Life after Lary – Jon describes his daily life after Laryngeal cancer

As Jon’s Instagram takeover for World Head and Neck Cancer Day comes to an end, he brings us up to speed on what life is like now and tells us about the launch of his https://www.lifeafterlary.co.uk/ platform, which he created to help fellow patients.  

Swallowing is redefined

Your swallow has all but been removed because of cutting you are left with about 10% of swallow muscle ability. Eating is a challenge with every meal, and it takes twice as long to eat. Every bite must be very small, well chewed and eaten with a lot of water. Gravity when eating is your friend. Now though I eat all foods. When drinking I now always drink in smaller amounts and not big gulps. The TEP is great thing and allows me to speak but it leaks and must be changed from time to time. Could be 2 weeks or 3 months but I would say the average is 8 weeks. You come into hospital, and it is changed. All takes about 30 mins in total. This is why some opt to use the electro larynx. This does not need a TEP to work so no need to have the maintenance it requires or the leakage. It is a choice thing and for me being relatively young and fit I can take care of things so opted for the TEP. If it leaks it leaks straight into the lung and it makes me cough. A lot. Also, whilst I am here taste is difficult. As Laryngectomy’s we have had our sense of smell cut this makes tasting of food difficult. Some foods are better than others you just must learn what works for you.

Breathing & Speaking is strange to start with

Breathing is very strange as you just breath as normal but slower and deeper. You breath through the stoma. In fact, you do everything through the stoma. It is all very strange and hard to describe. Nothing is fully natural anymore and everything must be thought about first, but I am sure that will get better. Talking is another strange feeling. You bring air up from your lungs like never before and push so hard out to get the speech. Yes, it is harder and more difficult but hopefully it will get better with time. I have recently started hands free talking but once again this is so so hard. I will do a little everyday until I become stronger.  

Sleeping can be challenging

Sleeping is a challenge as I sleep upright. I use a v pillow that Nicky got for me. I can no longer lay flat. Same reason why I cannot bend over. There is nothing there in my body to stop the contents of my stomach from coming straight up. Sleeping can be disturbed with waking to clear but Atos have provided me with a night-time HME that gives me more moisture so helps loads.                                                                           

Other things that effect my day-to-day life 

Sorry to say it but constipation is a thing. This for me is made more difficult as I take opioids and iron medication. So laxatives are taken all the time. Laryngectomy patients do not have neck muscles and neck muscles are needed to poo. Or to bear down. Sorry to be so graphic but its life. Effects on HME,s going out. Wind or heat or sun or damp etc etc all effect the HME. I carry an emergency bag wherever I go. This is for clearing and cleaning when out. Also, I have different HMEs to change if needed. Laryngectomy patients always carry and emergency bag.

Swimming is another thing. As larys we no longer swim. Too dangerous. There is a set up that allows you to but few do. washing or taking a bath or shower are new barriers also. It is all difficult, but showering is better than a bath for larys. If you slip under in the bath, you are in trouble of drowning. In The shower I use the Atos shower adaptor. It is like a small upside-down snorkel that clips to the base plate to keep water out of the stoma. Showering is a whole new ball game as is cutting my hair. A tight elastic bib is worn as well as the snorkel when I cut my hair. To have a shower is an hour of messing about. Nothing is just a quick anymore. A quick wash. A quick shower. A quick bite to eat etc etc. nothing is quick. Everything I do is planned.  

Peer support is super important

Once I was diagnosed in this mad journey, we sat down to start investigating the whole thing. It was so hard especially finding laryngectomy patients who could speak with some experience. We found a video online that went through the procedure and eventually we found a guy called Doug through a FB site that was dedicated to throat cancers. I contacted him direct, and we started chatting. He is still a good friend.

With that in mind I decided to start a video diary blog type of thing for the laryngectomy community that now has over 300 followers all asking questions and some that I mentor going through different stages. I do not know it all and I still learn every day. If I do not know the answer, I will say but because I have been through the situation, I can offer some help. I have been told I am a great help and have good feedback. I decided at an early stage I would never hold back on an answer if I was asked a question. It is also a platform for myself to share how I am feeling and keep my family and friends updated. So 300+ followers but plenty more watching in the wings as the videos reach about 900 views on average. As long as one person gains help or comfort from it then I will carry on doing it.

My story cannot be in vain. I will not accept I just got cancer and had to have a laryngectomy. There (in my mind) must be a reason. My reasoning is that I have been chosen to help others. I accept that as my new role in life. It probably helps me just as much as others to accept things like that. We have already met some fantastic people along the way and not just sufferers but doctors and nurses plus the atos team to name but a few. During the whole experience there have been good and bad points as there always is in anything we do daily. This experience to us has been kept in a diary form so we probably did look at things closely.

So here we are today, and we just try to get on with life as best we can and know how. I grow stronger every day and we grow together with our new life every day. The whole thing is a massive life change and coping with that puts a strain on everything. I was dealing with a lot of pain and worry. I was very grumpy to be honest. I should have come home and gone to bed and rested. But I didn’t. Lying in bed is not me. Things did change overnight, and Nicky and I had to change with them and quick. I am loads better now so a bit better to live with which has made life easier all round.  Nicky helps loads with my day-to-day needs. I no longer work as such, I was a hands-on builder but also a trained Health & Safety officer. Can no longer drive in any case. But work from home mostly and from photographs. It is not what we wanted but it’s what we do.

Thankfully I have a great loving relationship with Nicky. I don’t know what I would do without her. I was worried that the grandchildren would be frightened but not so. The older ones just asked questions and the younger ones just took it in their stride. I have one grand son who has a bunny called button bunny. He has been on the atos FB site. They look at grandad and move on. One or two have asked to push the button etc. my worries were for nothing.  In some ways it is good that the operation and start of recovery was in the dark winter months. This bit is continued in the sunshine and going out for park visits is lovely. Something I so enjoy. We do not go far and more often than not sit in the car and have our tea and cake, but we do get out and feel the sun. I am sure I will get used to the sun and the wind and rain again. Not because of my breathing but because of it is good to feel it.

It all feels different now. I guess without being dramatic when you come close to death. Then in hospital for 14 long days. I then stayed in for some time at home. Sometimes I stand or sit outside and just feel and look at nature. We are all so lucky to be here. I am sure that feeling will pass in time and go back to just taking it for granted. But next time you sit outside and pick up your phone DON’T. just sit in that peaceful moment and enjoy.           

Jon highlights the importance of being aware of the signs and symptoms of Head and Neck cancer, and the importance of going to your doctor if they persist for longer than 3 weeks.

ED – Following Jamie Theakston´s announcement on Instagram of his treatment for Laryngeal cancer, Jon was interviewed by The Daily Star and offered advice and support to Jamie and his family.