Why did you need radiotherapy on your head?

Because with leukaemia it’s in the fluid that goes around your brain. Any medicines that you have specifically for disease, like chemotherapy, stop at your brain because it will kill your brain, if you have medicines and it goes up and around your brain, the radiotherapy was to treat it around the brain because leukaemia is notorious, if it comes back it can enter the brain, so obviously to stop that, kill the cells off by using radiotherapy.

So did they say you had got it in your brain?

No. It was clear but it was preventative for me. So that was quite lucky.

Then you had to wear a mask.

Yeah.

Tell me about the mask.

Yeah. It was a clear mask and you had to lie on the bed flat and you had to be strapped to the bed with the mask. I mean it sounds horrendous but it wasn’t actually that bad. The mask is see-through, it’s completely clear and you’re only there for a matter of ten minutes. And I found it quite relaxing, so long as you just relax and just think it’s going to be over in a minute that’s fine.

So which bit of your head was the mask shielding? Was it your face?

it’s not a shield, it’s to hold your head still.

Ah

So when the radiotherapy goes into the brain it’s in the specific spot they want it to.

And then almost like immediately after that I then had radiotherapy. And I found the radiotherapy quite distressing mainly because I had to have a plastic mask fitted over my face, and I can get quite claustrophobic anyway, so even just getting the mould done I found quite difficult. And the first day they fitted the mask on to the machine for the radiotherapy, that was just horrible. But I have to say I got used to it very, very quickly. They promised me chocolate, so I’ll do anything for chocolate. So after the first few times it was fine. You knew what to expect and it certainly wasn’t anywhere near as scary. But during that time I was very sick.

What was it like having the total body irradiation?

Didn’t feel anything basically. Just lying on a table in a certain position, your arm up for ten minutes one side and then they come in, turned the table round, ten minutes the other side. That was it. Twice a day. At the beginning the Monday, Tuesday was okay but by Wednesday I was starting to feel tired because I was having go half eight in the morning and half three in the afternoon to the cancer unit for the radiation. And I was getting really tired by the end of it. Feeling very sick as well. Having to wear a mask to go from the hospital to the cancer unit. They had a taxi for me but I had to wear a mask over my face and it just made me feel even more sick. I don’t know why. But yeah, just really, really tired. It was like an effort actually to get out of my bed and get ready.

And then I had to go down to the radiotherapy unit and this was the most painless thing that they did to me. But I remember laying there sobbing. I felt I was like a caged in animal. Obviously they said the only way they could explain it to me was, The thickest part of your body is your head. So with radiotherapy we need to make everything the same thickness. So they laid me down on this slab and I just felt like as a caged animal. They put foam around my neck, underneath my arms, across my waist, underneath my legs. All I had on was my underwear and this sheet over me and so my body was the same thickness all the way down, and there I was in this room and it was so cold. I just remember laying on the bed with my arms flat, staring up at the ceiling and shivering with cold. And the tears were just streaming down my face because I just felt so caged in. And I had to lay perfectly still and I could see these, out of the corner of my eye I could see these red rays going all over the place and they called it TBI, total body irradiation.

And I had to do that along with the chemotherapy twice a day, could have been three times a day, every day. And it was the most painless thing they did to me, but the most awful thing because of the way it was.