David ' Interview 08

Age at interview: 58

Brief Outline:

Ten years ago David's father was diagnosed with lung cancer and he died three years later. David now works voluntarily for several national cancer organisations and charities representing carer and patient perspectives.

Background:

David is married with one grown up child. He is a retired research consultant and volunteers for several national cancer organisations and charities. Ethnic background' White British.

More about me...

Ten years ago David’s father was diagnosed with lung cancer and at the time it was decided that it was too late to operate. David describes how this came as a real shock to their family, especially because his father had never smoked. He was treated with radiotherapy, steroids and painkillers and eventually died three years later.

As a family they understood he was likely to die from the lung cancer and David explains how they coped with this by taking it day by day. David describes his father as ‘brilliant’ at dealing with his illness as he managed to push it to one side and focus on other things. David’s father had always been physically independent and so when his mobility deteriorated he was too proud to ask for, or accept help. His pride also meant he often downplayed the effects of his illness. This meant it was often difficult for David and the family to be involved with his care and they were not always informed of the effects of his illness. David felt frustrated that more care was not provided for his father, although he understands that his father may not have communicated his needs, he feels that health professionals should have recognised this and provided some care at home.

David’s father was in a palliative care ward of a hospital before he died. Although the family knew he was going to die they did not expect it to happen when it did as they were told he would deteriorate more towards the end. No one was with David’s father when he died because it was unexpected and so David feels there are still some questions which remain unanswered, such as how peaceful his death was.

David’s father’s death has impacted massively on his life. He now works voluntarily with several national cancer organisations and charities, chairing groups, speaking at meetings and being involved in research. David represents the carer and patient perspective and feels that using his experiences to help others has helped him grieve for his father. David was unaware of support groups before his father died and feels this knowledge would have been more useful earlier on. David advises other people in similar situations to have the confidence to question health professionals’ opinions and to research the options which are available.
 

After his father's death, David became a patient carer advocate. He is now advising various cancer research projects from a carer's perspective.

You spoke briefly about your life since your dad’s death. Would you like to say a little bit more about how it has shaped your..?

About a year after my father died I was invited to a conference at a local university where patients and carers of cancer patients were talking about their involvement in cancer research and I was intrigued that as well as having some input to the way that cancer services were delivered that patients and carers could have some influence on the research world. So I went along to this conference with my wife and we joined the local group of patient carers who were involved in cancer research because we were interested really and that we hoped that our experiences would help to put something back that would influence things in the future for, for future patients and carers.

As a result of joining that local group I’ve since then been drawn into groups at local levels and at national levels within the country and that has led to me being chair of a couple of these groups, one national, one local group and being involved in several, many research projects around the country aimed at helping to improve the lot of cancer patients by offering them evidence-based, the best evidence-based clinical therapies.

It’s made a massive difference to my way of life. In fact it’s pretty much become almost a fulltime job and I spend most of my time now travelling around the country attending meetings, getting involved in research projects. I’ve even actually travelled internationally recently as well. I’ve been to a symposium. I took part in a symposium at the British Embassy in Tokyo recently and I’ve just come back from Washington DC in the United States of America where I visited the National Cancer Institute to give some input to a session about rare cancer research at the National Cancer Institute in Maryland. So it’s made a massive difference to my life.

What I hope is that people like myself who are patient carer advocates working in the cancer research world can help to make a difference to enhance the research as much as possible to just add the patient carer point of view to that research, to make sure that the kind of questions that are being asked in the research world are the important questions from the patient carer point of view. Is the question, the right question? Are the inclusion/exclusion criteria in the research project the right ones? Is the information that’s been given to patients and carers of the correct standard and is it meaningful and is it useful? And getting involved in that way has helped me to come to terms with what happened to my father and to make sure that there’s some benefit as a result of his experience that can be passed on.
 

David advises others to seek out the best possible information about the treatments available. Taking part in research trials may be an option.

If I were to meet someone in a similar situation to the one I was in 10 years ago I would advise them to seek out information, the best information that they can get. Ask questions of the people who are offering them help at all times and be absolutely certain that the options are the best ones.

It’s a difficult position to do, to be in because, you know, if there’s a research question to be answered then obviously the research needs to be carried out to find that answer. But I mean one of the, one of the things I would suggest is that patients in that position would ask about research and whether or not there’s an option for somebody with a certain illness to be part of an actual research project to find out the best treatment available. It takes a long time to answer clinical research questions but if patients can do that I think, I think that it can offer patients going through a difficult journey some, it can encourage them that they are, what they are doing by accepting being part of a research project will help future generations of sufferers with the same problem.

So it’s, it would really be; ‘Don’t bury your head in the sand. Ask the questions. Get the best information that you can’ And you know, ‘Just be sure that either you, the patient or your loved one, the person that you’re caring for is being given the best treatment that they can. Don’t always assume that that’s the case.’ Although I am assured that the NHS people are working, to provide the best care that they can, that they are able to do so. But just be certain for yourself that that’s the case.
 

David was not the main carer of his father and he sometimes found it hard to know how to help without interfering and when he should make the journey to his parents' home.

But towards the end of his illness, as I said, there were times when we had to offer, give him some very personal help for him to be able to cope and at the end of his life that became more and more difficult particularly with him being in and out of hospital three or four times and eventually into a palliative care centre at the local hospital where he eventually died. Those revolving door scenarios in and out of institutions that was very, very difficult times.

For you or?

Obviously mainly difficult for my father and for my mother but it was difficult then for the other family members to manage around their needs. Not always wanting to interfere, realising that we weren’t the primary carers for his illness caused some sort of problems.

Can you speak a little more about that?

I mean some of the care problem were a result of distance in geography and the fact that we didn’t live particularly near. We, I guess in sort of global terms five or six miles which is how far away we were from my dad isn’t a massive distance. It’s not as if we were living in Australia or Canada or something like that but it’s still, it’s still a distance that you’ve got to, you know, it takes half an hour or an hour if you’re in the middle of the night to make that journey to get out of bed and to get dressed. And as I was saying my parents were loath to ask us to get up and jump every time they needed some help. Obviously we offered to help in any way, shape or form that we could but it wasn’t always easy to, to glean from my mum and dad exactly what position they were in, how ill my father was.
 

David wishes his mum or the family had attended his father's death. Not being there has left many unanswered questions for him.

So the fact that he ended up dying in a hospice setting it wasn’t actually a hospice it was a palliative care centre at a hospital but it’s different from a hospital ward, it’s a different setting to that. That may not have been what my dad thought that he wanted but probably, probably for the care that he needed at the end that was the best place for him.

Did you personally feel that’s what..?

I think looking back now I wouldn’t have changed that situation. The really difficult part of that was the fact that my father died when there were none of his family with him and that was, that was traumatic for everybody around that situation. My mum didn’t feel that she’d said goodbye to my dad properly. We left him one night at the centre and he died during the night. And when we came back early next morning it… Well when they phoned us up from, at home, it was obvious then that he’d gone. Yeah.

Was that unsatisfactory do you think?

Definitely for my mother and I think that we as children would have felt better if my mum had been there with him because it would have made her feel differently. We were never quite sure exactly how and where and why and when he’d died, that there have been question marks about that. And it’s something my mum is still aware of and I am. And it, it wasn’t the end, the end of my father’s life was far from being the sort of, what you’d imagine as being perfect. But there are still questions to be asked about it really because we weren’t there. We weren’t actually there so we don’t know how peaceful or how calm it was for him. And wish everybody, you know, when you’ve got to die that they could have a peaceful death but it’s a question mark for us, we’re not sure.
 

David found the physical expressions of grief difficult. He didn't weep when his dad died or at his funeral, but has done his grieving in private since then. He was not offered counselling.

And I mean the physical expression of emotion, that’s the breaking down in tears or that kind of expression I don’t think I ever did that and it was difficult even on the day that my dad died for that to happen. I realised at this point that my dad had died and that, I don’t know. I didn’t weep then. I’m not sure I did at all, not at the funeral either. And it may be that I’ve done my grieving in private after then.

Obviously it’s something that you’re aware of every day of your life that you’ve lost your father and that your mother is living on her own and that she is having to cope with things. But, but actually it’s the physical expression of that grieving is something that’s been very difficult. And I think I’ve worked things out for myself by getting involved in work around cancer research in which I’ve tried to do something about, what, you know, use my father’s experiences to help other people who might end up in that sort of situation but that’s dealing. That would mainly be dealing with the illness, yeah and treating the illness but the emotions around that, that’s a much more difficult area to work on. We’ve never been offered counselling but I guess that we’ve been able to manage without counselling that may be part of the way that we are, as a family are made up anyway.