Scared

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Hi

Been told I have months rather than years. Just going to give me treatment to keep symptoms under control. I'm scared, keep feeling panicky and although I have been able to put on a brave face in front of doctor and family I just don't know how I come to terms with this. I say the right thing like I'll have to take each day as it comes and I'm going to try and carry on as normal but get out and visit places whilst my health allows it but living with this isn't going to be easy. Help please.  Not updated profile with the latest news but you will get my history.

Julie G

  • Hi Welcome to the groups.

    We have all been where you are, please do your profile, will save people asking you, what type cancer,  treatments you may have had and so on.

    You will get a lot of support here, we all do, and we hold each other up at times..

    We can moan, scream, laugh cry, how ever you may fill, we have all been there.

    I was diagnosed stage 4 from day one, did not think i would get threw the first few months, and that was in 2016.

    Know one knows, they do not have a crystal ball, and every one is so different, do not get me wrong, it is and can be hard, though one can and does, get threw it, the best they can.

    Others will come along and welcome you, though i wish you had, not had to join, though it is a club, we are all in, threw no choice, though it is a good club, full of,  lovely people, all on this journey together.

  • Hello Julie G and a warm welcome to the forum, so sorry to hear what you have been through and we all understand what you are going through emotionally. I know you never ever thought you would be joining a community like ours, none of us did, but we id and we are a good bunch, and support each other, and now you, the best we can, Whether you need advice, support or just a chat you will find help here. We are serious and compassionate when we have to be but we can have a laugh as well. I am sure many of the guys on here will be along soon to welcome you, take care.

    Eddie

  • Profile  done and have read, been a long road, and one we all travel at times, keep posting, and some one will always reply.

  • Hello Julie G We are here to support you. It certainly isn't an easy thing to deal with. We as incurables don't know when the end of the road is but nobody does. All I can say is, there are people on this forum who were given months to live and survived their sell buy date. But I hope that doesn't sound like a cliche but as sense of, hold in there. You are doing the right thing by taking each day as it comes.

    Judy

  • Hi Julie just read uour profile, you have been through the mill. I do feel for you, I do remember having the same and feeling scare and having no control over what was left of my life, one day I actually stood in the kitchen and screamed my head off, it made no difference, but got a bit of frustration out.

    Come on here and let of steam, talk to your macmillan  nurse and ask for some counselling it does help a lot. Keep posting, be kind to yourself xx

    Moi

  • Hi  

    Hello Julie, I am so sorry to hear this news. I had thought about suggesting this group to you but I'm pleased you've joined us here, you will find a lot of support. Our stories are kind of similar apart from the types and I really feel for you. I noticed that Moi2 suggested counselling, it is a good idea, it helped me a lot. Try not to focus on the time factor, they can still offer treatment to control symptoms. A lot of members in the group have gone well past their prognosis. This is a massive thing for you to comprehend. When you feel up to it, it may be an idea to ring the Macmillan helpline. They will be able to suggest things for you and they are very kind and supportive. https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support

    The link above is for the counselling offered by Macmillan, but please ring them as they are very helpful. Take care and message me any time.

    A x

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm

  • Hi Julie (Lkg), Welcome to the Group. On reading the replies here I'm sure you will see that there is nothing written in stone as to how long we have to live. Like Ellie, I went straight to Stage 4 and they were talking about palliative care. Then my oncologist found a Drug Trial for me and the rest is history. That was in 2013. So never say never and keep hoping! This is definitely the roller coaster of a ride. I can't tell you it is easy but it is worth it to have extra time with your family. Remember they are saying Incurable not Terminal, there is a big difference. All of us in this group are incurable but lots of us have been around for a while. In front of others, I think we all put a face on but in front of your oncologist you need to be honest. If they don't know how you are feeling, then they can't help! 

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi

    I actually rang the helpline this morning and spoke to someone who sent me a link for Counselling, think it was through BUPA. I certainly need to do something as I am struggling. Just feel my head will explode. It is not knowing how bad things are going to get no matter how far down the line. Not being able to plan anything is frustrating. I tell myself just take one day at a time but I still get panicky especially in the evening. I'll have a look at the link and get the ball rolling.

    Julie G

    Jkg 

  • Hi Annette I did reply to email but I don't know were it went. I'll  have another go tomorrow xx

    Moi

  • Hi Julie, 

    I am so sorry to hear that you have been advised that the disease is progressing and that you may have limited time remaining. I am not sure if that is what has been discussed and I know that when I have had meetings and reflected I cannot recall who was there and that I had infact not retained quite a lot of the information. It’s normal to almost disassociate in this situation as a protective strategy almost. While I have survived for longer than was expected I have had times where my thinking is very circular and gets quite bleak. I have found that developing the means to mentally manage this through distraction and actively managing how much time I can ‘permit’ myself has been helpful. I would suggest that you urgently seek counselling or psychological support. You describe how you are presenting a positive and pragmatic persona to others. This can be helpful for others and yourself but I also believe that your own emotional needs can be suppressed and you need a safe and private environment to share your fears and concerns.  Health and illness is unpredictable and sometimes it is through kindness that you may be urged to make the most of your time. I don’t think it’s easy to be predictive of remaining time until we all reach thst real end stage period and it becomes very obvious.  You are most definitely not at that stage and I would hope you can have opportunity to develop some psychological strategies to manage your day day to worries and you can have some relief from distress and enjoy each day and live your best.  It is hard to reach out and you are brace and want to care for yourself which is very positive and I do think that taking some active steps to sustain yourself will be worthwhile.  Virtual hug and thanks for your honesty.  

    LinziR