Tag Archives: treatment

Chaotic Cancer: A Family Member’s View: First Chemo

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

This is my view of living with someone who has cancer as someone who has a mental illness. It is my personal experience of the chaotic cancer ride.

A milestone is the first chemotherapy session. It was something we had waited for, for quite a while after diagnosis, or so it seemed. We had a lot of cancellations and changes before the first session took place. Because if the chaotic nature of everything this has taken me some time to write.

Mum had to go to a specialist hospital in London for the first session. This was about an hour’s drive from where we live. It was tricky logistically with having to go up in the days before for blood tests and covid swabs. It was also tiring for my mum.

The stress of the first chemo was immense. It was all so sudden that it came together after all the cancellations and changes. The panic kicked in the night before mum had to go. I couldn’t sleep. I was scared. But I didn’t feel I could show it. I decided I needed to just push it all down. I couldn’t deal with the overwhelming feelings. I needed to just be practical. It was probably not the best idea but how I could cope.

Chemo for mum took a long time. They had trouble with her veins and other things. Plus having three different drugs meant it took all day. She was exhausted by the time she was done and home.

At first, after the chemo, mum didn’t feel too awful and then it hit. She wasn’t sick but felt it. She was very tired and this made her frustrated. Her mind often went blank. It was a difficult time to be at home. Life was just very stressful. I was struggling. I didn’t know how to describe my feelings or what was going on in my head. It was all extremely overwhelming. I didn’t talk to anyone really about how I felt as I didn’t have the words. I just said I was tired, which was true as well.

After the first chemo you think you understand what could happen from what you’ve been told but living it is so different. And if one more person tells us to think positive I think we’ll all scream.

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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: Intro

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

About six weeks ago (or longer, the days are all merging) my world was hit by the news that my mum has cancer. It’s something I’ve been dealing with on top of coping with my mental illness. Therefore I thought I’d use my blog as a way of recording how I cope (or not) with everything that comes from living with someone with cancer. And not just anyone living with someone with cancer but someone with a prior mental illness. I know bits will overlap with everyone who supports someone with cancer but there are bits that I think I’m finding harder due to my diagnosis. Maybe not… But this will be my way to explore it.

I’m planning to set this up on it’s own page of my blog so it will be together with other information or support as well. And it will all be in one place.

My plan is that I will be as honest as I can be. That I will look at the good, the bad and the ugly. This may mean there is triggering topics discussed so please be careful. As always I will put a trigger warning at the top.

So post one will hopefully be up shortly (once I’ve written it) but I don’t think I will keep these posts to a schedule as life is already chaotic. I also still want to write about other areas of mental health and illness too, this is just an add on.

As always if you want to share or ask questions feel free to use the comments or my Twitter, Facebook or Instagram accounts.

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.

Therapy 2020: Session 14

Date of session: 02/12/2020

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

Getting round to writing about this session has taken a while. The session left me in a highly emotional state and it took time to get that under control before I could even begin to process the session. There will be holes in this as some personal things were discussed that I’m not ready to share.

The start of the session was taken up with starting to think about what will happen after my time is up as I’m only meant to have another two sessions. There was a discussion of trauma based therapy and EMDR but this won’t happen unless I stop self harming completely. This has left me with some choices to make and things to consider. In the session I felt myself becoming very defensive around this conversation. It’s something I need to work through before next week.

We did the usual scale of how I am and I just couldn’t think how I was. It’s been a tricky week but it’s not been the worst. But I don’t feel great. It’s all very confusing to me. I really don’t feel I have a handle on this at all.

We then went back to the formulation we’ve been working on to look at my core beliefs and whether things have changed. And when looking at them and working through it, they have to an extent. Instead of using evil to describe myself it’s gone to bad but I also added in that I’m a burden. My core beliefs when related to other people have also changed though this was harder to look at. It really showed black and white thinking in my world which is hard for me to acknowledge most of the time.

This therapy has definitely made me see that a BPD diagnosis does fit but it has also made me start to question whether something else is not quite right too. This again is something I need to look into.

We seemed to make progress in this session and where I had written out some things after the session last week, I shared some of this. That was never my intention but I found it helped me explain things so she understood it better. She seemed to find this useful too.

I’m finding my issues with language surrounding events is still there and it makes me extremely uncomfortable to hear certain words. I know I shouldn’t be scared of words but I am. This is part of the reason I became highly emotional at the end. The session did seem to end suddenly though and I don’t feel that helped. But it could also be that I started to dissociate.

Overall it was one of the better sessions in that I feel progress was made, even though I’ve felt awful ever since. A technology glitch may also of helped in that the video link wouldn’t work so it was all on the phone and I couldn’t see her. Let’s see where next week takes us.

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.