I don’t know how to write this but I suppose I should explain that I lost my beloved husband on 16th September 2022, just two days after our 48th wedding anniversary.
In June 2021 he was diagnosed with asbestos related lung cancer, inoperable and incurable. He was treated with chemotherapy and immunotherapy the aim was to give him as much time as possible. The oncologist was hopeful of several years as Barry was in general good health despite the awful diagnosis. Throughout his treatment he remained relatively well, some minor side effects but friends and family were amazed at how well he was and how he kept going as normal.
Jump forward to July 2022 and the devastating news that his latest CT scan had identified rapid growth of the tumours and massive spread to the peritoneal and omental lining. We were told “time was short” and there were no treatments which would be of benefit. But on the surface little changed, he still remained well, more fatigued and his appetite reduced but still looked well for a man on palliative/end of life care.
In September he began having increased abdominal discomfort and bowel problems which led to him being admitted to hospital. He was put on a syringe driver, saline drip, oxygen and was nil by mouth but incredibly still remained cheerful, independent (bathroom) and we all expected him home and none of the hospital staff intimated anything different.
September 16th we visited as usual in the afternoon and he entertained us with his jokes and chat, we left at 5.00 pm saying “See you tomorrow”!!!
At 6.30 my phone rang and the nurse told me that Barry had been to the bathroom, become dizzy and after being taken back to bed was having a panic attack. Her next words are now impossible for me to forget… she said “He’s asking for you to come back, he keeps saying he thinks he’s dying… but it’s just a panic attack”. I got to the hospital 25 minutes later to be met by the nurse who said “I’m sorry he’s gone”.
I can’t get her words out of my head, I cry constantly thinking of him scared, wanting me and I want to know what happened in those 25 minutes. All the hospital have told me is that they were shocked and didnt expect him to die so suddenly.
His death had to be referred to the coroner, a post mortem carried out and although we were allowed to have his funeral I still don’t know what happened or the exact cause of death. I feel I can’t grieve properly for him because my thoughts are all around him being scared and that I wasn’t there for him when he wanted me.
I know that getting the answers won’t change what happened but how can I find any kind of comfort knowing he wasnt having a panic attack but was dying? Why didn’t the nurses/doctors realise?
Dear @Jan71
I’m so sorry to hear about the loss of your husband and for what you have have gone through. It might be helpful if you have not done so already to book an appointment with the Consultant who treated your husband and to go through everything that has happened.
Sometimes and unexpectedly patients can all of a sudden deteriorate without warning which can take the nurses and doctors by surprise. Hopefully the post mortem will also give you some answers.
I am sure someone will be along to offer their support, but in the mean time I would to share a few resources which may be of help and support to you.
- Grief Guide self-help platform which has information, resources and advice to help you through your grief
- Grief Coach text service, which sends you personalised text support via SMS
- Our free Online Bereavement Counselling which is held via video chat
- Our Bereavement Information pages which can walk you through what you are going through
Please continue to reach out any time, you are not alone, we are all here for you.
Take care.
Pepsi
Thank you for your reply. I have already spoken to the Consultant who hadn’t actually seen my husband during the four days he was in hospital and he was unable to provide any clarity. I accept that things can change very suddenly but I really wish the nurse who rang me had not told me that my husband was saying " I think I’m dying" and then her saying “But he’s only having a panic attack”. I did ask that going forward that staff would consider more carefully what they say to family especially when it concerns a patient who is terminally ill, on palliative care and who may well die suddenly. I feel so sad and I guess a bit angry that what turned out to be possibly his last words were passed on to me without thought. I try not to dwell on this but it’s so so difficult to think that he was aware that he was dying and wanted me to be there.
Sorry for your loss and what a dreadful experience you’ve had. I dont think nurses really give a stuff we’re just a number to them after all there only really there for the money. I will never forgive them for the way my husband was treated . Put in a complaint and tell them you need answers i know nothing will bring back our loved ones but people need to make a stand else it will keep on happening. I would ask how they would feel if it was there loved one laying there. If they’re got no compassion dont be a nurse. Sorry if this sounds harsh but i feel very strongly about the NHS
@Jan71
How heart wrenching for you. I can see why you are being haunted by this but remember that your husband knew you were on your way so that will have helped him I’m sure. You responded to the call and the nurse would have let him know she had spoken to you. Knowing you were on your way would have given him some of the comfort he needed, even if not as much as you being by his side.
Sending you my love. xxx
My dear @Jan71 - this is so, so, so hard. You and Barry had such beautiful love for each other and that love endures all things. I am pretty sure he would have known you were on your way and that would have given him comfort in those minutes and seconds. This comes with load of love, my friend, V x
Hi Jan.
After Steve died from CMML, he had a brain haemorrhage I wrote a letter of complaint to the hospital, because I felt that more could have been done before the haemorrhage. But after speaking to the consultant at a meeting after you begin to realise that the medical staff do not know everything. The doctor thought that Steve would be coming home but the leukaemia kicked in and he got infection after Infection. The consultant said to me in a moment of real honesty, “ I come to work every day to do my best”. I realised then that they are not gods, they just do their best with the knowledge they have, anger is part of the grieving process, I’m not angry anymore. I still feel desperately sad that he is gone. It doesn’t get better, just different,