Carers only

Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.

I feel so lost already

annemt
Posted by

Hello everyone,

This is my first post on here. I hope you dont mind if it ends up being quite lengthy, I just can’t get my head round what has happened.

I moved in with my husband, Billy, in 1976 after only 3wks of knowing him so for 43years we have been together. He has always been a generous soul putting everyone first. I was 17 when we met and he stuck by me through a nervous breakdown and severe depression not long after (I have now been on antidepressants since 19) and have not always been easy to live with. When I found £10 in the street he suggested we give it to a homeless person. 

This past 18months have been so hard. For 4months at the end of 2018 he suffered with cellulitis (a severe leg infection), then I was sent for a colonoscopy by my GP because i had lost over 2 stone in weight and he was worried I had cancer (it was caused by IBS and stress as during the previous year we’d been working on our flat with the plan of selling and moving to the country), then in March 2019 our 35yrs old daughter who lives with us because of ongoing thyroid issues, started hearing voices and getting extremely panicky (she was diagnosed with ptsd) so he moved into her bed for a month while she slept with me and drove her to hospital appts despite starting to get back pain. Eventually in May he developed breathing problems and went to the GP who told him to go to the hospital immediately. He had 2litres of fluid drained off his lung, 10 days later he was rushed in again with a blood clot on the other lung and was referred to a lung specialist. A CT scan showed a couple of nodules so he had a PET scan to see if they reacted abnormally. When the consultant got the results he called to tell us everything was fine and we arranged to see him the next day to discuss any follow up treatment for his copd. The next day we were told that at a meeting with colleagues that morning another doctor wasnt happy with how the lining around his left lung looked so a biopsy was arranged for a week later. The results came back negative but 2 wks later he started complaining of pain which the consultant said must be musculoskeletal so we went to an osteopath but the pain kept getting worse. Eventually in Nov he had a CT scan followed by another PET scan and on 4 Dec we were told they were convinced he had terminal asbestos related lung cancer but another biopsy was arranged for 19 Dec. Since that biopsy he has not been able to get out of bed but although the results came back inconclusive and have been sent elsewhere for further analysis, he is getting worse by the day and I feel the end is near. 

I just feel so lost, confused and heartbroken. To be told twice he didn’t have cancer in the summer only to be told he was dying 4months later has been so much to take in and to see him deteriorate so quickly the past few weeks. my mother, who is in Croatia where she’s from and her family lives, has also been put in a home with dementia. We were planning on going to visit but I’m not sure she would remember me anymore anyway. 

Although I hate seeing him like this in constant pain, struggling to breath, literally deteriorating before my eyes, I am terrified of being without him. I’m also worried how our daughter will cope having ptsd already and our son, who has been doing his best to help financially, bringing meals, doing odd jobs, being a taxi service as i dont drive (thank god his work have been so understanding) and trying to be the man of the family but he has admitted to asking his GP for antidepressants and is having counselling. I don’t want to add to their stress but he has been my best friend, my soulmate, the love of my life, I can’t stop crying and i’m already starting to have times when I feel so panicky I struggle to breath. 

After my dad died in 2007 it took me nearly 8yrs to be able to talk about him without crying. He had a stroke but it took 3 days before i found out he was in hospital and saw him. He couldn’t talk but looked not too bad, then when I saw him again 3 days later he had completely deteriorated and a nurse told meshe was concerned because he hadn’t been fed for 6 days. I complained and he was eventually fed but it was too late by then and he died a few days later. 

Thank you for bearing with me.

Annex

LoobyLou49
Posted by

Hi and I'm sorry to hear what you're all going through.

Oh my but you have a lot on your plate. It would be well worth seeing if you have a Maggies Centre nearby. They run courses for those who need support and are spoken of very highly. You could also pop your post code in here to find out what groups are available in your area. As someone from a family with mental health issues I can see how difficult it must be for you so do please find someone to chat to either in a group or on our support line, which is open 7 days a week 8am to 8pm.

Big hugs,

LoobyLou
If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish. 

Click here to see how to add details to your profile. It helps everyone to see a little about you

annemt
Posted by

Thank you so much for replying and for your advice. Unfortunately my husband has deteriorated and the end is very near but I will definitely take your advice and find someone i can talk to because i must admit, I am afraid that depression will engulf me and my children, grown up though they are, need me now as much as i need them. There is only the 3of us here and our son is taking it particularly hard already too. He has had his antidepressant dose increased again. Fortunately both my children are already seeing counsellors and i can see just from getting your reply how good it is to have someone who understands to talk to.

Thank you again x