Hello and welcome!

hessomhessom Posts: 112 Community Admin
Hi there! Welcome to your new Community forum, and thanks so much for joining us!

We've posted some discussions across our 4 different categories to help you get started, but feel free to start your own - this is your space and we want you to shape it into something that works for you :) 
If there's anything we can do to help you feel more at home, let us know! Drop me a message or email us at [email protected]


First of all, let's start with some introductions - if you'd like to say hello, try posting here with a little bit about yourself and why you've joined our community.

Just remember to keep things like your surname, email address and other personal details private - keeping things a bit anonymous helps us to keep this space safe for all our users :+1:

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Comments

  • JaneyBJaneyB Posts: 8
    I’m Janey and I have just had DIEP surgery after having a double mastectomy for breast cancer in 2010. I had implants originally but they didn’t work out and having moved house to a new area where they have a fantastic onco plastics department I went for the big surgery. I am married and have two grown up boys and a dog called Toby. He’s a big dog in a little dog’s body and has been so gentle with me since my op. 
    I am well and enjoying an active retirement. 
  • SunshinedaffSunshinedaff Posts: 763 ✭✭✭✭
    edited November 2018
    JaneyB said:
    I’m Janey and I have just had DIEP surgery after having a double mastectomy for breast cancer in 2010. I had implants originally but they didn’t work out and having moved house to a new area where they have a fantastic onco plastics department I went for the big surgery. I am married and have two grown up boys and a dog called Toby. He’s a big dog in a little dog’s body and has been so gentle with me since my op. 
    I am well and enjoying an active retirement. 
    Hi @JaneyB , welcome to the community! Wow! That's a big op, so glad to hear you are 8 yrs clear aswell. It is always good to hear encouraging news like yours. Wishing you a speedy recovery from surgery so you can continue to enjoy life. Best wishes. 
  • BarbaraBarbara Posts: 9
    Good to hear you are doing well
    best wishes 
    Barbara😊
  • JaneyBJaneyB Posts: 8
    It is hard to know what to do for the best. I had implants originally but it didn’t work out and I’ve now just had DIEP reconstruction .
  • BarbaraBarbara Posts: 9
    Good luck, I don’t know too much about reconstruction I only know a girlfriend of mine had implants and they were unsuccessful 
  • hessomhessom Posts: 112 Community Admin
    Hi I'm Jackie and undergoing chemotherapy for the second time for Non-Hodgkins Lymphoma.  I was diagnosed 9 years ago and had my first chemo three years ago, which I was hoping I would get a little bit longer before it returned, but alas here it is again.  Last time it felt surreal, I lost my hair, my toe nails were terrible, my feet felt as if I was walking on sponges (and I'm afraid didn't return to normal) but I had all my family and friends around to help me through it. This time I have been told I shouldn't loose my hair and my nails will probably be okay, all because of the Cancer Research being done and I am on a different therapy. My family and friends are terrific they are the people we need in our lives when you are feeling down.    I still have 8 chemo's to get and that will take me up to 6th February, but as long as I keep well I will get better. Hopefully at the end of this I maybe be able to get rid of the tumour by having a hysterectomy, please keep your fingers and toes crossed for me.  
    Hi Jackie/Rupertbear2018! Welcome to the Community. I'm so sorry to hear that your cancer has returned, but hope that your friends and family will be with you again through this difficult time, they sound like wonderful people and it's great to see that you're staying positive. Spongy sounds very awkward! I'll be sure to keep all fingers and toes crossed and hope that the side-effects are better this time round :blush:
  • hessomhessom Posts: 112 Community Admin
    edited November 2018
    Hi Robert and Welcome!

    It's really nice to hear that you're still so active, both in the activities you enjoy with your wife but also pursuing your own personal interests and hobbies, whilst also managing the complexities and challenges of undergoing treatment! Do you feel this has helped you with your diagnosis and treatment in general?

    We want this Community to be an active and engaging site, and built it because we are so inspired by the members of our Facebook group, and we know that communities are a valuable and helpful resource, so thank you for joining :)

    We're actively looking at how we can help more men on their cancer journey, whether as a patient or someone that is helping their loved one through cancer.  From research, we know that, in general, men are more likely to seek help or assistance online if there's some level of anonymity, and so we believe this Community is one way we can help them more easily. If you have any ideas you'd like to share please don't hesitate to contact us (you can private message me directly, send us an email at [email protected] or even start a discussion right here on the Community!)
  • RobertARobertA Posts: 574 ✭✭✭✭
    Thanks for the welcome Hessom

    The treatment I receive causes extreme tiredness and even though I sleep pretty well, I still wake up in the morning feeling anything but fresh. 
    I try to fight back by getting up at 7.30am every morning and getting on with the day.  I find that going for a long walk freshens me up - indeed any kind of exercise does that.  
    I am lucky to have my music as when I am sitting at the keyboard, or just listening, I always feel happy and relaxed.  So yes, I am convinced that having interests and hobbies will put the cancer and its effects to one side for a while.

    Unfortunately, we men do tend to keep things under wraps. I do not, and I actively press friends and acquaintances to have regular check ups. If I had done so myself, and my cancer had been caught earlier, I might have been cured.
    Men do not seem to like talking about their fears and vulnerabilities and I guess you are right, that offering anonymity is a good start. It is getting them involved in the first place that's the problem though.  Perhaps, we need to get their wives and girl friends to nag them a bit.
    I once wrote about it in the 'letters to' page of the local newspaper and it started a little thread which grew. Obviously, people need to know the organization exists in the first place. 
    I found 'Living With' by googling.  My friends and family were great, but I needed to join a group of people who understood what it was like to experience the disease and I was delighted to find you. 
    Cheers
    Rob



  • RobertARobertA Posts: 574 ✭✭✭✭
    Hi @sasha_ruby1219. Yes, I have done that too - very frustrating.  
    Sorry to hear about your diagnosis.  You will find that you are amongst friends on this site and many of the ladies will know what you are going through and will be there for you. 
  • hessomhessom Posts: 112 Community Admin
    edited November 2018
    Typed out a welcome speech and then decided to make a profile picture, so lost the speech! I will try again tomorrow. recently diagnosed with breast lump and facing chemo. Thanks for welcome. I will fill in more tomorrow but going to bed now as wrecked!!  
    Welcome to the Community @sasha_ruby1219 - and sorry you lost your draft message! We'll look into fixing this so that drafts are saved!
  • SunshinedaffSunshinedaff Posts: 763 ✭✭✭✭
    Hi @sasha_ruby1219
    Welcome to the community. Look forward to chatting with you, whenever you feel like it. I have come through the other side of breast cancer, but still feel like a newbie in remission. Even though this is a new forum, you will find lots of support here. Hope you were able to get some rest last night. x
  • 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
  • Maggie1980Maggie1980 Posts: 6
    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 
  • hessomhessom Posts: 112 Community Admin
    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! Welcome (again!)

    Why not try starting a new discussion for tips for chemo? Let me know if want any help with this and I'll happily send you a private message.

    We have a guide on our website you might find helpful (here) hope this helps, although I'm sure the Community has lots more great information.
  • hessomhessom Posts: 112 Community Admin
    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 Maggie, welcome to the Community!

    I just commented the same to @sasha_ruby1219 but this guide might be helpful for you too! You can check out our chemotherapy guide here but you're also free to start a new discussion on this topic! (Let me know if you want any help with this :smile:


    We've also got a specific discussion around lung cancer here as part of Lung Cancer Awareness Month, there may be some helpful information and definitely some helpful folk there too :smile:

  • Jackie_BuxtonJackie_Buxton Posts: 21 Cancer Author 🤓
    edited November 2018
    Hi there! 
    I’m Jackie and was diagnosed with breast cancer in December 2013. I wanted exactly this kind of place to exist when I was first diagnosed but just couldn’t find anything online that was like this: the right mix for me of being informative but as upbeat and positive as possible. I’m thus delighted Live Better With and its community has since been established and am keen to support it where I can.
    I was asked if I’d take up a roll of, ‘Cancer Expert’ and while I’m not sure I’m really expert in anything (!) I do have some insight into the world of cancer through my own experiences and through writing my blog and subsequent book: Tea & Chemo. I’m happy to help where I can. I will leave you with this for now: if you’ve just been diagnosed, hang on in there! The waiting and the not-knowing are, in my humble opinion, the worst. Once you get a treatment plan and get started on your treatments, it can all feel slightly less terrifying  :) 
    Big hugs to all x
    Check out my website and my award winning book available at LiveBetterWith.com
  • PiperPiper Posts: 3
    Hi There
    I am new to this sight hence learning how to navigate myself around it to best get support. I have undergone surgery for colon resection with ending up having to live with a colosomy☹️. I had chemo and radiation before surgery and then chemo after surgery. Then I had a liver resection as I had a spot. Now that that is all done I am not going for any more chemo as I am contending with neuropathy that has sprung up on me a few months after I ended my chemotherapy. So not sure if or when this will go away. I am clear right now and will be going for blood tests every three months with another CT scan down the road. Anyhow... feeling a little left behind with my healthcare team now that it’s await and see...so thought I would reach out to cyberspace friends😁
  • hessomhessom Posts: 112 Community Admin
    edited November 2018
    @Piper Welcome! It sounds like you've faced a lot of complications on your journey? Sorry to hear you're feeling left behind with your healthcare team! I'm sure the Community can help make you feel welcome and feel free to start a discussion about any specific issues you want to discuss!

    Also, let me know if you'd like a hand with understanding how to navigate these forums! We've put all discussions in a single page, under the discussions link at the top, but we've also got specific categories, so you can create you discussion (using the New Discussion button) and assign it to a category, it'll still show up in the discussions tab too so it's easy for others to find and help with :smile:  Hope this helps!

  • RobertARobertA Posts: 574 ✭✭✭✭
    Hello @piper
    Wow. You have had a tough time, but you have come to the right place to find friends who have/have experienced cancer in all its guises and who understand the emotions and issues that come with it.
    I know, you can feel abandoned when the chemo/radiotherapy finishes even though it is essentially good news.
    I also have blood tests and an infusion every three months and feel a little frisson of anxiety every time
    Welcome to the group.
    Rob 

  • PiperPiper Posts: 3
    Thank you Rob for your kind words and insight.
  • PiperPiper Posts: 3
    Thanks for the welcome message and navigation tips, Hesson. I will look at  some of the specific categories.
  • Tre_Tre_ Posts: 3
    Hello, just a little intro, as it’s rather late and I should be asleep really !! 
    I look after my mum who was diagnosed with ovarian cancer last November,( while I was on my holiday of a lifetime in Oz,on my own, great timing, NOT). She’s had a few stints in hospital, lost her hair, changed treatments 3 times, spent last Christmas in hospital,hair growing back 😀,felt positive,felt depressed, but looking forward to this Christmas 👍. My Dad has been amazing, my brother has been useless, which makes me a tad cross!! It’s hard to see her feeling so crappy, but great when she’s good. The future is uncertain, we just take each day, like everyone else on this site. Oh, that wasn’t so quick after all, so goodnight, and chat again to you lovely peeps I hope x
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