'Broken but smiling, my life lessons after living with cancer for 24 years'

Sharon Williams shouldn't smile. She has lived for over 20 years with an incurable illness that crippled her life.

She has broken so many bones you'd wonder how she can even stand with the two rods in her legs. She has drowned in fatigue, endured skin grafts and battled infections.

Adding to the hardship, her husband who was her 'rock' died a year ago. Sharon shouldn't be smiling.

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Yet she can light up a room with her energy and refuses to stop smiling, repeating her mantra 'even when it rains just dance in it'. The 63-year-old from Sutton Coldfield lives with a rare form of cancer called Multiple Myeloma.

She was an energetic 39-year-old when a broken rib caused her health to dip. After endless doctors visits she was finally diagnosed with the bone marrow cancer that cannot be cured. After 24 years of treatment and pain, she was overjoyed to finally hear the word 'remission' thanks to a revolutionary new drug.

But what is it like living with cancer for over 20 years? The bubbly woman lifts the veil on the financial and emotional costs of being a long-term cancer patient, and how to not give up when remission is a long way away.

"I was fit as a fiddle and full-time worker", Sharon said. "I did aerobics and used to run ten miles a week. I was at the prime of my life with a good daughter and husband.

"One day I woke up feeling not so good and from there is spiralled." After suffering a broken rib her health sank into a black hole of chronic fatigue and infections. She knew something was wrong but many doctors dismissed her as "paranoid". After pushing she was finally diagnosed with Multiple Myeloma, a rare form of bone marrow cancer that can affect your spine, skull, pelvis and ribs.

Grim symptoms include easily fractured bones, fatigue, blurred vision and kidney problems. On her diagnosis she said: "I was relieved then scared. I was young so I thought I'll get the treatment, get on with it and everything will be alright.

"Little did I know. It is tough, with Multiple Myeloma I had to have a lot of support. The reason I am doing so well is my mind because I am a strong person.

"My way of dealing with it is have the drug and take the good with the bad. Bad days I huddle away and I live with the good. I broke my two legs and now have rods, I have broken arms, toes, fingers and my shoulder. I now walk with a crutch.

"I have medical insurance so was able to access the drugs as they were not available under the NHS. I was working full time when diagnosed so I even paid the mortgage at the time.

"My husband had a good job with our family business, he was able to have time off to take me to appointments. We had cover on various things.

"I had to pay for prescriptions at the time. We just had to watch our pennies and be sensible, I didn't go on holidays. It was hard but we didn't have to struggle."

The financial blow was bittersweet but nothing could prepare Sharon for the emotional battering. Her daughter struggled mentally suffering from anxiety for years, a cruel twist of fate was her contracting thyroid cancer years later.

Then Sharon tragically lost her husband to pancreatic cancer, he died before she went into remission.

She said: "My husband was my rock and took everything in his stride. Never made me feel like a burden and was a lovely man.

"He struggled with anxiety as well as I could go out and trip over, then had to call him for help."

Then came a miracle when Sharon was one of the first patients to use a revolutionary drug called Teclistamab at The Priory Hospital. After extensive checks and months of treatment, Sharon heard the word that was always out of her reach.

"I could not believe that word 'remission' and my first thought was I wish my husband was here. I cried and rung my daughter and it put a spring in her step."

What is her advice for people living with cancer long term? She said: "Stay strong in your head and don't think it is a death sentence. Accept as much help financially, don't be proud about claiming benefits.

PIP is a help. People need more help because your heating is on constantly as chemotherapy makes you feel cold. Enjoy every single day you feel well, even when it rains just dance in it."

Currently Teclistamab is only available privately in the UK. Those eligible for it are adult patients with relapsed and refractory Multiple Myeloma, who have received at least three prior therapies.

These include an immunomodulatory agent, a proteasome inhibitor and an anti-CD38 antibody and have demonstrated disease progression on the last therapy are eligible.

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