Feeling Lonely

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Hi, I've been a member on here for a while and may have posted once or twice before but I guess that this is the first time I've actually felt in need of some support. 

I was diagnosed with metastatic melanoma in August 23 - no primary found, secondaries in lungs.  I have been reasonably positive and tried to remain upbeat as much as I can but I am suddenly aware that the little texts, messages and phone calls from both friends and family have been tailing off and I am suddenly feeling lonely and quite isolated, just at a time when I feel I need more support. My husband and son are wonderful but friends of 20 years plus and my sisters just don't seem to be around much any more.  

I am feel particularly vulnerable at the moment as my oncologist and respiratory team seem to have different ideas as to what the current problem is. They are now bringing my PET CT scan forward by 3 weeks to try and fet an answer.   Its the first time that I have been truly scared and just feel I gave no support. 

Any advice you coukd give me would be much appreciated.   Thank you. 

  • Please do not fill a lone, some one always here, to  listen, when you are perhaps a little done,  reality at times, hits us,  we have all been there, and why not, we are human, though not super human,

    People do at times, start to take a step back, it can hurt, though i always think, if that is the way you want to be, so be it, no loss. That is me.

    Not sure about giving advise, not really qualified, though i know how you are feeling.

    I am not  lonely, though at times alone.

  • Hi J55, so sorry to hear about all you are going through, It's tough enough being in our situation, and we need to feel our medical teams are working together and our fiends and family are there for us when we need them, fingers crossed your PET CT scan gets your doctors working together on the best way forward for you, as for your sisters I would ask them why they don't come round, It maybe just a misunderstanding or they are frightened and maybe just need a word or two from you or your husband. As Ellie has said friends do disappear, I lost most of my non medical friends, "I was in healthcare", but moved on, I now go to a local cancer charity and my hospice for support when I need it, J55 in my time in healthcare I did a lot of cancer care and often the unknown primary can't be found because your immune system has taken care of it. I hope you post again you will always be among friends here, who understand what you are going through. bet wishes.

    Eddie xx 

  • Hi J55, This is a journey that is difficult enough without your Consultants differing in opinion. Maybe once you have had your PET scan results, they will then know enough to come to an agreement. If not and this worries you then you can ask for a second (or 3rd) opinion!

    I also was diagnosed with Malignant Melanoma Stage 4 after being told for months I had a Basil Cell Carcinoma that was easily dealt with, then after a PET scan I was told out of the blue I had MM Stage 4. Believe me when I say I know exactly what you mean about friends disappearing. At the start they would pop in for a cup of tea and a chat, then this happened less and less. I think it was because I was no longer in the 'circle' of friends from the badminton, tennis and walking clubs, so we were heading in different directions. One of my sisters is very supportive whereas the other one has buried her head in the sand. It's as if saying if she doesn't acknowledge it, it can't be happening. So she doesn't know how to deal with it whereas I have no choice.i was diagnosed in 2013 and a Trial Drug worked for me, however I am left with a lot of side effects and am quite immobile now.

    I think there is a huge difference between feeling lonely and feeling alone. I have felt both over the years. It's funny how you can be surrounded by people and feel alone or even lonely. This is the place to come for support. All here know what you are going through and as Ellie said, we are not qualified to give advice but we are here to listen if you want to rant and chat if you feel like chatting. I don't sleep well so I'm a bit of a Night Owl, so if you awake and want to chat, I'm usually around. Others are in different countries, like USA or Australia so their day is our night, I'm in Scotland. So please post as often as you like and the support here, I'm sure and hope, will surprise you. Do you have a date for your scan? Please keep in touch and let us know!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Thank you Ellie, it's taken me so long to write anything on here and I'm amazed at the sense of relief I have had just from doing that.  I guess I've realised that I just can't do this alone any more.

    Jean x

  • Hi Eddie,  thank you for responding so promptly.   The replies on here have made me realise that I'm not alone - merely watching from.the sidelines just doesn't give the same sense of belonging. 

    Jean x

  • Hi Annette,  thank you for taking the time to reply,  I've just had a read of your profile- wow, that is some journey you have been on.  The hardest thing for me currently is the side effects - they have been so much worse than I expected and continue to give me problems now.  I don't see them getting better any time soon.

    Somehow i instantly feel calmer just from having written my thoughts down rather than bottling them up.

    My scan is on Wednesday and I am.just waiting for a date to see my oncologist for the follow up.  Hopefully I'll get a definite answer this time.  I deal with facts so much better than not knowing. 

    Jean x

  • Hi , you're never alone on here we are all in a position of we "don't want to be in" its not the best but we are strong together, onwards and upwards is key , anything can happen to anyone at anytime so at least we have a heads up! That's how I feel about it. Keep posting and keep positive, have a lovely day 

    Lee

  • Hi J55

    Just dropping in to give you a 'virtual' hug! 

    Hope you are feeling better this morning.

    Kate

  • Hi  I am so sorry you feel like this. I think many of us here have experienced the same thing, I even had one friend that said to me “I thought you were over all that!” 
    It certainly is times like this that you discover who your true friends are. It is good to hear that you have good support from family at home. 

    I hope that now you have started posting you will continue to do so, you will find great support here from everyone in the group. Sending a gentle hug x 

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

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  • Hi  

    I'm sorry to read that you feel lonely and isolated. I'm glad you found us here and that you're feeling a bit better by posting. Everyone here is welcoming, supportive and friendly. We understand when others don't as we are all in the same situation. Cancer can be a lonely illness, as Annette has said, you can be surrounded by people but still feel very alone. People don't always understand cancer and think we are well because we look ok. It's often difficult for us as well, to describe where we are with the illness and treatment, as it can be uncomfortable to talk about and we don't want to go into lots of detail. I've seen people actually switch off as I'm talking to them. This then gives me even less confidence, the next time anyone else asks a question.

    Do you have a Maggie's Centre near you. They are often near hospitals that have oncology departments. They do support groups and short courses and would be a way for you to meet people. Would you benefit from counselling? Macmillan offer sessions, this is the link for information 

    https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support

    Your health team can also refer you or sessions may be available at your GP practice.

    I hope you are feeling a bit better. Keep posting, it does help. I hope the scan shows the way forward in terms of treatment. Let us know how you get on.

    A x

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