Thereafter, what happened was that we took our lead and the clinicians took their lead from Tim in terms of how much he wanted to know. Now, his view was that he wanted to be very, very clear about the treatment that was right for him, to be absolutely clear about what needed to be done, what he needed to do because he wanted to, you know, to look after himself as much as he could in terms of, you know, taking pills and oral treatment etcetera. But he didn’t want to sort of know all the ins and outs and [Name] and I sort of talked about this on our own early on and we decided that we would respect that. What we didn’t want to do was get into a situation where we knew a lot more than he did and we were then faced with, you know, the dilemma, Do we tell him When he wanted to know, you know, if he was asking questions, then it was absolutely, you know, right, we felt, to talk about it and to find out to get answers. And, you know, doctors were then very helpful but what we didn’t do was, was try and put any pressure on him to want to know more than he wanted to wanted to know.

After he died you know, I got very involved we got very involved in fundraising. I got very involved with Leukaemia Lymphoma Research and I kind of realised afterwards how much we might have known. So, you know, I and there’s a, you know, there’s a real, I wouldn’t have done it any differently, I don’t think, because I, you know, I really felt and feel that the patient has to want to know and it and, it’s and it’s right. And he was twenty years old, you know, he wasn’t a, an eight year old or a ten year old.

Do you, this time of care, put a strain on, on the family?

Yes, it did. It did, our elder son, [Name], was living away from home, at the time, and had been for a had been for a few years and we’d always managed to sort of see him on a regular see him on a regular basis, spend time with him, talk to him regularly. And that became very difficult and I think both [my wife] and I were very conscious that that we were neglecting [our son] and whilst we, you know, we were sure that he understood we still felt, as parents, that that wasn’t good, that that we weren’t seeing him. And, you know, he got he came to see Tim as often as he could do but that wasn’t that that wasn’t always easy. So that was one thing.

I think with [my wife] and me it kind of magnifies everything I think would be the best way that I could describe it. I think the pressure that you feel under, the constant nagging sort of aching pressure that never goes away means that you lose your temper more quickly. And ironically, I think, you know, we found that, whilst we’d try and be understanding with other people, it was almost like we couldn’t keep on putting an act with each other. So there were times when, and I know we did lose our temper more regularly with each other than we than we would have done, but equally, there were times when it was on each other that we could look to for comfort. So again it was it was kind of bitter it was kind of bittersweet.

And I think we worked pretty well in as much as [my wife] stopping work being there all the time for Tim, me sort of charging around all over the place but being getting there supporting there, making sure I saw Tim pretty much every day when he was when he was when he was in hospital. He kind of gave us space as well. I think I think certainly the times when he was, and there was the three of us were sort of, you know, were in a maybe in a room for four or five days, as happened on a couple of occasions, well, there’s been three occasions. I think that’s when the pressure kind of really, really builds and it’s kind of hard to keep things together properly.

And then, eventually, he got transferred to a regional hospital, where he was treated, and that was the first time, and this so this is this is three and a half weeks after I brought him home and almost a week since he’d been in hospital, we eventually, get told that he’s got leukaemia.

So we, we had that horrible time right at the start. We knew something was wrong. It was obviously serious. He was getting worse. He was very weak by the end, he could hardly stand up on his own, you know, as a as a very fit and active twenty year old. And, and people were kind of skirting around it but they wouldn’t actually say anything, because they didn’t know for certain. And, and so, you know, that wasn’t that wasn’t good and I think certainly, from my point of view, this is because cancer is so rare in young people, it, it takes far too long to diagnose it really and we experienced that.