So I went back to the hospital the following morning and had a CT scan done which showed that it had progressed to stage III, at least stage III at that stage. The following day I was sent to the [name] for a biopsy, bone marrow tests and a lumbar puncture to confirm what stage the disease was at. So that day I was allowed to go home but over the weekend they were getting increasingly worried about the size of a mass on my chest. So on Easter Sunday I came back in and I was given steroids just to calm the tumour down before it, they had the absolute diagnosis.

So then I went back to be seen in clinic on the Tuesday and this was really the day when we had the first glimmer of hope because we were told that it was Hodgkin’s. It was only stage III not IV which they thought it may have been. And my oncologist explained exactly what would happen. How long the treatment would be but he was also very, very hopeful about the outcome. And that was the day where we really thought well it’s going to take a while but well do it and well get through it.

When you said, you emphasised the stage III as opposed to stage IV. Can you expand a little bit about what it means to be, to have a stage III?

Ok. Well this four stages of a disease. Stage I of Hodgkin’s is where just a few lymph nodes are infected with the disease. So you might have a few swellings around your neck with little or no symptoms. Stage II would involve one or more masses above or below the diaphragm and then Stage III would involve two or more masses above and below the diaphragm. Stage IV is where it’s spread to other parts of the body, for example the brain. And that was really why I had the bone marrow tests and the lumbar puncture done to show that they were both clear.

So, like I say, when I, when I first suspected there was summat not quite right, would be summat like March last year [2003] and for me to actually get, well, to get stomach cramps was September time, and when I went for me IV scan which was four weeks after which would be October, and then it would be MRI scan which was actually January time. And I got sent for a bone scan in March, took two weeks for that to come back and then went for another bone scan on my hip four weeks afterwards. Yeah.

So it was a long?

It was quite a long period before we actually figured anything out. We were just stabbing in the dark because we couldn’t work out what was causing me to limp quite badly.

And what happened at the hospital?

We went in and saw the chap – he, again he probably thought it was a cyst more than anything, so again I wasn’t too worried. He asked me a few questions, you know, has it changed size or anything? Is it painful? Had a look at it. And that was in the morning and he said right well do something about it, and in the afternoon I was in the surgery having it taken out. So, you know, he must have thought it was something. But got it done, got it out and went home that day, and then waited, for the results. So ‘

And how long it took for the results to come back?

It was quite a while. They weren’t particularly sure what it was. I think they came back saying it was a sarcoma. Pretty quickly – it was within a month – and then they were just trying to identify which particular type. So that took a while, because it was apparently quite a rare one. It was probably about three months before they decided on a treatment for it.

And I remember sitting down in this room, after waiting for a very long time in the waiting room, sitting down with the gentleman who’d done the CT scan, and his sort of assistant, and they sat me down, and they said, ‘Right. You, it’s a big lump, and it’s either a lymphoma, or a massive organised haematoma. Were not entirely sure, so were going to take a biopsy. And again, I didn’t ask what a lymphoma was. I don’t know what was going through my head, because usually I’m, I like to be in control of whatever’s going on, but I just didn’t want to know. I, I thought, maybe, again, ‘If I ignore it, it’s going to go away. But I knew that, somehow, a massive organised haematoma, whatever that was, was going to be better than lymphoma, so I was lying in bed every night, going, ‘Please, let it be a massive organised haematoma.

So I went in for the biopsy, and a biopsy is where they put a needle into, and take a core, a very, very small core, out of the area where they think the tumour is, and then they can do tests on that core of material, and test what it is. And you can’t then move for a little while after you’ve had the biopsy, because they’re, they’re worried about bleeding and that kind of thing, so I was lying in the hospital bed, and they eventually let me go at about 12 at night, and they, they told my Mum that I’m not allowed to go out, I’m not allowed to do anything, so that at that first time, I just went back into school the next day, and I was a little bit sore, but I was okay and just got on with everything. And I wasn’t, I didn’t tell anyone I’d had that done, because I knew that there was something definitely wrong now [laughs].

Yes, ok, this will be gory. What they do is they don’t sedate you any more because apparently that is dangerous [slight laugh]. I was rather disappointed to find that out. And they, they stick a needle into your I suppose it’s sort of into your upper buttock and, into the bone, and, which is relatively painful, and they just extract some blood from the middle of it which is, which is your bone marrow which is the area that produces all the blood I’m, so I’m told, and they also take, take other slides from, from it and that just. And they also give you gas and the thing they give to pregnant women if you’re, to ease your discomfort, but it’s quite an uncomfortable thing but it just leaves a very small mark after a few days.

How long does the procedure last?

Oh God.

Do you remember?

It seems to last for hours [slight laugh].

You just want to forget about it?

Traumatised [smiling].

Can you explain what these tests involve?

Yeah sure, I think I had the CT scan first and that basically involved going to the hospital and you had to, you basically have to get, I remember not having, not being able to eat for kind of 24 hours before and basically turning up and it was a pretty horrific experience at first really. You kind of get used to them over time but they’re still, you know, they’re still not [laughing] my ideal way of spending a day you kind of have to drink this fluid drink which they tell you tastes like orange squash but it doesn’t [laughs]. And you have to get through kind of four cups in like over two hours and it’s, it’s like a big litre and you’re just kind of forcing it down and it, it doesn’t taste particularly nice. It’s not the worst experience you’ll ever have in life but it’s not the greatest drink you’ll ever have either. So I remember kind of forcing that down and then they basically put an injection into you and they inject this kind of, it may, iodine I think it is and that kind of all shows up the areas of cells which are affected by the Hodgkin’s, by the disease when, when you get passed through this kind of, it’s like a big kind of round doughnut basically I suppose. You kind of come through, you just lie down on this kind of bench and it just passes you through slowly and you kind of breathe through. And the worst, the worst part of the whole thing basically is when they put this injection into you, it kind of feels like you’ve wet yourself in a funny kind of way, you get this kind of funny warm feeling down by your groin and it, it, it’s quite, ‘cos you’re not really sure if you have or you haven’t it’s kind of, the embarrassment factor of it is quite bizarre. And each time you kind of, you know you haven’t but you [laughs] still question it because of the feeling it’s like it’s so strange so it’s more of an embarrassment feature than any kind of physical pain. It’s just, you, you don’t really expect it and you kind of think, oh have I or haven’t I? You kind of see the nurses approach you and you think, oh my God don’t check [laughter] so it’s, it’s kind of bizarre, bizarre kind of feeling when this injection goes into you. But other than that it’s, it’s pretty harmless really, and that’s the CT scan and that, that gives you a kind of rough feeling of where, where the illness lies sort of on your chest and on your pelvis and you know, it basically runs through the whole body.

Can you explain to us what a PET scan involves for the people who might?

Right ok. Well PET scan, first of all it stands for Positron Emission Tomography so it was something that at the time was in clinical trials in, so it. My consultant wasn’t sure if it was going to be conclusive. But what it involves is first of all taking a small dose of Valium to relax all your muscles and then an injection of a glucose which, which after an hour you then go through the scanner. It looks exactly the same as a CT scanner although it does take a bit longer. Whereas you can have a CT scan in about twenty-five minutes I was in the scanner two hours but the advantage is that you don’t have to hold your breath or anything silly like that. You would just lie there and go to sleep if you want to and it’s totally painless. And it doesn’t make any noises or anything. And what it looks at is how cells are respiring and if some cells are respiring quicker than others suggests that they may be cancerous. So yeah but theres not many, not many places that have PET scanners in Britain are there, great shortage.

So how long ago did you have the PET scan?

I had my PET scan two months after I finished treatment so it was the Christmas of 2001. Yeah so that was five years ago really, four years ago.

You talked a little bit about the tests can you explain more?

I had the, the ophthalmologist, the specialist eye doctor, he looked at my eyes and did various tests including something called visual fields which looked at how I saw the world as it were in different parts of my vision to see really what, what I could see when I was looking straight forward. And you do this in a simple test, its just you sit there with your face in front of a, a machine and it flicks little lights on and off around your, your periphery vision, your, your main sight and so on and from that you get a picture of what vision you do actually have. And this showed that my vision was quite impaired. And he also noticed that I had quite pale discs at the back of my eyes and this is used by specialists who understand and to see how, how healthy the eyes are. And he saw that they, they weren’t as they should be and recommended that I have an MRI which consequently I did.

The lumbar puncture, you had local anaesthetic or general?

At first I had generals, I had mostly generals but a couple of times I did have, have them locally because I found that I didn’t, I really didn’t like the anaesthetic it used to make feel quite nauseous when I came round. So someone suggested that, that I ought to try having it done with a local anaesthetic. Because this, I was talking to another girl on the ward and she was saying that she couldn’t have anaesthetics so she had hers locally.

With local. They take you in to the, well first you’re sat waiting for what seems like ages, although it seems longer when you’ve got it with a general anesthetic because they won’t let you eat anything. And you sort of, you go in to the room and theres the trolley laid out with a sheet on it and they ask you to lie down and sort of, sort of curl up with your, sort of with your knees up lying on this bed. And then sort of your mum will sit facing you so that you can talk to her, and theres, theres lots of people around, but they’re all behind you, so you can’t see them.

So there was just mum and this other nurse there and then you sort of feel a sharp pain in your lower back when they put the needle in and that would, then they put the local anaesthetic in that. But I never quite saw the point of that because they’ve already just done the most painful bit of putting the needle in. And then you, then you just sort of feel them poking around as they’re attaching the syringes and stuff, then they pull it out and it’s all done.

Did you have lumbar punctures?

Oh yeah, yeah I had lumbar punctures and I also had intrathecal chemotherapies in the spine.

How many of those?

I think I had two of those. Yeah they weren’t under full general anaesthetic, they were happy gas, nitrous oxide I think [chuckles].

Can you explain, explain to us what happens during the lumbar puncture or intra-thecal operations?

Oh yeah the happy gas operations were, they were actually quite fun [laughs]. Because no I it’s a, its quite weird because it makes you feel really sort of, it makes you say the silliest things and you don’t really feel as if you’re there but no you know I can’t remember a great deal about the lumbar punctures but I don’t remember sort of feeling any pain afterwards or anything. Except sometimes I got headaches after, a couple of days after them because it drains spinal fluid obviously so it affects you know how you feel in general and it gave me you know quite nasty headaches but that was all I got from those, really.