Recently bereaved

Dear Anneh1981,

I am so sorry for the loss of your lovely husband. And I am so glad you have found this group as you will find help and support here from people who find themselves in a similar situation to your own.

My husband died on 15th May of last year after an almost 15-year long battle with advanced Prostate Cancer. At first - and for the first 10 years in fact - it had only spread to his bones. But it then spread to more of his bones and lympth nodes and, in summer of 2017, the doctors found that it had spread to his liver. He was on Chemotherapy from July 2017 till March 2018. He was unable to continue the therapy because of flew and pneumonia. How he still fought for another six weeks I don't know. By then he had almost no quality of life left. And today I am sure he knew that he was going to die soon. And he was tired of living with all this pain and all this suffering. And, like you say, it was heart-breaking having to let him go (my husband was only 68), but it was so good to know that there was no more pain and no more suffering for him. Our men were very breave in their fight and the time had come for their bodies to say "It is enough".

What I have learned over the past 13 months is that grief is a very individual process and we are all going through it differently. I have also learned that the process is not a linear one; like we don't usually feel gradually better but some days are better and others are worse and some days can be really bad. But what I have also learned is that, over time, the grief will become easier to bear; the pain never subsides but we learn to live with it somehow and move forward in our own lives as best we can without our lovely men by our side.

I think it is important to have family and friends around you, people wo are willing to listen, to spend time with you, to accompany you on your journey and who give you the chance to see how they are grieving and who allow you to do it together with them. There is a lot of comfort in that.

It is only one month for you, everything so fresh and raw. Please know that we are always here for you whenever you feel like you want to post.

Love, Mel.

Dear Anneh1981

So sorry to hear about your loss. Youve had a very rushed and hard time. I am sure you will have great comfort from your family. I hope you find support and understanding from this group. Take care of yourself it's little steps and getting through now not worrying about too far ahead.

Dear Mel

Thank you for your reply. 15 years, that must have been such a roller coaster for you both. When John was first diagnosed the cancer hadn't spread to the bones, but it had gone into the lymph nodes in the pelvic area and the neck of the bladder and was affecting the kidney so he had to have a stent fitted early on into the right kidney, and then later on into the left one. He was on Prostap and then chemo, which worked very well and brought the PSA right down for a while, but then it started to rise again and he had various drugs, none of which worked.Started a second course of chemo last August but after 4 cycles it was obvious it wasn't working and was making him feel worse, so that stopped just before Christmas and we had the terminal diagnosis in January. He then went onto a clinical trial but that didn't help either. Really, while there were some bad days, he was able to have a reasonable quality of life over the last 2.5 years, until around March this year, when the scans showed further progression into the lymph nodes and into the liver. The lymphodema in the legs became so bad he could hardly walk, and the swelling moved further up, he had a catheter for the last few weeks, something he'd dreaded but at least it wasn't long term. Like your husband, he had no quality of life for the final few weeks, was so weak that by the end he had to be hoist lifted and couldn't make it to our son's wedding, although he was able to watch it in the hospice on Skype. 

It was heartbreaking to see someone who had so much energy and vitality deteriorate like that and I also felt guilty that I hadn't understood how bad it was getting, because he was always so stoic, and I was so tired and stressed that I wasn't always as helpful and tolerant as I should have been. I'm sure we all have feelings like that after a loved one has died, but I think he knew how much I loved him. At the end, my son and daughter and I sat by his bed while his breathing got worse, just waiting for him to die, he wasn't conscious but the nurses told us he knew we were there.

You're right about every day being different. At the moment I don't feel like I have any good days, but some days are less bad than others. Yesterday a friend helped me to clear out his wardrobe, that was really hard. I try to keep busy, and there is a great deal to sort out, although he was incredibly well organised and while he was still well enough he'd worked hard to try and make things easier for me. I just can't imagine this pain ever easing, and while I do have support from family and friends, my children don't live nearby, and we had only been living here 4 years - spent the first 2 refurbishing the house, then trying to do things together while John was still well enough, so I hadn't really put much effort into making friends and joining things.

Sorry to go on, I must sound very pathetic! 

Anne 

Anne

I agree with everything Mel has said. Its just so hard trying to get your head round all that has happened.

I lost my husband in January he was in the Chelsea Marsden in the CCU from December to January. It was his birthday last week and our wedding anniversary so I went to Kew Gardens with his sister and then the family had his lovely roast dinner in the evening. 

Not having his presence around the house really get to me I do talk to him. His daughter and her 6 year old son have moved in so that a distraction but when they are not here then it hits me. I see a private counsellor which is a way for me to vent all my feelings.

Nothing is ever going to be the same for all of us, but knowing that this forum is here does make a difference.

Keep on posting, I did in the beginning but I now just dip in and out,

Lesley xx

I'm so sorry for your loss. I talk to my husband too but it's a very one sided conversation isn't it! I found his 'journal' today - daily notes that he made over the last 4 months, since the terminal diagnosis in January. We knew it was incurable right from the start but the first chemo and some of the meds did help, it was just a matter of time though. Even when you know that, it's still so hard, nothing can really prepare you for the end. He was a very organised and practical person and made copious notes, but I hadn't realised till I started reading them today just how bad he was feeling some days, because he was so brave and stoic. Now I just feel awful that I didn't realise....and I sometimes got cross with him because I was so tired and stressed, and I wanted him to eat, and drink, but in the last weeks he was so tired and all he wanted to do was sleep. He loved me so much and never wanted to cause me any worry or upset. I hope he knew how much I loved him.

Hi Anneh1981,

I really understand and hear your pain.

It must have been very difficult to find and read his notes and to feel that sometimes you may not have been aware of how bad he was actually feeling.

My husband was not a very organised person. He didn't write any notes and he didn't leave me a note or letter.

But I do know the painful feeling and guilt that I may not have always known how he felt and particularly that I was sometimes cross with my husband because I wanted him to drink or eat or do whatever when all he wanted (and was able to do) was to rest and sleep.

I think the important thing is to acknowledge that, yes, perhaps we were sometimes cross or short with them or impatient or whatever, but that this happened because we were worried, desperate, tired and exhausted as the result of a really difficult situation; we didn't mean to be harsh or critical or short with them.

I remember on the last day my husband was at home and he was actually already septic (something which I didn't know at the time) and I handed him a glass of water and said, "Please drink. You have to drink." He put the glass down on the table. One day later, when we were in hospital, they gave me a glass with water for him and a straw and I gave him water and he drank it. This always made me feel: Why didn't I think of that at home? If I had given him the water with a straw, then he would have been able to drink it? Why didn't I think of that? Why didn't I see it... But I didn't think of it and I couldn't see it because I was fighting for my husband's life as much as he was fighting to stay alive. When he put the glass down, I screamed at him, "For God's sake, can you not help me and at least drink this glass of water?! Be a little helpful!" You can't imagine - or I think actually you can - how much I used to beat myself up over it. I did this until I realised: For one thing, what's done is done and there is no way I can change this now. And, also, I too was in a desperate situation. That we sometimes lost it in those situations is normal. We did all we could, we really did.

I am sure your husband knew how much you loved him and I am sure you let him know how much you loved him. And if he was here now, I am sure he would say, "Don't worry, I know that it was very hard on both of us. You did your best. And so did I. And I love you too."

In the 13 months since Paul's death, my mind has been very inventive when it comes to situations where perhaps I could have done something differently or better, where I could have doen this or shouldn't have done that, I sometimes cried myself to sleep thinking what a horrible person I must have been. But over time I realised that I wasn't. This group has helped me to see this. Because from reading posts here I know that we have all lost it at some point, that we all did things we afterwards thought were wrong or we could have done better. It is a part of grief this feeling "if only...".

Don't be hard on yourself.

Love, Mel.

Dear Mel

Thank you so much for your very helpful reply. Much of what you said is so like my own experience during John's last few months. When he wasn't able to get downstairs anymore I spent a lot of time going up and downstairs to check on him, and try to get him to drink, or eat. And on one occasion my lovely mild mannered husband, who had never said a cross word to me in all the time I knew him (it was almost impossible  to argue with him, which I sometimes found frustrating!) told me to go away and leave him alone. So I went downstairs and cried, then I told him I was going out for a walk (it was 10pm), and I walked round the block. When I came back he was sitting on the stairs, he had tried to come after me but only made it half way down and I had to help him back upstairs. I felt so guilty. Like you Mel I shouted at him sometimes, I even said things like 'Can't you just make a  bit more effort?', and I know now how hard he tried and how very difficult it was for him. But you're absolutely right, he really wouldn't  have wanted me to hate myself and cry myself to sleep every night, because he loved me so much and if I was upset he was too. He only ever wanted me to be happy. That makes him sound like a saint and of course he wasn't, like all of us he had his faults but he really was the kindest and most unselfish person I've ever known.

At the moment I'm haunted by how ill he was in the last months, and especially the last few weeks. It wasn't him, and the Macmillan counsellor told me that I'd started the grieving process several months before he died.  It's still very early days, and I just hope that the pain and the grief will ease with time and like you I'll be able to start moving forward, with all the happy memories, because I know that's what he wanted me and our two lovely children to do.

Thank you so much for your support.

Anne

Hi Anne, I don't have the answer yet but my wonderful wife Margi lost her battle with cancer last October after we had 42 years together. I can only tell you that some days are ok and some days you feel a down.That's normal. I still have a little cry each day and I never know what's going to start it.

After Margi died I felt helpless and whilst keeping it together for my grown up children and our families I still feel the lonliness when left to my own company. BUT 8 months on I'm beginning to find my "new normal" and now my feelings are changing a little bit from the hurt of losing Margi to remembering the happy times we had together and appreciating how lucky I was to have her in my life (Another blub starting now- I told you we don't know when it's coming).

My heart goes out to you on the journey you are now on and hopefully you will get some strength from the wonderful people who post on this group-I have.

No one can tell you how to grieve and I encourage you to listen to your own inner voice over other peoples opinions and do what feels right for you. Not everyday will be ok but the bad days from what I've experienced and see on this group do start to become less frequent. The only thing I personally have to look out for is that invariably when I've had a good day they don't, at this stage, usually come in twos.

big hugs

IanB

Hello Ian, thank you, that's really helpful. It's good that you're finding it a little easier now.  It's just over 5 weeks since John died and everyone says 'it's early days', which of course it is and I don't  really expect to feel better any time soon  but it helps to know that others i the same situation are finding glimmers of light at the end of the tunnel. One day at a time. Life is full of clichés and platitudes at the moment, people mean well but don't know what to say do they? I keep crying too. Randomly, sometimes just driving to the supermarket or walking to the village. Do you have friends to support you? I ask because while I don't have many locally as we hadn't been living in this area for long, generally I think perhaps it's easier for women as they're more likely to have close friends. You may have loads of friends of course, but John didn't, he wasn't anti-social but he wasn't good at 'small talk' and wasn't really into sports or drinking, which can  be a disadvantage for men! We went out together or as a  couple with other couples and if I wasn't here he was happy on his own just pottering about, but of course he knew I was coming back. He always said he thought I'd cope a lot better without him than he would without me, but I'm not sure about that, and we'll never know now! 

All the best

Anne

Hi Anne,

Oh I can really relate to the experience when you went for the walk and came back to find your husband half way down the stairs.

On the last morning at home, when I was getting Paul ready to go into hospital, he was too weak to dress himself, in fact, looking back I think he was drifting in and out of consciousness back then and only half aware of what was going on and also far too weak to engage in any conversation. This was particularly difficult for me as I have a vision impairment, which means in my case almost no vision at all, and so I was unable to see his facial expression or see what he was doing. So I got him dressed and then helped him downstairs and told him that he needed to stay there while I got myself ready. I went upstairs. Then I heard him trying to come up the stairs again. I was so desperate to keep him down there as I had already felt it difficult to bring him down the first time around. So I went downstairs saying very impatiently or maybe (and possibly) even sharply, "Paul, stay downstairs! I will be down with you in a second!" When I reached the bottom of the stairs, he had collapsed from the effort and was lying on the floor, with his head turned to the side, as if he was lying in bed. I can't tell you how sorry I felt for him then, it was so heart-breaking, all I wanted to do was to take him into my arms and hold him and protect him and keep him safe. But I had to keep going, I had to get him ready, I had to get myself ready, and I knew that we needed to get into hospital quick. So I helped him to sit up and to sit on the couch.

The truth is that I had to be sharp with Paul that morning because he didn't hear me otherwise. He was already dying. He ws very far away from me at times, like already in another world, and the only way I could get through to him was like this. But it broke my heart because my Paul, too, was the kindest and gentlest person you could meet and he hated sharpness and he hated shoting and I felt so so very bad for having to be like that with him.

The interesting thing is: When we were in hospital and when I knew that nurses and doctors were around us, I felt somehow safer and more able to deal with the situation. I was then able to think clearly, give him something to drink, butter a cheese cracker for him, hold his hand, etc. But at home it had just become too much for me.

You say in your message that you had begun to grieve for John and a future you wouldn't have a long time before he died. It was the same for me. I think I have been grieving for much longer than just a year. Because we knew what was coming. We could see it in our men each and every day. And we knew that there was nothing to reverse the situation.

I was living in a lot of denial though. And, looking back, I think that was the only way I was able to keep going. Two days before Paul passed away, he got very ill and I think then even I could no longer deny that it was happening.

I think those thoughts will go around in your mind for a while. This is how it is for most of us I think. But one day you will come to accept that there is nothing more you could have done and you will know that the love between you two was not diminished by what was happening to you both but that it was just such a very hard time.

Your John sounds like a lovely man. You will always keep him in your heart. And one day the lovely memories will be stronger than the ones of the months when he was so ill. It will take some time though.

Love, Mel.