Lived Experience Forum

[Porcini]

I recently saw a psychiatrist for an ADHD evaluation and came away instead with a PTSD diagnosis. I'm not sure how I feel about this. The core of my trauma revolves around my diagnosis and treatment for Hodgkin's lymphoma. I've been in remission for years but I'm still avoidant to talk about that time and I have trouble remembering it as well. It seems I have many holes in my memory about other things too, which is why I was assessed for ADHD. I'm a mother of a toddler, a small business owner, and struggling to deal with my past trauma. I guess I'm just hoping to find some other cancer survivors who are dealing with the the same shit, years after treatment. 

[hanami]

Hi @Porcini 

Welcome to the forums, I'm so glad you found us and have had the courage to share your story. I can imagine the shock that you went for ADHD diagnosis and left with a PTSD diagnosis. That will likely take some adjustment in your mind. Having cancer such as yours must have been very traumatic so it's understandable it's still impacting you years later. My skin doctor found a melanoma on my arm a few years ago and I was in shock. It was a mole that had been there for years but had darkened and I didn't even notice. Anyway, she cut it off for me the next day and sent it off. Thankfully it was only surface level but I had such a moment of 'omg, that could have killed me'. All the scenarios went through my head like what if I had have had it checked. And now that I've had one melanoma the chances of another are higher than average. I am super fair with green/blue eyes. I really shouldn't be living in Australia lol. But here I am at 53 having skin checks every 6 months and panicking whenever I go out in the sun. I'm so paranoid about getting the tiniest bit of sun on me. So I can relate to your trauma even though my melanoma experience was over and out (literally) within a day. The thought of cancer is horrid. I hope others around here can also add their own experience for you.

Take care and I hope to see you around

Hanami

[FloatingFeather]

Hi @Porcini,

Welcome to the Forums. My name is FloatingFeather and I am one of the peer support workers at SANE. It is nice to have you with us.  

I'm really sorry to read what you have gone through. The trauma you would have gone through after your battle with Hodgkin's lymphoma is completely understandable. It is great to read you have been in remission for years but I can understand why you wouldn't want to talk about such a hard time in your life. I can also understand why anyone that has gone through what you have gone through could potentially be diagnosed with PTSD - I'm sure it was a lot both physically and mentally for you. 

I think the human memory can be amazing in the way it protects us. I have read somewhere that sometimes when the mind can't take on the stress because it can be too much the mind does have the ability to block things as a way to protect us.

It sounds like you have a lot going on with your toddler, your business and dealing with your past trauma. I really hope you are getting the professional support you need. I also hope other people who have been in similar situations as you respond because I think it's such an important conversation to have and to share with other people with similar lived experience would be really beneficial.

Warm wishes,

FloatingFeather 

[StuF]

Hi @Porcini 

Another cancer survivor here. Non-Hodgkin's for me. My Dr has never really said I'm in "remission" but in terms of 'cancer treatment' it has been a Long time.

Your avoidance of talking about it resonates with me. For me, if I'm talking about it I feel like I'm trying to get attention or something. But also, the details of treatment etc are not something for general conversation.

The thing that annoys me is that before every 6 monthly check-up with my haematologist I get my bloods done and assume the worst. Every little physical symptom that can't easily be explained, I think the worst...

I certainly don't run around broadcasting these thoughts and feelings. And I know them to be untrue, but it can be a bit of a mental battle that never really goes away...

Having schizoaffective disorder on top doesn't help!

Anyway, I've probably rambled enough. I don't know if my response is relevant to your experience, but thought I'd throw it out there in solidarity at least 🙂

[Bow]

@Porcini I had ovarian cancer some 15+yrs ago and a recurrence 2 years later. Thankfully I didn’t have to go through treatment, just surgery. But the diagnosis itself is difficult and traumatic, I can’t imagine what going through treatment is like and it’s no wonder you have PTSD from it. A lot of people suffer from medical trauma. I’ve had some traumatic experiences recently being in hospital. So I think it can be expected. 

I hope you have some supports around you. 

[greenpea]

@Porcini   hi i have ptsd amongst other things.  i also have holes in my memory.  i also have memories that come and go like the tide at the beach.  you are not alone.  i have not had cancer but schizoaffective disorder if that counts.  take good care of yourselfxx

[Porcini]

Thank you so much for the warm welcome!

[Porcini]

Thank you, I appreciate it. I'm seeking a psychologist currently as the psychiatrist who diagnosed me doesn't do therapy

[Porcini]

Yes! It feels like I'm fishing for sympathy or something when I talk about it. I hate that I feel that way. And I'm the same: every time I have to go into a hospital I feel intense dread

[Porcini]

The come-and-go memories also happen for me. It makes me worry I'm loosing my memories of good things too. It's very unnerving. Schizoaffective sounds really rough. I'm glad you're seeking help and community too.