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

So the only symptoms you’d had so far was the bleeding?

Was bleeding through the back passage, yeah.

No pain?

No pain, nothing just this bleeding through the back passage.

Had you had any stool, problems with your bowels, your stools?

Yes, it was loose, bit loose and bleeding. It could happen at any time of the day but.

As I said, they weren’t overly concerned about it. I just thought it would be something that would pass but, obviously, time between the July to the November, I don’t know, I thought I was fooling myself because I wasn’t a person who wanted to go to the doctor’s for something that I thought was trivial.

So you started to have the problem in July?

In July, yeah.

And you didn’t actually go to the GP?

GP until the around the, I would say the October.

So about a week later, after they operate, two weeks two three weeks after the operation the specialist trials nurse got back to me and said, You’re being put onto trial arm three. Which was the top, I don’t know if you can call it a top, the most extensive treatment.

With the vaccine.

With the vaccine, yes. So that went that was going well and then I think it was, I’ve got a feeling, no, I think it was just around December I started off with a slight allergic reaction to it, but they weren’t overly concerned about it, to these two injections. So they kept it up to go and then it started gradually getting worse again so they started putting piriton, they put the piriton through the drip.

Piriton.

Piriton, yes, to try and bypass these hives that were happening.

You were having some sort of skin reaction.

Yes….I think it was March when, either March or towards the beginning of April, I had these injections and you had to wait an hour to, you can you can go and come back sort of thing but you needed to wait an hour for them to check the site to see what it was like, to see if there was any bad reactions to it. So I went to the, I went to get a coffee.

And I came back up to the clinic. As I was walking back up to the clinic I had to go up these stairs because it was outside, obviously, and I went to, I nearly fell down the stairs. I just started feeling strange, sweaty.

Very strange but I managed to make it up to the clinic. Spoke to the receptionist and said, I’m back to see the nurse. And she said, Okay. Just take a seat. But then she said to me, How are you doing anyway? I said. I got back up to speak to her. I said, I’m doing fine. We’re going great. And then felt like I tumbled, just sort of collapsing and my breathing went laboured. I felt very dizzy so slowly walked down to where this nurse was, who I was supposed to see, and she took hold of my paper work, took me into see the doctor and then I was put onto a bed and was given injections, steroids, obviously, to combat this reaction that I was having, oxygen and bloods taken. I think I ended up staying in the side of the clinic on this bed for another three hours until just everything went down because it was quite scary, scary. Literally, everything was just like it was shutting down.

Did they think that was a side effect of the vaccine.

It was a side effect.

Or the chemotherapy?

This was, they think it was the side effects of the vaccine because, obviously, they need to build them up.

But they didn’t expect it to go to the extent.

How many months had you been having it then?

Oh, nearly twelve months.

So how are you feeling now? Do you have to take any painkillers now?

Now and again I do. Basically, I take a solution, Oramorph because it’s morphine based. I take about two spoons of that if and when needed and I also take the dihydro-codeine, which is like thirty milligrams, little tablets. I also take the chemotherapy tablets

So do you sometimes have pain in your abdomen?

In the abdomen, in there, yes.

Really on this side, basically, where the pancreas is, just behind the back there somewhere.

That’s where the main pain is, sometimes on a Tuesday after treatment. it’s strange because it comes and goes this one and I suppose it’s as the solution is going through your system, sometimes you get pains in the groin area.

Oh.

Which happens or it doesn’t happens. it’s strange [laughs].

Sometimes it’s there and sometimes it’s not. The main other thing is tiredness, just very tired.

But that’s with everything else with cancer it’s just one of those things, you can become tired, quite tired and lethargic but, anyway, my sleeping patterns are a joke. I just go to bed at twelve o’clock and wake three or four times through the night. No pain or anything, just will wake up.

Like last night I went to bed at one and I was awake every hour up to half seven, eight o’clock this morning when I had to get up. You know what I mean, sometimes I’ll just get up and sit downstairs on the computer and do something.

Do you worry about the future?

Yes, always. I try not to but what can you do.

Yes.

Because you know that at the end of the day you’re living on borrowed time, basically.

I don’t know, it’s just well, I’ve lost all interest, basically, but in saying that, without the friends and family around me, you know what I mean, I could easily have gone, Oh, I give up. I don’t want to carry on And I think that’s part of the battle as well if you stay positive, mental attitude.

The family have been brilliant. You know what I mean, but, you know, we grow older together makes us stronger, you know what I mean. And I really had help especially when it comes to the wedding and organising the wedding. We didn’t have a clue.

We wouldn’t have, without my eldest sister we wouldn’t have had. She took the photographs, the cars, the all over she took all over.

Everything?

Yeah, and the best, biggest surprise was the pair I used to work for. I was walking past the office to go to see a relation, my wife and he pulled into the car park so I spoke, was speaking to him. He said, What are you doing So I was just talking generally about health and that. I said, I’m going now He goes, Just hang on a minute And he pulled out this big wad of money and went, Take that I was like, Okay So I didn’t bother counting it in front of him because I thought that would be rude, you know what I mean. I got home and it was almost five hundred pound. I was like, Oh my God

And then what about CT scans? You had CT scans.

Oh, CT scans, lovely things, the polo mint [laughs].

Yes oh, gosh. I must have had now with the treatment, from the start of the treatment I think we’re up to the fifth CT scan, which is due in the next couple of weeks. I’m due another one because they usually do one every three months.

The first one was eight weeks at the start of the treatment. Then it went to twenty weeks and then so on and so on so we’re up to I think we’re on week fifty six, fifty eight now. We’re on somewhere around there and then it’ll be another three months, which is quite good going considering they were saying six to twelve months.

Even though they only say that as a guess, you know what I mean. They can’t, obviously, tell you, you know, You could be here in six to twelve months or you may not be here in six to twelve months So they’ve got to give you some sort of guidance.

And then they took you off the trial.

They took me off the vaccine part of it.

But now they’ve said, because it’s been two or three months since that, when I last spoke to the trials nurse she said, We’re taking, the protocols have changed to this treatment I said, Well, What does that mean She goes, Basically, we took you off the vaccine

So you’re sort of no longer part of the trial Which she’s telling me. Well, if I’m still not part of the trial why am I still getting the chemotherapy and the tablets because as I understand it, if the part stops of the trial you would be offered some other treatment. Well, again it’s changed with I won’t see the doctor now until the third of August.

Whereas I used to have the three weeks treatment then the first week back you’d see the doctor. So now I’m like, well, I don’t know what’s going on. I’ve asked the questions and seemed to be getting the same thing, Oh, the protocol has changed So I’ve asked the Macmillan nurse to see what he can find out.

And he’s tried to find out what’s going on. As I said, I should be due in the next four weeks, a CT scan. it’s not going to happen because I don’t see the doctor now and I don’t see the trials nurse unless he’s, I want to speak to him.