With 24 treatments down and 6 to go I'm beginning to understand what this is all about. I just don't feel myself. It follows a different arc to recovery after surgery which has been my forte in recent decades.
I'm going to put pen to paper tonight and figure out some strategies and philosophies and mantras to help me get through at least the next three weeks. It's like all of us. We have big surgery, start to recover from that, then wham, chemo, radiation or both.
Right about now is when the struggle really begins for most patients. The last week is the hardest one to get thru. Even though rads continue to work even after the patient finishes in my opinion the final few days of rads were harder. Thats when I attempted to quit my treatments so I could just stay home in bed until I felt better. Its didnt work out as my son and nurse insisted I finish every single one. Just keep telling yourself "this too shall pass" and all those other encouraging sayings.
If you can get hydrated in the chemo lab, that would really help you alot. I always felt so much better whenever I got hydrated with a couple bags of saline. Here in the US, it takes a doctors prescription to get hydrated. Hydration is not offered, you have to ask for it.
As far as calories go, Im sure its getting pretty difficult to hit the magic numbers of 2500 calories and 48 - 60 oz of water every single day. I know if you push yourself and have a day where you take in about 3000 or even 3500 calories and 60 oz of water, it will help you to feel better too. I know its really hard to do but by pushing yourself to take in more it really will help.
Hang in there!!!
thank you Christine. You really keep me going!!!
You're welcome!
I know its not easy and often OC patients can feel hopeless. Towards the end of rads is the part where it really starts getting hard. Hang in there, I have faith in you that you will get thru this.
We are here to lean on when you need us.
You will get through it - planning ahead is a must near the end but you are doing so well. Blessings to you.. And many hugs. Remember think of what would make you feel better as you go through this and try to employ some of those tactics.
I agree with Christine with respect to the IV hydration, especially at this point.
Also, be sure to stay on top of your pain levels so as not to let them get out of control. I had a palliative care team taking care of me. They help to manage a cancer patient's pain, not just end of life issues.
Best wishes. I know how hard it is and I am so sorry that you are there right now. Just remember, this will save your life, even though it feels like it may be killing you at the moment.
You will be in my thoughts. If you've made it this far without a PEG, then I applaud you. I think I had one place during the third week.
In good health,
Kerri
Thanks, people. Remember that I am not having chemo so my issues are not as bad as some people's. Unpleasant all the same but having had chemo by itself 18 years ago, I can imagine how it must add to the mix of nasty side effects.
Only four more treatments to go! Don't feel quite so bad tonight - maybe because staff were quite encouraging today. Had my weekly visit to the radiation oncologist who said that it might not get much worse after this week. Ray of hope. Keeping on top of the nausea.
I'll consider the hydration if I'm in dire straits but right now it's up to me to keep drinking.
Love to all
maureen
Three days to go and I've picked up a bit. Not feeling so deeply unpleasant. My skin's really red but they say it's in good condition considering the number of treatments I've had. I've got thrush but can't feel it the way I normally do. Whether it's because of the numbness in some of the area or the Oxycontin I take am and pm, I don't know.
The slight improvement could be because I've increased the anti-nausea meds or because the staff have been very encouraging. Maybe because I have another of my sons working from home at my place this week. I guess I feel better when the conditions around me are more congenial.
Dietician has suggested that I try to eat something with texture like a weetbix (cereal biscuit that can be softened with milk). I can't stand the taste and feel of oatmeal right now.
Try Bran Buds in Yogurt. This will help with the texture you need plus the thrush. Even though you can't feel it right now, get the thrush under control - it is painful and nasty once you do feel it! The medication for it doesn't taste badly, and is fairly inexpensive and effective. Hugs. You WILL get through this, and the sun WILL shine again!
Donna
Thanks Donna. I'll look for the Bran Buds to see if we have them or something like them in New Zealand. The more things I can eat the better. Fortunately I was able to eat a weetbix today: covered it in hot water, then milk and brown sugar. Don't know if I needed the sugar because the wheaty taste was not too bad at all. As the dietician said the texture was just right and my poor old mouth could process it very well.
TWO days to go with a weekend in between.
Soft and mushy... still my friend. hugs... you are almost there. This was when I found it the hardest. This weekend before the last two days...
Ahhhh ....only one day to go. It's the weekend now and Monday is my last day. I seem to have just about got through the dreaded last week although I'll see what the side effects throw at me over the next few days. My face is red, rough and dry. There's a sharp pain in jaw and ear .... but only from time to time and it seems to fade if I move around. I wonder if it's some sort of fluid build up.
I don't identify my tiredness as fatigue because it doesn't feel like that. Once I'm up and about I can stride along and hurry through tasks etc but I feel a lack of initiative. I also sleep for a long time at night and don't dare lie on my bed in the daytime or I'll fall into a half sleep and wake up feeling ghastly.
Finally...the finish line in sight!
Congrats on your upcoming finish. Mine was two days after Christmas last year; had a treatment on Christmas Eve and another the day after Christmas, so couldn't travel for the holiday. But, friends invited me to spend the day with them, great food, but I couldn't eat any of it, had to do my bottles of Ensure instead.
Now that I'm several months post treatment I've been through the worst of it. With any luck at all yours won't be too bad.
Hang in there, it gets better, it will just take awhile
Tony
Hi there, Alpaca,
Don't have anything useful to add, but came here anyway to help you shout "Wooooooo Hoooo!"
Bart
Thanks, people. One more day of the uncomfortable tongue bite and tight, tight mask. I'll sort of miss the staff though. They took good care of me.
Side effects are bad now though. An ulcer has broken out in the skin of my cheek. No bothering me physically but worries me a little. Nausea is hard to get rid of and the thought of putting food in my mouth is anathema to me. I just make up a milkshake with Fortisip 4 times a day and have one weetbix with milk.
My constant companion is my laptop. When things get a bit slow I look things up on Wikipedia or watch episodes of Coronation Street. I did slip outside to dig up some new edgings for my garden, something I can manage for about 10 minutes. Also tried to take a close-up of a newly hatched Monarch butterfly but it took fright at the sight of me and flew uncertainly into the bushes.
You're doing well. The ulcer on the cheek is normal rads is brutal - hugs..l one more day... YAY!!!
Good luck tomorrow, and congratulations
Well I think it's morning right now (at least) where you are, Alpaca, so maybe you're even finished. Wow! Your courage is brilliant. I send all good vibes.
If you do need IV hydration, see if they can do it in the infusion unit rather then the ER as Christine stated. Its much faster and the staff is really good about IV placement. Being dehydrated will make you feel like crap, interrupt homeostasis and worsen constipation. Yogurt, with acidolphilis is a good preventive but if you have an active case of thrush you will need Diflucan for that
By the time you read this, you will have finished all the rads. Congratulations, Alpaca. You can now focus on getting better.
Yes - wooooo hoooo go girl!!!
Yes, finished yesterday, wrote a post, then lost it. Never mind - I was jubilant about finishing in spite of feeling a bit sore, washed out and blah.
Side effects? I've lost one kg since treatment started, lost most sense of taste, have a sensitive, swollen mouth, little energy and rough, dry red skin with some broken down patches. I can see only one ulcer but the nurse said the very red skin in the scar near my ear was about to break down so I have a dressing which looks like a ruff around my neck.
I'm sure I've left out some effects. Last night I had to pace the floor for a while because of the pain in my ear. It dispelled quite quickly and I went back to sleep until 8 am. Late for me! Most of the time Oxycontin keeps pain at bay.
I'm giving these details because I always want to know how the side effects work out in others so hope my accounts might add to the mix.