Guest post: "We accepted there was no longer a cure for my son's cancer, and enjoyed our last weeks at home"
Sacha Langton-Gilks' son died from brain cancer aged 16. She explains how they made the decision to transfer from curative to palliative care
Posted on: Tue 08-Dec-15 11:58:12
(34 comments )
"So I'm going to die?"
My son David, or DD as he was known, was asking me calmly in a small hospital room in the presence of his cancer doctor (consultant paediatric oncologist), his brain surgeon (consultant neurosurgeon), a specialist nurse and his father. "Yes," I replied.
This was DD's response to hearing: "I'm afraid that David's scan results were not what we wanted to see." Then it's a memory blur until, "we can all agree that there is now no chance of his cancer being cured".
It had been the longest haul. "Arduous", as our exquisitely dry surgeon put it. Five years in total, taking in 11 brain operations, two solid years of chemotherapy, the maximum allowed full brain and spinal radiotherapy, and a stem cell rescue. Our initial 75% chance of eventual cure had vanished, but everything had been done by everyone. I knew exactly what to do next and therefore led: "We're going home."
Everyone looked at me. Our cancer doctor looked puzzled. Usually conversations were directed to, and then by, our son who was by now 16 years old. DD was incredibly bright and interested in science, with dual ambitions to go to university to read something to do with the environment and to acquire a girlfriend. My husband and I only joined in if DD looked to us for direction or if he'd missed out something clinically important.
But I knew something they did not - not even my husband, the signs were so subtle: DD had the beginnings of dementia. He'd had a minute memory lapse, and then said something odd about a mundane car journey about a month or so before. These incidents were totally out of character and until I saw that scan, I had tried everything to explain them away. Other symptoms had driven us back to hospital. So I knew that to have expected DD to have made the most difficult decision of anyone's life would have been unfair, unnecessarily stressful and cruel.
We had to weigh up whether any treatments offered now would be worth it - whether the quantity of life possibly gained was worth it, given the impact of side effects on the quality of his life
Given that DD's type of brain cancer was very aggressive I knew we only had weeks rather than months, so time was precious. Essentially we had to weigh up whether any treatments offered now would be worth it - whether the quantity of life possibly gained was worth it given the impact of side effects on the quality of his life. The scan showed multiple spinal and brain tumours and the longer we tried to keep him alive, the greater the risk that we would not be able to control inevitably escalating pain - not that I said this out loud to my son.
We were choosing maximum quality of life for our son, which potentially meant a shorter one. We were going home for full, active palliative care to take away all the symptoms of his ghastly disease in order to do the things he loved with the people and animals he loved. This is the essence of this meeting, of the transfer from curative to palliative treatment - changing your hope from one of cure, to something else you want to achieve. You are not giving up. My husband of 29 years looked at me and we knew we were right. He nodded, in tears.
DD was in shock. He did not ask any questions until we got home that night and I was hauling myself into bed. "Why can't I just take a pill now if I'm going to die anyway in a few months? Why do I have to wait?"
He had started following Buddhist teachings in the midst of his treatment - life is suffering and so on - the idea of death, therefore, didn't frighten him but I suddenly understood that the process did. I decided not to explain "because it's still illegal" but rather to allay his fear of the unknown: "Do you remember the other three times you've nearly been dead?" He shook his head. "Right", I continued, "it'll be the same, you won't know. We'll have all the medicines to make sure you can't feel anything, so until then we can just enjoy ourselves and party." That satisfied him; he did not ask any questions about death after that.
Three years on from DD's death, the decision to go home was the best I've ever made alongside marrying my husband and our deciding to have the children. DD's quality of life during what turned out to be exactly three months was fantastic. Even fading into a coma in the last few days, the last lucid thing he said was, "I love it here". The cat was on his bed asleep; his little sister was on a play-date but due back any second; his brother had a friend round; my Mum and sister had popped over to give me a hand as I was, inevitably, exhausted. All was as it should be.
This death was a huge event, like a birth, but one within the framework of a normal family life. A mum whose six-year-old had died at home of the same brain cancer with the young siblings all present - we had become friends through our sons' illness - had given me the confidence that I could do it too. "The death was okay", she said. She was right. It's the loss that is not.
Together for Short Lives is the leading UK charity for all children with life-threatening and life-limiting conditions and those who care for them - for more information, visit their website.
By Sacha Langton-Gilks
Thank you for sharing. I cannot imagine how hard it must have been and still is. I'm sorry.
Those three months at home must have been so very precious and for David to say 'I love it here' shows you made the right decision.
Thank you for sharing this. DD, you and your family sound wonderful, and you write beautifully about your son. I'm so sorry for your loss, and wish you peace and happiness.
I am so sorry for your devastating loss of DD.
He sounds like he was a remarkable, bright and brilliant person. My thoughts are with you, and your family at Christmas, and I hope that by taking DD home you were able to make more happy memories and make DD's days more comfortable.
What a well written and touching article - an important message for young people and their families.
I am very sorry for your loss of a young man with such potential but it sounds like you all worked together to give him the best quality of life surrounded by those he loved in his last months.
What a tremendously eloquent and moving post. Thank you to Sacha for sharing a story of such great personal sadness
Thanks for sharing and sorry for your loss
One sentence stands out in your well written article
The death was ok the loss was not
Agree with this in spades. I didn't have my second daughter for as long as you had your son and relatively speaking her death was very quick. She died from meningitis at 17 months old.
Loss never leaves us does it ? But we have to go on.
for you and I hope you are managing to carry on.
Promise I'm managing to carry on - it's certainly helped campaigning to stop children in the future suffering to the same extent. Gutted about your loss too. DD had post-operative meningitis after his second brain operation - that has to have been the scariest night of my life. Thank you for your lovely words. Take care. x
My son also died from brain cancer; he was 11 and I am so glad he was at home. We didn't know his death was imminent, he'd just started on a clinical trial, but the running theme through 3 and a half years of treatment and hospital visits was "When can we go home?". He really lost his confidence in the last few months and confided in me that the only place he felt safe was at home.
You made absolutely the right decision for DD.
One of my closest friends had to make a simillar choice. His 15 year old dd had Ewings cancer, she was too sick from Cheomo to have more and the cancer had by then spread through her whole body.
I rember having the conversation in his shed after the doctors gave him the choice to bring her home or not.
For him, as a lone parent it was tough, due to her age and carer's insurance he couldn't leave them alone and go out, but undoubtably gave his dd a better last few weeks.
Sorry for your loss.
Brain cancer really is modern medicine's dark side in terms of treatment. Don't know about you but it's very difficult to explain to anyone who hasn't been there just how bad it is. Was gobsmacked to find out it was the biggest killer as a disease in the UK 2-24 years. Like your son, DD just wanted to be home. We got expert at getting him there as fast as possible - our record was checking out 24 hours after more brain surgery! Hope you're doing ok?x
Stinkyfeet - Brain cancer really is modern medicine's dark side in terms of treatment. Don't know about you but it's very difficult to explain to anyone who hasn't been there just how bad it is. Was gobsmacked to find out it was the biggest killer as a disease in the UK 2-24 years. Like your son, DD just wanted to be home. We got expert at getting him there as fast as possible - our record was checking out 24 hours after more brain surgery! I'm so sorry about your son. Hope you're doing ok?x
Thank you for sharing your story. I'm so sorry for your loss.
Thank you for sharing, a beautiful ode to your son. I'm so sorry for yoru loss.
Thanks TuMu, we're doing ok. This will be our first Christmas without him, so I know there will be moments of sadness, but it will not overshadow the whole season. We have younger son, so life must go on and fun times must still be had for his sake!
Stinkyfeet - so glad to hear you're ok. We're approaching our 4th Christmas. Toughed out the first two, last one was much easier. Something about holidays making it more obvious that someone's missing and I'm not distracted by work routines as much. Having fun - that has been my goal. So easy to say but so hard to fulfil! I know that DD was just so concerned to know that we were going to be okay and carry on doing what we normally did - you so do feel you owe it to them to enjoy the life that brain cancer robbed them of. I send you massive good Christmas cheer.x
Such a beautiful post. It really was. Thank you for sharing. And I'm so sorry.
Thank you for writing about this, very moving.
Thank you for sharing. Your son was lucky to have you. My DF died from a brain tumour this year. Last Christmas he was fine, this one he won't be here. Six short months from diagnosis until the end. Heartbreaking. My DGF is still alive and struggling. Outliving your child is not the expected way of things.
I wish you well for the future and I am so sorry for your loss
Thank you for sharing your DD. I too lost my son to a brain tumour aged 18. We tried to give him the best death we could after we knew the best life was not going to continue. We spent the last few days in a beautiful hospice as that was the right thing for us. Will had shingles at the end that went to his brain and he needed medication to control the hallucinations. As you said previously brain cancer is just gruesome.
This is my second Christmas without my eldest son - and I'm finding it hard to face.
My heart goes out to you ladies, my partners nephew died of cancer last year, he was 19, and I lost lost my maam 7 weeks ago and when i feel bad about losing my maam i think about my partners nephews mum and how shes going on, as her son had no life at all and at least my maam lived and that makes me feel a little better.
I feel privileged to have read your story and seen a small glimpse of your remarkable son. Thank you for sharing.
Wow. That's powerful. I'm so sorry that you lost your beautiful teen Son.
Thank you for writing those words - some of which "The death was okay", she said. She was right. It's the loss that is not have sorted out an unexplained feeling about a personal loss for me. Thank you
minmooch, I am so sorry. Shingles - those vile illnesses on top of the brain tumour were just added insults. Felt like being underwater the first two years afterwards - I know you'll look after yourself this Christmas, it is so hard. Feels as if I've now got used to the damage to my heart and am better at life; I'm certainly finding it easier to enjoy memories and go into his room without acute pain. Wish I could wave a wand and get you there faster but know there are no short cuts to grief. Sending you love for Christmas & hope lots of hugs come your way - seemed to ease the pressure in my chest.x
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