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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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  • Nadi's avatar
    Nadi
    Member
    10 years ago

    Thanks Kath, I read your post and then immediately went out and did 5 laps round my yard!!!! I am on a quarter acre so they were biggish laps. I needed a sleep soon after though! It still felt good and I am going to try that everyday until hospital next week. 

  • Nadi's avatar
    Nadi
    Member
    10 years ago

    Thanks Jane. I know now after reading wonderful advice from all the women on here that I need to be patient, to listen to myself and to be realistic. But most of all, it is so good to be reminded that others have been where I am and have 'gotten there' and I will too, eventually.

     

  • Nadi's avatar
    Nadi
    Member
    10 years ago

    Thanks Christine. What they describe on the link you provided is EXACTLY what I am feeling. I had been told about fatigue that could last for 4 - 6 weeks after radiation but I didn't know about fatigue that lasts beyond treatment. I know realise that my expectations of myself are all wrong. I rang Cancer Council and they have set me up with a Counsellor that only deals with cancer patients to talk about the expectations I have of myself and how I can return to health. I will take all the help I can to get through this thing.

  • socoda's avatar
    socoda
    Member
    10 years ago

    Hi Nadine,

    No wonder you were feeling exhausted. With all of that happening and a temp of 40 I would definitely say something else was going on in your system. If you feel the need to cry because the goalposts you have set for yourself have been moved without your permission - go ahead and cry!! I think if a medical professional moves your goalposts you tend to adapt to it slightly better but if it's your own body that is moving your goalposts that seems to be a bit harder to deal with because you feel that you are letting yourself down. YOU ARE NOT!!!!!! Is it possible for you to have a word to your boss / bosses and perhaps shorten the hours you are back at work initially until your system decides to play along? May not be an ideal but could help - you probably have all of this in hand already. Be gentle with yourself. Let us know how your tests went, and take care. Xx Cath

  • Lindyloo's avatar
    Lindyloo
    Member
    10 years ago

    You are one very brave lady. I take my hat off to you. I totally understand 'when am I going to feel normal'. It just feels like one thing after another. I foolishly thought that after all my treatment, chemo, mastectomy, radiation, that I would be back to my normal self, doing two jobs and running the household, gardening etc. Just before I was about to start radiation I broke a vertebrae and rib after developing osteoporosis from the chemo. Unimaginable pain, so going back to work wasn't an option. I have to stand at work and do a lot of walking. Someone had mentioned to me that there is a new normal. How right they were!

    my only suggestion is try to focus on your diet and drink lots of water and if you feel up to it, a little exercise. Be kind to yourself, you are still going through a hell of a lot and it will take more time than you thought. Everyone of us is different so it's hard to put a time frame on when you will feel totally well again.

    i wish you all the best, you wonderful lady. Let us know how you go.

    Linda xx

  • Debza's avatar
    Debza
    Member
    10 years ago

    Nadine I feel your frustration in wanting to feel well,with all the prodding and probing.I am not experienced but a newbie,just had all the tests and Sentinel node biopsy leading up to R invasive breast cancer and wide excision.Results next week.Was informed I would require radiation,up treatment minimally but if if had spread chemo.I don't know till Wednesday nursing a big bruise and I am over it too.You are so brave,give yourself time,I valued your honesty of how you were feeling instead of sugar coating it. I may have all that to look forward to,frustration and without support it looks like it could be a long haul.debza

  • Deanne's avatar
    Deanne
    Member
    10 years ago

    Hi Nadine,

    Gosh, you have really had so many extra bits to contend with you poor thing. The others are all right when they say give yourself some time. It is so hard, we do want to feel normal but it DOES take time.

    Fatigue from cancer treatment is not like just being tired. I remember feeling overwhelmed and just needing to put my head down and have a kindy nap a lot of days for months after I finished treatment.

    I eventually worked out that I just could not do what I used to do. My energy levels were depleted from treatment and if I tried to do too much I would just exhaust myself. I had to replenish those energy levels and that meant finding a new balance in life. I had to put myself first or I was no good to anyone and I actually felt that I would make myself sick again!

    For me it was important to do more of the things that helped give me energy, like taking time for a walk each day, noticing the good things around me etc AND less of the things that took my energy (this really involved not putting pressure on MYSELF and expecting too much!). I learnt to say no occasionally and also to ask for help.

    The more that you struggle against things rather than listening to what your body needs the longer it will take to recover, I found. It IS hard to adjust those expectations but often the person that is hardest on us is ourselves. It's ok to take it slow, in fact your body simple will not let you do it any other way. 

    Really hope you find a way to make it work for you and start to feel better soon. You have had more than your fair share of extras on top of treatment. Sending you a hug, you deserve a break. 

    Deanne xoxo

  • Brenda5's avatar
    Brenda5
    Member
    10 years ago

    Lets hope the new tests get to the bottom of what's going on with you as it just doesn't sound normal. What you can do is drink plenty of water, take a women's multivitamin every day, eat a banana as its a wonder food and take it easy. Save your strength for one thing, work if you want. I know I have. My number one duty is to maintain my fish breeding tanks, even if I can only manage cleaning one or two a day, that's my focus. To get a little more energy I take a Berocca drink and that works too. Look after you. Hugz

  • buzzine's avatar
    buzzine
    Member
    10 years ago

    Hi Nadi,

    I had chemo then radiation, my last radiation was end February,I remember my radiation oncologist saying you will get very fatigued after first 10 sessions,I had 30. I never realized that being tiered and fatigued are totally different. My gosh I was not able to function after round 15,now 4 months later I'm going to yoga once a week and walking twice week for a hour.Some days I need a Nanna nap other days I'm good. I get very frustrated that I cant do more.Your body will recover, sounds like you still have a lot going on.

    If you need to cry then do, I stood on beach once and just started screaming  people thought I was mad,this bald headed lady screaming and crying but gosh made me feel better.

    Nadi organise a massage,facial your nails done what every makes you feel like the beautiful women you are.Give yourself time out to recover,(my children would laugh reading this and say you should practice what you preach mother.) 

    Good luck and one day we will all look back and remember these days and will smile and say I made it, I beat cancer.

    Janine