Comfortable at home

A lot’s happened since I wrote my last blog. The bottom line is that Ive stopped active treatment against the secondary breast cancer I was diagnosed with in March 2019 and I’m comfortable at home with possibly just weeks left before I die.

That’s such a difficult thing to write and a difficult thing to be living with but I can’t hide from it any longer. And it means I can have those very tender conversations with my beloved husband, sons, brothers, nieces and nephews, friends, colleagues and so many others. I can let everyone know what stage I’m at on my journey through this life.

I’ve had the support of my oncologist and her team every step of the way and frankly I can’t believe I’ve had three such good years since my diagnosis. I can’t thank her enough.

The cancer that was advancing through my body has, sadly, spread even further. In addition to the courses of chemotherapy I’ve been receiving, I’ve also had whole brain radiotherapy. There’s one further chemo available but I’m assured it won’t work and the side effects are brutal.

So for the last couple of weeks it’s been end of life care – at home. I now live downstairs, with all the medical paraphernalia that entails, including the marvellous 24/7 syringe driver that provides me with constant and continual pain relief and anti-nausea treatment.

At various critical times throughout the day, I take steroids to reduce the swelling in the brain, three or four different laxatives to tackle the constipation that the antinausea drug in the syringe driver causes and, critically, an anti-epileptic to deal with any seizures. I have blurred vision, which makes things very difficult. I can only see with any clarity at all things that are at about 8 inches away. If you come and visit me, I’ll only know it’s you by your voice unless you’re within that sweet spot. But at least I’m at home.

It took a long time to get me here from hospital; my last stay, when I was very ill, lasted two weeks. I realised I could die in hospital and I didn’t want that. But they couldn’t discharge me with the symptoms I had as they could only be treated in hospital. I won’t go into detail but I had great difficulty keeping down food and fluids, along with various other serious issues that thankfully have now been addressed. Now I have a team of carers who come in the morning to wash and dress me for the day, the evening to wash me and get me ready for bed so that I will sleep comfortably and during the day to replace the syringe driver when it’s nearly empty. All this had to be in place before I could be at home.

The healthcare teams were amazing in getting me well enough to come home. This time two weeks ago there were days when I barely knew what a phone was.

I am now under the fantastic care of the local hospice. I don’t want to be resuscitated if it gets to the stage where that’s an option. I’ve told my nearest and dearest there’s no need to feel guilty if they choose not to be there or indeed if they want to there but can’t make it. I will either die at home or at the hospice – but not in hospital. 

Life has been so, so good but it’s time to let nature take its course. Accepting that and letting everyone know is such a relief. I’ve had so many beautiful visits, messages and gifts from friends and relatives. They all agree that carrying this knowledge is much better than getting a surprise email or phone call bearing the sad news that I’ve just died. We’ve been able to celebrate our relationships with each other in a way that wouldn’t have been possible had I not been so frank. Friends have weeded and tidied my garden for me; they’ve massaged my feet and hands; they’ve painted my nails; they’ve brought frozen strawberry daiquiris; or we have simply just revelled in each other’s presence.

Those of you who follow my blog may remember I wrote about a wonderful country music song called Bring my Flowers Now (While I’m Living). That’s what’s happening now. I’m genuinely living “with death in mind” and hope that I will have a good death. 

I don’t know if I’m going to be able to continue with this blog for much longer. So let me say now how thankful I am to you all for reading it over the years and for your support. It’s been an important part of my cancer journey, allowing me to organise my thoughts and emotions. Living with advanced cancer is hard, but if what I’ve written has helped any of you, then I’m humbled and grateful.