Louie is now three and half year old, and is a bright and energetic little man, he understands a lot about mummy from photographs and family talking about her but it is uncertain if he has grasped what has happened. He knows mummy has died and he knows mummy is no longer here, and says it because he's been told it, yet I don't think he quite realises what it all means, but then why should he at three years old?

The final straw was when the cancer spread to the liver, the linings of the lung and various other places.

Conversations

There's an enormous fight within to survive, particularly when you have a young child and a loved partner along with a home which had fulfilled her desires, all of which provides a mentality that makes the survival feeling even stronger, therefore anything that revolved around or was perceived to be adverse, was not taken well. Conversations between Sarah and the hospice nurse were very understanding of her attitude and concentrated on the immediate issues, such as pain management, and working with Sarah regarding her thoughts about current issues rather than the future. 

Towards the end of Sarah’s life, Dr Hattie visited her to have the conversation about the realities of her situation, Sarah quickly brought the conversation to a close and said, ‘look I don't want to talk about it, I'm too tired today to talk about it’. Sarah would not consider having a conversation which considered the ultimate outcome, and at no point was she ever willing to accept the position, even during the latter stages of her life.

Having a conversation about her circumstances wasn't something she was willing to consider, and you have to respect how people want to manage that situation, because no one can manage that for people. Everyone has to walk their own path at the end, and the path that you decide to walk is your own, whether all knowing or not knowing. Secretively Sarah probably did know, but whether she wanted to express that or even delve into that area is a choice; and Sarah didn't.

Hospice

During Sarah’s last lengthy visit to hospital, Dr Hattie became very familiar with her circumstances and spent a lot of time with her in the hospital. Subsequently when Sarah was allowed home, she visited Sarah and communicated her view that Sarah was deteriorating very quickly, and the decision was taken to move her to the hospice. This transpired to be absolutely the right decision and although she didn't survive very long the care was excellent. She arrived there about 4pm on a Sunday and she died at 6pm the following night. Sarah was only there for a short period of time but the people there were brilliant.

There is no prescriptive way of dealing with something of this nature and I was very much open to all recommendations, therefore the suggestion by Sue from family support to include Louie and allow him to visit Sarah was not something that had been considered but transpired to be a heartwarming occasion. So he was included in everything, he was not excluded for the reasons of being a young child, but he was included for being Sarah’s little boy. The visit by Louie to the hospice to see Sarah was emotional for all staff and family. 

Sarah was pretty much unconscious from Sunday evening, but we took comfort from the suggestion that hearing is one of the last senses to leave a person when they die therefore Louie talking to mummy, we felt provided her with some comfort. It’s good for him, it's good for everybody else there with him, and if she could hear anything then it’s a great comfort; that would have been wonderful for her. 

I was naïve and probably misunderstood the operational practice of hospices and I generally held a view they were just places where older people went in latter stages of life. I think it's important to try and change that message. The offering they provide is so much more than end of life care, it's a lot wider than that; there are many stages to the care they can provide, it's not just a one staged approach. The facility is lovely and totally different to the feel of a hospital. Hospitals do a good job but individuals exist around them. The hospice seems to be the other way around; they exist around the individuals.

When you lose somebody as inspirational as Sarah, you want to try and do your best for that person. A moment in time is reached when there is a realisation that Sarah’s life was ebbing away and all you can do is provide for her needs in what time she has left, and if other people are going to go through that, I would like to try and repay what St Helena provided to us so somebody else has the same benefit. 

I have a certain perspective on things; when you can't find a reason not to do something, you should do it. Therefore when considering the need for bereavement counselling, I was not convinced regarding the outcome. But I then took the view that what harm can it do actually talking and opening up? During the first week session I noted the group age range was quite great and I questioned myself about how easy or how difficult that might be in my circumstance and my comparable age profile, but the following week, a chap a similar age to me turned up with nearly an identical story. There are only very limited people that can understand the scenario that you face and the numerous issues you deal with being on your own on a daily basis, so that was really good to make the connection that person.

Ultimately it was actually a good group of people. It was obviously structured but I could see that the counsellor Chris let the discussion go where it needed to for people's benefit, and it went on all sorts of journeys about different people and I learned a lot. You can get ahead of yourself because it's a long journey. It isn't just the first three months, four months, six months or however long. It's much longer, emotions range through peaks and troughs. Sentiments increase when you experience the firsts, for example the first wedding anniversary, Louie’s birthday or a place visited, and the list is endless. The emotions on a daily basis are like a yo-yo; some days you’re OK and then other days it brings you back down to a low ebb. The counselling provides an understanding that you are on a longer journey, and that you can't just expect to turn up to eight sessions and expect the feeling of grief will be conquered. Counselling provides a channel for a few coping strategies and also to know there are other people in similar circumstances and therefore you are not alone.

I participated in the UTS Ultra Marathon with my brother Rob and my sister in law Gina.

The reason for this particular event is because when my brother was involved last year, we resolved to have a family holiday at the same time nearby. A few days after the run we all went up Snowdon, and Sarah, with half a lung, climbed it and upon reaching the summit exclaimed ‘I am in charge of my own life’ providing an indication of her resourcefulness. Following that achievement, she then walked all the way down which took approximately four hours and an accomplishment for any individual. Sarah’s triumph was just truly amazing considering that at the time she was on heavy chemotherapy, yet she was determined to take it on. 

Hence the reason for my motivation and the whole scenario makes a lot of sense to me and to enjoy those memories of Sarah as well as contributing to the hospice. A year ago, Sarah climbed Snowdon on roughly the same weekend and she really enjoyed the holiday, for that reason, I thought actually it’s a poignant thing to try and link everything together and raise a donation to the hospice.

As in the previous year, my whole family is involved, Sarah's mum and dad are in the support group, as well as some friends. It's making an event out of it for us to ensure Sarah’s memory is maintained and we hope we can raise some money in the process for a worthy cause in her name.

I was incredibly naïve about hospices and I would like to encourage others to understand how these facilities operate, particularly in view of the lack of government funding and I hope that my efforts in the name of Sarah provide further knowledge, then it can only be for the better. All you want at that last stage of your life is to be comfortable and feel valued, that's all you can ask for, and St Helena provides that. Most people will never have to worry about it, but for the odd person that does, if they know that the hospice exists then that would be a blessing. 

I have a feeling of wanting to do something for all the care and attention that was provided to Sarah, and the Ultra is a very small price to pay. I think in all these situations you feel that if you can do something, then why not?  

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