If only time would stop

My husband and best friend died last month, of a rare and vicious brain tumour. With every passing moment, he feels further away. I have so many regrets about the way he died, that no treatment beyond steroids was ever attempted.
It was all so sudden. He began to have trouble swallowing, then his left leg was weak, he walked into hospital and was discharged three weeks later unable to move from his bed.
At least he was at home. We’d had a battle to get him home and not into a care home.
Nobody told me what to expect. They didn’t bother to tell me he was terminal before discharge, they just sent him off in an ambulance with a huge bag of drugs, another of incontinence pads.
I knew that the tumour would kill him, but not how quickly.
My husband was meticulous in his personal habits, he would have been appalled at the pads. I hid them away and did my best. We had a carer four times a day for half an hour a time - only one was competent, the others more or less useless. The district nurses came and set up a syringe driver, none of the GPs came.
My husband could hardly swallow, I had to syringe fluids into his mouth millilitre by millilitre. he’d ask for coffee to be unable to drink it. He had bad thrush from the steroids. By the time we had medicines for that, he was unable to swallow at all, so the meds were useless.
I’d made his favourite foods which he couldn’t eat.
It was a nightmare that plays again and again in my mind.
I managed to wriggle onto his hospital bed for a cuddle, we both began to cry. I should have stayed there, but I got up. I didn’t want to upset him. I was terrified of hurting him.
I told him I loved him again and again.
I hope he knows how much.
I would give anything to be able to talk to him again, hear his voice, snuggle up against him.
I feel that, with every passing moment, we are further apart.

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Hello Christie, I am so sorry for the loss of your lovely husband and best friend. It’s lovely when your loved one is also your best friend but all the harder to be parted from them. I cannot find appropriate words to commiserate with your ordeal. Even if I could they would never be adequate or change anything for you. I was so sad reading your sequence of events. I can only imagine how hard it was for you both and especially you now that you are left behind. If I could suggest something to help you I would but unfortunately you have to find the best way to survive by yourself although counselling might be of help.
You come across as very caring, so please take care of yourself.
Warm wishes, AL x

Hi Christie,
I am so sorry. That must have been a terrible time for you both. You said you hoped he knew how much you loved him. Of course he did. He knew it in life and he would have known it to the end. The way you cared for him shows how much you loved him too, so don’t ever doubt it. Physically, obviously, you are apart but mentally, no. You and he are one.
I hope things ease for you. I am four months into my life without my wonderful husband. My one regret is that I wasn’t allowed to be in the hospital when he died because of Covid. However, I have no doubt that he knew I adored him and I am pretty sure your husband knew the strength of your Iove for him too.
Hugs, Ann xxx

Hi Christie
I’m so sorry, I feel and understand your pain xx

@ChristieI cant imagine your pain but wait a moment I can. We have both gone through the unbelievable pain of losing our life long loves. Me to a sudden catastrophic heart attack you to a horrific experience. I can only say I am sending you love and a big hug. It’s not much but the best I can do :butterfly::broken_heart:

Thanks for your kind words, AL. It’s still so raw, I’m counting the days and hating time for passing. I don’t think I’ve really accepted it yet. COVID has really hurt the NHS badly - I doubt this would have happened a year ago. I’m angry at the tumour and also at the lack of information and support. I hope to have counselling soon - when I asked the counsellor told me I was still in shock and I should wait for a month or two. It helps to write it down and know there are kind people out there.

That must have been awful, AnnR. At least I managed to see my husband in hospital twice a week and then I had him at home after he was discharged.
I can’t imagine how I would have felt if I hadn’t had that. Do you hate time passing like me? It feels cruel, but as someone said, grief is the price we pay for love.
Your kind words reassured me. Thank you. Cxxx

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Thank you Dean. The pain is terrible, but I don’t regret a moment of the time I spent with my love,

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The death of a loved one is always horrible. How it happens is incidental. Neither of us had time to take in the diagnosis - he died just three weeks later. I am so sorry about your husband. There are simply no words. But here is a virtual hug. Take care, C xxx

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You are very welcome Christie. This is a dreadful time for all of us. Perhaps I should clarify why I wasn’t there when my husband died. It wasn’t the hospital’s fault - they were excellent. Tony was taken into hospital on a Sunday after having complained of a headache and upset stomach. He had fallen asleep at home, but I realised that his sleep was not normal, but a coma, and called an ambulance. When he was admitted, I stayed with him all that night and all day Monday. Late Monday night, the hospital said I should go home and get some sleep because I was obviously exhausted. I did, and he died a few hours later at around 2 am. I think he waited until I was safely home, because he would have hated me to see him die. He only wanted the best for me. I was very lucky to have 57 years with him, 54years married.
Hugs, Ann x

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Hi Christie, I’m glad you are considering counselling and your counsellor is quite right about being too early. Everyone is different in grief but I tried counselling 4 months in and decided it was too early. If necessary I may try it at a later date but as I say, everyone is different.
It does help to write down your feelings and continuing on this site may give you a small degree of comfort. I hope it does help you.
Take care, AL x

Aww Christie, I am so very sorry for the tragic loss of your husband and best friend, I lost my fiancé in April he was also my best friend and I couldn’t wait to marry him but it wasn’t meant to be and I blame myself a lot every day, he went out a walk with the dog and he collapsed and died in the street, I wish I had gone out with him, did I tell him I loved before he went, it was the worst day of my life, have so many questions and I am sure you do as well, I cry every day the pain just gets too much sometimes but I am glad I found here and I hope you find so peace here too. Take care xx

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I watched my sister die of a brain tumour it too was very fast. She was operated on but it still took her life. It’s a devestateing condition. We also didn’t fully understand how it would take her. It took everything.
I’m so sorry for the loss of you’re husband. My sister passed in April.

Honeybee, I understand. Please don’t blame yourself. I don’t know why these things happen. It’s shaken my faith in God. Life can be so very cruel. Yesterday was a beautiful day and I imagined for a moment I saw my loved one in the clouds. I almost felt his presence. It’s so hard. Just take it a moment at a time. Cxxx

I’m so sorry about your sister. These brain tumours are vicious and unpredictable. My husband seemed to be fading in front of my eyes. Nobody expected him to go as quickly as he did. There’s just no words. Sending hugs Cxxx

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Dear Christie, so sad to read your post. I lost my husband in May and the memories and images from those last days are hard to deal with. Try to remember all the lovely, loving and happy times you had together. Nothing will take away the pain. Sending virtual hugs.

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It’s really tough, isn’t it? I was exhausted and now I’m regretting everything I did or didn’t do. The images will stay in my mind forever. I tried so hard. I do remember the happy times, but the memories are tinged with sadness now because there will be no more. Thanks for you kind thoughts & returning your virtual hugs.

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Hello Christie
You sound just like me…I to lost my husband in June this year to glioblastoma grade lV brain tumour.
To think he was a strong fit healthy man and so handsome…it’s unbelievable what he and we endured…he was the best husband dad and grandad …we all loved him so very much.David was 75 yrs young … people couldn’t believe he was his age …I think of him every minute of the day and night…cry most days and nights…I talk to him and tell him how much I love and miss him and tell him he should be here with me… life is so very cruel isn’t it :pensive: I to asked for David to come home… he came home 5th June and he passed away 23rd June .My stomach is always churning … feeling sick. David didn’t open his eyes for over 10 days or eat or drink…he also was on syringe driver heavily sedated.Just waiting for that dreadful moment :sleepy:…he must of lost at least 3 stone in weight. I will love him till the day I die :broken_heart:

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I’m so sorry, Deborah. There are memories of my love everywhere in this house, I’m sure it’s the same for you. It’s so hard watching someone you love so much just fading away. I had a though today, what if I had died? I wouldn’t want my beloved to mourn me forever, I would want him to find peace and happiness somehow somewhere. That thought helped me for a while, but it is slipping now. Take good care of yourself and know that someone at the other end of the country is thinking of you. Cxxx

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You too Christie …I’ve just been outside cleaning the guttering out … one of the many jobs David would do…yes memories everywhere he too…very emotional…im sat in his chair writing this…God I miss him so much :sleepy: we are in this for the long haul… very best wishes Debbie XX

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