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Nadi's avatar
Nadi
Member
10 years ago

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

 

 

 

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  • Cook65's avatar
    Cook65
    Member
    10 years ago

    Hi Nadine,

    "active treatment apart from herceptin"! Honey you are still in active treatment. You are suffering the side effects of the radiotherapy, let alone chemo. You've been through hell and are STILL going through hell. You are trying to get back to work. You've lost 10kgs in 6 weeks! Love, give yourself a break! Of course you want it over but the fact is, it will take probably 2 years after finishing active treatment before you start to feel more like your old self. I finished active treatment 12 months ago and a couple of weeks ago, I made a post about how good I was feeling, FINALLY. Well, that lasted all of two and a half weeks. I got a bout of gastro which ended with me being taken by ambulance to hospital with what appears to be angina. I am back to feeling absolutely exhausted all of the time and all I want to do is sleep. I'm back on the round of doctors and tests again.  I have had the week off work and don't even feel like I've had a rest. If you thought that you would be coming good by NOW, then your expectations were unrealistic. Try doing an oncology rehab course if at all possible. They will help with your expectations, ways of dealing with the exhaustion, improving the way you feel (both physically and emotionally). I have learnt not to allow my batteries to get lower than 30% because it takes so long for me to recharge if it gets lower than that. Hang in there. You are doing so well. I know you don't feel like it but you are. Don't forget to find some time to just rest. I hope the next lot of tests go well for you. Take care. Karen xox

  • primek's avatar
    primek
    Member
    10 years ago

    And so sorry about the spelling issues...I hope you can decipher. 

  • Karenhappyquilt's avatar
    Karenhappyquilt
    Member
    10 years ago

    You are exhausted.  It may take some time to recover.  My cancer counsellor said assume 12 to 18 months to recover after cancer treatment ends.  I am so sorry you feel like this, but it's not your fault.  The treatment pushes us to our limits.  Work is not for you,right now, I suspect.

    One thing I thought was that as well as being tired you are now wiser.  We start out asking questions of doctors but eventually learn they know much more about this than we do, it's hard to compete.  In the end we have to do the treatment, which is very difficult.  And that is enough.  We don't have to second guess the experts as well.  We have to keep our diminishing energy for the treatment and recovery.

    good luck with these tests, I hope they reveal nothing sinister.  Best wishes Karen

  • LITHGOW1950's avatar
    LITHGOW1950
    Member
    10 years ago

    Hi Nadine, my heart goes out to you. You really wonder how much one can take.  I have just finished chemo and Radiothreapy and got through that ok (not brilliant but ok) but I feel just so tired.The side I got Radiothreapy on hurts.  I thought once all treatment finished I'd be so damn good but I feel flat.

    thank you for your post it makes me realise how big this battle is and how ups and downs happen to many of us. So many times I say to myself I just want to feel normal.....we will get there!! We have to realise the ordeal is such a strain on us physically, emotionally and spiritually. 

    I know you will stay strong especially with all the positive thoughts coming your way.   

    And you will have heard this before but walking will and does help with fatigue.  

    Please keep us up to date with how you are going.

    Anne-Marie

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  • primek's avatar
    primek
    Member
    10 years ago

    I had 6 montgs off work last year fue to mental exhaustion (after ridiculous eorkloads forcyears and compounded by active bullying) I was so exhausted I did nothing...virtually nothing for months. Now I hadn't  had cancer treatment then. Even that took months to recover from. I started with small amounrs of exercise. Lime walking around my yard for 5 laps. And I did this aeceral times a day and slowly increased. I focused on nutrition. Ensuring I ate from a wide variety of good groups and increased water. Youvhave had dramatic weight loss. You have had malnutrition because of it. You don't  have to have a general anesthetic with this procedure..just sonethibgvto lightly sedate. I am sure yhey are just being cautious and the thickening may well just be radiation flow on issues. ..but you know it's  best to just gavecthe check ir it will play on your mind. Csn you look at a really short walk pre work...using minfulness technique and perhaps also in one of your breaks. It might help, one never knows. My thoughts are with you. Things will get better. It just takes time, more time than you'd  hope for unfortunately. Kath x

  • Jane_Elizabeth's avatar
    Jane_Elizabeth
    Member
    10 years ago

    It sounds like you are just totally, overwhelmingly, bodily, mentally exhausted. Even though things have stopped being done to you, they have still BEEN done to you, and you are left with the recovery process long after they have all stepped back. The most poignant part of your post was when you said "I think I might have sighed." That says volumes about just how exhausted you must be at the moment. It sounds like you have a lot of physical issues still ongoing which, once addressed, will help you on the road back to "normality", but you will probably find that once you arrive back in that place, it will look a lot different to the last time you were there. Whether any of us can return to where we were before starting on this journey is questionable, when we have done, seen, and experienced so many things that other people will hopefully never have to. All strength to you Nadine, you will get there, even when you think you can't. Jane

  • iserbrown's avatar
    iserbrown
    Member
    10 years ago

    Hi Nadine - my heart goes out to you as I have been reading your posts along the way and goodness you've had it tough at times.  I am not sure what is on this website for exhaustion / fatigue and I am sure there is information, however, I found quickly on the net this link from the Cancer Council of Victoria

    http://www.cancervic.org.au/about-cancer/types-treatments-trials/fatigue_and_cancer

    I hope it helps for you to understand that in some ways it is normal as you have been through the mill and back more than once.

    Hope you find a new kind of normal eventually but now these other issues have been thrown up so it may still be sometime.  Be kind to yourself!

    Take care, sending you a virtual hug

    Christine xx