Starting Radiation August 2021 - Anyone else?
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Hello everyone. #10 finished today. I'm starting to see some pinkish redness, but not too bad. I am using the skin creams/lotions and potions 3 to 4 times a day and maybe that is helping. I don't have an appetite, but I am able to eat. Just need to set a reminder - EAT EAT EAT!
It is interesting how the body responds to yet another onslaught. I keep waiting for the fatigue to set in as I am told by many it will happen. If I haven't mentioned it, I am going to acupuncture once a week to help with the fatigue so maybe I won't experience full effects (knock on wood).
Sleep is starting to be a little disrupted. If anyone has any suggestions I would appreciate it. Could be the late nights with the hubster and his dialysis drop off and pick up. Hoping this will eventually get sorted out as well. My hope is he will acclimate to his new normal and be able to drive himself.
Cooking is a bit of a challenge. His needs - low or no sodium, no phosphates, no potassium no dairy, no tomatoes, no starchy vegetables - this includes squash which I LOVE this time of year, no spinach. Just doing the best we can. Just onward and upward.
Hope everyone is hanging in there.
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Hi Mimi! So glad. that the fatigue has not set in (knock on wood) it very well could be the acupuncture! I pray it continues to work for. you.
I found it helpful to listen to a thunderstorm or the ocean waves on my iPad to help relax me at night and allow me to get some sleep, not much, but some.
My mother began dialysis in May and I was back and forth taking her and picking her up as well as making sure she ate. She did start feeling better in July and started taking herself(at that point someone else was taking her), but Thank God she had more energy and felt better. The nephrologist had said it would take a couple months for her body to become accustomed. I know it's not easy, especially with you having to deal with your own health issues as well, I was there. My mom's diet restriction were/are the same, it was so difficult at first to get her to want to eat anything as she was so accustomed to "our" way of eating.
Hoping that the SE's stay away and that you get some sleep.
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Serendipity - thank you so much for the glimmer of hope! I hope he will be able to start taking himself too. Also for the sleep recommendations.
#11 today. Oh and I got a new cream for the acupuncturist. It is called Manuka I hate the smell but it does relieve the pinkish/redness and any pain associated. I would recommend it.
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Mimi - Manuka is honey and is very good for healing. I do not like the smell of honey, but had I been offered it or even known at that time that it had wound healing properties, I would've def used it. So glad it was given to you.
#11 down! That's great!
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Hi ladies,
I haven't been able to post for a bit and I've missed chiming in but I've tried to follow our thread and lift you all up in my prayers as we go through this.
And by the way, cutest doggie photos ever- Michele, was that a chicken plush toy? And Ivy's doggie in jail.. perfect for Halloween.
Mimi, this is a lot for you as you also care for your husband. Hugs to you..... I am a full time caregiver and didn't think I could do this, but found that I can. It's hard when their diet is different from yours. My uncle had that same diet due to his kidneys. He got depressed because it was so hard and he felt like he couldn't eat anything he liked, BUT THEN he found this amazing cook through a caregiving organization. She came and cooked amazing meals for his special diet that he LOVED. He perked right up. He was able to fill his freezer with tasty food for the whole week. There were only a few things she made that he didn't care for. He was so happy! So, even though it seems so limiting at first, at least it can be done with the help of some spices and foods that are on the diet.
And what you described... that does sound exactly like cording. I have it, too.
And I never have much appetite either, and need to remind myself to eat enough calories. I never had fatigue during radiation but probably because I did not have chemo right before rads. I think they do not let us detox enough in between treatments.Jen, I cannot believe your insco is still denying the PT, especially since you've already had lymphedema. I really appreciated the info about how it takes longer to heal inside than the skin outside, because I was just wondering about that today. I never blistered and my "tan" went away in one week, so I thought hey, I skated through OK. Then came the phantom stabbing pains, not too bad but definitely getting my attention. And at night I have to hold my chest if I turn onto my side, or it really hurts with the movement to the side. So I feel better now knowing that the insides WILL heal, but will just take more time than the skin did. I have switched from Calendula to massaging with Bio Oil now that my skin is fully healed.
Ivy, I"m with you on the ocean sleep sounds. I downloaded a free App called Ambience and it lets you choose three simultaneous sounds. Last night I chose: Heavy Rain, Thunder, and Clock. LOL. I like the ticking. Reminds me of an old fashioned grandfather clock we used to have. But now I can't sleep when it's silent! Melatonin is also helping. But I can't take too much or it makes me groggy. I take about 7 mg.
While she was massaging my cording at the armpit this week, my PT said that my cord probably won't spontaneously resolve, (i.e. "snap") because it's not thick enough or tight enough. I was disappointed to hear that, as it spans from my elbow to my armpit, but she said it's OK because it is not inhibiting my movement from things I want to do. She said that some women literally hear their cord snap when they trip over something at home and suddenly had to reach out to steady themselves. I said, great, because there is actually a good chance of that happening, or I can make it happen, just to get rid of the cord.
Another lady, when my PT finished massaging her arm, as the patient got up to put on her sweater, they both heard the cord snap and suddenly she had her full range of shoulder movement back! So, it can happen. But the massaging REALLY helps so Jen I hope your Insco does the right thing and reinstates that for you! MacDebbie, don't worry too much as you read our experiences. Some of us had fatigue, some didn't. Some had blistering/burns, some didn't. It is different for everyone, and you may sail through with minimal issues. That is my hope! Glad you are here with us.
Sleep well, much love to all,
Esther
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Hi Esther! Glad you are well and that you checked in!
Regarding the cording snapping, I've had it happen several times, but it's usually during PT when my therapist is stretching. I've tried on so many occasions recently to get it to snap but I think it's too "thick." She usually has to really in there to make it snap, it sounds like bubble wrap and it's instant relief. I cannot wait to get cleared to go back to PT; granted I'm sure it's going to hurt, hopefully not.
Jen- how are you feeling?
The costume fits my Apollo today, he was so naughty on our walk. He has a Napoleon complex and every time he saw a dog, he went nuts, which then pulls my arm.
Hoping you all have a great weekend!
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Hi everyone, I'm hopped up on pain killers right now - had another surgery yesterday. I am doing ok-ish today. I stepped down the amount of pain meds I'm taking as of this morning - because when I came home from surgery, I was so high on the combo they gave me that I felt and behaved as though I could run a marathon. LOLOL Meaning this: I felt zero pain and something about the way the pain killers hit me, instead of making me sleepy, I was like 20 times more ramped up with energy and zip than I normally am (and I'm normally high energy, to say the least LOL), so it was strange and misleading for me and my poor kids, who came home from school and found me peppy and giggling and moving a mile a minute, in spite of the fact that I'd just been cut into! (this was below the belly button, not above, for once) So strange.
Anyway, this morning I figured I could take it with less pain killers, so I tried. sure enough, yup! Turns out I've had surgery LOLOL. So I'm doing something today that I mostly never allow myself to do: Nothing. And by nothing, I mean....nothing! This is an important thing for me to learn how to do, it turns out. I deliberately said to myself: cozy pajamas, podcasts, laying around in bed, nothing. It is a rainy, autumnal, chilly day outside. The kids are super excited about Halloween - but in a pre-teen/teen sort of way - my husband has been so graciously doing chores and I've tried really hard to just allow myself to sit still. I did force myself to do a very slow stroll around the block.
And: I have been thinking of you all so much and how important this group has been for me. I don't have the focus to respond to specific posts right now. I send you all loads of love.
Full of gratitude that you are all here,
Jen
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Esther - I have had the same issue with sleeping. I get stabbing pains, but also, my incisions still hurt! (surgery was in August). Melatonin helps me fall asleep, but I wake up several times during the night, and can't get comfortable again. my son gave me some THC edibles, I finally tried a half of one last night. I am not sure if it made a difference or not. I still woke up a few times, but I had less pain than the night before.
Yesterday, I had a rough day. I had three clients to see at work - so three hours of face-to-face on a computer. Then I tried to do my charting and billing, and I COULD NOT FOCUS. I was just so tired, and distracted, I was looking up random things on the computer instead of doing my work, and eventually gave up and came home. Now, today, my day off, I have to do my work, but I just don't feel like it. I finished radiation two weeks ago, I expected to feel less tired by now. So - I don't know if its the cancer, the radiation, or that I'm now taking Femara (letrozole) - probably all three combined.
I'm glad for this group, thanks for all the support and information.
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Aww Jen, I didn't know you were having another surgery. How are you feeling now? ((Hugs))
Tinker - It was 2 or 3 weeks post-treatment that I finally just "Woke up" and felt awake and some energy. I bet your feelings of being tired and distracted were probably a combination of all 3 things combined like you guessed, and I hope you're feeling better now.
My fiancé started a new job last week so on a whim the week before I asked him if we could do one last road trip and we took off that afternoon. It probably was a bit too much for me as last week I felt extra tired. But I needed the couple time and the beautiful changing of the leaves and the ocean. We drove from San Diego all the way up to Bend Oregon and then back down along the California coast.
I've missed you all and hope you're doing well. Again, remember that I was almost in the ER because I hurt so bad after RADS treatment -- And now I'm back to roadtripping. There is light at the end of the tunnel
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Esther - thanks for the encouragement. Just keep swimming is my motto these days. Six more radiation treatments to go. I am pick and a little itchy, trying to remember to recoat the skin multiple times a day - I really should set a timer on my phone.
Jen - Gosh I'm sorry about your surgery. I am glad you are giving herself permission to heal. It is so hard to allow ourselves a day in bed. So kudo's for making it happen. Hope you are feeling better with each day.
Mich21 - A road trip sounds lovely. I just love the west coast. I'm glad you were able to do that. I am excited to do some traveling once I'm through this. I have tried to take a few weekend trips, but it is hard to do with hubby so ill. I will need to figure that out as well.
Hope everyone has a fabulous week. So glad you are all here offering encouragement and support.
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MimiArmani: 6 more to go! I'm so excited for you - you're almost there! Keep doing the lathering. It helps so much. I'm many many weeks out and I still lather every night - it's messy for my nightclothes and sheets and such, but it is helping so much. I don't want to stop until I'm 100% sure I've done whatever I could do. Anyway, you're almost there! So excited!
Thanks for the kind words about surgery. I'm still healing, so it'll be a bit. Yesterday I was like "I feel like I can really walk a bit further today!" I was so excited and it was so pretty out. So I did. And then I got too far and thought "gee, if I go home carefully, I'll never make it home until midnight."
I overdid the walk out of excitement. Had to have my husband come get me. Ouch. That was dumb. I was too excited and my brain was ready but my body was not. Oh well, we live and learn. So I'll be more careful and less driven starting now. It keeps being a lesson I have to learn and re-learn. When will it stick! LOLOLTinkerbell I hope you're going easy on yourself (obviously I'm not quite masterful with this just yet LOL) and when you're tired, I hope you'll rest. It takes a while to recover from this treatment stuff. Radiation really is a dramatic thing to do to our bodies. Once the skin heals, the inside stuff is invisible to the naked eye, but there's a lot going on and your body is working so hard. So please know we get it. Fatigue is real.Also, you are probably correct that it is all 3 things combined. Which, to me, is very real and it is important to be kind to yourself about that.
And Esther! I love your sounds. I cannot sleep when it's quiet either! LOLOL! Clocks! You are hilarious and adorable! Ticking!? Love it.
Love you all. You're all always in my heart,
Jen
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Jen - I'm sorry you needed more surgery, I hope you are doing well. Take care of yourself. I have a fear of taking the dog for a walk around the block and fizzling out halfway, so I get it.
Mich21- a road trip sounds great. I feel like I lost a lot of time, being kind of isolated and trying to deal with all the stress. I am finding it easier to focus on my work now, but I'm still having thoughts of giving it up and taking an early retirement. Meanwhile, I have a son halfway across the country I haven't seen in a long time due to COVID. We are making plans to visit him in January.
Mimi - you're more than halfway through your radiation! You will start feeling better in the not-so-distant future. Hang in there.
Thank you, everyone, for being here.
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Two more treatments! I've got ants in my pants to be done with this already. My skin is red and itchy. I've purchased some cortizone cream and have been trying that for the itch. So excited to be done with appointments for awhile. It is simply amazing how much time all of these treatments take. I just want to be able to go away for a weekend without - I have to be back for radiation - I need to see how I feel after chemo - how tired will I be. I feel really lucky to have treatment to have tolerated things fairly well, but I am anxious to not have to live by the calendar. Well...not entirely true...hubby needs to live by the calendar - but at least we don't have to consult both!
So appreciative for these groups. The support and feedback and positive energy is truly priceless.
Hope everyone has a great week. Thinking of you all.
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Mimi only 2 left! I love it "ants in my pants to be done" - a great way to describe the feeling! I'm so excited for you that you're so close to the finish line! It is amazing how much time and energy and focus it takes to do these appointments! Please keep us posted about how you're doing in the days/weeks ahead. Thinking of you so much!
Love!
Jen
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Mich21 - I hope you enjoyed your trip. Sounds so relaxing! I agree wit you, there is light at the end of the tunnel. I honestly don't know how I was able to get through the last week and the two weeks after. Saw had my one month follow up with the RO yesterday and was "dischsarged". Skin is still a little dry, but back to normal.
I did have a scare last week with another blemish on the breast. I had an appointment last Tuesday with MO to start Xeloda and it turned in a huge fiasco. I had to have an emergency biopsy right here, stat PET Scan and brain MRI, but thank God everything came back negative. Very scary.
Mimi - almost done!! I pray al is going well with your husband!
Hi Jen
Tinker 0 -
Hello! I finished yesterday and played hooky on work. Took the day off to celebrate. Went for breakfast at a local bakery and then a friend met me for some local shopping and we had lunch. I met the owner of the restaurant, who happens to be a 4 year survivor - so that was awesome! So so nice to be done. Now I will address all the fear, anxiety, emotional turmoil rather than just getting through whatever the hell the next step is. The radiation team gave me a certificate and some flowers which was very nice. My daughter brought over hot pink roses with light pink carnations - super thoughtful and my hubby brought home some pink champagne - so funny because neither of us really drink. LOL.
Hubby's health is a mess - I think serendipity inquired. Dialysis 3 times a week and late at night. It is quite painful and it is still taking an adjustment. I guess the dialysis itself isn't painful, but the after effects of it are. They had to call 911 last week and he earned an ambulance ride to the local hospital due to some heart pain. Thankfully, nothing too serious (he has congestive heart failure) this time.
I'm following some recipes from the dialysis website and some are okay and some are meh. A learning process for sure. At least now that I'm finished with my treatment I can focus a bit of energy on his issues. What a year!
Appreciate you all so much.
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MIMI!!!! HOOOORAYYYYYYYY!!!!!!!!! YOU DID IT!!!!!! You're done!!!! I'm so so so so so happy for you!!! I know we are all celebrating in our hearts - for you!!!! That is so sweet that your daughter brought pink flowers and your husband brought champagne even though you don't drink LOLOL. That's fabulous! And I'm so glad you ducked out of work to enjoy yourself. SO thrilled for you.
I'm so sad, though, to hear about your poor husband and how he has to endure the aftermath of the dialysis. The after effects of intense treatments can be brutal, as we all know.
Poor guy. That 911 moment must have been very scary for you, as well. I'm glad he's ok, but still. How loving you are to find some recipes and try them out. He's a lucky guy to have you looking out for him. What a year indeed!
Please stay in touch. Update us about you and how you're doing and your husband and your life in general, when you can.
I'm holding you. - and everyone here - in my heart always and forever.
Celebrating you!
Jen
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Thank you so much Jen! You're so uplifting and encouraging. I hope you are healing from your surgery and getting all the love and support you need. You're in my thoughts, prayers and good Karma!
Mimi
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Mimi - You're done!! WOOHOO!!!
I'm so sorry about your husband. My mother was the same, she has other health conditions that we thought would pose problems, but 2/3 months into dialysis something changed and she started feeling better (sorry if I'm repeating myself). She wanted to quit early on. Her nephrologist assured her time and time again that it would get better and it did. She's going 3x a week as well and will go home and rest for the rest of the day, but on her days off she seems to be enjoying life; she's out and about at least every other weekend, going on day/weekend trips. As with anyone going through such aggressive treatments, there are still days that she doesn't feel good and she just stays put those days. I really hope and that your husband gets that relief soon.
Hang in there! I know it's not easy, especially you still having just finished radiation. {Hugs}
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oh my gosh Ivy! Your biopsy and scans terrifies me just reading about them, I am so glad everything is okay!! ((Hugs))
Congrats Mimi!! So happy that you’re done!!
Jen, hope you’re feeling better
So, last week I called off work sick due to fever, chills, body aches. It started on Saturday and by Wednesday I had developed a HUGE goose egg lump at my incision site. Painful and worrisome. MO said it looks like lymphedema and told me to get back I. With the surgeon. She also put in a referral for physical therapy for me. I see the surgeon today at 3pm, pretty sure she’s going to aspirate & I’m afraid it’s going to hurt. It already hurts. I feel like everything since diagnosis is two steps forward and one step back. I don’t mean to be a downer I just am emotionally exhausted. On the plus side, I had already requested this whole week off for vacation which is now a resting staycation lol. I’ll check back in after appointment.Oh and MO said this could still be a radiation side effect. Ugh
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Mich - I pray everything goes well today and that it is not painful. Please do check back in after your appointment. Sending positive vibes, warm thoughts and lots of love your way.
BTW, Completely understand the two steps forward and one back. {Hugs}
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Ohhhh nooooo Michele. Please update us when you can. Thinking of you. It is SUCH a pain - all of this crap we put up with! It already hurts.
My heart broke reading that. You poor sweet thing. We'll all be thinking of you so much. I'll be checking in to see how you're doing. Sending so much love.Jen
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Good morning my friends, I'm sorry I'm so late in with the check back in. I saw the surgeon and she did indeed aspirate. She pulled out 220cc's of fluid (Which is the equivalent to a breast implant the size of a lemon!) The local pain killer was a pinch but after that I didn't feel any pain from the needle. But, I felt like I was going to faint, thank goodness I was laying down and my fiance was there. She had me in compression bandages for 48 hours, and since I'm allergic to adhesive, I basically took a benadryl nap the whole time.
I felt better for Thanksgiving weekend and my kids were in town. They had me on antibiotics for infection, so the chills and aches went away but my breast still felt sore/bruised. I still had a large knot inside which hurt when my arm was down or brushed against it and sleeping was difficult. I assumed this was scar tissue since it was inside. I went back to the surgeon for my follow up last week and she said it was still fluid. (A seroma). She said she'd have to aspirate again -- This time I was all alone! As soon as she gave me the shot for pain, the fluid started draining. She said it's because there was so much pressure inside. In total, she pulled out 110cc/s of fluid. She said this would be a chronic issue for me. She believes that a stitch or something tore internally which created a void and that it's a side effect of radiation that's causing the fluid build-up.
So, on Wednesday I am headed back to the hospital to have a drain put in. She didn't say for how long but she said they'd need to inject betadine weekly to help it scar up and hopefully stop. AND it's all going to be done just under local pain injection. None of this sounds fun, I'm so frightened. Of course in the long run I am sure I'll feel so much better without the pain and pressure that I've just gotten used to thinking it was my new normal. But, I'm still so scared. Also, she said this was not lymphedema, she said my lymph nodes are fine with no swelling and that I don't need physical therapy.
Anyway, I wanted to update - Especially because she's calling this Seroma a radiation side effect.
Hope everyone is doing well.
Mich
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Mich - I am so sorry you are going through this. And another drain?! UGH! But like you said, hopefully it will alleviate the pain and pressure you've been feeling. Some temporary discomfort for some permanent relief. So happy it's not lymphedema though!
I'm sure you feel, as many of us do, like it's a never-ending battle!
I pray everything goes well for you on Wednesday. You will definitely be in my thoughts and I'll be sending you positive vibes. Keep us posted.
Sending warm thoughts and hugs.
All my love,
Ivy
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OMG just seeing this now. Oh Michele I'm so bummed you have to go through this. It sounds scary and upsetting and painful. Sweetie, since I am seeing this so late, please update us and tell us how you are doing - hopefully the procedure wasn't as awful as you anticipated (but also, it might have been that or even worse? UGH I hate this stuff so much). You poor thing! UGH radiation has kicked our butts in this crew!!!! Hopefully this issue will resolve swiftly for you. Anyway, sending GIANT hugs and loads of love. Thinking of you and again, so sorry for my delayed viewing of this post. LOVE YOU!
Jen
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Have just asked this on another forum as well, any input appreciated:
I would like to hear from those of you who finished radiation how often the Radiation oncologist is supposed to follow up? I did 4 weeks of whole breast radiation and had one meeting with my radiation onc about two weeks after completion. That was almost six months ago. I sort of feel like that was the "see ya" appointment and then we are supposed to go back to our regular medical onc?I understand that unless we have some specific issues that maybe we are no longer to be followed by them? I have had some tightness and mild rib pain but I sort of stretch myself out and it is not horrible so I have not pushed to be followed. But is this standard that once radiation is completed you are sort of dumped out the door with no further follow up----ever? Would appreciate experiences from others?
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Racheldog--I suppose it varies by doctor. I finished rads in November and will see my RO in about 6 months and I believe that will be my only radiation followup. I will have MO appointments every 3 months for the next 2 years because I had IBC, though.
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Rachel - I believe it's standard practice so long as there are no issues. I saw my RO once a week during rads and then 4 weeks after I finished my last treatment.I was then "discharged." The MO keeps an eye on things and if I need to see the RO she'll let me know. I have severe tightness and am in PT twice a week, nothing is working for me right now. I see my ortho next week and the MO the following week and hoping one of the can help me get some relief.
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Racheldog - This sounds about right to me as well. I haven't even had my first follow up with my radiation doc yet. That comes in February - and now that I'm thinking about it - that's strange - quite a long time since radiation ended! LOL. Anyway, my oncologist is overseeing the treatment, and I, too, have had lots of strange things happening - I cannot sleep on that side, I see a PT for help with mobility - cannot do certain things after surgery + radiation on that side. That said, I don't think our radiation docs are in charge of the recovery so much as they are there to be sure everything got "radiated" just as it was supposed to be. Does this make sense? I guess I have been thinking my oncologist is really the one who is in charge and there are others helping with recovery. Hope this is useful?
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Thanks to all who posted and qualified their situations post radiation. Still, kinda weird as it seems like we are just out the door after radiation is over. I had left sided radiation and will always be concerned and worried in the back of my mind that heart issues can and will pop up because of it. Healthcare is in a sad situation right now and it seems like all doctors and staff are overburdened. Yes, they are being pounded with more work and more patients but, as the patient, this one foot out the door approach once the part of the "radiation oncologist" is over is sort of discouraging.
Stretching out my left side does help but there are other mornings quite still. I still moisturize that breast as the skin after radiation seems more "bumpy" and less smooth. Lots of questions that---thank goodness for this forum---seem to be answered between all of us rather than the oncology staff.
Seems like the medical oncologist is going to be an every six month appointment after treatment is over and we still have to keep on top of this on our own as a patient to make sure appointments are made.
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