And then obviously throughout your treatment on the, I was going to say on a daily basis, it wasn’t a daily basis, but every second or third day when you were in hospital you had a blood test.

But because of the Hickman line it was very simple, you know, injection or syringe into the Hickman line, extract whatever blood they needed and send them off and a couple of hours later the results came through. And at that point that was one of the things that when you’re going through it you know all about your blood counts, you know all about, all the figures you need to know about you’re on top of. You actually become quite nerdy about it and it’s only once it’s all finished you go, ‘Well I suppose it was important at the time but can I remember it all now? No not really.

I knew that my red blood cells needed to be up at this level and my whites needed to be below that level, and the neutrophils need to be at this level, and until I got to a neutrophil count of one I wasn’t going to get out of the hospital so I needed to work it out to get those up.

Yes, and she came with me when I had the needle into my, bone marrow taken, that’s right, I forget sometimes, and she was holding my hand, so that was okay.

So they just gave you a local anaesthetic on the skin for that? No other sedation to make you relax and sleepy?

No.

But it was painless?

Yes, I was amazed. She had the instruments covered up and I wasn’t going to look, and you lay on your side and she said, You’ll just feel a pushing and a pulling. And that’s all you did. I was amazed, because first of all she took one bit out and then they took a little bit of bone out afterwards. And all there was on the skin was a pin prick and there was no bruise at all. Because I thought, God, I hope it’s all right because I’ve got to have another one at the end of the treatment. But yeah, it was fine.

So the pushing and the pulling wasn’t too bad at all?

No, and all you got next day was a just a slight ache. That was all. It was nothing bad. Nothing you couldn’t cope with. I was amazed. I thought I’d be scraped off the ceiling.

You mentioned having bone marrow samples taken and it’s not very pleasant. Can you tell me a bit more about that?

Yes, you’re sort of turned over on to your tum and then they dig into you to get a sample from your bone marrow. And they give you a local anaesthetic but they can’t anaesthetise the bone. So when it goes in through the flesh it’s not too bad, but then when it actually hits the bone it’s just very uncomfortable. But we’re talking about a minute of discomfort, it’s not somethingI think I’ve had three and I have to say the doctors vary. You know, one I remember was not, well, I was a difficult patient for her anyway, let’s put it like that. The other two were, I was, and that was the first one I had as well, and I was dreading the next, second and third and they weren’t quite as bad, or maybe I just got used to it. But it’s not something you look forward to. So that was a bit unpleasant.

And when I got the bone marrow test, which was literally the next day, they’d rehydrated me, I was on saline drips and all sorts of other things overnight. Antibiotics as well. And they came in the next day and before they did the bone marrow they were absolutely excellent. They came in, they explained what a bone marrow was, how it usually feels, what they would do before it, what I would maybe feel during it, all that sort of stuff. They were very, very, very informative. Very good.

And I was just like, I just want to know what this is. I just want to know and that’s it. So took the bone marrow and it certainly wasn’t as distressing as I thought it was going to be. Again I think the heavy doses of painkillers I was on probably helped because as my treatment went on I got more distressed about them. But certainly that first time it wasn’t what I expected it to be. I was quite relieved it was all over and done with very quickly.

But then I had a bone marrow
Biopsy.

Biopsy.

Yeah, what was that like?

God, that was terrifying, honestly. I mean I’m frightened of needles at the best of times but unfortunately I’d seen this needle on the trolley. God, I nearly jumped up and ran. I tell you it must have been that length. I was absolutely O. But I mean it’s very, very uncomfortable but it’s not painful. The only thing I did find out, it may just have been psychological, I don’t know, but when they were drawing the bone marrow out I felt as if my leg was going like that. Now it might not have been, I don’t know, but it just felt like that. But apart from that, as I say, I’ve had no bad experiences at all.

So presumably they gave you a local anaesthetic on the skin for that?

Yeah, yeah.

Have you had to have any more of those ones?

Yes, I’ve had another one done. When he mentioned it I said, Oh God, here we go He was awfully nice. A young doctor and he said to me, so I said, I’m very sorry. I’m not here. I’m sitting on the side of the banks of the river Loire with a glass of red wine in my hand. I don’t know who you are and I don’t care Andhe just started laughing and just got on with it. But fortunately in that respect I do have that ability just to be not where I am, to be somewhere else, especially when the nasty things are happening like that. My good woman, she’ll tell you what I’m like with needles. I am terrible. One comes near I’m like that.

That sounds like a really good strategy if you can do that.

Aye, well it is. It works wonders for me.

No, I think initially, when I was again on this clinical trial and I was having bone marrow aspirates, which are again things that people love doing under local anaesthetic and I’d just like a few doctors and nurses to have them once under local anaesthetic, and then maybe they’d take a different view. And you can have a good experience with them and you can have a really bad experience with them, and I was giving samples of bone marrow aspirate for probably a year after I’d left hospital for the clinical trial.

But they became very difficult because when they cause you a problem, when you have a lot of discomfort with them it takes a lot of to go and have the next one. And I had some bad experiences with them so I talked to my consultant and I said, Well look, I think I’ve had enough. And even though towards the end I was being sedated with them, I think it’s just one of those things. I haven’t actually met anybody who says, Oh whoopee, how pleased I am today I’m going to go and have a bone marrow aspirate. Everybody I’ve spoken to hates them and they are unpleasant.

Did the sedation make a significant difference?

Yes providing they’re done properly, yeah. And I would certainly say to people, do ask if you can have sedation, you know, don’t be afraid to ask to have sedation because it does make a big difference. Apparently you’re conscious all the time but it takes your short term memory away so you don’t actually remember having it done at all. And I had the last six of mine I had all under sedation and it made it a lot easier. I felt that after three or four experiences of it and that horrible sensation, not only of the pressure when they drill into your bone, but that sucking sensation. it’s indescribably horrible.

And I think you have to be very brave to keep going and having those willingly, and so the more support you can have to make it easier, I think the better. And it’s interesting because some of the doctors, you know, because you get a different doctor doing it every time you go there as an out-patient and they say, Oh it’s okay, I’m really good at doing these. And I’m thinking, Yeah, you’re just like the guy who put my Hickman line in. You’ve probably never had one yourself. They can be done well, obviously, but they are an unpleasant procedure. So I’d vote for sedation every time.

But I remember, you know, before PCR’s* where it’s just a matter of a blood test and they can tell your counts, I used to have my bone marrow taken out, which was very painful. Every time I went for my sort of meeting, my appointment at the hospital just to get the counts, they would have to extract some of the bone marrow, and that was really painful and very, very uncomfortable. So I used to always ask to be sedated rather than be locally anaesthetised before they could actually extract it. So that was very, very uncomfortable but since then it’s been fantastic because now it’s only a blood test.

Tell me all the graphic detail.

Well, they would take it out of the lower back and, I can’t remember what it’s called, if there’s a specific term for that, but anyway they would locally anaesthetise the region and they would put me on my side and they would insert a huge thick big needle. And although I wouldn’t exactly feel pain as such but I could feel the needle inside of me and poking around and them extracting the, you know, the whole feeling of something being sucked out of my system. And that was awful, absolutely awful. It was, you know, I couldn’t bear it so I just said to them, Listen, it’s probably best if you just sedate me so I’m not aware of this whole thing And they were quite reluctant to do that but eventually they agreed. And so the last few times I’ve had it it’s been that but, you know, PCR’s* have been a real blessing so that’s been great. Yes.

So what difference does the sedation make to you?

Well, I mean usually I would take time off work and go in for my appointments and that would really, you know, being sedated would really take the, it would, I wouldn’t have been any good even if I went back to work. It would take me a while to sort of get out of it and be awake and alert, but it would still make me, you know, leave me feeling quite groggy, a little bit unsteady on my feet. So even if I did go back to work, which I did, but then it, I wasn’t any good at actually doing anything, so I would just sit there until five thirty and then leave. So but with this it’s really, it’s very, with the PCRs* it’s just going in, a couple of hours, you know, it’s normal blood sample collection and then you’re fine, there’s no impact on the body at all. So and then of course there would be a feeling of soreness where the needle has gone in and your back has been punctured. So that feeling of soreness will probably last for a few days, so it wasn’t hugely pleasant.

So even though you felt groggy after having your sedation and it would interfere with your day’s work, you would still prefer to have the sedation to have your bone marrow taken out than have it without?

Yes, I mean just the discomfort of having the needle poke around and that was absolutely awful. I couldn’t bear it, so I just preferred sedation. So, yes it was good.

*PCR’ Polymerase Chain Reaction. A test whichlooks for genetic changes in cells. It can find one leukaemia cell among a million normal cells.