Gary's Story - Part 1

UPDATE: Gary's Marathon experience.

A week before the marathon I started to feel slightly nervous, I think this was more to do with the unknown, things like getting my running pack and number, getting hold of Tim's number as Tim had stepped in at the last minute as my support runner.

Luckily enough I was staying in London for work on the Tuesday night and, as the Expo opened on Wednesday, it meant I could go and collect my running number. At this stage I was feeling excited but also nervous, there were a lot of other runners collecting their marathon packs. It was at this point it really started to hit home that I was going to be running the marathon on Sunday. I needed to pinch myself as I couldn't really believe it was happening. I think I was strolling around the Expo with the biggest grin on my face, I didn't really take in the stalls etc I was just floating with excitement.

On Friday the whole family travelled to London, this was hectic as I needed to make sure I had all my running back packs and equipment, my medical nutrition and medicine for the full weekend etc as there would be no turning back once in London. On Saturday I was just hoping to just relax and take the family shopping and sightseeing as they have never been to the capital.

Nutricia had mentioned there may be a bit of publicity but I couldn't believe it, the family and I were in Harrods when the Mail on Sunday phoned wanting to do an interview and take some photos of Tim and myself in our running gear. I hadn't met Tim at this point but as soon as I did he was such a nice guy; it was almost like we had known each other for years.

After the photo-shoot we changed and went for something to eat, well Tim and my family ate! We chatted about what we had overcome as a family in the build up to the marathon, as well as practicalities for the race, the location of the bag swaps etc. I explained how I had planned all this on paper, if it would all come together on the day would be another story. 

We had a plan of attack for race day. It was an early start at 7.15am to catch a train to the start line. It was all very straight forward as staff at the train station guided everyone to the correct platforms for the different starting points - we needed to make our way to the blue zone. Once we got off the train the whole atmosphere was overwhelming, just walking to the start area everyone seemed so happy.

I couldn't relax I just wanted to get to the start line and run; I felt like a kid in a candy shop! Watching others stretch, put sun cream on due to the weather, even sun bathing, I can't put into words how I truly felt, I just couldn't keep still taking it all in.

The time came to get into the right area to start the race and the nerves just disappeared. The start was upon us and, after months of training, I just wanted to get going. My only concern was whether the pump would keep working and provide me enough fluid. It was extremely warm and predicted to be the hottest London Marathon on record.

Before we started Tim set my pump running and this was the beginning of the race for me. Once passed the start line you could see the crowds and hear them cheering everyone on, I didn't think about my running speed I was just taking in the atmosphere, giving high fives to everyone in the crowd, it was great not thinking about what was ahead or the weight of the back pack.

After the first 10 miles I start to think about the first pump exchange, my wife was due to start the pump in the spare backpack as soon as she saw us coming towards Tower Bridge. I disconnected my pump and start taking it off my back. The swap went well and I put on the new backpack and connected the tube as I ran. Tim was great, providing water for me to put over my head as it was getting hotter and I was really sweating - I think it was coming out quicker than my pump was putting the fluids into me.

I was feeling really positive and our pace was still on target to come in in under 4 hours. You can't imagine how the support from crowd can help carry you, I had my name on the front of my tee shirt and the crowd just calling my name lifted me to carry on.

When I hit the WALL at 20 miles my legs just didn't want to go any further but Tim helped me to keep going even when I slowed down and stopped a few times. Tim's encouragement and the crowd shouting my name made me want to carry on no matter how much pain I was in and I was in pain.

Around 21 miles Tim and I swapped backpacks, which went smoothly. I was administering energy gels through a syringe via a giving set into my stomach, but my legs really didn't want to go anymore and I doubted if I was going to make it. Tim kept pushing and encouraging me as the final miles slowly went by. I realised I wasn't doing this just for me, I was doing it for everyone in a similar situation to me and that gave me the determination to keep going. Then, at around 23 miles, I came across my wife and family and just seeing them gave me a lift to keep going no matter what.

The last mile was the hardest, my legs really hurt, plus my ankle which I had broken in January was throbbing, that last mile just never seem to end but, as before, Tim and the crowd seemed to push me onto the finish line. Seeing the finish line was so rewarding knowing that everything I had trained for had finally paid off, there were so many emotions all at once. I received my medal and my t- shirt and I just couldn't believe I had completed 26.2 miles. The London Marathon!!

I collected my bag and met my family, I was lost for words and couldn't really believe what I had just done. I went to meet other supporters from my running club (Sowerby Bridge Snails RC) and pass on congratulations to other runners as they passed, it was such a fantastic feeling. Talking to other runners about how hard it was in the heat and how they felt, I got such a buzz from the atmosphere. The worse part was trying to walk as my legs had completely seized up, I found it easier to jog than walk.

For days after the marathon, apart from trying to walk, I was on a high, telling others about it, reliving the event, and keeping the feeling of excitement. It made me think that I can do a marathon in under 4 hours now, I didn't quite make it in London but for my first attempt, 4hrs 15 mins wasn't too bad.

I have entered the ballot for 2019, I hope to get a place and continue to raise money for PINNT.  I have entered the Great North Run which is 13.1 miles later this year and the Yorkshire Marathon in Oct, for both these I have applied to the Guinness Book of Records to be the first person to run 13.1 & 26.2 miles being enterally fed, fingers cross. I am also walking the Yorkshire 3 peaks in June/July.

My doing the London marathon, I hope has raised the profile of PINNT and how they support people who are tube fed etc, as well as how well Nutricia Homeward have really supported me above and beyond, really going the extra mile.

I plan to carry on promoting PINNT when I do future runs. My big aim now is to complete the main 6 major marathons Boston, Chicago, New York City, Berlin and Tokyo - London already done!

Gary, a 45-year-old electrical engineer from Halifax, was diagnosed with a benign parapharyngeal schwannoma, a non-malignant neural tumour close to his salivary glands. He now feeds through a low profile gastrostomy (LPG) tube. Yet Gary is living proof that “it is possible to live a relatively normal life while tube feeding. You can do anything you used to do”.

Gary remains a keen footballer, belongs to a running club and, remarkably, is entered for this year's London Marathon - one of the few, if not the first, to compete with a gastrostomy tube. He hopes his story will inspire other people who need to tube feed to live full and active lives. “If I can do it, anyone can,” he says.

When he was diagnosed, Gary didn't feel ill. “I'd always had a 'lump in my throat'. I sometimes found breathing or swallowing difficult and I snored heavily. I'd been told it was my tonsils but, as I don't like hospitals, I didn't have them removed. After I suffered a groin injury playing football, the doctor checked me from head to toe and discovered the schwannoma”.

The father of two says: “Initially the doctors were not sure whether the lump was benign or cancerous and I was really worried. We tried to keep things away from the kids until we knew the results, but it was still hard telling them. To make matters worse, I was really worried about work and the possible financial impact of the diagnosis.”

Originally the medical team told Gary that he would need nasogastric tube feeding for six weeks while he recovered from the operation to remove the schwannoma. He was not, however, able to cope with the nasogastric feeding and received a radiologically inserted gastrostomy (RIG) tube. Gary's inability to swallow safely persisted and he had a low profile gastrostomy (LPG) tube fitted about 18 months ago. “I was very weak at the start, but my weight is increasing and I'm getting stronger,” Gary adds. Originally weighing 16 stone before the operation, his weight fell reaching a low of 11.5 stone, but is now steady at about 12 stone.

The doctors haven't been able to find a medical reason why I can't swallow, so the speech therapist gave me some exercises to help strengthen my muscles,” Gary says. “I can now swallow custards, some thickened foods and yogurt - although I need to take my time.”

“Gary has come a long way in the last few months. Initially, he could only eat a teaspoon sized amount in 20 minutes - he can now eat a pot of yogurt in the same time,” says Colette, his wife. “We've come to terms with the fact that Gary probably won't eat a full meal again. So, anything else is a bonus.”

Gary is now even more active since he became established on gastrostomy feeding than before his diagnosis. Nevertheless, Gary and Colette had a lot to learn, even though they had a head start. “I'm a teaching assistant at a special school.” Colette says. “Many of the children at my school are tube fed so I already knew a fair amount about tube feeding, such as how to use the pumps. It's still been a steep learning curve and we needed a lot of support at the start.

“Unfortunately, while we were relieved when we were told this wasn't cancer, there is far less support for benign tumours than there is for cancers,” Colette comments. “Very few websites offer information and there are no dedicated support groups we can turn to.” Collette spent hours on the net, but found that most of the information about tube feeding is aimed at children. To help meet this need, Nutricia's website http://www.tube-feeding.com answers common questions adults and families have about tube feeding at home.

In addition, the Nutricia Homeward Service and the Nutricia Homeward Nursing Service offered Gary and Colette support and advice. “It's reassuring to know there is someone I can ring if I have any problems,” he says. “We know we can turn to our Nutricia Homeward Enteral Nurse Specialist for anything, she is always there and has been a huge support.”

“It's nice to know that, as well as Gary, I can phone her,” Colette says. “We know that if there is a problem that can't be dealt with over the phone she will come around as soon as she can.” The Nutricia Homeward Service ensures they have sufficient supplies and they plan to use the Nutricia Homeward Holiday Service when they go to the Canary Islands later in the year.

The impact of tube feeding has been much less than we expected at first,” Colette adds. Nevertheless, Gary took time to adjust emotionally to tube feeding. “I didn't want to leave hospital; I was very frightened and worried about coming home,” Gary admits. “I just didn't feel safe and I worried about aspirations.” Colette says he had panic attacks and needed several return visits to hospital.

Now things have settled, I'm able to get out more. I'm back at work and I can focus on keeping fit,” Gary says. “Tube feeding has given me back the ability to have an active life. I can do everything that everyone else can do.”

Gradually, tube feeding has become part of the family's life. Gary used to go to the gym or practice his physiotherapy when the family was eating. He is now happy to bolus feed around his immediate family.

Colette adds that “Gary was always a bit of a foodie” - and he can still find mealtimes difficult. “When other people eat, I tend to grind my teeth as if chewing,” Gary says. “The smells of food are still tempting and make me want to eat.” But while Gary misses eating and drinking, he now feels comfortable joining his family at the table and chatting while they are eating. “Colette even bought me a wooden Christmas dinner, complete with cheese board and chocolates,” Gary says. “It cost as much as a real Christmas dinner, but at least it'll last for ever.”

I'd love to not have to be tube fed and to have a cup of coffee again,” Gary concludes. “But I'd tell people who are starting to tube feed that it isn't the end of the world. Don't just look at the downsides. You will sometimes feel down. You will sometimes feel afraid and you will come across hurdles that you need to work around, but you can do anything you used to do. I still work. I still play football, and I've run the London Marathon.”