Share your voice – Your story LCH Adults
Histio – Nikolas Kontoyannis & Family
Intro: Clare Bacon shares her story from initial illness through diagnosis and treatment to the current day
Sept 2012 busy at work, busy at home, living the usual juggle of a working mum. I had a cold which developed into tonsillitis, something I had become prone to since the arrival of our children. After a couple of weeks, several rounds of antibiotics the infection faded away. I was back at home but still feeling very under the weather, headache, sinus pain bad cough….GP wasn’t keen to prescribe more antibiotics so I plodded on. I was extremely fatigued and one night having gone to bed early, a large lump appeared on top of my forehead.
I could feel the swelling moving across my head and tracking down across my brow. I felt quite panicked, my husband told me not to worry – Mr Calm! Somehow I slept.
The next day my face was still swollen, my head and neck were stiff and painful, I managed to get a GP appt for that day. My husband came with me and I explained my symptoms, and previous infection. The swelling was clear for the doctor to see, I stressed the sinus pain.
The GP was fairly swift in telling me to go to A and E, so off we went.
It is about now desperation, and frustration started to rear their heads, feelings that have only grown over the last three years.
Our local A and E decided I needed to go to another hospital as they had an ENT dept.
Arrived at next A and E, went through the usual process eventually got to speak to a member of medical profession – not convinced an actual Doctor. His opinion was that I was allergic to shampoo and had suffered a reaction. My history of infection and sinus pain were discounted. I was sent away with steroids and some general antibiotics. I knew I did not have a shampoo allergy and could feel inflammation, swelling and pain all around my head. I returned home very worried.
The next couple of weeks passed in a blur of pain, weird brain sensations and feeling unwell. I decided to take matters into my own hands and requested my GP to refer me to an immunologist.
Saw the immunologist who actually listened to me and agreed to run a CT scan of my sinuses/head. I started to feel better and the only ongoing issue was pinpoint pain on my skull.
The immunologist asked for me to return on 24th December. The day came I trundled up to the hospital in amongst Christmas mayhem with relatives at home and children beyond excited.
The Dr wasted no time in telling me I had multiple lesions on my skull, he advised me not to think this was the worst news ever. Clearly that advise fell on deaf ears.
Thoughts of Bone/brain cancer, sudden death, last Christmas, 3 months to live filled my head.
The DR busied himself with form filling in and told me I needed multiple urgent tests.
I returned to my car where I collapsed in sobbing fear, telephoned my brother in a crying state and blurted out I was dying. – my poor brother. I had to go home and tell my husband and then get back for all the tests. Walking past smiling at my mum and father in law I had a large sherry and told them I had a routine scan later that day. How I pretended I will never know.
The day was one of the worst I have experienced, scans and bloods followed. No opinion proffered until the last MRI where a radiologist suggested it could be severe infection. Was this a glimmer of hope that I wasn’t about to lose my life ?
Returning home, I staggered through Christmas Eve. The immunologist DR rang about 8 pm and told me he was trying to arrange urgent surgery for me as one of the lesions was close to penetrating my brain. The effort to pretend I was ok dissolved., although I still could not say anything to family. At 10pm it was confirmed by telephone that a surgeon would see me Boxing Day morning at St Georges. OH MY GOD.
Needless to say Christmas was a walking blur, my husband was suffering from a peritonsillar abscess and was really unwell and I was beyond distressed. I often think that the virus/bacteria infection that caused our tonsillitis kick started LCH. (of course I am alone in that)
I was admitted into St Georges and various tests were carried out, I waited about 10 hours before being taking to surgery. I was forcing myself to be calm and disconnected from what was going to happen. That is, until I was on a trolley outside theatre and a guy in scrubs approached, he started putting stickers on my head, and asked if he could shave my hair. The look on my face, made him mumble “maybe later” and he retreated. Seconds before oblivion the surgeon introduced himself and said whatever he finds he is going to cut out. Brilliant!
I come round in some holding pen for post op patients and feel grateful I can see and have normalish thoughts. I leave hospital with no information but a lot of heavy staples in my skull.
It turns out bone biopsy takes a number of days/weeks. A section of skull measuring 4 by 4 cm was removed and a piece a mesh inserted. I was advised to avoid bumps on the head – helpful!
After a few weeks I finally got a call from the much pestered Doctor at St Georges. I had Langerhans Cells Histiocytosis. His thinking was, I would live, but would be ill for a long time.
Its going to be manageable I thought, I can carry on with my life. What a phenomenal relief.
Now, it is still a relief and from where this all started I am a very lucky woman.
Unfortunately, what I and other patients struggle with is medical care, support, treatment and understanding. The illness is understood in part but not what causes it, and not its behaviour.
For me the last couple of years have been full of doctor’s appointments, tests for unexplained symptoms, reoccurrence of skull and immune issues, scaring the life out of me that more holes are appearing in my body.
Doctors can only see what they can see and will only treat what they can clearly identify. Sadly, that does not help LCH sufferers.
I cannot explain my illness to my employer, GP and LCH Doctors do not react to the eternal roll of infections and symptoms. It is hard to be positive and think that I might be well for more than a week or two at a time.
That said, so far one hole in the head, significant unexplained hearing loss and poor health, perhaps I am one of the fortunate ones.
By raising awareness of histiocytosis in the national and local press we can reach more people. We rely on personal stories to help us engage readers around our cause and bring our stories to life.
If you are interested in sharing your story on our website or in a magazine, newspaper or on TV please send a 100-word summary of your story along with your name, contact details and a recent photo to Histio@histiouk.org. We regret that we are unable to respond to everyone, but we really appreciate you getting in touch.
Why should I share my story?
We want to help as many people as possible during their histiocytosis experience – patients, carers, families and communities. By raising awareness of what we do in national newspapers, magazines, on TV and in the local press we can reach more people.
We rely on personal stories to help us do this as they engage the reader and bring the story to life. For example, if we provide research for a newspaper showing that histiocytosis can affect people financially it has more of an impact if it’s accompanied by an emotive quote or story of someone who has been directly affected and helped by us.
Your story can encourage those who see it to get help if they are worried they have the symptoms of histiocytosis or may inspire them to donate or fundraise for us. Some people who have shared their story find it a cathartic experience. It makes them feel good to give something back.
Where would my story appear?
As well as our website, we work with a range of media from broadcasters like the BBC, national newspapers like The Times, Daily Mail and Guardian and women’s magazines like Woman’s Own and Good Housekeeping.
They all have different requirements for their stories so we would approach those which we think are most appropriate, depending on your story.
Do I have to be identified/pictured?
Yes, all of the magazines and newspaper ask that the people they interview are pictured. Some ask you to send/email them photos to use while others send a photographer to take photos.
Will I have a say over what’s written?
By sending us your story you agree to its publication on our website or on or in any publication that may collect news feeds or create editorial content.
Request by journalist for contact details will be agreed with you in advance of disclosure.
Please be aware that whilst some journalists offer to read your story before it goes to print to check facts it depends on the publication and this cannot be guaranteed.
What happens next?
The journalist will try tell you when your story will appear so you can get a copy and tell all your friends. We ask the journalists to include information about Histiocytosis UK Support’s campaigns and services and you can feel proud that you’ve helped deliver our message.
If you are interested in sharing your story in a magazine, newspaper or on TV please send a 100-word summary of your story along with your name, contact details and a recent photo to Histio@histiouk.org. We regret that we are unable to respond to everyone, but we really appreciate you getting in touch.
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