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The importance of a dying wish.

Lynn Chitty, 59, lost her husband Lawrence to a brain tumour following his diagnosis last May. Here, Lynn shares the story of her loss including how her husband’s desire to die at home was not followed.

Lynn and Lawrence Chitty.

“Lawrence didn’t really have any symptoms in the weeks leading up to his diagnosis. One day, he was doing some gardening and said that he suddenly didn’t know what he was doing or what the day of the week was. Looking back, he had a flickering in the corner of his eye one time and a few little things, like forgetting to hang up the tea towel, could have been signs but nothing more than that. We all do things like that when we’re busy or distracted.

I called an ambulance and the crew thought that Lawrence had a stroke. He had a CT scan at the hospital which found five lesions on his brain. More tests and scans confirmed that it was a high-grade multifocal glioma.

Lawrence was never unwell so it was a huge shock. Sadly, it was slightly familiar territory as my grandfather had died from a brain tumour when I was at university. This didn’t help me though as it was a different tumour type which changes everything.

Lawrence’s largest tumour was inoperable due to its location – three small ones were nearby and one in another location. The only real options for treatment were radiotherapy with oral chemotherapy. We went through the routine of medication and treatment every day for three weeks relying on lifts to get us to and from the hospital as I don’t drive and Lawrence wasn’t allowed to anymore.

As time went on, his brain swelled due to the treatment and soon Lawrence struggled with his balance or to coordinate himself to do much at all – he couldn’t even sleep as he used to. His lovely long hair fell out but, as there was so much, he fortunately never went bald. Steroids helped with this but his thought processes still slowed. But the medication did mean that he could go for walks, do the shopping, play his beloved guitar minus a few chords he forgot and sing his favourite songs. Lawrence could also help me with my hobby of bee keeping which we always enjoyed together.

Of course, Covid stopped us from seeing our friends as much as we would have in what ended up being the last year of Lawrence’s life. We also had great plans to renovate the house which Lawrence had inherited from his mother. Covid had delayed our plans for so long. Thankfully, the steroids meant that he could help me with this again which meant so much to us both.

We managed to get out to a couple of our favourite festivals, Wokingham Festival and Wickham Music Festival – after the event organisers kindly swapped our four-day camping tickets to one-day VIP ones as Lawrence may have found it difficult to sleep without the comforts of home. We experienced great happiness at attending these and they are good memories. Through those strong and positive memories, it was largely all so horrible though and I found it all so distressing when so little could be done to help him.

We were denied the ability to do so many things for ‘one last time’. The thing which hurts the most is that he wanted to go back to a Cornish hotel we had stayed in for a holiday in 2015. We just didn’t have the time to organise it whilst he was still strong enough to travel a long way.

Covid also made it all the more difficult to navigate care and treatment. Appointments were more often on the telephone which made it harder for Lawrence to process. Hospitals were busy and we had lots of additional considerations at every appointment.

The specialist nurses for occupational health and speech were the most helpful and sympathetic. We were appointed a Clinical Nurse Specialist but we struggled to get hold of them – there were only two nurses allocated to brain cancer care so they were stretched as thinly as they could be. I couldn’t help wondering if Lawrence wasn’t given as much attention because his tumour was inoperable so our time was always going to be short-lived. He also had a Holistic Needs Assessment but we struggled with non-specialist staff who maybe didn’t fully understand Lawrence’s memory, processing and recall problems.

Having someone there right from the beginning to guide us through both the medical and practical side of things could have made such a huge difference to us both. I would have loved to have someone independent to talk to either face-to-face or on the phone about what was normal, what we should be asking for help with and what we should have been offered. It could have dramatically eased the stress of it all.

The Brain Tumour Charity is there for that exact purpose – their support team provides help, information and guidance every step of the way following a brain tumour diagnosis. I only found out about the organisation as I was arranging Lawrence’s funeral and I asked about a charity we could donate to from Lawrence’s memorial. We were told nothing at the point of diagnosis.

For as long as I can remember, Lawrence had always wanted to die at home. We have always talked about that at pivotal times in our life, like when we got married or we inherited his mother’s house. Maybe some hospitals have no interest in facilitating this, even if it what the patient wants. Lawrence was in hospital recovering from a seizure when he reached the point of needing palliative care. The consultant called me and said that a form had been completed on his behalf without either of us being consulted – I never even saw it. It was also filled in during the last week of Lawrence’s life instead of at the point of terminal diagnosis, which the hospital admit was wrong and have said they will improve practice.

I will never know what could have happened if I had challenged this decision. Maybe he could have lived longer – even in a limited sense. I was too distressed so I only asked about his choice to die at home. The medical teams said that if Lawrence responded to the drugs used to stabilise him then they would consider it but from then on they just kept saying that it would be very difficult to do.

On the last day of Lawrence’s life in September, the medical teams told me that I could bring in some things from home to make the hospital more comfortable for us both. Hours later, my husband died with with his face in my hands as a care assistant, who showed great compassion, and I were shaving him. I think I will always feel guilty about not getting Lawrence home and where he wanted to be. But I am glad that I was holding him in some way when he died. I stayed with him until he was taken to the mortuary – I needed to in order to try and gain some form of closure.

Lawrence had fought hard to lead a normal life in the months following his diagnosis. Lots of people tell me that Lawrence adored me – even in his last week of life, he could still remember my favourite colour. He told me that he was worried that his mother’s house still needed work. He was upset that the machinery to cut the grass on the inherited land was not working and needed fixing or servicing. He wanted to leave me safe, provided for and without any worries. I told him we would find a way for him to show me before he died but we ran out of time.

Instead, during the last week of his life, after the seizure which led to his hospital admission, he experienced difficulties using one of one of his hands and to speak as clearly as he used to but he could still find words. Eventually, he spent most of his time sleeping.

If only we could detect brain tumours earlier, and treat even the most aggressive ones, to give people the time together which they need more than anything in that situation. If my husband had been able to enjoy a couple more years of quality time, instead of the painful few months he did have, then we could look back and know we spent the last time together well. We could have ticked items off the bucket list. We could have properly made plans for the end of his life. He wouldn’t have had to worry about leaving me with work on the house undone as we would have had the time to do it together.

I often say that if only he had a different type of cancer then he may still be here and enjoying certain aspects of life alongside effective treatment. I looked after my dad for ten years whilst he had prostate cancer – and he now lives a normal life requiring just a little extra help. When most people think of cancers, the first ones which come to mind are well-publicised and have high survival rates. Maybe not many people realise there are so many people diagnosed every year which cancer types which are not so survivable. I wish that could have been the case for Lawrence. Five months was too little time – the people who only have weeks left with loved ones are denied so much.”