Life after cancer

This group is for cancer survivors and people who have finished treatment. It is a space to discuss things like the physical and emotional after effects of cancer, returning to work, or trying to move on with your life.

PTSD

Cazza169
Posted by

   I agree with

Maggies is nothing like walking into a cancer entre. I loved the feel of the place and it's relaxed and welcoming atmosphere. I explained I needed some one to one support and was taken to a beautiful room overlooking the lovely gardens and spent an hour chatting and crying with a lovely member of the team. There is lots of good group support there too, however, I am not a group sharing type of person and was reassured that there would always be someone to speak to one to one if I needed it.

I never in a million years would have thought that I would have been able to do this but am so glad I did.

Cazza

Cazza 
greg777
Posted by

Hi everyone,

i have suffered from PTSD and a couple of things have helped me, so I thought I’d pass them on:

1. The past cannot repeat itself - whatever we experience in the future, it can and will not be the same as what has happened in the past. I came to realize that my PTSD was connected to a fear of the past repeating itself - but no matter what happens, the future will always be different - maybe in a big way, maybe in a small way, but it will always be different - and how can I be afraid of something when I don’t know what it will be?

2. This may sound odd but I would force myself to go back to the hospital. It is not the building that is awful, it is the memory that is awful. A trick for me was to experience positive things in the hospital (maybe just go for a walk around it, not for an appointment per se). Over time, you can counter balance the negative experiences with positive ones and that helps to dissipate the negativity associated with a physical place.

I hope these might help in any small way.

Greg

Chulla
Posted by

Hi I don't know if it helps but a friend of mine works as a councillor in a women's charity, maybe seeking help in a different environment could be a step falward.

Another way could be to ask a Maggie's member to meet you in a nearby coffee shop ?

I know someone came to meet me while I was in a hospital ward, I'm sure they will make every effort to help.

I have a lovely lady who works for McMillan at my local hospice and comes to my house I feel so privileged. Ring yours and just ask.

I hope that you find a way through.

Regards

Chulla

LisaCardiff
Posted by

Hi all,

Thank you for your lovely replies and taking the time to do this 

I physically cannot go to the cancer hospital and I cannot face the thought of cancer. It scares me senseless. I can't have my annual MRI, simply because the thought of the results is horrendous. 

I was given the all clear 2 years ago and last year I was told my lymph node was swollen. All of 2018 I was back and forth having MRI scans to be told the same thing. The doctor checked with the radiographer, who checks the scans and he thought everything was okay but for some reason my doctor kept making go back. It was awful and I am traumatised, it was cruel.  This is why I can't and won't go back. I feel okay. I get the odd occasional pain but who doesn't?.

Personally, I think if you're given the all clear,.one shouldn't have to go back and forth. Please don't get me started on all the operations and procedures. It's not the building, it's the awful and life changing possibilities which I have been through and I cannot repeat. It was gruelling and traumatic. I won't go to the Maggie centre as it is cancer based and I want something which is not based around cancer. Enough is enough.

Anyway, thank you all,

Lisa

Dave 46
Posted by
  • I too suffer with PTSD – I was told I had this after getting stage 4 penile cancer – I lost my entire penis and various nodes , had chemo and radio etc. It was a close thing and mortality was not far away. I am now 5 years clear and discharged but still haunted by the memories, the words, the smells. They come back and fill my mind in times of peace and also times of stress . The latter being being harder to deal with as you have the issue currently concerning you plus the ptsd jumping on board. I do also catastrophize everything – so simple things like locking a door become OMG what if I did not do correctly we will be robbed. Yet other things have little effect on my daily life. Its very complex and despite having had 40 sessions with an expert the trauma and hauntings are still very real. Everywhere I look there seem to be triggers, the physical scars and obvious missing bit I cannot change, but the only time I can really relax is when I remove all other possible triggers which basically boils down to holidays when we are away.

    As much as I try to get on with things it’s a constant battle with the demons.

    Total get not being able to go to the hospital – I have places away from hospitals that I cannot face and people , friends , I can no longer talk too. Silly things frighten the life out of me. A noise , a worry , a thought.
    Kind regards

Modeknit
Posted by

Oh, sweetie, I am SO sorry for all that you're going through!

I have no great words of wisdom or solace, all I can say is that you're not alone on your trip.  I wish there were something more concrete I could do than commiserate!

42 years is a long time to create a reality that involves cancer, I can see how you are filled with trauma and stress.  Do you have a good therapist that you trust?

Best,
Annie
Minnesota, USA
LisaCardiff
Posted by

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

Dave 46
Posted by

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 

Cazza169
Posted by

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.

Cazza 
Dave 46
Posted by

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.

LisaCardiff
Posted by

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

Dave 46
Posted by

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.