Derek's Story

Derek’s symptoms first appeared directly after he had undergone angioplasty – a procedure which eases heart problems by widening narrowed or blocked arteries.

“First of all I thought it was just angina, which they said I would probably have a little bit of. My ribs became tender, and then more and more painful. Sneezing, coughing or even breathing too heavily was extremely painful.”

Derek was diagnosed with Tietze’s Disease – an inflammatory disorder characterised by chest pain and swollen rib cartilage. His symptoms continued for three years before he discovered a hard lump on his chest. His doctor immediately referred him to a specialist at Frimley Park Hospital, where blood tests confirmed that Derek had multiple myeloma – bone marrow cancer. A CAT scan revealed holes in the bones in his ribs, sternum and spine, and he was immediately put onto an intense course of chemotherapy, which was followed four months later by a stem cell replacement, performed at the University College Hospital in London.

The operation was successful, but the chemotherapy which he underwent prior to the stem cell replacement left him in a lot of pain.

“One of the drugs they use in chemotherapy destroys nerves, which then re-grow, but this causes a lot of pain,” he explains. “You can still move your body, but when you touch it, it feels numb.” Derek experienced this numb feeling from the waist down and, as his nerves began to grow back, the pain started. “It feels like being beaten on the soles of your feet and then asked to walk over pebbles. That feeling’s always there, that never stops. I also got the feeling you get when you’ve just woken up and you’ve laid on your arm. When that pain comes, it stays for ages. Then there’s burning in your toes, along with prickling sensations and electric shocks which go down your legs and into your feet. These pains don’t go away, they never allow you to rest.”

The pain kept Derek awake at night, and he struggled to get just two hours’ sleep. Sleeping tablets didn’t help and nor did painkillers. “It’s a ridiculous amount of different sensations at once,” he remembers, “and that’s why it’s hard to cope with. It’s not just one thing you can deal with, it’s always changing. And it’s a pain nobody can see. Half the time you think you’re going crazy because you think people aren’t going to believe you.”

Derek found walking very painful, and standing still even worse. The only comfortable position for him was to sit with his legs raised. “I didn’t walk,” he says. “I haven’t done much walking for a year now, and I love walking.”

Although Derek was referred to Phyllis Tuckwell directly after his chemotherapy, he didn’t have time to begin treatment at the Hospice before his stem cell replacement. After the operation, however, he was visited by a Phyllis Tuckwell doctor, Paul van den Bosch.

“He did a consultation in my home,” Derek enthuses, “which was amazing, as I had such trouble walking. That was my first experience of Phyllis Tuckwell, and it was a very good experience, but I didn’t understand why they were coming from there. I thought ‘Phyllis Tuckwell – it’s a hospice! Why is a hospice contacting me?’ But it certainly helped. Dr van den Bosch was there at the end of the phone for support, and he would call me every week to see how I was doing.”

Dr van den Bosch recommended a different drug, which helped a little with Derek’s pain and enabled him to go back to work. However, the pain was still too great for him to work a full day, and after a few hours he would have to go home to rest until it subsided. Desperate, he asked if anything more could be done. Dr van den Bosch reassured Derek that he would sort something out and, shortly afterwards, Derek was contacted by Phyllis Tuckwell and offered both hypnotherapy and acupuncture.

Although both were helpful, it was the acupuncture, provided by Phyllis Tuckwell physiotherapist Sue O’Brien, which made the biggest difference. “I didn’t really think it would work,” Derek confesses. “I thought ‘you can’t just stick a needle in there and it will make any difference’. But it’s made a measurable difference.” Since starting the acupuncture, Derek has been able to dramatically reduce the painkilling drugs he takes and can now work a full day, when six weeks ago he could only manage four hours at most.

“Before it was a painful experience just to go across the road to the shops, but now I can walk for a good half an hour before it becomes too uncomfortable,” he smiles. “Some days I get very tired, but that’s normal. Some days my feet and legs become painful at the end of the day, but I do make an entire day and I can tolerate that discomfort, and then I can go and relax in the evening. I couldn’t do that before. Before, it was all night long. I couldn’t go to bed, I couldn’t sleep.”

“I didn’t realise this was available at Phyllis Tuckwell,” he says. “It’s quite frightening when the doctors say you’re at the maximum of painkillers you can have, and that’s not really doing it, and there’s nothing more they can offer. And then for someone to come up and say ‘let’s try this’, and it helps, it’s phenomenal, absolutely phenomenal. It’s become a lifesaver for me because it’s allowed me to have a normal life again.”

“It wasn’t easy to hide the pain all day from the people I work with,” he continues, “or from my wife, who worries a great deal. But she’s got her life back too now. It’s not just my life that this has affected; it’s affected the lives of everyone who cares about me.”

Derek has now come to the end of his course of acupuncture, and has made such good progress that he is happy to see if things continue to improve without any more sessions. But he knows that he can always go back for more if he needs to.

“It’s a case of giving it a while and seeing,” he says. “If it doesn’t improve or if the pain comes back, I know I have that safety net of contacting Sue directly and asking if I can have another session. It’s extremely reassuring, a huge safety net. I can’t explain how good it is. It’s frightening when all you experience is pain. To know that there’s someone there who can help, it’s a lifesaver.”

“Life is great. I’m going to go back to swimming soon, and walking. I play guitar and I’m going to go back to that. I did have the same problems in my fingers and hands, it’s still there a little, so I haven’t been able to participate in any of my hobbies for the last fifteen, sixteen months. My home had become a prison. Just being able to get out – not to look through the window and watch everybody else having a life, and sitting there thinking when is this pain going to ease, and it doesn’t, is amazing. What Sue has done for me – she’s given me my life back. I got to the point where I thought maybe the cancer should have taken me away, I just couldn’t see a future. I could quite happily have had my feet cut off, it was that painful. But these six weeks have made a massive difference, so if that’s six weeks, what’s the next six weeks going to be like? I’m going to be back doing all those things that I love. I want adventures and excitement. I’ve always had a very young mentality and that’s carried me through this unfortunate phase of my life. But you know the good thing – I’m still here. Every day is about living, it’s not about anything else. You can’t waste your time saying ‘if’ and ‘but’. You just do, and what will be will be.”

When asked what he would say to someone who had just been referred to Phyllis Tuckwell, Derek replies “there’s nothing for them to fear. Only good things come from here, even in the worst scenario. It’s incredible what people can do. I would not hesitate to come here, no matter what the situation was.”