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Living as well as I can

Viv Ashley dreamt of becoming a teacher or researcher, but after leaving school at 16, never thought it would happen. Instead, Viv started work within the field of welfare rights, latterly for homelessness charity Shelter. There she met Rachel, who was to become her wife.

Rachel encouraged Viv to do an undergraduate degree, followed by an MA before achieving a scholarship to work on a PhD exploring personal autonomy and how people make decisions in their lives. Towards the end of her research 12 years ago, Viv was diagnosed with breast cancer, prompting decisions about her own health. Viv shares her story:

There are a multitude of fears and worries that you have when you're diagnosed with cancer. One of the less obvious things I worried about was that despite being so close to achieving my PhD, I would be unable to complete it because of the treatment that I needed, and the fact that I might not survive.

Surprisingly, I was still able to work hard on it. I had my initial treatment then a period of remission for around 18 months during which I finished my PhD and graduated; one of the best days of my life! Not least because it was something that cancer didn't take away from me. 

I think that it was the beginning of a lesson for me; how to learn to live with cancer. It's not a partner that you want walking by your side, but it is a reality. I've always thought there were two ways that you approach the diagnosis of cancer; that you are waiting to die of cancer or that you are living with it. I wanted to live with cancer, I still wanted to do all the things that I planned.

When I had my secondary diagnosis, there was a referral to the hospice for support as I was in the ballpark of palliative rather than curative care. We had a wonderful clinical nurse specialist who would come see us, helping us with our care planning and what we wanted in the future as and when my health deteriorated. I decided at that point, that I wanted my last days to be in the hospice because I didn't want to die in my home and have lots of hospital equipment around it. I just didn't want to make it more burdensome for Rachel. 

Image: Viv and Rachel

Viv and Rachel on the day of their civil partnership ceremony

I now see how important that decision is because in the recent months where I've had more prolonged contact with the hospice and have spent a couple of weeks as an inpatient, I appreciate how much support the hospice can provide to Rachel and our friends and family when they visit. So, I think rather than being at home or in hospital in my last days, I'd rather have Rachel with me at the hospice getting support, caring for me still but with the support of the nurses so that she can get what she needs as well.

SinglePoint has been really important because my pain fluctuates from being annoying to being really quite painful to being unbearable. When it's been unbearable, they were able to come to the house and take away the pain. 

I stayed at the hospice for two weeks in order assess my pain medication needs, and during that period it was a real eye opener. When it was mentioned to me about going into the hospice, of course we get all ‘oh my Lord’. The hospice sounds so final, doesn't it? But the one thing I've learnt is, it's not final. It's part of my own thinking that I'm living with cancer, I'm not waiting to die. I'm living with cancer, and the hospice is part of what's in place to help me live as well as I can with cancer. 

That proved very much to be the case when I was there. I certainly got the care that I needed. I saw the care that was given to my fellow bay members, who I got on very well with, and I saw the support that Rachel and our friends got. People are treated with respect and with care. It was quite moving to watch some older, sicker patients who were coming towards the end of their lives and the loving care that was given to them, and the efforts that staff went to, to make sure their final wishes could come to fruition.

It was an amazing experience really, not what I expected at all, so I'm not scared of hospice anymore. I don't think we should be afraid of the word hospice; we should embrace it because it's there for a particular purpose, and it doesn't mean that you're going to die imminently. It's helping you live with the cancer diagnosis or some other disease which is life limiting or painful in some way.

Rachel and I have been together for 23 years. You really find out the strength of your relationship when it's tested by something like this. I'm not surprised that it's as strong as it is, and that Rachel is as good as she is at looking after me and sharing the load. I hope I'm not too much of a burden to her.

Undoubtedly, my cancer has changed our lives and in some ways, it has enhanced it by making us more appreciative of life and each other. It's about accommodating cancer in your life because you don't have any choice but that doesn't mean the cancer is your life. It's just a facet of your life that you have to accommodate. There's still lots of joy and lots of opportunity to be happy.

At the hospice, patients are offered a range of lovely food and we can eat together, as patients’ relatives can buy their food there too. That way they get to be looked after and can build up their resources because maybe they've lost some weight, maybe they need a little bit of looking after as well. I mean, it's just genius, isn't it? Just a relatively small thing, but the huge difference it made to us.

I'd say to people, try not to freak out about the word hospice. Hospice for many people means dying, but that's not what it's about. Sure, people go there because of an illness and because they're going to die and they need specialist care. But as in my case, I went there because they wanted to give me the best quality of life possible. The hospice is there to try to give you a better quality of life. It's not about preparing you to die unless that's something that you want to talk about; perhaps you do and perhaps that can be a bit scary sometimes. But don't avoid the possibility of the kind of excellent care and support you can get from the hospice because you're scared that you're in some way acknowledging that you are dying.

I'm not frightened of death, I'm sad that I don't have as much time as I want. I think that's what it is. I'm not scared of dying. I think there are things to be worried about, like where you are going to die and how you are going to die. I don't want to die in pain. Having the support of the hospice takes away some of the fear.  

Image: Viv who is being supported by St Helena Hospice to manage breast cancer


Image: Rachel, partner of Viv who is supported by St Helena Hospice for breast cancer


This story may not be published elsewhere without express permission from St Helena Hospice.


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