Chris and Sarah's Story

Chris and Sarah say being in the Hospice was like "being wrapped in a great big duvet".

Builder and father-of-three, Chris Cole, from Berkhamsted, was 51 when out of the blue he was diagnosed with mesothelioma or cancer of the lining of the lung in March 2018.

In October 2019, following major surgery and chemotherapy, he was referred by his GP to our Spring Centre for a holistic assessment with the aim of building his fitness and reducing his fatigue.

 His wife, Sarah, also 51, has also received help from our Family Support Team. They describe the Hospice as ‘like being wrapped in a great big duvet.’

Here Chris tells their story....

“I’d lost a bit of weight and had a few pains in my back and my rib cage but I thought it was just my hiatus hernia playing up again. But after five days of tests at Sligo Hospital in Ireland, where we were living at the time, they broke the bad news. I had mesothelioma. We were in total shock and disbelief - I’d never even heard of it.

I was referred to Professor Donna Eaton, an internationally trained thoracic and lung transplant surgeon at the Mater Hospital in Dublin and when I first saw her at the end of April 2018, she gave me about six weeks to live.

But I started chemo straight away and after two or three rounds, she didn’t recognise me. I put on weight, my hair grew, I wasn’t ill once. The only negative side-effect was fatigue.

The most immediate life-threatening tumour that was pushing on my jugular was sizably reduced. The other three tumours had joined together, but growth then stopped. 

In August 2018, Professor Eaton and her team performed a 14-hour pleurectomy, stripping away the lining of my right lung and some of the lung itself, including four tumours. They removed it all - 5kg in total.

I made a good recovery and was up, walking and home within six days and after three more rounds of chemo just to finish the course and before winter set in, we decided to move back to our home in Berkhamsted, near the support of family and friends and to be with our children, Patrick, 23, Jessica, 21, and Lucy, 18.

Where we’d been living in County Leitrim was very rural and even though the care was superb, it was a two-hour trip to Sligo Hospital. We didn’t want to feel that isolated.

We knew there was a very high probability that at some point the cancer was going to come back but everything was stable and I just decided to take every day as it came. I was able to go out for a few pints now and again and go to a few football matches with my mates.

But obviously the effects of surgery and chemo had left me a bit depleted and I still wasn’t brilliantly fit. I was keen to work on that, but physically as well as mentally, Dr Manton at my surgery in Manor Street thought The Hospice of St Francis might be able to help. We knew it was going to come back and it would be good to have people in place to be able to talk to.

I saw Caroline Wheeldon, the Hospice’s Community Clinical Nurse Specialist team lead, for an assessment and she was brilliant. We sat and chatted about everything I’d been through, how I felt and what I wanted to achieve and she didn’t look at the clock once. It was so nice not to feel rushed.

Obviously we spoke mainly about me but then she turned to Sarah and said, ‘and how are you?’ It was the first time anyone had asked Sarah about her and she just burst into tears. She has lots of friends and family she can talk to but no medical professional had shown such concern and Sarah found it so helpful just to say things out loud.

We both felt it was really, really positive and that the Hospice was the right place for me to be to start to build up my strength.

Between October and Christmas, the Hospice mainly supported me with physical exercise. I was in a period of denial and didn’t want support at the time, but was slowly coaxed into talking more and realising I needed support to work on my mental well-being, which was every bit as important as my physical health - in some respects more so. 

I had weekly visits from Sue and Louise, two of the Hospice’s community nurses, and they became my advocates, liaising with my GP and the district nurse and giving help and support wherever it was needed.

My breathing was up and down and just before Christmas I ended up in Watford Hospital because I couldn’t breathe properly. Every other day, Sue or Louise would call to see how I was and to let me know they were thinking about me, and in January I was well enough to start going to the Hospice’s outpatient Spring Centre for courses as well as to see Sue or Louise.

I started attending the weekly Balance and Strength course run by Manisha and Marie-Jeanne, two of the Hospice’s physiotherapists. Every week until May I’d be here without fail, determined to build up my stamina and strength. The first time I came, it was hard just walking down the corridor, but little by little, we’d increase the distances, build on the exercises - some of which I’d do at home - and I could notice the difference.  Within a few weeks, I was using leg weights no problem. Socially it was nice too to meet other people - often younger people like me, who I could relate to.

I also did the Hospice’s Adapted Tai Chi classes for three months outside in the Hospice gardens, which were absolutely brilliant and helped me physically as well as mentally. While you were doing it, you didn’t feel as though you were doing much but they really helped make me breathe differently, and at the end you’d do a bit of mindfulness where you’d gather your thoughts. It was so calming, I’d nearly be asleep. I’d go home feeling really positive.

I did try the HOPE (Help Overcoming Problems Effectively) course but I was beginning to feel not quite so well and I think mentally I wasn’t in the right place.

Since March, every four weeks I’ve been meeting Dr Sharon Chadwick, the Hospice’s Palliative Care Consultant and Medical Director, and she’s been brilliant. As soon as I met her she took a weight off my shoulders.

She wanted to listen and seemed to care and has really helped with my medication too, putting me a lower dose of the slow-release Oramorph, which has made me feel a lot more comfortable, and adjusting my anti-sickness drugs and steroids, which has all helped to manage my pain and control my symptoms.

Since I’ve been on morphine, I’ve had problems with going to the loo regularly so in April, when Barbara from the Hospice’s education team asked me if I’d be interested in taking part in some research the Hospice is involved with on opioid-induced constipation, I was really happy to help.

It’s a six-week study and although it sounds silly, it was great to be able to talk to someone about it and it wasn’t at all embarrassing. Barbara would call me to check if I’d been to the loo – even on a Saturday – and they’d try different drugs to help balance my medication so I no longer had a problem. It gave me something else to focus on.

In June though, I noticed I was no longer able to manage long walks around the town and get up a few little hills. I’d got quite breathless again and was in pain. My arm, neck and throat swelled up and my stomach became bloated. I knew something wasn’t right but we didn’t know what so I was admitted to Watford Hospital again where they did an ultrasound scan, but Sharon pushed for a full CT scan because it needed further investigation.

The results showed that I had a blood clot in my neck and that the cancer was back - it had spread to the lining of my stomach and peritoneum. Of course it wasn’t unexpected, but it was hard. In the A&E ward with no curtains and no privacy, suddenly a doctor’s asking you if you’ve had a conversation about resuscitation. I know now that it was because of the blood clot but there’s a time and a place for conversations like that.

Days later we saw Sharon, who was really sensitive and very compassionate without being overly emotional and we had a very different conversation with her and felt very safe talking to her.

We’ve always been open and honest with the children from day one – they’ve had their tears and their moments but it’s much harder if you go round the houses. The sooner you know and can do things as a family and start making memories, the better and what they want is what’s best for me.

Sharon was so supportive, but pragmatic, and we talked about resuscitation, where I want to be at the end, which is at our canal-side home in Brook Lane with my family around me. We talked about making memories and she urged us to do lots of things but to make them local – so our plans to go to Cornwall at the end of the month are out, but a picnic at Ashridge is fine.

Towards the end of June I was admitted to the Hospice for a procedure to drain the fluid from my stomach and all I want is to get my mobility back so we can make the most of every day. I’m taking every day as it comes and if I feel like doing something, we’ll do it – within reason!

The Hospice is such a special place. It’s so calming being here, everyone is so friendly and helpful and I can look out on my patio at the birdfeeder. We know we can ring any time to ask questions or talk about any concerns and the Hospice is always there for us – there’s never been a moment when we’ve felt we’re being rushed or we’re taking up too much time.

Sarah is receiving support from the Carers’ support team, which is reassuring. At first she felt it was very much my place but as I’ve become less well, the support she’s had from Claire in the team has been absolutely amazing.  She says just to be able to come and have space to talk, offload and a sounding board to get suggestions about things like the Money Advice Unit, is fantastic.

She was even able to talk to Claire about how to handle the occasional surprising reactions of our children and be reassured that it was normal and that she should just keep being the mum she always has been – it was nice for her to know that she was getting it right. Having that support and support for the family should they need it when I’m no longer around means a lot to us both.

If I had to sum the Hospice up, I’d say it’s like a great big duvet. It makes you feel so secure and whatever the circumstance, you feel the staff who work there have got your back. I’ve never encountered an organisation like it and I feel extremely lucky.” 

Sadly, Chris passed away peacefully in a hospice bed on 23rd July 2019 with Sarah and his family and friends around him.