January 2008, 24 years old and celebrating the birth of our daughter, this is probably the earliest memory I have of having pain in my coccyx.
At the time I was experiencing discomfort in my lower back sleeping at night so decided to treat myself to a really good mattress to see if this would help with the pain. The mattress arrived and although really comfy did not seem to help. I decided to see my GP to see if there was anything wrong. First question I was asked was “have you had a fall?” I had a think and yes I did fall backwards pulling a tree down in the garden earlier in the year but this did not cause me excruciating pain like you hear described from fracturing your coccyx. “Sounds like you have damaged your coccyx” was the response.
It’s called coccydynia, unfortunately there is not much we can do to help, take ibuprofen and paracetamol when you need to relieve the pain
I was advised to come back if it persisted over the coming months. As the months passed by the pain continued and I was referred to see a specialist in musculoskeletal medicine. When I spoke to the specialist I was asked the same question “have you had a fall?” I think it’s fair to say that most people will fall backwards onto their coccyx at some point in time so again I said yes, thinking back to the time in my garden. I asked about having an x-ray but the response was that there was no point as there would be no benefit from it. I’m pretty sure that the specialist had a feel around my coccyx but did not do an internal examination. Sometimes I think if only he did he would have felt my chordoma and maybe things would be different now, but he didn’t so I tell myself that it would probably have been too small at that point anyway.
I was officially diagnosed with coccydynia and given a steroid injection to help with the pain. This helped and after four weeks I had another and was told that lots of people have bad backs and unfortunately it is just something that I would have to put up with for the rest of my life…
I bought myself a wedge to sit on at work and when travelling by car and got on with the rest of my life as advised. I was able to do this for just over two years. In November 2010 my wife to be, Michelle, and I noticed that there was now a noticeable lump where my coccx is, I remember asking the question jokingly “what if it is cancer?” "No it can’t be" we said, “it’s probably just inflammation, nothing to worry about”. Still, I went back to my GP who could also feel the lump and so referred me back to a specialist. As before, the same question was asked, no internal examination was done and I was referred to pain management. I then spent 2011 on different pain killers, having acupuncture and trying a tens machine. None of these helped and by September I was starting to struggle with bowel movements, not all the time but something had changed. In the November I again saw my GP who requested a second opinion and possibly an MRI. I was told this could take a while so decided to see another specialist privately through my private work insurance. Again the same questions were asked and I was recommended for a coccyx manipulation to bring the coccyx back in line as it was clearly bent to one side.
In the meantime, as we had been engaged for six years, Michelle and I thought it would be a good time to actually get married. We had picked our venue for the following year, ordered our invitations and was looking forward to our big day, what could go wrong!?
January 2012, after four years of pain I was about to have my coccyx manipulated under general anaesthetic, my wife to be was by my side as always and fingers crossed this would help. Off to sleep I went and shortly afterward awake again. I woke to the news that they could feel a lump and not my coccyx and that an urgent MRI had been requested for 7pm that same evening. I remember the pain lying down in the MRI machine, it felt like forever. A few days later I saw the consultant again, he told me that the mass was 16cm at its largest point, it could be one of three things and that I would have a biopsy to determine what it was. Generally I consider myself to be a lucky person and am positive in most circumstances, whilst worried that it could be cancer I was hopeful that it would turn out to be benign.
On the 6th February 2012 our worst fears were confirmed. The biopsy result came back and it was official I had cancer, I was now officially a one in a million person, I had chordoma.
Stepping into the unknown we did the one thing everyone says not to do, ask Dr Google what is chordoma? Google is great for a lot of things but providing up to date information on chordomas is not one of them. Advances are being made every day, more specialists are learning how to tackle chordomas and the future is looking brighter.
Back to 2012, I was then referred to a specialist surgeon at Birmingham Royal Orthopaedic Hospital. Michelle by my side he explained that although there is little known about chordomas, they are slow growing and don’t often metastasise. He told me that he could remove the mass and was positive that I would have no recurrences. If a chordoma re-occurs it usually comes back in its place of origin. To help make sure of this he would also refer me for a special kind of targeted radiotherapy called proton therapy which would make sure that the area was free from anything that is left behind. He was also confident that we could continue with our wedding plans which gave us some comfort in other difficult times.
By the end of March I found myself in Birmingham ready for surgery, “you should be in for about two weeks” they said, I was in for six. Surgery went well but due to its size and location the wound reopened and a wound vacuum was needed. Being in hospital for that amount of time can be lonely and frustrating, at that point in time I had not discovered Facebook or Netflix, highlights of my day would include Deal or no deal and waiting for a hot chocolate at bed time. Michelle was able to visit with the children over the weekend and friends and family came when they could. When I returned home there was only three weeks until our wedding, Michelle was working hard to create our flower decorations and I still had an open wound. When the big day came around the sun was out, the church was full and Michelle was on time. We filled our bellies with delicious food, I failed at my speech, played on the bouncy castle and even made time for our first dance.
After all the heartache and stress of the first six months of the year we were given one of the most beautiful and perfect days of our lives.
Other good news was that my case had been approved by the proton panel and I was off to Jacksonville in Florida to make sure that none of the beast was left to cause me more pain. I remember also feeling guilty at the time as there was also a little girl in my town that had not been approved for her brain tumour and her family were trying to raise money, she passed away in 2015.
As I was still having trouble with my wound healing, it took another three months before I could go. Michelle couldn’t have the time off work so I spent a long ten weeks without her and my children. Skype was now our best form of communication, the first three weeks were tough mentally but I eventually made friends and explored my surroundings. I was told the main side effect to worry about was burning and this didn’t really kick in until about week eight. I was given some cream to rub in and told to sit on a bag of frozen peas for relief. As I was coming to the end of my treatment the skin began to peel and I was also given some cooling gel patches. Before I knew it I was booked to return home, the team even let me return early so that I could be back in time for my daughter’s birthday. I kept this a secret from Michelle and remember receiving the biggest cuddle from her and my children when I surprised them, it was good to be back.
Shortly after my return we travelled back to Birmingham for my first follow up. Positive and hopeful as ever, I had my MRI and we waited for the results. “I’m really sorry”, three little words I’m going to hear a lot over the next six years, the scan showed spots in my hips and pelvis. Only small, nothing to worry about too much, I took on board the positivity of my surgeon that they could be dealt with. We were advised to keep an eye on them and if they grew they would be dealt with. The following year, now into 2014, I had them burnt out using Radiofrequency Ablation. This is pretty much a technique that is like sticking a hot needle into the tumour to burn it out. I remember waking up in extreme pain from this one, nothing a little morphine couldn’t handle though. I also had another follow up scan. It was now in my spine and on a rib. I started to become a little worried, I could feel a lump on my sternum too which didn’t show on the scan. Although it is said that standard radiotherapy doesn’t work for chordomas I thought I’d give it a try and so they gave them a blast.
The lumps on my sternum and rib grew pretty fast and in 2015 I met a surgeon in Sheffield that could help me. I was in and out of Sheffield Northern General within a week, the food was awful so that was some encouragement to get me out. The next scan was also followed by those three words, I had some more radiotherapy to my spine just before Christmas and in January 2016 I started on a drug called Imatinib. One of the disadvantages of being one in a million is that little is known about the disease and so there aren’t many options, in fact there are no options following surgery or radiotherapy. I was lucky to find a private group on Facebook called Chordoma Survivors where we can share our stories, vent our frustration and give each other advice. From this I have been able to keep up to date with the latest drug trials and pass this information onto my consultant at Weston Park Hospital. After six months it was obvious that Imatinib was not working for me, I say for me because it did work for another chordoma survivor that tried it alongside a low dose of Etoposide (chemotherapy).
Another drug being mentioned was Afatinib, there was news that a trial was upcoming but no dates had been mentioned. As luck would have it my consultant met a representative of the drug company behind Afatinib and they agreed to let me try it on a compassionate basis. By this point in time scans showed that chordoma was now in pretty much all of my vertebrae. I began the drug in October 2016 and for the first time we began to hear the word “stable”. Although some relief could be taken we were still wary as we knew that stable meant that the disease could still be growing within margins. As chordomas are slow growing it can often be difficult to know if a drug is working or if the disease is growing at its own rate.
My trial of Afatinib lasted eighteen months, the stable scans could only be classed as stable for so long before we had to agree that it was no longer working. Afatinib is normally used for lung cancers and usually gives the patient the same amount of extended time so although it was a shock when it came to an end it wasn’t too much of a surprise.
Deep down I must have known what was going to happen as the year before I had decided to cash in a pension and have 2018 as my retirement year. I started by visiting my sister and brother in law in Adelaide for two weeks, she moved over in 2011 and I had not been over. It was made that bit more special as my daughter Grace joined me whilst Michelle and Jack, my son, stayed at home.
It was nice to spend quality time with her on a Daddy & Daughter adventure. She loved her time over there and can’t wait to go back. Next up was a long weekend away with friends drinking more than enough beer in Prague, another good escape away from the reality of what is happening to my body. This was followed by a busy Family weekend in London, taking in all the sights, watching the Matilda musical, visiting Madame Tussauds, London Dungeons (until Jack got scarred), the London Zoo and a last minute dash to The Eye before catching the train home. We literally only just made it with a couple of minutes to spare, another memory to last a lifetime!
Although having cancer can take up a lot of your time and energy you can’t let it run your life.
Our next booking was a Mediterranean cruise, we saw beautiful architecture in Barcelona, Villefranche-sur-Mer, Pisa, Florence, Rome, Salerno, Venice and Kotor. All fantastic memories that I hope Grace and Jack remember.
By this point I was starting to have pain in my left leg, my scans were showing that one of my spinal lumps had begun to push into the cord and I arranged to be booked back into Birmingham Royal Orthopaedic to have decompression surgery. My previous surgeon had retired but I was more than happy with his replacement. The panel discussed me and I was given four options to choose from. These ranged from removing two vertebrae to removing only what was necessary to relieve the cord.
I chose one in-between the two and so had parts of vertebrae removed and rods & screws used to strengthen the spine.
The Surgery went well although I did have an issue with headaches and sickness which was put down to spinal fluid moving more freely. I was out in less than two weeks and continued my recovery at home watching England do well in the World Cup.
For our final adventure of the year we had booked a trip to Disney World in Florida during the Halloween period. We had discussed this with my surgeon and he was confident that I would be well enough to go. As the weeks passed by the headache started to return until one day I started being sick and my balance was off. I called the team at Weston Park who called an ambulance, they arrived and checked me over, I can’t remember why but they didn’t take me to hospital. Later in the day things were not improving and so Michelle took me to Weston Park as I laid in the back of the car with my eyes closed unable to sit up without feeling sick. Once admitted I was given an anti-sickness injection and given more painkillers. An MRI was performed the next day and my medication was reviewed.
When the results were in we heard “I’m sorry” again, the chordoma was now in my head. A 2 x 3 cm lump somewhere behind my eye and in from my ear.
I stayed in hospital for a few days, made some good friends, had some tasty food and was prescribed a list of medications. The team in Sheffield reviewed my case and recommended stereotactic radiosurgery. This is another type of targeted radiotherapy also known as Gamma Knife. A cage is fitted to your head and the dose is given in one day at multiple angles over 2-3 hours, this can be quite tedious for most people staying still for so long, I fell asleep after half an hour and woke back up with fifteen minutes left! Mentally this was a tough one to accept, it was pushing on a trigeminial nerve and the consultant told me that it is also called suicide disease due to the intense pain that it can cause. Gradually I came to terms with it and told myself that the radiosurgery would work as others on the Chordoma Survivors group had also this type of radiotherapy and are still with us.
Our Disney vacation was four weeks away and I was advised to get travel insurance to cover my condition. I was given a list of insurance companies that specialise in people with cancer, phone call after phone call I was unable to get cover. Finally one company said yes, £15,000, I decided to keep looking, the clock was ticking and I eventually I found cover with All Clear for £1,000, out came the credit card and peace of mind was gained. Before having radiosurgery one of the nurses told me how one patient was left with a £32,000 bill when they needed a private flight home when they took ill so that was a risk I didn’t want to take.
I didn’t want chordoma to beat me and to take away a chance to make more memories with my family.
I was still having issues with leg pain but my headaches were gone, we flew out as planned and had an amazing time riding the new Slinky Dash ride, collecting way too many chocolates at Mickeys Not So Scary Halloween Party and riding the flumes in Volcano Bay.
Following the end of the Afatinib drug I was told that I had exhausted all known drugs that I could try through Weston Park Hospital. I could not start on any other until I had fully recovered from surgery and my only option now was phase one trials at either The Christie in Manchester or Royal Marsden in London. I attended both and was told that it can take a while before a suitable match is made. Due to the rarity of chordoma there were no specific trials I could start nor were there any immunotherapy trials which were showing any promise. I waited patiently and in January this year I received a phone call from The Christie to say that they had a drug which targeted a protein that had been identified in my samples. With nothing to lose I signed up, I would travel to The Christie twice a week for treatment, what else could go wrong. The trial started well but I began to have more pain in my spine, the pain management team increased my medication but as I arrived during a rest week to have bloods taken it was obvious that the pain had become too much. I was kept in overnight and given an MRI, two other spinal lumps were now pressing onto the cord. It was decided that I could have radiotherapy to relieve the pain. After this was given I was able to restart the second cycle of the trial which brings us up to the present.
I am booked in for a CT scan in April 2019 to assess how things are going, again if they are within tolerance I will stay on the trial. I have been told that further surgery is no longer an option so trials are my only way forward. Having knowingly had chordoma for seven years I am extremely grateful for the time I have had, some of the figures we were told at the start mentioned five year survival rates so I have passed that point at least. I have seen some success stories on the Chordoma Survivors group and remain positive that we can beat this.
There have also been other members who have not made it this far, I remain hopeful that something can be found for me in time.
Early diagnosis is key to beating this thing but I can’t dwell too much on that as I want to be able to enjoy the time in front of me. I enjoy spending time with my family whether it be spending a day chilling in front of the television or getting out to the seaside, time together is what matters.
I intend to make as many memories as possible in the time I have and I’m determined to make it last as long as I can.
It is sad to see the amount that large UK cancer charities invest in beating bone cancer specifically, just 0.04% of their research spend.
I have often seen adverts for them featuring young bone cancer patients to generate income but the reality is that the majority of your donations to them would go into beating the more common cancers. That is why it is important to support the Bone Cancer Research Trust to ensure that your money goes into beating bone cancer. I truly believe that we are now at a point in time where the research being carried out is going to swing in our favour and that through awareness work being carried out by the Bone Cancer Research Trust, GP’s are going to help diagnose patients sooner.