And how many hours do you sit there with the infusion?

Usually it’s half an hour, half an hour. And I’ve got a portacath.

Can you explain to me what a portacath is?

[Laughs] well, I’m not medically trained so I might not be telling you exactly right. But once again I wasn’t told about this, I found out from another patient who said, Oh what you want is a portacat, because my veins are very deep seated and I was getting myself into a terrible state wondering if the nurse would be able to find my vein and oh it was dreadful. And I had some very unpleasant experiences, you know, while they were trying to find a vein. And then the vein would collapse. So having talked to somebody else who was on a different cancer treatment to me she said, Oh, what you want is a portacat. She said, don’t let them put one of these others i, she said, which is all expose. She said, Just have one of those she said, and you can even swim with it So that’s what I’ve had. And what they do is they insert a little valve underneath your skin and this leads directly into your vein so I can have the intravenous chemotherapy and they just if you like, plug me in really. You can’t use it for a CT scan because apparently the people in the CT department aren’t specialised to use this portacath then, I still have to have it, the vein found conventionally. But it means, it’s saved my veins
… and it means that when I do have to have blood taken obviously weekly, excuse me, my veins are in a fairly good nick considering I’ve had so much chemo, chemotherapy, excuse me.

Is the valve covered with anything? Or is it just
No, just my skin. No, nothing.

Hmm, brilliant.

Nothing After I
How do they get to it?

Well they, if you’ve, it’s like a little lump and that leads directly into the vein and they access it with a needle.

Oh I see, through that little bit of skin.

That’s right, yes.

…on the Sunday evening I’d had an, an aching leg and so when I went on Monday they discovered that I’d got a DVT in the back of my knee. I thought, I suspected as much, you know, it just didn’t feel right and it was quite painful. And then on the Sunday evening my ankle really swelled up badly. So on Monday when I saw the consultant he, he was very funny actually, he literally physically got me by the hand and marched me up [laughs] to have a, you know, to see the other consultant who would scan it. And he stood by and waited while they, and they showed it me, it was just behind the knee.

Is that a result of the chemotherapy?

I don’t know. Obviously I understand that you are more vulnerablebut nobody had told me this until yesterday, then my nurse said to me, Oh well of course this is one of these side effects so we’re going to put you on some Clexane So now, and, Here you are, there’s a bag of Clexane and you’ve got to inject yourself So I said, Ooh Anyway, she was very good and she took me through the procedure and so that’s what I have to do.

Is that into your arm?

No, into my tummy.

Oh.

Yes. So, and it’s immediately improved the leg. The swelling has gone down immediately. But they were sort of quite sort of, you know, casual about it really and said, Well, you know, just gentle exercise and, you know, but don’t sort of lie with your leg up too much. But you know, just take it eas. And that’s, that’s, all they’ve told me to do. So I went out and bought some sports socks
Did they tell you to wear a special sock?

No [laughs]. But I thought, Well, perhaps that’s what you d. So I went out and bought them from the sports shop and I’ve put one on this leg and it’s OK. But I suppose really in a way I’ve, well some people might think I’m blinkered and I haven’t, you know, but I feel I’m dealing with it in the way that I have to deal with it.

But the one thing that I did do and it was, I didn’t realise was I did actually have a massage. Nobody told me not to have a full body, body massage. I had a full body, body massage and was incredibly illthe next day. And when I mentioned it to the consultant he said, Oh no, you mustn’t do that

Why? Why does that happen? Do you know?

No.

No, I don’t. I’ve never heard of it.

Because you, you are on chemotherapy he said, you shouldn’t have a full body massage

Oh.

Presumably it makes things whizz round you quicker, I don’t, I just don’t know. But I know I felt very, very ill the next day. I felt like a wet rag. I, I could hardly get out of bed. My limbs ached and I felt really quite poorly.

Oh.

Hmm.

That’s interesting.

Yes. So I had sort of quite a bad reaction.

I felt that I’d pulled a muscle in the left hand side of my body, and I’d been doing quite a lot of gardening and I’d been lifting a compost heap and so the pain in the side of my body seemed sort of uncomfortable. And I went to my GP and she said, Yes, I think you’ve pulled a muscl. She examined me and said, Take some paracetamo. And that was it.

Where was the pain exactly?

In the left hand side of my rib really, just under my rib.

And you know, the pain seemed to go away. In the summer the pain returned and I’d been watering the garden with heavy watering cans and once again went to my GP because the pain got worse, particularly at night when I was lying down. And she said, Well, you know, you’ve obviously been over-doing things a little bi and she examined me very carefully and said, Well, you know, I think you have pulled a muscle and just take some paracetamol and, you know, that should do the tric. Well, it didn’t and the pain got worse. So we were away in the summer, and I returned in the September to see her and said, you know, This pain is not going awa.

It wasn’t a sharp pain, it was just an uncomfortable pain in my side and was particularly troublesome when I went to bed at night.

And how did they do the biopsy?

They gave me a light anaesthetic.

But did they do it through an endoscopy?

Yes. Yes. And I actually had a sort of very violent reaction. I was, I’ve never experienced pain like it. It was absolutely horrendous and they whipped me straight up to a ward, and kept me there for three days.

Really?

Hmm.

Was that, the pain was where they’d done the biopsy?

With the pain. With the pain yes.

Oh dear.

Hm.

How awful.

But in some ways that gave me time to come to terms with everything.