Feeling really down just now

Well it doesn’t happen often but I cracked last night and once the tears started coming they just wouldn’t stop. I haven’t felt well at all since the end of April, not eating very much and a lot of tummy problems. I was told a week ago that the trial I have been on - which was Sutent - has stopped working and they are now changing me to gemcitablne and carboplatin together. I know that my quality of life really did suffer on the trial and that i really wouldn’t have been able to continue with it for much longer even it it had continued to work but i just feel that everytime something stops working the time is getting nearer for me to die and I am struggling to cope with this at the moment - I wish I could just get a little hope to help me along.

I have started looking at my daughters aged 10 and 7 and wondering really morbid thoughts like if this will be the last xmas i will have with them or will next year be the last birthday I’ll be with them for, how will i cope having to actually tell them that there is no medicine left, how will they cope when I go.

I seem to be really angry about it as well, I said to my husband last night that this is horrific and that it is so much worse than just being knocked down by a bus. It’s just like a death sentence slowly ticking away and I’m struggling to put this into any sort of perspective at the moment. I feel scared and really angry because I don’t want to die and leave my family and my children and the choices that we have in this country are so restricted. Scotland is falling way behind England in transforming any current systems in place and I feel really let down. It’s bad enough having to know I am going to die without knowing that I am not getting the best care available in the world. I even found out that the Royal Marsden does like Phase1 trial and things so that at least if you chose you can have the hope that one of these will work for you but in Scotland there is not one hospital that does Phase 1 trials. So what does that mean for me, that when my options are running out.

I really a few friendly people to give me a right kick up the bum and to make me pull my socks up, I know I have to stop thinking about things so negatively but I’m really struggling to come to terms with not growing old and watching my children grow.

HELP!!

Diane

Hi Diane

Please do call our helpline for a confidential chat with one of our helpliners, it may help to talk things through with someone and they may be able to point you in the direction of further advice, the number is 0808 800 6000, weekdays 9-5 and Sat 9-2.

Take care
Lucy

Hi Diane,

Sorry I won’t be much help as I have been knocked out by my last chemo. However, I’m in a similar position to you and have felt and thought everything that you mention. I can’t believe that people in our situation can remain positive and optimistic all the time - however hard we try!

Well done for asking for help, I’m sure there’ll be women who can offer much more constructive advice than me, but I just wanted you to know that you’re not alone and send you a hug xxx

Hi Diane

I am really sorry that you are feeling like this you are bound to get days like this it is only natural. It is really hard to keep going and to put on a brave face all the time. I know thats what we mums try to to do. ( my children are 19 13 and 9) Sometimes it all seems too much. Its been 2 years since I was dx with secondaries straight off and it has taken most of this time to come to terms with it.
I have also had the help of a clinical psychologist who I see on a regulat basis. ( I don’t know if you have someone like this). It may be also worth while seeing your GP who could perhaps put you on some anti-depressants it might help you get over a particularirily bad patch.

I am really sorry that I can’t help more but we do know what you are going through on here so please do keep posting and we will try and help if we can.

take care lots of love CAroline

Hi Diane,

I feel I could have written much of what you say, word for word, on occasion. Not at present, as I’m on a bit of a cancer-up right now but I understand totally what you are saying. I have no words to make you feel better, just wanting to share with you that I know how you feel. Earlier in the year I went through days, weeks, months of feeling like this and nothing could make me snap out of it. I would look at my children (7 & 9) and wish I could stop wasting time being so miserable and grizzly to them. It is unbelievable living with the knowledge of our foreshortened lives and it is the most difficult thing in the world to keep a lid on. I don’t think there is a way of getting it into any decent kind of perspective. There are just times when we can manage it for whatever reasons, and times when we can’t.

I do hope you manage to get things sorted in your head a little. Maybe just by sharing with us will help.

Take care Diane,

Jenny
x

Hi Diane

So very sorry you are in such a tough place right now. I googled end of life care Scotland and found a lot of links to polcy in Scotland. Also the Marie Curie website was interetsing: they have a hospice in Glasgow. They are a good organisation think so a call there might help you.

‘Coming to terms with’ the expectation of dying is horrible and hard for anyone…don’t be hard on yourself…I think from your posts that you are a strong and determined woman…and certainly not in need of a kick up the backside.

I hope the new chemotherapy regime helps.

And I was posting at the same time as jennywren…I think what she says is spot on.

very best wishes

Jane

Dear Diane

The thoughts you are having are all thoughts that I have also. My children will be 10 and 7 at their next birthdays in August, so we have something else in common.

Don’t know if it will help but my coping strategy is to use that anger against the cancer and say “you may be taking away my right to see my children married, to see my grandchildren, to have a retirement etc etc but you are not taking away today, today I am going to live and be happy that I am still me, doing ordinary things”

I live in hope that all these “new drugs in the pipeline” that have been talked about for so long will finally make it through to us.

Good luck, Diane, hang on in there and don’t give up hope.

Linda
x

Have not a clue what is wrong with this today but have lost half my post really sorry as this makes no sense to me. Will be back later.

Dear Diane, Isn’t it crap when we feel like this - I’ve certainly been there too, I’m guessing most of us with secondaries have, I know certainly that when I get frightened it opens up the floodgates, and once open it takes sometime to restore and maintain my equilibrium. From what you say you still have tools in your toolbox, and neither you nor I nor the onc can possibly tell how much life that can give us, we do know that our life expectancy will not be as long as we once thought, but you do not have to tell your children that there is no medicine left yet. Personally like Boney I prefer to think that it’s not going to take a single day more from me, so I try not to think about it, and when I’m in the mire I fight like hell to get out of it.

You are not dying yet, but you are certainly unwell, none of us feel great when we’ve been through what you have - be gentle on yourself

Hi Diane

so sorry you are in this place - and its somewhere that I feel i know very well - in fact your post helped me today - i thought - oh its not just me then…small consolation to you but i wanted to thank you for being so candid - i went for treatment today and was sent for emergency brain scan…they wanted to keep me overnight but i refused - now i think - where the hell has it gone now? maybe we feel such a loss of control - and so much uncertainty about what the future holds for us … not helping much am i? but sending you much love - must be so hard with your wee ones - my wee one is 25 !and she is really struggling ( she has only ever had one parent)
I feel sometimes that i have been marooned in a desert - no compass - and can’t find a way out… at other times i can enjoy and appreciate little things that bring a smile to my face …but not this week - i hope next week brings you something good…love jaynexx

I think everyone has really said it already but it is certainly somewhere I’ve been before and it’s such a frightening place to be. It’s 2 years since my secondary dx but every spring (my favourite time of the year)I find myself looking at the trees, flowers etc and wondering whether this will be the last opportunity I will have to appreciate it.
I don’t think a “kick up the bum” would work for me, Diane, in that situation but would suggest instead being very kind to yourself! It’s completely understandable that you feel like this and coming to terms with what is happening (what will happen though the timescale isn’t known) is incredibly hard. Hopefully you will get some sense of equilibrium back sometime soon but in the meantime I’d suggest indulging yourself - I find planning a few treats sometimes helps but time to adjust/think things through is what helps most.

SO sorry to hear that you are having a cr?* time of it too, Jayne. That feeling of loss of control I also recognise - something I particularly associate with times when there’s progression (or they think there might be progression). And an emergency brain scan would certainly have got me into a state of panic. Hope you don’t have long to wait for the results and that they don’t show spread.

Sending you both love and a hug. Take care

Kay xx

Hi Diane
I could have written your post. i know how you feel. My boys are 10 and 13 and it breaks my heart that I wont be here to see them become the wonderful men I know they can be.
I feel so robbed of the future and angry at this awful disease.
I wish I could say something to make you feel better but I’m afraid there are no words that will change things. Some days are Ok others I just want to go under a duvet and forget about the world.
The only thing that keeps me going is my boys - I want them to remember me as someone who lived life, got sick and died. not someone who spent all her time in tears and feeling sorry for herself.

Take Care and I hope you find some peace.

MuddyXX

Hi Diane,
I tried twice yesterday to reply to your post. In the end I pm’d you, really hope you got it. We are away at the moment so tech problems are a pain.
Hope you are feeling better and more able to deal with this roller coaster. This disease is so cruel and takes it’s toll on us. Some days we cope better than others, we can hold the fear and anger at bay other days we are swamped by them.
Thinking of you and willing you on.
Gentle cyber kick up the bum available if needed.
Love Debsxxx

Hi Diane

I too know how you feel. I cope with it more or less like Linda/BoneyL, in that I try to concentrate as much on today as possible. I try to avoid thinking too much about the future (or lack of it) as that’s a really scary place to go.

I’ve decided to think of my life in chunks of three, as that’s a fairly reasonable expectation, for me at least. So in this first set of three years I’ve decided that there are certain things I want to achieve, like sorting out our kitchen and bathroom, and visiting in-laws in Colombia again. And I’d really like to do a barge holiday, or go walking in Italy in the spring. As well as all the little, but just as important, day-to-day things with my husband and our two & a half year old.

Then nearer the second set of three years I’ll give myself some more goals.

Sad that I can’t plan anything more long term, but at least this does give me some (false?) sense of control, and something to look forward to.

Not sure if that helps, and I’ve only just recently decided to think like this myself, so not sure if it will help me on the really black days, but most of the time so far it has helped me stay positive.

Thinking of you and hope you’re feeling calmer a couple of days on.

Alison

Hi All
Thanks very much for your comments, they have made me feel better and that there are other people on this planet that really know exactly how I am feeling.

When I was first diagnosed with secondaries I did have a clinical psycologist that came and seen me and my husband at home, but we all felt that we’d went as far as we could with it - she left me her number just in case I required her again. I know that I should stay grounded and live for the day and not go to that big black place but I managed to do it anyway

I’m heading in the right direction again, thanks for your support, it helped me turn the corner.

Diane

xx

Crikey Diane - a psychologist that does home visits - I want one! Which area do you live in - I suspect not mine.

So glad you are turning the corner and thanks for bringing this to the forum, because I really like Alison’s idea of chunks of three - which I would never have thought of if you hadn’t.

Best wishes
Celeste

Hi
Just read your post and i really feel for you , its an awful feeling knowing in your heart you are not going to see your children grow up . I have 2 beautiful sensitive daughters whom like you look at them every day and wonder why and when. All i know is this is how i cope , maybe it will help you. I have kept really busy doing my memory boxes , writing stories for my grandchildren which i know i wont see. I not saying by doing this you,re giving up no not at all , just because we have cancer should we be doing all this , everyone should , none of us know when we are going to die, but at least we can leave a part of us behind for our children and our grandchildren, By doing all this it takes my mind off dying it makes me happy knowing what i am doing for them. All i know is by writing stories and making beautiful memory boxes i,m not just leaving them with nothing , you will be surprised how much time and effort goes into it all. Dont look on it as dying , you are just in the next room waiting for them when we can all be together
I know you are frightened we all are , you are not alone . I look at life like this at least i was able to have my girls and lived a good life with them , some ladies never have that experiance. I have given them all the love i could possibly give them even if i had another 20 years. I hope this has helped a little . lots of love carolm x

Hi Diane
I have just come back on to the forum after a couple of days. I think that we’ve all been to that black place and it’s very scary and lonely, I had a bad week a couple of weeks ago, I think my body has really had enough chemo for the moment but it just gets me so down which I hate.
My kids are my achilles heel, I can keep going but just listening to my daughter play in a school concert is enough to set me off well and truly. I am so proud of both of them and hope that wharever useless mothering I have done will see them in good stead, in the meantime I just grieve every so often over what I know will not be, the graduations, weddings, grandchildren, I read a quote the other day that your grandchildren were God’s reward to you for not killing your kids! I did have a wry smile.
take care
love Kathryn