How are you on no treatment?

Hi

I am sorry you’ve been feeling so low. I do hope that naming what you’re going through offers a way to see past those black clouds. There’s a blue sky above them. 

I recognise the feelings you describe. I’m on treatment now but I remember back in 2016 when I was told I was incurable and my consultant at the time said the only thing she could offer was palliative chemotherapy. I entered a long period of grieving like you say - for the grandmother I’ll never be, the university graduations I won’t attend, for the weddings I’ll never get to. I was angry as well as sad. 

I found support here in this community and with counselling but more so through meditation. I learned how to notice my emotions and the physical feelings in my body and to investigate them with curiosity rather than judgement. I realised that although the anger and sadness and fear were very strong, they were not the only things I felt. Once I’d started to show a real interest in my feelings I found there was joy there too and love and delight and gratitude. They were just a bit swamped. I learned how to uncouple the anxious thoughts from the anxious sensations in my body and stop the feedback loop between the two. All that for 15 minutes a day. It is not a magic wand and it’s not instant. It takes discipline. But for me, meditation has been a powerful tool. 

It may well be that you are depressed and I wouldn’t be surprised. The problem with depression is that it makes it impossible to do things that might help lift you out of it. Anti depressants can give you the space and lift your mood just enough to let you do the things that can help. 

I hope this is helpful. 

Lots of love 

xxx

Hi M-j,

I hope you don’t mind me contributing to your thread even though I am not in the same position as you. It’s just your post resonated with me and I just wanted to say that I have definitely felt grief for a lost future. I had never really considered that you could grieve before death but actually I think it is a thing and in a cancer situation, I think it can actually happen quite a lot.

If I recall correctly, there are 5 stages to it, with the last one being acceptance. I think it can take a long time to get through and is not necessarily a permanent state, but as Daloni says, now that you have a sense of what you might be experiencing, I hope it gives you a path to managing the depressive thoughts you have been having.

In case it helps, I have been developing a theory in my mind about D-D-Death and that there are 3 ways that humans deal with it, distraction, denial and depression, split into two subsets - conscious and unconscious, as follows:

Distraction - conscious - it’s when the depressive thoughts get too much, this is a conscious decision to distract yourself from those thoughts (doing something you enjoy, meditation, anything basically to get you out of the bad thought)

Distraction - unconscious - it’s what conscious distraction develops into over time - I reckon it’s the state that most human beings are in for most of their lives - it is the state of being distracted from death by everyday things - work, family, hobbies, etc without thinking about death

Denial - conscious - a bit more controversial this one so apologies in advance - this is about whatever we as humans decide is important to deny the inevitabilities around death - belief systems would fall into this bracket for me

Denial - unconscious - this is that unconscious feeling that death only happens to other people - it’s how we can watch the news and not burst into tears. I also see it as desensitization to death.

Depression - conscious - this is the thinking (too much) about death and the inherent pointlessness of human existence such that it brings on depression

Depression - unconscious - this is the general feeling that something is not quite right in your life, but you’re not sure what.

The theory I am working on is that as humans in our relationship with D-D-Death we oscillate between these groups at different points in our life, sometimes even within the same day.

I definitely don’t pretend that this is in any way fact and I fully appreciate that I have so much more to learn, but I was hoping it might help with your current mental state? Basically, whenever I am feeling conscious depression, I try to pull myself to conscious distraction or less often conscious denial. Over time, I then find the conscious thoughts transfer into unconscious ones, until the cycle starts again at some point in the future.

Once again, apologies if this is wide of the mark and not helpful at all, I just saw you post and wanted to add how I have thought about it.

All the best

Greg

Hi greg777

very interesting. I feel it needs a good long session at the pub to dissect this fully. 

Xx

Hi ,

When I was told that my kidney cancer had spread I was told by my urologist that it was terminal.  I spent the next few weeks bursting into tears and that was definitely grief not depression.  I made the classic mistake of looking up survival rates and found that 95% of people with advanced kidney cancer died within 18 months I was losing all that I had hoped for in my future including being there for my wife and more especially my son who was aged 9 at the time. 

When I saw my oncologist he advised me that there were now treatments available and that these could not cure me but could extend my life.  It was about 18 months later that he learned the urologist had told me I was terminal and he was very upset with him.  He clarified that I was incurable but would only become terminal when there were no more treatment options available.

I am now over four years on and many more treatments have been developed and licenced within that period but my few weeks with a terminal diagnosis has had a lasting effect.  I am much more emotional and tearful than I used to be, I cried all the way through the funeral of a family friend but one who was much older than me and who I was not that close to but it was about my own relationship with death rather than his.  I will cry at movies which never bothered me before and I will struggle to talk about certain things without choking up.

Although I have down moments it is definitely not depression but I am much more aware of death as the ending of the hopes, goals, responsibilities and ambitions of an individual and it makes me think about my death and triggers a response.

As Greg mentioned there are stages of grief but people do not progress through them in a linear way so other than recognising that they are there I don't know if they are much practical use for how you progressing.  I'm also not sure how you do get through them when you are grieving about a future event?  I realise that my case is significantly different as I am one of the people who are still receiving treatment and my hopes for how long I might live increase with each new development.  On a practical level I need to behave on a day to day level as if I am going to live for at least a year so that I can plan for things as otherwise I would end up doing nothing and then I think I would be more likely to become depressed.  I suppose that this would fit with Greg's idea of being in denial.  I would not dispute this but it is balanced with having ensured that things are in place for my family after I have died.

It sounds like the counselling is working well for you and I think in it's own way it is similar to Daloni's meditation.  A good counsellor enables you to answer your own questions and meditation is often used in a similar way, putting someone into a state of mind where they can focus better upon themselves and why they are doing what they do.  I used to write myself a series of questions about what was concerning me and as I answered each question it would inevitably generate another question and I would try to "drill down" until I reached a conclusion about why I acted as I did and if it was something about myself that I needed or wanted to change.  There are lots of ways for reaching the same place and some suit you more than others.

I'm not sure if any of this would count as coping strategies relevant for you but hope that you can find something that is of use for you.

All the best,

Gragon x

Dear Daloni, Greg and Gragon thank you so much for your informative responses they are most appreciated. I agree with Daloni your ideas Gregg would be interesting to share further and it is a shame the York meet up it is too far away from Kent as a pub setting would be grand.

You have all made me feel 'it is not just me' which really helps and whilst not at the same stage as me you can all relate to these depressive feelings of grief. They come out of nowhere and nothing prepares you for them. If only consultants and oncologists when telling their patients the progression of their disease is now incurable/terminal they could warn their patients that their mental health will be seriously affected and counselling automatically offered. You hear too often of patients just being left to deal with this devastating prognosis on their own with little or no support.

I have found all your coping strategies very helpful and will give them a try as it is so frustrating having to contend with depression and grief at a time when ideally l want to enjoy each day l have left. Thanks again xx