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  • jacksprat_x1jacksprat_x1 Posts: 323 ✭✭✭✭

    Hi Lesley thanks for that! I think that’s one thing we are lucky about! I was told I shouldn’t loose my hair but it might go thin. I shall be very grateful if this is so. X

  • OconnormOconnorm Posts: 9

    I was on chemo tablets for 6months 2 wks on week off my hair thinned felt tired lots dioherea which is not great with colostomy bag lots pins needles in hands feet but I still worked my boss was fab if I had to leave it was nt a problem finished mine October

  • jacksprat_x1jacksprat_x1 Posts: 323 ✭✭✭✭

    Hi @Oconnorm

    I heard it’s quite tough on tablets having a Colostomy bag. My specialist cancer nurse told me that and said I’m glad you have a Picc Line in for 6 mths it will be easier for you having a colostomy. I wasn’t happy about the intravenous line at first but it has been good. So convenient it is for blood tests, they do it when I have the dressing changed and line flushed out. No having to go to blood clinic. I’m on a two week cycle. Of course you have to attend hospital more often tho.

    I hope your pins and needles stopped and that your haven’t been left with permanent damage. Well done for keeping working. I work in a chemist and cannot come into contact with the millions of germs that walk in there everyday particularly at this time of year.

    I have the chemo for 6 mths.

    Hope you ok?

    Take care.

    lv Jackie x

  • LesleyLesley Posts: 155 ✭✭✭

    Hi my peeps,

    Hope you are feeling well as expected today, that is all we can hope for! I get really confused on what link to post on, I'm a bit of an ostrich so I like to post on off tract ,it quite frightens me with all this medical stuff, I think they (the meds) get frustrated with me because they keep asking me if I have any questions! I don't want to know what's happening, yes maybe I'm in denial, but that's the only way I can deal with it,I don't want to know the prognosis, but that is the way I am, bit of a coward I think!🤔😔

  • jacksprat_x1jacksprat_x1 Posts: 323 ✭✭✭✭

    @Lesley

    Hi Lesley, just come up on the bed for a little rest! I hope it doesn’t mean I sleep the evening away! Came back from hospital because my pump had finished and they remove it.

    Been cold today hasn’t it?

    I am sorry if I have scared you with too much detail. I will have to keep that in mind in our posts. We are all different aren’t we? I’m the sort that what I don’t know frightens me and I have to know the worst that could happen so that If it doesn’t it makes me feel better. Oo err what you discover about yourself on this site hey?

    I’ve got herb chicken and roasted herby veg in the oven so have asked Norm to disturb me soon. Don’t want to miss that!

    I just couldn’t stay up any longer!

    I hope you had a good day and stayed warm.

    I noticed some people post @Lesley.....for instance so if I want to speak to an individual or a group I just type all the names in so it gets to them. Hope thats right.

    Will say Tara for the minute and close my eyes. Take care. lv Jackie x

  • RobertARobertA Posts: 1,273 ✭✭✭✭✭
    edited March 2019

    @Lesley

    Good evening Lesley,

    You post wherever you want. We will find your posts wherever they are, they are always worth reading,

    Everyone deals with things in their own way and your way is as good as any. Will be thinking of you tomorrow dear friend.

    Rob x

  • LesleyLesley Posts: 155 ✭✭✭

    Oh! Rob love you! Yes very confused! Chemo,fog! Fibro fog! Merlot fog! Never mind! Thanks Jackie, Love the sound of Chicken and herby veg!

    😘xxx

  • jacksprat_x1jacksprat_x1 Posts: 323 ✭✭✭✭

    Hi Lesley,

    just resting! It sure smells good.

    Hope tomorrow goes well.

    Lv J x

  • LesleyLesley Posts: 155 ✭✭✭

    😘

  • SunshinedaffSunshinedaff Posts: 1,445 ✭✭✭✭✭

    Good evening everyone, @Lesley , @jacksprat_x1 , @RobertA , @Oconnorm ,

    Wow, you lot have been busy here! haha.

    I really hope you have been resting Jackie, enjoy dinner, I hope you are able to eat some.

    Yes, you can type the @names in, especially if you are responding to someone. But it doesn't matter if you don't all the time. I have my notifications turned on, like many others probably, and so see when someone has posted.

    Lesley, you post wherever you like, as Rob has said we will see when you do. No, you are not an ostrich! Just dealing with a very difficult situation the best you know how. Everyone is different, handling things in their own way. The goal is getting through it...you are doing brilliantly...even though you may think you are not.

    Take a deep breath, try and rest and relax this evening, sending you lots of hugs.

    Lou xx

  • jacksprat_x1jacksprat_x1 Posts: 323 ✭✭✭✭

    Hi Lou, dinner was lovely thank you. Definitely got an appetite at the moment and food still tastes good so far.

    Yes been resting since Friday. If I hadn’t had to go to hospital to have chemo pump removed I wouldn’t have gone out today. The wind is so cold isn’t it?

    I think it will be a quiet week. Norm has a 60 hr week and both son and daughter and all children have stinking colds! I won’t have them for company for some time! Still I need the rest so that will be good. It’s just me and Jasper the retriever. Bless him. Best friend anyone could have!

    Have a good week all.

    Take care

    Lv Jackie xx

  • SunshinedaffSunshinedaff Posts: 1,445 ✭✭✭✭✭

    Hi Jackie,

    That is so good, you still feel like eating, that's great.

    It was so windy today, we went into Bournemouth to the cinema, I almost got carried along by the wind, very biting too.

    We will still be here for you, so you will have virtual company whenever you want it, 😊, resting is good, very important. Pets are so great aren't they, my Charlie boy is curled up next to me, on my dressing gown. We share it now! haha! Jasper will understand how you are not well, I am sure he is a real comfort all the time.

    I hope you manage some sleep tonight, see you tomorrow.

    Lots of hugs,

    Lou x

  • jacksprat_x1jacksprat_x1 Posts: 323 ✭✭✭✭

    Aw you are lovely Lou. Thank you.

    Charley will keep you warm. What film did you see.

    My son in law messaged me to say he was nearly blown away by the wind and to wrap up warm! Bless him. It was hard to believe, he is built like a rugby forward! Haha. It must have been windy. So sweet of him to be thinking of me.

    Pets are our furry children I think. About two weeks before I fell ill Jasper would not leave my side! He kept putting his paw on my leg. It got quite annoying at times and now I think he was trying to tell me something bless him. When I came home he was as gentle as a lamb and sat beside me quietly for days. Sixth sense I reckon.

    I’m off to bed soon I’m sure I will sleep tonight.i has about 7 hrs last night it was lovely! I took the advice of the nurse, she said take 2 steroids at breakfast and drop one at 2pm over 4 days instead of 3. It seems better than last time. I was so revved up before!

    Hope you sleep well.

    Big hugs

    Love Jackie x

  • jacksprat_x1jacksprat_x1 Posts: 323 ✭✭✭✭

    Sorry Charlie! Xx

  • jacksprat_x1jacksprat_x1 Posts: 323 ✭✭✭✭

    Hi Lou,

    Jasper made me smile the other day. Dad missed his walk out cos wasn’t very well. The next day he kept sighing and looked bored so I got the lead out for the first time in ages and read him the riot act before I took him for a little walk around the block. He is a strapping extra large dog and even when well he is a bit strong for me. Before we went I said right Jasper if you pull we come straight back in. Mum can’t manage you pull. Well he walked along as if he was a little dog out with an old lady! Amazed! Haha.

    Lv Jackie x

  • SunshinedaffSunshinedaff Posts: 1,445 ✭✭✭✭✭

    Ahhh, that is so sweet, see he knows! Charlie was the same with me leading up to my diagnosis, kept pawing at me.

    We went to see the new Avenger film, Captain Marvel. It was brilliant! I really enjoyed it. I need to watch all the others now! haha.

    Sleep well,

    Lou x

  • jacksprat_x1jacksprat_x1 Posts: 323 ✭✭✭✭

    Hi Lou,

    They do know!

    That film sounds good! I will watch out for that. The last film I saw was How to Tame your Dragon! I took Teddy my 5 year old Grandson the week before chemo started. It was lovely! Just us two. At the end he ran to the space in front of the screen and danced around like Billie Elliott with 2 other little boys! He said come on Nana dance! O I have to look after the coats and bag Teddy! Haha. I asked the lady cleaning up do many of them do that and she said o yes! So funny and sweet!

    Night night here’s to many zzzzz for us all!

    Lv Jackie xx

  • GillyflowerGillyflower Posts: 2

    Hello all, I’m new to the forum. I wasn’t sure about joining as I don’t have a stoma. Although the tumour was large and nasty (I saw the scans) amazingly it had not spread and I was able to have a laparoscopic sigmoid colectomy. I feel sort of odd one out, is anybody else in the forum without a stoma?

  • SunshinedaffSunshinedaff Posts: 1,445 ✭✭✭✭✭

    @Gillyflower

    Hello! Lovely to ‘meet’you! You are very welcome here 😊

    It is always brilliant to hear good news like yours is, it is encouraging for everyone to hear that your treatment was very successful.

    Please do not feel like the odd one out! A stoma bag is not a requirement to be part of this lovely community. 😊

    The very fact that you have had to endure the horror of being diagnosed with cancer and all it entails, is the very reason you’re here.

    Although successfully dealt with, no doubt you will have had to work though a myriad of emotions and thoughts, fight the fear that tries to overwhelm you, in order to be where you are today. Your experience may well be the very thing someone needs to hear to encourage them in their own fight.

    I sincerely hope you will come and chat here often. I hope your recovery is going well.

    Lou x

  • GillyflowerGillyflower Posts: 2

    Thank you for your lovely welcome! I think I’m still trying to absorb it all, as everything happened very quickly once I was diagnosed. I will try to get my thoughts together and share my experience.

  • 4Gretton4Gretton Posts: 39 ✭✭✭

    Hi Capox gang. Your descriptions of the affects of this chemo brought back memories. I too was on this . Infusion at hospital and 10 days of tablets at home(first4 days with steroids also) 4days off all meds and then back to hospital to start the 14day cycle all over again. I too found that the side affects were accumulative.

    My tips....I think one of the things to be careful with is the peripheral neuropathy. My consultant decided against the last round of chemo because it was so bad. I had tried to brave it out. I wonder whether I should have spoken up earlier as that is something I still suffer from. So my advice here would be to be open with the docs. It’s not being a whimp. They don’t know if you don’t tell them.

    Keeping warm helped with the neuropathy. Keeping warm is something I have a problem with(sorry all you people who have the exact opposite with sweats) bedtime for me now is warm pjs, bed socks, heated underblanket and a hot water bottle and when neuropathy in hands bad too- gloves! Such a sexy beast!

    Oh the cold drinks and cold air....fortunately I was warned about this, but so easy to forget-a nightmare isn’t it... but it does go.

    Regarding hair... mine was a bit thinner. My main hair problem seemed to be that after every op I could guarantee that about 3 months later I would shed loads. Have to say that hair loss for some reason wasn’t a major concern for me. I might have felt differently if it had all gone- who knows. I think I just got so fed up with all the false friends that would approach me with head tilted to one side, (you know the look!) with the sad ☹️ face and the comment-“at least you haven’t lost your hair” Maybe it would have offended them more than it bothered me.

    I also kept ginger biscuits by my bed. Like in pregnancy days I found nibbling on one of these in the morning helped with nausea

    Hang in there on that horrid chemo @jacksprat_x1 and @Lesley you’ve got the team here cheering you on

  • RobertARobertA Posts: 1,273 ✭✭✭✭✭
    edited April 2019

    @Gillyflower

    Hi there

    Lovely to hear from you. I don’t have a stoma bag either but that doesn’t stop me from rambling on. We love to hear from anyone who is affected by cancer and we often chat to friends and family of cancer sufferers too.

    So pleased that your cancer has been removed. As Lou said, hearing about successful treatment is so encouraging and it is something we love to hear about and share in.

    Lou also mentioned the emotional side of cancer and some people, myself included, find that it can take a while to adjust fully, even after the treatment has finished. Take your time and be kind to yourself. I found that sharing my thoughts with the lovely people in this Community is so helpful and I hope that you will keep in touch.

    Rob x

  • RobertARobertA Posts: 1,273 ✭✭✭✭✭

    @4Gretton

    Love your informative and entertaining posts. 😀. I have not had chemotherapy though I know from the posts in this community that it is a very challenging experience. I am full of admiration for the patient tolerance and kindness of those of you who have to endure it.

    I know what you mean about false friends. I know who mine are and I have gradually moved away from them. Who needs them when I have the lovely folk in this community to chat with.

    Rob x

  • 4Gretton4Gretton Posts: 39 ✭✭✭

    Hi@Gillyflower ...yes me!!! I’m without a stoma and am absolutely full of awe for those who have them and cope so well. I had the full talk from the stoma nurse before surgery so was certain I would be waking with one. I feel bad now for the way I sobbed on her shoulder! Was such a scaredy-cat in that regard

  • jacksprat_x1jacksprat_x1 Posts: 323 ✭✭✭✭

    @4Gretton

    @Gillyflower

    @RobertA

    @Sunshinedaff

    @Lesley

    Hello Dear Friends,

    Lovely to hear from you all. I had to go hospital to see Oncologist today and have bloods and Picc Line clean. This last Chemo session left me depleted again. Awful electric shocks to fingers lips etc again but the weather has cooled off! More padding needed! Gloves hats scarfs, keeping warm. Opposite to you Lou😂

    Gretton thanks so much for your post! I read it in the car park before I went in. Such good advice to tell them what’s going on.

    They said my Oxiplatin component can be reduced from 100% to 80% with the Fleurocil the work horse he said given by pump over 46 hrs will stay the same. He feels full Oxiplatin is too much and hopefully this will help in the future and has been a struggle for me. So thank you so much for the advice I may have just struggled on without your comments today! Your a star! Please don’t feel bad that you did have to have stoma. That is great that you didn’t. You had more than enough to contend with.. I really have found that component the least worry funny enough! I was dreading it and it so convenient to me now. Made good friends with it 👯‍♂️. I hope you having a good day. Take care x

    Hi Rob,

    I’m so glad we all have this platform to find like minded people here to share and care💖 Hope you ok today. Weather has changed, considerably cooler by this coast today! Xx

    Lesley and Gillyflower hope you are doing ok today. Shame the weather is cooling down but it will be back. Have a good day!

    Hi Lou,

    I hope you are ok today. How are you? It’s been a tough few days but hopefully things will pick up before the next chemo.

    We will keep onwards and upwards! Have you drunk any of the new wine yet?

    When we got home Norms appointment for his Angiogram was on the mat 3 May so we are getting somewhere!

    Thanks for all you do to keep us all up!

    Of to rest now! Speak soon.

    Take care lovely people!

    Lv Jackie xx🙋‍♀️

  • SunshinedaffSunshinedaff Posts: 1,445 ✭✭✭✭✭

    @jacksprat_x1 , @RobertA , @4Gretton , @Lesley ,@Gillyflower

    Good evening lovely warriors!

    Oh wow! It has been busy on this thread today, how brilliant!

    @4Gretton , I just love reading your posts, they are so full of compassion, info and wit! It is so helpful. I am guessing it is the type of drugs you are on, as the others that causes the cold pain? Complete opposite to me, haha, although, I do remember my teeth being in agony for at least two years, my dentist could find nothing wrong. He took it to a conference to discuss, so he could find out more!! Definitely an effect of chemo he thinks. I don't have that level of pain anymore thank goodness, but I still struggle with cold drinks especially, sometimes hot.

    HAHAHA, you made me laugh with the tilted headed friends! 😂😂 as Rob says, I think we can do with keeping distance from shallow friends, its funny my friendship circle is very small now. Unless I am just billy-no-mates now, haha, 🤣

    @Gillyflower

    We are a mad lot too, I don't think that its just the meds causing it either, hahaha, I am sure you will get to know us soon. 😉. Take your time with sorting through your thoughts, processing all that has happened can take a while, some of your feelings may surprise you, if you need to chat with us, we are here.

    @jacksprat_x1

    Hi Jackie, I am sorry its been a tough time for you, but its good the meds are being adjusted to make it more tolerable for you. I hope you are resting now, and warm! Under that blanket I hope, mind you I think we could all do with one of those today, its been so cold.

    @Lesley

    Hi Lesley, sending you a gentle hug, hope you are still in bed resting, letting those meds do their job! Chat soon my friend. xx

  • jacksprat_x1jacksprat_x1 Posts: 323 ✭✭✭✭

    Hi Lesley,

    Sorry it’s late but so was just wondering how you are doing after your meeting with nurse.

    I hope you have been able to enjoy the weekend and get out in the sunshine.

    Take care Lesley.

    lv Jackie xx🙋‍♀️

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