During treatment you’re offered advice on how to cope. You’re given phone numbers, access to help, opportunities to visit the resident councillor in the hospital.

People mean well, they try to help you. Educational information is offered to you and in fact just about every form of support is offered.

What you’re not told is that after cancer new challenges can arise. No one prepares you for life after cancer.

In my last blog post talking about full remission I mentioned this. Cancer PTSD. Post-traumatic stress disorder.

I’m following up and I’m going into this in a little more depth. It is real and it affects a lot of people who have cancer and who have survived cancer.

To be fair maybe not everyone is affected by it. I can only talk from personal experience and from what I’ve discussed with other cancer survivors. As well as what I’ve read in books, other peoples blog posts, social media posts, etc.

Maybe the PTSD varies depending on what type of cancer you’ve had, how long you had it for, how you coped with the process of it and the treatment you went through. In fact for a lot of people the PTSD starts while they still have cancer, maybe even from the day of diagnosis. Everybody is different and everybody is affected differently by this terrible disease.

I also understand that PTSD doesn’t just affect people touched by cancer. It is prevalent in all walks of life. I don’t want to take away from any of that but I can only talk about this from a point of view that I understand. An experience that I have lived.

When the chemo and other treatments end you don’t just go back to normal life. Whatever normal life is. First you have a PET scan and then wait anxiously for your results. That takes a few weeks. It consumes your mind. Am I in full remission, or am I not? What happens if I’m not? What happens if I am? Has this all been for nothing? It does mess with your head a little bit.

Then, in my case, you get told the good news. Then nothing.

You get told you’ll have a check up every three months, and you get given a phone number to call if you think anything is wrong. That’s it.

You’re left to your own devices. No physical aftercare, no emotional aftercare, no more support.

That also applies to a lot of people you know. Not everyone I might add, but a lot.

They think you’re cured and it’s all over. Back to so called normal life. Just pick up where you left off and get on with it.

Except you’re not cured, you’re in full remission. It’s different.

Life is never the same again. You have to adjust to being back in life. You have to recover from chemo, from the cancer itself. Your body has to readjust, to heal. It takes time. A long time. I was told it would take at least six months. They weren’t joking at the hospital when they said that. My body is improving day by day and it is a lot better than it was six months ago. And a hell of a lot better than it was a year ago, but it still has its moments. The days when it’s really tired. The moments when it doesn’t feel normal. Those days and moments pass, but chemo has its side effects. Both long and short term. It messes with your head sometimes.

People wanted to celebrate. I get that. I get that a lot. I did too, but not in the way they wanted to. I didn’t want to go to the pub and get drunk. I gave up drinking when I got my cancer diagnosis. That was a big thing for me.

I started drinking alcohol regularly at the age of fifteen. I gave up at fifty-five. That’s forty years of drinking fairly regularly. I gave up for the good of my health. I gave up because I wanted to change my lifestyle after my cancer diagnosis. I’m fifty-eight now. I don’t intend to start again. Not yet anyway. I’m not one of those people who can have just one drink. Not yet. I know that about myself. I’m very honest with myself about that one.

So, no, I’m not going to the pub to get drunk to celebrate. I’m beginning to realise that some of my friendships were based around alcohol. That’s ok if that’s what you’re into, but I’m not anymore. I’m still me, just a different version of me. You can still talk to me, you can drink with me. I’ll just drink soda water. That’s the only difference.

You do question yourself though. Have I changed that much? Am I that different? Do people talk about that behind my back? They probably don’t, I’m not that important. But then maybe they do. All these questions and self-doubts mess with your head. Even if they’re irrational.

Then there are the bigger things that sometimes never seem to fall into place. Like talking about death to people who haven’t had to face it. When you’ve come face to face with death it’s huge. It makes you reevaluate everything. If you haven’t faced death like this you just won’t get it. That’s not a criticism of you because that would be unfair. But if you haven’t come close to death because of cancer you just can’t possibly know what that would be like. Just like I can’t possibly know what it would be like to be sitting in the mud facing death in a war zone. There are just some things in life that if you haven’t lived them you can’t possibly understand them.

It doesn’t mean you don’t want to talk about it, because at times you do. It’s just how it’s talked about. And sometimes people just gloss over it or avoid the issue completely. That can make you feel isolated sometimes. Especially when people instantly change the subject or blatantly say “let’s not talk about that”. These things affect you.

My normal is different now too. My new normal is better than the old normal I had before cancer. Life is more precious and I see it much more clearly. You might not notice that, but I do. I feel that life is more fleeting, has a sense of urgency, is there to be treasured and lived. That doesn’t mean that I have to rush around like a mad thing all the time trying to tick off a bucket list. Sometimes life can be vegetating in front of a movie or binging on Netflix. But I’m doing it because I want to do it not because I’m wasting my life. It’s about enjoying all those precious moments big or small.

Then again time will never move the same again. In my life after cancer when it goes past too fast I feel like I am losing it. That scares me. I feel like my life is disappearing. I didn’t beat cancer for it to disappear from beneath me. On the other hand when it drags, especially through hard times, I feel guilty for not appreciating it. For not enjoying the time I have and being grateful for those hard battles that aren’t cancer. The battles that aren’t going to kill me. Life will simply never be the same again.

Then there is the fear. That’s a big one. The fear that it will come back. They say mantle cell lymphoma is incurable, that it always comes back eventually. I intend for that not to happen, but it might. I say to people that it’s not happening. That I won’t allow it back in. But who am I fooling? Myself or you? Maybe both of us, maybe neither of us.

Life just doesn’t look the same once you know how fragile it is. That fear of the past can haunt you for the rest of your life. If you allow it to. But it doesn’t have to define you. You can face it, acknowledge it, understand it and take the power out of it. Life is there to be lived and fear doesn’t have to run it. I challenge the fear. I accept it and then move through it. Life can still be about risk taking, loving, enjoyment, just about anything you want it to be. I try not to let the fear haunt me. After all death comes to us all eventually. I just plan for that to not be for a long time yet.

Then there are the conversations that will probably have to be faced one day, with your loved ones. Conversations they, or you, might not want to have. Conversations around what happens if it does come back. How will we face it? How will I face it? I think about this. How would I tell my child, who is an adult now, that I’m not in remission anymore? That we have to go through it all again. Would my wife cope with that? My sister, my brother, my extended family and all my friends. How would I tell people here we go again? I think about these things sometimes and it messes with my head.

I even wander if I would have the strength to face it all over again. I tell myself I would. But would I? Could I go through all that again. Hopefully I’ll never have to face that one.

There’s the survivors guilt too. I survived, others haven’t. So maybe that’s another reason I don’t want to celebrate. I achieved full remission where others haven’t. People with cancer, who I’ve had contact with on my journey, even if only briefly have passed away. People who inspired me, people who gave me hope that I could live have passed away. Yet I’m still here. Is that fair? I am extremely grateful that I’m still alive and yes I celebrate a little. Yes, I mention to people that I’m in full remission. Yes, I put it on social media. But I also feel the need to be very humble about it. Not everyone makes it.

Then I feel guilty for feeling guilt. People who have passed away encouraged me to live. Inspired me to live. So maybe I should celebrate because it’s as much for them as it is for me. After all it’s so important that some of us survive. We should celebrate life.

It all get’s confusing and contradictory. I guess life can be like that.

I’ve been in full remission for just over five months and I’m still trying to get my head around it. Is that normal? I just don’t know. Nobody tells you any of this. They just expect you to get on with life. I am, just differently. Maybe I should join a support group? It would probably be a good idea but I haven’t felt ready to do that. Is that normal? I don’t even know what normal is anymore? Maybe normal never existed for anybody ever. Maybe it’s a human construct designed to keep us in a box. Be the norm, be in the box, do what society expects of you. If you don’t fit in the box, if you’re not societies normal then you’ll be ignored, glossed over, ostracised, criticised, and anything else that won’t allow the normal to be challenged.

Which leads me onto my last point which is talking about cancer. Asking questions about cancer. Well you can you know. You can talk about it and you can ask questions about it. And you don’t have to call it the big C. I really don’t like that term. It’s called cancer, ok. Deal with it. And yes it kills people, but it doesn’t kill everyone. Lot’s of us survive and we have stories to tell. So don’t you dare tell us we can’t talk about it. And the people who do pass away have loved ones who might want to talk about it.

So ask questions? Ask me questions. It’s not a taboo subject. I’m happy to talk about it and to answer questions. I also understand that not everyone who has, or had cancer, wants to talk about it. I respect that. It’s their choice. And you need to respect that too. You have a mouth, use it. Ask a person if they’re comfortable with talking about their diagnosis. They’ll appreciate that you asked. It’s much better to ask than ignore it completely.

Yes, there are days when I’m not in the mood to talk about it. But when it really comes down to it I’d like to help you with the facts. To help you understand so you can help someone else if you ever need to. That way you’ll know more about what to expect and what to do.

Also if you’re my friend, I’d like you to know me. To understand what I’ve been through. So don’t be afraid of me, to talk to me or to ask me questions. Otherwise I feel like I’m being ghosted. Cancer ghosting is real too. It makes you feel alone and abandoned.

One last thing. Don’t ever say you now know what it feels like to have cancer if you’ve never had it. That was said to me once. That person was put in their place pretty quick. You have no f’ing idea what it’s like to have cancer if you’ve never had it. So just don’t go there.

As you can see this subject makes me passionate at times. It makes me happy, sad, angry and all sorts of other emotions.

Cancer PTSD is a weird beast. I don’t think I fully understand it, but I’ve definitely had elements of it. Fortunately I had access to a good therapist which helped me a lot. Thank you Jayne if you’re reading this. You’re amazing.

The truth is everyone’s experience with cancer is different. The fact that we need to talk more about the struggles after cancer is important. It also means more people are surviving and are looking to thrive as their lives move forwards. So please don’t be afraid to talk about it and reach out if you need to. My door is always open.

Every Second Counts

Love, Jon