Julian

‘It was 28 October 2013 and I was driving to Heathrow to collect some friends. Something made me touch the underside of my jaw on the right side and I felt a soft lump. When I got home and examined it more closely, I found another smaller and harder lump a little lower down on the right side of my neck. I knew this was the general area of ‘lymph glands’, which I knew could be swollen when you feel  ‘under the weather’, so I was not unduly worried at first. But I thought it was a bit strange as I felt perfectly well and had only just come back from a great family holiday.

So I booked an appointment with my GP. She thought that it might be a blocked salivary gland, but a visit to my dentist and X-rays seemed to rule this out. A second visit to my GP followed, and then referral to a consultant maxillofacial surgeon.

The tests – feeling emotional pressure

I started to suspect lymphoma, even though I knew that ‘self-diagnosis by internet’ can be very wide of the mark. My consultant tried to reassure me, continuing down the ‘blocked salivary gland’ route, but at the same time scheduling a suite of tests. These included X-rays, blood tests, an ultrasound scan with fine-needle aspiration and finally a CT scan.

Now I was getting very apprehensive about the diagnosis, and my future. Exactly ten years earlier I’d had surgery for prostate cancer and now faced the probability of a second cancer challenge.

Facing facts – the diagnosis

It was not our best Christmas. On 18 December 2013 my consultant advised that the CT scan had confirmed, with 98% certainty, a diagnosis of lymphoma. He would need to do a biopsy under general anaesthetic to remove a lymph node from my neck for further tests.

I felt numb but not surprised. No amount of preparation for the news actually helped. I knew there were many questions I needed to ask, and yet, in that instant, I could not  think of a single one. I left his office and went for a cup of tea because I didn’t feel safe to drive home. I sent a text to my wife with the news, because I felt too ashamed to speak to her at that moment.  Shame is a strange emotion, I know, because I had nothing to be ashamed about, but that is how I felt.

My wife, my son and daughter and my extended family were, and are, tremendously supportive. They know that it is in my nature to ‘work the problem’, and learn as much as possible about the best way forward, which is what I set about doing.

Towards the end of January 2014 I had an excisional biopsy. The pathology from the excised node diagnosed low-grade nodal marginal zone lymphoma - one of more than 60 variants of non-Hodgkin lymphoma.

Planning and having my treatment

By this time I had benefitted from going to several meetings of the local Lymphoma Action support group and had spoken with a man with non-Hodgkin lymphoma who had been on ‘watch and wait’, without any symptoms, for 2 years. He explained that at first it was difficult to come to terms with but the 3-monthly check-ups were reassuring and he was just getting on with his life.

However, watch and wait was not going to be the plan for me. The medical team felt that radiotherapy would be an appropriate course of action for my lymphoma. A PET/CT scan was suggested to review the disease. The PET/CT showed that the disease was confined to my neck, arm pit and just above my collar bone – I was stage IIA with no symptoms and I was in good general health. A total of 15 fractions (treatments) of radiotherapy were planned.

Because the lymphoma was confined to my neck, arm pit and just above my collar bone, the medical team felt that radiotherapy would be appropriate

Julian

I had no idea what to expect from the radiotherapy planning. Because of where the disease was, I was to have a head and neck ‘shell’ or ‘mask’ made which would be used to ensure I received radiotherapy to exactly the same position each time. A mesh-like material was placed into a warm water bath and then placed over my head, neck and shoulders. I could just about see through it. Then the mesh was massaged into me like plaster of Paris. It felt very tight, but from there it created a profile. Once this had been done, a template was available to make the shell.

The actual shell is semi-hard – it is pliable but retains its shape. The worst part for me was not only do you have it on you, but you are then bolted onto the bed to ensure you do not move. I found it very odd that I could only see from one angle. I was able to breathe easily, though I found that the best way to cope was to think about totally different things. 

The overriding requirement is not to move and I understood that irradiating other structures in my neck would not be a good idea. I was worried if I needed to cough or sneeze and they told me: ‘whatever you do, don’t be polite and move your hand over your mouth’.

Having the radiotherapy was very straightforward. I hardly knew anything was happening apart from the machine arching around and some buzzing.

I had recently retired, and although I was undergoing training to become a Citizens Advice Bureau assessor I felt I really needed to concentrate on my treatment.

Side effects

After about three or four days my skin became a bit sore where the radiotherapy was targeted. It looked a bit like mild sunburn and then became a bit flaky. The radiographers recommended I use some aqueous cream, which helped a bit.

My mouth became quite dry and I had dry lips but it wasn’t too problematic. I had read that people often feel fatigued with radiotherapy. In fact, I did feel tired. I felt the whole process quite exhausting in itself – the 45-minute journey to hospital, finding a parking space, waiting for my treatment session to be completed and then travelling home.

Follow-up

My August consultation was very encouraging. The lump had decreased in size and they thought that the remaining lump was scar tissue. Because I had no symptoms, I worry that I might not recognise the lymphoma if it comes back, but the 2-monthly review (which will be moving to 4-monthly review soon) is reassuring. I have also recently started working again, which makes me feel that life is getting back to normal.’

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Update from Julian in December 2019

I have been in remission since late 2015, with no further haematology check-ups and in good health.