EVA's Cancer Blog

Slow recovery very slow.. is it familiar?

Hello everyone, it has been a month since my treatement ended. After i came out of the hospital, 10 days ago it has been up and down.. some days are better than others.. yesterday i felt almost good, but today is the opposite.. fatigue, burning and stinging in the vaginal area.. mostly from inside.. the good news is the radiation dermatitis is healing but the skin is so so sensitive, feels very thin and sensitive to any touch of clothing..

i would like my energy back but it is so slow.. so slow.. and discouraging not to feel like myself.. how long this will last?

3 people sent you a hug.
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I'm sorry you are suffering so.
I would suggest to check thyroid, it helped me to take Rx for it, as chemo crashed mine. Of course, chemo in general, can ravage the whole body.
I wore boxers long after treatment, and had washable fleece pieces in bed for the target zone.
It does take a long time to recover energy, but your burns were extreme, and I hope you can be patient and do sitz baths, if not bathe the whole body; maybe some massage on a regular schedule.
Take care!
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Your story will be recognized by many! IT took me several months to really start feeling good...One Day At A Time, which is a pretty good motto for these strange times...Ask your team about thyroid as Easterly suggests, and make sure you are getting good protein in your diet. A Hug!
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Very much normal for this treatment.
I finished in July and didn't start feeling like myself until about October. I did end up with blood clots in my lungs and legs so that didn't help.
You will get there just know it's a journey not immediate.
Be good to yourself 🙂
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My oncologist warned me it would take a full year to feel like I had my energy back, and she was right. She also gave me good advice that I shouldn’t look at progress from day today or even week to week, but look back at a month ago and see how far I had come with my recovery. And you had a very difficult time with your treatment, so it’s going to be baby steps, but rest assured that you will feel better a month from now than you do today!
Eva, as others have said, your first few months after treatment are predictably a bit difficult. We’ve all been through that, but it does get better! Please try to hang in there and know that with care and rest you will get better. Do try to get into a regular cardio exercise program of some sort thought...it will make all the difference!
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Your story sounds so familiar, but I'm glad to hear that you are starting to heal. Are you taking anything to manage the pain? My doctors predicted that recovery was at least twice as long as treatment. So give yourself a good 12 weeks, at least. I ended my treatment at the end of February (2018) but could not do anything in March and April. By May, I felt better, and by July, I was back at work, and even went on vacation in August. You on your way to feeling so better! Yay!! :)
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Well, I feel so badly for you Eva, the suffering seems beyond bearable at times, at least it was for me. I had a rough time for definitely 6months After last treatment They say the radiation continues for that long after treatment ends and I surely felt that was right. The good news is that it continues to shrink any tumor still there, if any.

I honestly felt like death going thru txs. Especially starting maybe 3rd week in. There is no explaining to those who have not had our txs. What it's like, which is why this blog helped me so much.

I was still in a very rough time at the time schedule you are at now, so try not to expect too much yet, just eat the best you can, do whatever brings you laughter (I watched comedy shows), and don't expect much right now. Your body has been put thru Hell, and it takes time to climb back up.
The good news is you will get there, and you have us here to offer support as you make that slow, but upward climb.
Easterly likes this comment
It took awhile for me to start feeling better, but little things would improve along the way. Try to be patient with your body, it's been through a lot. Here's hoping EVERY day will be a good one for you real soon!
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I wholeheartedly agree with everyone’s post here. I finished my treatment in April of this lovely year and I’m Just starting to feel like my self again as far as my energy level. Obviously still dealing with am issues and the pain, but can see a big improvement. Take the best care of yourself possible, be gentle to yourself, .The hardest part is over, and you definitely had a tough go.
Take care!
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Hi Eva,
Day by day. Some days are more forgiving than others and everyone has different experiences. I would 'encourage' yourself to do a small act of fitness each day. That could be a walk around the backyard a couple of times or ten minutes of nonstop walking on a loop inside your house. My point is something physical everyday actually builds up your strength and stamina. I was also eating watercress and turmeric everyday, as these two have such amazing natural properties plus plenty of water. I'm so glad you're over the worst of it. Start planning for a dream vacation and have a goal to take it. Much love and hugs, Lisa
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Like you I had a really hard time with the treatments. I had to take a weeks break because I was so sick! I am 11+ years out now and praying that I stay good as well as praying for everyone here. It took me almost 2 years to get most of my energy back but I have never gotten back to my pre cancer self. This could also be from getting older lol but my mind doesn't want to hear that. Take care and you are doing great and it will only get better!
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Its so good to hear your triumph!!
Eva, like the others, it was months before I felt halfway decent. It probably doesn’t help you to hear about the time frames, but at least you know what you’re going through is not unexpected. I love Julie’s advice to not “...look at progress from day today or even week to week, but look back at a month ago and see how far I had come with my recovery...“ That approach will help you appreciate how incredibly far you’re going to go in this journey. And we’ll all be with you. Also, If you haven’t already, you may want to see a GYN regarding the stinging issue. Perhaps there’s a salve of some sort that can help. 🤞🤞
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Finally I Can sit and type short message

Hello lovely ladies,

it has been a rough rough road since my treatment ended september 16. i was mostly bedridden. i lost my epidermis in in the most sensitive areas down there.. and it was oozing and painful painful painful... words cant describe it.. i do not think i felt human ... anyway 10 days ago i got fever and was admitted in the local hospital with suspicion of a abcess which did not materialiaze. They made ct scan for that reason and 10 days post treatment my tumor has shrunk over 50 percent..  What does it mean? I dont know yet.. dr said it may continue shrinking or may not grow or may be a mass of dead inflamed cells.. That night i got GIANT allergic reaction all over my body. I was already in the hostpital, and was put in a general ward.. if you ever watched horror movies this was it... nurse told me int THIS hospital there is no doctor available at night as they are on call. the ONLY  doctor available is in th ER  .. i asked to call someone and she did not. She left me between the time of 11 pm to 4 am with allergic reaction and NO HELP WHATSOEVER.. I personally called an oncologist on call and he directed her what to do.. she put bendaryl iv and around 5 am i drifted to sleep exhausted in pain and itching... my daughter raised hell the next day and they moved me to oncology ward.. there is much more to say but other time.. it was horrible horrible horrible stay ... i stayed another 3 days on iv in oncology ward.. once i had no fever they let me go and continued orally cephalexin till yesterday. I am able to walk now  , not much, my raw skin i healing , chemoroids are still painful, but managable.. the only problem night time the rash appears again, and i have giant anxiety.Sleep is poor every night because of that.. i drift around 6 am... and sleep till 9. 

this is for now.. can not sit longer on the computer... may be tomorrow.. this was the hardest experience i ever had.. and who knows the future any way.. sometimes i worry a lot as this over 50 percent shrinkage is may be good or may be not as good... i dont know...

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Oh Eva, I’m so sorry - how awful! I know the tumor can continue to shrink for at least 6 months after the end of radiation, so hopefully that will be what happens for you. I’m glad your daughter was there to help advocate for you, it sounds like a complete nightmare. Do you have any painkillers? I hope you get some relief soon!
Linda, Lucky like this comment
Oh, Eva, what a horrible experience for you. I can attest, that once we survive this, we fear nothing! Your tumor continues to shrink, or as one of my docs explained, it is dead, it just doesn't know it yet. So don't stress about that, ok? They need to check your white cells, important for healing. Keep on with the sitz baths, or preferably, tub baths. Dry with a cool blow dryer. The worst is over. On to healing. Hugs to you, dear.
I am so glad to hear from you! I was very worried!
I hope you have soft fleece; I even used it like a diaper during the toughest time.
The radiation and chemo stay active in your system for about 6 months after treatment, therefor, continue to keep up good nutrition, while it continues to finish off the monster.
You've had terrible care, but, I hope there is some medical provider(s), that you can rely on.
I hope you continue to improve quicker now.
Hugs!
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My oh my, it has been a horror movie. It so horrible to experience such agony and yet not have a medical team proactively trying to resolve it. It sounds like anxiety meds might help (assuming you’re not already using them). They helped me sleep, too. Time will continue to bring you healing. Bedridden is no fun, but it’s part of healing, so don’t push yourself too hard. Thanks for sharing your update.
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I've been thinking of you and I kind of figured you were on the mend. You've definitely been through the wringer, the more extreme wringer for sure. I'm glad you are on the mend though, and I hope they have you on some good pain killers. Take it one day at a time. We're all here for you. xo Lisa.
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Eva, I know I felt like I would never feel better, but it did finally happen. You have been through a lot more than me in that your medical team seem to have somehow dropped the ball. Is there an ombudsman at the hospital that you can contact for help? Or a trusted member of your healthcare team, even your regular physician you can talk to about this? Seems like you really need better support than you have been getting. Please keep us posted.
Easterly likes this comment
What a nightmare you've been through. The good news is your tumor should continue to shrink, as that's what dead cells do. It will take some time for your pain to resolve, so in the meantime, do all that is necessary to get relief. I am so glad you are home now, which is the best place for healing. Take care and rest up.
Nightmare doesn’t even begin to describe this sorry story! I cannot believe the callous treatment from the nurse. You must have got the nasty night nurse, not the nice one! Horrible experience all round. You have suffered more than most, but you are on the mend from now on. Honest. The vile dead tumor will continue to shrink in size as the radiation works on for some months post end of treatment time. We all know that you will recover, things should get better from now on. I wonder why you have the rash at night? Anything changing from you day routine that you can think of? If you have any strong pain relief - take them!! Let us know how you get on. Take heart
Just want to second all these comments...you are "Dancing with Ned (No Evidence of Disease) and just don't know it yet! The healing process is hard, maybe harder than the treatment, but you WILL get through it! HUGS
Thought of you a couple days ago. I’m glad you have surfaced .. a sign that healing is happening. Keep going warrior, the worst is behind you. 🙏🏼
Hi Eva. I worry about your sleep and anxiety level. May be your oncologist will prescribe something to you to easy your recovery time? Your experience is awful... How about your lymph nodes? Your PET scan showed two I guess. Are they gone? I hope you feel better. Hugs!
You could ask MD for something to help you sleep. I’m so sorry you’re having such a rough time.
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Vital Info

Posts

July 2, 2020

ABBOTSFORD, Canada

May 19, 1956

Cancer Info

Anal Cancer

SQUAMOUS CELL CARCINOMA

June 30

3.1 - 4.0 cm

The disruption of what I perceived as normal. The Robber of joy and happiness,

Who your friends and relatives are.. what they are made of..

just be there and listen

no need of gifts i need your support

Abbotsford Cancer Centre

from people who experienced it.. all tips are welcome

from people who traveled this road.. please help.

LUMP NO PAIN

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