To mark our first year of marriage Rachel and I have decided to jump out of a plane at around 13,000 ft – no it isn't a reflection of how we feel after after a year of matrimony but more to mark what has been an amazing chapter in both of our lives.
We have therefore chosen to jump for two charities which mean a lot to both of us. I will be jumping for HNCUK - Head and Neck Cancer Coalition in recognition of their amazing support given to one of my best friends Andy Gale who has come through a traumatic journey after being diagnosed with cancer of the jaw at the age of 46 – read about his brave and inspiring journey below.
Rachel will be jumping for Bowel Cancer UK in memory of her dear dad Donald Probets who sadly passed away 27 years ago due to bowel cancer and also to mark her 60th Birthday.
Many thanks in advance for any support you can give.
My name is Andy Gale. I was diagnosed with mouth cancer, when I was 46 years old. I’m not a drinker or a smoker and I stay fit by riding road and off-road motorcycles.
I went to the dentist in November 2014 with pain at the rear of my mouth on the left-hand side. The dentist said it was an infected wisdom tooth and I needed an X-ray before he could remove it. The X-ray machine was not working so I was told that they would call when it was back up and running. Three weeks passed and I was in for the X-ray. Upon arrival I was told the X-ray machine was not working again. I asked to speak with the practice manager and she kindly got my X-ray done at another surgery that day on the other side of town. The tooth was removed a week before Christmas. I was told the hole would heal over after a week to 10days. After 2 weeks and still in pain the hole had not healed. I was told it was a “dry socket” and I made another appointment. The dentist then used a scrapping tool to reopen all of the tissue to stimulate the healing process.
A week later still no healing and more pain together with thrush of the mouth around the affected area. On the next visit I was told I would need an appointment at Musgrove.
If my memory serves me correctly, it was early February when I had the Musgrove appointment. It was very apparent that the second the dentist looked into my mouth I knew I had a problem. The dentist asked for a biopsy to be taken.
10 days later I had an appointment with the miracle worker Mr Graham Merrick (Surgeon). I knew the second I walked into the room and there were 6 different people waiting to see me, I was in trouble!
It was explained in great detail what the issue was. I had stage 4 squamous carcinoma of the mandible. And it was also explained what going to happen next. The possibilities ranged from scrapping the gum and the top part of the mandible being removed, to full removal of the mandible and a replacement bone (tibia) to reconstruct the mandible.
It is my personal opinion that if the dentist had been trained in looking for oral cancer it would have been diagnosed earlier and possibly my mandible may have been saved? The fact that from the time of the wisdom tooth being removed to my diagnosis was 3 months, in my opinion played a part in the cancer getting into the bone.
I was admitted into Exeter hospital on a Thursday. All I knew was that there was a chance that half my jaw would be removed and replaced with a bone from my leg. So, I slept on it for 12 hours and Graham fixed it for me! I woke up in high dependency unit and promptly vomited, this I think could have been the reason for the graft failure.
Once on the ward you just have to go with the flow. You’ve never had this before and you don’t know what to do so just do as your told.
After a few days it was obvious the graft was infected so off to the theatre for the removal before sepsis kicks in.
In total I was in Exeter for 6 weeks and on a feed tube for 22 hours a day. The care was second to none. All the staff were caring and empathetic. I couldn’t have asked to be looked after better.
Learning how to eat again is very challenging. The speech and swallow nurses were fantastic. But it was quite daunting working out what you could and could not eat. The jaw would only open maybe 10mm due to the trismus. Later I found a way to sort it so I could eat larger pieces of food. It wasn’t the traditional way you probably would recommend; however, it meant that I could fit a custard cream in my mouth!
Finally, I was allowed home. This is when you start to realise the magnitude of what has happened to you. This 6-week period consisted of trying eat as much as my jaw would allow in preparation for the remedial treatment which was to follow.
I asked Graham not to sugar coat what was to come and his words were “if you think the operation was bad, wait until you get a load of this!” As you are young, we are going to give you the best of the worst we have to give you the best chance for the future.
The plan was Chemotherapy once a week Cisplatin and Radiotherapy 5 days a week.
I had a mask moulded for my face so I could be fixed to the radiotherapy table for accuracy. So, the first 3 weeks I was thinking what everyone was talking about in was sailing through. Week 4, different matter. As I was warned the treatment started to bite.
I was told that the treatment may have to be suspended as it was aggressive. I was determined not to stop the treatment. So, I guess in a way I went to war with the treatment. I was determined the cancer would die before me. I found foods and sports recovery drinks to maintain my strength and I gained weight through the treatment, so the dietitian was most pleased!
Then the mouth ulcers arrived. This meant that eating solids was difficult, so I switch mainly to baby food and recovery drinks.
I arrived at the last day if treatment think I’ve done it. Only to be told it will keep getting worse for another few weeks, and they were right. My mouth felt like a grenade had gone off in it. The only relief was sucking on ice and an ice pack on the outside of my face.
If I’m to be honest about the remedial treatment. It was far harder to deal with than the operation. It’s very hard to keep putting your hand into the fire and saying to yourself this is making you better. It’s very counter intuitive. Paradoxically being counter intuitive helped deal with the side effects. For example, eating when I felt sick or going for a walk when I felt at my weakest. This approach may not be for everyone, I can only tell you how I dealt with it. The thing I knew I had to do was fight fight fight.
Never did I feel so supported by my family, NHS, friends, customers and strangers. However, it was the loneliest time of my life. It dawned on me that even with all the support in world, you are totally on your own. There is no space for self-pity all you can do is fight. It’s down you and you only.
Where I think the post treatment could improve is in supporting you after the event.
I believe it’s akin to going to war, and when the war is over, it leaves you not sure what to do next? The adjustment back to your new normal life is a huge challenge. I think there should be some more mental support post illness. This is when the shift from victim back to be the master of your own destiny begins. This transition a difficult time and would be different for every patient.
I think this is where survivors come in. No one can know how it was unless they had been there themselves, so by definition they can be the best help.
It’s my belief that us survivors could be a huge asset to the newly diagnosed patients. It can help with the fear and the uncertainty that we all feel when first diagnosed.
I and my family will always be forever grateful to all those people that helped me through this stage of my life. They have allowed me to continue with my life, trying to help others and see my family grow up.
If I can help even in the smallest way to make the smallest difference to another person’s experience, it will have been worth it.
So that’s me living the dream! Every day.