Life after Chemo

Hello everyone. I am new on here. Thanks for having me. Have had last of Chop Chemo mid August. Had six treatments, three weeks in between each. I have T cell NHL. Think I’m slowly getting stronger and my hair is growing back, grey though. Can’t wait to get my blonde on again. My trouble is some days I have no energy and I ache badly mainly in my back but arms and legs too. Just wondered if this is normal and if anyone else having or had same trouble. Happy and Healthy New Year to you all xxx

Comments

  • SunshinedaffSunshinedaff Posts: 877 ✭✭✭✭✭
    Hi @gloden02

    A very warm welcome to you.
    Good to hear you are recovering, it is a slow progress for many, it has been that way for me. I had breast cancer, diagnosed in 2015, am now on medication to help prevent it returning.
    I had a different chemo to you, but for a long, long, long time afterwards I had dreadful pains in my joints, mostly legs, back and feet. I would suggest you speak with your oncologist, as I did. They arranged for me to have a Dexa scan, which checks bone density, referred me to Orthopaedics to have x-rays, physio, etc to try and help. I was left feeling like an old woman since chemo, shuffling about everywhere, unable to stand or walk for long. It is only this year that it had begun to improve, but not before after having Mri's, CT scans revealing I had fractures in both my feet! On top of everything else. Haha. 
    It was when I joined the Live Better With FB group I found I was not alone in having these pains. 
    Glad your hair is growing back, mine is completely different, gone from red to very dark, which was a surprise. 

    Wishing you a very Happy New Year and a healthy and happy 2019.

    Others in here are very friendly and supportive. Here to help each other.

    Best wishes

    Lou x




  • RobertARobertA Posts: 727 ✭✭✭✭✭
    edited December 2018
    Good afternoon @gloden02 

    I haven't had chemo, but I am delighted to hear that you are getting stronger and that your hair is growing back.  Great to start the New Year on a positive note. 

    Welcome to our friendly community.
    Rob X 

  • gloden02gloden02 Posts: 51 ✭✭
    Hi Lou. Thank you so much for your reply and kind words. Made me feel lot better. I will tell my oncologist about these aches and pains. Think we worry more about every little lump and pain after cancer. Shakes your confidence in yourself. Strange the hair the way it grows back. I had some light brown with blonde streaks put in. I know I should be grateful it’s growing back strong but hate it all grey like it is. My daughters say it is all in and elegant but I don’t care for it all. Looks better with a bit of make up and a pair of hoop earrings though. Happy 2019 and a Healthy one. Hugs xxx
  • gloden02gloden02 Posts: 51 ✭✭
    Hi Rob. Thank you for your reply and kind welcome. Glo xx
  • SunshinedaffSunshinedaff Posts: 877 ✭✭✭✭✭
    @gloden02

    Hi Glo, you are right, we do worry afterwards. Don't be shy to tell your Dr though, they would rather be able to say 'it's nothing' and reassure you, or deal with things quickly.
    I understand about your hair, if mine had returned grey I'd have coloured it too. But hopefully you can enjoy new hairstyles as it grows. 

    Lou x
  • NicitaffNicitaff Posts: 1
    Just joined this forum and reassured that I’m not the only one with an aching body, feeling like a 90 year old. 
    Had breast cancer treatment and I guess all that poison pumped into us will damage all the muscles and joints for quite some time. 
    Find it so frustrating that doing a basic thing like some painting left me with awful pain in my shoulder for weeks and have a new found love of Dr marten shoes for the painful feet. 
    They go with my new butch short dark grey hair though. (Used to have a huge mane of highlighted long hair) 

    Its just a new version of us we have to adapt to. I don’t suit the same clothes I used to wear. Need collars to balance out the thick cropped short hair. 

    I know what what you mean about imagining every lump or pain is something sinister. I have lumpiness in my neck and the first thing you do is google NHL symptoms. I have had a stinking cold for weeks so probably just the glands up from that but will be reassured when I have a pET scan in jan. 

    You think Radiotherapy will be a doddle after chemo but the effects of that were dreadful too, probably worse actually. And then bone strengthening treatment even worse. Doc agreed not to give me any more of that now. And then the anastrozole which I just can’t tolerate. Makes me feel like curling up and dying. I didn’t go thru all I have in the last year to feel that bad. 

    So im just going to try and get myself back to health and fitness and I have a much calmer happy life again to keep well as long as I can that way. 
  • gloden02gloden02 Posts: 51 ✭✭
    Hi Nicitaff. Got up this morning back ache again. More painkillers. I’ve had couple of attacks of Cystitis too. Fed up of feeling ill. Thought I’d start to get strength back sooner. I too find myself dressing differently because of the grey cropped hair. Higher necks or turn collar up. Hair is growing. Can’t wait to have my light brown with blonde highlights again. Good to talk to other people going through it. Makes you feel less alone and scared. Let’s keep in touch. xxx
  • LouiseJLouiseJ Posts: 361 mod
    Hi @Nicitaff 

    Thanks for the tip about Dr Marten's, I didn't realise they would be a comfortable shoe/boot. I have only been able to wear Skechers for almost three years and even they don't help sometimes. My daughter has a pair of DM'S, they are her 'go to' pair, but I thought that was more as a fashion statement! I will have to look for some in the sales, maybe they will help my feet.
    I am sorry to hear you are having a really tough time with the pain. For me it is only this year that I have begun to see a slow improvement. I did begin swimming couple of years ago, I think it is helping me a lot with mobility, though I look like a crock getting in and out of the pool! 
    I do get what you mean about feeling worse after going through everything. The pain and lack of mobility was so frustrating, and was harder to cope with than the treatment in a weird way. But I am determined to live as well as I am able, making the most of life, some days are harder than others, I have learned to give myself a kick up the backside if I begin to see signs of a downward spiral.
    I really hope you start to see an improvement soon, and that your cold clears up very soon.

    Take care, 

    Lou x


  • LouiseJLouiseJ Posts: 361 mod
    Hi @gloden02

    I'm the same as you, my back always bad in the morning, well throughout the night too really, I have real trouble even turning over etc. At first I thought it was the mattress, so we got a new one....hahaha, noooo, hasn't helped. It didn't occur to me my back pain was related to anything. I am not very good at taking regular pain meds, not sure why seeing as I take a cocktail of other meds every day. Maybe that's why? 
    A friend of mine who is a chemo nurse, explained it as a trade-off. Do I put up with the pain, or take regular pain meds, however irritating, and get some relief? I am just terrible at doing it. Must try harder! :)
    Hope you have a good day.

    Lou x


  • gloden02gloden02 Posts: 51 ✭✭
    Hi Lou and Nicitaff. Having a bad day today. Got Cystitis again. Taking antibiotics and loads of water. Back ache and feeling so low. Think my immune system is so low I’m picking up things. So fed up feeling ill every day. The only day I felt ok was Christmas Day for quite a few days. Sorry about the moan. Just needed to tell someone. Hope you both having a better day. Glo xxx
  • LouiseJLouiseJ Posts: 361 mod
    @gloden02

    Hi Glo, 

    So sorry, that's just horrid for you, it's ok...moan away. Is cranberry juice a myth for helping with cystitis? Although you are on antibiotics, hope they kick in soon. 

    I think we will go out into town this afternoon, have a look at the Christmas lights before they take them down! Have been avoiding the crowds, so partly not our best plan...but hey ho.I will make sure we have coffee out, one of my fave things to do.

    Sending you a hug, thinking of you.

    Lou x

  • gloden02gloden02 Posts: 51 ✭✭
    Hi Lou . Thanks for getting back to me. Just resting and drinking water and hoping I start to feel better soon. Have a lovely afternoon and enjoy your coffee. Sometimes just getting out of the four walls really bucks you up. Glo xx
  • RobertARobertA Posts: 727 ✭✭✭✭✭
    Hi @Nicitaff and welcome to the group. I am fortunate in that I have not experienced chemo at this point so I am not in a position to comment on that other than to agree that when googling symptoms/lumps etc. I am inclined to concentrate on the worst scenario - not a good idea. 
    I am pleased that you have joined us - it is a friendly and supportive group and it is reassuring to chat to others who know what you are going through. 

    Hi @gloden02  Glo. Moan away. One of the great things about this group is that we are able to say how we really feel to one another without putting pressure on friends and family. 
    Rob x
  • RobertARobertA Posts: 727 ✭✭✭✭✭
    Good afternoon @LouiseJ Lou. 
    I like your comment about trade offs.  I told my doc I did not want any more pills when he prescribed some for my polymyalgia rheumatica (not cancer related thank goodness) but they have transformed me and now I would break and enter the chemists to get some more if I ran out. 
    Rob xx
  • gloden02gloden02 Posts: 51 ✭✭
    Hi Rob. Thank you for your kind words. Mean a lot. Get so down and worried. Hope you are having a better day. Glo xx
  • LJMLJM Posts: 7
    Back pain side effect too... and can't comfortably stand for long periods of time any more... hoping it gets better.  Good luck.
  • PearlonePearlone Posts: 3
    gloden02
    I have found a number of people suffer with fatigue, pains and achy-ness. Including those who've had treatment for Lymphoma. Do you know there's a Facebook page for NH Lymphoma in UK? It's specific to UK because of the NHS treatment. 
    It's very useful. There's also a social FB group. 
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