Forum Discussion
Treatment is over. Where did 'normal me' go?
I remember at the beginning of all this, when I was undoubtedly stronger and determined to fight and determined to be proactive in my treatment every step of the way, writing down a list of questions for each visit to my surgeon, then for each visit to the chemo oncologist and again for the radiation oncologist. The questions I asked are no doubt similar to other women: "why are you suggesting this treatment, what are the side effects, what would happen to me if I don't have this????" etc etc etc.
By asking these questions I felt like I was empowering myself. Many things were, and still are, out of my control but I was determined to have a hand in what would happen to me at least treatment wise.
But this week I think all the fight has left me. I am SO over it. And I feel like I am never going to be 'normal me' again.
I finished radiation on 5 May. And in my mind now is the time when I was expecting to totally get back to 'normal' as all the yuck stuff - chemo and rads - are done. But I was sick in the last weeks of rads. My blood tests and liver enzymes were abnormal and then I couldn't eat or drink for weeks on end meaning more hospitalisation for dehydration. I had rapid weight loss of 10 kgs in about 6 weeks.
Despite all that, last week I returned to work (for me no work means no income as I have exhausted all leave). It was my fourth attempt at going back and I tried to battle through it, hoping that 'normal me' would show up soon. I love work and I love the people but I found myself literally falling asleep at my desk - the head dropping nanna nodding off routine - several times, and hope no one heard me snore!
This week I was sent for follow up bloods and yes, yet again my port (which I had a second surgery on 3 June to correct as it had flipped) failed again. Three hours of attempts to put a cannula in my arm and finally we had blood. After the blood test I felt exhausted. The last 2 weeks I had been having incredible chest pain - the stop-talking-walking-driving-or-whatever-you-are-doing kind of chest pain. So it was off to have (yet another) CT scan with my first ever deep vein cannula - ouch!!! The CT showed significant thickening of the oesophogus.
So my chemo oncologist got me an emergency appointment with my Gastroenterologist first thing on Wednesday. But instead of asking questions I just sat there. The Gastro doc told me that I need to have an endoscopy, colonoscopy and biopsies to rule out anything sinister. I simply couldn't think of anything to say. I drew a blank and was numb. I think I might have sighed. I didn't ask whether these procedures were absolutely necessary or anything about what would happen if I didn't have these tests and they just treated me for an inflamed oesophagus. I was mute. Then I went with the nurse who ran through a very complicated preparation routine for the colonoscopy. At the end she asked if I had any questions and I just lost it, bursting into uncontrollable sobs which is totally NOT me. The nurse and hubby were so stunned they bundled me off back home and told me not to go into work. I went home slept for 6 hours straight then that night I woke with temp of 40 so maybe something else was going on.
But I've been crying pretty much ever since simply because I am more exhausted now than I have ever been in my life and yet active treatment, apart from Herceptin every three weeks, is over. I always expected to be better by now. I want to be normal again, I need to be normal again. I am tired of hospitals. I am tired of general anaesthetics. I am tired of procedures and tests and needles and my bloody port failing all the time when I have no viable veins. I am tired of feeling unwell. I am not depressed, I know depression - this isn't it - it's just exhaustion which is something new and I just don't know how to get past it. I keep mentioning to my doctors that I am exhausted but they never address that.
I would really appreciate hearing from others who have felt the same exhaustion. I would like to know what others have done to feel better or pick themselves up again. How have you got back to 'normal'?
Grateful for any advice or for sharing your experiences.
Nadine
37 Replies
Hi Nadi it is such a long trip. I also thought that once I finished active treatment I would feel great and get back to normal. It has been such a shock to still be on that roller coaster. I had people telling me that my body and soul had been through alot and I had to give it time. I'm slowly getting my life back but it will never be the same. I'm still at work but have been using leave to get back into work. I still see a counsellor once a month for a tune up and if it wasn't for my knee at the moment, I would say life is good. Take some time to cry and time to stop and smell the roses and not be so hard on yourself, sending you a hug xxx
Thanks Janine. I too had 30 sessions of rads and was doing ok as I was working throughout all of them. It seemed I didn't hit my wall until the last few weeks. I went and did the massage thing yesterday. Oh it was wonderful. Will save my pennies and do that again. Looking forward to looking back and saying I beat cancer. Thanks for the encouragement.
Thanks Cath. I now know I have to be gentle with myself. I will have talk with hubby about taking more time off and then easing back into things on a more realistic level.
Thanks Linda. Ouch to the vertebrae!!! I broken my tail bone and that was excruciating! Thanks for the realty check. I am going to have to allow myself more time. I just never expected it to be this long. But if that's what I need, then that's what I need. Take care
Thanks Debza. I really hope that you don't have to go through the long haul, but as you can see if you do there is always this wonderful network of women that will help you through it. I am so grateful for the support I get here and the understanding - it makes such a difference. I remember how scary it was in the beginning waiting for results after surgery and I wish you all the very best with that. Please come back and let us know how you get on. Take care
Thanks Deanne. You hit the nail on the head when you said 'the more you struggle against things rather than listening to what your body needs the longer it will take to recover". The problem was I didn't understand what my body was saying. I would go to work feeling fine thinking, "Oh I can do this". People would say how fantastic I am looking and I would think great I've got this and then unexpectantly I would crash in the afternoon. Or I would do a full day at work and then crash the next 3 days. There wasn't really a rhythm to it. But now I think I just shouldn't be back at work at all just yet. And then I should just work my way up to it. Thanks so much for the reality check and the understanding.
Thanks Brenda for the advice and support. I'll try the berocca. Still can't eat though as I can't swallow food. Hopefully they'll give me some meds for that after endoscopy next week.
Thanks for the reality check. I don't know why but I never thought Herceptin was active treatment. But you are right. Yes, I now realise my expectations were way off. Where did you have oncology rehab? Is it the same as counselling from a cancer counsellor? I have arranged for one of those. I also had a massage by a specialist who deals with cancer patients yesterday. It felt great. I am resting heaps. I find I need an afternoon nap every day at the moment. So I am just going with that. Thanks for the wise words.
Thanks Karen - I don't know why but I just didn't realise it could take so long to recover. I had it in my head that after radiation I would be fine. Guess that's why I had the rant, I was angry with myself. Definitely now wiser on that front as well.
Thanks Anne-Marie I hope you feel better soon too. I started very little walks and will build these up. I am working on getting stronger emotionally. Maybe I needed a good cry anyway. Thanks for the support, it means a lot.
