Moving on

Hello youngman. I have much the same as you but have a lot more bone mets. I was diagnosed nearly three years ago when I was told I would have 8 months to a year to live. I immediately gave up work, sold my beloved Merc and bought my wife a new car so she would have no worries for a few years. Then I sorted out my pension and started to worry, all day every day.

But eventually you realise you are slowly getting used to your changed life. It will happen, I assure you.

Here I am still worrying but getting on with things. This forum has helped incredibly. People have some big old problems but they always have time for the next person who signs up. We both could have years, I used to get fed up with people telling me that but it's true. 

Put metastatic prostate cancer in the search box and you will find some chaps on that who can give you some support. Good luck.

Hello YoungMan

I am sorry that you find yourself here. This forum is so important and helpful, I hope you find it a source of comfort. We all cope in different ways I expect. It's ok to not be ok.

Take care, x

Hi YoungMan

Welcome to the club no one wants to join. I am sorry you’re eligible but I’m glad you found us and I hope you will be too. 

Two things strike me as I read your post. Struggling to live with cancer and feeling a fake. I think it’s fair to say everyone (or nearly everyone) here has felt both of those. I know I have.

I was told I had incurable womb cancer four years ago. I spent far too long feeling as though I was dying of cancer before I learned to live with it. I think it’s natural and a quite normal process. It was like a bereavement and I had to grieve for the life I thought I’d have before learning to accept this new one. It’s actually a pretty good life. I have friends and family around me. I live in a beautiful place. I am still mobile even though I have challenges. I live in an era of evolving cancer treatments and decent pain killers. I have the NHS. I could go on. And on. And on...

Some of the things that helped me were counselling, meditation, doing the death admin (wills, power of attorney, claiming on the mortgage life insurance etc), keeping busy and being here in this community. 

Part of the trick is not to spend too much time thinking about the future. It’s a waste of time when there’s today to enjoy. No one can take tomorrow for granted, much less next year, it’s just that this becomes so much more obvious when you have been told you have incurable cancer. Why not turn that into a virtue and really focus on the here and now? Enjoy each day in your new car now rather than worrying about not enjoying it in some imagined tomorrow? 

Does it sound simple? I think it is but I’d be the first to admit I didn’t find it easy. It took time and a lot of work to change the way I thought. 

Try not to beat yourself up about your feelings. You’re not a fake and struggling with living is normal. Do things that make you happy, be with people who make you happy. 

I hope this is helpful. Don’t be a stranger 

xx

Welcome YoungMan 

One of the advantages of the forum is that you can be a fly on the wall and have access to several groups until you find the ones that are most helpful.

I find one of the advantages of this particular group is the number of times someone else puts into words something I've been feeling, for example feeling like a fraud in the beginning.

hit the nail on the head for me when she talked about gradually making the transition from the feeling of dying of cancer to learning to live with cancer.

I also found addressing practicalities such as an up to date will, advanced care plan and funeral plan helpful as my initial prognosis was poor. After successful gamma knife surgery be told I was 'stable' with widespread metastatic cancer was another big adjustment. 

There's grieving process, a shift in relationships and friendships and a new normal, much like a bereavement.

I'm a former nurse and worked in a cancer hospital during my training in the early 80's. People either died fairly quickly or they got better. Living with cancer for sometimes many years with relatively good health and quality of life is a fairly recent development.

My son says he now thinks of it more like a chronic illness, and many chronic illnesses are invisible. There are no shortcuts but the feeling of having a constant threat hanging over you does improve, everyone gets there in their own way.

xx

YoungMan you are certainly not a fraud. It takes time to come to terms with the news that you have incurable cancer, as I know. This forum is invaluable to me because we can be honest with each other. I only ever really talk about the possibility (probability if I’m honest) of me dying of this with my husband and that’s to help him make plans for his future. I never discuss it with friends because in case they wonder why I’m sticking around for so long. 

things have changed even since the 1990s when I was first diagnosed. I thought  I’d either be cured or be carried off quite quickly. I never imagined I’d end up in this sort of chronic state, but many of us are. We still need TLC from time to time and who better to give it than people in the same leaky boat. 

Hello again YoungMan. I hope you are pleased that you decided to post on this forum after reading your replies? It is like a huge councelling room here with the nicest, kindest people who want to share their experiences and sincerely hope they can help with your daily and future living. Rereading your post is pretty well a picture image of what I was like. I never believed my life could be anything like normal but you do adapt and start to look at things differently.

Above is something called the Kubler-Ross Change curve and shows the stages we go through when something drastically changes (I use it in my work). We may work our way through the cycle, or go backwards and forwards between stages, but I am sure most people on here will relate to this. Bottom line is it is ok to have these feelings, it's just sometimes those around us do not understand what our emotional journey is like

Hi YoungMan

When I was given my diagnosis I was in a hurry to get things in place for my husband and son and my elderly mum who has dementia.  I moved house to a modern one hence less maintenance issues, Went on a cruise as it’s what all of us wanted to do at some point in the future, we bought a new car, again to avoid any maintenance issues.  All of this to make things easier if I am not here.  18 months down the line I am still alive and kicking and feeling quite well. We have been on another holiday since.

I am not being flippant because I think the enormity of it all comes and goes.  In fact recently I stopped buying new clothes when I was told of scan results and a further spread.  But it didn’t take long to deal with that and move on so I have just bought myself a new coat and dress in a sale.  I am now coming to terms with losing my hair from this most recent treatment I am on so when I feel up for it I will head out with my new clothes and my new wig and have some fun.

I agree with the wonderful comments on this forum, I value and read every day,  I think it is best to live for today the best you can,  roll with the punches and try to do what makes you happy.

Hi and YoungMan I was diagnosed in March 2015 with a blood cancer, MDS but I didn't leave work until January 2016. I had to because  I developed a spinal problem, spinal stenosis, and I wasn't able to walk without severe pain, indeed I was advised that a wheelchair would be my best method of getting around. 

The MDS is an incurable cancer and the consultant said he couldn't give me any prognosis because he said that "different people go down at different rates". My wife and I had a cruise in the Norwegian Fjords, short breaks in London, Paris (back with an expensive Tissot watch each), Iceland and New York. We booked for Sports Personality of the Year show and I replaced our old washing machine, double oven, freezer and microwave because of sticking plaster repairs and ageing. 

Yet I'm still here, I've been neutropenic a couple of times in the last 6 months so I thought maybe my number is up soon. I'm guessing that Murphy's law would have had me dead if I hadn't spent that money!  Isn't life strange?

Tvman x

Hi YoungMan a d welcome to this amazing Group, sorry I'm a bit late in replying but I've been on holiday the last 3 weeks!

There's a lot of what I would have said, that's already been said! As usual, Daloni is spot on with how things feel at the beginning of the diagnosis and the things that change gradually as time goes on. Once you pass your "expected sell by date" you start to realise that the doctors really can't predict when you will die. However the way I describe it is like being on a rollercoaster. At the start you feel you are up at the top as high as it goes and the only way is down because you can't get off! Then with lots of us, a miracle happens and the trial drug (or new treatment) starts to work and the rollercoaster slows down a bit and things seem a bit better. Not wanting to take any chances, you put your affairs in order, POA for both finances and health, to make things easier for your family. When people who know your dx meet you they tell you how well you are looking, but although you don't always feel it, you smile anyway. Others can't handle it and fall off the radar, that's normal. It's not your fault if they can't handle it but you don't have that choice. You are reluctant for the first while to book even a short break, let alone a holiday but as time passes, your attitude does too. I believe in living each day as it comes and make it as good as it possibly can be.

The good (if there is such a thing) thing is, you make sure you tell the people you love, you love them and when you eventually do die (& that's one thing we will all do) is you will have no regrets and neither will the people you care about because you will make sure nothing goes unsaid. People who have not had an incurable dx very seldom do this because they always think they have a long time left to live. 

   I wonder if that makes any sense to you? It is not easy but things will settle in time! I read your profile and you sound like a down to earth guy who will get through this somehow as we all do. I do hope being a part of this elite group, helps with all the questions you have and makes things a bit clearer for you! The thing about this group is once you join it, you will never feel alone as there is always someone who gets it, to talk to.