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Life After Cancer: Do you feel prepared for it?
In June of 2021, I was diagnosed with a rare cancer called esthesioneuroblastoma. I went through three different surgeries and 30 rounds of radiation. Before my surgeries, I was prepared for what I should expect from each surgeon that was a part of my team. I was prepared for what recovery would be like and what changes I could expect. Before radiation, I was prepared for the possible side effects and what to expect during treatment. The one thing that no one prepared me for was life after cancer. I think those of us that are inexperienced may have an idealistic view of what things are like once the surgeries, the radiation, the chemo, and the healing are all over. I know I certainly did. When things were painful or I was heading into another surgery or I developed radiation burns, I held onto the hope that once I got over these hurdles things would return to normal. Once I was healed from all surgeries and completed my last radiation treatment I was told to expect 6 to 8 weeks of healing time and then life would be normal again. Unfortunately, that just isn't the case. My last radiation treatment was in early November and things are far from normal. The 6 to 8 week timeline wasn't even close. I wasn't prepared for everything that has happened since treatment ended. By the 8th week of my "recovery" I was developing entirely new symptoms and dealing with old side effects that had once resolved but for whatever reason were returning. We are now 17 weeks out and I am experiencing extreme facial/neck swelling. I find eating difficult because I have internal swelling in my throat from radiation. I have to flush my sinuses multiple times per day which I will likely have to do for the rest of my life. I wake up every morning unable to swallow because of the swelling in my throat and what I assume is drainage from the sinuses. I've only recently returned to work after being on leave of absence for 8 months and have already had to call out one day because my swelling was so severe when I woke up that I could barely open my eyes. Sometimes the swelling even spreads to my arms, chest, and back which makes mobility not only difficult but also painful. As if I need more pain on top of the pain I already experience daily from my sinuses and the facial/neck swelling. I didn't experience any of this swelling during treatment, but now that it has ended I am swollen every single day. I avoid social gatherings during which it would be strange for me to wear a mask. I do not look into mirrors if they can be avoided. This isn't what I thought was waiting for me on the other side of the surgeries and the treatments. I've consulted my doctors. I've tried different treatments and therapies to help resolve my current problems. No one seems able to help me or even fully figure out what is going on now. I know I can't be the only person that has gone through this, but I feel absolutely isolated. I don't feel like I've conquered this disease. I feel absolutely defeated. And no one prepared me for the fact that life after these hurdles might not look like it used to.
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Getting out of bed as an active chemo patient is an ENORMOUS achievement! I often fail at this, but when I am hurt or offended by someone's thoughtless (in my opinion) comments, I try to remember that their words are really about them: their fears, their discomfort, their denial, even. I don't need to do anything about it, either, but let it go. Much easier said than done. Wishing you the best during this challenging time.
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5 ReactionsI am so glad that i came upon this discussion! @jessskoldal you have said everything I’m thinking! Will I ever get my life back, or, at least, some part of it? I have an autoimmune disease, not cancer, that left lesions on my brain. When the doctor told me that all the lesions were gone, i almost felt indifferent. Lesions were gone, but so was my life as I knew it. Guess I’ll just get up everyday and try, try, try.
Just wondering, what is the most difficult thing you’ve had to deal with “post cancer?”
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3 ReactionsI currently have emotional and physical struggles that plague me daily. Emotionally, the most difficult I deal with is learning to cope with losing my sense of smell. The surgeons removed all the nerves responsible for smell so I’ll never get that back. Realistically I know it’s trivial in the grand scheme of things, but prior to surgery I was such an avid user of candles, aroma therapy, incense…I just miss that so much.
Physically my biggest struggle is the swelling of my face and neck. On bad days the swelling goes into my arms, chest, and back. The swelling limits my mobility and at best is uncomfortable, but more often than not it’s downright painful. I’ve tried every treatment and every therapy or exercise suggested and nothing helps. I have no idea why it gets worse or why sometimes it will improve. Even when it improves if never fully goes away. Being in pain and being uncomfortable all the time wears me down physically. It also impacts me emotionally. I don’t recognize the face in the mirror. I typically just avoid mirrors now when possible.
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2 Reactions@jessskoldal Has your medical team been able to give you any insight on dealing with the residual swelling on neck and face? Is it perhaps from the radiation aftereffects, do you think?
I found an article about lymphodema, that may hold some answers for you! It was interesting to read, and offered me some ideas, too. It is from University of Pennnsylvania. Would you take a look at it, and see if a few of your concerns may be addressed, there?
https://www.oncolink.org/cancers/head-and-neck/head-and-neck-cancer-survivorship/lymphedema-after-head-and-neck-cancer
Ginger
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2 ReactionsGetting out of bed. Some days it feels like it’s just going to be more of the same, so why bother. Those days require an extra effort to be grateful I CAN get out of bed, even if I’m still sleeping 12-14 hours. My favorite saying is “You can’t control what happens in your life, only your attitude about it.” Even when it’s hard, keep looking for those good things in life. Number one, you are alive.
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2 ReactionsSo far all they've said is that they believe it to be side effects from the radiation. An "inflammatory response" is the term my doctor uses. They've recommended a few therapies that are used for lymphedema, but they don't seem to think that's what it actually is. The last time I spoke to my oncologist (about a month ago) he said he believes it'll be another 2 to 6 months before this resolves. Considering I was originally told 6 to 8 weeks, I don't know if I trust that timeline. Thank you for the resource. I will definitely take a look at it and see if it offers any insight or advice that I can use.
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2 ReactionsThis is very good advise, I have been positive and optimistic, get diagnosed, tell only select family, go into chemo with great family support. Make it to surgery day, recover then on to radiation - “I got this” attitude. Then Chemo and reconstruction. Finally back to Normal!
I am going to re think “normal” to positively moving “forward” life will be a new normal for me and I have to anticipate this.
Thank you ladies for opening my eyes early, still in radiation phase as preventative. Surgery was successful.
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7 Reactions@boathouse Being positive and optimistic, facing realities with grace and acceptance, can sometimes be a struggle. Our normal becomes a "new normal", and that's okay! Having a support team who "gets you" is critical, for both you and them.
Congratulations on your successful surgery.
Ginger
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3 ReactionsHave the doctors considered steroids for your swelling? I was on steroids for a month (large doses) to resolve radiation related swelling and inflammation. It worked and even before it cleared up, things became much better.
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