Gary's Story - Part 2

I couldn’t believe we had done 70 miles in 23 hours even if the last 26 miles had been walking and limping.

Gary and the Hadrian's Wall challenge

After taking on the first 15 miles to pitstop one (Lanercost), I arrived with a limp and severe pain in left ankle. Once I was able to take off my trainers, I found the plastic support at the back of the trainer had popped out and dug into my ankle bone, which was the cause of the limp and the pain was unbearable.

A change of trainers and some foot protection was necessary to help me carry on. At the same time, I had a 200ml bottle of 2kcal. During the run/walk I was also taking on board some electrolytes, plus some energy gels.

Off we went to our next pitstop, which was 9 miles away. This didn't seem too bad but as I set off my thigh muscles had seized; it took a few moments to get going. I left my wife as she headed off to the next pitstop with all my food and supplies and as I limped and ran, I wondered how I would make it for the rest of the race if my ankle got any worse, all I could think was, 'it's ok to walk'.

Pitstop 2 - 24 miles down

We made it to the second pitstop (Walltown Quarry 24 miles) my ankle was not any better and my thighs were hurting; I think I must have been slightly adjusting my running style, which put strain on my thighs.

My wife asked me if I had seen the wall yet? I said no, we had done 24 miles by this point and not come across the wall, was unsure where it was on this route but could wait to see it.

My wife looked at me and said, “you don't look good”, I admitted I didn't feel great. I decided I needed more food as I must have been burning a lot more calories than I was getting. This meant we had to stop for a bit longer for me to take on some extra food even though my stomach really didn't want any more fluids. I had to push them in so I could carry on; this made me feel sick, but I didn't have any choice if I wanted to carry on. A change of T-shirt, the last one was soaked in sweat, and we were off.

As we set off, I left my pump turn off to give my stomach a rest from all the fluid I had taken onboard. At this point I had a bad ankle, thighs that didn't want to lift my legs to move forward and we still had 46 miles to go - oh dear…

One bit of good news was that we only had 6 miles until the next pit stop at The Sill, 30 miles into the race. The other good news was that we finally came across 'The (Hadrian's) Wall'!!

Up and down the hills we went, over stiles, up steps, up more hills along beside the wall, then down for a while and them up some more. All of this was killing my ankle and thighs, I really struggled on this 6-mile route and said I never wanted to see any more of Hadrian's wall. It wasn't what I needed at this moment; my legs were really struggling. Once we reached the pitstop I was advised the short 6 miles was the longest time between all 3 pitstops. My legs didn't want to move, blisters had started to form between my toes on my left foot. Typically, it had to be the one already in pain, however the extra food had help pick me up so I did the same again at this pitstop, by taking extra food I was hoping it would give me the push to the next pitstop, which was 14 miles away.

We set off again, pushing through the pain to keep running. We came across some lovely runners, all doing well and pushing through their own pain barriers to try and get to finish line. This section was 14 miles, but we seem to get through it without too many issues. There was just one problem to add to my list of injuries, my left shoulder! I had popped the AC joint and. with all the weight of the backpack. It started to cause some issues and was sore to touch. I tried to tape it up to give it some support, but it made no difference.

The pitstop at Hexham was the place where those doing the race over 2 days would stop overnight, at this point I wished I had opted for 2 days. I found some ice on the field thrown away from a drink, I put my feet on to the ice, it helped to ease them and made them feel great!

We stop at Hexham for about 1 hour to get some food for myself and my running partner and took a short break before setting off into the night section. We had to make sure we had our head torches and thermal tops, or we wouldn't have been allowed to leave the pitstop without the required gear on the mandatory kit list. The organisers stopped us and made us empty the backpack to show we had the correct kit, at this point I needed to pump my energy multi fibre nutrition 1000ml bottle to get more energy into me.

After we had walked for about 2 miles, I switched off my pump to get ready to run but my running partner was unable to carry on running, he had 2 large blisters on his feet, running just wasn't an option so we would have to walk the 17 miles to the next pitstop. This was hard going for me as I was limping and having a lot of pains in my shoulder. At this point it was also a mental struggle, walking through the night feeling like you couldn't move anymore.

Pitstop 5 - 9 miles to go

Pitstop 5 Newburn only 9 miles to go! After walking the 17 miles, it was so nice to stop, take off the backpack and my trainers just to relieve my aching body. We had come so far and were so close we had to push on for the last 9 miles.

We left for the final stretch with daylight approaching, as we struggled on through all our aches and pains, there were no sign of any other runners. The organisers checked to see if we were ok to carry on, we said we were not going to fail so close to the finish line but where is the bridge?

We made it to Newcastle but had to get to the finish line somewhere along the Tyne River. It was never ending but eventually the finish came into sight, the relief on our faces must have been a picture! Unfortunately, we hadn't phoned our wives early enough for them to get to the bridge to watch us come across the finish line. We had to wait 20 minutes for them to turn up, but it was brilliant to have made it within the time frame. Just to have made it at all. I couldn't believe we had done 70 miles in 23 hours even if the last 26 miles had been walking and limping. We both said never again, never ever again.

My running partner has said “never again” but I am planning to revisit and maybe I will try again in a few years, I know what the course is like and how much food I need to take on board and how much training will be required!

Gary's Story

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.

Even more active...

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 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.”

Part of family life

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.”

This website should be used for information purposes only for UK patients and carers of patients who are tube feeding. This information provided does not replace the advice and supervision of a doctor, dietitian, or any other member of the healthcare team. It’s important to follow the advice given to you by your healthcare professional.