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Still very very weary

Ann1995Ann1995 Posts: 4

New to your site had first batch of chemotherapy last Thursday all day and on tablets but still seem totally drained silly question but is this the norm

Thank you

Tony Seeley

Comments

  • SunshinedaffSunshinedaff Posts: 1,287 ✭✭✭✭✭

    @Ann1995

    Hello Tony,

    To be honest I am not surprised you are finding it very draining, you are in your first week, day 7 I gather. Depending on which chemo drugs you are on will affect how they react in your body. I was on a three week cycle and I found the first 7-9 days the toughest. The next 7 days was my low immunity week, where I was particularly vulnerable to picking up infections. The last 7 days of each cycle I would begin to pick up again just in time for the next hit!

    The side-effects were cumulative so this timeframe differed sometimes.

    I did find I had to take each day as it came, some were much harder than others. I do hope you will see an improvement soon in how you are feeling.

    Welcome to our community, it is great you have found us, Everyone is very friendly and supportive and I hope you will find it really helpful for you too.

    If you have any other questions or would just like to chat about anything, we'd love to hear from you. We all try and support one another through whatever it is we are facing.

    Hope to chat soon.

    Lou x

  • jacksprat_x1jacksprat_x1 Posts: 306 ✭✭✭✭

    Hi Tony,

    Welcome to our community. I found it invaluable when I was diagnosed with bowel cancer in Dec 2018. I’m doing well at the moment.

    I think there are many people who cope quite well and indeed even manage to work whilst on chemo. Unfortunately I was one who didn’t. As my op was an emergency I had a big op to remove the tumour and some of my bowel leaving me to get used to a colostomy.

    I tolerated the first infusion well. It went downhill pretty quickly after that. I had 4 hours having the meds by drip at hospital, then was sent home with a pump attached to my PICC line and returned to hospital 48 hrs later to have it safely removed. My regime was every other week for 5.5 months. I found the steroids a pain as they kept me buzzing at night and day then I would have a crash! I probably only had a couple or three days each two weeks where I felt I could leave the house! What I would say is that the lovely kind people on this site got me through it with caring and humour! 😂

    If I was asked how I got through it, it was appreciating the love of family and friends and taking pleasure in all the tiny things. The bulbs coming up, the birdsong, appreciating music and my lovely chats with Lou and Rob on music and everything else! As time went on I got more and more tired but was always thankful that I survived the op. I would say it’s normal to feel washed out and to just give in to it. Rest when you need to. Try a little walk up and down the street if you can so you don’t feel cut off from the outside. I thought I’ve worked since I was 16 and this is my time now to concentrate on me, having brought my family up and looked after my Dad and Stepmum through illness.

    I hope you are one of the lucky ones to be able to function normally. But if not this treatment and tiredness will pass. I took one day at a time. I’m back to normal almost now.

    I did find that food tasted weird for a week so it was the best diet I ever tried!

    I hope your treatment is kind to you and know that you are not alone and if you need to vent do it here! Take care.

    Lv Jackie 🙋‍♀️

  • JR124JR124 Posts: 37 ✭✭

    It's a tiredness no one can describe unless they have had chemo isnt it? I'm still exhausted! Finished chemo in July and now on iv maintainace Avastin. Rest when you need to and try not to fight it is all I can advise. It gets better with time. X

  • dave4753dave4753 Posts: 4

    hi Anne1995 ,I found my chemo was steroids wed, little sleep, chemo thurs, n more steroids fri n sat then felt like a 5 day hangover, then tired for a week then sore dry eyes but feeling better, then repeat, it's a journey from one place to another, not the nicest but essentially for us, I went vegan too, my cancer went dormant 5 months later after a terminal diagnosis, I still have some active cancer, I think from chemo missing a few cells and they've been multiplying quite happily undisturbed for 10 months, I wish you and your family all the best with this there will a successful end to yours and my story good luck 😊👍❤👊

  • jacksprat_x1jacksprat_x1 Posts: 306 ✭✭✭✭

    Hi JR and Dave,

    JR and Dave you hit the nail on the head. You cannot possibly know what it feels like till you have it and it does sometimes feel like a 5 day hangover! I must admit I think oo I could sink a bottle of wine then I think of that feeling and think its not worth it! Haha! I have the odd glass.

    My husband admitted he didn’t fully understand the tiredness to start with. When I said I’m so tired, to the bones, he would sometimes say your always tired. I can’t blame him no-one knows till they have experienced it themselves. A year on he now fully appreciates it. He has been a fantastic supportive partner though. I don’t think I always realised how hard it was for him to function, working a 12 hr shift and coming home to someone who hasn’t got out of bed all day. He had a couple of weeks leave when I first had my operation. Even the days after my bowel op I was up and doing little thing but it was the chemo that got me! As time went I paced myself and managed to start the chores again. You just have to give in when you need to!

    Dave I’m very interested in your story about going vegan I am going to try. I’m 80% vegetarian, my husband has been vegetarian for 30 years.

    Take care all and have a good weekend lv Jackie 🙋‍♀️

  • rickydrickyd Posts: 19 ✭✭

    Hi Tony,

    This is my first post as well. Not sure what drug you are on, but I had 6 cycles of DOCETAXEL at 3 weekly intervals starting in June 2019. If, like me, you go online to check out the side effects of the drugs you are taking, you will end up thinking What the hell am I doing this for? The answer, of course, is that you are trying to save or extend your life and this is the most positive way of doing it. That said, it can be a difficult journey. There are many chemo side effects that are very common, but we are all different and so there are others that affect only a few of us.

    When I started my chemo, I would have loved to have had access to 1 or 2 blogs which spelt out lots of the problems I might encounter. As it was, I was constantly taken by surprise at some of them. Your tiredness happens to virtually everybody, especially at the beginning, but I found that it got a little easier as time went by. My only advice would be to sleep whenever you feel like it. Perversely, you may also suffer badly from sleeplessness. I found myself going to bed at 9 pm and getting up anytime between 3-5 am. I would go downstairs and watch TV or read a book until my wife got up. I would doze off in the chair most afternoons. Just let your body do what it wants.

    Taste buds get zapped pretty badly. You may find that a lot of your food tastes ‘metallic’. All mine tasted of salt, especially anything containing tomatoes. So, out with tomato sauce and all Italian food. I compensated by eating thinks like shepherd’s pie with gravy, or Chinese food. Worst of all was that red wine was affected as well, but it’s not a bad idea to cut right back on drinking as it can affect the efficiency of some of your drugs. I suffered badly from mouth thrush. My tongue was thickly coated in an ugly looking green/yellow muck that made everything taste even worse. You need to be careful with this one as it can spread down the back of your throat. Get straight in touch with your GP and they will prescribe something. I found it came back again each time I started another cycle. I found sucking raw pineapple helped. Also coating my tongue with curry sauce. Anything that causes a burning feeling on the tongue seems to do the job.

    I need to mention constipation. Don’t ignore this. It is a horrible feeling straining away when you desperately want to go but nothing happens. I had an impaction 3 times and it really psyched me out. I tried the usual off the shelf stuff, but none of it worked that well. I found sachets of powder called LAXIDO was as good as anything.

    Chemo can affect muscles and nerves. My worst side effect was that I seemed to lose control of my legs. Picture a guy staggering up to the finish line after a marathon, with his legs turned to rubber. My balance was also affected. I needed to use a walking stick (hiking pole) to stop me wandering all over the pavement and to provide support if I tripped. Walking long distances was out of the question. As time went by, I developed Peripheral Neuropathy in both hands and feet. This is where nerve endings are damaged (temporarily I hope) and give false information to the brain. My fingers on both hands felt a little numb for quite some time. The feet were worst. Both feet, at various times suffered badly from numbness, or felt frozen, or felt as if they were thawing out after having been frozen. My left foot was also subject to searing pains that felt like an electric shock. Nothing you can do about any of that. Normal pain relief will make no difference.

    I discovered one day that I could hear my heart beating in my chest (very loudly as it happens). This is a form of Tinnitus affecting blood vessels around the ears. Apart from non-compliant legs, I suffered from dizziness fairly often. I also got out of breath very easily, especially when walking upstairs.

    You will probably have received a little red card warning you about NEUTROPENIC SEPSIS. I got this halfway through my 2nd cycle and spent 3 days in hospital. Chemo knocks out your white blood cells so you are especially vulnerable to infection. You are most susceptible around 7 days after your chemo and that lasts for approximately 7 days. Be especially careful during these times. Get yourself a supply of disposable latex gloves and don’t be afraid to wear them often. Especially in supermarkets, doctors surgeries, hospitals etc. Don’t take any chances.

    Depending on what hospital you attend, there is an Android App called MyChart that might be available. On this you will get details of all your appointments and the results of all your blood tests. Check it out.

    I hope some of this helps Tony. I actually welcomed my chemo. I never thought I was doing anything positive to deal with my cancer until it started. The main advice I would give you is this. Try and keep Positive. Take one day at a time. Don’t be afraid to call on your GP if needed. I found mine tremendously helpful. Don’t shut out the people around you. They are suffering as well. Keep a diary. Write down how you feel, what side affects you are having and how you are dealing with them. Use it as an outlet to say the things you can’t say openly in front of your family. But also use in to list some of the things you really want to do once your chemo is over. Keep it together. You can do this.

    Hope all goes well for you. 

  • jacksprat_x1jacksprat_x1 Posts: 306 ✭✭✭✭

    Hi Ricky, just realised I should have said life gets better when you finish the chemo (not cancer). 🙋‍♀️

  • Eve66Eve66 Posts: 1

    Hi I’m very tired most of the time had 2 brain tumour ops over the past 7 years..under the queen Elizabeth hospital under a brilliant man the prof they call him he’s retired now and no cure was given 2 and half years just going into five years how do I deal with my tiredness?

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