News

Swallows Head & Neck Cancer Conference 2023 

On the 8th and 9th  November,  we packed the car and drove down to Torquay, for the head and neck cancer conference. The event was fantastically organised by swallows. 

Over the 2 days there was many amazing speakers from physicists to dieticians. Stalls a plenty. Gelx and atos were 2 of many. The passion shown by these guys was amazing. The confidence in the brands was also great to see. 

On the 9th we was lucky enough to be invited to take to the stage to tell our story, and continue to raise awareness to the laryngectomy community. Taking to the stage, to deliver our power point, was a proud moment for me in this journey. Considering I had surgery only in Jan 2023, we have achieved so much in raising awareness and helping others. Next year will be in Sheffield on 5th and 6th Nov, where I hope to be speaking again


The Swallows appoints John Organ as new advocate.

 

John Organ has been appointed as new advocate for The Swallows Head and Neck Cancer Support Group

 Our advocates speak, writes, or acts in support of the charity. They play an important role in the charity; they deal with the community the charity supports and may use their knowledge and expertise to assist the growth of the charity. They look to drive awareness of the main vision of the charity and support the charity community where possible.


Artwork donated to Life After Lary by two amazing artists , Thank you Kirsty Rouse & Maggie Wilkinson

 

Art work has been donated by two of my favorite artists. Kristy  Rouse and Maggie Wilkinson.                       

Kirsty winter scene is Acrylic on aluminium and is a beautiful piece.

Maggie paints in watercolour and are also amazing.                                   

So kind of them both to donate original works. please contact lifeafterlary@gmail.com or on the form below.  These are donated pieces to help us here to continue to support patients in any way we can. through care boxes or a dressing gown. every penny will go back to the patients.

There is no set price but please email us to make an offer.

thank you again Kirsty and Maggie 


THROAT CANCER FOUNDATION AMBASSADOR, JON ORGAN SHARES HIS DAILY ROUTINE HE UNDERTAKES TO LOOK AFTER HIS STOMA.

Jon Organ, 57 year old, family man, from the south of England was diagnosed with stage 4 laryngeal cancer in late 2022.   After having to have a laryngectomy and enduring several tough weeks of chemotherapy and radiotherapy follow up treatment, Jon was fitted with stoma.

It hasn’t been the easiest of journey for Jon and his family, not only dealing with the shock of a throat cancer diagnosis, the physical impact of the treatment, as well the emotional impact of having his voice taken from him.   But despite this, Jon is disciplined and gets on with what he needs to do to look after himself on a daily basis.


GEORGE AND RILEY COMPLETE 10K CHALLENGE WHILST ENDURING TORRENTIAL RAIN AND RAISE A FANTASTIC £465

After their family friend Jon Organ, was diagnosed with a throat cancer in late 2022 and subsequently had a laryngectomy, 15 year old George and 14 year old Riley felt moved and compelled to support him.   So, they set themselves the mammoth challenge of running 10K.

They set a date, got Throat Cancer Foundation running tops and got into training for their event.  Little did they know their part of the UK was forecast to have heavy rain for their chosen day!

Unperturbed, the boys knew how important this was to Jon, his family and were driven to support anyone dealing with throat cancers.  Even a little rain was not going to stop the boys completing their challenge.

After the boys returned home, they explained, “It was a great run and for a great cause.   We are really happy we done it and raised a lot of money for the Throat Cancer Foundation”.

Speaking after the event, trustee Gordon Dow, of the Charity said, “We too are both proud and grateful to George and Riley.  These young men saw what their family friend Jon has endured, from his diagnosis, his laryngectomy and chemo and radiotherapy treatment and rose to the challenge”.

“The boys did this because they too don’t want to see anyone else go through what Jon has gone through.   This is why we will use their money raised as part of our media awareness campaign.  To help people to be on the look out of for early signs of throat cancers and get themselves treated quickly.”

“The money these two young men raised will directly help save more lives.   That cannot be underestimated”.


JON ORGAN’S EXPERIENCE OF LIVING WITH A LARYNGECTOMY

I wake at 6 am load my nebuliser mask up and sit for 1.5 hours to clear my trachea from the night’s dryness.  This allows me to breath.

Once done, I then moisturise a lot on my head, face, and neck.  I change my base plate that holds my Heat Moisture Exchange (HME) on to the throat, which enables me to talk. Clean around the stoma and neck.  Warm baseplate and attach to skin. Fit my HME.

Next, I wash my face and brush my teeth using super high fluoride toothpaste. Get dressed and ready for the day.  Then at 9am its time to take my first dose of medications. Three different opioid painkillers and several others.

Breakfast is porridge. Catch up on the news and social media. 11am my physiotherapist and exercises for shoulders and neck.  Once finished I use my nebuliser for an hour, follow by more medications.

At about 1pm I try to for a walk just for about 30 to 60 mins or Nicky, my wife will take me for a drive.  Then by 2pm I lay down for a nap until about 4pm.  Once awake it’s the nebuliser for hour, then more medications and some dinner at 6pm.

Later in the evening its shower time.  I have to change the HME button in throat for a shower valve.  Nicky will fit me with a waterproof shower bib.  This is to stop any water entering the trachea through the exposed hole in my neck.  She helps me undress and then into shower.  I don’t stay in long as I get nervous regarding the bib and the shower valve.  Nicky helps wash my head and neck as I cannot raise my arms that high.  Once out she will help me dry and moisturise the skin around my throat and shoulders.

Final part of the day and my routine is the base plate to my trachea will be changed to a night-time base and HME.  I then try to watch television for an hour and take more medications.  Including all my night-time opioids and lidocaine (local anaesthetic)

 

patches for my shoulders and neck that Nicky puts on me.  I then nebulise for 1.5 hours then try to sleep.

I do get a bit of computer work done while I am using my nebuliser so that’s a positive to keep my mind active and it won’t be forever just while I’m healing. I will probably always do this at least once a day.  My medications are currently at 22 a day, they were 30 so I’m reducing.

The most fun filled day but keeps me breathing. As well as this I fit in hospitals and doctor’s appointments.

Thanks…

PS…I have not gone into the role of the nebuliser and secretions as it is not very nice but if I don’t clear there is a risk of a mucus plug that could be fatal.