Our Stories

Uplifting stories can lift you too

If you have been recently diagnosed you may feel that you are staring into a void – what do I tell my children – will I be able to continue in my job? Many of our members have experienced similar feelings and they have allowed us to tell their stories in their own words.

My Funny Grandad

During my career as a specialist head and neck speech therapist, one of the many situations that came up regularly was the patient’s fear of how children – especially grandchildren – would react to Grandad’s new voice following surgery to remove his voicebox (total laryngectomy). I always found that children were amazingly accepting and fascinated by the new sound of Grandad’s voice. They were curious and interested in finding out how it worked. 

Whilst the medical team always explain to every patient and their family the mechanics of the surgery and the subsequent changes to everyday life that will occur post-operatively, sometimes the younger children do not understand, or fully grasp the reality of the situation. 

This can result in worry, fear and anxiety on the part of the child. There are usually many questions, such as: “Why does he have a tube up his nose?”; “Why does he have a hole in his neck?”; “Why does his voice sound different?”; “Can he eat?” 

Families are pitched into a new world and have many adjustments to make. Our instincts are to try to protect our children from difficult or painful subjects  and explaining it all to younger children can be very demanding and complicated.  There are many books and leaflets detailing what laryngectomy surgery entails and its implications, but very little is targeted to reassure and explain to children what will happen to their grandparent. 

This is why a new book: The Story of Funny Grandad would be so helpful to families in this situation. The story is set around two main characters: Jessie, the granddaughter and Grandad’s dog, Pickle.  

The book is beautifully illustrated and explains step-by-step about how Grandad became ill, his operation and seeing him afterwards in hospital. It also answers many questions that the grandchild may have and reassures them that after some rest and recuperation, Grandad will get better. 

To receive a copy of the book, please send an SAE (size at least 230mmx230mm) and bearing a large letter stamp to: Cancer Laryngectomee Trust, PO Box 618, Halifax HX3 8LWX 

The book is free – but a voluntary donation of £10 to the Cancer Laryngectomee Trust to support their work would be much appreciated. It’s also possible to download a digital version. Log on to: www.cancerlt.org. On the website in the left hand panel of the home page you will find a link to The Story of Funny Grandad. 

I hope this information is valuable to some of our members. Please do let us know if you find it helpful. 

Jan Humphries 

A Cough Too Far

Earlier in October on a wet Sunday afternoon, I travelled to The Capitol Theatre in Horsham with a friend to see a film about Mexican artist Frida Kahlo in the aim of improving my understanding of innovative paintings (she says!). My friend and I observed all The Capitol’s strict rules about social distancing, hand washing and face masks. Unfortunately, I succumbed to the temptation of a cardboard bucket of salted popcorn to munch during the film. Big mistake!

Sitting down for two hours without moving and wearing a mask resulted in a coughing fit as I attempted to swallow the popcorn. Although I tried desperately to stop my spluttering with water, other people in the audience were obviously becoming concerned that I could infect them with Covid! Embarrassing isn’t the word. Luckily, the audience was small and I was able to reassure them that my spontaneous coughing was due to swallowing difficulties after I was treated successfully for a neck cancer in 2013 – and it had nothing to do with the virus. I hope they were reassured. But I stopped munching and took my bucket home to enjoy later with the cat (along with private spluttering). The cat understood.I wondered if anyone else has found themselves in awkward situations likethis – wearing a mask for long periods of time in indoor spaces? Would love to hear how you coped!

Mary Bishop Pinn

Editor: for useful advice on what to do if someone is choking please follow this link: https://www.nhs.uk/common-health-questions/accidents-first-aid-and-treatments/what-should-i-do-if-someone-is-choking/

Charlie’s Story

“My Story” in Charlie’s own words

Some people have been very compassionate and treated me well while others have been scared by my voice and me having to press my neck to speak, but once they get used to it, it’s not so bad. So slowly but surely, I have adjusted to my new circumstances, and the fact that I am still alive is a bonus. 

I have found that positive things do happen to positive people. It’s amazing the inner strength we have within us all to get through such nightmares (such as cancer). I suppose you either fight or give up: there are only two options. I couldn’t give up because of all the looks on the faces of my family willing me to keep on fighting. I am going to live in the moment and try not to worry about the future. We only have one life, so we owe it to ourselves to make the best of it. 

The cover of Charlie’s book

Surviving Neck Cancer – My Story

IT was just into New Year 2013 when I noticed a lump had appeared on the right side of my neck. It didn’t hurt at all, but I thought it a bit odd and decided to get it checked out by my GP. 

She took one look, gave the lump a poke and was immediately on the phone to the hospital asking for a referral that afternoon. I wasn’t unduly worried at that point, as I thought it could just be a cyst or something. But the subsequent biopsy showed I had a Stage2/3 squamous cell carcinoma. 

I always remember the consultant’s blunt words: “Yes it’s cancer – it’s malignant and it’s a secondary” as he gazed at a computer screen. No comfort words.  I emerged from the consulting room very dazed, and the nurses literally rushed over to support me. I think they knew the diagnosis beforehand and I’ll never forget their kindness and empathy. 

I had to tell my two adult children. Right from the start, I decided to adopt a positive attitude towards the situation, and was determined not to frighten them unduly. My late husband, however, wasn’t really capable of coping very well with the fact that I was seriously ill. But that’s another story as he was fighting his own mental demons at the time. 

After many tests and minor procedures, I was finally admitted into hospital around Easter 2013 and underwent surgery to remove the lump. I remember waking up from a lovely sleep, and then seeing the operating surgeon the next day on the ward. Again, I remember his exact words: “Well, we went in there – and the lump was ‘orrible!”  

Charming!  Anyway, I was then put on a necessary regime of radiotherapy and chemo, which went on through most of that summer.  The radiotherapists were so good and kind to me and everyone else in the clinic. I made friends with fellow patients!  I couldn’t have asked for better care, even when the radiation caused painful blisters around my neck, along with extreme fatigue.  All the staff kept me going throughout the six-week daily treatment and they were fantastic. 

Once a week I had to have chemo, which wasn’t so good. Staff were obviously overwhelmed by the number of patients being hooked up to chemo drips at the same time and I did spend some miserable hours sitting in a chair, surrounded by other miserable patients. Not good for morale. 

Eventually, I was discharged and had to report back to the out-patients hospital clinic for regular check-ups. By this time, I was beginning to feel rather depressed, as I felt so tired and frankly, worn out from all the treatment and surgery. 

One day, however, I was sitting rather morosely in the out-patients department when I was approached by Charlie and Jackie from Second Chancers, offering post-operative emotional and practical support for people like me. 

Don’t need to say much more. They introduced me to the group and I’ve gained so much help from everyone I’ve met. 

It’s now just over seven years since my diagnosis. I’m always going to feel a bit guilty because I was a smoker and that must have been a main factor as to why I developed cancer. But – I was a child of the 70s and 80s – and it was cool to smoke then. I was advised not to beat myself up too much! 

Thanks to the amazing skill of surgeons and the subsequent radiotherapy and chemo, I am still going strong. 

But it’s the post-operative, on-going support which has been so vital in recent years. Yes – I have side-effects from all of this. I have big difficulties swallowing and my teeth rotted away. However, I now have a good set of false gnashers – and have worked out my own way of combining solid food with liquid supplements. 

I know I couldn’t have got where I am now without the support of dieticians, speech therapists and all the other post-operative therapists who have helped me to enjoy a very good quality of life. Many, many thanks to you all. 

So – there is definitely life after the Big C. And to cap it all – I became a granny in September to a beautiful baby boy. Whoo!! 

Alison Parish