A man has told how he thought year long sore throat was just laryngitis and has now been left with permanent voice damage as it turned out to be a rare tumour.
Lee Marsh, 54, from Exhall, Warwickshire, started losing his voice earlier this year and put it down to a " sore throat ", reported CoventryLive.
He treated himself for laryngitis with over-the-counter medication but then his voice started getting worse and he had sharp pains down his neck.
The grandad-of-four, who works as an engineer, went to see his GP after he started finding it difficult to swallow and he was sent to Coventry hospital for a CT scan and an MRI.
In August this year, doctors found Lee had a glomus jugular tumour at the base of his skull which is so rare that only one in 1.3 million people worldwide are diagnosed with it annually.
It has caused irreversible damage to Lee's vocal chords and he is now able only to whisper.
"It was really shocking to hear the diagnosis. It's not the type of thing you expect to happen," he said.
"It is what it is, and you have to deal with it and do everything you can to get over it by facing it head-on and getting the treatment that is required.
"My voice won't come back - it's all irreversible. It's also been very difficult with food. I lost two and half stone because I struggle to eat and I have to break my food down to very fine bits."
Because of the rarity of his condition, doctors referred Lee to a specialist team at St Bartholomew's Hospital in London and he travels there three times a week for treatment.
He is now worried about how to pay for the cost of travel and staying over in hotels as he does not get paid sickness leave from his work
"I don't get help with my travel costs, and now I'm in central London three times a week," he said.
"The hotels are expensive, but I have to stay there as I can't be travelling long distances after radiotherapy treatment as it will be a huge knock to my body.
"All I get is statutory sick pay which is about £98 a week. I don't get sick pay from work. I've been off work for the past two weeks and I will be off for the next two weeks and I won't be getting paid at all. It's quite dear, but you can't put a price on what you have to do."
Lee's wife, Karen, accompanies her husband to London to help him and his niece, Claire, has launched a GoFundMe page to help with the costs.
Lee said: "The fundraiser will go towards my travel and accommodation, and that would help immensely. We have bills to pay, we have to eat and live and keep warm this time of year."
Claire said: "I wanted to support my uncle with the costs of going down to London, paying for hotels, paying for travel to and from London. He's not bringing any money from work and the family have bills to pay.
"It's taken so long for Lee to get a diagnosis after so many months. We're glad he's got a final diagnosis and is moving forward, but he has to live with this for the rest of this life.
"And the fact that the hospital is in London, it's a trek, his wife has to have time off work to help him as well. The last time he was only going for scans, they managed to get a cheaper hotel fare.
"But with the intensive radiotherapy, he can't be going on public transport. He needs to be in a hotel in central London near the hospital and the prices there are really high. He wouldn't want to be taking the trains because the radiotherapy lowers his immune system."
To donate to Lee's fundraiser, click here.
