I didn't receive a notification of any activity on this site until today. I've been thinking about everyone and wondering how everyone was feeling. I thought it was quiet due to the holiday. I'm sorry to hear that you have been having a bad week. My diarrhea got so bad during treatment that I had to be hospitalized, but I never had much of a warning (no stomach cramps) until it was happening. Gross and embarrassing! I keep a chair by the toilet so I can lay across it if I have one of those bad days. I also found it helpful to hold a pillow when I was so sick. My tummy never cramped until AFTER treatment. Now I'm getting terrible tummy aches. I still blame one of the chemo nurses for pointing the radiation equipment too high, but of course the doc says "no way". I saw a Gastro doc a couple of weeks ago and hope to have some answers tomorrow. I'm 6 months post treatment and it's gone on way too long. My docs kept referring me to each other not knowing what to do.
That's a long time to deal with mouth sores. And a long time to be at an appointment. It hurts to sit on our bums. They shouldn't keep us waiting! Monday's were always a long wait with new patients coming in. I try not to schedule on a Monday now.
It is scary (I'm still scared because I expected to feel better than I do). But the docs really took care of me during treatment and I'm sure they will take good care of you. The blood tests are super important. I think if I had followed their suggestions I would not have had such a hard time with it. I was too ill to sit through a 2 hour orientation so they gave me the binder instead. I was too sick to read the binder until I was almost through with treatment. They suggest eating 5 small meals throughout the day. It's hard to get into that mind set. Don't worry. The docs will monitor you closely.
It would be so fun for you guys to come to Texas! Of course my dream is to come your way. Let's do both!
I didn't know about the warm water trick. My radiology oncologists suggested a Squatty Potty. I actually spent a lot of money on one and can't position my self correctly on it. So I squat on the potty seat. He said it puts your body in a position for easy elimination. I don't weigh much so I don't think I can hurt the potty seat.
And my medical oncologist said to take stool softeners with the pain meds. Normally one would not take them on a regular basis, but I am not going to worry about it. It's really painful if the stool is not soft and super painful and causes other problems if I get constipated. Such fun things to talk about.
The exhaustion comes and goes for me. I can make it a couple of hours and then it hits if I am out and about or cleaning the house. But I'm okay after I rest a bit. I don't think that has changed for me. I believe it's always been like that since treatment started. But I'm probably not your typical case. I think Sandy was healthier going in and didn't struggle as much (or just isn't a whiner like me).
May is right around the corner. It won't be too long before you will have your results.
Hi Sheri, I haven't been getting all the notifications either so every now and again I just log in and check.
I do feel for you, you seem to have suffered the most I think. I find it so frustrating that things are not getting better more quickly, sometimes it's as tho the Drs are not sure what they are dealing with.
I've actually only had two days of diahorrea, other times I've found my body is saying it wants a poo but I have to sit there for about 15 minutes till I feel it' safe to get up. And that's when I get cramps too. The trouble is I'm not sure what I'm supposed to be feeling.
Always thinking of you and looking forward to meeting you all one day in the not too distant future.
I think we all have had a rough road (including you), but it feels so much better when there is a light at the end of the tunnel. My bathroom has become my most frequented room and I'm afraid to go out and about because I've had some unfortunate incidences in public. At home I get my hands washed and out the door and a few minutes later have to start again.
I realized today that I have been saying things out in the open here when I could have taken a more discreet aproach. I hope I haven't embarrassed anyone.
Are any of you ladies having tummy issues? I had tummy issues during treatment but not tummy aches. The tummy aches (intestine area) started after treatment. I saw my surgeon today and she thinks it might be from the pain meds. I cut back on the amount a couple of months ago (mostly because they keep me awake at night). They don't completely knock out the pain, but I can't imagine going without them. So I'm fretting over that because the tummy aches are almost intolerable. Will have another PET scan and CT scan as soon as the insurance will cover it just to make sure nothing was overlooked or came back. It's been 6 months so they should approve it.
Mandy, I found out today that there isn't a blockage like I thought. The radiation can cause the area to atrophy which makes it feel like there is blockage. Physical therapy can help, but the doc wants me to get stronger before attempting it. I can't imagine it being so phycially demanding that I couldn't tackle it now. I'm almost afraid to find out what it's all about.
I'm rocking my new Nancy Reagan hair cut. Not at all what I hoped for (I was hoping for more of a Twiggy look) but it's the best we could do with what was left of my hair and it's definitely better than no hair. The oncologist said that most people do not loose their hair with this treatment. His physician assistant said that I would loose my hair. It did not come out in plugs like some of the ladies I've seen in the waiting room. It kept getting thinner and thinner and thinner until I just had a super thin, whispy layer over super short hair that was left or new growth. I wonder why it didn't completely fall out. The chemo nurse said my hair loss was due to malnutrition. I slowly cut it shorter and shorter and now there's nothing left to cut. I'm thinking of maybe putting a couple of pale pink highlights in it so as not to be mistaken for Nancy Reagan's sister.
This is my third or fourth attempt at posting. I keep going back to other pages to search for the latest joining and then I loose my post. duh!
It is so fun to think about meeting alll of you. Something to dream about.
Hi Lynne, I agree that it helps to stay busy if you are feeling up to it. It makes the weeks go by faster. It seems to take forever to get to the next step or to get to day 1 of treatment.
Lisa, I'm saddened to hear that you will have additional treatment to go through. I have found the doctors and nurses to be amazing. There will be some scary times, but they know exactly what to do. You will remain in my thoughts.
Just wanted you ladies to know that I'm thinking of you.
Hi Sheri
My potty wasn’t expensive it was a flatter version of a trug from a garden centre for 1.50....it works wonderfully for me. I didn’t or haven’t needed to spend ages on the toilet so just sit in the warm water when I feel I need to go and work wonderful for me. Mainly I think it has eased the pain when going but also keeps me clean without too much wiping which is still extremely tender. I didn’t think tiredness would effect me but I feel doing too much takes its toil. It sounds like you....do too much and your body will tell you. Please go easy on yourself. You have been through a lot and giving your body time to recoup will pay off in the long run. I think you are doing well and don’t be too hard on yourself, I think you are doing well. Give yourself a big pat on the back! I am sure things will get better for you...maybe slowly but you’ll get there...thinking of you always xx
Thanks for for the helpful tips re pooing! I too spend all my time worrying when is it going to happen and how bad will it be when it does and I haven’t had treatment yet! Will invest in a squatty botty. Talking about our bots is something I’d I thought that would happen but I guess it’s the nature of the beast.
Have just had an ultrasound scan on my thyroid and there is another lump! They took a biopsy there and then, nice needle in the neck! I will get the results a week Monday. Dr said that hopefully it’s benign as they generally are but even if it is cancer it can be treated, another wait!
i keep hoping that I might wake up from this nightmare at some point.
im in Portsmouth and as far as I know my chemo will be liquid but administered first inthe hospital then a pump at home. I think the hospital has a support group, they have large Macmillan centre there which has been useful. I tend to rely on this little group and although different cancers 2 friends have been on the train to Cancer Central and they have helped me.
Sorry Sands are you officially in remission yet, sometimes I can keep up with all the posts!
