What Kind of Radiation Did You Get for Your Gynecological Cancer?

@dlgbb You'll get very practiced with the full bladder! I'm hoping your team gives you lots of information prior to starting the radiation therapy so you know what to expect and what to look for.

@naturegirl5 Good morning Helen, I got the call yesterday to come for the CT simulation on Wednesday already. It took me off guard, as I wasn’t expecting the call for 2 weeks. I am looking forward to getting the show on the road, but really emotional for some reason. I wasn’t like this before the surgery - I am not sure what the difference is. Maybe I just need to cry it all out today, and get on with it tomorrow. Suggestions?

@dlgbb It looks like your CT simulation was yesterday? I apologize tat it took me so long to get back to you. We had a blizzard that started on Tuesday evening and went into early this morning (Thursday) and we lost power for a significant period of time. So I'm just now checking back in to Mayo Clinic Connect.

Like you I wasn't terribly frightened before the surgery. In my case I had radiation therapy after a recurrence and just that recurrence was such a jolting shock that for awhile I didn't want to even consider the recommendation of radiation therapy. I didn't know what was going to happen during the CT simulation although in retrospect Mayo Clinic had some very helpful videos I could have watched. I made it through with a lot of help and support from the staff including my radiation oncologist and the technologists who explained everything to me before it happened. When I have a clue what might be in store I do much better.

How did the CT simulation go for you? Was it what you expected and were the staff who were present helpful? And finally, is your radiation therapy scheduled yet?

@naturegirl5
Hi Helen,
The CT simulation was fine. I was so fortunate to have a neighbour drive up with me. I live 3 hours away from the cancer clinic. She is the best company, and afterwards I was really tired, so she drove home. I got a better idea of what will be expected. I had been instructed that first I needed an empty bowel and bladder for the first scans, then an empty bowel and full bladder for the next one. The was hard, because when they did an ultrasound before the second scan to check the fullness of the bladder, they noticed the bowel was not empty enough. So of course, if you do one, it is impossible not to do the other! So then I had to drink the water again and wait. The second attempt was more successful, but I can see that it is going to be a challenge. I will say, they suggested walking to help with the full bowel, but it didn’t help a lot, so I went into a bathroom (they are very large there), and line danced without any music, which always seems to help. I am sure people were a little puzzled when they heard so many footsteps in there! LOL. I only will have to drink 2 cups of water an hour before, which is so much better than pelvic ultrasounds. I think it will be okay. I have my 4 little tattoos, got a general idea of the start date (the week of March 24), and have booked an Air BNB on the same block as my daughter. It will be very nice to be close to her, yet still have my own space for when I just need quiet. I hope the weather is better for you now!

@dlgbb Wow, this all sounds very positive. I remember well trying to get my bladder just full enough for the radiation therapy and to be able to wait long enough until my name was called. How cool that you were line dancing with no music! Oh, yes, and those little tattoos. On occasion I notice them now and wonder what's that new mole and then realize it's one of those tiny tattoos.

I stayed in 1/2 of a duplex in Rochester, MN for my radiation therapy at Mayo Clinic. It was nice to have my own space and also have an extra bedroom when a friend or relative stayed with me. I decided to make the 6 weeks sort of a vacation (in December and January?) by doing things I enjoyed and exploring Rochester. With your daughter so close to where you will be staying you can rest and visit with her.

The weather is better today. You're in Alberta, right?, so you well know what it's like the day or two after a big winter storm or blizzard. The side roads had not been plowed when I went out earlier today but it's better now.

March 24 will come up very soon. There was something reassuring to me about all the contact I had with the physicians, nurses, and techs during my radiation therapy. I hope you will feel the same.

How you are feeling this evening?

@naturegirl5
Good morning Helen,
I also felt very comfortable with the staff who did the simulation. All young enough to be my children. I was telling a friend last night that with this kind of cancer, all modesty and discretion goes in the toilet, literally. It was great to get an idea of what the treatments will be like, the positioning, etc. I am not afraid of the radiation. But what strikes me every time I put a hospital gown on in the cancer centre is that all of a sudden I have a little sense of panic, in that it makes me feel “sick”. I have never considered myself sick through this process, because other than the occasional day, I have felt really, really well! Being in the hospital setting makes me feel differently, and I don’t like it. After the surgery, I didn’t feel sick or like a cancer patient because so many women have hysterectomies. But being on the radiation ward is just different. Yesterday I was just exhausted. I could hardly get off the couch. I think it is just “coming down”. I did take my 2 little toy poodles for a long walk, though, because I know exercise helps physically and mentally. Today I feel a bit more up, so we will see what the day brings. I am looking at the time in Calgary as a little vacation too. The property I rented is very nice with extra bedrooms for friends to visit, and in a good location close to shops and parks. It is a very close drive to the mountains, which we may do as long as I feel well. I know this too shall pass, and then I can just move onwards. Yes, I live in southern Alberta, so totally understand cold weather and blizzards! I appreciate your support so much. I am lucky to have many friends who are so wonderful to me, but it just really helps to converse with somebody who has already been through it. Have a wonderful day! Diana

@dlgbb Thank you for posting the sweet photo of your little poodles. The place you are renting allows your poodles? When I was away from home for radiation therapy I didn’t find anywhere that would allow my cats and I missed them so much. But, I consoled myself with the thought that they are cats and although I was unhappy without them I knew they were far happier staying at home. My husband or my neighbor took care of them.

You are entering this radiation therapy with a happy spirit and I know from experience that this makes a huge difference in going forward. With the mountains so close I hope you will take some day trips after you’ve completed your radiation therapy for the day. You can see by my screen name of nature girl that this is what would interest me. My radiation oncologist told me that getting exercise every day would be helpful to me so I did a lot of walking. With the shops and parks you’ll have plenty of opportunity to do just that.

Will you keep me informed on how you are doing as you start the radiation therapy?

@naturegirl5

Hi Helen. Only 5 treatments left! The time has actually gone fairly quickly. It has been so helpful to have my daughters nearby, as well as my sister and friends to pass the time with. On days that I have felt well, we have had some fun outings, including my first NHL hockey game (Calgary Flames vs. Vegas Golden Knights). The radiation has been harder than I expected, but I guess you don’t really know what to expect! There is fatigue for sure, but not totally debilitating. The biggest issue is the diarrhea and stomach cramps. Just brutal. The only thing that doesn’t send me running is a poached egg in the morning. My radiation oncologist started me on Ondansetron to help with the nausea, and I am taking Imodium as needed. Once my stomach settles down, then I feel pretty functional. I have been out for walks every day, especially this weekend when I went back home. It was so good to be with my husband and dogs. Anyway, countdown from 5 is on now.

@dlgbb Hello, Diana! Thank you for coming back and letting me know how the radiation therapy has been going. Diarrhea and cramping is the worst. And nausea. Like you wrote you can't really predict exactly what to expect. My radiation oncologist and the nurse informed me about all kinds of effects I might experience so I was prepared. Do you have weekly appointments with your radiation oncologist? I'm relieved to know that your radiation oncologist has been working so closely with you and prescribed medication that is helpful to you. Like you, I walked every day during my radiation therapy. That helped me to feel that I was continuing with my usual exercise routine and less like a patient.

Since you are in Calgary of course you just have to go to an NHL game! Did you go with your daughter? I've never been to an NHL game. When I lived in Montréal in the late 1980's I never got to a Canadiens game. Tickets were impossible to get and I regret not trying harder to get to a game. You've reminded me that getting to an NHL game is on my bucket list.

How nice that you went home this past weekend. For the Easter holiday? I can imagine how much you missed your husband and your sweet little poodles. I'm thinking everyone was happy to see you home. Who jumped more? Your husband or your dogs? 😏

So this is your last week of radiation therapy? Well done. After this week will you return to Calgary for your surveillance check-ups with the radiation oncologist or will you do that closer to home?

Hi Helen!
I was given information ahead of time about what to expect, as well as dietary information to try and help minimize the diarrhea and make treatments easier (e.g. eliminating fibre, etc.). I have seen a radiation oncologist once, but have telephone call visits weekly with a nurse. Everyone has been so incredibly helpful. I have never felt unable to reach out with questions, and the radiology technicians have been unbelievable. I will actually miss them. They are just so kind.

I went to the hockey game with 2 friends of mine who live in Calgary now. It was a great evening out. It took a bit of prep - an Imodium and I skipped supper because I didn’t want to have any stomach issues, but it was well worth it. I am not a Flames fan, but it was still a great experience! It was their last regular game of the season, and sold out. Quite a sight to see all the red jerseys!

Speaking of bucket lists, when I was first diagnosed, a friend and I were discussing our bucket list items. Not out of morbidity - just out of a “these are things I’d like to try sometime”. We both agreed a hot air balloon ride was on both of our lists, and I found out a few weeks ago and that my friend and his wife bought me 2 tickets for a ride in May!!!! Of course I am going to take my friend who came up with the idea, but wow - what incredible friends. I just love them!

I asked the radiation oncologist what follow up would look like, and it will be trips to Calgary every 3 months for 5 years, seeing first the radiation oncologist and then back to my surgeon who is a gynecological oncologist. If all is well, I may be able to see a gynecologist back home for the last year, but honestly, I would prefer to stay with the Calgary team.

The time here has gone quickly. I wish I had a bit more energy so that I would have gotten more work done on the quilt for my friend’s wife, but I guess I can finish it at home. I am not usually one to sit still for long, but I have spent a lot of time under a snuggly blanket, just peacefully doing Sudoku or reading. I am fine with that. I have learned to just listen to my body and adjust my schedule accordingly.

I think when I get home and am still waiting for my energy to come back before I jump back on my bike, I will begin some gentle yoga classes and just try and prepare my body to get back into my routine, which is pretty active. I also think I will need to take some time and just journal and process a little. I have so much to be grateful for. Then in May, I have some cardiologist appointments to deal with an issue that was discovered on my CT scan before the surgery happened. I am hoping that is the last step before I can just get back to the things I love.

I hope you are well, and want to tell you how much we all appreciate your mentorship, listening ear, and support. It makes the journey that much easier to have somebody who can relate.

Diana
P.S. My dogs jumped higher, but my husband hugged tighter!