Sometimes it is lonely – Guest Post

Here is the second beautiful essay by inflammatory breast cancer blogger, Ashley at Ashley: Warrior Mom

Sometimes it is lonely

and you can’t really tell anyone. Sometimes you can’t really even call another survivor/fighter/warrior/thriver, sometimes you just have to cry and be scared. And by crying I mean the kind of body wracking sobs that hit you when you lose someone you love and you just don’t know which way is up.

No it isn’t pretty and I’m not looking for a bunch of “It will be fine” and “You’ll make it” and all the meant to be comforting comments that people make. The truth of it is that it isn’t fine. The truth of it is that you get scared, you get angry, you fall apart. Then you pick up and get on with it.

You get jealous too. Yes friends, sometimes I get SO jealous of you that I can’t see. Sometimes I want to just scream. It doesn’t mean I don’t love you, it doesn’t mean I don’t want to be around you but sometimes I wish I was like you and I didn’t have this. I’ve only ever really gotten upset with one person that I can think of over something that they were complaining about and I didn’t even tell them.

I don’t want to be afraid that I’m not going to get to watch my kids grow up. I want to see my kids get married, I want to meet my grandchildren. I don’t want to walk around worried that this thing inside me is growing. I don’t want to feel like I have to go do everything RIGHT NOW because I might not get the chance later. I don’t want to wonder if my kids will have to hold onto the memories we make right now with everything they have because they are afraid I won’t be around. I don’t want everything colored by this but the truth is that it is. Every once in awhile I manage to not think about it for maybe an hour or two but it comes back and sometimes it is just like a kick in the gut.

Yes I know that any of us could die at any moment, a freak heart attack, a car accident, a fall, any number of things could happen but most people don’t actually think about it every day. A lot of people that I know do think about it every day. Most moms aren’t trying to make sure their spouse can handle it without them.

Even calling another survivor is sometimes tough because even though they know exactly how you feel and they can completely empathize, they want to make you feel better. Sometimes it is because seeing you fall apart reminds them that we are all vulnerable and scared and they may not be in that place. Sometimes you don’t want to call them because you don’t want to bring them to where you are. But we still invite each other to call and we want to be there for each other and I do want my friends to call me when they feel like this but I’m sure they don’t always. Because I don’t always.

I don’t want anyone to feel sorry for me. Sometimes it is just so overwhelmingly scary and I share the bad with the good.

I try not to worry. I read a great line in a book recently, it went something like, worrying isn’t going to add any time to your life. It isn’t. Being scared isn’t either but I’m human and I’m a mom and I have an aggressive stage iv cancer.

There are a lot of people dealing with this. I know a lot of women who deal with this and still… sometimes it is lonely and tonight I’m scared.

~ Ashley: Warrior Mom

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

Comments

Sometimes it is lonely – Guest Post — 8 Comments

  1. Ashley, if I asked you could you give me one good reason why you would not be scared? Having lived with this disease for so many years myself I think I am just plain numb. If only I had some words of wisdom to offer; something to ease the load. I’m sorry. I don’t. Please know that you are in my thoughts.

  2. Ashley thank you for your raw honesty. I, and so many others get it. Thank you for putting your voice to the truth that lurks in anyone who has known a cancer diagnosis. This IS our reality.

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  4. So totally agree with everything you have said. I’m another IBCer. I must admit that is what I love about blogging. You can write down the fear, the loneliness, the frustration and it helps you process it but also lets those around you see the real face of cancer. The face we presewnt to the world in person is often not the one we see in the mirror of our blogs

  5. Thank you for sharing, you wrote the words that many of us feel….iM in Ned but every four mos, that blood work brings up the fears that never leave, but fade with each good report, thinking of you and hope your fears begin to fade too!

  6. Wow! Although I’m living with a different type of cancer in my body, I echo and understand everything you wrote. Sometimes you just need to be overwhelmingly sad and it can be easier to do it alone.

  7. Thanks so much for your beautiful post. I think it captured much of what I feel. I am fortunate to have a great support system but all too often the people around me try to “cheer me up” when I really just need someone to listen. I guess the relative anonymity of a forum such as this provides that. Most days I feel reasonably good – except for a red, sore, ugly, lumpy right breast. I’m still on neoadjuvant chemo and am really looking forward to the day when I’m declared ready for surgery. I teach and have been able to handle that ok since last October when this all began but now, with my current chemo – Gemzar and Paraplatin – I am profoundly tired. In many ways, working is really a good thing to keep doing. When I’m at work, it’s all about my students and I can put my fears and even my physical pain aside. Also, my colleagues are truly wonderful and if I quit working, I would have much less contact with them. My husband is a great support, but he himself is trying to continue working while taking my up to Fox Chase it seems every time we turn around (it actually has been around once a week – an hour and a half drive – ever since late last October.)
    I think it’s important to try to stay as positive as possible but I also believe that it is helpful to confront and acknowledge our fears, frustration, and even anger. None of us asked for this but now we have it and must deal with it. Your wonderful blog made me feel at bit less alone.

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