Hello and welcome!

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Comments

  • VronVron Posts: 15
    Hi Val
    You sound very positive so that's a good start  I have a different cancer but I did have a very sore mouth after my first Chemo, I was prescribed an antibiotic for Thrush and followed up with a mouth wash which wasn't very effective but now have Difflam Spray, Benzydamine Hydrochloride which is much better, ask the Dr to prescribe something when you see them.
    Also I was told not to have live yogurt while on Chemo, maybe this is something you could ask about. 
    Veronica xx



  • achybreaky71achybreaky71 Posts: 8
    Hello all especially those with bowel cancer. I have had up to now 26 chemos 12 of which wrecked my nervous system and made me very poorly. Then my oncologist found after my first CT scan I was CLEAR! It came back very quickly 6 wks to be precise, and now I am told this is aggressive BUT can be kept at bay with different chemo and breaks of about 5 wks. I have had terrible sore mouth with ulcers, the first chemo left me with neuropathy, steroids give me a few days of energy then I sleep and sleep! I manage small walks and do tai chi but my problem is Bertha (ileostomy) I am sure I have mentioned all this before, chemo and being blonde make me dopey!! Bertha gets sore if I eat something that’s not good, I love garlic etc and refuse to let her rule my life but unfortunately she is capable of stopping me walking the dog and tai chi, so it’s a question of being dealt a double whammy. I realise I owe my life to Bertha but there are days when I simply feel so utterly fed up.today is one of those, I have slept all day, and Bertha stings, I forgot to say I have a hernia underneath her too. I have a wonderful family, a husband who also is so good to me, he is nearly 80 ...I have a lot to be grateful for, so having put all this down now, I am now positive achybreaky71!, this forum is amazing and good luck to you all and let us try and be positive.....?
  • NessNess Posts: 2
    Hi everyone...
    I was diagnosed with breast cancer in November 2017, aged 43, and had a mastectomy & lymph node clearance, as well as chemo and Radiotherapy. Finished treatment mid-September 2018, and went back to work in October. Am finding that I still seem to have a bit of “chemo brain” and struggle to focus fully on my work/am easily distracted, plus I’m incredibly tired most of the time. I wonder if, in my eagerness to get life back to some sort of normality, maybe I have expected too much of myself too soon...
    Am also wondering if anyone else on Tamoxifen suffers with the same awful joint pain that I’m experiencing? Or is it just me lol. 
    I’m also struggling a bit with the constant fear of it coming back, and don’t want to burden my loved ones with my worries. I suppose it’s still early days. 
    It’s nice to be part of a community that understands how I’m feeling 😊
  • SunshinedaffSunshinedaff Posts: 741 ✭✭✭✭
    Good morning @Ness


    A very warm welcome to you, I hope you will soon get to know others here also, I'm glad you feel able to share with us. As you say, even if the cancer is different, we do understand much of what each other has gone through.


    I am amazed you have returned to work so soon after finishing treatment, I was unable to do that as I had a lot of 'after' side-effects from treatment affecting my mobility. Not good for working in a school!

    I am not surprised you are finding it difficult. I too had breast cancer, treated first with chemo, then a mastectomy and lymph node clearance followed by radiotherapy, with Tamoxifen to take afterwards. I was diagnosed in Sept 2015. So we have followed a similar path, however you are younger than I am.
    The after-effects from all the treatment, goes on for a lot longer than we think it does. Yes, chemo brain continues for a long time, as does extreme tiredness and fatigue. The bone and joint pain, which for me began during chemo, but got worse once I started Tamoxifen, is horrendous.  It is not just you! 
     For me, it was probably the worst thing to suffer with, as it left me feeling like an old, shuffling woman who was unable to walk very far or stand for any length of time, or sit. Getting up is very difficult, I have to brace myself for it.
    Having been through cancer,  and got free from it, to feel like that was not good.

    I would encourage you to let your oncologist know about the bone pain etc. Mine were brilliant, arranging Dexa scans to check my bone density, x-rays, MRI's, physio, referral to Orthopaedics to see if anything could help me. 
    At the same time though, during chemo I developed plantar fascititis in both my feet, can you imagine!! Then last Easter, after having a MRI and CT scan, they found I had fractures in both feet...hahahahahaha. =) =)  =) !

    I have found that swimming is helping me a lot. I am unable to do any weight-bearing exercise, so being in the water is the best thing for me. Slowly, over the months, since towards the end of last year, I am starting to see an improvement in my mobility. It is very slow. 

    But also, I had to change meds to Letrozole, as I reacted to Tamoxifen, that was just over a year ago.

    How are you coping with the hot flushes? Are you having any?

    Are you working full-time? That has got to be so hard. I don't know how you are doing it.

    The fears of it returning are also very understandable. Don't be afraid to speak to your breast care nurses if you do start to notice anything.  Every ache or pain, especially in the other side for me was scary. I remember phoning the breast care nurses up to tell them, they were so good. Because the pain felt the same as I had prior to diagnosis, I was scared it had started again. They arranged for me to have an ultrasound, to check, but it was fine. I was told, they would rather I call, and they can catch anything early, instead of leaving it, and it becoming too late. 


    It is still very early days for you, to be honest, it took me a long time to process what I and my family had been through. Whilst you are in the midst of it all, it is crazy, with so much going on. 


    Be kind to yourself, you may not return to the person you were before cancer, it may be different. 
    The old 'Normal' has probably packed up and moved. Now we have to look forward and find a new 'normal', but that may take a bit of time. 

    I look forward to chatting with you again, if you would like to. 

    Lou x








  • SunshinedaffSunshinedaff Posts: 741 ✭✭✭✭
    Hi @Ness ;

    I saw you mentioned you were suffering from lymphoedema following your treatment.

    I also have lymphoedema, I didn't realise it to begin with, it was only when I mentioned to my physio, that my arm and hand was very swollen, and very painful, that she looked at it, and immediately suggested it might be lymphoedema. 

    I then went and spoke to the nurses, who referred me to the lymphoedema clinic.

    Have you mentioned it to your nurses? Hopefully there will be a clinic you can go to.

    It has really helped me, I was given a set of exercises (massage) to do to encourage the dispersal of fluid, and I was fitted for compression sleeves and gloves which I wear. At first I wore them all the time, but as things have improved I wear them occasionally. 
    I was also prescribed strong nerve pain meds as the usual 'go to's ' were ineffective.
    I have noticed it gets worse after a prolonged use, ie, gardening, sewing, baking etc. Plus during the summer months it is a lot worse. I went to the clinic frequently to begin with, they check how things are by measuring both arms and doing some calculations. Since my last appointment I only need to go yearly.

    Again, exercise, swimming for me, really helps as well.

    I hope you are able to get some relief from it soon. 

    There is another thread relating to Lymphoedema that was posted in November, I've put a link to it below.

    https://community.livebetterwith.com/cancer/discussion/99/breast-cancer-and-lymphoedema#latest

    Lou x


  • LouiseJLouiseJ Posts: 305 mod
    Hello all especially those with bowel cancer. I have had up to now 26 chemos 12 of which wrecked my nervous system and made me very poorly. Then my oncologist found after my first CT scan I was CLEAR! It came back very quickly 6 wks to be precise, and now I am told this is aggressive BUT can be kept at bay with different chemo and breaks of about 5 wks. I have had terrible sore mouth with ulcers, the first chemo left me with neuropathy, steroids give me a few days of energy then I sleep and sleep! I manage small walks and do tai chi but my problem is Bertha (ileostomy) I am sure I have mentioned all this before, chemo and being blonde make me dopey!! Bertha gets sore if I eat something that’s not good, I love garlic etc and refuse to let her rule my life but unfortunately she is capable of stopping me walking the dog and tai chi, so it’s a question of being dealt a double whammy. I realise I owe my life to Bertha but there are days when I simply feel so utterly fed up.today is one of those, I have slept all day, and Bertha stings, I forgot to say I have a hernia underneath her too. I have a wonderful family, a husband who also is so good to me, he is nearly 80 ...I have a lot to be grateful for, so having put all this down now, I am now positive achybreaky71!, this forum is amazing and good luck to you all and let us try and be positive.....?
    Hi @achybreaky71

    Just wondering how you are doing, and how you are feeling?
    I think you are amazing, having been through so much treatment, and still on-going, adjusting to life with Bertha. Some 'fed-up' days are not surprising and not to feel bad over having. Underneath it all, you sound like a very positive person, determined to not allow this disease to define you or curtail your life anymore than is necessary. I applaud you.
    I hope this week has been better for you, may you have a peaceful weekend.

    Lou x
  • achybreaky71achybreaky71 Posts: 8
    Hello Lou,
    How very kind of you to check on me, it’s been a tired week for me, and I have rested and slept, my body told me forget gong out it’s snowy and cold! I think I have just been lazy, but Bertha has been a bit of a bitch and it’s not easy getting advice, apparantly I am getting a call from the stoma team from my local hospital on Tuesday....a call? Really?    I would have liked an appt and someone look at it, but I have read what  others have done in similar circumstances and it’s starting to ease up.I shall be in chemo on Tuesday anyway so they say if they can’t get me they will try Weds, I am not staying at home, ..they will have to,try my mobile and hope I have a signal,  which is rare  in my area. I do have an amazing back, up medical team but the stoma side are just  too short staffed, and they seem to cover about 4 hospitals each, it just always seems once you have the op...it’s a case of “ good luck and give us a ring if you need help” you ring and it’s a message service picks up 2 days later by which time you are terrified..... I am ok now and can cope with many problems, I think in my area  we seem to be lacking....I joined Osteomates and get a magazine every so many months with lots of tips and also they have meetings. 
    I miss a lot of meetings as chemo gets in the way! I am back to the stage where I am worried about picking up infections, this time of year is bad. You only have to walk into the hospital entrance and dozens are coughing etc, last winter I spent weeks in hosp with infections, I now have a case ready packed with all my night clothes and Bertha stuff!, my husband has bought me a teddy to keep me company I have called him Bertie, my grandchildren would have willingly lent me one but my husband beat them to it! Are we crazy? Possibly but who cares? 
    One has to just forget what others think when you get this vile disease, and do what you want whenever and that is what I do now. I have made some lovely friends through this journey in the chemo units etc and one thing I have learnt positivety and accept your life has changed and move on, it took me a long time to realise I wasn’t going to beat up a golf course again, I wasn’t going to have as many long walks on holidays and ride my daughters horse again, I hadn’t been on it for a few yrs anyway brittle bones and all that....but I was going to LIVE
    for a lot longer! Take care of yourself I hope you are as well as you can be and chat soon. 😃🤒


  • nessienessie Posts: 3
    Hi i have stage 2a ovarian cancer. Feeling very lucky to have caught it early. Chemo is going well so far - i was so frightened before i started. If no 3 out of 6  on Thursday goes OK i am promising to stop worrying! I make sculptures of women and women and children so very lucky being ill I can do it when it suits me and have been keeping that going ok. my husband is very sweet and supportive with me when i feel less good or am worried. And I have round people to be great. Tho they do all expect me to be in a dreadful state and are hard to convince that I am not finding it nearly as hard as I had feared. I like to go about not covering my bald head tho even I get a shock still each time I see me - i do think I look a bit like Gollum... But I like to be open about all things and the baldness feels honest. I am looking forward to May when I should be done with treatment and put this behind me. Or am I kidding myself? 
  • RobertARobertA Posts: 548 ✭✭✭✭
    Good afternoon ladies. 
    I love reading your posts. You are so positive and courageous and I am full of admiration for you all. 
    It is so good that we are all able to come together and help each other with advice and understanding or just to chat.

    Rob X 
  • RobertARobertA Posts: 548 ✭✭✭✭
    @Ness
    Good afternoon Ness

    Goodness, you did go back to work quickly. I am not at all surprised that you get so tired and I can only echo what @sunshinedaff Lou has said so eloquently, particularly as she has experienced so much of what you have endured.  

    It it is inevitable that you will be worried that the cancer may return and I think that is a perfectly normal reaction - we are all the same, particularly in the early days. 
    A cancer diagnosis is different to any other type of illness and most of us are likely to be dealing with lingering physical and/or emotional effects and in some ways we have changed. 
    Friends and family are usually very supportive, but if they have not experienced cancer, they may not be able to step into your shoes and fully understand how you feel and as you say, we do not want to burden them with our fears and anxieties anyway. 
    I sailed through my treatment, but after the worst was over and I should have been getting more positive, I hit the buffers and fell into depression. I was lucky because the wonderful MacMillans took me in hand and provided me with a counsellor who was able to help me get myself together again. I am still living with cancer, but I am happy and enjoying life again.   Of course, you may not need counselling but if you have a MacMillans near you, it is worth popping in and having a chat. They are so supportive and understanding. 

    Rob x 

  • SunshinedaffSunshinedaff Posts: 741 ✭✭✭✭
    @nessie ;

    Great photo, it is really good you have been able to carry on with some work whilst going through all of this. 

    Gollum, dear Gollum!! Yes, very familiar with that, you have to laugh about it, don't you. 

    It is good to look forward to when you are through this and out the other side. We had already planned a holiday before diagnosis, but we stuck with it, refusing to change plans. I just expected to be done and dusted with it, on the way to recovery. 
    Halfway through your chemo, great stuff, I hope it continues to work well for you.

    Speak to you again, 

    Lou x
  • RobertARobertA Posts: 548 ✭✭✭✭
    edited January 27
    Hi @nessie ;

    I am so pleased the cancer was found early and that you are coping so well with the chemo. That is a great start. Not sure I would call it lucky that you were diagnosed with cancer, but I admire your positive attitude. I think it is great that you are prepared to show your baldness and I love your photograph. Do be careful in this cold weather though as you have enough going on without catching the flu as well. 

    I do like your sculptures. I am just hopeless at making things, though I do play keyboards and find it very therapeutic. 

    All the best for Thursday.

    Rob X 



  • SunshinedaffSunshinedaff Posts: 741 ✭✭✭✭
    Hello Lou,
    How very kind of you to check on me, it’s been a tired week for me, and I have rested and slept, my body told me forget gong out it’s snowy and cold! I think I have just been lazy, but Bertha has been a bit of a bitch and it’s not easy getting advice, apparantly I am getting a call from the stoma team from my local hospital on Tuesday....a call? Really?    I would have liked an appt and someone look at it, but I have read what  others have done in similar circumstances and it’s starting to ease up.I shall be in chemo on Tuesday anyway so they say if they can’t get me they will try Weds, I am not staying at home, ..they will have to,try my mobile and hope I have a signal,  which is rare  in my area. I do have an amazing back, up medical team but the stoma side are just  too short staffed, and they seem to cover about 4 hospitals each, it just always seems once you have the op...it’s a case of “ good luck and give us a ring if you need help” you ring and it’s a message service picks up 2 days later by which time you are terrified..... I am ok now and can cope with many problems, I think in my area  we seem to be lacking....I joined Osteomates and get a magazine every so many months with lots of tips and also they have meetings. 
    I miss a lot of meetings as chemo gets in the way! I am back to the stage where I am worried about picking up infections, this time of year is bad. You only have to walk into the hospital entrance and dozens are coughing etc, last winter I spent weeks in hosp with infections, I now have a case ready packed with all my night clothes and Bertha stuff!, my husband has bought me a teddy to keep me company I have called him Bertie, my grandchildren would have willingly lent me one but my husband beat them to it! Are we crazy? Possibly but who cares? 
    One has to just forget what others think when you get this vile disease, and do what you want whenever and that is what I do now. I have made some lovely friends through this journey in the chemo units etc and one thing I have learnt positivety and accept your life has changed and move on, it took me a long time to realise I wasn’t going to beat up a golf course again, I wasn’t going to have as many long walks on holidays and ride my daughters horse again, I hadn’t been on it for a few yrs anyway brittle bones and all that....but I was going to LIVE
    for a lot longer! Take care of yourself I hope you are as well as you can be and chat soon. 😃🤒


    Hi @achybreaky71 ;

    I think it is very wise to listen to your body and get as much rest as possible, especially as you are going through chemo, and Bertha is playing up.
    Are your stoma nurses at the same hospital as your chemo team? I do hope they contact you on Tuesday, I can appreciate the frustration at not being able to see someone sooner when you need to.
    Doing what you want, what you need to do, when you can is the way to go, definitely. You are right, life has changed, we can't go back, only move forwards as best we can, appreciating, as you clearly do the life we have. 
    It is a silver lining isn't it meeting new friends, I think here on the forum even though it has only been up a short while, I feel like I have made new friends already.

    Going to hospital at this time of year is tricky, I didn't have one of those mask things, but would cover my face with my scarf to try and keep away from other people's stuff. I do hope you manage to steer clear of all of that.

     I hope your next chemo goes smoothly, and also that Bertha settles down soon.

    Speak again soon, 

    Lou x



  • LesleyLesley Posts: 138 ✭✭✭
    Oh Nessie ! Love your sculptures! That must be so therapeutic  ! Just to put all your thoughts and feelings into something so tactile and lovely! What I like about them they are very honest and show real women and true form ! Xx
  • BevSBevS Posts: 5

    Hi, I’m Bev and was diagnosed with breast cancer in June 2018. I underwent 5 months of chemo, I was hospitalised twice and had to have a dose reduction to 75%; then a mastectomy and lymph node clearance.

    My tumour had grown to 15cm in the 6 months from diagnosis to surgery. It was then that I found out the chemo hadn’t worked and so now I have started on another type of chemo. I have had one cycle and so far so good.

    My advice is to stick with it, tell your team everything - 9 times out of 10 they will have a suggestion.

    I see an acupuncturist to help with my immune system and it is working a treat. Give anything a go I say.

  • SunshinedaffSunshinedaff Posts: 741 ✭✭✭✭

    Hi @BevS ,

    Lovely to meet you!

    I am glad it is 'so far, so good' with your second type of chemo. It must have been a shock to find out after surgery the first chemo hadn't worked for you. How are you in recovering from your surgery? I hope that is going ok.

    It sounds like you have a good team around you, which is good to hear.

    That's great you are finding the acupuncture is helping you too.

    I too had breast cancer, was diagnosed in Sept 2015, had chemo, mastectomy and lymph nodes cleared, then radiotherapy for five weeks. My treatment was successful, although the after-effects of treatment have been tricky to overcome. But I don't have cancer, that is the main thing. I am now on Letrozole, having started on Tamoxifen but had complications with that.

    I wish you continued success in your treatment, hang in there, it might get a bit rocky, but there is light at the end of the tunnel.

    Everyone on here is very friendly, please come and chat often, we all try and support one another.

    Hope you have a restful weekend,

    Lou x

  • MarieMarie Posts: 5

    Hi

    My name is Marie Madeleine and over the last year I have had 2 operations for breast cancer, chemotherapy, radiotherapy and an emergency appendectomy. So it's been a he'll of a year. However my 1 year CT and Mamogram showed I am all clear.

    I have been writing a blog to voice my journey but it would be nice to talk with others also going through this. Xxxx


  • BevSBevS Posts: 5


    Sunshinedaff

    Posts: 313 ✭✭✭

    March 8

    Hi @BevS , 

    Lovely to meet you! 

    I am glad it is 'so far, so good' with your second type of chemo. It must have been a shock to find out after surgery the first chemo hadn't worked for you. How are you in recovering from your surgery? I hope that is going ok. 

    It sounds like you have a good team around you, which is good to hear.

    That's great you are finding the acupuncture is helping you too. 

    I too had breast cancer, was diagnosed in Sept 2015, had chemo, mastectomy and lymph nodes cleared, then radiotherapy for five weeks. My treatment was successful, although the after-effects of treatment have been tricky to overcome. But I don't have cancer, that is the main thing. I am now on Letrozole, having started on Tamoxifen but had complications with that.

    I wish you continued success in your treatment, hang in there, it might get a bit rocky, but there is light at the end of the tunnel. 

    Everyone on here is very friendly, please come and chat often, we all try and support one another.

    Hope you have a restful weekend, 

    Lou


    thank you so much for your really nice response. I am really happy for you being clear.

    I have recovered really well from surgery, I am still having some fluid drained but it is easing up now 😁

    i just have to maintain a positive attitude so this chemo doesn’t defeat me. I’m also very grateful to have avoided radiotherapy so far, the effects of that sound terrible.

    BevS

  • LauraLaura Posts: 33

    Hi Lesley, I also have rectal cancer and have undergone chemo and radiotherapy. It was not as bad as I expected and still felt well enough to carry on almost as normal, so please don't panic too much. Although every person reacts differently. I was pleasantly surprised. The worst part was at the end and dealing with radiation burns, but even these only last a week or so. Please don't be too scared, you'll find the staff are brilliant. Good luck with your treatment xx

  • PoppypipPoppypip Posts: 2

    Good morning everyone, I'm new on this site as of about ten minutes ago, I've already responded to a lady with rheumatoid arthritis and cancer like I have.

    Everyone seems to be so welcoming and helpful , I'm an absolute wuss when it comes to my care plan, I see my oncologist he tells me what's next and I turn up, so far I've had 6 chemotherapy sessions which were great no side effects but it transpired it didn't work,then I had 33 radiotherapy sessions and my body didn't cope very well I have burn holes in my bottom as the cancer is anal, and a very painful fecal fistula .

    I'm very interested in the mental health aspect of this condition ie anxiety,low mood depression even paranoia and as to why I dont want to hear the ins and outs off my oncologist, as everyone else really knows what is happening to them , my husband thinks it was the day I was told by a surgeon about my diagnosis he was so abrupt and painted such a dark picture . Thank you for listening

  • SunshinedaffSunshinedaff Posts: 741 ✭✭✭✭

    Hi @Poppypip

    Welcome to our lovely community, lovely to 'meet' you!

    Brilliant that you have responded to other posts too, I think everyone will find someone in the same or similar position, which is great because it helps to reduce that feeling of 'being the only one' with symptoms, side-effects etc. Even if the cancer is different, the impact of cancer on our lives is all too similar. This is a good place to find support, encouragement and friendship.

    I can't imagine the pain and discomfort you must be in from the cancer and subsequent treatment you have endured, will they try a different chemo in the future?

    It is interesting how others respond to hearing the cancer diagnosis. I know what you mean, many people like to know absolutely everything about everything, which helps them to make informed decisions and even perhaps helps to give a sense of being in control partly about what is happening.

    You are not alone in not knowing all the ins and outs. I was the same.

    Before my diagnosis, still waiting for results, I knew I had to stay away from Google, and all it has to offer on the subject of breast cancer. Reading all of that would not help me, but it would breed fear, which I was already fighting. So when the diagnosis came, and I had great consultants, Dr's etc, I looked at my husband in complete shock saying 'this isn't right, it shouldn't be happening', and asked the consultant to 'please check the records, you must be looking at someone else's notes there', to be informed after he checked, 'No, Louise, these are your notes'! I turned to him and said, 'right then, lets get on with it, I am driving to France on July 23 it needs to be sorted by then! I don't need to know the ins and outs, lets just get it done, I'm not having this'.

    And that's how it all began, and continued. There was very little I knew about the cancer, etc, until much later when my clinical oncologist, and my surgeon on two separate occasions, let slip some details. To be honest once I heard them, I was in shock for a while after, but I was so very glad I hadn't known at the beginning.

    Sometimes it isn't always helpful for you to know all the details, as long as you are making that decision for yourself. You have to do whatever it takes to ensure you get through this, some need to know, others don't. It's personal to you and how you can fight it the best way.

    Anxiety, depression, fear are all very common ailments that accompany cancer, they just seem to hitch a ride it appears! You are not alone in that either, you will find from people here, many have struggled and are working through these things. If you are able to talk with someone that will help, of course we are here for you, but you may need someone 'on the ground', locally to you. The Macmillan Cancer Support group are fabulous, you can contact them, they can provide support to you and your family, in several ways.

    I hope to chat with you soon, take care,

    Lou x

  • RobertARobertA Posts: 548 ✭✭✭✭
    edited April 9

    Hi @Poppypip

    Lovely to hear from you.

    You have been through so much already and it is really not surprising if it is all wearing you down. 

    I smiled to myself when you mentioned the dark picture painted by your surgeon. Mine was so negative that I rushed down to the bank with my wife to change my accounts into joint names, showed her how to complete the tax reurn and reviewed my will. Seriously - and I am still here 2.5years later and going nowhere for a long time yet.

    I also found that the medical people were very good at keeping me alive but not so hot at talking about the physical and mental side effects that a cancer diagnosis always brings. I was fine at first, but after a few months, I started to feel kind of lonely and despondent even around family.

    Lou mentioned MacMillans . If you are feeling overwhelmed and down, please ask for help. I have experienced depression and needed professional support to get through it. You have been through so much more than I have and I really admire you for telling us your story. MacMillan Cancer Support have been brilliant for me and saw me through a tough time, providing me with a counsellor free of charge. I now do some voluntary work with them myself which I enjoy. 

    My wife is a volunteer with Jersey Hospice which has a daycentre with coffee and cake, quiz sessions. craft sessions, yoga, mindfulness, a choir, and weekly discussion groups which I often attend. If there is one in your area, you may find it worthwhile getting in touch.

    I also love this community. It is full of courageous, caring and funny people, new friends who don’t mind when you are having a bad day and who celebrate the good ones with you, You are most welcome and I hope you will keep in touch.

    Rob x

  • LynnieLynnie Posts: 4

    Hi everyone

    I have inflammatory breast cancer and start chemo at the end of the month. Rather daunting reading all your stories but fortunately I’m generally a positive person and hope this will help me through the difficult journey.

    I’m going to give the cold cap a try, although I’m going for wig this week (I’m clearly not THAT positive 😂). What solutions have you ladies found for the loss of eyebrows? I’m guessing they’re definitely going to go?

    Thanks

    L

  • RobertARobertA Posts: 548 ✭✭✭✭

    Hi @Lynnie

    I am not able to offer you any advice regarding your question, but I would like to welcome you to our lovely, friendly group.

    Yes, your journey is daunting, but it will be worth it in the end and we will be here to chat and support you along the way,

    Rob x

  • daisy99daisy99 Posts: 1

    Hello ,

    I'm new to this site and have been reading through some of the letters and replies, hoping to connect with anyone in a similar position. I was diagnosed with endometrial cancer i October 2015. followed by hysterectomy, chemo ,radiotherapy and brachitherapy. I wore a wig and eventually went back to work, anxious to get things back to normal.

    Unfortunately, in October 2018, I found a small lump in my groin which, after a CT scan turned out to be the same cancer returning, to lymph nodes, lung, liver and bones. I had no other symptoms or warning.

    I started six sessions of chemo in January 2019, and am now on a treatment of alternating Tamoxifen three weekly and Megace three weekly. It seems like a nightmare I can't wake up from, was told it is treatable but not curable. Have been taking sleeping tablet s since diagnosis to get me through the night. The cancer has stabilised for the moment but Im living in fear. Thanks for listening xx

  • GrannyMoshGrannyMosh Posts: 19

    Hello everyone, nice to 'meet' you! I'm Brenda, currently undergoing treatment for breast cancer. I had a lumpectomy 4 weeks ago, now nicely healed, and will begin a course of radiotherapy on 20th May. I'm due to see my oncologist next week, regarding antibody therapy and Herceptin. I'm feeling good, healthy and positive, but would be grateful for any tips regarding these treatments. I live in Germany, moved here in September 2016 to be with my son, daughter-in-law and granddaughters, and love it!

  • RobertARobertA Posts: 548 ✭✭✭✭
    edited April 28

    @daisy99

    Hello Daisy

    Welcome to our lovely community. I am sure that you will soon be hearing from someone who is in a similar situation.

    A different cancer of course, but I am also living with incurable but treatable cancer. It takes a lot of getting used to and I am not surprised that you are finding things difficult at the present time. You have a lot to come to terms with.

    I found myself really struggling emotionally following my diagnosis and I eventually went to see my doctor who diagnosed me with depression. He prescribed Sertraline tablets for me. They are not a 'Happy Pill'. They simply boost the low serotonin levels in the brain and they helped me to battle anxiety and depression. It did take a couple of weeks before I started to feel better but I think they did help.

    I also found MacMillan Cancer Support who are a brilliant source of support and information. They also arranged for me to receive complimentary counselling which has proved invaluable. Another great organisation for people living with cancer is Hospice. My wife is a volunteer at the local one - they are so much more than just for end of life and you could find them to be a great source of help and information.

    It is a shock to be told that your cancer is incurable even though it is treatable but you do get used to it and you can still live a full and happy life.

    May I also suggest that you check out ‘Untire’ under the ‘Coping With Treatments and After Effects’ category. They will have recommendations for your sleeplessness.

    This is a lovely community full of courageous, caring and funny people, new friends who don’t mind when you are having a bad day and who celebrate the good ones with you, You are most welcome and I hope you will keep in touch.

    Rob x

  • SunshinedaffSunshinedaff Posts: 741 ✭✭✭✭

    @GrannyMosh

    Hi Brenda,

    Welcome to the community, it is lovely to ‘meet’ you too!

    Although I too had breast cancer, I didn’t have antibody therapy or Herceptin treatments. I know others here are having some similar treatment to yourself. I had chemo, a mastectomy and radiotherapy.

    I am very glad things are going well so far for you and hope you are fully recovered from the lumpectomy. Radiotherapy isn’t as bad as you might be imagining. It is just like having lots of X-rays really. One of the main things is you will probably get very tired as the treatment goes on, it’s cumulative. Rest as much as you are able. When you first go, it will take a long time to get you lined up in the right position, you need to stay very still. The actual zapping doesn’t take too long. Keep an eye on your skin, use moisturiser daily, let the nurses know if the skin blisters etc. You may get ‘sunburn’. It is great that you have your family around you for support in Germany. I used to work in Germany many years ago, in the Black Forest region, very beautiful area.

    Please let us know how you are doing Brenda, I’m sure you will get to know us all soon. We are a chatty bunch, all supporting one another.

    Lou x

  • GrannyMoshGrannyMosh Posts: 19

    @Sunshinedaff

    Hello, Lou, and thanks for your kind welcome. Yes, I am fully recovered from the lumpectomy, thanks. I just feel normal, which in itself is pretty good, since I also suffer from fibromyalgia! I had one session of chemotherapy on 23rd January. Sadly, I was very ill immediately afterwards...whether it was the chemo, or the infection which turned to sepsis and put me into hospital for around 8 weeks, I don't know, but I ended up having dialysis to support my kidneys, which at one stage were down to 10% function! It all seems like a bad dream now, and I am back to running around after two little granddaughters. The staff at the hospital here in Osnabrück are very helpful, the oncologist is supportive and approachable, and the few radiotherapy staff I have met so far seem a jolly bunch, so I am hopeful that this part of the treatment will be plainer sailing 🙂. I have Dermol 500 lotion to use for washing and moisturising, and have found some excellent moisturiser which contains 15% urea. Is that suitable too, do you know? Or should I ask at the clinic? I know the urea holds in moisture, just not sure if it is compatible with the rays.

    Alles Gute!

    Brenda x

  • SunshinedaffSunshinedaff Posts: 741 ✭✭✭✭

    Hi @daisy99

    A very warm welcome to you to our wonderful community, I hope you will find it a place of support, encouragement and friendship. Everyone here is either living with cancer, had cancer and come through it or are supporting loved ones going through it. We all try and support one another, on good days, bad days, and anything in between.

    I am so sorry to hear of the new diagnosis you have been given, the shock and disbelief , if that is the right word, must be huge coming out of the blue.

    Although I was diagnosed with a different cancer (breast cancer), I was taking Tamoxifen after chemo and my treatment. How are you getting on with that?

    I think as Rob( @RobertA )has already mentioned the Macmillan Cancer Support Group are a great place to find actual ‘on the ground’ support. Adjusting to the new diagnosis may take a while. We can only keep hoping that there will be breakthroughs in new treatments that will help to change your treatment in the future. Please keep in touch with how you are doing, hopefully someone else in a similar situation will come forward to chat too.

    Take care, Thinking of you,

    Lou x

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