New to Share? Come and say hello!

FormerMember
FormerMember
  • 854 replies
  • 4 subscribers
  • 868256 views

Whether you’re here to talk to others, join a group, ask questions or just listen, everyone is here to offer emotional and practical support to help you with your cancer journey.

We know it can sometimes be confusing when you first arrive, with lots of forums and groups to choose from. So this thread is to welcome you, make friends and help you find your way around the site. Whether you are a patient, family member, friend or a carer, feel free to post any thoughts or questions here and other Share users will be happy to help you navigate around the site and find what you are looking for.

  • FormerMember
    FormerMember
    Hi Everyone,



    I just wanted to say hello to you all, that are new to the site, people here are really understanding and a great support through the hardest days of our lives.



    Powneygirl, I just wanted to let you know I understand exactly what you are going through. In October we found out that my mums lung cancer had spread to her brain, if you ever need to talk, let of steam or just need to shout, I'm here to listen. I might not be of much help, but I do understand what you are going through.



    Love to everyone going through this, be strong and keep fighting.



    Take care

    Kelx



  • FormerMember
    FormerMember
    Thank you so much for offering your support Kel. I am amazed by everyone on this site. My partner and daughter are fantastic but they aren't going through exactly what I am which is why I decided to post.
    How do you get by? Any suggestions for my visit to Dad next week?
    So sorry to hear about your Mum, how is she?
    big hugsx
  • FormerMember
    FormerMember

    Hello

    I am new I have replied to some correspondence but I really dont know what I am doing!!!!!

    My husband died on June 26th after a late diagnosis of stomach cancer which had spread to his liver and lymp nodes and lungs we had 15 days from diagnosis to his death which was a horrible roller coaster for me and our two daughters and son. He had attended the GPs for two years before this diagnosis but they hadn't picked on it which makes me really angry and 5 months later I still feel angry we had little help from the consultant who just seemed to want to get him out of the way home to die, we wanted home and although our local cottage hospital was excellant we had to push to get him home where he wanted to be and to die which he did after just three days at home. The district nurses were excellent but I now feel angry that I had no discussions on what kind of stomach cancer it was or what the prognosis was, know your enemy, and had to push to organize the equipment needed to get him home maybe this was more difficult because we live in Highland Perthshire, but were you live should not make any difference to the provisions made for home care.. When you have no experience of this and your thrown in at the deep end it is really desperate to stay afloat and you are trying to stay strong to help your loved one who is fully aware they are dying. Hey its five months now but I am struggling to stay on top especially wih Christmas and New Year looming . I feel like shutting myself away yet I can't because of family. Has anyone else had similar late diagnosis, it was hideous how has everyone else managed with equipment provision for taking their loved ones home.
    any discussion at all would help I am hoping I can do something up here to help anyone like us with such a dreafull diagnosis.
    love to here from anyone
    Yvonne

  • FormerMember
    FormerMember
    Dear Powney girl
    I'd just written on to this site not knowing what I was doing and I read your post. I just know that when my husband had his late diagnosis of terminal cancer and our son and daughters were told they visited and were so positive and spoke of there love and what a great family we had, talked of happy times and how much they loved him do that please just show your love keep the weeping till later he will be finding it hard enough he needs your love and support , with love Yvonne.
  • FormerMember
    FormerMember
    Hi Yvonne

    I know just how you feel. My family have been through a similar situation 6 months ago. My Dad had been to the GP complaining of tiredness, breathlessness and a pain in the back since Christmas 2007. He finally got to have hospital tests and scans at the beginning of March (3 months on) which showed he had colon cancer which had already spread to the liver and lungs.

    Nobody talked to us or Dad about his situation apart from the Consultant that he saw just said to him "well there is nothing we can do for you -if we gave you chemo it would probably result in a heart attack due to your age - he was 78" My Dad, the gentleman that he was, stood up and shook the consultant's hand and thanked him for his time (my sister went into the consultation with him and said that she had to restrain herself from saying something to the consultant). Had I been there I am sure I couldn't have restrained myself - he had no bedside manner at all.

    One thing that really got to me was when the District Nurses came in on their daily visit towards the end to change the syringe driver they always said to him " oh you're skin and bone - where can we find any meat on you to put this syringe driver?" HOW INSENSITIVE!!! I couldn't believe they would say that to a patient!

    Sorry I'm rambling now but it just brings back memories of the horrible nightmare he and we went through. At least he is at peace now.

    Regarding equipment, they did eventually send a hospital bed to our house but by then it was far too late and he couldn't be moved. We had to ask for everything and when you don't know what's available to you you don't know the questions to ask. Far from acceptable.

    Still very angry and it's six months on!!

    Love to you and your family

    Liz xx

  • FormerMember
    FormerMember

    Hi to all of you who feel that they didn't get the right diagnosis or the right help, have you noticed the board "Have your say, Improve Cancer Care". Look under Share left hand side near top of page, half way down in blue. If you talk about your experience on there it may go some way to improving care in the future.

    Thats not to say don't post here by the way! Its just an added thing you can do. My thoughts & prayers go out to all of you.

    Becky, have you tried looking under Tags? left hand side again. If you put a search in for "Ovarian" you may come up with a thread where there are others going through the same journey who can help you.
    Just a suggestion for all, would you like to fill in a profile and open it to view? Its not compulsory, but some people tend to respond better to an open profile, and it saves keep repeating yourself all the time. Just put as much or as little as you like. Have a look at others if it helps.
    Sending love & hugs x x x x x

  • FormerMember
    FormerMember
    Hi Powneygirl,



    I just sent you a friend request so we can PM. Yvonne is right, enjoy every moment you can with your Dad, make as many happy memories as you possibly can and try to stay positive and upbeat for him.



    We have had a very hard week this week, but have finally got my mum the care she needs, she is spending a few days in a hospice to get her pain under control, I am so relieved for her to finally be getting what she needs. She slept quite well this afternoon and actually looked comfortable.



    Lots of love to everyone going through this.

    Kelx



  • FormerMember
    FormerMember
    Hi.

    I'm not sure I'm in the right place here but I'm looking for some help. My best friends Mum, whom I have always been close to, has just been diagnosed with a form of throat cancer, I'm not sure what type it is. The problem I have is that I now don't know what to say to her. I'm scared of saying the wrong thing as I have a habit of doing :-). I thought maybe I could get some pointers on 'what not to say' from you guys.

    Thanks.
  • FormerMember
    FormerMember
    Hi PPenguin
    I understand your fear. I think we all have them. Most cancer patients want people to treat them as normally as possible I find. The first time you see her, I would give her a hug and tell her you are really sorry to hear about her illness, and take it from there. If she wants to talk about it, she will, if she quickly changes the subject, maybe then is not the right time. This link may be helpful. http://www.cancerbackup.org.uk/Resourcessupport/Ifsomeoneelsehascancer/Talkingtosomeonewithcancer
    Nice to know you care
    Love Barb x
  • FormerMember
    FormerMember
    Hello everyone,
    Don't really know where to start, Dad is 80 years (young) had part of his lung removed in 2000. recovered well, didn't need any other treatment then. Has been poorly since June 08. Had lots of investigagiotns re his weight loss, low blood, etc,etc,etc. eventually saw chest consultant on
    31st October. He sent him home to await a bronchosopy test which was due to be performed 28 November. On 1st November he was spitting up blood we got an ambulance and went to A&E. thankfully the Doctor there admitted immediately. He has now had two blood transfusions and all his tests done. Last thursday 20th Nov. he was told that the cancer is back in the same lung and his chest wall. I'm still waiting to find out if he will be able to come home or not. He is very breathless and getting quite distressed. Going to see consultant this afternoon. We've been here before only I don't think he'll make this time, even thoug I suspected this for a wee while now, I can't stop the feeling of shock and despair I have. and what if I can't do the 'caring bit' at home, that everyone expects me to do. Oh! I hope it will be okay.

    thanks for being able to write this down

    Lily of the Valley
    X