Andy: "If you jump back 12 years ago, it's quite a story. I was actually Fran's boss. We worked in a distribution facility and I was a team leader and, to be honest, she didn't really like me at all! She left and moved to Scotland with her mum and dad. Then, about two years later, I had a friend request on Facebook from her and we spoke all night that night. You know when you get to the point where it's five o'clock in the morning and you can't believe it's that time! Then about two weeks later we'd met up and the rest is history really."
Dr Parnacott: "Fran has quite a rare condition called a ganglioneuroblastoma that was diagnosed when she was pregnant, and it was found to be this rare tumour. This sort of tumour can have two components: one is very aggressive and grows very quickly, and the other can be quite slow growing so it's what's called an intermediate tumour arising from nerve cells."
Fran: "The whole finding of it was when I was 22 weeks pregnant at the age of 23, I fell down my stairs and had to go and have a scan and they found a tumour on my right side the size of a house brick. I had to have my baby early, so they could get the tumour out. It was all crazy go from a happy pregnancy to ‘Oh my god'."
Andy: "That was basically the start of our journey from Xander coming out, scans, and then obviously that's where it all started."
Dr Parnacott: "Fran had to endure surgery and chemotherapy and she's also had radiotherapy. The disease has caused her various challenges over the intervening nearly six years; it's caused her to have part of her lung removed, it's caused weakness of her legs so she needed some urgent radiotherapy to her spine to ensure that her legs would still work, she's had to have metal rods inserted into both of the long bones of her legs because she had disease there which means she could have a fracture. And more recently, the disease has progressed again and caused her to become paralysed from the waist down."
Fran: "It was okay, but it got more difficult because of my pain. The reason I'm mainly under Ashgate is for pain management. I'm under Dr Sarah Parnacott and she deals with a lot of my pain so that's the reason I got put forward to her, to deal with it. But other than that it was a bit of a struggle to be at home. It's slowly making it harder and harder as the pain gets worse."
Andy: "It's been six years now since she's been diagnosed. So, obviously Xander came early and he's about to have his sixth birthday. So six years we feel like things have been on hold, we've struggled to make plans, and the whole dynamics of life and being in a young relationship, a young marriage and having a young child have been consumed in the six years we've dealt with the disease.
There are no guidebooks or instruction books when you get thrown something as terrible as this, so you have to just knuckle in and be as strong as you can. Obviously, I married Fran and I promised I would be with her for the rest of my life and it's important to be strong. Having a young child as well you need a stable home life. If you haven't got that, then there's no point at all because it would just ruin him and our relationship would be in parts. So, it's just all about being strong and Fran is a really strong person."
Dr Parnacott: "I first met Fran about four years ago. She was referred to me by her oncologist to see if I could help with her pain management in the community."
Fran: "It took a while for Sarah to get me to actually come and stay because I always thought people came here and they didn't go back home. You came here and that was it. I had the image in my head that once you came here, there was only one door out. It took a while to persuade me that you do go home. She said, the majority of patients do go home. So, I gave it a try. And it's a good job I did because I've benefitted a hell of a lot from it."
Andy: "With Ashgate and her being in here, it's strange, and it doesn't sound right to say this, but it feels like a home from home. You can walk in and staff members will come up to you and call you by your first name and it feels like there are no barriers, obviously there's a level of professionalism, but if feels slightly different like it's more personal. I get peace of mind that Fran is getting that side of things when she's here even though when she's not at home it's not the same. Secondly, I think that Ashgate have done really well to motivate her and give her goals. Things aren't very clever at the moment and we know what the inevitable outcome is going to be but the fact is that they still motivate her and get her outside and they organise a comfy chair for her and we go out to the gardens.
On our fifth wedding anniversary which has just passed, Ashgate organised a picnic out in these gardens. I mean, she could only get out of bed for 20 or 30 minutes, but we still have that memory of the three of us, left alone with a picnic and we had fun and games with Xander and it's that personal level that just takes it beyond the care you'd possibly get in a hospital."
Fran: "They've always helped me get home, get equipment I need at home. They got me a stairlift fitted for when I went home. Before Christmas (2017) I'd only had one leg surgery done and I could still walk about so they got me a stairlift so I could get up and down the stairs. But then, I had to have my other leg done for the tumour coming in that leg so since then I've had to change my house completely round and now I've got a bed downstairs. So, literally anything I need, they get it set up. I can just ask for it and it turns up! It's really good."
Dr Parnacott: “So actually, Fran will be going home from the Hospice again and when she's back at home she'll be seen by our occupational therapist, she'll be seen by one of our community nurses, she'll be seen by the physiotherapist, and, if needs be, the doctors will go and visit her again. Fran will also be coming back up to the Day Hospice once a week so she's got that ongoing support.
The Day Hospice during this inpatient stay has been absolutely critical for Fran. Our creative therapist, Lucy, has been absolutely instrumental in finding things for Fran to do and things she can put in a memory box for Xander. That's been really critical for her."
Fran: "It's great to get home when I'm with him [Xander]. I know it's only a single that I've got but he does snuggle onto it and likes to come and sit with me quite a lot which is nice because I don't get a lot of mummy-son time."
Andy: "Ashgate have followed the care from the start. We were referred to Ashgate right in the beginning regarding Fran's pain levels, we really struggled with that. We've had that link with Ashgate from the very start, before it ever became terminal, so we've got that relationship. Then obviously at home that follows on, it keeps going. They're linked in with the district nurses, they're constantly reviewing her pain levels, it's a very close relationship where they look at different aspects, they understand our family and how we function, and they tailor what they need to do to help us the best they can.
Ashgate have been absolutely phenomenal. I think, without that aspect of support, it would be quite hard to maintain other aspects like holding down a career and maintaining a stable house, without the support from Ashgate. It's not just the fact that she comes to Ashgate for care, it's the fact that she can be at home and get the follow up care and they're keeping an eye on her. Having that peace of mind through Ashgate is just brilliant and it's helped me immensely."
Fran: "I know I've got my husband but I need the extra intervention of the staff. I don't think I'd be here to be honest because my pain would have been too much and I wouldn't have been able to support myself."