Hi Duck and welcome to the forum where none of us would have chosen to be.  Just like Chris has already said the feelings you are having is very much the kind of rollercoaster journey that such a diagnosis brings. Shock, anger, fear, frustration and a deep inner sadness about what the future could or should hold.  Sadly there are no easy remedies but you do have (though you probably dont feel like it) the huge benefit of a positive talkative husband.  I joined the forum when my hubby was given a terminal diagnois for an incurable cancer linked to asbestos.  There was no given timeline other than anything from 3 months to many years and like you I felt distraught (very natural). Yes hubby and I were older than yourselves and also had kids (hardest conversation we have ever had with them) but I felt cheated that we would not grow older together and after his years of hard work he would probably have to 'medically retire'.

We coped eventually in our individual ways (he withdrew into himself once he stopped working and I talked here on the forum to try and understand both him and myself).  It was a day to day coping mechanism that lasted nearly three years (he died in January 2015) and we were often told by his consultant/support team (to both of us) to 'get his affairs in order'.  Like  you say each time we did something it always felt like the possible last time but in fact it was also a case of making special memories and we tried to encourage hubby to do exactly what he wanted when he wanted and if we could make it happen so be it. 

As it is early days for you both since diagnosis I know I am speaking from hindsight and at the moment you need time to digest what you have been told.  There are many on this forum who have lived for many years with various cancers and if you wish to talk more during the journey you are facing it may be helpful to mention the type of cancer in the title of your thread. 

I am sorry this is such a long ramble but I still find this forum offers incredible support and understanding during such difficult times and is here to listen 24/7 if you need to offload.  My hubby chose not to talk about his illness very much as this helped him to 'get on with it' but it left me feeling very isolated and I certainly understand that feeling of 'bereavement before actual death'.  Blocking it all out was not an option I wanted as I felt I needed some sort of control but in the end I had to follow hubby's lead and he felt he was making me cope in preparation for what I was to ultimately face but everyone's experience will be very personal to them.

Advice is difficult to give on a general level but if you feel you need support then do not be afraid to ask for it as I could not have coped without it. Take care. Jules

Hi Duck,

In a way you are already grieving, not for your husband but for the potential life together and the certainties that you feel you have lost. We all grieve in different ways - first comes shock, then denial, then negotiation and eventually acceptance. You can't rush the process, however much you may want to.

It sounds as if your husband has a great positive outlook and that he isn't at all accepting that an early death is inevitable. 

I wish you both all the luck in the World in fighting this.

Dave

Thank you all for your responses - it does help to know I'm not alone, even if only virtually.  I have avoided coming back on here because I have had some really low days - he was admitted to hospital at his last oncology appt due to low potassium levels, that was on the 20th December, and he is still there now.  The pot. levels is probably a completely isolated incident as his oncologist has said there is nothing to suggest it is a by-product of his treatment plan, but he is in a specialist oncology clinic, surrounded by palliative care patients, so not only have we been robbed of what might be our last Xmas together, but we are also getting all too real a glimpse into what our future might have in store, and to say I was not ready for that glimpse just now is an understatement.  It is absolutely terrifying.  The nurses and all the other patients are lovely, and in a way the fact that everyone in there is 'in this together' is a useful thing as you don't have to explain yourself, or hide if you are sad or frightened or angry, but on the flip side he is by far the youngest person in there, and he is also the healthiest, so it has terrified us both to think what we have in store :'( 

His cancer is adrenal cortex cariconoma - 2-3 cases each year in the UK - so there aren't any sub-forums I have found either here or on Macmillan regarding this particular cancer.  We too haven't been given a timeline - we were told that some patients only get 3 months, some may get 5 years, and one single solitary patient with our oncologist lived with it 10 years.  My husband is being hugely proactive - reading everything he can, he's moved to an entirely plant based diet, and is juicing vegetable smoothies every day, and has joined a gym.  He's always struggled with depression, worry and negative thoguhts, but somewhat strangely this diagnosis has made him a far more positive person, realising what is important in life and he has lost some of his mundane worries.  (I had read that from a few other cancer patients already.)  Whilst this should be a positive thing, and it really is, it is also a little distressing in a purely selfish way.  I was used to my grumpy old man of a husband - I didn't just tolerate the way he was, it was a part of him and I loved him for it.  This new positive version may well be new and improved, but it is just another facet of this journey that I am finding difficult to deal with - almost a constant reminder of how our lives have changed.  That sounds so selfish, it IS selfish, but when so many other things around me are changing I would just like him ,his personality, the essence of him even, not to be.  I know how awful that sounds - the positive attitude is great for him and is making him feel so much better about life, oh, I don't know.  I'm not sure what I mean.  When he got the diagnosis one of my biggest fears would be that he worried about stupid inconsequential things that really didn't matter - like he always has done.  I should be really happy that he is doing the exact opposite, and on some level I am, but some part of me just wants to rewind!  I'm not sure if that makes any sense :(  

i know how your feeling and it does get a little easier to deal with - a little - and you begin to focus on the here and now and this helps ( i say this but at times i am also in a dark place where i cant cope at all). My lovely husband is now 3 months diagnosed and he has stage 4 lung cancer and he is only 50. I love him more than life and our 2 children do too. He is inspirational in his positivity and i hope that your man and my husband reach 20 years plus togther - as this is my aim. There are supports out there and these sites and lovely people making  connections help a bit ( as people on her and other sites do understand this terribel journey we face). I am happy to stay in touch if this will help. MUch love to you both Tracey xxx

That all makes sense to me. Someone very close to me suffers badly from depression but whenever there are practical solvable problems or family crises to distract her the depression often (not always) retreats into the background. 

This may seem like a daft question but has anyone linked your husband's change of diet to his potassium levels crashing? I'm sure that I read somewhere that Vegans often struggle to get sufficient potassium in their diets. Red meat and pork are high in potassium, as are bananas and red kidney beans. Just a thought. 

All the best

Dave

Everything you say will probably ring true to those dealing with cancer in the family and sometimes just letting it pour out is helpful.  We all talk here because is helps in some small way to know you are not alone in having feelings that seem difficult to come to terms with (if we ever do).  I did, and still do, find it the best policy no to overthink the situation as had to accept (this was very hard) that nothing I said or did would change things.  Having said that I saw changes I thought I would never witness and I was lucky to have the support here which helped me understand hubby's outlook and change of character from outgoing/loving and a workaholic to more or less the complete opposite for the last two years of his journey.  I am sure it is not easy to see your husband's change of character but in time you will be able to recognise that this is his  coping mechanism and we all have to find our own (it took me a while).

Hope you will soon have him home and that the medical team can make any necessary adjustments to his medication/diet to assist him. Take care.  Jules

Thanks Dave.  We've considered it ourselves, but it is unlikely - he has already been a veggie for 3 years.  I was gradually moving towards a vegan diet, but he was opposed to doing it full time, but was happy to join me in being about 50% vegan, then when we got the diagnosis he bought a book written by an American chap who has this exact cancer and has survived 11 years.  One of the things he did was to change his diet to vegetarian, so my husband just did a bit more research into the health benefits of a plant based diet and decided it was the way forward.  We have an excellent and varied diet which is legume heavy and they are mostly excellent sources of potassium, so we don't think it is that, but everyone is at a loss as to what it might be.  

Thank you Jules/ Tracey.  Whilst I feel your pain it is comforting to know that I am not the only person in the world to feel like this.  My step mum lost her first husband to lung cancer aged just 40, but I was just a youngster at the time and we have never really spoken about her loss.  She is tryng to be very supportive to me now, but I just feel like that will rake over so many horrible and painful memories that I am trying to keep her at arms length from my worries.  

Hi! Have u ever talked about his cancer and death with him? I have leukaemia and I'm trying to act as positive as possible so people don't feel down even tho its not really working maybe he's acting this way so YOU won't feel the way ur feeling rn

As for you, I'm not in the same situation as you but I think it's pretty normal y'know. But if I was you I would try to talk about it with him before its too late. It does take off a huge weight of the patient's shoulders

I hope it helped you!

jennie xox ~fighting!~

I am absolutely in a similar situation except for the fact that me and my boyfriend aren't even 30 yet. Although nobody has ever done what we're hoping for him, there has to be a first time for everything right!? For us a large part of living in the every day and not just thinking about the negative all the time is the 'complimentary medicines' he takes. I believe 100% in the nhs but also believe there are other things out there. We try to take control of his cancer as much as we can. No processed foods (to the extreme), plenty of fresh air. Anything extra we can do that might help fills us with the hope we need to carry on. I hope you guys can find this.xxxx