The Macmillan nurse talked through end of life issues, we’ve been able to talk with her honestly about how it might be to feel unwell. But to be honest we met the Macmillan nurse in the hospital and subsequently the Macmillan nurse has visited us here in our home a couple of times. The first time was to talk about the fact that I was now diagnosed with a terminal illness. The second time was to help us with the DLA [Disability Living Allowance] application. But really we were able to say to her, we don’t feel the need to speak to you regularly at this stage because I’m not unwell yet, but I think when I start to feel more unwell then I’ll certainly pick up the phone to her and say, Look things are getting a bit worse, you know, would you come round and see me and let, reassure me that this is normal. That, you know, this is expected maybe

And I feel very reassured that I’ve got a good GP and that the Macmillan nurse is there to talk to, to be honest, and say you know, What is it going to be like to be seriously ill, to be dying? To actually you know be bed bound Or I feel reassured that I can actually ask people you know, What would it feel like to be dying That’s very reassuring to me. To be able to talk to people honestly and frankly about it.

And where have you looked for support? Apart from your family I guess?

Yes I’ve, I’m very lucky sort of with family and friends, sort of very supportive and involved, but the best thing I did was contact the Macmillan nurses, and they’ve been very helpful. Kind of, my company aren’t very considerate and I only get statutory sick pay, which obviously is quite a financial strain.

Gosh.

R’ But the Macmillan nurses sort of went through all the benefits I could be receiving, and sort of claimed them on my behalf, so they’ve been very good. I recommend people
Can you remember what, can you remember what those benefits are called? Because other people might not know about those.

There’s my, I get a disability benefit of £70 a week. And a carers benefit of £50 a week. And that, this was actually back dated from when, and she put in the claim for me. So that makes quite a lot of difference.

Mm. And that’s not means tested is it?

No, not at all.

And how did you find the Macmillan nurses? Did somebody put you in touch with them?

I was told kind of to get in contact with them sort of, that they were the best people to kind of go through. And we just picked up the forms and there’s a local one, fairly close to where I live, where they’re based, and we contact them and they came out to the house and interviewed me and my wife and kind of discussed our needs and what they could do for us. And they’ve kept in contact with us, they sort of, even though they’ve got the benefit’s sorted out, they’ve phoned up. They get reports on how my progress is going.

And I have to say that the, the team I dealt with in oncology have been absolutely superb in terms of the information that I’ve had. Their ability to answer questions. And one of the most important people in my treatment has been my specialist nurse, because obviously one of the things that happens when you’re undergoing treatment is that you sometimes feel less well than you want to. And you don’t quite know whether that’s serious or not. And the great advantage of the specialist nurse is they’re used to dealing with people who are having your treatment. And, certainly I found that they’re absolutely invaluable to me, and I think to the doctors too, in terms of being able to reassure you when there isn’t anything very serious, but also expediting things quickly if you’re not feeling well, and saying, Oh come on in, I’ll arrange for you to see someone today Or, Why don’t you come into clinic in a couple of day’s time

So you can just ring them direct?

Absolutely. And so I have a specialist nurse who I use, who I ring on the telephone. And the other thing I do is use e-mail. Because sometimes when they’re busy during the day, I can just fire off an e-mail first thing in the morning, saying, I’ve been feeling a bit nauseous or whatever it is, should I worry about it And they can come back to me when it’s an appropriate moment in their day. So that’s worked very well indeed.

And I think that more and more hospitals are having specialist nurses as part of the team, and certainly it’s worked brilliantly for me, in terms of just, just reassuring me that what I’m going through is normal. And as I’ll come on and talk about in a moment, when things haven’t been going quite so well, making sure that I got very speedy treatment.

So anyway we got this discharge after the four weeks. Everything went well.

Came home to stay with my mum because obviously, we had stairs so it was easier for me to stay here than me try to climb stairs. So mum helped out and had the children to come and stay here and my wife and that they all came as well, sisters, my brother was around, good family support, friends and so on. And then with the job I was working in community the community care, the district nurses who came out to remove the staples, were actually people who I help them look after the… And one of the guys who I was quite good friends with turned up on the Saturday morning to take the staples out and that. I’ve come to see so and so

Come to what?

Come to see come to see me but he didn’t realise it was actually me who he was coming to see.

Oh, I see.

So he was like, Hello, mate. What happened I said, Well, here I am still fighting, slow, you know, just unfortunately it’s me you’ve come to see

So we had a good chat then and that made it easier as well because, obviously, I’ve known him from the past with working in the community and that so I we had a good little chat and he took the staples out. And then, two or three weeks later, the district nurses were there for support as well as making sure the wounds were clean and no problems. And they said, Well, there’s nothing else we can really do for you now. Is there anything you want? If there are any problems in the future, just give us a call I said, Well, instead of discharging me from yourselves why don’t you just come out every two weeks or I can phone you every two weeks and give me an update on how things was And the team leader said, Yeah, that’s no problem

So we’re still in contact from say February last year to now, they come out every three months now or if I need anything, I can also ring them.

Because my motto is, If you’ve got something in place and you know you will need it in future, why discharge yourself from it