Needing help navigating post treatment

Cervical cancer experience

*as of today, May 19th, I’m now a week and three days out.
Ive got a small mini update. The nausea has gone down quite a bit. Not all the way gone by any means. Still have a dull thudding, burning pain in pelvic area and a hard time finding an appetite. Ive started protein shakes and daily multivitamins in hopes of helping my body heal up some. Bowel issues still present but not as severe. Have reached out to try to get some professional mental help as i feel so defeated with my body. My doctors said most work through treatment and go back to work right after. Ive been so sick i haven’t been qble to move much since this began 2 to 3 months ago. Has anyone else been in a similar position as mine? I feel alone…

I am a 29 year old female, and I just completed internal and external radiation and chemotherapy four days ago. My journey has been a long and hard one so far. I’m wondering if I write this out maybe someone out there can relate to my journey or have wise words of advice to give me in order to try coping. I’ll start at the part of starting to chemo/radiation. For the first month or little over month I went every day for the beginning stage which for me was the external radiation every day for 5 days. At the end of the 5 days would be my chemo/radiation day. The external radiation machine would spin around my body making quiet zapping noises. For the most part the actual pain from the machine radiation me wasn’t a thing, it just soun around. Now the after effects have been absolutely terrible since beginning this. Please understand a ton of eople get through this with minimal to no side effects. I’m purely speaking from my experience. I’ve been severely ill since the beginning. Nausea, vomiting, diarrhea, pelvic pain, burning feeling, restless legs and insomnia. I thought I couldn’t feel any worse and was I wrong… I got a week break from treatment and then it was time to start the internal radiation… I had 4 rounds total, each “session” was 2 rounds total. I was given an epidural and put under anesthesia. One moment I was in a strange room with strange people starring at me the next i was waking up in another room but screamingin pain. I couldnt feel the left side of my body, but let me tell you, i felt the right side. For whatever reason the epidural (during both rounds) mainly numbed my entire left side but left feeling in my right. They had to strap my legs down for fear of me ripping out their device that was inserted in to my cervix via needles and also anchored to the bed externally. They kept on the epidural until late the next day because they still had one more session the following day. As far as symptoms or after effects the all remained the same no matter the drug my doctors prescribed for me. What can I say I think my body hates me. So I’m almost a week out still dealing with worse symptoms then when it began. I’m feeling so so so alone even though I am not, I i have my mom, sister, family and friends. Still i feel alone . I’m miserable every second I am awake and feeling like I’m never going to get better. Does it get better? Will i get relief? Thats my story so far ill try to update if i have impro ement. I hope everyone gets better if youre going through this. I hope you smile and feel better!. .

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Hi, I didn’t want to read and run. Bless you this sounds like you’ve had a tough time of it. Was the doctor joking that people work through this and then straight after?
I’m at the start of my journey, I’ll be starting chemo radiotherapy next month.
I hope you do start to feel better soon and that you get some positive replies and post treatment advice x

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Thank you for writing about your experience with such clarity and bravery. All the little moments are very difficult and it is such an enormous challenge to get through the treatment for many, especially the emotional, psychological toll it takes. I think I just rested & cried/tried not to cry for like 3 weeks after my treatment ended. But as I get stronger, my body & my emotions are starting to heal in very clear ways. I think the whole month after treatment, just write it off, rest, just eat your favorite foods& allow yourself the time it takes to heal, you will get better :sunny:

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My absolute best wishes for you on this journey. I dont mean to frighten anyone starting this, my doctors told me that women dont normally have this hard of a time. So im hoping that holds true for others. I dont wish the rougher road (or this road at all) for anyone. I wish they were joking when they told me that most are able to continue work throughout treatment and following brachytherapy.
I am still very fresh out so im trying to find the positive and remind myself to not be so harsh on my revocery. Thank you for taking the time to respond to my post, i appreciate it.

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Thank you for taking the time to reply! Thank you for telling me you took some time to heal up after treatment wrapped up. I felt like i was failing because i didnt hold up to my doctors “what most women experience, expectations”. I have noticed a few small improvements, which are better then none for sure! Crying and trying not to cry have been very present for me as well. I hope you are doing much, much better, and on the way to a full recovery!

It does get better. You are such a trooper having gone through this harsh and traumatizing treatment I’m so sorry you are feeling rubbish, but I promise it does get better

And you are not alone , but I know the feeling all to well. It takes to mourn and heal and become the new person you are without you choosing to be a new person.

Be gentle, cry, sleep, eat, read, mourn but most of all be proud, you did it! You went through hell and back and you are still standing. Bent, but not broken.

Hugs :heart::rose:

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I have read, and reread your response more then once. Especially the part about mourning to become the new me i didnt even choose to become. It resonated with me. Thank you so much! You’re right, bent but not broken :heartpulse:. Im grateful to of found this forum and have the support and wise/kind words from you gals. I hope you’re doing well and have either recovered or are well on the road to recovery!

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First of all, you’re very brave to write these experiences and I wish you a smooth recovery from now on and continous healing. I’m nearly 18 months post treatment and I’m still trying to make peace with menopause and other side effects from the treatment, although I consider myself lucky because I don’t have any life altering ones. I still feel lonely sometimes, I feel triggered by people’s questions which make me relive my diagnosis moment and their opinions on what I should eat and how I should use natural remedies. Sometimes I’m screaming on the inside. But on the other side, I feel grattitude nearly every second of my life, it took me quite a while but now I think it’s become like second nature. I was a very cynic pessimistic, workaholic person and now I find myself thinking and talking like I’m in a rom-com. So there’s that! It’s a hard journey, but I do hope at the end we’ll get to know and love ourselves more!

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Thank you for your kind words and worss of wisdom! Thats amazing (even on days when it doesnt feel amazing) 18 months is a big feat! I hope the remaining symptoms subside for you, sooner vs later. My body is a confusing matter to me. The main issues eight now seem to be bowel issues, appetite issues, severe pelvic pain, insomnia/nightmares when i do get to sleep, and emotional distress. I think i fall more on the pessimistic aide and im trying not to. Im trying to cling on to the kind words and reminders to take it easy. The words telling me it will get better. Again thank you for yaking the time to read and reply, i genuinely appreciate it :heart:

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Hi @Greene058
I just wanted to reassure you that there are plenty of us that don’t sail through treatment! Your doctors sound very uncaring! Do you have a cns nurse you can speak to?
I had side effects, allergic reactions and ended up in hospital, we are all different and there is no way I could of worked through treatment, by the end of it I couldn’t even care for my toddler son! Then when it finished I assumed I would instantly start to feel better but actually the effects of radiation peak 2 weeks after you finish, so don’t be hard on yourself, put your feet up have some you time and remember your not alone! Xx

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Hello @Gizzy

Oh wow! No, my doctors have only ever said in so many words that most sail through treatment with minimal negative side effects. So when i reacted so poorly ive been shocked and extremely down. I knew the possible effects but i figured they wouldnt be “that bad”. Oh how very, very wrong i was.

Thank you for taking the time to respond to me and reassure me that Im not the only one to have had this hard of a time getting through treatment. What is a cns nurse? I dont think i have one but i did try calling up there today to express some concerns and ask a few questions. I got forwarded to a voice-mail and have been waiting for a call back since early this morning. I also did not know that the side effects peak 2 weeks after finishing. Tomorrow will be my official 2 week mark.

I am so sorry that you experienced such a horrible time during and after your treatment! And again thank you for sharing your experience with me. This forum is the only thing that has given me glimmers of hope truly. :heart:

You’re welcome, I have found this forum a great help too.
A Cns nurse is a cancer nurse specialist, usually you get given their details and number when you are told you have cancer, they specialise in the type of cancer you have and are there to help you and answer any questions you might have, mine has been wonderful, it would be worth asking your hospital for their details as they are in your side!

I have had many times when I thought I was the only one experiencing things but if you search the forum you will many others have been where you are now! Xx

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How are you doing now Greene058?

Wishing you well :heart:

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@Lovewinz

My nausea has calmed down, it is no where near as bad as it was for the past few months. My restless legs have gone away but have been replaced with wicked nightmares. Im not sure which i prefer lol. The funny taste all foods gave off during treatment has all but gone away. Foods are tasting more and more normal daily. As far as eating, it seems i have to force feed myself as i have zero appetite. Fatigue and pain in my pelvic area are still very present… Ive been calling my doctors office but i feel blown off and dismissed when i have questions or concerns. I go back on the 19th of next month to get a pet scan to see if the last brachytherapy worked, if the tumor is gone or still there.
Im doing my best to keep a positive mind but i still feel alone for the most part, aside from talking to you ladies. Thank you for coming back around and checking in, that means a lot :heart:.

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@Gizzy

Honestly im not even sure if i have a CNS, ive had to call my brachytherapy nurse with any questions ive had so far. Shes been on vacation this week so ive had to call and they foreard my message on to my doctor and have a random nurse call me back. I feel just dismissed and thrown under the rug almost with the cancer “team” ive had. Someone should be calling me back today so i intend on asking about the CNS.

I hate that others have had as hard of a time as i have. I wish that on no one. It does give me a little hope in a weird way knowing i wasnt the onlyyy one thats experienced or experiencing this.

Take care :heart:

You and I have the PET scan same week!

Let’s stay in touch on this, I know we will both be nervous. My Dr pushed out my first post treatment scan to 4 months I think because of my tumor type.

Keep calling your Drs office— I know it feels awful but it’s important to make sure your concerns are heard and noted. I’m glad it’s getting a bit better. Still very early days, I think by the time of your PET you may be feeling a lot better physically :sunny:

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@Lovewinz

Oh we do we really? How has this journey been for you? How are you feeling now a days?My apologies for not asking that sooner! Sometimes (especially lately) ive been in a bad habit of being self centered :woman_facepalming:t3:. Yes, i would love to stay in touch! Keep each other updated along the way :heart:.

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Oh, no worries at all!

You are feeling low still and so it’s right to be self-focused.

I’ve been lucky—pretty much 1 month after brachy I started to feel amazing. The first month though was very difficult. I could barely walk from my car into an adjacent building but for the past two months I’ve been hiking 5 (hilly!) miles most days, working a ton, running around with extremely busy days and I’m able to keep up and feel well. I’ve been taking daily aspirin, vitamin B complex, Vitamin D & DIM so some of that may be helping with my energy as well. I absolutely did not push myself at al for the first month post treatment. I did no exercise at all during that time or during treatment. I did push myself though after my 1 month post brachy check up because at that time I realized I was in danger of just remaining immobile which is pretty bad for cancer recovery in general. I started with walks around my neighborhood and actually within a week I was able to push myself to a 5 mile walk. After that, there was no looking back :sparkles::sunny:

I think I’m emphasizing activity so much because I feel it’s been key to my current state of calm and happiness. Before I started moving I spent way too much time “researching” my situation and getting more & more scared. That’s okay, it’s normal to fall into that and to feel completely overwhelmed after treatment. The important thing is to know when it’s time to nudge yourself into regular life again. When your blood work starts to bounce back is typically a good time for that.

All that said, now that my first scan is coming up in a few weeks, I am getting a little nervous. I have Adenocarcinoma, the tumor was big & was still present after brachy (based on internal exam only) so who knows what will happen, right? :crossed_fingers:

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@Lovewinz

You’re so strong!! Im still in the first month phase (a few days past the 2 week mark now) so I think ill follow suit and be easy until my appointment next month. For the most part days are spent laying around, or curled up in a ball. I am pushing myself in small ways but nothing drastic.
Im hoping to get lucky and feel much better, like you, after that one month period. Hmm i need to look into those vitamins, my energy and stamina are almost nonexistent! Ive been taking a daily multivitamin and eating probiotic yogurt. I love hearing how far you’ve come since treatment, thats truky amazing and I’m happy for you! Gives me more hope!
I was wondering, did you experience bad pelvic pain during and after treatment? And if so does that go away…? The only thing that soothes the pain is the pain medicine they gave. Ive tried no medicine and ive tried otc asprins, both failed and the pain was awful. I dont want to rely on pain medicine to get me through the days feeling halfway normal.

I too am getting nervous for the appointment in a few weeks. Crossing my fingers the tumor is gone but terrified to hear the results. Trying not to let our minds wander to a negative space is tricky eh? I will be here and checking in on this forum. Feel free to either keep in touch and talk either through this thread or in a private message :heart:.
Sending my best wishes for the best news for you once appointment time rolls around :heart: .

Thank you! I am strong & so are you & everyone else on here.

Let’s totally keep in touch, I’m sure I’ll be messaging you as the date approaches…!

I didn’t have pain after a couple of days into the external radiation but a lot of people do have pain for various reasons, try not to worry—we will have some answers soon and the hardest part is not knowing, I think.

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