Thanks so much for your replies. It helps to know that others understand.
Had meeting with onc today and my fantastic bc nurse. With it being xmas and new year, and chemo clinic obviously fitting in more people in less days, they have set up xtra clinics on the sundays - ie 21st and 28th. I was provisinally booked in for 21st having said I wanted this started sooner rather than later. BUT, have now decided to leave it till 28th to start chemo so I can enjoy christmas with my family. No- one can predict - BUT , what if this is my last christmas - I dont want to regret having spent it feeling crap. Hopefully I will have many left to go, but the speed my disease has progressed is scary, and delaying chemo for 1 week is going to make no difference to my long term prognosis so thats my decision.
Have lots of sorting out of paperwork etc to do over next couple of week - I am very practical minded and like to be organised and get things going.
I am now at the numb, unfeeling stage, which is really weird - am saying all these things but it does not feel like its about me anymore??? Am I strange?
I know I am prob going to have more bad days than good at the mo and think I am running on auto pilot but spose thats normal.
Again thank you all and good luck with whatever stage you are all that
Lots of Love
S
xxx
I know exactly what you mean about it not feeling like it is you any more, Sparkler. Sometimes it really does feel as though I am talking about another person when I talk about diagnosis, scans, treatment etc. I think it is a good decision to leave the start of treatment till after Christmas. You just don’t want to be feeling yuck for what is going to be a special time for you.
Just to say I know how you are feeling the whole thing is one big bag of pooh!
Maybe we will all wake up and be free of these wayward cells!
I am going to bed and just hope we all have better news when tomorrow comes.
Hi Sparkler
Just to say, it is a real shocker when you get the secondary diagnoses (mine is bones and lungs), I was in a black hole for ages, all I could think about was dying (sorry to be so blunt) BUT now I concentrate on the living, I don’t know how much time I have left (could be months, could be years) but what I do know is that I am going to enjoy what I have and I am going to fight this the little sh*t as much as I can.
I did manage slowly to pull myself out of the black hole I was in, with help and support from the friends I found on this site, my friends around me and my family.
This site in invaluable and so are the friends I have found through it. Although my friends and family are fantastic no one quite understands like people in a similar situation.
I too had taxotere and although not pleasant (but what chemo is) it really attacked the cancer and I had significant reductions on it.
Try and enjoy this Christmas, we are all here for you when you need us.
x x x
when my onc said I had to go on a chemo break I fought her tooth and nail. Had this crazy notion that if I didn’t keep “doing” something the cancer would get me while I was on this break. Now though, feeling so much better without the chemo, I’m glad I am getting this Xmas with my kids and family feeling like my old self. During the past few months I’ve writen letters to loved ones, arranged my funeral (sorry to put this so blunt), made memory boxes for my kids, wrote jounals for my kids and generally did all I could think of that would be of any use to them and it has given me a sense of peace knowing that all that is done apart from adding things to the memory boxes and journals now and then. Don’t get me wrong, I still get the sleepless nights and crying spells, but I can now concentrate on holding this c…y disease at bay and sticking around for as long as possible. That numb, unfeeling stage will pass. I hope you have a wonderful Xmas and am planning to wish you one next year too
Hi Sparkler
I know what you are going through. I was diagnosed with secondaries to my hip last May. I was 36 at the time. The oncologist was so blunt when she told me -All she said was ''You have secondaries and we can’t cure you".At that time and in the following months I was in constant floods of tears and sunk into a deep depression that I am only just coming out off. At the time i thought secondaries was an instant death sentence. But I saw last christmas and am now looking forward to another. I still have days of deep gloom but most of the time I am trying to think positive thoughts and cope. Before cancer I constantly burnt the candle at both ends, neglecting my family for work and various hobbies. This past year I have learnt to slow down and appreciate what I have more than ever.
Sending you all my best wishes
Thank you all so much for your words of comfort , understanding and encouragement. I have taken note of everything each and every one of you has said. I know everything I am feeling is ‘normal’ - whatever that may be. I just now have to learn to adjust my life - again - and adjust to living my life with this hanging over me.
I am having a bad day today, have just wept buckets.
I know to expect this, but oh my god!!!
I am scared of dying (hopefully not gonna do that for a while),but most of all am scared of not being here for my daughter - for her graduation, wedding, etc etc. I just never thought I wouldnt see her grow and blossom into a young successful woman - she is such a lovely, happy 15 year old girl,and I am so proud of her, I just cant bear the thought of not being around - even tho I can be a narky bitch to her at times!!
Please try and keep you chin up. I know i can’t offer you great advise as i don’t have and pray to got i never have secondaries, I also know its no comparision but i too have frightening thoughts for my 3 daughters aged 8, 5 and 2.
Sparkler, I am so sorry you are having a bad time. It is the pits. I think I understand a bit of what you are going through. My eldest daughter, who was just sixteen when I was diagnosed with secondaries a year and a half ago, has turned into my fclosest riend and I too can’t bear to think of all those times when mothers are supposed to be there for their daughters, where there will be a gap and where, I guess, she will cry the tears that I cry now.
It is so,so hard and the sense of loss has never left me, but I do find it easier to live with - possibly through not thinking about it so much and possibly because I have taken every opportunity now to tell her how much I love her, to talk about her future and to encourage her to live her life to the full, whatever happens. I got a bit worried when she said that she would not go to university if anything bad happened to me before she left home. This disease puts its mark on so many areas of her life, but I don’t want it to stop her from following her dreams.
In the darkest moments, I remind myself of some wonderful women I know who, for one reason or another, lost their mothers when they were younger. They are still compassionate, clever, caring and well balanced despite, or maybe even becase, of their loss. My daughter actually doesn’t need me to make her into the person she is gong to become. She will become wonderful with or without me, I know.
Hi Sparkler
My daughter will be 15 next month and I veer between barely suppressed fury , if I get another shrug ans a “whatever” I won’t be answeable for my actions! and tears as I will not be here to see her reach her potential. She is very bright , musical and is involved in so much and for me thee is going to be so much that I will not see including her graduation etc.
Deirdre is right though , distressing though it will be not having a mum she is more than well equipped to make the most of her life.
I try not to dwell on that aspect with either of my 2. My son is in his Alevel year and has his offers for university. His chosen option is quite far away and I do worry about what if but equally I don’t want his life ruled by my illness any more than it has to be.
This is an emotional weekend as I had daughter in school production on Friday concert last night and son performing in his tonight. I have to wonder how many more. I am so proud of both of them and hope that with their dad’s support they will achieve their goals
Love Kathryn
My ex hubby, and daughters dad has a partner - they live together and are getting married next year sometime. My daughter gets on great with her which really is good, but I still get angry when I think that she will be the one to do all the things I should be doing as a mum. I know my daughter will always know who her mum is, and that I have been a huge part in making her what she is today - a very happy, easy going, outgoing girl who is popular with all her mates, so should take comfort in that - but it aint easy.
I know my daughter will get on with her life without me, when the time comes but I just never imagined not being there.
Yes, I would be angry, too, Sparkler. And yes, which of us would have imagined this when we first held our kids in our arms? It’s so hard. But please try to let your love for her hold you up, not bring you down.
There’s a really weepy but good film called Stepmom featuring Susan Sarandon as terminally ill mother and Julia Roberts as step mother. There’s some beautiful lines in it, which I can’t quite remember to quote,of Sarandon and Roberts talking about the imagined wedding of Sarandon’s daughter. Ultimately an uplifting film of hope. Part of it is set at Xmas.
I don’t have children but firmly believe that good mothering is internalised and lasts a lifetime…losing a parent too young is always very very sad but children who have been loved and have others who love them will fulfill their own dreams.
Hi Fiona,
I have not been posting for a good while now, I cannot say why other than that I needed time at the end of treatment but my apologies to both you and Lindiloo for my sudden silence. I have just come on and read your devastating news, I feel such sadness Fi you have been through so much already I had to let you know I am thinking about you and that I am always here if you need a mate to listen.
Sending you love and lots of hugs
Jillxx
I have seen the film as well …dont think I could watch it now, although I really wish my son would have a step mother after my death, (I think its unlikely given his disability that anyone will take on my husband and son). it is actually quite a good film because of Susan Sarandon-
Sparkler I really do think its about what you give your children when they are younger, but I understand what you are saying…its really hard and I think dealing with the children is the hardest, I hope you are OK this evening.
I know what your saying about its what we give the children when they are younger, and I know I have been a huge part of the way my daughter is now. AFter the 3 years we have had, I am surprised she has not completely turned into a monster, but she has not, she is as caring and happy (as happy as she can be), as she ever was but she just keeps waiting for more bad news to role in, as it has been non stop for 3 years - she has been seriously ill, my dad has been ill with heart probs, my mum died, her other granda died and of course all my bc stuff since July 07. Thank goodness she is a sensible girl - her ‘stepmother’ is lucky to have her in her life.
Sorry to hear your despair about your son not having a stepmum - but you never know - there are loads of lovely people out there.
I am glad you have had such wonderful support from others who are in the same position. Thos of us who have been fortunate so far can find it difficult to know how to express our thoughts and feelings . I for one certainly don’t feel ‘qualified’ ( for a better word). I do want you to know however that I think of you a lot , and all the others in the same situation, and I really really wish you the best Christmas you can have AND
many more.
I do hope you get on alright on the 28th please let us know.