Heather's story

My name’s Heather and I was diagnosed with acinic cell of the parotid gland.

 

What was the process of being diagnosed like for you? 

In about 2004, I think it was, I noticed a small lump. just under here. Much the same as when your glands come up when you have a cold. And in fact, I think that's what I was told by the doctor that it was just a swollen gland — more than once.

And then it wasn't until I’d moved and saw a different doctor and said I had this lump. And they said “Oh, okay, we'll get it checked out”. 

So after some scans and biopsy, it was diagnosed as acinic cell, and I had surgery to remove it,  just the lump, it was just part of the gland that was removed.

And then some years later, probably about six years later maybe, I noticed some little bumps, sort of in the cheek and I think under here as well from what I remember.

And kind of went through the process again, and it still took about almost 18 months for them to confirm that it was a recurrence of acinic cell. 

And I don't think it helped because I changed, I was seeing one doctor and then was referred to somebody else so then they had to send on results and sort of start the process again almost. So it took quite a long time to actually diagnose.

 

How did your treatment progress?

So for the second lot of treatment I had, the whole parotid gland was removed. It was a little bit more, you know the surgery was a bit more extensive than the first time.

And also going in through scar tissue was a bit more tricky for the surgeon to see what was what. So the whole gland was removed, and some neck muscle, and some lymph nodes.

And all of which, well the lymph nodes and the muscle, what turned out not to be affected so that was good in hadn’t spread anywhere. And then I had a course of radiotherapy for six weeks, which was quite a challenge in many ways.

 

Tell us about your radiotherapy treatment

So the radiotherapy, unfortunately, fell in the six weeks holidays that my children were off school for. And my husband is very busy at work, so I had to find ways of commuting into London from Essex. 

And fortunately, I had lots of friends and family members who were able to help with looking after the children. And in fact they had a great holiday, because they had day trips to London.

I’d palm them off with a friend, go and get my treatment, and then join them for the rest of the day.

But the actual treatment itself, so for about two weeks, it was fine. I maybe got a little bit of redness and itchiness in my skin. And then after that, the side effects started kicking in.

Like first of all my taste, went a bit odd. I eventually pretty much lost my taste. And lots of ulcers, and I had thrush, and yeah quite difficult side effects.

But I had a lovely oncologist and nurse who were looking after me. And you know, I just kept going and got through it. A bit depressing at times when you can't eat, when it's very painful.

And obviously lots of visible signs, with the burning and everything. And then the symptoms last a for a few weeks after the end of the treatment as well, but gradually everything more or less got back to normal.

 

What advice would you give to someone having radiotherapy?

Wet foods are definitely easier to eat. And also, I don't know because it changed. Like one day I could eat something, and the next day I couldn't tolerate it for whatever reason.

So I was encouraged to eat sort of full-fat foods, to try and get in as many calories as possible. And I was also given some nutritional powders, which I would put into say something like hot chocolate, and that would be a meal for me, because that's all I could eat at the time.

So yes softer foods, wet food. For a while, I even struggled to drink water because it was just, I don't know, it just felt really thick and horrible in my mouth. But sparkling water is a lot easier to drink for some reason. And so that was a bit of a breakthrough to realise that that was much more tolerable than anything else to drink.

 

What helped you most when going through treatment?

One of the main things that helped me with the treatment, particularly the radiotherapy, was I kind of almost look forward to it starting because as soon as it started I could tick off the days until it finished.

So once it had started, I knew already that it was coming to an end even though I still had six weeks to get through. But my brain works in that I get quite a bit of satisfaction from ticking things off, so counting down those days made you realize it was only for a short period of time and it wasn't going to go on forever.

However difficult it got, you knew it was only for a finite length of time, and that you'd start to recover soon, yeah hopefully as soon as possible after the treatment finished.

But also a top tip I would give during treatment is to, as hard as it gets, is to keep eating as much as you can. Which probably won't be a lot, but if you can carry on actually you know eating, using your mouth, it's better than having a tube, and your recovery will be a lot better and you'll be able to keep your energy up, and keep as well as possible during treatment.

 

What helped you to feel yourself again after your treatment?

I think for getting back to normal afterwards, it was mostly getting back to, because I used to do quite a lot of sport and I used to do quite a lot of triathlons. So it was getting back to doing something like that, was what made me feel normal again, knowing that I had the energy to go out and run and swim and everything.

But I also had, following my surgery I had a conduction block in a nerve somewhere, wherever it was, in my neck somewhere, which affected my trapezius. So I had limited use of this shoulder and arm, but that was fairly short-lived, and I had some physio for it.

But I think just being able to get back into the swimming pool and know that my body could still do the things that it used to do, and that took a little bit longer. And using my arm properly, and also using my neck properly. 

And before I did quite a lot of exercise, I do notice the difference in my neck, even now a tiny bit but it's minute, the difference, compared to what it was immediately afterwards, so yeah just getting fitness back again and feeling like me again.