed with liver and meningeal mets so things have changed now - but I only retire from the NHS today.

I agree with Nicky that a second opinion is a good idea, I got one from the Royal Marsden as I lost faith in my oncologist temporarily - and they thought his management was fabulous. Feel free to pm me if you need to, about retirement or anything. Sending you virtual hugs x

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BIG BIG BIG HUGS ((((((((((((((((((((HAPPY FEET))))))))))))))))))))try and keep positive. xxx

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Thanks again for your supportive comments. Am so sorry to read of those who have had further progression - that is the scary bit, along with the seemingly inevitable treatments and other interventions (ops.) I had my blood test yesterday for tumour markers - 3 months now since changing from Arimidex to Aromasin so will see if its having any effect - the way I feel physically, I suspect not. Have appts next week with counsellor, manager at work re ill health retirement then surgeon and Oncologist on Thursday.I will then decide on whether to find a second opinion or not. Seem to be shifting a lot of paperwork around getting nowhere with it - and I used to be so organised. I am doing datf things too (good job I’m not at work) worry that it’s brain mets not stress. Oh dear. Anyway, some good news - my son got engaged last w/e so we are off to see him and celebrate on Saturday - he’s had health problems of his own (cancer) but seems to have come through his troubles (fingers tightly crossed). Best wishes everyone - I wish none of us was having to cope with this but hearing how others do so gives me strength to face up to it. x

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Morning all! Have appt with Oncologist this afternoon to find out results of blood tests - tumour markers etc, then will have some idea if my bone mets are being held back, or if not, what’s the next step. Am terrified. Would like to have some grasp of the reins, I hate feeling so out of control of my life.

Saw my manager yesterday (I am a nurse). I was furious to find he has told the locum nurse all about me including my application for ill-health retirement. Now, I know they will need to fill my post at some point but this nurse has wanted my job since I was diagnosed in 2009 and has already asked if she can have it now! Talk about the vultures circling!

Best wishes to all on here especially those having tough times, ops etc. Must join you on the Bone mets thread at some point. Will let you know what news I get today.

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First of all, good luck for the appointment. Hopefully you’ll have some good news and a plan which will put you a little back in control of your life.

Secondly, as I’m sure you’re already aware, your manager has broken confidentiality!!! I’d be furious about this! I’d also report it and drop her in it but only you know how you feel about it.

Hope you’ll let us know how the appointment goes.

Tina

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Thanks Tina - hope you are able to enjoy your retirement from the dear ol’ NHS. I know I need to leave now but it is quite something coming to terms with it. Might pm you at some stage.

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Hi Happyfeet, just seen this thread and wanted to give you a big hug and say you articulated so well the similar feelings of shock,anger,panic and fear and being out of control that I too felt in Feb 08 when I was diagnosed with lung and collarbone secondaries.
I have now been stable and scans showing no evidence of disease since Nov 08 and my latest clear results were last night. Although every day brings its challenges and side effects on the Arimidex and Zoladex I have learned (it took time!)to live for the moment and have lots of short-term goals and nice things to do all the time. I never dreamed back then that I would ever feel happy or in control again or that I’d be coming up to 3 years of stability with the disease. I just wanted to share that with you and hope the same for you. I began making funeral plans,etc. but left them as present life got in the way and I just enjoy making the most of whatever time I have.Writing down your feelings is very therapeutic and I thought your writing was so well put.Being out of control is the worst feeling and time does help.
Keep posting. Thinking of you with your appointment today. I found it helpful not to deal with too many issues at once - and just in small bite-size chunks and to take time to come to terms with things gradually.
Big hugs,
Anne xx

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Ooohh, it was bad news. Tumour markers doubled, Aromasin not working so advised to stop. What what WHAT now then??? … Nothing. Chemo on standby if required to alleviate symptoms/pain. Tests/ monitoring/follow-up… well, can do “as and when” required. I feel well and truly written off. OMG - what do I tell my children (grown ups but …) Thats it then. Bugger.

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Hi Happyfeet,
we haven’t been in touch before but I’ve read lots of your posts. just read this and wanted to say I’m sorry you haven’t had good news and am thinking of you. Cant imagine how you must be feeling right now. I really hope your medical team offer you treatment works for you and that like AnneS you have stability at some point soon.
Jeez I really hope I haven’t said anything inappropriate or thoughtless - I’m so conscious of assuming I know what others are feeling when our experiences can be so different.

Thinking of you and sending you a big hug.
Cannoliwings X

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I have posted on bone mets…Julie

share.breastcancercare.org.uk/forum/viewtopic.php?f=10&t=27192&p=580987#p580987

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Sorry guys - haven’t slept a wink, am so shattered. Is this how it goes then? I feel written off,no further treatment except chemo for pain relief should I need it (I don’t at the mo in fact as so many people keep telling me - “you look so well”) I was full of hope reading about others with bone mets and even secondaries elsewhere still receiving treatment and having a half-decent life. The Oncologist said the likelihood of me surviving for more than a year had “probably changed somewhat”. I asked her that question as I’m trying to sort out pension + other benefits which have “special rules”

Oh dear - thank you to all those who have listened and responded.

x