Tag Archives: recovery

Chaotic Cancer: A Family Member’s View: Prognosis

Please be aware that some of the content may be triggering. Please take care πŸ’š

This is my view as a family member of someone who has been diagnosed with cancer, with particular relation to issues it causes to my longstanding mental illnesses.

Prognosis. What’s likely to happen? Are we looking at a time frame? Will treatment be a cure? Staging? Grading? All this suddenly comes up. Some of the things you don’t even realise until you’re in the middle of it. Like I didn’t realise there was a difference between the grading of a tumour and the stage of cancer. There is. (Grading looks at the speed and growth of the tumour, Staging looks at how much cancer there is and how much it has spread).

Prognosis was something that came into my mind straight away. I wanted to know if my mum would get better or did I have limited time with her. This was why there were many more tests required after diagnosis. We were pretty sure it had spread from a primary source to the liver and it was important to try and find the primary source. It was suspected to be in the stomach. The type of cancer my mum has (neuroendocrine) means the primary can be on one of many places and usually isn’t found until it has spread. As it was mum’s was an incidental finding during an operation.

To begin with we had a lot of confusion surrounding the prognosis. We were originally told it wasn’t curable but it was treatable. This sounded OK. Then we got the grading back and at first it was not the best outcome but a manageable one. Mum would have years. Within an hour we had another phonecall that changed that to it being more aggressive. Finally my mum asked for clarity on prognosis.

Eighteen months to two years life expectancy.

It was like a slap. We had never been led to believe this was the case at all. Mum just dissolved. Understandably. I just had to get out of the house (oh yes as it is covid times, her prognosis was given via a video appointment). I phoned my best friend and told her. Her response of “Shit” sums it up really. It was hard telling her. It was hard saying it out loud.

After a bit of tears, not many, I pulled it all in. I’ve buried it on the whole. I spoke briefly to the psychologist who did my last lot of therapy as I wasn’t sure about doing the group she wanted me to join. She told me to try and forget the time they had said and just go with it. After all it could be wrong. This I try to do but when you least expect it the words “eighteen months to two years” slap you in the face. I might not even get to 34 with my mum still here. My mum still has her mum at 63. It doesn’t feel fair. It’s unlikely she’ll see a grandchild.

I also feel a lot of guilt. We don’t always have the best relationship and I struggle with both ways of thinking.

The biggest thing that got me though was when I was stressing over all the chaos of cancer and someone said “it’ll get easier” and realising that it’ll only be easier, maybe, when she dies. Until then cancer will be there causing chaos. This has massively messed with my head. I’ve had nightmares. I’ve had panic attacks in the middle of the night. I cope by trying to just be practical and ignore it. But it gets to you in the end.

For more information and support about cancer check out Macmillan Cancer Support. You can keep up to date and share on my Twitter, Facebook or Instagram.

Therapy 2021: Session 4

Date of session: 26/01/2021

Please be aware that some of the content may be triggering. Please take care πŸ’š

Before this session I had homework to do. I left it until the last minute due to feeling ill and tired most of the time. I also knew it would be hard as it involved identifying emotions at some level. This is an area I find hard and frustrating. I also had to build a new safe place to use to do this. This I resented. I did it the night before.

At the start of the session, as always, I was asked how I’d been over the last week. I said about the pain and tiredness. She asked how I’d been doing with the self harm and I replied I still hadn’t self harmed since before Christmas. She was pleased with this. I am less so at this time. She also asked how my dissociation had been which I always find hard to answer as I’m not always aware when I’m dissociating. I explained a couple of things and she said it sounded more like acting mindlessly rather than dissociating. I’ll agree to disagree here but hey ho.

We then moved on to look at the new safe place I had created and went through all its sections and the different senses that related to it. I won’t discuss my safe place at this time as I’m not sure it is a wise thing right now. She was happy with the place I’d created and the use of senses. She then asked about emotions and feelings in the body. This is where I had difficulty and this made me feel uncomfortable and annoyed (anger and annoyance I can identify, though not always accurately in others). She now wants me to keep going through the safe place when I’m not stressed to see how it reduces feelings and calms me. Then move on to practicing it when I think of a mildly irritating scenario. At the moment I’m in a constant state of anxiety so we will see how we go.

After this she wanted to discuss next steps. She had, had her supervision meeting and discussed about doing further trauma work with me now I wasn’t self harming (a prerequisite I had been given). It was now decided it was still to unsafe to do the trauma work online due to my high score on the DES (Dissociative Experience Scale) as she wasn’t in the same room as me. I understand this to an extent but it feels like I have to somehow get better so I’m the right level of ill. I can’t be too ill, but I can’t be too well.

The above led me to having to make a decision. We could do another couple of sessions winding down and then leave it until face to face was an option or I can join a trauma information group in March for eight weeks and next weeks session would be my last individual session. I explained I would have to consider the timing of the session and how it would impact on my family as its a two hour course. I had some less than pleasant comments in response that left me incredibly upset, including “the group will go ahead with or without you” and “you’re lucky to be offered this so soon”. I don’t dispute how lucky I am, I just needed to consult others as I’m not the only person it will effect. She knows of the difficulties at home. I was told to just be assertive.

After the session I was in tears. I felt some of the comments were unfair. I had not turned it down flat, just explained that I wasn’t sure I could do it due to the issues in my family. But then I was an awful person. I feel now something that may be paranoia but also may not be, which is that this has all been to leave me without support and the world knowing how awful I am. I’m still not feeling great in regard to this. I have considered emailing the psychologist but I’m also scared too. It has triggered a lot of feelings of fear of abandonment.

I have managed to arrange that I will be able to attend the group of the offer is still open. We will see what happens next week.

Therapy 2021: Session 3

Date of session: 19/01/2021

Please be aware that some of the content may be triggering. Please take care πŸ’š

Since my last session I have felt incredibly unwell mentally. My anxiety has been through the roof, especially with regard to the homework she set, and I’ve had many flashbacks. I’ve not slept particularly well and felt very sick. This is where we started the session.

My homework had been to wish for my psychologist to get ill everyday. This made me feel particularly ill. It was to prove to me that I have no control over people getting ill. And I understand that and rationally know its true but I’m not there on an emotional level yet. The psychologist had not been ill, or at least she told me she hadn’t, and tried to reassure me. It had also brought up ideas that maybe this had been to prove how evil I am as well. The psychologist started to think maybe this had been a step too far too soon. We may go back to this at a later date.

The main point of today’s session was to create a safe place for me to go to mentally in my mind. This didn’t go particularly well and I think the psychologist saw this. I do feel I should have been guided better with my choice as its far from appropriate now I look back at it and at the end of the session it was suggested I might try somewhere else that is calmer. I feel because I was being asked to use emotions to find the safe place I misread it all. I find emotions so hard to place. I was totally lost with it.

I’m trying so hard in these sessions. I’m continuing not to self harm. I know it’s going to be more difficult before it gets better but at the moment I’m struggling. I feel so alone. I feel noone can understand this. Feeling constantly on the edge of panic is exhausting. I’m so tired right now.

Therapy 2021: Session 2

Date of session: 12/01/2021

Please be aware that some of the content may be triggering. Please take care πŸ’š

This session was an incredibly difficult one. I still feel very unwell from the session even after over 24 hours after the session. Many things were covered.

We started the session by looking at how I am doing with not self harming. At the time of the session I was on day twenty eight since I’d last sef harmed. I explained it was still causing me extreme anxiety that people will become ill. I explained I’m trying to keep going over the rational side of things but it is hard, especially before sleep. We talked again about the rational side and things I can do to make my bedtime easier. She then set me the hardest thing I could think of doing at this time. She wanted me to wish for her to become ill each day.

As soon as she said this to me I felt physically sick. The thought of saying that I want anyone to become ill is just so against what I think and feel and do. I’m still finding it hard to comprehend and my first day of trying it has left me feeling even more physically unwell. I understand the point is to show me I don’t have the power to make people ill but I’m still scared.

We also looked back aty results from the Dissociative Experience Scale (DES) that I completed in the last session. It came out pretty high at 85% out of 100% which says I’m dissociating a lot of the time in different ways. We looked at specific questions I scored highly in more detail so she could get a bit of a more in depth understanding about my dissociation. Problem with this though is that when you dissociate quite often not aware of things so it was tricky.

We also completed the IESR questionnaire which looks at the effect of trauma on my life. This consisted of twenty two questions related to how much certain things, linked to trauma, effected me in the last week. I scored fifty three which is apparently quite high and suggests PTSD (Post Traumatic Stress Disorder) which is stressing me to the point it impacts on my immune system. So it’s nice to know I score highly somewhere… πŸ˜• Above thirty seven identifies PTSD. Apparently it was not surprising I scored highly. It was a difficult questionnaire to do.

All the things I’m doing now are working towards starting proper trauma therapy. I’m feeling really apprehensive about it all at the moment. Life is feeling extremely difficult and I’m working on finding new ways to cope. We shall see how things go.

Therapy 2021: Session 1

Date of session: 05/01/2021

Please be aware that some of the content may be triggering. Please take care πŸ’š

Today was the first session of the new year after having a two week break. Its been a hectic break that has brought up a lot of issues.

Before Christmas it was decided that I would try and stop self harming. I haven’t self harmed since the day before our last session on the 16th December 2020. That means I havent self harmed for three weeks. She was pleased with this. I have struggled with the anxiety this has brought me.

With an OCD element to my self harm, it means stopping creates anxiety especially surrounding the health of those who are special to me. I believe if I don’t harm myself they will get ill. This has been tested greatly as my mum became unwell and was hospitalised only days after stopping. My friends son has also been unwell and this has added anxiety of whether I’ve caused his illness.

Within the session today we discussed this and did an analysis of all the times my mum has been unwell and whether my self harming behaviour could of been related. Obviously, when you look at it rationally, it turned out it was just a 50/50 chance. Rationally my self harm wasn’t having an effect. Also she pointed out that I was trying to manipulate the facts to fit with my thoughts or as she put it “your OCD”. It has given me a lot to consider. I can see the rationality but believing it is hard.

We also did a questionnaire to start working towards trauma therapy. As I have experienced dissociation she wanted to see how it effects me. The questionnaire we did was called the DES or Dissociative Experience Scale. It was interesting to go through as it made me see that maybe some things I experience are dissociation rather than normal. I didn’t get the results today but will discuss next session.

I don’t know what the sessions ahead will involve but I’m sure they won’t be easy. Thanks for all the support I get. I feel I’m learning a lot.

Therapy 2020: Session 16

Date of session: 16/12/2020

Please be aware that some of the content may be triggering. Please take care πŸ’š

Today was my last session of 2020. It was also meant to be the last session of this course of therapy but that has changed and will be now continuing in the new year.

Yet again the anticipation of the session was overwhelming. In all honesty I’ve just felt incredibly tired since last week and no idea what else I have felt. I’ve not really had the time to investigate what I’ve been feeling either.

Today we looked again at the stopping of self harm. To do this we looked again at the motives behind it and how I feel when I try to stop. The huge anxiety it gives me. This made her more sure this was now an OCD behaviour. We looked at intrusive and obsessional thoughts and how they relate to my thought patterns. I did get a little frustrated that I wasn’t being understood.

Because of looking at this as an OCD behaviour it has meant we are going to look at a certain way of combating this. I think it was called habituation and changing the way I see it from a need to a want. We looked at what is classed as a need and what is classed as a want. It did leave me feeling guilty about my self harm. There will also involve a behaviour experiment about what might happen if I don’t act on the thoughts.

Part of the habituation means giving up the self harm and riding out the urge and the anxiety it causes. This feels scary and my anxiety started to creep up just talking about this. It was edging on panic. The thought of losing the self harm is scary. I’m terrified. I have to log everything about how I feel, what I think, what I do to distract/help myself and how long the anxiety lasts. Apparently anxiety shouldn’t last more than 40 minutes. This is not my experience but we shall see.

This time of year is hards for me. Part of me wants to say this isn’t the right time to stop but is it just another excuse? I’m dreading later on when I don’t do it. Will I just be a failure either way?

I have two weeks to see how I go. Two weeks until another session. I hope not to be a burden to others. I’m hoping I don’t compensate with other behaviours I use to ease anxiety. We shall see.

Therapy 2020: Session 13

Date of session: 25/11/2020

Please be aware that some of the content may be triggering. Please take care πŸ’š

I’m not sure how this post will go or if it will make sense due to my current mental state. Please bear with me.

I felt very unwell going into the session today. I’ve had a bad week and struggled a lot. I’ve not felt “with it” and have withdrawn from most people.

We started the session with a recap of where I am with self harm. This has not improved but has not worsened. She then suggested looking at some things linked to trauma. This took me by surprise as we haven’t touched on it for several weeks. I could of done with some warning. It was very hard to discuss. She seems to have a habit of making guesses that are spot on in her examples. This does make me feel like something is connected.

A lot was spent looking at trauma and it’s link to my core beliefs. There was a lot of memory recall required and my brain felt ready to explode and became a mess. I felt I couldn’t get things out right. I felt I was making little sense. I felt overwhelmed. The voice started.

I felt myself becoming more and more separate. I talked about dissociation. We looked at things I can do to bring myself back. They are things I’m aware of. Making use of senses and mindfulness. This is what I need to practice over the next week.

I feel utterly drained after the session. I’m not completely with it. This is all I can manage. I’m sorry.

Therapy 2020: Session 9

Date of session: 28/10/2020

Please be aware that some of the content may be triggering. Please take care πŸ’š

Going into today’s session I was not feeling great. I was in fact dreading it and for the last few days I was considering whether to just cancel it. However I didn’t and so the session went ahead.

When asked how I felt I explained I didn’t know how to explain how I felt and wasn’t even sure I knew myself. We then went through it step by step to try and identify the emotions. This seemed to take the whole session.

Disecting the emotions was something I found difficult to do and to deal with. Emotions to me are so alien in terms of what they are called. To me they are just either good or bad. And disecting them actually made me feel worse. For some reason it made them feel more overwhelming.

My issues with emotions have long been there. I feel stupid that I can’t name them. I just find it frustrating.

I’m finding therapy is making me realise how much I’m actually struggling. I am finding issues I didn’t know were there and it’s demoralising. It’s like I’m never going to be able to function as a normal human being. This happens each time I do therapy. I see things I thought I was managing broken down and show I’m not doing as well as I thought.

I also forgot to do the activity mentioned to me last week which I totally forgot about. This didn’t go down well. There were also some other things that made me want to tell her that I know about mental illness and other things. There are times I feel I’m being talked to like I’m an idiot and have no idea about certain things. This is probably my fault. I struggle to talk. I struggle to find words.

I’m not sure where we are going to go with this next week. I was grateful for cat cuddles and being wrapped in a blanket during this session. I’m still finding the whole distance thing hard otherwise. Dreading next week already.

Why I Hate The Term “Mental Resilliance”

“Mental resilliance” is a phrase that keeps cropping up. But it is a phrase I have come to hate with a passion, especially with the way it is being used. It’s connotations make me uncomfortable and I cannot accept it.

First of all I think we need a definition of the word resilience. I’ve found a definition of it in psychology:
“The ability to adapt well to adversity, trauma, tragedy, threats, and even significant sources of stress.” Better Help, 2019

This doesn’t sound too bad. It suggests that we can learn how to get over issues more quickly. However this has led to people taking the phrase and believing that people with a mental illness should be more able to get over a mental illness quicker if they are resilient or even not suffer in the first place. This has been shown by comments made by prominent people in the media.

The problem with these comments is that they imply that if you get ill mentally you are not resilient enough. It gives a sense of failure and that you are not a strong person. This couldn’t be further from the truth. Quite often people with mental illnesses are strong and resilient for too long. They don’t seek help straight away as they feel they should be able to deal with it. This talk of resilience reinforces it.

So what should we be doing?

I’m not saying there is no place for teaching skills to help with mental resilience as it is useful to deal with stressful situations in the short term. However we need to make the narrative clear that mental resilience is not a concrete prevention against mental illness. It is still possible to become unwell even if you are resilient. It does not mean you are weak if you become unwell. Mental illnesses are often caused by things outside our control and for that we need treatment.

Instead, as well as teaching true mental resilience, we need to be saying that it’s OK to talk about our feelings in times of distress. It does not make us a “whiny snowflake”. It is a strong thing to do and will help with our resilience in the future. We need to be helping each other. Just because your younger and suffering does not mean you are less resilient than someone older. All it shows is that I’m the past people couldn’t speak about mental illness and now they can. That is resilience but in a different way.

I think what we need to do is reclaim the term mental resilience and educate people on what it means. We need to take on these people who seek a generational divide about living with a mental illness. We need to change the language we use.

So my question today is what do you think we should be teaching in terms of mental resilience? Feel free to share in the comments or on Twitter, Facebook or Instagram.

Therapy 2020: Session 6

Date of session: 07/10/2020

Please be aware that some of the content may be triggering. Please take care πŸ’š.

Today’s therapy session was hard. I mean really hard. I felt sick less than halfway in. My head has been thumping since and felt so full that it feels like nothing can move in it.

After last week’s statement that I made that I was worthless, it was decided to look at my core beliefs and challenging them using a form which had a name I cannot remember. It has a number of sections to work through.

The first section to consider was early experiences that could have created the core beliefs. This was where I found things the hardest. In particular hearing the word victim used for me. I’ve never associated that word with myself and I don’t think I want to anymore.

We then moved on to look at my core beliefs about me, other people, the future and the world. I had to think of three adjectives for my view of each. As seen below.

It was noted that most of my views were negative apart from those of other people. This was seen as a little odd considering the early experiences I’d been through. We discussed this slightly and it seemed to be the case as I say its my fault. This is something we plan to look at more. I’m not using logic it seems.

I’m also finding the technology for the sessions frustrating as we keep getting cut off in the middle of conversations, sometimes mid sentence, and although she calls me it stops me a little.

After the session I was a mess. I’ve struggled most of the afternoon and have had to work hard to get through it. Hopefully things will improve.