I think I've got a bit of PTSD

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Hi, I'm Ruby I'm 21 and i was diagnosed with ALL when I was 19. I was at uni when i was diagnosed and had to take a year out and move back to my home town to have my intensive treatment, I am now deep into my maintenance part of treatment so i've been able to return to some what of a normal life.

I've returned back to uni and was living in Liverpool (the city where I chose to study)  but i've had to return back home again due to the covid risks. 

I can't even say that the mental issues I'm having started when i came back home again because I was still experiencing them even whilst I was living at uni.

However, I kept ignoring the feelings i was having as I felt silly and ungrateful for having them. The whole way through treatment all i wanted was to be back living independently , studying in the city that I loved. But when I went back, as happy as I was , I was a different person and everything that I went through and experienced played on my mind 24/7. 

I also found that it was difficult connecting to my peers, i felt isolated away even when i was around people and i felt that even my closest friends, didn't quite understand what i'd been through or what I was still going through! 

Since returning home it seems to have got a little worse, having to go to the ward where I spent most of my darkest time for treatment and blood tests ( even though i love my ward and the nurses, its still painful).  I can understand that as its bound to bring back uncomfortable memories however even when I'm not there I get "trigged" by random things like the smell of bleach, or seeing old photographs of myself, being back in my bedroom, certain objects and even sometimes hugging my parents will put me in that head space again. 

I have experienced a lot with treatment, and I also lost friends from the ward. There's one who I was close with and who shared a similar cancer to me. i was devastated when he passed and i feel its affected me more than i show people. 

I constantly think about him, how he would of been if he had survived it, all the things he will never get to do, the pain that his family is going through, where he's gone?, his final moments, why i was allowed to survive and he wasn't. Its gotten to a point where its the first thing i think about when i wake up and i feel quite a strong wave of guilt every-time i think of him. He was the loviest person and would in no way want me to feel like this but I'm struggling to reason with myself. 

I think about my cancer an awful lot, hundreds of times a day. I'm actually getting fed up with myself because its like an obsession and i think people are fed up of hearing me talk about it.

I also feel myself withdrawing from people, avoiding messages and phone calls, making excuses. And i don't know why because i know that talking to them would make me feel better but i just can't do it. I have a loving , supportive family who i know i can talk to about anything but i haven't been able to bring myself to do it. 

I only cried to my mum for 5 mins in private on christmas day, after we watched a video of us last christmas and i looked desperately ill in it and it set me off. But even then I pushed it back down and didn't discuss it anymore as i felt it wasn't the right time. 

Im sorry for the rant I'm just feeling a bit lost and frustrated at myself and wanted some advice on what others do to deal with these feelings? Or what language you use to speak to yourself when your having feelings of guilt or your stuck in a nasty memory. 

Hope you are all doing okay! xx

  • Hello RubyJean, I just read your post and found it very moving. I wanted to respond and say I hear you. What a lot you have been through at such a young age. And what a lot you are still going through. I’m not an expert at all, but it really does sound like a kind of PTSD. And no wonder. You’ve had so much pain and trauma and disruption to your life and you haven’t had the time to process it all. You say you know that talking would help but that you just can’t bring yourself to do it. Yet? Be patient with yourself and perhaps the time will seem right. Myself, I do have people I talk to. I ‘recruited’ a couple of friends - one I write my feelings to in a weekly email, and another one I have a WhatsApp video with once or twice a week. And I’m having a weekly counselling session on Zoom too, which helps me a lot. Even surrounded by loving family and fiends, we can feel very very alone with our cancer journey. I’m so sorry to hear that you do too. I hope you get some more helpful responses than mine on this forum. I haven’t been through half of what you have. There are lots of caring people here who really understand. Be kind and patient with yourself. Hugs, 

    JWOGreen heart

    JWO Green heart

  • Hi

    Your post brought back a lot of memories for me that i had following my treatment for ALL in 2012 /13. I ended up having a stem cell transplant which has done the trick for me.

    I think whilst you are going through the treatment you become very focussed on getting on with it and dealing with one day at a time. I lost people on the ward as well. It isn't easy as I was grateful that I was still alive but also guilty that I had survived and they didn't. Over time this became easier as the grief and guilt passed.

    In the early days after my treatment I felt that i had to tell everyone I met what had happened to me.. almost blurt it out! Gradually I spoke about it less and less.. It was a natural process rather than me changing anything. Now I don't mention it if I meet anyone as I feel it isn't relevant to who I am. It may come up in conversation if it is relevant further down the line but that's ok.

    Smells and being transported back to the hospital I still get occasionally. There is a particular deodorant that if I accidently buy it sends me straight back to the hospital bathroom! I threw all my clothes, washbags etc away when I finished my treatment.

    For a while if I struggled I would go and sit in the courtyard at Barts in my lunch break during the summer by the fountain. It made me feel me feel safe although all I wanted to do when I was a patient was get out and go home. I guess I was institutionalised from long stays.

    So yes I can relate to how you are feeling.. it does get easier with time. You have been through a very traumatic time so don't feel bad about how you sometimes feel. Counselling may help so you can talk about it all without the worry of how your family feel about what you are saying. 

    Paul

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  • Hi RubyJean! 

    I'm actually currently being treated in Liverpool for ALL. I have just commenced consolidation (although they are still waiting for my MRD to come back as the last one was inconclusive). I completely understand what you mean, in particular your feelings about the wards and what your feeling.

    I feel sick at the thought of going back to being an inpatient (I practically begged to be an outpatient for consolidation and have been told I can as long as I have no complications.... which will be a miracle) I sent a lot of pictures to my friends whilst in hospital and always find myself having to delete them when I come home. I find the smell of hand gel or cleaning products also makes me have a tiny flashback. I'm lucky in that the day ward I attend as an outpatient is on a completely separate floor and has nothing but pleasant memories attached to it.

    I have been diagnosed and treated during COVID and just missed out on the TYA ward so have not been lucky enough to make any friends of the other patients. However I have been quite lucky side effects wise and often feel guilty for complaining about anything when others have it worse. As far as thinking others are fed up of hearing about it, I'm sure they are happy to help but I have found it to be a bit of a struggle to know what else to tell people about when cancer treatment has almost become my life, but my friends and family constantly reassure me that they prefer I tell them about what is on my mind rather than keep it in. Some have even told me during these times when they are unable to do much for me due to COVID me telling them my worries makes them feel useful.

    When I was an inpatient struggling mentally, they referred me to their psychologist, however she really wasn't for me. After this they referred me to Maggie's Charity, which does sessions via zoom, this might be worth a try as I'm sure they'll be able to give you coping techniques or any necessary referrals. Maggies also has groups and sessions you can attend at their centers (you can get your closest one on their website, if you come back to Liverpool our closest one is on the Clatterbridge site in the Wirral) this will help you meet people who have been through similar experiences. With Maggies centres you can even just walk in and have a chat with whoever you want. Liverpool also has sunflowers (if you wanted to return) which also has counselling services and similar walk in services. Have you heard of Trekstock? This is another charity which specializes in young adults. 

    I find it really hard to pull myself out of negative thoughts and don't think there really is a one size fits all method, although that would be so much easier!!! I do think talking about these feelings will help you out as I find keeping them in takes me to the point where I'm frustrated and anything will make me cry. Don't hesitate to take advantage of the people on here too! Sometimes speaking to people you don't know as well is easier! 

    Diagnosed July 2020 with Acute Lymphoblastic Leukaemia

    Started UKALL14 0.1% refractory disease noted after consolidation on MRD

    Started Blinatumomab August 2021and achieved MRD negative

    Disease escaped bone marrow and went to breast

    Due to have FLAG-IDA then onto stem cell transplant

    Nbk112