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Colin’s story

“It is just over six months now since I first discovered the loose tooth that led to me needing cancer surgery at Addenbrooke’s. It all happened so quickly: I went from having toothache to a major operation in just a few weeks. I want to take this chance to share what the experience has meant to me – and to explain why I’m certain that any donation you make today will make a real difference to people who find themselves in a similar situation to me.

The first thing I’ll say is that I can’t speak highly enough of my surgeon Malcolm Cameron and everyone who helped to look after me at Addenbrooke’s. With cancer, you’re talking about life and death, aren’t you? I have absolutely no doubt that the Addenbrooke’s team saved my life. If the bone and tumour hadn’t been removed from my jaw, I probably wouldn’t be writing to you now.

I was told it was a slow-growing cancer, but to be honest I felt like it was galloping inside me. A couple more teeth got loose in a matter of weeks after I was told it was cancer, and you start imagining the worst, don’t you? It’s very unnerving when you hear that you’ve got something in your body that’s determined to kill you, and that’s how I felt. So, to be told that you can get rid of it safely so that it is no longer a threat is an amazing relief. I will always, always be grateful to Malcolm and the team for that. As I said, they saved my life.

From the very beginning I felt very reassured by Malcolm. Like anybody else I was frightened to death of cancer, but Malcolm seemed completely confident he could fix it, and when someone says that and you can see in their body language that they believe it, you believe them too.

That didn’t stop me feeling absolutely terrified on the day of the operation though: it’s the uncertainty and not knowing what you are going to be like afterwards. This was my first operation and it’s very difficult to get your mind around. I told Malcolm I was worried to death and he said, ‘I’m sure you are – this is your first time. I do this sort of thing every week, so just leave it to me and go to sleep’. It was exactly what I needed to hear. His whole manner was brilliant – you always got the sense he was constantly thinking about the patients and putting them first.

In fact the same is true for everyone I met at Addenbrooke’s. People were very caring, and whenever I wanted something they were there. My family were well looked after too. I asked Malcolm to make sure there was someone there to talk to me when I came to after the operation, and that was exactly what happened. Things like that really matter.

I worked as an engineer for years, and the use of these cutting-edge scans in the surgery did appeal to that part of me. Malcolm actually showed me the 3D models that were made overseas. He used them to know exactly where to cut the bone in my mouth and where to cut the bone in my leg so it fitted in my mouth.

Having access to that level of information really is remarkable. It reduces the risks so much. But as an engineer I also know how important it is to have everything you are working on under your control, and that isn’t the case for Malcolm at the moment.

I think having the 3D scans and models made overseas has been extremely difficult for the team. It would be so much better to have that new cone beam scanner in the hospital at Addenbrooke’s, so the cutting guides and jigs could be made more quickly and tweaked on site. The scanner could be used for a lot of other illnesses too, so your donation would help a lot of people.

As for me, I’m continuing to recover now – and the great thing is that I do still have a future. There was a time before the operation when I was getting nervous that we wouldn’t get the cancer out quick enough. I kept thinking it could spread to the rest of my jawbone or elsewhere in my body.

But Malcolm is confident the surgery has worked well. It may even be possible in the future to use the cone beam scanner to help put more teeth back into my jaw. That would be great – you don’t want to look like Steptoe from that old TV show Steptoe & Son, do you?

More than anything, I want to focus on my family now. I’ve got two daughters and grandchildren, and the future is very important to me. I want to see them all blossom.

These things are only possible because Malcolm and his team at Addenbrooke’s were able to save my life, so I hope you will make a donation today. They are a remarkable team, and this scanner would help so many more people to cope and recover when they get the kind of shocking news I was given last summer. “

– Colin Clarke

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Ruth’s story

In October 2011, busy working mum-of-three Ruth Sapsed had emergency neurosurgery for a rupture close to her brain.

“It all happened so fast. From being at the heart of everything – work, family, friends – I suddenly felt so cut off. While the ward was incredibly friendly, emotionally I found being in hospital extremely difficult. It was hard to relax properly, especially with my girls and husband. I really worried when the girls were there and wanted to protect them from all the shocking sights and sounds.

I didn’t know where to go to take my mind off things. The heat, light and bustle of the hospital concourse felt overwhelming, so I spent hours in bed watching TV, thinking about getting home. I needed a quiet space to be – somewhere relaxed and less institutional. Not bright lights, endless noises and disruptions. One day I even walked to the perimeter fence in my pyjamas, gazed at the fields and thought about walking off. The hospital does a truly exceptional job to get bodies like mine working again. But I felt the emotional experience could be improved – to treat and nourish the mind, as well as the body. A garden full of natural colours, living things and distractions, would have been lovely.

In 2015, my symptoms returned and I needed a re-run of the operation. It was a big blow and the anticipation was horrid. I didn’t want a day longer in hospital than I needed. After the operation, I was constantly looking to escape to peaceful spaces. This time, with all the new buildings everywhere, it was harder to find anywhere to go. One day, after searching for a good spot, I found a step outside to perch on with a coffee. I just wanted to feel the air on my face and soak up the early Spring sun. The view was a building site but at least I was outside – which made it easier to focus not on being ill, but on getting well again.”

It’s very clear that emotional wellbeing plays just as important a part as physical wellness on the road to recovery.

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Maggie’s story

Maggie is one of ACT’s top fundraisers, raising over £75,000 since her liver transplant in 2011. Maggie has organised a charity ball every year since her operation; the first one just a few months after she came out of hospital. She was recently a Pride of Britain nominee, reaching the finals for her incredible fundraising efforts. This is her story.

“It was around Christmas time that I started to feel a little unwell – just tired and off my food. But I just thought I’d got a bug, like everybody else. Then, a few days after Christmas, I went to have my regular flu jab – I’m asthmatic so I get it automatically, but I was a bit late that year. As always, they asked if I was feeling okay, so I told them that I’d lost a bit of weight; didn’t have much of an appetite and was sleeping a lot. They did some blood tests to check everything was in order – checking for diabetes, thyroid, liver and kidney function.

Within 24 hours, I was called back to my GP. When I went in, the first thing he said was “How have you not noticed that you’re jaundiced?”. You would think that, working in a hair salon in front of 50 mirrors, I would’ve noticed! Or someone would anyway! But no-one had, not even my family.”

Maggie spent a lot of time going backwards and forwards to the hospital. She was surviving on half a pot of yoghurt a day as eating caused so much pain. After around five weeks, she collapsed and was rushed to Peterborough Hospital. She wouldn’t go back home for six months.

“I spent eight weeks at Peterborough Hospital, but they couldn’t find out exactly what was wrong with me. AT the end of July 2011, the liver consultant then referred me to Addenbrooke’s.

I was able to go home for the weekend a few times, but the last time my husband had to bring me back within hours because I was just throwing up blood.

I was told I needed a liver transplant and went on the emergency transplant list. I was in the last stages of acute liver disease, although they still didn’t know why. I then started to deteriorate really quickly so I went on the national list, which normally guarantees a transplant within 72 hours. But because I was so tiny, they struggled to find one the right size. By this time, I was on the intensive care unit – on life support.

On Wednesday 4th May they told my husband, Ian, to tell the children that I had until the Monday, and then they would have to turn off the life support, because after that I would be inoperable. There was a lot of praying as you can imagine, although I didn’t know anything about it as I was in and out of consciousness – on morphine and breathing apparatus.

A donor liver came in on the Sunday – I do like to leave things until the last minute! The liver was full size, but they just couldn’t wait for a smaller one. They told my husband that they may not be able to close me up properly during surgery; they might need to leave me open. The liver, although the right tissue match, was not the right blood group – I’m O+, the donor was A+.

However, while I had been in hospital, I had developed ascites, caused by liver disease, which is where the toxins in your body build up as the liver isn’t dealing with them properly. Although I kept having my stomach drained, it had stretched so much they were able to fit in the liver and stitch me up. So that was a bonus!”

After her transplant, Maggie had to re-learn many everyday tasks, even walking and talking, as the toxins had affected her brain. She was in a wheelchair or using a walking frame for months and had other issues.

“I caught an infection in my mouth, so my bottom lip is still numb. I also have a lot of problems with my eyes due to infection, so I am in and out of eye hospitals all the time – both here in Peterborough and at Moorfields. I’m still on a lot of medication and, because I am so tiny, struggle to keep it down. My appetite is also very up and down – some days I don’t want to eat anything at all.”

Since Maggie has had her transplant, she and her friend Sheridan Gaunt have raised £64,000 for ACT by holding an annual ball. The first was held just a few months after her transplant.

“Before I got very ill, I told Sheridan that I’d like to do a charity ball – just the one. And then, when I didn’t think I was going to make it, I asked her to do one in my memory. As it turned out, we were able to organise the first one together and, we thought, that was that. But everyone kept asking when we would be holding the next one, so we just carried on! The last one we held was our eighth! We are really lucky, everyone’s been so supportive, and a lot help me every year – they’re great. We couldn’t do it without them. And we always have a great night!”

Maggie is philosophical about her health and experiences.

“Although what happened to me was horrendous for me and my family, I’m glad it has happened – it has made me the person I am today. I am so grateful to be alive and for all the wonderful staff at Addenbrooke’s that looked after me. I do miss party animal Maggie though!”

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Michelle’s story

Michelle has always been a very healthy, active person. Running is her passion and she’s twice competed in the London Marathon. However, after changing to a new, stressful job, she found that while running one of her usual runs, she couldn’t even get to the end of her road.

“Looking back, I wasn’t feeling too brilliant but just put it down to the job. But, as a runner, I know my body really well, so I quickly realised that something was not quite right. I went to my GP who gave me a sort of well-woman’s check-up. He said that he hadn’t seen me for a few years – I must be keeping really healthy.

So, they checked my weight etc. and generally thought I was in really good health. They sent off some bloods and advised me not to run in case it was something serious. When the tests came back they showed excessively high cholesterol. The first thing they thought was that I had heart disease, but the heart specialist said I had the heart of a 21-year-old – nothing wrong there.

It was at that point that they realised it was my liver that wasn’t working properly. After a series of blood tests at Ipswich Hospital, I got a call at work to say my bloods were off the Richter scale and I needed to be in hospital urgently. I half laughed – I was feeling fine, everybody just thought that I had a really good suntan. But I was admitted into Ipswich Hospital and then transferred to Addenbrooke’s.

The team at Addenbrooke’s said that I would eventually need a transplant, but they didn’t really know what was wrong with me. So, I had extensive tests for absolutely everything. They told me I’d had glandular fever a year before – I just thought I’d had the flu – and that can trigger liver issues. Because there was something showing up in my bloods they tested me for leukaemia. And I’m sitting here now thinking ‘at least it wasn’t leukaemia’ and then ‘but what about the liver transplant!’ Eventually, although they are still not 100% sure, they thought it must be PBC (Primary Biliary Cholangitis), where your body and immune system basically turns on itself.

I was in and out of hospital a lot at that time. While they were preparing me for the transplant I was again tested for absolutely everything – I really had the most amazing treatment. Unfortunately, they found little cysts in my ovaries. Although non-malignant, I had to have them removed. My gynaecologist told me afterwards my insides were bright yellow. He even took a photo and joked that I might find myself in a medical journal.

There were still issues before my transplant – my liver was basically shutting down my body. I was malnourished because I didn’t want to eat, and my weight plummeted to under five stone. They told me I had to eat, or I wouldn’t be able to get the transplant. I begged them to let me out of hospital, I said I could be looked after better at home. I was at home for four weeks, but I couldn’t even get up the stairs, my husband had to carry me to bed, so it was pretty traumatic.

Then I got a call to say the liver had been matched. We rushed straight to Addenbrooke’s – my bag was all packed, like having a baby! Right before the surgery, my surgeon, Mr Gibbs, asked what I really, really wanted to achieve after the transplant. I said I’d just love to run again but I can’t see that happening. He said, yeah, we can do that.”

Michelle’s operation was a total success. Surgeons were even able to remove the lobe of the donor liver and transplant it into a newborn baby – Michelle got the rest! Her recovery was swift; she left hospital two weeks later and was in full training within four months. Mr Gibbs had kept his promise.

In August 2015, exactly a year after surgery, Michelle ran for Addenbrooke’s in the Hospital Transplant Games, winning gold in the 100m and 200m races. The following year she added 400m to her repertoire and won three golds and was selected for the World Transplant Games. She competed in Malaga in 2017 and came home with a bronze, two silvers and a gold. She also now sits on the committee for Addenbrooke’s Transplant Sports, which helps athletes get to the games. Michelle cannot praise the wonderful transplant team at Addenbrooke’s enough and continues to be an ambassador for the hospital and the charity, ACT, that supports them.

“I didn’t see having a liver transplant as a death sentence, I saw it as a kick up the backside. It makes you think, wow, what wonderful lives we have! I can’t show it through music like other people do, or write wonderful articles, but maybe through sport I can show people that a woman in her late 50s with a transplant can still compete at a high level.”

“One thing I’ve realised since I’ve been competing in the transplant games is the amount of support I get from Addenbrooke’s compared with other hospitals. I have a transplant coordinator, Tine, who is always there when I need her, at the end of the phone or an email, as are the rest of the team – I have a wonderful support network. But this really isn’t about me competing and showing my medals off, it’s about raising awareness. I want people to know what having a transplant has meant to me. And also, to encourage people to sign up to the donor register. Because there are people dying out there, just waiting for a donor organ.”

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Paul’s story

In 1990, Paul was diagnosed with liver disease. After initially responding well to treatment at the Queen’s Medical Centre in Nottingham, it was suggested to Paul that he should be on the liver transplant list and so his details were passed on to the transplant team at Addenbrooke’s hospital for further testing.

The team at Addenbrooke’s confirmed that a transplant was required and Paul was put on the liver transplant list in August 2017. In January 2018, he received a call to say that a liver was ready for him. He and his wife urgently travelled down to Cambridge, only to discover that, unfortunately, the liver was not suitable which was extremely stressful for him and his family.

After the stressful false alarm, Paul was called again in August 2018 by the transplant team who had another liver for him. However, this time, the liver perfusion machine was in operation. As a result, the suitability of the liver was tested and confirmed for use.

“I went down to Addenbrooke’s and the team carried out numerous tests within hours of me arriving at the hospital,’ said Paul. “Apparently the donor liver was on the perfusion machine and was being checked. Then the surgeon came through, and he said, “It’s ok, we’re ready”’.

After 11 hours in theatre, Paul’s liver transplant surgery was a success and he is now getting back to his much-loved hobbies of cycling and golfing and is very grateful for the care he received at Addenbrooke’s.

He said: “As far as Addenbrooke’s is concerned, I can’t praise them enough really, they were absolutely superb. The surgeons, the consultants, the nurses and the whole team were absolutely marvellous.”

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