My husband wants to fight but I don’t want him to

Susanne, 64, couldn’t believe her ears when the doctor said her husband had brain tumour. To make things worse, it’s

Susanne, 64, couldn’t believe her ears when the doctor said her husband had brain tumour. To make things worse, it’s the type which cannot be operated on to be removed. That meant that at 73, David had no choice but to go through chemotherapy.

“My heart sank. I never thought this would happen to us. Dave had never smoked in his life and we’ve always eaten healthy too,” said Susanne.

David went through 22 cycles of chemo and was actually really calm about it. He attended all the check ups and sat through all the chemo sessions with his iPad by his side like a true champ. And beside him was Susanne, who despite what was happening, was keeping a steady head over her shoulders. Because David’s cancer was on his brain stem, the chemo had an effect on his behaviour and for some reason, his stubbornness was amplified.

“Imagine 22 chemo cycles, more than 40 check ups and God knows how many blood tests. Poor David and he rarely listened to all our advice. He couldn’t because it was not him, it was his cancer taking over,” said Susanne.

David completed the chemo program, and his scans showed that his lesions were disappearing. “You cannot imagine how relieved I felt. I thought, “Oh, finally we get our lives back”. And Dave was already wearing out from all that chemo he was doing,” confessed Susanne.

But four months after that good news, David’s behaviour started changing again. He became more sensitive, weepy and was getting more tired than usual. An MRI confirmed their biggest fear – the cancer came back.

The family got together to discuss the next step and when David said that he wanted to continue the fight, everyone was behind him, supporting his decision. David went in for another treatment program and this time it was radiotherapy. Again, the treatment started to deteriorate certain parts of his brain, affecting his behaviour and this time his memory.

“It’s like I’ve lost Dave. He looks like the man I know but the way he behaves just tells me that he is not fully here,” said Susanne.

The more David went for his radiotherapy, the more parts of him vanished. He managed to finish the radiotherapy and once again the lesions went away. He was off the medication and Susanne finally felt like she was getting some of David back although some parts of him “dissolved” with the treatment.

The third blow came just a few months ago where a new MRI scan showed one lesion had come back.

“I was just speechless. All I was thinking about was Dave having to do it all over again and can he really?” asked Susanne. She gathered the kids and they had another round of discussions about the treatments and how to approach it for the third time. The kids felt that their father should be given the choice to decide what he wanted to to. After all, it is his life and no one can take away the option of treatment if that was what he wanted.

“Dave said he wanted to fight again but deep down in my heart, I don’t want him to,” confessed Susanne.

“Not because I don’t love him, not because I am tired of all the hospital visits. But because every time he does a new treatment I lose more of him,” cried Susanne.

“He’s not young anymore and neither am I,”

“This little time that we have left, I want to spend it with him and not that man on medication whom I don’t recognise. I want Dave’s last moments with our family to involve Dave and that can only happen if he is off the medication where his mind can return,” said Susanne.

“I don’t know what to do. Part of me wants him to continue fighting as long as he can, part of me wants him to spend his last moments as himself,” confessed Susanne.

“We’ll take it one step at a time. As for now, we will embrace each day with hope and we’ll see where that takes us,” she said.

Do you know anyone in a similar situation?

  1. ShonaRobyn Eisenberg  

    My heart goes out to you – brain cancer sucks. The impact of relentless chemo and radiotherapy sucks as a subtle (and NOT so subtle) dementia robs the quality of life from the patient and their partner/family. Health professionals are not going to acknowledge this because they do not have to live with them – and they have to be seen to saving lives regardless of the consequences at home. Have shared your experiences within our family, and as a palliative care RN. When is enough enough? Whose needs are being met to continue? Well done for hanging in there with your husband thus far; living your life in chemo/radiotherapy waiting rooms is exhausting and numbing. Having your life consumed by the emotional neediness of someone elses brain cancer is tragic. There are NO easy answers or pathways through this predicament – my personal belief is that your hope for some quality of time together will only come when chemo and radiotherapy stop. You could seek advice/support from Cancer Ass or your local palliative care team. Get support for you!

    • Stephanie Collins  

      What a great reply you have given Susanne, ShonaRobyn – there are no easy answers and my heart goes out to you Susanne. I have been through something similar and the personality changes are very hard to deal with even though you know it’s not the person you know acting this way. I am sure the Cancer Association will be able to support you.

  2. Lyn Traill  

    Oh how I can relate to this. The beautiful man that I married began to disappear long before the diagnosis. I wondered what was happening and it was almost a relief when the diagnosis was made as it at least gave a reason for the change in behaviour. I can certainly understand that you do not want him to try again. We went through the whole radiation scene and each time I lost him more and more. It was only at the very end as I lay with him in the palliative care ward that I had glimpses of my darling man. He asked to be let go and I was able to do that for him. He also begged me to go on with my life. That was more difficult but three and a half years later my life is on track and I am so grateful for the special time we had together. He will always have a piece of my heart but I have to admit it is a relief the nightmare is over.

  3. Kerrie Bloxsom  

    What you are going through sounds worse than what my husband and I went through however every time my husband decided that he wanted to keep fighting I also felt I didn’t want to see him suffering like he was. However since he died I would give anything to have him again for even one more day.

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