Guest post: "I want to die at home, surrounded by people who love me"

[MumsnetGuestPosts]

Facing death is not something anybody ever wants to contemplate. But that is exactly what I've had to do for the past five years. At the age of 29 I had the perfect life. Happily married, successful career, great network of friends and family, beautiful home and in the early stages of planning to conceive our first child. My life was all I'd ever dreamed it would be. But all that was shattered into minuscule pieces when the cancer sledge hammer hit us, and we discovered my incurable diagnosis; a diagnosis that came completely out of the blue and destroyed our lives as we knew them.

As a doctor specialising in the care of older people I had some familiarity with dying. I'd sat and held the hands of patients as they drew their final breaths. I'd comforted families through difficult conversations around end of life care for their loved ones and their eventual bereavement. But now it was my own mortality that had come into a sharp, unavoidable reality.

The cancer was very aggressive and advanced; my kidneys had failed; I was in intractable pain. There really was no hope of cure no matter how optimistic your view. As a clinician I didn't know any way to get through something so life changing, other than addressing it head on. Within days of discovering I had bone and liver metastases, I had made the decision that I did not want to undergo cardiopulmonary resuscitation. I wrote my Bucket List. I made a will. I started work on a memory box for Chris. I specified my end of life care preferences in writing. Attending to these practical considerations gave me a peace of mind that allowed us to accept what was happening, and then move on with living in the present with a degree of calmness.

My initial response to palliative chemotherapy was amazingly good. The cancer shrank down into smaller dormant tumours within my body and we were allowed to get on with living our lives. However, the death gremlin has constantly sat on our shoulders ever since, waiting at any moment to pounce. Both Chris and me have understandably been through the 'why us?' questions and the 'it's not fair' emotions. But those feelings do not dominate our thinking. We take a realist view and try to eke every last bit of life out of each day. We are where we are, and it is what it is.

Thoughts about death often creep into my consciousness though. I wonder about what it will feel like, what symptoms I might experience and I reflect frequently on my personal vision of a peaceful, 'good' death. I've picked out my favourite music, particular candles with soothing scents and the books I'd like my Mum to read to me. I desperately want to die at home, surrounded by the people who love me. These preparations are designed to create an environment with comforting childhood memories, making me feel as safe as I can despite the horrendous circumstances.

However given my professional experience I know only too well that I may not achieve my serene death ambitions. I know that my symptoms may become uncontrollable at home, especially if I develop a bowel obstruction. I fear being bundled into an ambulance and carted off to hospital. I fear my eventual loss of independence. I fear not being strong enough to see it through to the end.

I have been extremely publicly transparent about my health problems by writing books and using social media. Looking back I think this is thanks to my inner teacher; I want to share my experiences to improve care for other patients. I felt so useless and lacking in purpose at the beginning of my illness. Getting my laptop out to write the whole sorry saga down seemed a natural response. I needed to process what I was going through and I wanted to emphasise how healthcare professionals’ behaviour impacts the people they look after. This project has now gone one step further, and I plan to share the end of my life on Twitter using the hashtag #deathbedlive. Unexpectedly I now have a huge social media following, and I hope one of my final legacies will be to promote a national conversation in society around death and dying by using this powerful voice.

I'm one of the lucky ones. I genuinely believe that. I have the support of an amazing husband, who has been there for me every single step of the way. He has made our lives truly incredible and I never know what the next lovely surprise might be. We are able to live comfortably in our own skins, with the lurking existence of the death gremlin, because we are honest and open with each other. Talking about death is never going to be an easy task, but Chris knows my wishes and I am absolutely sure that he will protect them right up until the end.

9-15 May is Dying Matters Awareness Week – for more information, visit their website.

[Iliketeaagain]

None of my words would ever make things better, but know that you are an inspiration to many, and certainly your words, on Twitter and the hellomynameis campaign have inspired me and my own personal nursing practice.

And I hope that your legacy is that dying patient and their families talk about death, that it becomes something we are not scared to discuss and plan for and hopefully improve end of life care through out the UK.

[Twitterqueen]

You are an inspiration Kate. Thank you so much for sharing this and for being so open about your experiences, hopes and fears. Huge respect for you and for your husband, Chris.

[expatinscotland]

Thank you so much for your openness about facing death.

I became a member of Dying Matters through fellow bereaved parents. My daughter died in hospital following treatment for acute myeloid leukaemia, age 9, nearly 4 years ago. Though her death in hospital was unavoidable (she developed pneumonia and then respiratory failure), sadly, more than a few children who were treated with her have also died and most did so at home. Being bereaved of a child is a very isolated place.

We still have a very long way to go towards making this life process pain free and as comfortable as possible in so many ways. Dying Matters is invaluable in this.

Thank you so much for sharing so much of yourself, too.

Death is the most neglected part of life, IMO.

[StandoutMop]

Thank you for this post and I hope you get the death you want. My father died of cancer, at home in his bedroom of 30+ years, with his family around him. It was what he wanred, and made his death easier for us to cope with. It feels odd to write this, but I honestly believe he had a good death, and I wish the same for you.

[pinkcarnations]

Thank you so much Kate. Your books, blog and words on Twitter helped me so much when my Mum was dying of cancer.
You gave me the strength to be able to talk to her about what she wanted and the confidence to advocate for her as things progressed.
She wanted to drift away quietly, and with the help of an amazing hospice, we were able to achieve this for her.
I so hope that you are able to have the death you want and that your loved ones can take comfort from having helped you fulfil your wishes.

[ReadyPlayerOne]

Thank you for sharing this, I am in awe of your strength and resilience in the face of death.

[SheDoneAlreadyDoneHadHerses]

My nanny died at home with her eldest daughter by her side (not all the family could get there, but had visited her daily). As much as the hospice was a place of entertainment to her (the offer of a daily brandy was never turned down!) being at home, being safe and comfortable was of immense security to her.

I hope you get the comfort, security, and passing of your choosing. Knowing you're with your very best loved ones is a joy at any point.

God bless.

[Ambiorixa]

Thank you for sharing Kate. I'm sorry you have to face this and I am in awe of your strength. It can happen to all of us and I hope that if I am faced with my own mortality like you have, that I will have the strength and grace you have shown.
I lost a dear friend this week to cancer. She too was lucky to have reacted well to palliative treatment for a good 10 months and she lived bravely. For her this wasn't through a bucket list or organising her 'what happens after' life. For her it was creating a safe and 'normal' environment for her 4 children with lots of laughter. She too had incredible strength and grace. I am grateful for the extra time she had and for her friendship. I hope you get a lot of 'extra' time so that you can keep having the positive impact on people that you do!

[indecisivedoctor]

Kate, I feel sure that you must be told this so very frequently but you are an absolute inspiration. As a woman, as a doctor, as a human being. Sending love & strength. X

[Lifeisontheup2]

I am enormously grateful to you Kate, for your inspiration. I now work harder to keep people at home for their remaining hours and feel much more confident in spending time making sure that help is in place to enable people to have the death that they want.
As a paramedic, I am often called when family members panic in the final hours of life and don't know where else to turn. I can now advocate with confidence for my patients. Thank you.

[Aethelfleda]

Kate, you are a huge comfort to many people through your writings and I wish you peace and exactly the the calm resolution that you desire. Well done for all you have achieved and may the rest of your journey be the right thing for you and yours.

[motherinferior]

I'm sorry, but I'm going to come at this from another direction. Dying at home demands huge amounts from those around you. Frequently people who have not been asked if they are willing to make this contribution. People who will feel they have to do this but find themselves delivering personal care; sorting emergency callouts - which take time to arrive; panicking because they don't know what to do, but keeping on with a brave smile and trying desperately to maintain an atmosphere of calm.

This won't, I hope, be the case for you but it is the case for many people who decide to die at home rather than in a hospice.

And I know this because my mother died last Friday. It took incredible amounts from my sister and from me. I wished very much that she had made another choice and opted for a hospice. By the end we could give nothing more.

Of course I want you to have the death you choose and I think you will have a different situation. But it's not the best answer for everyone.

[Hellenbach]

Kate I have followed your blog for some time as my husband has had cancer for 15 years.

He was discharged from hospital last week to come home to die. The support put in place has been fantastic.

A night nurse from 10pm-7am each day. A carer 4 times a day. District nurses daily. Palliative care daily.

This is exactly what we wanted and is definitely the right choice for us as a young family. My children are very involved in my husbands end of life and it feels very natural.

He has no pain, he has a syringe driver, injections and liquid morphine. I am hoping he will slip away peacefully.

I wish the same for you when the time comes.

We have shared some lovely moments over the past week and

[Doobydoo]

Thank you Kate for sharing. Expat I agree. There is a lot of work to be done.

[Simmi1]

Thank you Kate for sharing - you sound like a wonderful, strong person

[MotherOfAllMarshmallows]

Sending my love to you, Kate.

Thank you for sharing so much and bringing such important topics to the fore for us.

Since first hearing about your fantastic work with "Hello My Name Is", I have thought of you, and of your husband and other family, frequently. My thoughts are especially with you now, and will continue to be so.
From another internet stranger. x