Being a young person with cancer can make you feel isolated - Sophie Vohra

Sophie Vohra - Patient in our Teenage and Young Adult Unit

Sophie Vohra

At the age of 23, one of the last things you expect to hear is that you have cancer. In April I was diagnosed with a Ewing’s Sarcoma on my sacrum. I had been suffering increasingly from bad pains and numbness down my right leg since January, which became so unbearable during March that I finally decided to visit my GP. 

Initially, we both thought that the pains were due to sciatica and that I should try to reposition the slipped disc into place with NHS recommended exercises and using anti-inflammatories to help with any swelling. Over the next two weeks I was unable to sleep because of the pain when lying down, having visited the GP again for pain relief that didn’t have any effect. 

I finally accidentally aggravated it so much after I had been swimming that I went into retention and had to go into A&E as we thought it may in fact be Cauda Equina Syndrome, which would require immediate surgery. 

When I was transferred to Salford Royal, they scheduled me for an MRI, assuming they would see a  slipped disc. Sadly what we got back was worse. There was in fact a lump that was pressing onto my spinal cord and at that point they didn’t know what type of mass it was. I therefore had a biopsy and after having to wait around two weeks I was told it was malignant and by the end of the month I was told it was a Ewing’s Sarcoma that was pressing on my nerves. 

Each time I received another piece of the puzzle as to what it was I would get upset for a little while and then I would get my head round it all.  I knew I would get all the treatment I would need and that I would have the incredible support of all my friends and family throughout it.

I started my treatment at the end of April at The Christie, and everyone and everything from the minute I walked in was incredible. My family and I never felt like we weren’t getting all the information we needed and the organisation of my treatment from the beginning was so efficient. 

I had all the initial tests done, I was randomised onto a trial regarding the administration of the chemotherapy for Ewing’s Sarcomas, had a Hickman Line inserted, and began treatment in the space of a few days. 

The fourteen cycles of chemotherapy over the months were tough and my body certainly found its way around most of the side effects – sore mouth, achy body, no blood cells… the list goes on! My treatment cycles occurred every two weeks, whereas the standard treatment is every three weeks. This meant I had very little time to feel well enough to do anything because as soon as I had recovered from the chemotherapy I almost immediately started the next dose. 

Being around some of the nicest doctors, nurses and other staff you will ever meet was also really comforting when, for several months, you feel like you spend almost all of your life in hospital. 

I was also very lucky to be put forward for Proton Beam Therapy treatment in America, as my tumour cannot be operated on. This treatment means that, as opposed to standard radiotherapy, less damage has been inflicted on the area surrounding my tumour and hopefully I have less of a chance of secondary cancer which can be caused by treatment. Having all of this available to me has meant I have received all the best opportunities to try and beat this horrible disease.

The Christie also has teams in place to make sure that your social and mental needs are looked after. A cancer diagnosis means you are plucked out of normality for a while, which is a huge shock to the system. 

With having to spend long periods of time receiving treatment on the ward, one of the things I am incredibly grateful for is the amount of facilities and activities that were made available. 

Both the Palatine ward and the day unit are designed to allow younger patients, their families and friends to have as enjoyable a time as possible while going through some really difficult times. The hospital provides modern single-occupancy rooms, a social hub for when you want to spend at least a little time out of bed, access to games and DVDs from the games room and a gym space amongst many other amazing things. Many people who have visited me on the ward couldn’t believe how wonderful it was and questioned if it was in fact a hospital! 

These facilities are also available for anyone no longer receiving treatment, which means that former patients can come to events held on the ward for example. We have all manner of events organised for us within and outside the hospital. There are band rehearsals, art workshops, language lessons, cooking and baking, a pizza and film night every Wednesday, and seasonal events such as a Halloween party held on the ward just to name a few. 

The teams also get tickets for music and sporting events, organise meals and get-togethers, and generally encourage a lot of interaction between all former and current patients. These are advertised on their Facebook page so we can easily be kept in the know. 

Being a young person  with cancer can make you feel isolated because it is less likely that we have come across someone in our lives who is going through the same thing at the same age. So being able to relate to others who are, or have been, in the same position as you is very important in understanding and coming to terms with the experience you and those close to you are going through.

I have finally come to the end of my treatment, with only the post-treatment scans to happen now, and I know I couldn’t have got through it without the incredible support of every single person who works with Teenage and Young Adult  patients. 

No one should ever have to go through a life-threatening illness like cancer, but places like The Christie and the facilities they have for young patients mean that we can not only get through our treatment, but can also continue to live a fulfilling and happy life as we do. 

I can move on now with my life, having started my PhD last month at the University of York. 

But I also have a very important network of people who I am very glad I met out of such an awful experience, and I will stay in touch with this group of inspiring young people who have come together through The Christie and the incredible staff who have supported us.