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, if the rush back to work is because you need the income maybe you can talk to CanAssist perhaps they can help with some of the bills and you can give yourself some more time - sending you hugs!!!
Dear Nadi, I wish I could give you a massive hug. You are absolutely 'battle weary'. That moment when we just have no more fight left. This happened to me when I thought I was out the other end and ready to get on with life again, when my goalposts got moved and I was told I had the BRCA2 gene and will need two more prophylactic surgeries. I lost it! I gave up. It was so hard to get on with life because it feels like no matter what you do, your feet keeps getting knocked out from under you.
You will get through this too hun. You will get to the end of this marathon too and there will be a time of rest. Hang in there, lean on us and your family and hubby and support groups. I hope you turn the corner soon and that brighter days are closer for you.- Nadi, I'm honestly too tired to write anything very coherent atm, but I want to let you know I'm feeling for you. Your complications and feelings have struck a raw cord with me, as I'm 6 weeks post radio, abd after a swathe of serious complications, i thought by now id be much better than I am. In fact I'm pretty sure it was directly stated and frequently insinuated, that I would be much better than I am by now!! Well, I'm doing my best and then some. I think maybe we've all had unrealistic expectations.
I wish I could say something more profound, but just one foot in front of the other huh? And rest! And be gentle on yourself xo Hi all thanks for the posts Nadi and Kathy Jane,well I went back for the post surgical appt to be told Sentinel node biopsy was clear and the 3 cm hasn't spread,but...... ..we have to go back in as we didn't take enough tissue for testing,and you have pre cancerous cells.So back in a surgery a week later.That was Thursday,much better,I had a huge hematoma they drained and I get results next Wed at post op clinic.Hope all are well.
Hi Debza..
my thoughts are with you too.. Im also a Newbie but my skin sparing Mastectomy will be hopefully the 25th July.. Im working up till then and then 6 weeks off. I have Left Invasive Ducal Carcinoma 3cm. Ive apparently had it for about 12 months and never knew. I am having the Sentinal node removed under surgery but my CT and Bone scan are done and just waiting to see the Plastics Surgeon on Tuesday.
I just wish I had time to breathe as it is like being on a Roller Coaster at the moment.
OMG that would of been terrifying for you...so glad you found him.
My thoughts have been with you since my last post. I had the scans done in the last 2 days and so far so good..no spread or mets. Looks like it might be all go for me on July 25th.
Hi Kathyjane, boy do I hear you! Not knowing what is going to happen is scary and i apologise for maybe freaking you out, but we all get through it even when we think we're not. I so needed a rant last week as everything seemed to crash down on me. I just needed to get it out. But I am also reminded that many women have complete opposite experiences to me. They get through just fine, they continue to work and all is good. What I didn't put in my post was that I am also caring for elderly parents who are in a bad way at the moment. They have no other family close by. My dad has Alzheimers and that disease is just terrible to deal with. It is really taking a toll on me. Last night he went missing in the dark when it was 2 degrees outside. We found him but the panic and stress I couldn't help but feel was unbelievable. Things are better today.
You are going through a lot at the moment. It's a whirlwind at the beginning. Take the 6 weeks you have to have off when you can't drive and use that time to concentrate on you.
Wishing you all the best.
Take care
Nadine
hi Nadine,
I am so sorry to read your story... my story is about to begin. I have only just been on this site for a few weeks and I have to say,,, Im worried and scared for what is about to happen... and not knowing what is going to happen either.
It has been 4 weeks since my first ever mammogram and since then every week has had bad news..stage 2 invasive Carcinoma 3cm in Left breast... Stallate Lesions and would never had found it if i had not gone along for the mamm...
I am having surgery in about 5 weeks but where it goes after that who knows... Radiotherapy, Chemo??? and what ever else I have to endure. The not knowing is the hardest bit.
In the next 2 weeks I have tests to do.. bone scan, CT chest, Pelvis and abdo. then see a Plastics Surgeon to do the expander and then what ever treatment I then have to have. I wanted to be back at work on the 15th August but that is now not going to happen either as i cant drive for 6 weeks and so that means i cant get around to get to work. I am a Clinical Facilitator for Nursing Students and work in various hospitals.
I will try to go back in Sept ... as I am the same as you.. dont work dont get paid..and I have no sick or holidays being contract.
I am so worried about the after effects of what Im about to go through and it seems to be consistent with most women on here... I know the difference between depression and just being down ...
I truely hope you can get to the bottom of your side effects and find out soon.. My thoughts are with you and my heart goes out to you.
Hey there
You need to ease up on yourself a bit. Fatigue is normal i used to feel like passing out walking down the street. Then one day i noticed a slight spring in my step and it all improved from there. It took a long time and every one is different. Try and get a short walk in each day you will be amazed at how energised you will feel.
Take care
Nadi, the counselling and oncology rehab are different things. I did mine through Eastern Health. It is a relatively new concept and is not available everywhere yet. It is an 8 week program that you go to twice a week. They do exercise for where you are at, they do emotional counselling, they do work shops of things like the fatigue to give you strategies for dealing with it, they talk about pallative care (I always thought that was for people who were dying only but not so), they go through the effects of a diagnosis on yourself and those around you and we also talked about travelling and insurance after you have had cancer. It is a very worthwhile program and I would highly recommend it. I also do counselling which I have also found invaluable. I had 33 radiotherapy sessions and worked 4 days a week whilst having it. I look back now and wonder how I ever managed it.
