Loss of my son

Losing a child
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My son was 40 when he was diagnosed with testicular cancer in June 2021, supposedly one of the “better” cancers. At first his chemotherapy went well but then by January things got bad. His cancer had already metastasised to his spine and lungs when he was diagnosed, but he reacted well to his first chemo protocol. But then the tumours in his lungs grew, several operations, more chemo, then eventually 50 days at the university hospital in Lausanne for high density chemo and an autologous stem cell transplant. Treatment cooked up by the devil himself. He was put in an artificial coma for a week and then slowly but surely improved. After spending 6 weeks at his place or at ours (he was single), he was set for an operation to remove the remaining tumours but no - scans showed they had grown again at an alarming speed. Eventually they spread to his brain and only ten days ago he died.

I just do not know how to cope with this. I am prostrate with grief. I can’t get out of bed now that the celebration of his life is over. He was a very much loved, creative extremely funny young man, quite a figure in our community, so hundreds and hundreds of people attended his funeral. The organisation of this kept my other son and I busy but once it was over, the grief has been overwhelming. I also have so many regrets and feel so much guilt, most of which is probably not right. In order to get himself through his cancer journey, he and a close friend from his film school days created a video blog called Having a Ball with Joseph Barnes - which was absolutely hilarious and followed by thousands of people. But none of that matters at the moment. I miss him so much I feel like I’ve been run over by an 17-wheeler.

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Hi
I am so very sorry to hear you have lost your much loved son.
I have just went through the first anniversary of my son’s death. He was 29 and had bone cancer which spread thought out his body.
Allow yourself time to lie in bed and cry, have days where you scream loudly and rage at the world. It’s acceptable, it’s expected but the most important thing is that in between it all and even if it is just a pretence, drag yourself out of bed or pick yourself off the floor and have a shower, make a meal and do something that made you happy. My happy place is my garden and my chickens so just pruning flowers and pulling weeds helped me, even when I just wanted to stay in a dark room. Take one day at a time and if that day is a crying or screaming day then so be it. Don’t let people dictate what you should do but don’t push them away either .
There are no rules or guidance for how to deal with the loss of a child. Just remember every so often to stand up, get washed and dressed and try to have what is perceived as a normal day. You are still at the very early stages of your grief, it is raw and all consuming. Allow yourself this time.
I think guilt is a natural element to grief, my son was in hospital having chemotherapy and he was meant to come home on the Sunday. Instead we got a call to say we needed to get to the hospital asap.
I knew as soon as I walked in the room he didn’t have long left
A young doctor came round and waffled on about what they could offer, I new she was eluding to final pain relief but she never actually said outright.
I followed her out of the room and spoke to her. I asked her, are you saying he will die today, because if you are he doesn’t understand this by what you have said. .
She squirmed a lot and it must have been awful for her as I think being a jr doc she had been put on call on the Sunday. She said reluctantly, yes. It was like looking at a lost scared child and new she would have been no further use to Daniel let alone explain to him the gravity of the situation.
I went back in the room, sat on his bed, held his hands and explained that this was it we had ran out of options and his body was not able to carry on. He passed away later that day.
I play that scene over and over and feel so guilty, should I have told him, did I say the right words, the list goes on. You could drowned yourself in guilt but you can’t change what happened.
I’m sorry my words may not be as comforting as I would like to have given but know those days you can get up, washed and dressed get more frequent than the days of crying and screaming. The pain has never left me a year on and I still scream and rage, but then I dry my face and stand up straight as that’s what everyone expects of you.
Sending my love and thoughts. xx

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Hi Daniel’s Mom (or dad),

Thank you for your comforting words. I’m very sorry for your loss. Cancer is diabolical and it doesn’t even spare our young people.

I am still so very angry that it took my son Joey! I am also in awe of how he dealt with it over his 16 month ‘journey’ as he called it - always with hope and humour. As I mentioned before, he chronicled his experience in a YouTube podcast, Having a Ball (yes, his humour is quite apparent there already, in the title), but there were also of course plenty of dark moments. I have thousands and thousands of text messages from him from the past years, long before his cancer days - and scrolling through them this past week I saw he’d sent me a message in March 2020, cancelling a dinner at our home because he said he’d had backache and nausea for several days. He thought it might have been food poisoning.

Only 4 months before, I had had backache and nausea myself and after a couple of days I went to my GP and he immediately diagnosed gallstones, sent me for a quick scan and out came my gallbladder! No problemo, didn’t even spend a night in hospital. So WHY did I not encourage him to go to the doctor? Being young and in good health, he didn’t have a GP (we don’t in Switzerland unless you’re ill), so why didn’t I make him go to mine??? I have always known my son inside out and I knew he was a procrastinator, so why didn’t I? The extent to which his testicular cancer had metastisized means that it is quite possible he already had it then, more than a year before his diagnosis. If I’d been more responsible, it’s quite possible my son would be alive today! After all, testicular cancer has a 97% chance of recovery.

My elder son, who’s been an absolute rock for me (to make maters worse, my quite-a-bit-older husband had a stroke this past year and he’s taken our son’s death extremely hard too), said that I have nothing to blame myself for. After all, Joey was a man and his health was his responsibility. I know that, but the guilt doesn’t go away.

We have always been global travellers and I’d miss Joey so much after only a 3-4 week absence. He was a joy to be around, as I’m very sure your son Daniel was too, but now knowing that I will never ever see him again just makes we want to scream all the time. It is unbearable. True, the edges of my grief are all still very raw. Today two weeks ago he was still able to enjoy a ‘garden party’ in the little park behind the hospital, attached to his IV stand with enough Fentanyl to kill a horse. This was a garden party that went on for 5 days, with his many friends bringing snacks and wine and beer (not for Joey, of course). I have a beautiful phone of him, with my next to his wheelchair, which I will treasure forever.

But then the next day he was to start radiotherapy, not to ‘treat’ anything, as we/he had already been told there was no treatment possible anymore, but to cauterize the tumours that had gone into the nerves. It was supposed to buy him a little more time - a few weeks? - before he was to go to a beautiful hospice near us. He had resigned himself to it, a wonderful private place where family and friends could come 24/7, where he could still tick off a few things from his bucket list.

But it was not to be. The next day he developed a kind of blockage from the many drugs he was on and they had to sedate him in order to do a scan. The doctors warned us that he might not ‘wake’ up, that he might just let go. They said there was no medical reason for this as he was young with a strong heart and good kidneys, but his treatment over the past 16 months had been such - operations, numerous chemo protocols, a stem cell transplant - the he’d had enough. Over these past months whenever the suffering really got too much, he’d repeat his mantra over and over: I can’t take this anymore, I can’t take the anymore.

And so after spending the night in his room with him, my on the bed next to him, my husband and elder son on long chairs, we noticed his breathing had got raspy. Nurses and doctors came but they said there was nothing more the could do. We all held him and told him it as OK to go, even though it broke our hearts. Minutes later he died. The doctors told us it was very likely he had heard us.

Ouf. I long story, and I apologise. It is all I can think about. I cannot function. I can’t leave my bed. I’ve worn his pyjamas for the past three days, but your advice of getting out of bed and taking a shower is one I shall take tomorrow. How does one ever ever get over such a loss? I’m prepared to lose my husband of 44 years - he’s in his early 80s - but not my child.

Thank you so much for listening - and ‘bon courage’ as we say in French here, to you, Daniel’s Mom

Annemarie

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Joey will never be just a man in your mind, he will be your baby, that small child who you held tight and comforted when he needed you. This is why a mother’s love has no depth and why we beat ourselves up so much when we can’t take away their fear and pain.
Could have, should have, would have, is great in hindsight but who expects their child to be diagnosed with such a horrible disease. You could not have prevented it and even if you had told him to see a doctor he would have told you to stop worrying so much.
He sounds a courageous young man who knew his own mind and a fighter to the end. Daniels always took everything with humour, we both said if you don’t laugh you’ll cry. His final day he was struggling to breathe and they had given him enough painkillers to tranquilize an elephant but he was still consious and as his breathing got worse and as he struggled to get air , he looked at me and said " mum help" I can’t describe the absolute pain and helplessness I felt.
I went to the nurses station and lost my cool about the pain and fear he was in, they had the audacity to tell me he wouldn’t remember it due to what they have given him. I stood there in disbelief. What did it matter if he remembered or not he wasn’t going to live long enough to know.
You have NOTHING to blame yourself for.
We can all beat ourselves up, let’s face it, all we have now is time to overthink and replay situations and conversations.
I am sorry your husband is so unwell, but there are things we resign ourselves to, losing a mother, brother or husband is one of them, that’s life, but our children should not be included in this list.
I wish I was near you,so I could look you in the eyes and hold your hands and tell you, you are not at at fault.
I am by no means out the otherside, if there is anotherside. I’m crying as I type, but if one thing I can bring from all this mess and pain is to offer you a ear and an understanding shoulder then Daniel would be proud.
Please feel free to message me Annemarie, I may not have the answers but I certainly know the intense pain you are living through.xx

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Please do not blame yourself for anything. We have tried to take away the pain of our children since they were born, but seeing them dying we can do so little and feel so guilty. Even if your son had seen a doctor earlier it would probably not have helped. My son was born with a life limiting disease and was under the care of specialists all his life. In the end they missed his final cancer spread, ignored his pain and he died within 2 months of the final diagnosis of the cancer spread. He was discharged and told there was nothing wrong with him just a week before the growth that killed him was found. Doctors are only too fallible.

Do whatever he asked you to do and honour his memory. Much love. Mary Mouser

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