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Simon Granville-Jones, parotid gland cancer patient

Parotid Gland Cancer Patient

Parotid gland cancer

When sixty-year-old Simon Granville-Jones was diagnosed with an extremely rare cancer in his neck, he found it time-consuming and emotionally exhausting to keep all his friends and family up-to-date on his treatment progress.

As managing director of a printing firm, Riverprint in Farnham, he was in well versed in producing printed communications for his clients, yet turned to the internet to relay his treatment progress. Encouraged by his wife, Sarah, Simon started a blog on Tumblr - entitled ‘Simon’s brave face’, which has become a lasting memory of his roller-coaster journey.

“Despite having a scan which showed a small lump, my doctor thought the drooping of the left side of my face was as a result of having Bell’s palsy and I was told to lose weight and reduce my blood pressure.

Six months on and the suspected Bell’s palsy was getting worse so I had an MRI scan and some other tests where electrodes were attached to my forehead. The right side of my face was completely fine, but I could immediately tell there was a problem with the nerves on my left cheek and forehead. An MRI scan, again, showed the lump and this time I was sent for a biopsy which revealed I had a very rare malignant tumour of the parotid gland. This is the main salivary duct on the left side of my face.

I knew this was the beginning of a long and emotional journey. I had so many people to update, so decided to create a blog which anyone who was interested could tap into. It was my way of giving everybody the facts as they unfolded. And I saved the many phone calls, emails, and texts when each stage happened. It was a relief to get it down in words, as I then didn’t need to remember all the catalogue of events of what happened and when. Scribbled notes get mislaid and it was great to be able to put the pictures with the text.  

I was told I’d need ‘belt and braces’ treatment – surgery followed by radiotherapy, probably with chemo thrown in too. Treatment started with a four-hour operation at BMI Mount Alvernia Hospital to remove the 3cm tumour along with nearby facial nerves and four main lymph nodes.

I then received the path lab results confirming that I had carcinoma ex-pleomorphic salivary adenoma – a slightly better diagnosis than feared, but still a high grade and very rare cancer. My consultant explained that only one in 100 cases of parotid gland cancer have this particular type.

The surgery went well, and I healed quickly, so next was my radiotherapy. I was booked into GenesisCare which had recently opened in the St Martha Oncology Centre within Mount Alvernia Hospital. They were the first in the UK to have a particular machine which gave a faster and more targeted type of radiotherapy. This would reduce the risk of damaging what was left of my facial nerves, taste buds, salivary ducts, and glands.

I had the option to go elsewhere but found out the equipment and treatment simply weren't as good. My doctor told me that GenesisCare offered the best treatment, and luckily I had access thanks to my private medical insurance.

First up was the fitting of a mask and CT scan in preparation for the radiotherapy. Having the mask - which looked more like a string vest – fitted was rather like being smothered in a warm, wet T-shirt that then started to set and tighten. One of the radiographers helped fashion the shape by leaning on my eyeballs and another radiographer was squeezing my ears – it was all very friendly!

I learned that it was important for them to get me in the same position every day so that the rays could be directed with precision. Little labels were attached and lined up by laser beams to ensure an exact fit.

My oncologist then decided I should have chemo and radiotherapy at the same time, so for the next six weeks I had chemo every Monday afternoon, and daily sessions of radiotherapy. I had all the oncology treatment at the St Martha Centre and was able to drive myself, although my gorgeous wife, Sarah - who constantly encouraged and reassured me through treatment - came with me on Mondays.

I also had to attend the ‘nuclear shelter’ in the basement of the hospital where I was injected with radioactive material to test my kidneys! It was great everything could be done in one place – saved toing and froing from one hospital to another - and I even managed to catch up on some paperwork between appointments.

The treatment wasn’t too bad; I didn’t feel particularly sick, although I felt tired, and lost the use of my taste buds. I also lost my appetite but was determined to keep eating solid food. Over the following few months, I lost three stone - I didn’t mind that, though, as I knew I could do with losing weight!

Even with the highly targeted radiotherapy, I was warned of possible side effects – especially as I was having chemo at the same time. I lost part of my beard leaving me resembling a Van Gogh selfie but thankfully managed to avoid or keep most side effects at bay. That is until the last three days when I started having difficulty swallowing, and my neck broke out and was very sore, red-raw and bleeding fluid.

Sarah did lots of research, read all the books and guides. She filled the cupboards with pills and potions including a bright psychedelic green cream recommended by Keith Hern, a local man who was treated for throat cancer and is now involved in helping others with the disease. It has Aloe Vera, jasmine and lavender extract in it, and worked extremely well. I was better within a week – half the time the professionals expected!

I was extremely well looked after by the GenesisCare team; I got to know them very well although it was all very emotional. Everyone at the hospital, without exception, were truly professional and fun. Cancer treatment wasn’t a nice thing to go through, but they made it very bearable. I got to know them very well, although I don’t think I want to return as it is strangely emotional going back there, even for follow-up consultations.

Despite everything, I’ve generally been able to get on with life – although had to miss the odd dinner party, and couldn’t enjoy the meal at my dad’s 90th birthday party. However, I’ve enjoyed breaks away with family and friends; continued to work, been to concerts and music festivals, and even managed to sneak in an odd beer or two.

Just over six months following my diagnosis I got the great news that I’m totally clear of cancer – the PET scanned revealed no trace of any nasty cells.

My taste buds still have a little way to go. Red wine, chocolate, coffee still taste gritty and earthy, but I’m getting there.

I still can’t feel my face on the left-hand side, and feel an ache in the jaw. My facial droop also makes me look sad (even though I’m not!) which my sons – aged seven and 15 - don’t like. So next, I’ll be seeing a facial plastic consultant regarding some aesthetic surgery. I hope he’ll be able to lift my drooping cheek, upper lip and side of my chin, as well as my left eye which remains half closed. It’s very frustrating - I feel like I’m driving a car with a windscreen wiper that doesn’t work on the passenger side!

Over the last few months I’ve had some low moments, but not many. I am very fortunate that the GenesisCare centre had opened in Guildford only months before I needed it. I’ve generally felt upbeat, very positive, continued doing most things, and feel well.

I’ll continue with the blog until after the plastic surgery and I’ve got my ‘after’ face, and then it will come to a natural end. In the meantime, I’m delighted that I feel good and know things will get even better. I look forward to smiling again.”

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On 8th January 2016, we changed our name to GenesisCare.