Life after discharge - not so easy.

Good afternoon Dave 46, the moment that the safety blanket is taken away and you are left adrift in the sea of the living again, can for some be as hard as the diagnosis and treatment its self.

We have been on rather different cancer journeys so I can not make any informed comment about the mental challenges round your treatment. My cancer journey started back in 1999 and I have to say that for the first 14-15 years i looked at it as living with a chronic condition..... then it all went wrong and I was taken to the threshold of deaths door, not that this was a problem, but it did waken me up to being given a second chance to 'live as full a life as I can'

Even although the treatment journey over the past 5 - 6 years was full on I must admit that I did control the mental battle very well. The post 'main' treatment journey has been long and full of medical challenges but we dealt with it.

A few summers back I did go down the "why did I survive?" rabbit trail when two close friends died of their type of cancer but was able to work this out with trusted friends and by attending our local Maggie’s Centre on their very good 7 afternoon 'Where Now?' course.

So can't give you answers, more an appreciation of where you are at. When I was discharged last June after being in treatment for a good 19 years it came as a surprise, even my Macmillan Specialist Nurse was taken aback. But I have to say that it has been very releasing as I am not continually thinking about that 'next' appointment or Scan and if it was not for coming onto help on this Community I would find the memories would be getting fuzzy at the edges.

Eventually the penny dropped that I was 'out' of the past 20 years tunnel with a new beginning. Yes, I am left with a very dysfunctional immune system that will put me in hospital at times, but worth putting up with.

This great paper tends to be posted in this forum a lot, it may not be what you are looking for but is worth a cup of coffee and a look.

Sorry, this was a touch of a post lunch ramble, but keep posting and I am sure that others will be along to give their prospective.

Take care and keep on.

Hi Dave,

I’ve been thinking about your post since I saw it this afternoon. I’ve been trying to think what I could say to you. And I’ve decided that there’s not much I can say, because I can’t jump into your head and live your experience. And that’s perhaps an important thing - the way forward is going to come from inside you.

All I can offer is my experience of issues linked to PTSD and what helped me. I would say two things:

Short term - distraction - I’ve not found a better tool than this - getting immersed in something else, something you enjoy, something that will take you away from the bad memories in the quickest way possible. The brain is a muscle, it needs to be trained like any other. Consistent and regular distraction on something you find enjoyable will teach it to focus on whatever the distraction is, until the distraction crowds out the other thoughts, and you’ll begin to not need the forced distraction so much. For me, it is the act of doing something so there is no space for the brain to think.

Long term (and much, much harder) - acceptance - this is the life you are living, your experiences are your experiences, they make you who you are - the memories are what they are, but they don’t define you or your future. The past can’t be changed, it’s an important part of who you are, what got you to this point, but it isn’t your future - that is unknown, and there is much joy still to come. Even in the smallest things.

I’m always hesitant to post this stuff - please feel free to completely ignore it and I hope it doesn’t make you angry or feel worse in any way. It’s just my experience of dealing with some things linked to PTSD.

Greg

Thanks Gents, I get all you say and dont get me wrong i am doing so much positive stuff in my life  - new experiences and new places are all good for the soul and i agree things are so much better then. But its like at work - i get so distracted by what happened. Today woke at 5am  - bam cancer thoughts and flashbacks. Filling my mind so full nothing else would enter. My thoughts on this is that the triggers are so all around me - i only have to get up for a pee and i can see i have no penis - i cant escape them. I carry the triggers on my body.  i can use avoidance for some triggers - but peeing is a tricky one.  i love my hobbies but i still find the thoughts are there taking the enjoyments away to some degree. 

i also wonder with so much talk of our mental health if i am not thinking about mine too much - if that makes sense. Trying to put pressure on myself to park the past and let it bother me less  - is actually doing the opposite. I guess in effect this could indicate when people talk about and promote mental health that thats just another trigger for me to question mine. 

And Greg - defo not angry. 

Hi Dave, yes, being given a White Chocolate Magnum that transports me mentally back to my long weeks in my isolation room does not stack up against your mental trigger...... no words can express my thoughts on that one. I would think that females going through the various types of woman cancers go through the same mental challanges.

Your interesting observations about the big focus on mental health has merit. In my other life away from this Macmillan Community (I do have one) I come in contact with lots of folks who are going through the mental health rollercoaster. Some are struggling and I/we do our best to support them and and ensure that they access any professional support that is available, but that is few and far between.

But I have to say that for some..... they may well be 'using it' as its in the press and online....... I hope that this does not come across wrong. Its like some of the cancer charity adverts going around..... '1 in 2 will develop cancer in their life time'......... 'brave the shave'......do they help or make folks paranoid about developing cancer?. Well both actually, there is a very fine line that is walked and some of the folks I/we deal with will admit that what they are 'feed' day in day out propagates some of the mental challenges.

Sorry, no answers for you, but it may be good for you just to talk and not have to look people in the eye.

Hi Dave,

The physical reminders must be incredibly difficult. I can’t give you any insight into how you go about accepting what has specifically happened to you. I have some physical reminders myself and acceptance has taken a very long time (and it’s not a permanent state anyway, some days I am more accepting than others). The question I ask myself is what I can do about it? If the answer is nothing, then it is what it is. As brutal as it sounds, this is now my experience of life and I can still find joy in it, no matter if it is different to the joy I used to experience. 

Your point about whether talking about mental health problems exacerbates them is an interesting one. I am a Libra, so I believe in balance. I believe at any one point in time, the human brain is in one of three states - distraction, denial, depression. Each of them is as important as the other and they should be balanced (ie, you shouldn’t be in one zone for too long and it’s natural for them to fluctuate.) And i’ll add that by depression, I really mean self-analysis, self-awareness rather than the crippling mental illness. I just use depression as a lazy way to make it 3 Ds.

So distraction is important - the brain needs to not over-think, it needs to have fun, do human things, basically live. We are organisms and we need to do the things that we are wired to do without over-thinking what we’re doing. Too much of it though is bad and could lead to being selfish and uncaring. It could lead to regret later in life.

Denial is important - this is our belief system - what gives us a purpose - what we believe is the reason we are doing what we’re doing right now. This provides rationality and confidence to live the life we want to live. Too much of it though leads to over-confidence and a closed mind, which could lead to harm to the self or others.

Depression - for me, this is the self-awareness of just how small and insignificant we all are. We are basically parasites trying to survive on a small speck in a small solar system in a jet black infinite spread of nothingness (based on currently available information) - this is the big picture - it helps to ground us when we’ve lost our way with too much distraction and denial. Too much of this mindset though leads to forgetting that there is much joy to be experienced in just being.

So I think your note on whether talking about mental health is a good thing or not probably depends on where you’re at in the balance of the above. If you’ve had too much distraction and denial and are experiencing depression for the first time, then I think it’s good to talk about mental health because it’s an unsettling but important part of the psyche, and people need support to help make sure it doesn’t take over. If the depressive state is already strong, then I’d tend to agree talking about it more will probably not help - what that person needs is distraction (occupying the brain on other stuff) or denial (something to believe in that gives us purpose and rationality).

The above works for me. It is effectively my denial. Your answer will be unique to you - it will be in there somewhere. I’m confident everyone has the answer inside them.

Sorry, I’ve gone off on one again. I just thought I would pass on my experience of how I’ve dealt with things. I’m really sorry if it is wide of the mark.

Greg

Thanks Again Gents for your perspective on things. I think probably a little bit of everything has grouped together to form a perfect storm in my mind. There has been so much about PTSD/ Mental Health / Cancer Awareness in the media recently that I think this has got the better of me. If I add in other bits and bobs that have been happening in my life then it all makes sense.

I do indeed look to sky and ask what is it all about, did it this morning infact when I got up! My body is changed and physically more uncomfortable than it used to be BC. But I am very aware it will not change – I explored the possibility of reconstruction but at the end of the day it was my decision not to go down this route , so I am fairly at peace with this. I am very aware that things could very easily turned out differently and that’s quite a weight to carry.

What I am getting from this exchange is that this may be a fairly unique set of circumstances but my minds reaction seems quite normal – I just need to train it not to react so aggressively and take a step back to understand the processes at work and to work with them not against them.

This I am sure is a temporary place I find myself and I will evolve and learn even more from it and I hope once I get everything in order the flashbacks and trauma memories will subside .