I’ve had 104 infusions of chemo of various types and having been told by the first consultant that I only had four months to live I’m now seven years on.

I have no surface veins left to take the chemo so I’ve been given this year a Hickman line. And this I fought to the bitter end until in the end the doctor said “I am sorry Maureen you just do not have any veins left,” wed got down to using the small ones in my feet. He said “We have got to give you a Hickman line, theres no other way.” I strongly objected to this, being the vain creature that I am I didn’t want plastic tubes hanging from my boob. But I could see that it was the right course to take so I agreed.

Could you explain for other people what a Hickman line is?

Yes, when they have used all your surface veins they tap into a deeper vein within the body and they bring, it’s very difficult, it’s quite embarrassing, they tap into a deeper vein nearer the heart and they bring it out and you have two sort of plastic tubes hanging down from the incision that they’ve made.

And they can use that?

And they can use that as often as they like. And I hate to own up to it but it is so much easier. It’s not uncomfortable, it’s just unsightly, but then I don’t walk around with my top off. When they inserted the Hickman line I was awake for the whole procedure. They put a screen in front of my face so I couldn’t see what they were doing and it was just no problem whatsoever, it really, really wasn’t. So if there is anyone that has been, they have suggested they have a Hickman line it’s not as frightening as it sounds and it makes life so much easier, especially now that I have to have blood transfusions which take up to nine hours, they can just plug in straight away and theres no problems.

And they actually gave me anti sickness pills, eighteen of which I was supposed to take and a nurse said, ‘If you can do without some of those try your best to because they’re steroids and they’re not very good for you. But she didn’t tell me until the second time round so the first time, the first chemo I’d taken them all, the second one I only took half of them and fared very well;

The next few chemos I only took the odd one now and again and fared very well. The last two chemos on purpose I didn’t take a single tablet and that was the only time, I was never sick but I felt nausea and I just said to myself, ‘You will not be sick, ignore it, you will not be sick ignore it, you will be not be sick ignore it. And when I felt nauseous which may have been for three hours a day for about ten days it wasn’t too nice a feeling. But that was my own choice, did I want the tablets which were bad for me or did I want the nausea, I chose to have the nausea. And I chose to ignore it in terms of being sick, it wasn’t quite so easy, you can’t ignore feeling sick, you just feel sick all the time, that was awful. But I chose to have that instead of the tablets.

Had your hair fallen out by this stage?

It started after about five treatments. Suddenly, I was seeing a lot of hair on my coat collar. I didn’t realise I was losing it (laughs), but it was’ The whole structure of the hair changed, so it was more prone to breaking. So I was seeing short hair on the back of the collar, and I could clean it off in the morning and go home in the evening, and it would be back. So it was fairly dramatic once it started. I suppose hair loss is one of the best-known side effects of chemotherapy, because most people associate that. What I didn’t realise, because I also knew hair loss could happen – and in fact it did, it had started – Pardon me. But what I didn’t realise is that you also lose the hair from inside the nose, and the ears, and on your arms and your legs. I’d just assumed it was on top of your head! (Laughs). And I couldn’t really afford to lose a lot, I was already fairly thin on top, but .

And how did it make you feel, losing hair?

I didn’t particularly like it. I’m a bit vain, so I would have preferred to have kept what I thought were my good looks, but I didn’t like the look of me as I began to go bald; But it doesn’t seem to bother anybody else, so I discussed it with my wife, and she said shed still love me even if I had no hair; I remember saying to her, ‘What if I have no hair on my body either?’ and she said, ‘Oh that’s okay, I’ll still love you. And I said, ‘Well, what if I’ve got no money?’ She said, ‘Well that’s different!’ (Laughs) She ‘s a bit of a shopaholic, is my wife.

(Laughs)

So once I knew it didn’t bother other people, then I didn’t bother about it. It hasn’t worried me, losing hair.

It tends to, the symptoms basically are one of a very, very bad dose of influenza, a very bad dose of influenza and it is horrible. It not only affects, but the thing is not only does it affect you like that it also affects your taste buds. Our taste completely changes. Now I like, I used to like, you notice I say used to like red wine, even, excuse me, even to-date I’m still not drinking red wine like I used to drink red wine. I have to drink white wine which I don’t mind but I’d prefer red wine but it still doesn’t taste the same. Now that’s because of the chemotherapy. Other things; blackcurrant jam which I love; no taste at all. Now you know how sweet blackcurrant jam is, absolutely no taste.

So it’s had a permanent effect on your taste buds?

No, no, no just temporary while you’re on the chemo. It’s only the wine that’s had the longer effect. Now what I think with the wine is, I know it’s a silly thing to talk about (laughs) but I think it’s the tannin in the wine that does it, in red wine, I think it’s the tannin that does it in the red wine and that’s what’s caused it. But now my taste is nearly back to normal again.

When I came home after having the chemotherapy I was very, very sick with the chemo and my local doctor came up because I was very violently sick. I moved to upstairs, constantly in bed. When the doctor came in he gave us a wee box here [points to chest] and fed it into my chest with an anti sickness and morphine. And the nurses came in every day and changed, put more morphine in and it helped greatly.

That’s good and what other side effects did you have apart from the feelings of sickness and hair loss?

I started getting like pins and needles in my fingers and my feet and my toes and once I started getting the right medication like the morphine and anti sickness and that it cleared away itself, it was no problem and it worked for me and it could work for you.

How many cycles of chemotherapy did you have?

I had six. Six session of chemo, every three weeks yes.

Did you have any side effects with the chemo?

I had one, once I think it was the fourth session and I got what they call thrush. Uh, its just all white in your mouth and it you know, you just, you lose all your taste-buds and everything but they gave me the right medication and within four days it was gone and that’s the only thing I suffered from. I didn’t have no sickness, obviously my hair fell out. I got very tired towards the end of the first week which, but I knew all this because they’d explained to me right from the beginning I knew exactly what was happening to me so I wasn’t frightened, you know there was no need to be frightened or anything like that.

What were your feelings when your hair fell out?

It didn’t really bother me because I thought it was a small price to pay. You know, if this was going to save me so no it didn’t bother me.

Well as I say I think the worst side effects are the tiredness and the fatigue and the mouth ulcers. It’s so painful, theres nothing that eases the pain and it has still left me, I mean alright I’m very grateful that I’m still alive and everything you know but it does come at a price. I still do have effects, sort of side effects with my mouth, I have a dry mouth and I have problems still with my insides and that you know.

But I think it’s just the sheer tiredness and not being able to do anything and it’s so frustrating because you want to get out of bed and it isn’t as though you just want to lay there but you just can’t do it, it’s just a physical impossibility because you are so weary. I mean alright I lost my hair within the first couple of weeks but there again may be if I’d have been younger it wouldve bothered me more but that was never really a concern to me because I thought well you know were trying to save my life here, if the worst comes to the worst I can wear a wig if it never grows back you know. So that was never a particular issue although I didn’t like wearing wigs actually I did try and, they do supply you with them but I never found it comfy so I didn’t bother, I just used to wear a turban.

But I would say the side effects, the worst one is the mouth ulcers. And of course you’ve no control over bodily functions, you know I mean you’re going to the loo, it just pours out of you, you know diarrhoea and what have you. I can always remember on occasion, which was about the only time that I ever really felt like giving up, and someone had given me some money for the Christmas and so my husband had been and bought me a new dressing gown and slippers and I was wearing it and I just couldn’t get to the loo in time and it just poured out of me. And oh it was, I was in a right state. When my husband walked in and I just, I was just sort of crying and saying “Oh this is it, I’ve had enough, I can’t carry on like this,” you know. And he was very, very calm and collected and just cleaned me up and sorted me out and I was fine again then you know. That’s about the only time really that I ever felt that I couldn’t carry on with it. But yes, some people do, I have heard people say that you know it is too much, that they would never, ever go through it again.

When it got after the fourth lot of chemotherapy I had another really bad reaction, well I didn’t actually I felt absolutely fine but I’d been and had the last lot of chemo and then two weeks later I went, you had to go back for a blood test you know because it does really badly affect your blood. And they said that I’d no platelets, I’d no red cells, my white cells weren’t performing, if I had, you know if I had a nosebleed I could probably bleed to death because it were just like water running through my veins but I felt fine. And I’d been and had another blood transfusion that day and they said “We want to bring you in, just to be on the safe side you know and give you some antibiotics.” In other words they were preventing an infection starting.