National Sarcoma Week 29 June - 5 July 

This week is National Sarcoma Week, a chance to raise awareness of a particularly cruel disease. Sarcomas are uncommon cancers that can affect any part of the body, on the inside or outside, including the muscle, bone, tendons, blood vessels and fatty tissues. 15 people are diagnosed with sarcoma every day in the UK. That’s about 5,300 people a year.

Ewing sarcoma is a type of the disease that usually starts in the bone but can also start in soft tissues. It is most often found in teenagers and young adults, but it can happen at other ages.

Over the last two years, Willow has provided 36 Special Days for people with Sarcoma, aged 18-40. 26 were women and 13 men.

They all chose very different ways to spend their Special Days, here are three of their stories.

 

“It was a ten-year dream”: Michelle’s story

Michelle underwent treatment and surgery for a rare sarcoma. Willow helped her fulfil a ten-year dream to stay in the Beach Hut at Widemouth Bay in Cornwall for her Special Day where she made memories to last forever.

“I was married in 2017 and we have a little Chihuahua called Pedro. I worked as an office manager with approximately 30 staff, so my life was hectic, I worked hard and enjoyed my social life.

“I began to feel unwell and have episodes where I collapsed. The hospital couldn't find anything wrong, so I battled on but felt so tired and the pain in my arm was becoming awful. I was finally diagnosed with a rare and aggressive cancer in my arm and I had immediate radiotherapy (every day for 25 days) and then surgery. The surgery has left me with some disability in my arm and I'm signed off from work at the moment. The last six months have been very difficult with the treatment and also dealing with all the emotions that come with living with a cancer diagnosis.

“My husband still hates to talk about it and we both worry what the future might hold, as re-occurrence and spread are fairly high. We are just trying to make every moment count these days because you never know what's around the corner. It's not the start of married life either of us expected and going back to work will be challenging. I'm not the same person that I was before my cancer diagnosis.

“It was a ten-year dream to visit the beach hut. For my Special Day, I wanted to gain peace of mind that I made it there and that if I die, I will die happy that I achieved that dream. Having it booked spurred me on to keep going even when I felt as though my recovery from surgery was going backward.

“I knew my Special Day would be amazing, but it was incredible. I woke up to sunshine and the waves crashing on the beach and I just cried. We have fulfilled the dream of making memories to last forever.”

 

“It was a great memory for all of us”: Sabrina’s story

Sabrina underwent chemotherapy to treat Ewing sarcoma. For her Special Day Willow helped arrange for a 20th birthday party celebration for 50 of her close friends and family members.

“Life has changed a lot for me since my diagnosis and I have had to make many sacrifices for my health. I had to travel abroad for treatment and leave my brothers behind. I had to have surgery which has left me unable to walk. Having cancer always leaves you in fear of relapse even if your previous treatment goes well.

“I wanted my Special Day to be about having fun with my family. Booking a hall for my birthday party was a first for my family, it was all we could talk about, what we would wear and what would we do. It gave me something to look forward to and I was able to organise games and party favours. It kept me busy up until the day.

“Everyone enjoyed the party and even though the Special Day has passed, it is still the main topic within the family. It was just a great memory for all of us. Now all my family members want to do the same.”

 

It helped me cope with the stress of the treatment”: Jack’s story

Jack is from Manchester has had treatment for a rare sarcoma. For his Special Day he took his dad to the Manchester Derby as football is a big part of his life.

“My diagnosis was a shock for all the family as it was so unexpected. I have received continued support from my family, and it has personally brought us closer because of the whole experience.

“My Special Day helped me to stay motivated and gave me a goal to focus on and look forward to. It helped me cope with the stress of the treatment and I was able to spend my day enjoying something that is a big part of my life. It made me realise how important it is to spend special moments with your family.”

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