“Cancer has changed me as a person.” Meet Emma Boswell, who has set up a Cancer Support Group in London

Posted on September 24, 2013

A brand-new Cancer Support Group has been set up in London by Emma Boswell, who herself recently recovered from the disease. The group will aim to offer support and reassurance, and will be a safe place where people can share their experiences.

It will meet between 5-7pm on 15th October, 19th November and 17th December at Royal Marsden Hospital, Fulham Road, London SW3 6JJ. The nearest tube is South Kensington. Sign language interpreters are available.

For more information, just email deafcancer@gmail.com. You can also download the flyer as a PDF by clicking here: Cancer Support Group

Below, we talk to Emma about how the group came about. F

What inspired you to set up the group?

Because of my personal experience. I was diagnosed with ovarian cancer at the age of 38 last year and underwent four operations.

I found out I had cancer when I was called in to meet an oncologist who broke the news. I was completely shocked and overwhelmed (particularly because this was shortly after the funeral of a good friend and colleague who had died of cancer barely three months before).

My immediate thoughts were; will I see my children (aged 2 and 3) grow up? Will I grow old with my husband? Will I see my children reach all their milestones – start school, attend university, jobs, get married and have grandchildren? Will I die?

I was lucky I did not require chemotherapy because it was caught at a very early stage, and the surgeon managed to remove all traces of cancer.

I was off work for ten months. My employer, Sense, has been tremendous in supporting me. I have also come across many other people who have had cancers either at early or late stage.

But I had nowhere to go to and talk about my diagnosis.

How did having cancer affect you?

Cancer has changed me as a person. My perspectives and priorities have changed.

One word; cancer is POWERFUL (I was knocked sideways when I told I had cancer) and feels like a death sentence – everyone dreads this. Nowadays, many people survive but we need more and better information and awareness.

The oncologist explained the diagnosis through a sign language interpreter, but everything was a blur to me as I cried and held my husband’s hands. I felt my world was falling apart.

It was also difficult being a wife and mother with two very young kids. It was very traumatic psychologically. I would not wish this on anyone – including their carers/partners. I was lucky to have fantastic support from my husband, family, friends, my bosses and Sense.

I was very fortunate, but other people may experience this differently and it was difficult for people to empathise with what I went through and my not wanting to be a ‘burden’ on other people.

At that time, I needed someone to talk to, someone who understands, someone who could empathise because they went through it themselves. Most important of all, that someone should be deaf, so I can talk in my natural language – sign language.

Did you find someone to talk to?

A friend introduced me to someone in Bristol who underwent similar surgery and treatments. It was a truly uplifting and inspiring moment to talk to this wonderful deaf lady, and we regularly communicated through Facetime which was a GREAT help.

I was looking for a support group but I discovered there was no support group for deaf people in London.

After my 4th operation, the impact of it all was beginning to hit me because throughout the journey it was very difficult and emotional. I had to fight to keep myself focused on recovery. During my treatment I lost three stone.

I had counselling sessions provided by RAD to help cope with this. I regularly attended Ovacome support group for women (with the support of my interpreters who volunteered their time, for which I will always be grateful). I found this support group extremely beneficial but it is hearing-led and all the participants were hearing.

Last January, I travelled to Birmingham and attended a deaf support group ran by BID Services (The Deaf Cultural Centre) and I went back with my family in May for the BID Cancer Information Day. It was a positive experience, but I thought ‘why wasn’t there something similar in London and the South East?’

I very strongly felt that London and the South East region should have a support group for the deaf, HoH, Usher and Deafblind people where they can go to and talk to each other, have full communication access to discuss whatever they like, clarify and ask questions of professionals.

I wanted something where people can go to and feel comfortable talking about their diagnosis, gain a better understanding, empathise with others taking part, develop friendships and a support network that they can take back home with them. And keep in regular contact and share information.

There is plenty of support and information for hearing people – but where is the support for deaf, HoH, Usher and Deafblind people?

How did you get funding?

With this in mind, I contacted the Macmillan cancer charity to discuss the possibility of setting up a support group. They were very enthusiastic and very supportive. They agreed to provide some funding for this. They have also agreed to provide a cancer specialist nurse to attend the support group meetings.

I liaised with the Royal Marsden Hospital who were also very enthusiastic and agreed to provide the boardroom for no charge and provide professionals who will attend the group. The professionals will be very happy to discuss issues, take questions and so on.

A deaf counsellor has kindly offered her services free to facilitate the support group. I have volunteer interpreters willing to offer their time to interpret these events.

SignHealth and Sense have also agreed to provide support.

The success of the group depends on the attendance and if the group is well attended and the demand is there, then Macmillan and Royal Marsden will continue to support the group.

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What are your aims?

I want deaf, deafblind, hard of hearing, deafened and Usher people with different types of cancer, both men and women, to have the opportunity to talk, empathise and share experiences and seek advice from specialist nurses and other professionals.

I will be inviting speakers to present details, news of future treatments and advances in medical treatments.

Macmillan will provide information on various issues such as employment issues, rights, benefits and so on and trainings if they are interested. If this is a huge success then we could influence Macmillan and other organisations to roll this out nationally.

These support groups would be fully assessable with interpreters provided, and all the participants being able to communicate comfortably in their own language.

In the near future, I also want to set up a buddy network where people can empathise with those with cancer or family members and develop friendship thus removing the sense of isolation and feeling of uselessness.

How can people get involved?

Deaf, HoH, Usher and Deafblind people with cancer or family members are very welcome to attend, take part or just observe, discuss with others in the same or similar shoes, understand, empathise, and provide emotional support.

Volunteers would be appreciated to help out with refreshments (cakes would be lovely!). Macmillan  and we will provide the tea/coffee and biscuits!

The group will meet between 5-7pm on 15th October, 19th November and 17th December at Royal Marsden Hospital, Fulham Road, London SW3 6JJ. The nearest tube is South Kensington. Sign language interpreters are available.

For more information, just email deafcancer@gmail.com. You can also download the flyer as a PDF by clicking here: Cancer Support Group

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