Coping

hi Bess - i feel exactly the same as you - my husband has stage 4 cancer also and i can bawl my eyes out without even thinking these days. Its the emotional stress and like you i am struggling. I'm having counselling which is a good outlet and i know i need to live in the present but there are so many things to worry about. I want to talk a lot more than my husband does - he's convinced he's going to beat it and so not wanting to have the discussions i feel we need to have. I'm not sure i can help with your question but i just wanted to reach out and let you know you are not alone - my counsellor says all these feelings are totally normal as i'm grieving for the life we had and the one we thought we had planned - our kids have just left home so this was now supposed to be OUR time, and that has all suddenly changed. i had quite a good day yesterday but so far am very tearful today - just feeling sorry for myself and my husband is in bed and i did loads of chores before i had to start work so was generally fed up by 9am. just take it hour by hour if you need to - sometimes for me i cant look further ahead than that because thinking about the future is just too awful. 

Hi Hermes

Thank you so much for your reply.. it means a lot ... your words say it all  My hubby also thinks ‘we’ll ‘ beat it which is good but like you I just fear for the future and yes selfish me being by myself. We have no children so there’s just the two o f us we have a Motorhome and have the whole year planned...... hubby is a farmer he loves his work and so just wants to do what he used to do..... hopefully that will continue . I just function that’s all I can say I am sure you are the same, chores have to be done but tears are streaming down my face as I write this. How the hell are other folk coping. We went to see the consultant 2 weeks ago and tears were streaming in the waiting room I had to turn to ‘look ‘ out of the window, other folk ‘seemed’ so composed........ I like you need to talk about it but hubby has had enough of that , ‘ we know the score we don’t like it but we have a plan’ is what he says and he is right but plans change  don’t we both just know that! and I just fear/ dread the future 

He says I will cope because I am strong I am only strong cos he’s there......I know I have to stop these dark thoughts and you will know that to but it’s easier said than done isn’t it?

Doesnt matter whether it’s day or night tears flow... and your Councillor is right  we must live in the present and that’s what is frightening .......

As you can tell I to am having a bad day then I feel guilty becauseit’s not me with the cancer..... I don’t even like saying that word let alone write it, as I said earlier I just never thought this would happen to us, my husbands reply to that ‘ it’s got to happen to somebody ‘

Thank you so much for taking the time to reply it has helped and please keep in touch

Take care

Bess...PS some days I don’t even care whether I’ve combed my hair or not, let alone ironed my jeans!

Hi Bess and Hermes I’m truly sorry you find yourselves here but there is a lot of support, care and information in these forums. 
In June 2021 my husband was diagnosed with Stage 4 inoperable non small cell lung cancer and I can honestly say that at first there seemed to be no future!!!
And every emotion you have mentioned I also experienced daily…. hourly at times and especially the guilt at feeling I had no right to be so sad, angry, hurt because it wasn’t me who had cancer, but then reading other posts on here I grew to accept that the whole family is living with and affected by the diagnosis just in different ways.
He has been on combined treatment since then (pemetrexed, carboplatin and pembrolizumab), he did have a severe liver reaction to his first cycle which delayed further treatment for almost 3 months but his latest scan in December shows some of the tumours have shrunk. Which is really good news. It’s not a cure but every extra day is precious.
He is now on pemetrexed and pembrolizumab (no carboplatin) still three weekly cycle and is doing okay, extreme fatigue is his worst symptom/side effect.
I just wanted to say that now we are almost 9 months since diagnosis I have more days when I feel “good”, there is no cure but there is a life it’s just not the one we imagined.
Anyway I wanted to say that I now have less sad days (even though I do have days when I’m angry and in tears) and more days when I am able to plan nice things to fit in between his treatment etc. And I hope you can also reach this point. 
Our journey so far is in my profile if you care to read it. 
Grasan

Hi Bess,

I am so terribly sorry for your news, and I can completely empathize.  My husband has had prostate cancer for 11 years, but 2 years ago was told that it spread into his bones.  After various treatments, he is now on palliative care as no more treatment is available.  The cancer is in his bone marrow, he also has anemia and is terminal.  The biggest effect on him has been that once told that it has spread, he started to suffer with depression, and this has blighted our lives since.  His quality of life has been practically zero as he spends long periods of time in bed and no amount of counselling has helped. Understandably, this has affected the whole family, and myself in particular as his main carer.  I have been through a whole host of emotions during the past 2 years, from sadness, crying, regret, anger, guilt, resentment etc. etc.  and I am sure that you will experience all of these too.

But it is important that you don't blame yourself for any of these emotions.  They are all perfectly normal.  What is important is that you find some way to look after your own needs, both physically and mentally.  Whether that be by talking to family and friends, your GP,  by accepting counselling yourself, or by simply taking time out to do something just for yourself on a regular basis.  We all react differently, and what works for one may not work for another. Be kind to yourself and remember that you are not alone. Reaching out is not a sign of of weakness, but rather its a sign that you acknowledge that you also are going through this terrible illness and, like your husband, also need help to navigate all the ups and downs that it will bring.

Hi ChrisB1

Thank you for taking the time to reply with such meaningful words.........

There are so many folk in the situation and having a reply like yours really does help

I am keeping myself busy and do take time out but feel so guilty for doing it somehow doing ‘normal’ things to me in my head is accepting the situation and I just dont want to. I know I must I’ve got no choice....... friends help yes but talking to folk who are going through it and actually know what I mean how I feel is sometimes just what I need

i know all the talk in the world isn’t going to give us our ‘life’ back.......It’s scary, it’s the not knowing, it’s not being in control, it’s going from one appointment to the other....... it’s everything that everyone experiencing cancer is going through

Thank you again keep in touch

Bess xx

hi Bess - i had a lightbulb moment this morning. The Marsden (where Marc is being treated) had referred him through to our local hospice and one of the outreach people visited today. There wasn't much advice given, other than keep in touch but after she left Marc said to me "well that was all depressing, its like everyone knows i am dying" He then said he will accept he will have to be on medication for the rest of his life but if he thinks he is dying he might as well give up now - so i think denial is his way of coping. Doesnt help me of course but it did finally clarify what i thought was going on in his head so now i can work on some strategies to help him come to terms with things. 

I, of course, was in tears during the meeting - and Marc kept looking at me as if to stay stop it, but i couldnt - anyway - lots to talk to my counsellor about later. 

How are you and how is your day? 

J 

Hi Hermes

what a day you’ve had......how on earth do you even think about those strategies.......folk say you’ll find the strength to cope yes we will but that’s doesn’t make it any easier in our heads

we are born we die ...... folks answer to that on here is not yet!

mixed day for us/me ... hubby ( Paul) Birthday  today normal  birthday would be work meal out ....oh no not this year

he was really ill yesterday ( turns out all side effects arrived together) didn’t know this so went to treatment centre they saw him then we had to make appointment to see GP apparently a GP must see a cancer patient the same day either telephone appointment or in person so got a face to face appointment and he came out with a boat full of stuff hope it all works

like your counsellor says we grieve for the life we’ve had and me being totally utterly selfish want that back..... and that’s when all the emotions come into play. Bottom line is we carnt change it 

sending you positive strong vibes to help you through everything....Me.....continue to bumble along cos I just carnt get my head around this ‘situation ‘

Take care

Bess

Hi Bess - i hope you and your hubby had the best birthday he could in this situation. Marc's birthday was in January and the day after he was admitted to hospital for 2 weeks to recover from bad chemo effects - so his birthday was very quiet aswell - in fact, i've since shown him the cards and he was so poorly he doesnt really remember it. I hope you get to celebrate with a meal out another time. I keep booking things in hope we can do them, so with a fair wind we will get out for sunday lunch but i am learning that i can't be sure of that until sunday morning - i have had to cancel reservations many times and just want to do something "normal"   I had my counselling session after i posted yesterday and my counsellor had a different perspective when i mentioned denial. She kindly talked me though the fact that we all have different coping mechanisms and Marc has chosen his - so probably not really in denial but not letting his brain open up to that emotional pain. I hope the medication is helping your husband and he starts to feel a bit better soon. Look after yourself, J 

Hi Bess, 

Sorry to hear about your husband - big big hugs.

I think there is no right way to deal with how you're feeling you just need to feel. I try to keep it together for my family - my dad has kidney CA - and I find that when I just try keep it together and not say much I end up exploding in the wrong way. In recent weeks dad has been very unwell and does not want to do anything and spends a lot of time in bed as he is in pain. 

If you feel angry, sad, happy or just feel nothing at all I think it is all fine - but as you say every conversation ends in the dreaded C word. It is easier said than done but try to avoid it otherwise it just becomes consuming. This is something my mum does (understandably) but I really try to stop her doing it otherwise it is going to take over our lives completely and that's what this devil illness wants! Try to talk to your husband about anything else - "what we going to have for dinner?" - is a favourite for my mum!

Reading these community posts are also a good way to keep in sane as everyone feels nearly the same and you realise you're not alone in the slightest. 

L x

Hi L

Many thanks for your reply and hugs….much needed!

I think deep down we all know what we should all do and I’m sure all of us do do that….. it’s just things get tough and you have to face the fact that due to diagnosis life will never be the same again……and yes you yearn for that life back again

I have to realise things are different now and I have to get on with it….. accepting that and of course the diagnosis isn’t  easy for any of us either us the carers or our loved one with the dreaded c word

But it’s good to know I’m not the only one going through this dreadful time reading folks comments on here makes me realise that

Take care

Bess