Margaret’s Story

A life lived with NF and reflections on the charity

I arrived in 1954, the second of two children. We lived in Islington, quite close to where the Emirates Stadium is. My parents lived in the middle of the house, my mum’s brother and his family lived above us, and downstairs were grandma and grandad.

When I was 18 months old, I was rushed to hospital with double pneumonia. Tests were taken and my parents were told that I had to go on a new gluten free diet, as I was gluten intolerant and coeliac for life.

My dad worked for a wholesale caterers at a time when the country was not long off rationing. He was able to obtain gluten free flour, but I doubt it was easy for them.

When I was about six we moved to Enfield, and eventually around the age of 8, my GP decided I should come off that diet. I survived, but even today I can’t eat things that are high in gluten.

Mum had noticed, what we eventually got told were café au lait spots, but these were dismissed as birthmarks. It was as I got into my teens that tumours started to grow on my chest, at a sensitive time of growing up. My GP told me not to be so sensitive! However, he did give us a name: Van Recklinghausen disease. My parents checked medical dictionaries of the time, with out-of-date information that worried them. His comments, though, made me want to ignore it.

I never did well at school at a time when, if you struggled, you were considered thick and not helped! They had stopped the 11-plus in Enfield and I went to a Secondary Modern at 11. I took CSEs and got low grades.

On leaving school, I managed to get a job with The Labour Party in their library. My second love was reading. I had met my future husband, and although the NF was moving up my body, it still was not on my face. After seeing a new type of consultant called a geneticist, I realised I did not want children that could inherit NF1. If I did marry, we would try to adopt, which in fact never happened due to the criteria at the time.

One day in the early 80s, I read about a new charity being set up under the name Link, by two mums: Claire and Trish. This led to my dad initially becoming Treasurer and eventually chairman. During this initial period, we used to organise information days. At an early AGM, a young junior doctor arrived wanting blood samples to help with trying to find the chromosome we now know as 17.

Before The Human Genome project had been finished, and when Chromosome 17 was discovered to be our chromosome, we thought we were on our way to a cure. Sadly, although progress has been made, NF has still proved to be difficult. I still believe that initial diagnosis should stem from all the ways I was diagnosed, with the obvious markers of café au lait spots being the most important, but that is a personal view.

The junior doctor I gave blood to back in the 80s, was Dr Sue Huson who became one of the top NF doctors, until her retirement.

The charity has evolved from being volunteer led to what Nerve Tumours UK is today, so a big shout out to those two mums, or we would not have this charity today.

We lived in Swindon for a couple of years, as houses were cheaper than London. When we moved back to London, I started a long 36-year career at The British Library. At the start of the millennium, I had moved into the new building near King’s Cross. My job changed and became more customer focused.

By this time I was in my early 40s, my husband had stood by as the NF took revenge by climbing up my face. I was finding that I was getting more comments that were difficult to deal with. At work however, if a customer asked, my reply was that I didn’t discuss personal information in public. Nevertheless, my confidence was at a low ebb. At the time, the charity was not able to deal with issues, so I turned to Changing Faces who gave me guidance in how to deal with these situations. Two things I do: smile in the face of adversity, and count to ten before reacting. The latter helps to assess the situation.

So to sum up, my NF is now severe and I have had challenges over the years. At times it has undoubtedly been difficult, but with a supportive partner and parents, we got through. Sadly, I no longer have nearby support, as my husband Peter died during Covid after a short illness. In fact, it is during the last five years that I have had to fight on my own to get an op to remove fibromas on my eyelid. It was a relief when finally done, as my original consultant had agreed to do it just prior to Covid. Covid and Peter becoming ill led to the delays.

I have always tried to keep a positive outlook and try to encourage those newly diagnosed to do the same. I know for many people, they find it very difficult when told by a GP or consultant that it is cosmetic and we should go private. It is not. The wording of the request/letter is vital. Nerve Sheath Tumour and tumour is vital, even though in the majority of cases, it’s benign. The wait can be long, but we live in difficult times.

The charity has been around for over 40 years, and although research has not moved on as quickly as we had hoped in those early days, there is no doubt NF is complex and therefore treatment for me is different to someone else. The researchers will get there. Meanwhile, it’s vital that the charity’s campaign for more nurses continues. I would also like to see more grassroots members being ambassadors who could campaign on a local basis and spread the word about NF. The charity has come through difficult times, and has not always been there for its community, but I believe that has changed. I hope Thomas Young, the NTUK Patron, does well; he seems like a lovely lad - perfect as a role model for youngsters.

Also, if anyone remembers me or my parents, Len and Joan Tweed, and attended those early information days that we organised, please get in touch. Perhaps you were one of the children who were entertained, thanks to a Children in Need grant. It would be good to hear from you.

If you would like to get in contact with Margaret, please email info@nervetumours.org.uk