Normality, I seem to have misplaced it....

Public Archive
1

Hi everyone.

For those that haven’t seen my posts in other threads, I have recently been told that what seemed like a nice ‘simple’ local recurrance where nodes where removed by surgery and a belt and braces chemo was planned, has progressed into ‘can’t fix me’ anymore. In a space of a week I went from a having a bottle of champers, to needing a bottle of valium!

I am just wondering how everyone copes with facing this. I almost feel like I am spinning along, as if it hasn’t happened, or as if it’s all going to be ok. Yeah I have done a lot of crying, a lot of questioning, a lot of talking with my loved ones about the future and what is does, and now doesn’t hold for me. I am 40, was only originally dx’d in March 07, so things seem to be moving so terrifyingly quickly.

I want more time.

How can I carry on being normal, living my life, planning for a future even if it is shorter term than I used to? I had my appraisal last week, my boss was very kind, said some nice things and then said that if, in a couple of years, someone came along and said I could go and do something else, with a promotion he would support me. I looked at him and barely held on to my tears, my career has been so important to me, I love my job, I am getting somewhere but it’s over now.

I am sorry for ranting. I just don’t know how to feel anything right now, except pretend it will all go away (even though I know it wont) or sit here and wallow in self pity crying (even though that is not who I am). I wrote elsewhere that I am coping, but it feels like a thin veneer at this moment in time. I am grateful for what my life has been. But now I am so scared it hurts.

Thanks for listening, I know there is nothing anyone can say or do to make this better but just being able to express this stuff helps.

Best wishes to you all
Nikki

2

Hi

I’m so sorry to hear your news, my heart goes out to you. What you say is exactly how I felt.

Jan 07, aged 43 had dx, mastectomy Feb a couple weeks later found out mets to bone. Had rads, no chemo and put on tamoxifin. A year later ovaries removed (as BRCA2) and bc found in them and also spotted in peretinium. Changed from Tamoxifin to Femera, still no chemo and doing and feeling well. Its taken along time, I still have occassional tears sometimes out the blue, sometimes its something said like recently a friend announced her daughters engagement, I wondered if id be here for my daughters. I’ve chose songs for my funeral from time to time, mind you its going to be along one the number of songs i’ve picked, but gradually have come to terms with it. Its no longer my first thought when i wake up or my last thought at night. I have alot to be hopeful for, my cancer is stable but I know this can change quite quickly but that will be faced when it happens and at present I try to enjoy life as much as I can while able. There is ladies on here who have coped with secondaries for years and I hang onto the hope I’m going to be one of them.

Can I ask where your secondaries are and do you know your treatment?

Take care and my thoughts are with you.

3

Hi Nikki,
I can understand and relate to everything you feel, you and others are far to young to have the fear of your life being cut short by this b@stard disease. I am older 57 but still feel the same I talk to older ladies in their 70’s who moan about an irregular heart beat, a twinge in the back lots of complaints normal complaints and I envy them. I so would love to have those extra years. Maybe I will, maybe you will, maybe others will but maybe we wont. Sadly we all visit the dark place, I really do try not to go too often. It’s is early days for you I wish I could help more more what I can say is 4 years ago we as a family had our last Christmas it was a sad stressful time, the next year we celebrated that we were able to share another one, in a couple of weeks we will share another one and I will be so grateful.
Hope you are able to find comfort from the forum sorry I dont have a magic wand.

Love Debsxxx

4

Hi, Nikki. I have read your posts in another thread. I can only sympathise and ask you to try and be strong. Look at what the other ladies are saying in your boat. In fact I’m pretty sure I’m setting sail on that one too. Every time I go back hoping for good news - which, like you, was practically promised to me - more bad news is doled out. I know all these surgeons, consultants and nurses are brilliant, but I do wish they wouldn’t give us false hope without knowing the facts … it’s so much more devastating when you already think you’ve beaten this bastard disease - when in actual fact you haven’t even started! Please take heart that you’re not alone on this rotten journey, you so, so aren’t. I know it seems the worst time at the moment, but you’ll soon find many, many brilliant days are on the horizon. Don’t let the dark ones creep in and ruin them for you and yours. Much love, Jackie. xxx

5

Hi Nikki,

I have read lots of your posts recently whilst you have been threading your way through the lump in your throat etc and I just wanted to say how sorry I am. Nothing I can say will help and, if you’re like me, sympathy just either makes me cry more or get annoyed because I want answers not platitudes but I just wanted to extend warm hugs and love to you. I have a good prognosis but still visit a dark place wondering whether I will be here 5, 10, 15 or whatever years from now and can’t imagine what it must be like to be standing at the edge of the black hole knowing perhaps far more than I wished I did.

I stupidly often wonder why I ever bothered going to the doctors as my lump and I were getting along fine, it wasn’t hurting me and I wasn’t hurting it (if you understand what I mean) and the chaos and upheaval in my life, the fact that life will never look the same, that has resulted from my diagnosis is sometimes more than I can stand. Ignorance was bliss.

My heart goes out to you at this truly dreadful time in your life, made worse no doubt by the relentless cheeriness of the season.

XXXXXXXXXXXXX ((((((((((((((((((((((((((((((0))))))))))))))))))))))) XXXXXXXXXXXXXXXXXXXXXXXXX

6

Hi Nikki,

It is quite understandable that you feel as you do and all I can say is, it will get better with time, although there are still days when I think like this - and I was diagnosed 3 1/2 years ago. It is frustrating not being able to plan for your future - I do find this a truly awful prospect, especially while I feel so well. This is the place to come and rant - any time you feel like it, as we all understand and relate to how you feel.

So sorry you have to join us here.

Jenny
x

7

Hi Nikki

The shock and sadness of an incurable diagnosis is horrible. I know that your own recurrence, like mine, is an incurable regional one, and I know how that too brings its own very uniques problems…cause all the literature tells you regional recurrance is curable and is’nt sceondaries, but here you are (and there I was) with very different information from your own medical team telling you that the recurrence would not be cured but could be treated. So in a new clubb but the club doesn’t have many members like yourself.

I don’t think feelings and responses to the shocking news go along in neat linear fashion. I haven’t found things get easier as I go along…its more a cyclical process where I visit and revisist anger, despair, denial, acceptance…all those words in the famouus ‘staged’ ttheory of loss. Uncertainty is the worse thing. Will this treatment work? What if it goes to my brain? What if I run out of treatment options? What if??? When exactly will I die??

I’m now at the stage where I don’t feel well…I’m so tired on chemotherapy, and the extensive tumours in my neck and chest are impinging on lots of different bits of my health…my ‘new normal’ changes all the time…and I hate feeling ill.

Yes over time I’ve found I’ve leraned some strategies for ‘coping’ and yes of course there are good days, of course I laugh and smile and also have feelings of fantasy invicibility that I haven’t really got cancer…but I have.

I won’t ever ‘come to terms with’ dying prematurely,…I carry my anger about this to the grave which seems to me to be a very healthy response to a cr** situation. As John Diamond said: ‘Cowards get cancer too.’

Jane

8

Hi Lynni, thank you for writing, as Jane has written I am in a similar position as she is in that I do not have ‘secondaries’ exactly, for now. I have an incurable local reccurance, which has progressed. I feel cheated that I had false hope, but it is what it is, I guess I just have to get on with it really. It is reassuring to know that these feelings are not unique to me, but others also have them. I am not alone, and that is immensely reassuring.I am lucky in that I do not have children, my heart goes out to you all that you have to face that part. I am hoping I am going to be around for some time yet of course. I just hope I get good response to some treatment, although my current 2 doses of carboplatin seem to have made no difference and I am sure it’s getting worse. I intend to talk with my BCN tomorrow when I get my bloods done.

Hi Debs, I know what you mean about people moaning, I have to smile when people have a good whinge about all sorts. I want to ask them if they would like to swap! But I hold my tonuge :slight_smile: My own Nan is 96 and basically doesn’t want to be here, she said she would more than happily swap the last 15 / 20 years she has had and give them to me. My Mum is distraught, I feel so badly for those I am going to leave behind, I want to make it better for them but I can’t. All I have to do is the dying part and my work here is done, they have to get on with thier lives afterwards. My Mum struggles so much with her own health and depression, it breaks my heart to think what she will have to face once I am gone. My wonderfer OH will get on with his life after a while of sadness, I don’t want anything else for him than to be happy. 4 years would be lovely, I suspect it will not be that much, but I intend to make the most of what I do get for as long as possible.

Hi Jaquie, I did smile at your screen name, it’s great! They are doing thier best aren’t they. I guess it must be hard having to tell us what they do and then watch some of us fade out of existance, no matter what they try. Soul destroying I would think. It’s only been a week since I found out, so it’s early yet for me. I will be ok, we cope don’t we, even when we think we won’t. I have lots of plans of things I want to see and do, and everyone is being very supportive of them. So here’s to enjoying lots of experiences, so that when ‘it’ comes I can look back and go, whew, what a ride!

Hi Ostrich, thanks for the hugs, always welcome :slight_smile: It’s funny, but I felt invincible the first time, I still can’t get my hear around what the world will be like when I am gone. But then I don’t think we can, after all, we are always here. I have never been afraid of dying and am still not. I am very afraid of how I will die, I just hope I have as much time as possible between now and then to do all I want to do.

Hi Jenny, thank you for your support. I do find this place a great help that’s for sure. It allows me to ‘talk’ through what is in my head and get others opinions on what is happening, I have also learnt a huge amount about this disease and being one of thos people who needs to know, that alone helps me. So thanks to you an everyone else.

Hi Jane. As we have found, we share a similar version of all this, so you better damned well stick around for ages ok!! I am sorry you are feeling so unwell, I am lucky as right now I am doing ok, managing work, my dogs and even went out for an evening although paid the next day. I can totally empathise with hating feeling ill, it’s something I have never been as I don’t ‘do’ ill. But now I have to accept, I am, and I will never not be ill again. That is really hard to come to terms with. As for coming to terms with dying early, no b***** way will I ever accept that, I am angry as hell at what will happen, and angry that money is wasted in develping drugs the world over on drugs that don’t save lives over ones that do. I want a god damned cure and I want it know. Of course, I know the reality, it’s not coming for me, especially being one of the triple negatives with where I am now, any news drugs would be appreciated however :slight_smile:

Thank you to you all. I am sorry to be here, I am sorry that you are all here, this disease steals so much from us, but it cannot steal what we don’t let it, for me that is my spirit and my hope.

Love to you all

Nikki

9

Hi Nikki,

I just wanted to say…“what a lovely post” You’ve said everything I feel, but expressed it much better than I ever could. This is indeed a club nobody wants to join, but there are so many amazing women coming here, all of whom have a really hard time, but everybody still manages to help the others. I firmly believe coming here has helped me manage a lot better than I would have done otherwise.

love Maroke

10

Hi Maroke, this place is a true godsend to me as well. I think I would have gone totally nutz without it. Everyone is so amazing, so caring and so thoughtful, even through thier own traumas they reach out to those in need.

I only hope every woman (or man) who needs it, finds it.

Best wishes to you
Nikki

11

Thanks for the reply.

Its abit of a minefield all this cancer lark at times. I know someone (I think it may have been Jane) explained triple negs to me awhile back. When I was first dx I didn’t realise you could actually live with cancer. I thought you were either cured (and lived with fear of returning) or you died. I feel rather lucky as I have options available in my treatment (obviously I hope to not use them up too quickly). I’ve had my secondaries nearly 2 years and still not had chemo, hormone therapy seems to be doing the trick, fingers xd it continues. I dread the day onc tells me there is nothing else, but I don’t dwell on this.

Take care Nikki, I’ve thought about you alot these last couple of days.

Maroke - hope you are keeping ok, you’re often in my thoughts.

Lynne x

12

Nikki

I just read your thread with shivers and tears.

Our stories are very very similar.

I was originally dx in July 07 - had chemo, mast, rads which finished March 08. September 08 had full node clearance as I found cancer in remaining nodes (original partial clearance was clear). They reckoned this was a ‘skip’ lesion. Less than 8 weeks after this surgery I found a mass on upper chest wall - they planned surgery as they though recurrence but CT scan revealed mets in lung and other questionable areas.

So - I too have gone from thinking surgery to ‘cure’ me, to terminal. I too am petrified by the rate this has happened and am hoping against hope that the chemo I am starting on 28th will hold this at bay - but I have a deep feeling that this is going to progress quickly - as it has already.

How do we get our heads round this?
I saw my counsellor today - and said to her I want to live the rest of my life living, and not the rest of my life dying…does that make sense?

I too am only 40, have a 15 year old child and go from being numb with disbelief to tears. The kindness shown to me already by friends has been overwhelming - only wish it was not for this reason.

As you say, there is nothing anyone can say to make this easier. I have had my practical ‘head’ on, have seen macmillan advisor re benefits, financial advisor, have solicitor next week and have ordered memory boxes and cards for my daughter. Have thought lots about what I want for my funeral - will organise that too early next year. Some may say I am jumping the gun, but to me it seems right, and I feel if I get all this done now I can get on with living the rest of my life, however long this may be…I dont want to be rushing these things at last minute.

My heart really does go out to you as just about everything you said has struck a cord. I am off work just now - cant be supportive to my patients and families when I am struggling myself.

You take good care
Are you starting chemo?

Love
S
xxx

13

Hi Lynne, it is hard to think how I can ‘live with’ this disease but of course many do. I glad I knew of this site from the initial diagnosis as when it came back, I kind of knew that there were at least some options. I guess the worry is not knowing ‘how long’ do I rush to do all the things I want now, after all I certainly don’t feel like I am dying here. I feel pretty much ok except from a little chemo tiredness and the throat sensation. Do I wait a while. How do I approach what time I have left… so many questions I am asking myself. I also am finding myself getting a little selfish, OH mentioned was getting a bonus, felt like we should blow it but he doesn’t want to. I got angry. Then I was upset with myself for wanting to throw a ‘but I am going to die’ in his face, what a horrid thing to do. *sigh*

It is early days yet, I hope to have a couple of years at least, although I fear it’s moving pretty quickly and it may not be that long. They are adding gemcitebine to the next one, as there has been no releif from the plan old carboplatin. Scared that this is third type of chemo and they are not beating it, actually, just plain scared of it all right now.

Thanks for your support Lynne and I am really pleased that the hormone therapy is working for you, and for all the other ladies that get success.

Nikki

14

Hi Sparkler, sorry for making you cry hun, sounds like you have my problem SCFNBRD or ‘spontaneous crying for no bloody reason disease’ …! :slight_smile:

I know EXactly how you feel about the speed of this. Having been through chemo such a short time ago, for it to come back so quickly is where the fear stems from I think, and we sound very alike in that. I read of the woman on here who have been ‘lucky’ (figeratively speaking) to manage many years with little effect, but then they my heart goes out to them as well, as lets face it, we are waiting for it to get to the point where we can finally see our end coming at us.

And that is the part I am struggling the most with, the end of me. How can there be an end of me, I am here, always here. I try to think of it as just going to sleep, after all, I do that every night and don’t know I will wake up the next day so maybe that is all there is to it, modern medicine can control many of the worse effects of it all, but eventually it’s just a long sleep. But right now, I am healthy (in the scheme of things) I am fit (well as fit as I was for a lazy bint) I am living life, doing my job that I love, enjoying the normality of it all in between the treatments and periodic sickness, so how the f***** heck can I be dying.

Living the rest of your life living, not dying makes perfect sense Sparkler, that is the best I think. Do all you want, enjoy it, just ‘be’ you. I personally am not changing anything, other than there are a few things I have always wanted to do that I am pulling forward so I can have a good chance of doing them, for instance we’re planning a trip to Iceland as the aurora is something I have long dreamed of seeing. Hopefully will do that in March for my 41st birthday.

I am working as it’s so so important to me and I don’t have to a role that requires me to give ‘care’ to others, I can understand why you cannot do that right now as it’s such a drain on a person to give everyday I should think. Life’s about how you want it now, how you feel it, how you experience it and it is a time to put yourself first in all things surely.

My heart goes out to you in having a daughter, I am lucky in that respect I never could have children, it must be so terribly hard for woman with that additional responsiblity, although on the other hand a nice thought to know that you will live on in thier hearts and minds for many many years to come.

Where do we find the strength to do this. How do we manage. I often have wondered this over the last couple of weeks. But we do, we get on with it, and we make the most, because it’s all we can do.

My 3rd chemo is on the 30th, they are adding a 2nd drug to try and stop the spread, god I hope it works. You start a few days before me, lets both keep everything crossed that these drugs stop it in it’s tracks ok!

Hugs
Nikki

15

Hi Nikki

Thanks so much for your comments. Very eloquently put!!

I read your previous comment to someone else about how quick do we do things?? I am getting all the practical side of things out of the way just now so I can get on with living after that!!

I sorted through loads of photos yesterday - chucked out loads that wouldnt mean anything to my daughter or friends, but have kept others for my daughter and friends to put in memory boxes. I just hope these boxes are a long time in the making - ie I can keep adding to them for years

I was out last night and felt ‘normal’ - I didnt forget about it by any means, but myself and one of my best mates have developed a bit of a black sense of humour at times and make jokes about dying etc - could see people looking at us in horror - but we have had 2 weeks to get ‘used’ to it - and if I didnt laugh I would cry. Laughter is good - altho I know there will still be many tears to come.

You take care. I will keep everything crossed that the next drug they add in works for you. I really hope Taxotere starts to shrink things down for me - I can feel the tumour on my chest wall growing by the day - its horrible

Take care for now
Hugs
S
xxx