Living with terminal illness support

Ruth 6 years ago

1 reply

I'm still finding it difficult to get any emotional support. I spoke to my :gP but all he could offer was 6 sessions with a counsellor and when I phoned they said it wasn't the sort of thing they could help with. I need to be able to talk to someone about how I feel about dying, my fears etc. I have done an advanced directive refusing all treatment but I worry what that means. Will I just be left unable to breathe? Will I be able to go into a hospice. I dread dying in hospital like my dad. What can I expect? I cant talk to my :gP cos he has only 10mins. I need to talk with others facing the same fears but the local PF support group is just social and I'm the only one alone. My family think im coping really well and I can't talk to them about my fears because that would just reinforce their own fears. Most days I cope but sometimes it just feels too much. I have no close friends or partner so no one to lean on. What hospice facilities are there near me (ng13). I looked on the nhs web site and they couldnt find any. My consultant noted last time that he thought it might be the start of a decline but what can I expect?. I look at my younger grandchildren and know I won't see them grow up.I get so depressed and frightened but I'm already on antidepressants. Is there a local group for people with terminal illness? Any help would be great.

Support 6 years ago

Hello Ruth,

I’m sorry to read about your illness and all you are dealing with at the moment. It is natural to have fears about what to expect. Coping with change and uncertainty can be challenging. There is no right or wrong to way feel, and you may find that your emotions fluctuate regularly and rapidly. Many people tell us that they feel concerned and worried about what death may look like or feel like for them. Here at the Support Line we often talk to people about these concerns and would be more than happy to have a conversation about these things with you.

There is information on our Marie Curie website around living with a terminal illness, including end of life experiences: https://www.mariecurie.org.uk/help/support/terminal-illness. We also have lots of information about advanced health care planning which covers things such as treatments you would like to receive and where you would like to receive end of life care too. You can read more information here: https://www.mariecurie.org.uk/help/support/terminal-illness/planning-ahead/advance-care-planning.

Hospice UK is the national charity for hospice care and you can search for a hospice near you on their website: https://www.hospiceuk.org/about-hospice-care/find-a-hospice.

You may already be aware of The British Lung Foundation. They feature information on their website about PF that you may find useful. This information includes facts about pulmonary fibrosis, including how it may affect your breathing. You can also search for local support in your area and there is also a helpline you can ring for information and some support. All this information can be found at the following link: https://www.blf.org.uk/support-for-you/pulmonary-fibrosis.

If you would like to talk about things in more detail please call our Free phone Support Line on 0800 090 2309, or drop us a line via web chat https://www.mariecurie.org.uk/help.

Take Care

Ross 

(Marie Curie Support Line)