Hi ladies. Hope all is well with you. I am about to enter my 4th week of treatment and starting to feel the fatigue. I'm also having a bit of a hard time mentally. The good news is, my 4.8cm tumor is practically all gone based on my internal exam last week. Radiation oncologist bumped up my cure chances to 90% (1b2) and I was absolutely elated. The issue I'm having is staying in a positive mindset and I think the side effects are not helping much. I feel so weak, tired, anxious, and have no appetite. I've lost about 15lbs and I was already thin to start with and thats not helping my anxiety. Another issue is I also belong to a group here in the states and it seems every other hour someone is posting about metastesis and being declared incurable (some also being my stage), or that they are dealing with an excruciating amount of pain from radiation. Its taking its toll on my mental state. I need to know I'll get through this and I really have nowhere to turn other than these groups because no one understands. I just feel so scared and alone and I've read how positive and uplifting you all are. I just need some positivity. I want to know I'll feel better and beat this thing. I'm so terrified about recurrence. Thank you for taking the time to read this . Just having a bad day. Please help.
4th week! You are nearly there now! You've done so well to get this far before your mind started to get to you. I got flu in my third week and missed two chemo sessions on the trot because of it. I remember how despairing I felt at the time. You are doing great!
The tiredness is completely normal and pretty much at its peak now, so just take as much guilt free rest as you can (I slept loads during the day and it didn't seem to stop me sleeping at night either.) The smallest level of activity left me knackered, and in the end I stopped guilting myself about it. Chores just had to wait, with essential tasks getting priority and shameless acceptance of all help from friends & family.
Regarding weight: I had the reverse problem because of a combination of the steroids and, because all I could eat that didn't go straight through me was mashed potato, I put on weight. I'm still trying to take it off! Can you bear mashed potato? You can add butter or cream to it for some extra calories too. (I didn't do that because I would have ended up the size of a small bungalow, but it sounds like you definitely could.) It's warming and comforting and not too hard on the bowels either. Do you have access to a nutritionist or dietician on your team who could advise you re: sipping high calorie supplements through the day, or increasing the calorie value of other things that you can tolerate? Do you have a ready supply of ice cream in the freezer? This is not the time to be responsible. That can come later. If the weight is falling off you, just eat whatever your body tells you to eat, you can get sensible after this is over!
The psychology of all this is a minefield, and everyone is different. The recurrence thing is tricky, and I've had to do a lot of work on this long after the treatment was finished. I was lucky to have a referral to a clinical psychologist for my 'Scanxiety' which helped a lot around the time of my annual follow up scan. I was convinced I had recurrence, but it was clear. Your mind and your body will play tricks on you, its natural & normal. Just try to focus on the immediate things that you CAN do something about rather than possible futures that you cannot. It's tedious & repetitive but your head takes you there and you have to gently take your own hand and say 'Cant do anything about that, so there's no use wasting valuable time and energy on 'What ifs' , let's spend that time and energy on 'What now'. Then focus on doing something practical or lovely or tasty that rewards your immediate self now. You can do something about that, and it's a far nicer way to help your 'now' self tackle this thing which logically makes better sense for your 'hypothetical future self' so it's a win-win all round! I still go through phases of needing to do this, I'm fine for weeks now but occasionally the heeby-jeebies kick in and I have to 'gently take my own hand' again.
You are actually in just the right space right now. You have an expert team dedicated to taking this on with everything that they have, and you are seeing them most days. Between you, you've stopped that cancer right in its tracks, substantially reduced it and upgraded the outcome and your treatment isn't over yet! You are a fabulous women. You've SO got this covered.
Now go and get someone to find you some icecream. ;) x
Cheery is right - you are so close and you can certainly do it!
I felt horrible throughout the treatment. The nausea and diarrhea started for me on day one and didn’t stop for the whole 6 weeks. And the fatigue! I didn’t know you could feel so tired. At first I would perk up a bit on the weekends, but by week 4 there wasn’t very much perking up left in me. And you know what? I got through it. I didn’t ever think I’d feel right again, but I did. I had such anxiety over the diarrhea - how do you drink enough to keep a full bladder when drinking water made you have immediate projectile liquid burning poo? I remember thinking there is no way I would ever feel good again, but I did. Once I finished treatment, the anxiety went away. I was able to just rest without worrying about the long commute or if I could get to a bathroom in time or would I need to get sick in the car or if my bladder would be full enough. My last radiation was on a Friday, and I’m not kidding you, I felt just a bit better that weekend. And when Monday came and I didn’t have to go anywhere, I felt a little bit better again. And soon I just ate what I wanted because my appetite started coming back and Imodium started working.
For me, I had to break time up into very small but definite increments. I started out by counting the number of treatments, but then I had to switch to counting weeks, because it was a smaller number. When the weeks seemed too long, I just focused on getting through the day. Then, I just had to get to the clinic. Then, I just had to get through the 10 minutes in the machine. Time went so slow, but then all of a sudden it was all done.
I was stage 3c. I was never given my chances - they said right off the bat that they could get rid of it, and I wasn’t sure I could believe that. My tumour was huge and it had started to spread - parametrium, uterus, many lymph nodes including para aortic. By my last brachy (in week 4 for me - mine was done in amongst my chemorads) I was told that the tumour was gone. I didn’t do the last chemo because of all of the side effects that I was having, but continued with the rest of the radiation, just so that I could know in my own head that I did what I had to do to fight it, which is exactly what you are doing now. My 3 month PET scan came back clear, and all looked well at my 6 month appointment My fingers are crossed that it stays that way. They said if it comes back, we’ll fight it just like we fought this. I know that I have a higher risk for recurrence, but I just have to hope that it won’t be the case - there is nothing more I can do about it at this point except try to enjoy the time I’ve been given.
I know it seems like forever until you are finished, but it will come, and then you WILL feel better. Some ladies have lasting side effects, but many come through it just fine. Once you start feeling a bit better physically, hopefully you can start feeling a bit better mentally as well. I visit an American forum as well for uterine cancer and it, too, seems pretty bleak sometimes. But I still think there are more success stories than recurrence stories, and what I have to take away from it is that if the worst happens and it comes back, I won’t be alone.
And lastly, the weight. You may find that menopause takes care of that pesky weight loss problem for you. Ice cream has never tasted so good to me as it does now, and boy do I indulge! For everything I’ve gone through in the last year, I think I‘ve earned it!
Hang in there. Almost done! And hopefully many many good days to come.
I didn’t have chemo and radiation so I can’t really comment on the side effects from that however I was diagnosed with stage 2b coming up 4 years ago. being part of such a large group might be why it feels like loads of negative posts? If it’s bringing you down and not helping you mentally I’d leave. I find this group up lifting and it was and is still my go to place if I’m worried about anything.
Charlene xx
3 weeks in...well done! You're on the home stretch now ❤
I am also a member of some other groups but have stopped checking them as the anxiety was too much for me to take at times. It's hard enough to stay positive without reading about the negative. I find this forum a perfect balance of reality and support so it's the one I stick with.
I'm not sure I will ever be totally free of fear related to recurrence but I have an amazing medical team that reminds me often that I'm human.
I will have aches. I will have pains. I will have fatigue. All warriors do! I learned early in my journey to do what I could each day to take care of myself. Some days that meant sleeping all day and others it meant sitting outside and soaking up some vitamin D. Some days it was eating until I couldn't move and others it was eating just enough to get me though the day. Some days it was doing yoga and others it was thinking about doing yoga Haha!
Wherever you're at on any given day work with it and do your best. You got this ❤
Thats the hardest part for me is the lack of control and the unknown. I searched on the other site for positive outcomes and stories of recurrence pop up. I'm suffering from so much anxiety that I dont know how much more I can handle. My platelets as of now are too low for chemo on Tuesday and that has me stressing out like crazy. My Drs all gave me a great prognosis and I don't know why I cant seem to focus on that. Maybe its because I physically feel like garbage? I just can't focus on anything else. Maybe PTSD?
I HATED the lack of control which is why focusing on what I could do each day helped so much. Also, it kept me from fighting with my expectations which was a huge struggle. I felt like I had to be positive all the time. What a crock! It was the biggest, hardest, scariest fight of my life!
I allowed myself to go to 'the dark place' for short periods of time. I even wrote my own eulogy if you can believe that. So I started setting an alarm and limiting my time to focus on the negative. The fear is real, the anger is real, the sadness is real. Allow it then move on.
Also, I had a phenomenal therapist! PTSD is very real among people who have experienced cancer and treatments. It's ok to ask for help and be sure you have al the support you need. You deserve it!
If you ever want to chat I'm here ❤
