Dear Winter46,

There is a book I can recommend to you to help you through this:

Patrick Qullin : Beating cancer with nutrition

I was diagnosed with Stage 2 breast cancer in November last year - absolutely NO symptoms - just a routine mammogram.  I am also very fit (do a lot of Xfit), as you know, its indescriminate. I have found this book to be a great help because it focuses your attention onto something else - your diet rather than statistics!  Don't sweat the stats - spin your thoughts to making sure both you and your husband don't become part of the stats!

My friends and family couldn't cope - from the outside it "looked" like they were cutting me out but they were simply struggling - the reality is someone close to them has "got it" and they feel if they stay away, 'it' 'wont happen to them'.  I liken it to the Axel Foley scene in Beverley Hills Cop, where he puts his hands over his ears and says  "lalalalalalalal I'm not listenging". 

My husband felt guilty too but we made sure we were ABSOLUTELY honest with each other on a daily basis about how we felt on that day.  That's how we managed it - day by day. And honestly, before you know it you'll both be managing this and you'll look back thank this situation for how strong it's made you.

Hello Jayne, 

So sorry your dear husband has stage 4 lung cancer. I don't think that no amount of time makes things any better perhaps just a bit more manageable. You sound like you have a very loving relationship with your husband and are his rock. The only thing you can do through this hard time is to try and remain positive or at least neutral and don't be scared to ask for help and support. It effects the family members just as much as the patient themselves and I'm sure your children would be happy enough to help you through this time. I can't speak for family and friends and why they seem to disappear but I can only guess they might not know what to say or how to help. As you said you've read the statistics' and you're petrified, but that's just exactly what they are 'statistics' and your husband isn't a statistic he's an individual and there's nothing what so ever to say he won't be in that minority of people who do live beyond expectations or even manage to beat it completely, because it does happen. 

I know you specifically wanted to hear spouses stories and I'm afraid that doesn't apply to my story however maybe some of what I say may be of some help or just to make you feel like you aren't alone. 

I've just turned 27 a matter of weeks ago. And a week before my 26th birthday in April 2015 last year my Dad at 63 was diagnosed with stage 4 'incurable' bowel cancer which had sadly already spread to his lungs and liver at diagnosis. Our lives fell apart, hoping each day we'd wake up it was some sort of nightmare only to find it wasn't at all. Everything in life seemed to have paused, everyone around us was carrying on living their lives and we were stuck in this horrid nightmare. My dad the man who was the foundation to our small family, the man who was everyone's rocks, the man who seemed untouchable was now a vulnerable man who was seriously ill and deteoriating before our eyes. He's been married to my mum for about 46 years and been together since they were about 16 years old. My mum's soul mate, her whole world, her being, her rock, her best friend, her lover, her husband, her everything was going to be taken from her sooner than expected. Their future plans, retirement etc now ruined because of hospital appointments etc. I've seen my mum cry, and I know she mostly does it when she locks herself in their bathroom at home, she's scared, worried and stressed but she's standing by him and for that reason he's doing ever so well. With our positivity he's fighting with every part of him, he's keeping positive himself which really does help massively. He's following all the guidelines, keeping himself active, resting when he feels he needs to, keeping wrapped up when it's chilly and away from those who may be unwell, he's making plans for the future and has told us he's not going anywhere...he's stubborn :-) but that's what I love about him. He almost died last year and needed an operation on his bowel otherwise he'd of died within a matter of a day, he also suffered from a stroke 3 months ago but he's doing ever so well. So much has happened in the last year but despite all that he's still going strong. I hope that this let's you know that no matter what someone goes through its not always an immediate death sentence there is hope. We could spend our whole time crying and worrying using up our energy but it doesn't help and won't change anything. I find its best to try and find some happiness amongst all this pain and appreciate each day we all wake up and are able to enjoy the little things in life like the sun shining, the wind blowing through our hair, the birds tweeting, the sound of music, sipping wine and eating our favourite foods...it's about taking one day at a time live for today not for tomorrow but just for today. Make those plans, take those photos, enjoy being together. Nobody knows what life will throw at us from one day to the next, nothing is promised to any one of us. I know that it won't necessarily take away the pain or the worry about the future but if you can try to focus on some more positive things. I've had days where I scream, cry, fall to the floor in a heap but then I stand up brush myself off and try again. I have good days too where I smile and I try not to worry unless I really need to. My positivity has no doubt rubbed off on my parents and they are thankful for that. They've learnt to smile, laugh and try to live a normal life as possible. Friends and family have let us down too, some have disappeared into the background others are still around but aren't as sympathetic as we'd hoped they'd be. They either say the wrong things or nothing at all. I do get really angry about this and I sometimes find myself so close to saying something to these people. But I take comfort in knowing that those who matter are there, one day these people may find themselves in a situation like ours and they might get to experience exactly how it feels when people aren't there. 

Big hugs and I hope when he goes for his results it's positive news x 

Thank you so much for replying and taking the time to write this.  I will definately get this book as I think that now his treatment is finished we need to focus on something else and although we eat healthy I think we could do more.  I AM TRYING TO REMAIN POSITIVE AND GIVE HIM POSITIVE VIBES BUT THERES SOME THINGS i NEED TO TALK TO HIM ABOUT SUCH AS SHOULD i GIVE UP WORK and his wishes etc but its like we are avoiding each other.  We do take one day at a time and we have some wonderful friends and family and they are the ones I know are there for us.  I hope you have good friends and family too as its so important. I am so grateful for your reply.xx

Thank you so much for replying.  You sound a lovely daughter and my own daughter is 30 yrs and is a real daddies girl just like you.  She is so strong and her smile uplifts us as she comes through the door with her gorgeous 8month old son called Theo.  She is so positive and we are so lucky to have a wonderful dtr and 2 sons. I try not to burden her but she knows straight away when im having a bad day and she doesnt tell me snap out of it, she gets up and we go for a walk and I cry and feel better but i do feel guilty afterwards that she has her own sadness to cope with.  She never shows us though, thats how strong she is.  Im sure she cries on her own pillow or to her wonderful husband. 

I dont know what to do about work.. I work 3 days a week and love my job but also want to spend time with Mark as I dont know how long we have together.  My husband wants me to work as he thinks its good for me.  Im sure ill come to some decision soon,  Hope your Dad is ok, thank you again xx

Hi Jayne,

I was saddened to read your post because it paints a picture that I very much relate too. People do recover from cancer and therefore it's important to stay positive, but having said that, alas my partner was one of the unlucky ones and died of lung cancer thirteen years ago. I too have recently been diagnosed with stage 4 lung cancer and therefore I'm writing as one who is gaining experience of living with cancer from both perspectives.

My overriding memory of living with my partners illness was that it was a process rather than an event and that as their illness progressed, we experienced a number of losses. One particular loss that sticks in my mind was the time that they no-longer felt well enough to come shopping with me, after which time I used go shopping, sometimes in tears, knowing that even though they were at home, they would never again be walking around the supermarket with me.

All in all, it felt like living on a roller-coaster, often with hopes raised, followed by hopes being dashed. What helped us get through all this was, as you mentioned living in the day, trying to make the most of each day, dealing with things as they occurred, making sensible plans and adjustments that helped us and try to enjoy each day as much as we could.

It seemed to me that it was important that I faced the situation according to my partners wishes. They coped by not dwelling on the situation, which I found difficult to do, and so I would unburden myself through the support of my friends and therefore this helped me to retain an outward display of strength at home whilst inside I was falling apart.

I am sure everyone is different and that also goes for relationships. Your husband is lucky as he no-doubt knows you care and at the end of the day all we can do is our best. I do wish the two of you all the best for the future.

I know this is an old thread, but it has given me a lot of encouragement.  Im a housebound caretaker and finding support has been tough.  Its great to know that people are supporting each other online.  I feel very guilty about my reaction to this situation.  Ive been a support to other caretakers of terminal cancer patients in our family and this position is a whole new thing.  Thank you