Dealing with ‘triggers’

Hello JosieK, I’m sorry you’re having a bad day, let me start with the virtual hug first ((())). I was wondering what was making this a bad day and what your triggers were? 

I used to hate people banging on about looking forward to sunny holidays, and cringed at greetings involving the sun people seem obsessed with the sun being good and something to look forward to and it was really hard to hear.

Incidentally yesterday I was listening to song yesterday and the lyrics said the sun was smiling, which is so much nicer. I also remember the lyrics of a song called Valerie, which actually is about a read head and mentions ‘I hope you didn’t catch a tan’ which makes me smile. 

Planning ahead is another difficult area and sometimes things are said and I think I just glaze over and stop listening as I’m listening to my thought instead. Worst still is when people tell me what I should or should not be thinking or doing. They have no idea unless they have been through it themselves and even then everyone is different, so I have on one occasion (possibly others that I don’t remember) told a friend that what they are saying is not helpful. In the early days I once strategically left a Macmillan booklet about talking about cancer on a coffee table. 

People come at things from their own experience or lack off, and sometimes comments come from a misguided way of trying to help or from panic, there’s a silence that they fill with something that they did not think through before uttering. I recall mentioning to a friend that I was needing an mri as my ct scan had picked up a suspicion legion, the reply was well that’s ok they can cut about it out, people can survive without a liver. I had no comeback I was speechless. I remember a coffee with friends when 2 of them (you can tell this is a while ago) spoke about a friend they had whose husband had died suddenly and the thought that it was better to die quickly than Knowing about it for a long time. A split second realisation that I might be upset about that and a quick glance at me and change of subject followed. 

I have had a short few weeks of counselling and been on the Macmillan HOPE course and done some mindfulness sessions. I have written down my concerns and acknowledged them, and I don’t think there are any new ones that come up so I think I can now acknowledge the thoughts when they crop up again and let them float by not to be dwelt on at that time. It’s not always easy to do that though, it sometimes depends on timing. There are times when I am under more stress and that makes the floating by more difficult, for Me that has been waiting for scan results, (scanxiety) having a break from treatment, changing treatments, cancerversaries, and when others have passed away, (the last one brings a bit of survivors guilt feelings). It used to be that when I was relaxing and watching tv I’d get annoyed at adverts for funeral plans, cancer research, etc would annoy be as I wanted to switch off. A friend persuaded me to go to the cinema to see a comedy starring Celia Imrie, I thought that would be good the trailer was very funny. The film had one of the main characters die of cancer ! My friend saw me sink further into my seat at the diagnosis part of the film. One of my sisters said she had not seen the Billy Connolly and David Tennant film but her son said it was really funny. I watched it 18 months ago on telly on my birthday. It’s called what we did on our holiday, spoiler alert Billy Connolly dies of cancer on his birthday! I have to remember that true friends and family do things by mistake and it’s great when we get to a stage that we can laugh about those mistakes.

If you have Netflix there is currently a Headspace series, a visualisation of a Headspace mindfulness app you can get on your phone it may be worth having a look. Mindfulness is about staying in the moment not racing too far ahead. I think participating in a support group is great as is here. It’s good to feel that what your feeling is very natural. 

I think I now have to repeat a big virtual hug ((()))

hi josie  i totally "get it" and triggers is a fine way to describe it and only somebody with cancer can understand it's a very lonely place and if you remember the song called i know him so well and the words "no one is completely on your side" springs to mind,  for me it's not being able to return to work despite being well able to,or somebody saying if you bought something it would be paid for in 5 years and the other day someone said once you get cancer your finished though i think they just were not thinking,sorry should have spaced this out more but thinking as i typed it xx

Thank you so much for for your replies and virtual hugs, I had a sleepless night so it was good to be able to read your replies early this morning. It helps to know that I am not on my own thinking this way. Thank you got taking the time to write to me. 

At the moment there aren’t too many triggers as I’m spending all my time at home with my husband and my 12 year old son.  But I am really nervous about going back ‘out there’ and meeting up with people again. I guess at the moment I am feeling kind of in control of things in our little world and the idea of going out and seeing people scares me a little. If I hear anyone else say ‘you must stay positive’ or ‘when the lockdown ends you have to get on with your life’ or ‘live your best life’ I may just scream. We know this don’t we?! But it’s just not that easy. I know they are only trying to help, but everyone seems to say it and it often feels like a lecture. I want to say at the moment the fact I got up, got dressed and went for a walk is me being positive! 

I am worried about the prospect of family/friends gatherings (when they are eventually allowed)  because I don’t feel like  I am the same person I was before the pandemic (I got my diagnosis last September and I started treatment on Boxing Day.) 

Everyone is talking about “when things go back to normal” and how wonderful it will be, but I feel like I will never be able to go back to “normal.” My outlook has really changed. Like you both say, when people innocently talk about needing sun or planning something years ahead I get this urge to just run away. I feel like a real misery for even thinking this way. I keep thinking I’ll just have to make myself scarce if I find it too stressful and I keep planning different ways of escaping, like hiding in the loo if I get upset! 

The main triggers lately are from my family. We are fortunate that until my diagnosis we haven’t had anyone on my side of our family have cancer for years, so it’s all new territory.

One trigger over the last few days has been that my younger brother and his girlfriend  have just had a baby - I am an Auntie again which is lovely - a beautiful little girl!! I am so pleased and yet I am finding it very difficult at the same time. When they have talked about scans, hospitals etc I just end up thinking about cancer. I feel so ashamed that in this joyful time all I can think about is my situation and whether I will see my newborn niece grow up and then my thoughts quickly spiral. I have told my husband about this and he says he has had similar thoughts. He says it’s an understandable reaction but we both feel guilty. We obviously would never mention this to our family.

My husband is very understanding but I think even he gets frustrated with me which is why I decided to approach a local cancer support charity to see if I can access counselling. I am being assessed next week. I just want to be able to say some of these things out loud to someone else without hurting their feelings or worrying that I will bring them down with me.

Hopefully, I’ll be able to start to come up with a way of dealing with all if this before shielding ends - I can’t be spending every future family get-together hiding in the loo ;o)

Xxx 

hi,josie i would'nt get to worked up about meeting family or friends some will be find it awkward and not know what to say while others will say the wrong thing and still more will say kind words but will not be sincere

and people no matter what you tell them will put their own story to it so i wouldn't bother explaining it to them if you say your on immunotherapy they still call it chemo

i wouldn't let any of that get me down

xxx

Good luck with your assessment this week JosieK.

Hiya 

Thank you! And thank you for your reply the other day it really helped me so much. 
The assessment was amazing, there is a local cancer charity here and they have offered me 4 counselling sessions
and possibly more depending on how I get on. 

When I talked on the phone the woman doing the assessment just ‘got it’ and wow, I feel already a little weight has been lifted. 

so between you all you have helped me so much this week. I have realised I am not going through this alone it’s just the places that I went to for support have changed and that’a ok! 

Hope you are ok KTatHome x