Tag Archives: psychologist

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.

Chaotic Cancer: A Family Member’s View: Diagnosis

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

I introduced this series of posts in this blog post ➑️ Chaotic Cancer: A Family Member’s View: Intro. This post is about my mum’s diagnosis of cancer and some information and thoughts surrounding that.

My mum’s cancer was an incidental finding. We had no suspicions that she may have cancer. There were no obvious signs (though looking back we have picked some out). It was far off the radar. I don’t know if this made it easier or harder to deal with. I have no prior experience of anyone I know getting cancer. But it was tough.

Mum went into hospital before Christmas with an inflamed gallbladder. She had antibiotics and came home. About six weeks later at the beginning of February 2021 she had a reoccurrence of the inflamed gallbladder and so they decided to remove it in an emergency surgery. It was then that they found something. On her liver were lesions. Tumours. They took biopsies. Then we had to wait for the confirmation of cancer. They knew it was. It couldn’t be anything else. But we didn’t. So I grasped that tiny bit of hope. Hung on to it tight.

Within a week she was back for the results. It was, surprise, surprise, cancer. A rare one. Slow growing. Treatable. Neuroendocrine cancer. That’s what they told us then. There was still hope. But I dissolved. That day I sobbed for an hour. Mum was meant to be isolating after exposure to covid while on the ward but screw that, I hugged her. Then the guilt set in.

To understand this guilt means explaining that in my therapy I’d been working to stop self harming. I had been using as an OCD type compulsion to stop people getting ill. I’d been told it had no effect on them not getting ill. Then this happened. I’d made my mum get cancer. I even told my dad it was my fault. The guilt overtook me. I had ended the therapy by then ahead of a new group but all I wanted was to email the psychologist and tell her she’d made me give my mum cancer. Yup, totally irrational. Or that’s what I’m told. I bounce back and forwards still.

With the diagnosis came a lot of emotions. Emotions I didn’t understand. Emotions that were set to overwhelm me along with other people’s. So I pushed mine down. From the day after the diagnosis I didn’t cry for a long while. I threw myself into the practical. I didn’t feel anything. I totally blotted out my feelings. I had enough to overwhelm me with other people’s emotions. Those had a name though as people could tell me them. My own I can’t name.

So diagnosis was stage one of the whole cancer chaos. The start of the chaotic world it brings. And beginning it all in the midst of a pandemic has brought challenges as well. Mum was on her own for the diagnosis as at our hospital appointments have to be attended alone. I think that has hurt her a lot. I don’t know though.

So from diagnosis comes many more tests and appointments. These I will discuss in another blog post. I think I thought diagnosis would be the hardest part. How wrong I’ve been.

If you want to share any experiences, thoughts or resources feel free to use the comments or my Twitter, Facebook or Instagram accounts linked to this blog.

Being Invalidated

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

“To invalidate means to cancel something or make it void, as if it never happened. In invalidate you see the word valid which means true or correct. When you invalidate something you are making it less true, less official, or less correct.” (vocabulary.com, March 2021).

The meaning above can be applied to things you experience. It can be caused by other people and events. It can make you question your thoughts, feelings, emotions, experiences and reactions. It can make you feel awful. And people sometimes don’t even realise they are doing this to you.

When you tell someone that what they feel isn’t justified or to just stop feeling that way, then you are invalidating the way they feel. You are telling them what they are feeling is not true and not correct. Yes, you may not have felt that way in that situation but everyone is different and that doesn’t mean that what that person is feeling is invalid.

It’s important we think before we speak. It’s what might feel like silly things that can have an effect on other people and cause them to feel invalidated and it can start when we are children. What we are saying may to us sound reassuring but it ccam invalidate the child. Saying to a child who is nervous about an exam that they shouldn’t be is invalidating. Instead saying you understand why they feel that way but you feel like they are well prepared so it should go well is acknowledging their feelings as valid while reassuring at the same time.

Some mental health professionals could also do with understanding the power of invalidation. Telling someone that what they are experiencing is minimal or not that bad can have lasting effects on everyone and especially those with a mental illness. It can cause them to deteriorate further. On my write ups from the psychiatrist appointments it would often say my self harm was superficial and it would make me try to cause myself more harm as I felt they weren’t taking me seriously. I’ve also heard of people with eating disorders who are told they are not thin enough being made sicker.

I know that although having a diagnosis can be a burden I felt it a validation for what I was/am experiencing. It made me feel that someone could see that something was wrong and I needed help. However this means professionals need to be careful about removing diagnoses from patients as it can add to invalidation. You are taking away the validation you gave them. There needs to be a conversation and careful explanation.

It is possible also to invalidate yourself as well. This is harder to stop doing, I know I do it a lot. It’s important for us to try and allow ourselves to experience our feelings and acknowledge them. This is easier said than done though.

So when speaking to anyone try to consider their feelings and not cancelling them out. We all need to think of how our words and actions impact on others.

Therapy 2021: Session 5

Date of session: 02/02/2021

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

Today was my last session of individual therapy. This will be more of a thoughts on things post as there was not much content to the session to be shared. The main part of the therapy today was to do a screening for joining a trauma information group in March.

With the end suddenly happening (it was only mentioned last session, last week) I feel abandoned. I feel I have no support. I feel alone. They say phone the duty worker or crisis team. These are options I can’t do due to my home situation and the anxiety that means I don’t feel able to talk easily to staff I don’t know. Also I know that someone who mans the duty phone is someone I put in a complaint about and so I was removed from her care. She has since blatantly ignored me when I offered a hello when I saw her in the building of my community mental health team and turned her head away from me. She has also said some things for which the complaint was made. I’m terrified it would be her that answers. I have lost so much support in the last year.

I know I’m lucky to move onto this group but it’s a stop gap. I’m apparently not safe to do online trauma therapy so this is a trauma information group. This will just give us eight weeks of generic information about skills. For this I have to be low risk and stable. So that is what has been said while I’m not safe to do the one to one. I find this confusing.

I’ve not self harmed for seven weeks. I hate myself for this. The anxiety is high. But I’m expected to just be OK. That’s how it feels at least. I just want to harm again. I feel it wouldn’t matter anymore. No one would check on it. And so what if I go to far. It wouldn’t matter.

I know I sound pathetic and I probably am. But I’m angry and upset. Maybe I should of left this post for another day but I needed these thoughts out before I explode at someone. Especially as I’ve been told by someone else something that has annoyed me and left me feeling even more left out and alone. It’s left me with suicidal thoughts (I’m safe and won’t act on them). I’m tired of being made to fight so hard.

I apologise for being self pitying. We shall see how the trauma information group goes when it starts in March. I’m unsure if I will record this or not. For now this is the end of therapy.

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 15

Date of session: 09/12/2020

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

In this session we discussed my self harm. It’s the barrier to me gettting proper trauma therapy. I had a decision to make whether to just carry on self harming and forfeit trauma work or give giving up a go.

Before the session I’d tried to write down some questions and thoughts linked to this. It started off OK but I spiralled down into self doubt and hatred. Please see the image for my thoughts.

In the session I discussed some of these thoughts. We talked about how the intention to try needed to be sincere but trying to give it up could continue alongside some prepatory work for trauma therapy. This means that in the new year I will have another four sessions at least and see where we go from there.

This has made me feel all sorts of things about myself. Hatred is very much in there, towards myself. I’m defensive of the self harm even though I know it isn’t healthy. I have discussed some reasons behind it with therapist.

We also looked at the year and a bit I managed to have without self harm and how that happened. We went through if there was anything significant at the time. We discussed some behaviours and thoughts and I was told it very much sounded like Obsessive Compulsive Disorder (OCD). This is something I’ve tried to discuss before with professionals and been dismissed over so it was validating to have it recognised.

This is where we brought the session to an end as we’d already gone over the fifty minutes by half an hour. Next week is my last session of the year. It will probably be a crucial point. We shall see.