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Sarah54's avatar
Sarah54
Member
12 years ago

Round 1

As promised:

I hope this is helpful to others as I know I go searching just for some validation in the wee hours of the morning.

Round 1 TCH Monday Feburary 24th 2014 (to shrink my over 10cm tumor underneath and a kinda of cauliflower on the surface) Broken humerus Oct 25th and plated Feb 5th. So my experience of doing nothing is driving me up the wall, watched too many films already and read too many books. It’s unfair as I would have loved the opportunity to just do nothing but not after learning to do not much and of course I had cancer which was tiring me growing such a horrible tumour. Life, be in it.

Steroids Sunday night, no sleep what so ever, steroids Monday morning and again that evening, again no sleep what so ever. The novelty was still happening and got lots done! I have been managering on broken sleep but nothing like 11 hours all night and it’s so lonely. Emotional disorder hit and wayward thoughts along with a throat that felt like the garden hose was down it, a mouth like a dirty bird cage and my teeth and mouth ached. Inside my nose very sore, feeling absolutely yuk but concentrated as you do to swallow vastes amounts of water and not much else. Everything tasted like a good aluminium foil roll.

Getting paranoid as I feel no one has any sympathy for me, still look normal. I still do everything around the home and currently I have 3 adults and one grand-child. I feel they are talking about me. I am often in tears, I often groan as my stomach churns, I have awful heart burn the shakes, bone ache and unsteady. I did not get herceptin this round that’s to look forward to next drip feed! Oh my arm aches and my tumour pulsates and no paracetamol allowed.

I am so happy to report that there were several minutes in everyday where I felt OK. I take lot’s of rests and stare into space continuous. I am fastidious about hygiene and spend a lot of time cleaning my bedroom and bathroom. I feel I smell all the time. I leave a bleachy bucked in the bathroom so I can smell clean. I have had the occasional bout of vomiting but not food just bile. The big D set in 3 day.........what a movement, I actually expected my brains or what is left in the pan. Had it ever since.

Insomnia continues and my mental health went way down low with obscure thoughts and not healthy at all. It’s the lack of sleep. I am so tired now I just lie in bed and can catch at least 15 minutes throughout the early hours. I just love 4am so I can get up and have a cup of coffee.

 

I have bloods tomorrow and then a wig appointment and Wednesday I am launching myself of the GP for sleep help. I cannot do this without sleep. I feel ok as to-day I remembered PRAMIN and took one at 4am and immediately felt better. Memory is shocking and sometimes cannot string a sentence together. I play millions of games of spider solitaire and I once was a guru.......never win now and it’s frustrating. Because I stayed in bed all night or maybe the PRAMIN I have had very good optimistic thoughts to-day and have virtually sorted the rest of my life out. I was just going to give in a few days ago.

I started knitting only squares and not what I am capable of which for anyone my age “Feather and Fan” Lol but it’s a start and great to get my left hand moving.

I am sacred shitless of this Herceptin and keep going back to research. I wish Cancer research would do a “something” on the complete self esteem of “gaining weight” it is obviously huge for some women, me too. At least allow me to lose some weight if I am going through this hell. I honestly don’t think this complaint should be overlooked. We lose our breasts, we lose ALL OUR HAIR and then stack it on............is there a GOD?

Everybody who has not had a better day, yours will come, keep your chins up Pink Ladies and no doubt I am going to be back with Round 2. One more ball and I am out of here.

Have a great Tuesday

Sarah

 

4 Replies

  • Robyn_W's avatar
    Robyn_W
    Member
    12 years ago
    I also struggled with the no sleeping thing.I was prescribed Temazepan,but I chose not to take it.I still have it in my bedside drawer unopened.On the nights that I couldn't sleep,I would read posts on the online network,or watch TV.It was only the first days after treatment,that I really didn't sleep much.I still firmly believe,that if you can make yourself get out of the house,and go for a walk,then you will not only feel better,but will also start to sleep better.It also helps with maintaining your weight,and if you drink plenty of water,you should be able to avoid fluid buildup as well.You have to stop doing everything round the house.Just STOP! And in the time that you would usually be doing house work/cooking stuff,then that is the time that you can get outside,and start doing for YOU.Its not easy,when you have always been the one that does everything,but you can do it.! Take care and let us know how it's going.xoxRobyn
  • Robyn_W's avatar
    Robyn_W
    Member
    12 years ago
    I also struggled with the no sleeping thing.I was prescribed Temazepan,but I chose not to take it.I still have it in my bedside drawer unopened.On the nights that I couldn't sleep,I would read posts on the online network,or watch TV.It was only the first days after treatment,that I really didn't sleep much.I still firmly believe,that if you can make yourself get out of the house,and go for a walk,then you will not only feel better,but will also start to sleep better.It also helps with maintaining your weight,and if you drink plenty of water,you should be able to avoid fluid buildup as well.You have to stop doing everything round the house.Just STOP! And in the time that you would usually be doing house work/cooking stuff,then that is the time that you can get outside,and start doing for YOU.Its not easy,when you have always been the one that does everything,but you can do it.! Take care and let us know how it's going.xoxRobyn
  • Bearteggie's avatar
    Bearteggie
    Member
    12 years ago

    So sorry to hear you have been having such a rough time with all of this.  My oncologist prescribed Temazepam too and I only take it for a few days following treatment.  

    Like Deane if I do nothing else in a day I make sure I walk for a minimum of 30 mins.  I am finding that by day 6 o7 I am spending less time resting and getting on with things I like to do or housework.  

    I am only halfway through my chemo treatment but am fully aware that life will not be the exactly the same as before once I have finished with this but I intend to reclaim as much of it as I can.   I expect to still be feeling very vulnerable at the end of this so I am considering seriously in investing in counselling to help me gain mental and emotional strength so that I can reenter the workforce etc as strong and as confidently as I can.  

    This site is wonderful as it is the only place where we all understand each other.  I hope that you will be feeling better soon.

    Joy xx

  • Deanne's avatar
    Deanne
    Member
    12 years ago
    Obviously we need the steriods to help our poor bodies handle the chemo but the side effects of the steriods can be pretty awful. Yes there is the no sleeping, then the depression that comes when you stop them and then the increased appetite and cravings for food that can cause the weight gain. BUT, you can do something about most of this. If the lack of sleep is really a problem, there are tablets to help with this. I personally just went with the lack of sleep because I knew that it was temporary and I just went with it. I would have lots of sleepy days when the DEX wore off. This is one time in your life when you just need to concentrate on YOU. Stop worrying about everyone else they need to realize that you are the priority for now. Life cannot stay the same when you are having chemo. Everyone needs to help out and you need to let them. Exercise was my one thing that I put any energy that I had into. If I managed nothing else, I went for a walk every day that I possibly could. Together with eating healthy as much as possible (the week I had chemo I just ate what I could) the exercise helped me to maintain my weight (I only put on 2 kg and lost them once chemo ended). I felt most of the 'weight gain' was fluid which did go away once chemo ended. If you keep as active as possible and watch what you eat, weight gain is avoidable, in my experience. The hair comes back (unfortunately on the legs and everywhere else too) and my breast prosthesis does not droop like my real breast did AND you are lighter without a breast or two (they actually weigh quite a lot so this is actually some weight you will loose!) I hope that you will see that much of this will pass. Your life changes certainly but it can be good again. Meanwhile please come and vent your frustrations as much as you need to on here. We understand how you are feeling. Take care. Deanne xxx