Dear Friends

This morning I received the sad news that Clare Jones passed away last Sunday at Shrewsbury Hopsital. Clare was a contributor to the forum. She was diagnosed with tongue cancer in Feburary 2003 at the age of 19. She had an operation to remove the right side of her tongue, reconstruction with a flap from from her right forearm and a neck dissection. She joined our message board in August 2003 nearly 5th months after her operation. She thought the site was brilliant and wanted to know how others coped with their scars as "the scar on my forearm (skin graft) feels horrible in fact when I or someone touches me on this forearm it makes me feel really sick. Also the scar on my neck feels really tight." "I would like to to discuss my feelings etc with people who have experienced the same operation as myself." And this led to a ladies discussion of how the scar on the arm was disguised! She made friends with Kelley in Australia and Vicki Lynn in Las Vegas, and Pauline and Ryoko in UK.

She was then at Loughborough University and became very involved in promoting mouth cancer awareness - putting up MCAW posters around the university and her hometown of Shrewsbury. Her team also did a collection at the Students Union for the MCF.





She gave interviews to the Sunday Telegraph and local paper. She was so enthusiastic. Fran also read about her in the Daily Mail!

In November 2004, in her final year of a Information Management and Business Studies degree, she decided to do her dissertation around the NHS/health area. She decided to investigate the information needs of mouth cancer patients and this Message Board in particular. Brenda, Ishbel,Brett, Fridge, Pikeman, Garance and Paul among others, all rallied around to help her make it a success.

In March 2005 she was very worried when a lump appeared in her neck but to everyone's relief, the MRI scan results were clear. She sat her final paper in June 2005 and Maurice and the rest of us were all keeping our fingers crossed for her to get a 2:1. Clare's wish came true and she got the degree result she wanted and we were all over the moon . She sent me her dissertation.

By November 2005, Clare had got a job and was living in Swansea. She did an interview with ITV Wales for Mouth Cancer Awareness Week. She was enthusiastic and wanted to get involved with the work of the Mouth Cancer Foundation.

Unfortunately in June 2006, Clare informed us that she had secondary bone cancer. We were devastated by the news. Clare bravely went through the treaments offered and kept an online blog to update her friends. It was a difficult time for her and she was very very scared and we tried to help best we could. She worried about the effects of chemo and fertility. By 3 January 2007, she let us know that she had finished her chemotherapy and that it had been tough but she looked forward to a better 2007. Unfortunately, the MRI scans showed no change in the size of her cancer and when she asked us what to do now, we didn't really have an answer.

The cancer eventually spread to her brain and Clare passed away peacefully with her family and boyfriend, Dan with her. The funeral is next Wednesday at Shrewsbury and if anyone wishes to attend, please contact me for the contact details of her colleague Susan at Swansea NHS Trust who will be going.

I know that she found this forum a huge support. Her friends thought that she would prefer us to donate money to her favourite charity rather than sending flowers. So a site has been set up for her friends - wherever they are in the world.

My heart goes out to Clare's family and her boyfriend at their loss of a truly loving, caring person. Clare will always live on through our memories of all at MCF and this message board.


Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Very sad to hear this.An inspirational story and a brave person.

Oh Vinod, that is such sad news, She worked so hard at the illness & we were all so pleased when she got her degree in spite of it. Its so sad when we lose talented young people. My thoughts are with her Family & those who knew her. Thank you for letting us know.

Vinod

Thank you for letting us know Clare is an inspiration to me and has left an everlasting imprint on my memories. This has brought great sadness to my heart. My thoughts go out to her family.

Melanie x

As a young former tongue cancer patient myself, Clare's story has impacted me a lot. It sounds like she was really pro-active in raising awareness about mouth cancer, which is so important as we all know it is commonly diagnosed late. I am glad this forum was a support to her. As Mel says, my thoughts are with Clare's family.

As I have been 'away' from the message board for some time due to r/t treatment I missed Vinod's posting telling us that Clare had lost her battle with cancer. I am truly shocked and saddend to learn this. I, along with others, had many exchanges with Clare, particularly whilst she was at Uni doing her degree and was always encouraged by her positive attitude and maturity.

It broke my heart that such a young, vibrant girl had to go through so much at a time when she should have been out enjoying University life with her flat-mates - and doubly heartbreaking that having attained her much wanted degree and thinking she was through the worst that this cancer came back to claim her life. I am so sorry to read this today and if any of Clare's family or friends do look in on this website, can I extend my deepest sympathies and join with the rest of the members in sharing special memories of Clare and we send our love and prayers in memory of a very special young lady. Sincerely Brenda.

Its just so sad and depressing to read about Clare.

It made me so very sad to read of a beautiful young intellgent woman like Clare passing away. It's good that she achieved her degree and started a new working adult life, but so sad that it was such a short recovery and such later damning news.

I hope she has peace now.