Tag Archives: covid-19

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: 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.

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.

So It’s Been A Year…

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

It’s been roughly a year since the UK went into a restricted state. We’ve been in and out of lockdown. Many things have never been back. Therefore I thought I’d reflect a little on the last year. Some things will be linked to mental health, others more general.

What I’ve Learnt

The whole situation has been a learning curve. I think everyone has learnt something about themselves and others as well as maybe other skills. Here are mine:

1. I need social contact

I’ve always found social contact difficult and overwhelming. I’ve always pushed myself to do things socially and I’m exhausted afterwards. But I’ve found I do need it. I have missed seeing people. Having the hugs. Being with my friends. Just hearing their voices (I struggle still with phone conversations). I can’t wait to meet them.

2. I need alone time

I’ve known this for a while but it has been confirmed with being stuck with the people I live with All! The! Time! I need quiet. I need to get away. It’s tiring being with other people. I think everyone needs alone time really, we all just differ on how much.

3. I can draw

Turns out I can draw. And actually practice does improve it.

4. Phone/video appointments aren’t a substitute for face to face

Obviously a lot of appointments changed to being either online or via phone. I’ve found these so hard. I feel like I can’t get things across as well as I do face to face (and I don’t feel I do that very well anyway). I feel people lose the ability to understand people as well when you take away the physicalness of being in the same room. Also technology has a habit of not working and making it all more stressful. (Although being able to have my cat with me during therapy was a positive).

5. You can’t make eye contact on Zoom

Someone pointed this out to me and its bugged me ever since because its true and no matter what I try I can’t change that. I hate eye contact most of the time but I also try really hard to make some as I know it’s expected. I should be happy therefore that I don’t have to make eye contact but instead it’s annoyed me. Yes, I’m a paradox.

What Scares Me

Along with learning many things, this whole situation has created many fears within me for the present and the future.

1. Fear people will get ill

I’ve always been scared of people in my life getting ill. It’s out of my control although I have gonw through many things that I believe have given me control. Logically it’s not true, mentally I feel to blame when people get sick. This was heightened once we really got into the reduction of social contact and lockdown (before that coronavirus didn’t bother me, odd I know). I was often in tears that something I had or hadn’t done was going to make those close to me ill. I was so strict with cleaning and washing hands, more than usual. I was terrified. I still am.

2. Going outside or into shops

I’ve always found being out and about anxiety inducing, especially on my own. I’m now able to walk the dog just me and him but otherwise I struggle. This has been heightened in these times even though I was forced to shop for my parents on my own. My anxiety was through the roof. Now the thought of going back in to shops without anyone or any restrictions in the future terrifies me.

3. The lack of restrictions

There will come a time when restrictions are gone. Yes it will be a positive in many ways but I don’t feel anywhere near ready for this to happen and I don’t think I will be for some time. Each time a restriction is eased I feel such a state of anxiety that I have panic attacks over it. The thought of things being “normal” is something I can’t comprehend yet.

Where am I at?

So overall I’m struggling mentally with everything. There is a lot of change currently and it’s left me unsettled. Large parts of lockdown have been a struggle but other parts have played into my comfort zones of hiding away from people. I’m very much a home body. People keep talking about holidays and that’s the last thing I want to do. Not going on holiday was a plus for me and now I have no excuse to stay home. I both want things to come back but others I want to stay as they are.

What are your thoughts on your current situation, wherever you are? Feel free to share in the comments or on Twitter, Facebook or Instagram.

The Return To Normal

In the UK we are starting to hear plans of how things are getting better and back to some kind of “normal”. This has brought up many feelings for myself and others. Here I thought I’d explore some of mine.

In all honesty the thought of going back to how things were before the pandemic and lockdown feels scary. I didn’t particularly like it then and I’ve become more of a home body now like I have done in the past. I don’t want to go out other than to walk the dog. I like being at home. I like being able to do the things I want to at home. I don’t want to go back in to shops that are crowded. I don’t want to have to go to places that I don’t know. I don’t want to socialise. I’ve become comfortable with this life.

I really want to keep the two metre rule in place. I feel its helped us to learn a little about personal space, something so many people weren’t good at before. I don’t want to feel people closing in around me. Part of this fear will also be because we’ve not been allowed to be near others so we’ve become hyper aware of avoiding people and it will be strange to go back to how it was before.

I also have quite liked the lack of expectations on me. I’ve not been expected to be sociable which I struggle with normally. I miss my friends massively, please don’t get me wrong, and I want to hug them but I’m terrified of the social interactions returning. I’m scared I’m not going to manage it at all. I’m scared I’m going to screw up all my friendships again, like I have in the past. I liked having a stress free birthday and Christmas.

Travelling is going to be hard as well. I struggled with public transport before the pandemic and I feel that any progress I was making has been torn away. I don’t feel I could use public transport for some time.

I’m also terrified of just the thought of people doing normal things. What if things aren’t as OK as it seems? What if people I love become ill still? I’m scared of losing people still. How do we know it’s OK?

So those are a few of my worries. I currently have to fight off the panic attacks linked to thoughts of things becoming “normal”. And will normal actually look the same as before? I’m not great with any change but this all feels so big. I’m scared and overwhelmed with it. I’m trying to just go by each reduction and not try to think too far ahead but it’s hard not to let things snowball in my mind.

I hope things will get easier for all of us. If you wish to share your thoughts on lockdown easing and any tips you think may be useful use the comments below or 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.

Winter Self Care In Lockdown

I know we are quite a bit into winter but as I’m in the UK we all know winter is going to be here forever more (yes I’m exaggerating). So I thought I’d put some winter self care together and that which is appropriate for a lockdown.

1. A warm drink

Simple maybe? Maybe not. The thought of making a hot drink for some feels insurmountable when times are hard but if you can it may make you feel better. Even just an ordinary soft drink is good as well. I’m not one for hot drinks myself so understand if you don’t want one.

2. Snuggle in some blankets

If all you can do is keep yourself warm and comfortable it’s still self care. It’s nothing to feel guilty about, your comfort is important. Enjoy the blankets.

3. Watch something you’ve wanted to

Whether it’s a boxset binge or a film you’ve been meaning to watch, make the most of the cold weather and the instruction to stay indoors and watch it. Remember you can always pause something if you can’t concentrate for long. I often watch episodes or films in bits as I can’t keep my mind on things for long.

4. Something creative

If you feel up to it then what about something creative. Drawing, modelling, painting. I’m currently doing a painting by number that really helps me with my anxiety. Even a jigsaw or lego is creative. Do what you enjoy. It doesn’t have to be perfect or put on display.

5. Reading

I read quite a lot but I know it’s not always easy so there is the option of listening to an audio book if you feel that would work better.

6. Nap

Naps are amazing. Have no guilt in giving your body what it needs.

So those are a few ideas from me. Obviously there are lots of different things that you can do. Do what is good for you. Remember self care isn’t selfish. It’s something we all need.

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.

Lockdown 3.0

This is not a post I thought I’d write. Actually more hoped I wouldn’t write. The UK is back in lockdown. Our 3rd. I won’t go into the politics of it, that’s been covered a lot.

With each lockdown there has been new challenges to get through. I’ve found my tolerance for other people has deteriorated dramatically. I’ve felt more and more alone each time. And my support system feels more and more depleted each time.

With regards to other people, they make me angry. Anger is an emotion I struggle to cope with so it’s an awful place to be in my head. I want to scream and shout at the selfish people who keep putting us back in this place of lockdown because they can’t do as they’re told. I want to shout at those who get too close not only because they shouldn’t, but also because it scares me. People scare me enough as it is. The pandemic and lockdown just add to this.

Loneliness is another aspect of lockdown that gets to me. I can message people but it still doesn’t feel enough. I live with people but sometimes that makes me feel lonelier as they don’t understand what I’m dealing with inside. I don’t like a lot of physical contact but there are some people I just want to hug. I miss them so much. The thing is I’m also finding myself getting anxious about talking to people. Zoom groups are feeling harder than ever and I feel so detached.

The reduction in support is also feeling more of an issue. My contact with mental health services has been depleted and I’m struggling. I feel like I have nowhere to turn at the moment and more things I use to keep me well ish are disappearing.

So yep lockdown 3.0 is set to be a challenge. I’m trying so hard. I’m looking at skills I can use from DBT to help me get through. I just need to get through it. The thing is I’m a paradox and the thought of “normal” scares me too.

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