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Heli's avatar
Heli
Member
10 years ago

The new normal

This is my first post. My name is Heli.  I was diagnosed with metastatic disease 4 years ago and have been living very well until earlier this year. I started chemotherapy in June, had major side effects and stopped the treatment but am still very unwell 3 months on.  The Drs describe my condition as extreme fatigue, I was in hospital for days and feel I have come home weaker.  I need help every day, I try to walk a bit every day but can't go out on my own.

This is a huge adjustment and I miss my old life, walking my dog, doing yoga, driving my car....all things I took for granted. Now it is an effort to get dressed, takes me hours.  I have come home under a palliative care team.  This feels very scary and hard to accept.  I have never been an anxious person but some times find this overwhelming and find the days very long even though I have someone popping in most days.  I live with husband and he is very supportive but he is struggling too.

I think I am going to have adjust to living this new life without energy. I find it very hard to ask for help but am getting there with that one.

My oncologist hopes I will improve but it hasn't happened yet and I think I need to come to terms with living this way.  I try to stay in the moment and not let my mind go into the uncertainty about the future.  Sometimes I feel my heart will beat right out of my chest!

The cancer has come back in my small intestine. It has never showed on a scan an was diagnosed after surgery.  Apart from the weakness and fatigue I have very uncomfortable symptoms that make life difficult.  I am on quite a restricted diet but have no interest in food. 

Am am going on and on here and I feel a bit chaotic in my thinking so I will sign off now.   It is really draining to write too much.

I wanted to post to a 'depression and anxiety' group but am un familiar with how this works so not sure where this post will end up.

Thanks for listening 

helena

anxiety
Fatigue
metastases
support-groups
  • Heli's avatar
    Heli
    Member
    10 years ago

    Thanks Sharon. Struggling to stay upright today but trying to keep moving. 

  • Pink66's avatar
    Pink66
    Member
    10 years ago

    Hi Heli,

    if you request to be come a member of the depression and anxiety group and once accepted if you choose "post" then choose the group and it will only be able to be seen inside that group.. Nowhere else

    I Am living with Liver and bone mets and chemo and oestrogen murders are indeed a challenge to this little turtle and fatigue has been a huge issue with me at various times.  Some times due to the liver squatters playing up and sometimes purely due to the treatments.. I also suffer from serious joint pain and stiffness during oestrogen murdering such as letrozole and currently exemestane. (not everyone thankfully gets this stuff).

    It is indeed awesome that you have been able to stay active but this 'set back' would be very difficult to accept as it such a 180 degree change from before.  When my fatigue is at its peak, my "new normal" can bring thoughts of failure, hopelessness, why bother and the list goes on. I find I am always on the lookout for something I can change so I can get or stay mobile and active but have altered how I do things and turtling has become a way of life (so far from an operations manager for a 24hr security firm with monitoring center).

    Please excuse my waffling on but I really wanted you to know that you are not alone in what you are going through, this disease can seem to be like the quiet companion and then bam....  it is trying to be the boss and rule your every thought..  It is a crazy, annoying and exhausting roller coaster ride. Then without warning, it can just quieten down again and it seems ok.. 

    I have found success with my Naturopath (she has a special interest and also trains in 'cancer'). We regularly check my oncology medication (to ensure we are not doing anything to harm its effectiveness) and try to keep my body functioning as well as possible so treatment is not so draining. When I first arrived on the door not long after Abraxane my inflammation levels were ordinary to say the least and now we seem to have them sorted with a combination of 'tasty' herbs and supplements and diet.    I did my first chemo and rads in 2004 without her and the after effects lasted for near 2 years..  With her, it was on my feet within a few months of finishing the Abraxane..  This latest lot has taken a little longer (damn annoying really) but it really hit me very hard by the 6th dose (Taxotare/cyclophosphomide).  If you are interested, perhaps I could ask her if she knows someone with the same interests as her in your area?

    I am hoping you are able to gain energy from your resting and very soon find what it causing such severe fatigue.

    sending huge turtle hugs, Sharon x0x0x0x0x

  • Heli's avatar
    Heli
    Member
    10 years ago

    thanks Karen - I have just been for a little walk and will rest now

  • Heli's avatar
    Heli
    Member
    10 years ago

    Thank you for your lovely supportive comments Marls

  • Cook65's avatar
    Cook65
    Member
    10 years ago

    Sorry, accidentally hit send.  Keep up with your little walks. The drs say that exercise helps with the fatigue. Even small amounts. 

    Don' t worry about chaotic thoughts on here.  Here is the one place that you can express how you feel with out fear of being judged. Take care. Karen xox

  • Cook65's avatar
    Cook65
    Member
    10 years ago

    Hi Helena

    I can't speak for the mets side of things but with regards to the chemo, even though you stopped the treatment, the residual effects can last a while. I finished 6 rounds of TCH in October last year, 33 radiotherapy sessions in December and herceptin about 9 weeks ago. I still struggle with fatigue on and off on a fairly regular basis. My onc has told me it could be a year before I start to have my old energy levels again. Depression and anxiety impact on that as well. A counsellor may help with that side of things as well as giving you some strategies with dealing with the changes you are experiencing in your health and well being. 

  • scotty's avatar
    scotty
    Member
    10 years ago

    Hello Heli, I have just read your post and what can I say xxx I have heard some people live for years now with cancer and it sounds as if the oncologist is still positive about you so that's a good thing as he knows what he is talking about .After chemo it takes sometimes a couple of years to pick up so here's hoping this happens for you Have spinach, berry and banana smoothies mixed with distilled water that should give you some energy Heli. Also google BICARB AND LEMON FOR CANCER pretty amazing some of the testimonies just do what you can for the moment and get some anti depressants to help take the edge off your anxiety and I will ask God to give you better health you may want to ask him too love to you Christine xxxx PS I suffer extreme anxiety too not pleasant xxxx

  • Marls59's avatar
    Marls59
    Member
    10 years ago

    Hi Heli,

    welcome to this wonderful site.  I have not posted for a very long time but like to look in now and again as the online network has been such a support to me in the past and its comforting to know we are not alone and to share our feelings and fears with others who truly understand.

    I hope some of the other Ladies with metastasis post and share their experiences with you.  It sounds as if you are going through big changes just now and that must be daunting and frightening, I am so pleased your Husband is there supporting you.

    Please keep posting, there is always someone who will answer.

    Sending you a big gentle hug,

    Marls

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