PTSD. I have just had my third major surgery and so traumatized my counselor says it is PTSD and living with cancer which the surgeon says has been removed. He said last year he had removed the cancer and cured me !! The year before I had the colon removed a different hospital.
since a terminal diagnosis in 2017 of Colon Cancer which metastases to my Liver i have had about 20 weeks where I have not been On chemotherapy and the reason for that would be hospital stays and 3 surgeries. Each time I suffer really very badly from the pain relief drugs ,it is horrendous. I agreed to this recent surgery after a discussion with the pain management and agreed to an epidural.
I was the worst i have ever been, with constant hallucinations , not knowing where I was , and fear, it was extremely difficult and scary. The first and second time of surgery was difficult and persuade the pain relief would be managed i continued, I asked if it is likely (I believe the statistics are about 5 years clear)
What happens the answer is the same as the last 3years. Chemotherapy and surgery.
I can't go through the effects of the drugs again i still feel anxious and get palpitations thinking about it all.it is down as 'Cameron's my notes. I also feel embarrassed and let down.
So my life after cancer is 'anxious ' and I feel utterly lost
Ps my first experience with cancer was aged 7 childhood Leukaemia and I have been to appointment at the same hospital each year since and still do now for checks and require d treatment. That's 42 years.
Hello Dave48,
Thank you for your reply. I am sorry you have been through so much. It is unfair.
I have two stomas, a colostomy and an urostomy. I also panic over ache and pain. I spoke to my GP and told him this and he told me its normal to feel that way! When I told him I think I have PTSD, he referred me to the surgeries in house counselling people but there is a 6 month waiting list! So no help there.
Thank you for your kindness.
Lisa
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The provision for our mental health when dealing with cancer is definitely lacking. 6 months to see someone could be too late some. I was advised to go private as it would take a while to see someone. When I self referred I was initially told I was not ready. ! Eventually when I did see someone they thought I could have been so traumatised that I would not be able to engage with them. I did though. But such mixed messages and struggles at a time when your so vulnerable.
I did refer myself again as I needed help but the people I saw where no help and I felt worse so I discharged myself and now muddle along as best I can. Not ideal but what can you do.
All the best
Hi Lisa
6 months must seem like an awful time to wait but I hope you persevere as the in house counselling may be of some help to you.
I hope that you are finding the messages people are posting to be of some help and know that you know that you are not alone in feeling the way you do. Your feelings are perfectly normal and to be expected.
I know you want to avoid seeking help from any cancer related services so it has been really brave of you to be able to engage with this forum.
I hope today is better day for you.
What frustrates me a lot is that we are constantly surrounded by messages in the media telling us to keep a check on mental health. To recognise the signs and to be open to communication and support. And if it’s not our mental health is about cancer. Be clear on cancer etc etc etc - now all well-meaning for those whom have not got cancer or mental health issues but I wonder if they are more damaging for us that have had cancer and struggle to deal with surviving the trauma of a horrendous killer. From my personal experience to get help was at best difficult and at worst traumatising in its self. Being told that I was not ready for counselling and I should visit my local cancer charity group. Sitting in a room with a professional counsellor , in tears saying I need help, to be asked well what do you want me to do , over and over again. All I could say is “ you’re the expert you tell me”. I left in tears and did not return. Is this the level of help we get – like waiting six months to get a referral its not good.
Since my cancer I have seen 3 therapists - one actually saved me from a spiral of gloom the other 2 were useless.
I cannot give enough praise for the physical care I got from my team – they did some god awful things to my body but at the end of the day they ultimately saved my life – and that’s where I always try to end up when questioning my mental health.
Hi Dave and Cazza
First of all, thank you for your lovely messages and kindness and support.
I too think 6 months is too long. I told my GP that it is a good thing I don't want to hurl myself of a bridge, again he just looked at me. He told me that it is normal for me to.be anxious after what I have been through. I told him it goes beyond "anxious". I told him I can't go for my annual scan as I freak out and can't breathe and he just nodded. He tried to prescribe tablets, which I refused, as I enjoy driving.
Tablets are not the answer. I took them when I was in hospital and other than zone me out, they didn't help.
My surgical team of colorectal and urologist are great. The cancer is good but I have to get away from anything that is cancer related and I know this sounds awful, but I don't want to be in a group which discusses their experience, my experience is horrific enough.
Enjoy your day my lovely, beautiful and mad (in a nice way) friends, which I shall call you. You've helped me more than my GP, thank you,
With kindness,
Lisa
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Lisa you are absolutely right if you surround yourself with triggers then you will surely nevery be able to move yourself forward.
I agree too on the tablets , sure for some they will help but I was on them for a year and when I stopped the withdrawal symptoms were so bad I promised myself never again.
For me the way forward seems to be to distance myself from specific support group for guys like me whom have been or are going through trauma. As you very righty say what we have been through is so traumatic hearing about others just makes things worse , in effect retraumatising us. I now just dip in and out when I have need to be sure what I feel is felt by others , I guess resassurance that my path is as normal as it can be.
I do find it a lonely place though at times. People don't know how or are simply not comfortable in talking about cancer.
Hi Lisa
Glad to have been of some help. I agree about the tablets and I would only want them as a last resort. I take enough medication as it is which also probably impacts on my moods.
I feel the same way about any group things and they are not for me. I'm pleased your surgical team are so great.
Apologies if I am suggesting things you already know of but have you tried the headspace mindfulness app. I have started using this after lots of recommendations and it has been helpful.
I know you really want to avoid to cancer services but if you ever feel able please contact Maggie's. I went 3 weeks ago and the hour I spent chatting with the specialist nurse one to one was so therapeutic. It was almost like she could see into my head and she is the first person I have spoken to who totally understood. I was told I would have to have to wait a few weeks for a psychological assessment but they rang last week and my first appointment is next week which is much quicker than I expected.
Its taken me 4yrs to be able to get support so in the meantime I hope you keep using this forum to seek support and there will hopefully come a time you feel you can use your strength and resilience to move forward.
Hi Dave48 and Cazza,
Thank you for genuine and supportive replies.
You’re both probably the same as me, I pain over any ache, pain, lump, bump or bruise. It’s awful and I know I shouldn’t do this but I look things up on the internet and of course it sends me into over drive panic mode.
Nobody does understand what we have been and still going through. It’s like “well you’re better now”, which is great and true but it is so hard.
I find every weekend, I panic about cancer and newspaper and magazine articles on famous people or storylines in soaps don’t help. It terrifies me.
The tablets may help some but yes the side effects are horrible and personally I don’t think they are the answer and I take enough medication without adding them.
I am glad about the help and how quick the psychological assessment is. Much quicker than I thought and what is on offer at my GP surgery. I am still reluctant and it’s still a no go to go to Maggie’s centre. Our Maggie’s centre is on the same site as the cancer hospital which is why I won’t go. I go into breakdown mode at the thought of the annual MRI.
Enjoy your weekend both and thank you for being there,
Lisa
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Hi Lisa, if you're gonna look things up on the internet ( and who doesn't tbh?), then try n stick to reputable sites- like this one, n Cancer research UK. Then you'll know you're getting up to date and accurate info. Trust me, I'm a ( retired) librarian lol.
Every time I read a novel where a character's affected by cancer, I curse at yet another lazy author who doesn't know how many of us are now LIVING with cancer. Sorry, didn't mean to shout, can't bold/ underline on here.
Have a good weekend x
So glad to have been of some help. I have sent you a private message.
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