Janine Ledger-Germain's Story
Janine was diagnosed with kidney cancer in March 2015 at just 39 years of age. Two weeks after the initial diagnosis she underwent an operation to remove the kidney. Fortunately the procedure was a success and no further treatment was required, but she had regular follow-up scans to monitor her progress. A year later, almost to the day, a set of scan results came back with the devastating news that the cancer had returned in the same place, and had also spread to her liver and adrenal gland.
She began a course of chemotherapy for the next 15 months, whilst also receiving community care from a Macmillan nurse. During one visit, the Macmillan nurse mentioned the possibility of Janine attending the St Leonard’s Hospice Sunflower Centre drop-in on a Friday, suggesting it may be a good opportunity to learn more about what was on offer, both for her and for her family.
Janine had been introduced to St Leonard’s Hospice before, when she had visited a friend on the In-patient Unit. “I knew very early on that this was where I wanted to come – it was very clear in my head. I wasn’t even worried about it. Even then, I felt quite positive. I was more worried about my family, I was fearful for my teenage son, my mum, my partner and my friends – I think I used that worry though to focus my mind and focus on putting things in place. I was very clear about what was important to me.”
The Sunflower Centre at St Leonard’s Hospice is an out-patient service, offering a range of help and support for patients affected by life-limiting illnesses, as well their families and carers. The primary focus is on emotional, social, and spiritual support to manage symptoms, and allow time and space for relaxation. It helped right from the very start: “I first attended with mum in May 2015. When we first arrived, I had all these things whirring around in my head. The only way I can describe it is it was like I’d done a big shop at the supermarket and was ladened down with all these heavy bags. We were greeted by Carol in the Sunflower Centre and instantly it was like these bags were being taken away. It was like receiving a big cuddle. And I felt that way every time I entered the building. You just feel scooped up, like someone has their arm around you.”
Soon she was attending every Friday, accompanied by members of her family, her friends or her partner Jane, who saw that it wasn’t just a great help to Janine, but to the people around her. “Sometimes I would just be sitting quietly in a side room, and a nurse or volunteer would ALWAYS come in and ask “How are YOU?” And you can just talk openly which makes a huge difference.”
Jane found it positive to meet other carers too. “I was asking myself “Should I be feeling this way?” and you feel guilty, but talking to other people in a similar position put me at ease and helped me feel normal again. I felt that if I ever wanted support I could have it. And they had Janine making all sorts. One time she made a silk scarf for her mum and it was lovely – she had a pinny on and a big smile on her face. I hadn’t seen her smile like that in a long time.”
Janine, who would never have described herself as being particularly creative, found it really helpful to focus on something other than her illness. “I didn’t even realise I could do this sort of stuff. It gives you something else to think about. And I was happy to be making things that people will be able to treasure, like the scarves. Your head can just be so full. It’s easy to get lost in your diagnosis. As a patient you sometimes feel as though you’re thinking at 100mph, but at the Sunflower Centre you can do meditation, Reiki, massage, reflexology – all these things help you relax and just take time to be yourself. And it wasn’t just available to me; it was available to my family too. I was carrying a lot of tension in my shoulders, and complementary therapy helped massively with that. In fact everything they’ve ever done has been helpful and positive.”
Being diagnosed with kidney cancer, particularly as a young woman, was difficult; however she found that speaking to people of a similar age at the Sunflower Centre was a big help, even if they had a different diagnosis. She made friends, many of which she still keeps in touch with today.
Janine started attending the Sunflower Centre at a very interesting time in its history. The Hospice itself opened in 1985, primarily as a Day Care service and, shortly afterwards, the In-patient Unit was opened. Over the years the In-patient Unit has been developed and expanded a number of times to meet changing needs however the Day Care structure had not changed. Day Care was remodelled at the end of 2015 and in January 2016 the Sunflower Centre was opened.
Janine attended the Sunflower Centre during this transitional period. “It’s been lovely to watch the Sunflower Centre grow and go from strength to strength. The staff there have helped with all aspects of our life, and they have listened – really listened. We’ve met some fantastic people there.”
After starting to regularly the Friday drop-in sessions, Janine began attending the Sunflower Centre’s newly established Relaxation and Re-enablement (R&R) day on a Wednesday. This is a nurse-led service providing social interaction, therapies, carer respite and peer support to help maintain independence and quality of life.
The impact on Janine was huge. “No matter how ill I was, on a Wednesday I would get up and go to the Sunflower Centre, and I enjoyed it. Even if I didn’t really do anything, maybe just sleep, at least it got me out of the house. And that’s the beauty – if you don’t want to talk, you don’t have to. You can get involved with what’s going on but you don’t have to. It was just very much a home away from home right from the start. It came at a time when I was feeling very vulnerable so feeling safe is massive. I always came home with bounce. I felt instantly comfortable and safe which also helped to put my family at ease.”
But Janine started to feel like she was further along in her story than her family and friends. “I was heading one way and they were still playing catch up. They were on a different page to me completely and I found that difficult to understand at first. I became very driven and practical about it all, and very open about dying and planning for my death. I didn’t realise at the time how these conversations were impacting on my family – it was tough for them to hear. Jonathan helped get everyone on the same page and just wanted to put things right. They helped us see things from each other’s perspective.”
Janine and Jane’s relationship was under strain too. “Janine and I went through a bit of a bad patch. We were struggling, it was stressful. I mentioned this to Ruth in the Sunflower Centre and the day after, Jonathan phoned us to see how they could help, maybe by just sitting down with us to help us get on the same page. Talk about going the extra mile! Janine also had a real issue with eating at one stage which really worried all of us. She was losing weight. But she always ate at the Sunflower Centre, sometimes a three course meal! Even if she wasn’t eating much at home it was so reassuring knowing she was having a good meal on a Wednesday.”
Janine was also starting to struggle more with her mobility at home, as her and Jane’s bedroom is on the top floor in the loft conversion. They had a stair lift fitted but still getting up that final set of stairs was a struggle. “I had to move my bedroom to the first floor and I became almost reclusive with it. I didn’t want to talk to anyone; I just stayed in that room with those four walls. I felt like I’d become disconnected, but I still managed to attend the Sunflower Centre. It got worse when we realised that the second line of treatment wasn’t working. I just didn’t feel anything. I’ve always been quite an emotional person but I felt really disconnected from myself, and also those I care about. It was awful.”
Throughout October 2017, Janine got really poorly. She was admitted to the St Leonard’s Hospice In-patient Unit on Saturday 4th November in lots of pain. She had been self-managing her pain and symptoms with support and guidance from her doctor and the Macmillan nurse but was struggling to get on top of the pain. “I was always scared of taking too much pain medication so I don’t think I was taking enough. I could only sleep for 90mins at a time. The pain was waking me up and I was needing to take more medication so I was incredibly sleep deprived as well. I was a mess really. I was traumatised. Before my diagnosis I’d never been poorly. I had my wisdom tooth out at the hospital when I was young, but I’ve always hated injections and taking any type of medication. I have had to overcome so many fears, and I still am doing, but being at the Hospice is the safest I have ever felt. They’ve got a ‘way’ here. You don’t feel like a number, you feel like a person again.
“I felt listened to straight away. They listened to how I wanted to be cared for. The way staff put things across and explain things to you has helped with my anxiety. Not only do they explain what they’re doing when they’re caring for you – they explain why. It made me feel like I’d regained some control. The nurses have got to know me now and can now spot when I’m feeling anxious. It’s like team work and I feel part of that team and part of the decision-making. With my illness I’ve had to give up a lot so it’s really important for me to feel a part of things again.”
It has been a comfort to them both that Jane has been able to stay with Janine in her room on the In-patient Unit, and that Janine’s dog, Milo, has been able to stay too. “I had no idea Milo would be able to stay with me. He would’ve just fretted at home, and I would’ve been worried about him. It made me feel so much better. He’s made himself right at home here, and he’s a big hit with all of the nurses!”
Jane and Janine met in February 2014, just over a year before Janine’s initial diagnosis. Staff members at the Hospice had known for a while that it was their intention to get married. “We’d talked about getting married, and had even started making some plans. We’d looked at venues but we hadn’t picked a date or anything. There came a time when that was quite hard to talk about as we’d have to broach some difficult subjects.”
Just a few days into Janine’s admission onto the In-patient Unit, one of the doctors at the Hospice suggested they start thinking about it sooner rather than later. When it was suggested that they get married at the Hospice just 24 hours later, it was quite a surprise to them both, and at first Jane was panic-stricken at the thought of planning a wedding alone at such short notice. But the Hospice staff planned every detail of the wedding, leaving the couple to enjoy the occasion. “They had sorted it all. I was overwhelmed. I just cried and cried. They’d just lifted a weight off my shoulders again. All I had to think about was Janine. They ran us through everything they’d planned and it was just perfect. It was overwhelming that everyone pulled together and went out of their way to try and make our day – which they did. It was meant to be that it was here at the Hospice.”
Janine agrees that when it came to it she wouldn’t have wanted it any other way. “We wanted people at the wedding who had been a part of our journey; those that have ridden this mad rollercoaster with us. We’d talked about inviting some Hospice staff to the wedding, and asking Jonathan, the Sunflower Centre manager, to bless the wedding for us. But it was fate that it was here. It was perfect. The Sunflower Centre in particular feels like a part of our extended family now so it meant so much that the staff could be there. We didn’t think the wedding was going to happen at one point, but they just make things happen.”
Reflecting on her Hospice experience so far, Janine feels very lucky to have come through the Sunflower Centre and to have involved St Leonard’s Hospice so early on in her journey. “The Hospice has played the biggest part in my illness. I have 1000% trust in all the staff here. Coming through the Sunflower Centre, I feel like I have even more people behind me supporting me. The Hospice is full of earth angels; I just can’t thank them enough. It’s like someone has gone along and sprinkled fairy dust on them all. They just have this warmth. Even though I’m a patient I feel a part of St Leonard’s Hospice. I can’t explain how strong my feelings are for this place. It’s a home from home, but safer. I feel so emotionally connected to them. It’s not just a place you come to die; it’s so much more than that. People don’t realise.”