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  • RobertARobertA Posts: 569 ✭✭✭✭
    Good evening @Tre_
    well, I am not surprised you are not asleep.  You and your family have obviously had a really tough year and sometimes it is hard not to worry. I am sure that your Mum derives a lot of comfort from having such a strong and supportive family around her. 
    You are right though, we all just take each day and make the most of it. We are in it together and you have come to the right place for some mutual support and chat. Rob X 
  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭
    Hey thanks for welcome! yea I was diagnosed in September having found a cyst in breast. I was told it was just a cyst by ultrasound guy.....but when he drained it, it filled back up again and he discovered the tumour behind it. Both were removed on 23rd Sept  along with sentinel node biopsy. I was given the all clear but they have recommended the belt and braces approach....so chemo starts the week after next! I     am allowed to go on a pre-booked holiday first and might not come back!!    So far recovery from surgery has been ok apart from pins and needles tingliness which drove me mad!! I can tell the nurse thinks this is a minor issue compared with whats to come!! At least,  I think that in the way she responds to my grumbling! The wig lady has given me an appointment.....but its not hair loss that concerns me as much as pumping nasty chemicals in! I used to have depression and successfully weaned myself off any medications so am none to happy to introduce a cocktail like!!  Family and friends have been fantastic but I am putting on weight with kind gestures, cream buns, chocolate, and I am not saying no because I am not nauseous at the moment!! Reactions form some people have been interesting......my sis in law keeps sending me texts with a million emojis at the end of every message! So for now amy tips re; chemo.....should I take any specific supplement vitamins etc.....I have heard that auricular acupressure on the ear may help with sickness.  Happy to poke my ear rather then more drugs to counteract the drugs.....Anyway, I am both happy and unhappy to be here!  Lots of you have valiantly got through...so i welcome any advice!     Sasha
    Hi @sasha_ruby1219 ;


    I hope you have had/are having a fabulous holiday away from all this rain! From your post I am thinking that you start chemo this week? I hope it goes smoothly without any hitches. I had to have a picc line fitted as my veins weren't good enough to cope with chemo. The actual process for me was very simple although I do remember feeling extremely nervous each time because of all the possible side effects that might occur! Turns out they didn't happen. You may not suffer from all of them, everyone is different. My biggest fear was being sick, I just don't do it (hahaha). I know you don't want to take any more drugs than necessary, but I did find they actually worked. I wasn't sick once. I did have some other side effects, serious bone pain (I thought sciatica had returned), constipation/diarrhoea, sore gums and mouth. Oncologist gave me prescription for these things. If you find you have any side effects speak to the cancer team, they will help you.
    I was told not to take any supplements during chemo as they could mess with the drugs working, I would clarify that with your oncologist. One of the ways I coped with chemo was to imagine it was like a nuclear heat-seeking missile searching out what it needed to destroy. I would watch the meds drain out of the bags into my arm and send it on its way. Laughter is good. I usually went with my husband, once, both my daughters came with us too. We would laugh about stuff. At first I was a bit worried about it as some patients were clearly suffering, however the chemo nurses told us not to stop.  I do hope that in the midst of your treatment you find joy and laughter in unexpected places. These are just a few things, if you experience others just give us a shout. Lou x
  • puppy3puppy3 Posts: 15
    Hi @sasha_ruby1219 how was your holiday? I have found lots of helpful advice on here and hope you find the same
  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭
    Hi I am new to site I have just been diagnosed with lung cancer after several months of seeing my doctor. I will be starting chemotherapy next week any advice or help will be very welcome Thank you.  Maggie 
    Hi @Maggie1980  

    Welcome to the community, I hope you will find its a friendly supportive group. How is chemo going? Are you in week 2 now? To start with, the main advice I could say is take one day at a time. Not just a quaint saying, but very true. Going through chemo one day at a time, crossing each one off as you go. If it is possible, take it easy whenever you can and let your oncology team know if and when you experience any side-effects, they will be able to help and advise you. Let us know how you are doing. x
  • Maggie1980Maggie1980 Posts: 6
    Thank you for replying at moment I am very emotional side effects seem to differ each day. Wonder if others feel so lonely I have my close family around but my friends seem to have deserted me. Will be at mount vernon next week to have pick line put in then 2nd round of chemo. Hope you are doing ok x
  • RobertARobertA Posts: 569 ✭✭✭✭
    Hi @Maggie1980  

    I think we have all experienced the loneliness of a cancer diagnosis.

    When I was first diagnosed, I was also surprised at how difficult my friends found it to talk to me.  I decided to speak openly about my treatments and their side effects and after a while it got easier for them.  You are lucky to have such good support from your family. Some of mine were not able to understand how tiring and wearing cancer treatments can be both physically and emotionally and expected me to be the same old Rob I had always been. Not always easy! 

    I think it is natural that people who have not experienced cancer do not 'get it' in the same way that we do and that is one reason why this community is so important. When anyone is tired, scared, lonely, despondent, in pain, or just having a bad day, they can just post and we will understand and support them because we have been there and know how it feels.  Added to that, there will always be someone who has experienced your specific treatment and can provide useful advice. 

    Keep eps in touch and let us know how you are getting on with your treatments
    Rob X 







  • Maggie1980Maggie1980 Posts: 6
    Rob.  Thank you for replying it’s always helpful to know it is normal to feel they way I do. Maggie
  • Hi to everyone and thanks for encouragement! I had a great holiday thanks....my daughter came for part of it and it was sunny and warm. i was allowed to swim...which was great cos i love to feel  salt water and feel the healing! Yesterday was good. First thing that happened was bloods then the wig fitting which was fun and really good, i got something that looks pretty close! ! I also bought two purple bandanas on holiday which I am pleased with, and dangly earrings as someone advised.  Complacently I sailed into today's proceedings.....not so good! The PICC line insertion .....firstly the chat beforehand....my husband fainted!....... yep he sure did!   Never done it  before...a combination of the chat with the heat and ears popping from the flight....he had to have a bed! They then took me in and it took them 5 goes to get the line in due to the fact that I was just not relaxing because I was worried about him!!  I then also got dizzy on rising from the bed....we both had two cups of tea and chocolate and then I drove hubby home!!! He slept for first part of afternoon and I slept for second half as when I got in I decided to make him potato soup!!  My son is just home and in kinks laughing at the thought of his Dad conking out!  Great start!  Chemo session tomorrow morning....I feel bruised and battered and for sure not in the mood for the chemo. That said, your advice sheet on chemo and how to get through it is very helpful!  Maggie, we will be ok! People were coming round at time of surgery and seem to have disappeared..... my guess is they don't want to join me in the aftereffects of chemo...most are probably worried it may happen to them, poor souls!  When I got home with my truly supportive partner and he fell into bed, I realised how lonely it can be, but I put on some music and made my soup.....and settled!   Hope for tomorrow....might not be a great day either.....but when it's done there is only 5 to go for me.....I will send my husband out to the garden......he is off work but there are chickens outside for him to talk to!   Best keep him in the fresh air!!  
  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭
    Hi Maggie, 

    It is not unusual to feel emotional, it is still very early days for you, and it is a massive shock to the system. So glad your family are supportive, sorry to hear about your friends. Often they don't really know how to respond for fear of saying the wrong thing and so don't say anything at all. I remember when I had to tell people, I was very positive, so giving them the news but at the same time saying we got this, concern that I was in denial! No!!! Just not prepared to let cancer rule the roost! I do hope they rally round for you. You know you can always talk to any of us here anytime. I am sure there will always be someone online.

    I hope the picc line goes in ok, I have heard others say it was a piece of cake having it inserted, unfortunately I was like @sasha_ruby1219 , it was how shall I say...less than simple! But that doesn't mean it will be that way for you. It will make chemo so much easier. Hope you have a peaceful evening. x
  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭
    @sasha_ruby1219 ;

    Hi Sasha, 

    Oh my word! I can't believe what a day you have had, although I can picture it. I know it is awful but I am sure you will all laugh about it one day. I understand about the picc line. Mine was exceedingly difficult, the bruising lasted for weeks. But it's in now, and will make chemo much easier for you. So much better than having to search for a vein. And you drove home!?! Tomorrow, take a snack and drinks with you, book, music or something to help pass the time. You will no doubt be sent home with a bag full of drugs to take. I am so glad you had such a fabulous holiday, memories to keep to help you through this. Keep in touch with how you are doing when you can. Will be thinking of you tomorrow. Have a peaceful evening. Lou x 
  • Maggie1980Maggie1980 Posts: 6
    I think we tend to make up excuses for our so called friends even my sister seems to have a mental block texting me about her ailments and me being stupid enough to sympathise with her when really want to tell her to do one. Sorry for the rant but so disappointed in them. Maggie
  • Hi There.......first week over and it was tough enough! I was very nauseous the evening of the session and into the next morning. I do feel strange, eyelids flickering at night, head heavy and the  beginnings of sore throat!  I  have kept to myself and walked a lot but need to go out and meet a friend soon!  Eating a bit better now......when does hair begin to thin?My nails feel a bit dry and mouth etc!  family have been supportive.  Maggie do keep your spirits up re: friends.....people do respond differently. A lot of people were about when I was having surgery but seem to have disappeared, maybe because of the need for infection control! I am not concentrating too well......just seem to be sorting socks!!    Sasha 
  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭
    @sasha_ruby1219 ;

    Hi Sasha, 

    Good to hear from you. 
    I hope the nausea has settled down. Are you taking any anti-sickness meds? 
    Really good you have been able to walk a lot, that will help. With your sore throat, mention it to your oncologist or nurse next time. They should be able to give you some mouthwash, I was given some Difflam to take, which did help.
    Not surprised about the concentration, 'chemo brain' affected me and probably many others. I noticed I had difficulty reading, which I love, but just couldn't for a long time. You may find your memory and ability to put into words what you want to say is affected also. 
    What chemo are you on? I don't know if it is different with each drug, I was on FEC-T, and was told my hair would start to fall out in two weeks. Sure enough, day 14, clumps of it began to come out, either when I brushed it, or on the pillow in the morning etc. My head hurt as well while this was happening. 
    What is your week 2 regime? Injections? 

    Enjoy meeting with your friend, and at least all the socks will be paired! :) 

    Lou x
  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭
    @Maggie1980 ;

    Hi Maggie, 

    Thinking of you this week when you have the picc line inserted and round two of chemo, hope it all goes smoothly for you.


    Lou x
  • Next session is injections into PICC.....getting that dressed today. i have been given anti-sickness meds and they help but I am only nibbling and diced carrots cause me to squirm! I am also not necessarily getting those socks paired! Yes its FEC-T so i expect the hair will be same time!  Wondering what to wash i with in the meantime as it is dryish and course........using conditioner but would love something smooth to rub in .....serum or something? Wont have to worry for too long I suppose....hope it doesn't hurt too much!  Someone has called by and left flowers at the door......how lovely but wish they had knocked!!  Forgive me for making this forum my lifeline at the moment! My brain is scrambled!  They are offering one to one therapies in the local monastry (McMillan) but there is a long waiting list. Did anyone have their counselling?  family are great but someone who knows the score would be great! That's why I'm here!    Sasha! 
  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭
    Oh that is lovely you have flowers. I know, not knocking can be so frustrating, especially if you are on your own most of the day. Having a real chat would be good. Are you able to eat soup or toast? Try and keep your fluids up, little sips.
    You may not have pain with your hair like me, everyone is different. Perhaps Body Shop might have something to help with the dryness. But yes, it won't be long. 
    I didn't use Macmillan myself, but @RobertA mentioned he has in the past. He may have more info. (Hope you don't mind me saying Rob.)

    That's why this forum is here Sasha, to help each other, provide a listening ear, support, useful info if and when it's wanted. Anytime.

    Lou x
  • RobertARobertA Posts: 569 ✭✭✭✭
    Hi @sasha_ruby1219 and @Sunshinedaff

    I have not commented on your situation before as I have not experienced chemo, but my heart goes out to you Sasha. 

    I have had counselling through my local MacMillans. We are very fortunate here in Jersey as they are very active and supportive.
    We also have regular get togethers for people with life limiting illnesses at Jersey Hospice and they have special sessions for different situations. Perhaps you might try the local hospice! 

    How frustrating that you have a long waiting list for something you need now. I have been fortunate inasmuch MacMillans have provided me with a wonderful counsellor who gives her services for free. I still see her for an hour once a month - it is so liberating to be able to express my deepest, darkest thoughts in private, without being judged or laughed at.  She introduced me to mindfulness and meditation. Not for everyone ai suppose, but I am a completely different person to the mental wreck I was six months ago. 

    Cheers
    Rob X 

    PS  Don't mind at all Lou. Anything we can do to help one another is great. 
  • LesleyLesley Posts: 138 ✭✭✭
    Hi I'm Lesley , I have been diagnosed with rectal cancer, starting chemo next week,was getting really worried had to wait several weeks before they could fit me in! Looking forward to advice from other members ,quite scared about it all!🙁
  • LouiseJLouiseJ Posts: 319 mod
    edited December 2018
    Hi @Lesley

    Firstly may I welcome you to the community, I am sorry to hear of your recent diagnosis. I hope that they have found it in early stages and that your treatment will be successful. It is very scary to begin with, although I think the waiting to find out, whether it has spread and the fear associated with all of that is in some ways the worst part. Try not to let the fear overwhelm you, the good news is it's been found out. I am sure, and hope, your Dr's and nursing team will keep you informed all the way through.  I know they have different chemo drugs for different cancers, some side-effects may be similar, others different. If you have any thoughts, questions, feel free to say, the main thing is though, always take any questions to your medical team too. They are the professionals. For myself, I can only speak about my experience, which may or may not be helpful. 

    The people here are friendly, helpful and supportive. We are all here for each other.

    x




  • LesleyLesley Posts: 138 ✭✭✭
    Thank you so much for the support! I'm so pleased I found this site !xx
  • RobertARobertA Posts: 569 ✭✭✭✭
    Hi @lesley and welcome to you. 

    Great that you have found this site. Of course you are anxious, a cancer diagnosis is pretty scary, but you get used to it and modern treatments are usually very effective. 

    You have a lot of friends here and we look forward to hearing how you get on. 

    Rob X 
  • Hi Lesley, I have just joined here with chemo starting after lumpectomy. My nodes are clear but they are doing it anyway...as preventative!  Not a great feeling to have healthy cells being killed off........I have completed one session and am suddenly filled with admiration for all those who have been through it!  It's not easy......but you deal with it as anything.....a day or sometimes an hour at a time!  I am eating better this last few days and got out to a gift shop with a friend without feeling vulnerable so that's a better day for me!  Let us know how you are doing!  Sasha x

  • LesleyLesley Posts: 138 ✭✭✭
    Hi Rob and Sasha thanks so much for your messages ,went out with husband last night for my last glasses of red wine for a while😔 feeling it this morning! It certainly doesn't agree with me anymore! Sigh! Never mind , got to think positive! And get myself prepared for next week! Xx
  • BettybooBettyboo Posts: 5
    Hi everyone,

    I’m Heather. I’m 33 and got diagnosed for the 2nd time a few weeks ago. My first diagnosis was in August 2010 when I had ER+ breast cancer. I had 4 rounds of chemotherapy, a lumpectomy and radiotherapy. In 2012 I found out I carried the BRCA1 gene so I’m 2013 I had a double mastectomy and DIEP Reconstruction. A week before my 8 years clear I got diagnosed again with a very faint ER+ tumour in the reconstruction flap. I have just finished fertility preservation and will be starting chemo in the new year.

    i am hoping use this forum to get advice, rant and generally help anyone I can.

    xxx
  • RobertARobertA Posts: 569 ✭✭✭✭
    @Bettyboo
    Hi Heather

     It must have been soo disappointing to get this new diagnosis after everything you have been through already.

    How lovely to hear that you are keen to help other people who can benefit from your own experiences. It will be really appreciated. 

    This is a friendly group and you are very welcome indeed.

    Rob X 




  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭
    @Bettyboo ;

    Hi Heather, 

    It must have been a huge shock to you to get another diagnosis, on top of what you have already been through. We are all here to help and support each other where we are able, to inform, rant, laugh and cry. A very warm welcome to you, looking forward to chatting. 

    Lou x
  • BettybooBettyboo Posts: 5
    @RobertA and @Sunshinedaff yeah it was a bit of a shock but I think between finding the lump and getting it confirmed I realised it had come back. When you know you know I guess. When I was first diagnosed I was only 24 and there wasn’t many forums or social media groups where I could chat and I got in a dark place but over the 8 years I’ve built up a really good support group of surviours and now I’m in such a better position to smash it once again. I struggle with getting sympathy and I do feel like as much as everyone tries to help I sometimes find it better to rant to people I don’t know. I’ve always been as open and honest as I could after diagnosis so I’m hoping I can stay like it through this one too. I started a Facebook blog to just help awareness and so far two people who are read it have found a lump and have been referred to their local breast units so hoping it’s all good news for them x
  • SunshinedaffSunshinedaff Posts: 760 ✭✭✭✭
    @Bettyboo ;

    Heather, how fantastic that your blog has encouraged others to check themselves and have the courage to see Drs and get referrals. The quicker things get found the better. You sound as if you have an inner strength that has helped you through such difficult times. I have a feeling you are an inspiration to all those around you.
    I agree with you, sometimes it is easier to rant, and talk with people not close to you. 

    Lou x
  • RobertARobertA Posts: 569 ✭✭✭✭
    @Bettyboo ;
    You are amazing. How lovely to know that you are doing so much to raise awareness amongst other ladies, even as you are facing a new big challenge yourself. 

    I am always trying to find ways of persuading my mature men friends to get a PSA test which can indicate the presence of prostate cancer. It is very difficult as guys seem to prefer to ignore symptoms until it is too late. Frustrating as it is so treatable if caught early. 

    Have a rant any time you like. We are listening. 

    Rob x 
  • MelindaMelinda Posts: 3
    Hi! I am new to this site. I have Peritoneal mesothelioma. It is a cancer caused by asbestos. You may have seen the commercials on TV. It is in my stomach, so, must have ingested it somehow. I have had 9 chemo treatments, as well as surgery and the HIPEC, which is hot chemo directly in your stomach after surgery, for 5 days. I have chemo every three weeks. I was wondering if anyone else has this awful stuff. 

    We have 2 dacshunds and we like to camp.
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