Hi

Wanted to welcome you to the forum though none of us would choose to be here of course.  Your story is one many of us will recognise.  The worrying, the fear and overall the frustration that its all beyond your control.  I am sorry you found out the way you did and its never easing masking the feelings it brings with knowing.  I can speak from some experience here as it was my husband who was diagnosed with cancer of the lung linings (mesothelioma) and we chose to wait until we had all the facts (investigations took nearly four months before we knew exactly what we were facing and how any treatment would proceed) beefore calling the inevitable family meeting with our two children (then 27 and 30).  From a parents' point of view it was the hardest thing we had ever faced and we all cried together as we tried to come to terms with it all.  It felt like nothing would be normal ever again (we had been married over 35 years then) but my husband was insistent that he did not wish to talk about it with us and that it was important for him that we continued to live 'normally' for as long as was possible.  This was a very hard part of the journey , ibut we honoured his wishes the best we could and continued to plan for the future as, in effect, no one knows what the future brings.  I suppose what I am trying to say is that do not be afraid to share your feelings when the time is right but your Mum and Dad will get great pleasure still in seeing how well you are doing in your life and knowing that you can still share and support them when  you need to will mean a lot.  Both my Dad (who I lost some 7 years ago) and my husband (just 2 months ago) made it very evident that those loved ones left behind  should 'live their own lives' but life is not always an easy road and its best, from my view, to take small steps on a day to day basis.   I wish you all the very best and hope you may visit the forum again and 'offload' any time you need to. In any event it was brave of you to share your story so openly - many here will understand totally where you are coming from just now. Regards  Jules54

Many thanks.

Barely got 4hours sleep last night.  Had dinner this afternoon with the four of us, and I couldn't help but catch another look at him before I sat down.  When we'd finished he said he'll go do the washing up now, before mum whispered to my and my brother if we could go in the sitting room for a chat.  I knew what was coming.

Mum came in already teary eyed.  The cancer is tied in with his lymph nodes, they can't operate.  He either does nothing, which hardly seems an option given how bad his cough is now.  Or he has treatment which she said could be nasty also??  They going again on Thursday do discuss options.

I sat in silence barely able to muster any words.  She hugged my brother, and then me at which point I couldn't hold it in any longer, I cried in my mums arms for the first time in decades.  So much for being brave.

I feel like it's confirmed that my dad won't be here by the end of the year.  Absolutely devasted!

Hi again

Its best that its all out in the open and that you do not have to hide those feelings but devastating for you all. Its sounds as though your Dad may be offered chemotherapy and/or radiotherapy to try and slow the cancer growth down (my husband had chemotherapy which in itself was a harsh treatment but he chose that route to try to give him longer and it probably did). I am sure you will all be supporting each other and somehow we all do find the energy to cope but any time you feel like 'writing it down' (it helped me to release my emotions) and have a 'virtual scream' go ahead and do it. I am sure your Mum will keep you informed (I was the go between for my husband when he could not talk about it as he found it all too emotional) and its good that you can bring comfort to each other at such times. The day by day coping worked in some small way but remember to look after yourself too as this will in turn be of help to your brother and parents.  Not sure how old you and your brother are but its hard at any age to face losing a parent so if you need to talk person to person rather than virtually on the forum then the nurses are available mon to fri 9-5 (number on the site and is free from most UK landlines and some mobiles) and they may be able to help you understand any of the treatment that is offered. Jules

Hi Stevie,

In a way one of the worst parts is over for you - everyone in your family is now aware of the situation and you are through the initial shock and the waiting for a diagnosis. 

Give your mind some time to come to terms with the news and do whatever you can to help your parents in practical ways. Meanwhile try to find out exactly what the oncologist has told your parents about the diagnosis, staging, grading, available treatments and, hard though it is, likely outcomes. 

You will worry, that much is inevitable, but having access to accurate information will help to reduce the fear of the unknown. 

Your local MacMillan team will be able to advise on practical things such as ensuring your parents have access to the right services (e.g. MacMillan nurses, district nurses etc) and any benefits your parents are entitled to such as PIP which opens up free prescriptions and other benefits, local support groups and perhaps counselling for family members as well as for your Dad. 

You are all on a very difficult path, but it is one which many of us have been down, so please don't hesitate to ask any questions at all.

Best wishes

Dave

Hi Stevie

The waiting for all the facts is not easy but you are have a strong family and there for each other and you will all find your own ways of coming to terms, eventually, of what is going to be happening.  No one will deny that its a very scary time and it takes a while to get your head round it all.  Dave has given great advice in that the practical things like sorting out the help your Dad may be entitled to and you are not that far away if needed (though at the moment it feels that you are I am sure). With more knowledge comes better understanding of what is happening but if you are using the internet for information do make sure you only use well recognised sites.

Listen to your Dad's great advice and keep working (I managed to do this as its what my husband wanted).  Though maybe difficult at times it is more helpful to be busy and if an when your Mum may require help in the home you may be entitled to leave. My husband preferred to have the non-emotional  help of district nurse care and in our case this proved to be fantastic support for us both. If you can hopefully you have at least one person whom you work with that you can confide in as again it helps for them to be aware of what you are going through just now. Go for the day to day approach and draw some strength from friends and family (I never thought I would cope with the devastating situation either but taking all support from friends and family and the professionals helped us through). Jules

Thought I'd give it a day or so before posting again, but have to say I'm still really struggling to come to terms with it all.  I've been dreading this phase of my life for many many years, and the thought that I may only have this year left or less is too much.  I can't imagine going through the other half of this year without dad there, dreading christmas which always comes way too early.  Truely scared of that moment when I can no longer talk to him, or see him no matter how much I want to.

I've tried to live normally, still going to work each day, but it's such a struggle to concentrate.  Without doubt the toughest thing I am having to endure by miles.  I don't really want to contact home and worry them about how upset I've been since Sunday.  I knew it would be hard, but not like this, and this is just the beginning, haven't even gone through his options for treatment yet.

Morning Stevie

I really do not think that your Mum and Dad would be at all surprised at how upset/fearful and worried you are feeling as I am sure as a close family you will all be aware of these emotions. Have you spoken to your older brother since the weekend or have you a close friend you could chat things through with or even talk about your day when you get home.

  Its a fact that we all have to face death in the family at some point and with my own Dad we had about three months to get used to the idea.  During that time he wanted little intervention and though it was hard to put my own thoughts to one side,Mum and he supported each other and I visited as and when I could, usually fortnightly because this was the 'norm'. I was an only child so  did feel  stunned that it was going to happen but also wanted to keep him stable for as long as was possible (my Dad refused treatment when it was offered) and so I followed my parents' lead , asked them to let me know when they needed extra help and kept my own life as normal as possible on a day to day basis (even only phoning home on a once a week basis because this is how it had always been and they hated their routine to change).Everybody's characters are different and until your Dad has his next appointment the way forward will be somewhat uncertain. May here will say the waiting to know the full story is the hardest time of all. In the meantime if you feel you need professional help to help you to cope then contact yoru GP sooner rather than later as sometimes counselling takes a little while to set up.  Certainly do not worry how often you post on the forum, thats why its such a good place to be as you can write your feelings down and no one passes judgement on how you feel .  No easy answers I know and sorry for the rambling but if you 'share' the journey on the forum you may feel less alone - my virtual friends on my thread really kept me company (and still are) and there can never be enough thanks as day to day it became my 'reassurance' that I could only do my best and learn to listen to what my loved one needed  rather than trying to second guess what was going on..

Please take care of yourself and just post when you need to. Regards Jules  

Just reading back what I wrote some 10 months ago now.  Worried about him not being here in the next few weeks, months, planning to quit my job the day after finding out, etc.  But I was told to be brave and carry on.

In the following months, it was incredibly painful listening to his coughing, particularly at night while in bed.  It clearly irritated him, horrible to hear him suffer.  But he went through the radiotherapy, and begun the process of being drained every now and again until the end of July when the drain was removed.  Things, although scary, were quite normal, and he still remained quite active and his normal self, although the more physical stuff came to us.  My worries about my birthday, fathers day, summer were unnecessary.

The chemo started and the cough was definitely on its way out, a positive after all the worry.  In fact we learned that the lung cancer has almost completely gone.

Halfway through chemo his balance was beginning to fail, and by November he had almost lost all mobility.    It was again a difficult time particularly, for him, to have furniture arranged around him.  The look on his face having struggled to shift himself from bed to wheelchair when he saw me in front was of complete defeat, just heartbreaking.  By now we had learned that he now had brain cancer.  Even mums strength was starting to falter, and one weekend both fell into tears when I asked how are things, first time since the original diagnosis in March.  He had radiotherapy, and was then put on steroids, which made him very depressed.  He was also becoming very forgetful, and unsure of his surroundings, and what was going on.

Everyone was determined to make the best of christmas, and we did so in the same way as we always do, same traditions.  It was truely awful wrapping his xmas present, thinking in the back of my mind it could be his last.  By now he was bald and very slow mentally, but we celebrated as normal.  He sat with us at the table.  I really didn't think he was going to make it for christmas, and was dreading spending it just the three of us, but we all made it.

Since the new year, he began to spend all his time in bed, losing his appetite for food and drink.  He didn't sit with us at the table which I struggled with, thinking is this the future now, as he'd be sat next to me to my right every dinner time.  It was very upsetting going home for several times now, as things seemed to worsen each visit.  The lack of drinking meant he had some kind of infection we believe and took a course of antibiotics.

Last Wednesday we had a real scare and I drove half the M25 to be with what I thought would be a dying dad.  Fortunately by the time I'd got there he perked up, he was talkative, the anti-depressants wore working perhaps, and next day he actually started asking for a drink.  It was positive, 10 months later and he is still here, and I still have my job.  With that I was going my home yesterday but he had a fall trying to go to the toilet, and it felt like a good 10 minutes to get him on the bed again, so I stayed another night.

Early hours of this morning I woke up to mum talking in the other room, I thought I could hear wake up, my chest went cold before she called me in.  I took one look at him, and saw something familar to what I'd seen before minutes before someone passed away, and I knew straight away this was going to be it.  Out of no where, after a relatively positive day, he took his last breathes and was gone.

Once the emergency services had finished their paperwork, I stayed with him, most of the time with one arm around him as long as I could knowing this was the last time I'd be with him or see him in person, dreading the arrival of the people that take him away.  The door bell rang, and I broke, I hugged him, and thanked him for everything and sat back down. As mum asked if I was ready, I said no, walked back around the bed and gave him a final longer hug before taking myself away to another room.

Looking back I am grateful I got given another 10 months when I was thinking it would be weeks or just a couple of months.  Most of those 10 months were 'normal', maybe at least 8 of them.  I know some get longer, some beat it, and unfortunately some have an early loss.  We knew that it was likely to spread and so, although we maybe hoped, we knew wouldn't end up in the 'beat it' category.  But I guess its important simply to not give up and make the best of things because things do change, you can have a 'normal' life during the battle.

Today has been very surreal, obviously cried a lot, not only has he had such an incredible impact on my life, we are identical, our interests, hobbies, mannerisms, the way we think/feel/react.  So this was always going to be my biggest fear, and my biggest battle.  I'm a very private person, but still talked a lot with mum about things, what we need to do, what we'll miss, how we was feeling and thinking during the whole battle.  We went on to prepare ourselves for the fact that we will find things around the house that he has left behind, simple things like a hat and gloves or some cable he fitted, or having to cancel him off their joint insurance policy.  It hurts just as much seeing her hurting after nearly 50 years together, crying to me the words "what am I going to do now".  In a way it's a relief just to be completely open and let it all out, particarly after 'being brave' for so long.  This is all part of what is now our mourning process.

My mind wandered in all directions not being able to make sense of what is going on, one minute thinking how much I want to talk to him, feelings of great loss, and strangely the next minute feeling like he is still in the other room or elsewhere in the house, that'll he be back soon, completely forgetting the events of this morning.  I was told things get better eventually, I will learn to adjust, which is incredibly hard believe right now.  Sometimes I try and remember what was the last thing I said, or he said, and could I have said something better, should I have been with him more at certain times, but then I decided it's no use thinking about that, what's done is done and you'll just tie yourself up in knots.  Instead I force myself to keep thinking about the happier moments, still very painful, but hopefully it will eventually drain out the not so nice parts.

I feel like my life is in two parts, and I now find myself suddenly and all too early in part two, the part I've been dreading all my life, the part without dad.  It pains me so much that I cant go back to what it was before, and I so badly want to talk to him, have another hour.  I really can't believe he has actually gone.  I try to stop thinking about it altogether, but I guess it's easier just to let things run naturally, and try to believe that things will get better.

Earlier today the vicar arrived, I have long been a non-believer and don't involve myself in any religous stuff.  But I did overhear something about a funeral that hit home when he said it.  It isn't merely about the end of someone in your life, but a celebration of who they were and what they did in your life.

So as much as it hurts so badly, and the same thing goes through my head "Can't believe he's gone" "I want him back", "I miss him so much", when my mind is set to thinking about him, I'm going to do my best to try and think of the all the best bits about him, and let nature take its course.  No doubt I will have to go back on anti-depressants, but I must carry on.  Here goes the really tough bit...

Stevie,

Thanks for sharing your story - your Dad couldn't have asked for any more and he must have been very proud of you. I'm sorry to hear about your Dad. I hope you get through the funeral OK and that you manage somehow to make it a celebration of his life. 

Best wishes
Dave