The Final Days

21 October, 2022 | By Kain van den Elsen, Jean van den Elsen

Ingrid's final days

On Tuesday the 5th of July, Ingrid was discharged from hospital and returned home. She was so happy to be back home and for all of us it was such a relief and joy to have her with us again. Just being home really lifted her spirits and we had a lovely evening together as a family.

The next day her fatigue set in again and we arranged a hospital bed for her in our living room as she couldn’t manage the stairs anymore. Even walking to the bathroom became too exhausting so we also arranged a commode for her.

More and more, she slept during the day but always looked forward to spending our evenings together as a family, watching old home videos. For us as a family it was all hands-on deck, making her feel comfortable and keeping the house cool during the July heatwave.

Occasionally, she would join us outside, enjoying the sunshine and the garden. She loved her morning coffees with us and relished the cold fruit smoothies we would prepare for her. She would also sometimes join in with our evening meals. Ingrid always loved her food, but with the increasing bloating, nausea and constipation solid foods became less and less agreeable for her.

After she had been home for two weeks, she was becoming more and more jaundiced, with her skin and the whites of her eyes yellowing rapidly. Confusion and delirium started to set in, and she would often wake up disorientated and restless. In the last week she still managed to pull herself together, helping us with listing out the people she wished to invite to the funeral and the wake. She also dictated the end of her last blog post to us.

The blog was hugely important to her and she wanted to make sure she finished it. Friends and colleagues would visit her daily but as time went on even a five-minute chat became too exhausting for her. Eventually, only her closest friends would come by and sit beside her, keeping her company while she slept. She was never alone and one of us was always with her, day and night.

On the morning of July 20th, she enjoyed her last cup of coffee, savouring every sip and expressing repeatedly how much she enjoyed it. That morning she was doubting whether she’d last until the end of the day. This was a special day for us, as daughter Isra had her graduation that afternoon, and Ingrid was adamant not to miss the ceremony.

As she wouldn’t be able to attend in person, we watched the ceremony online and son Kaïn accompanied Isra, filmed and took photos for Ingrid to see. After Kaïn and Isra had returned from Reading that evening, Ingrid became unresponsive. She clearly had been holding on until their return home. We spent that evening with her, listening to the music from her funeral playlist and reading messages to her from family, friends and the jar of love.

The final two days were heartbreaking. Her breathing got heavier, and eventually she started to exhibit the signs of dying. This was a disturbing time, and nothing mentally prepares you for witnessing a loved one die. She received morphine and benzodiazepines through a syringe driver to ease her pain and restlessness, and we moistened her mouth with oral swabs. We were taking turns being with her, holding her, and speaking softly. She peacefully passed away in the early morning of Friday the 22nd with us by her side.

Final remarks

During her illness Ingrid never complained. She was completely selfless, and even apologetic for everything we went through while looking after her. Ingrid was a strong advocate for assisted dying and although her suffering wasn’t particularly prolonged, we believe that she could have been spared the unnecessary suffering and anxiety she experienced in her final few days and could have died in a more dignified manner. In addition, we would have been spared the traumatic experience of witnessing the dying process and the feeling of helplessness and distress when seeing a loved one suffer up close.

Please don’t be disheartened if you are a breast cancer patient reading Ingrid’s blog. Ingrid’s case was pretty unique. Hers was an extraordinarily aggressive tumour and unresponsive to treatment, astonishing everyone (including the oncologists) with its speed of progression. The cancer took her within ten months of diagnosis; so much more quickly than was expected at any point during the disease.

Even with triple negative breast cancer, you are highly likely to have a longer life expectancy than she had on diagnosis of a stage 1-3 breast cancer. More research needs to be done on these aggressive triple negative breast cancers. It is such a diverse and amorphous group; and the standard protocol of treatment can easily fall flat. Regular ultrasounds to check the progress of the chemotherapy treatment would also help to tailor the right treatment. Ingrid’s tumour went from shrinking in her first ultrasound to advanced progression in the next scan four months later, all without us knowing. Ultrasounds are relatively cheap, and regular scans could help to identify fast progressing tumours earlier so treatment can be adjusted.

Additionally, Ingrid was only given immunotherapy once the cancer had progressed to stage 4, in accordance with the NICE guidelines. This could have been more effective if it was administered alongside the neoadjuvant chemotherapy in the early stages of her treatment, and we are pleased to see that NICE has now reviewed these guidelines. Another way forward would be the routine genetic testing of triple negative tumours. Cancer genomics is a fast-advancing research area and by comparing gene sequences of cancer cells with those of normal cells, we can improve our understanding of the molecular basis of growth, metastasis, and drug resistance of triple negative breast cancers and adjust treatments in a personalised manner.

Thank-yous

From us and Ingrid, we would like to express a heartfelt thank you to everyone who supported us during these difficult times: Ingrid’s amazing Bristol Breast Care Centre colleagues at Southmead Hospital in Bristol, the William Budd oncology team at the Royal United Hospital in Bath, the district nurses, the Dorothy House nurses, all our supportive friends and family (there wasn’t a moment over the past year where our house wasn’t in bloom), Kath for editing the blogs, The Nursing Times for publishing, and you for reading them.

Kaïn & Jean van den Elsen

This blog was originally published in the Nursing Times. Many thanks to them for sharing Ingrid's story.