Your stories

It started sometime in 2000 when I felt a pain at the bottom of my back when I sat down. After about four weeks the pain was gradually becoming worse so I decided to see my doctor. After an examination, he didn’t know what was causing the pain and he prescribed Ibuprofen tablets to ease the pain.

A month later with the pain not getting any better, I decided to look at alternative methods to ease the pain and started by having a series of sessions with a physiotherapist. The physiotherapist advised me that it was a ball of matter at the bottom of my spine and after a few sessions suggested that I made an appointment with his friend who was into Reiki. After a few sessions with the Reiki therapist, she agreed with the physiotherapist that it was a ball of bad matter at the bottom of my spine.

After approximately three months of sessions of physiotherapy and Reiki and my back showing no signs of improvement, I decided to stop the treatment. After months of doing nothing to find a solution for my back pain, I decided to seek the help of a chiropractor. After a few months of sessions with the chiropractor and my back showing no signs of improvement and the pain actually getting worse I decided to end the sessions. By now I was feeling excruciating pain in my lower back when driving and sitting down so decided to try acupuncture combined with Chinese herbal remedies. Again after a few months of acupuncture and no sign of improvement, I decided to end the sessions.

After the acupuncture treatment, I noticed a slight swelling in the area where the pain was coming from but just thought that this was due to the suckers being used during the acupuncture treatment. By now five years had passed since my first appointment with my doctor and it was my daughter Gemma who suggested that I go back to see my doctor and demand further investigation into what could possibly be causing me so much pain.

August 2005 – Doctor makes an appointment for me to have an MRI scan at Warrington Hospital. Two weeks after the MRI scan Gill and I returned to the hospital for my results. We sat in the examination room when the specialist and two students entered the room. The specialist put a negative up to the light box and immediately takes it back down and the three of them leave the room. Gill and I had noticed a large circle on the negative to the base of my spine before it was taken away and we looked at each other in horror. The specialist and students returned to the room five minutes later and told us that I had a ball of matter the size of an orange attached to my coccyx and that he was referring me to an orthopedic hospital in Birmingham for further tests.

One week later we received a letter from Royal Orthopaedic Hospital in Birmingham asking me to attend the hospital whilst a biopsy was carried out. Following the biopsy was the longest two weeks of our lives as we waited for the results. Two weeks later we received a letter asking me to attend the Oncology Department for further scans. At the time Gill and I did not know what oncology meant, we were both in shock when we discovered that it meant cancer.

24th October 2005 – Attended the Royal Orthopaedic Hospital for CT, MRI, and CAT bone scans.

26th October 2005 - Following the scans, we met Mr. Grimer (who is now Professor Grimer) who was to become my surgeon. Mr. Grimer explained that I had a rare form of cancer called chordoma and the only way to treat it was to have it surgically removed. As the tumor was very close to my bowel I would need to have a colostomy bag that may be reversed at some time in the near future if all went well. He told us that it was a major operation and that it may take about 10 hours to perform, also I would have a very large wound running up my back. I would be in hospital for about three weeks and would need to learn to walk again. Also, he advised that this form of cancer had a very high recurrence rate.

4th January 2006 – Went into theatre mid-morning for my operation. Woke up from surgery mid-afternoon in the ICU and shortly afterward my wife Gill and then my two daughters Gemma and Gina were allowed in to see me. This was a very emotional time for us all. Later that day Mr. Grimer came to see me to see how I was feeling and told me that all went well with the operation. The next week was spent in bed until I was well enough to learn to walk again. Back on my feet, my next goal was to walk up a flight of stairs so that I could be allowed home. Twelve days after arriving in the hospital I was allowed home.

During my first month at home after my surgery I had my wound dressing changed and re-packed every day at home. I was told that my wound was about 2” deep and required lots of packing each day. In the meantime I was getting used to my colostomy bag and started to go out for short periods at first then built up the time on my feet in stages. Finally, after about six weeks of coming home, I started to ride my bike again and gradually started to spend time in the office again.

All along since being diagnosed I was determined to stay positive and not to let it get me down, and in March 2006 I was examined by a specialist at Selly Oak Hospital in Birmingham and had my colostomy reversed. During the procedure to reverse my stoma, I got an infection in my bowel and I was not allowed home until the problem cleared up, which took ten days.

April 2008 - Following an MRI scan it was discovered that my tumor had recurred. It was the size of my thumbnail and it was decided by my medical team that as it was so small my surgeon would try to remove it whilst in a CAT scan. When I woke up from the anesthetic I was told that the operation was unsuccessful and that they would try again in a month’s time when the tumor had grown a bit more.

May 2008 – Had the second tumor removed successfully.

June 2011 – Following an MRI scan it was discovered that the tumor had once again recurred. Once again the tumor was very small but Mr. Grimer decided to operate. Two weeks later I received a letter from Mr. Grimer saying that he was pleased with the operation and that he had removed a lump around the area where he thought the tumor was. Following my three month MRI scan after my operation, it was discovered that the tumor was still present and had in fact been missed due to its size. Mr. Grimer decided to let the tumor grow sufficiently so that he was confident of locating it during surgery.

July 2012 – Had third tumor removed successfully. My medical team decided that it was highly likely that the tumors may keep recurring and it was decided that I was a good candidate to be considered for Proton Beam Therapy and that we would be applying for funding from the NHS as the treatment was not available in the UK and needed to be carried out in Florida. It was an anxious wait to see if the treatment had been approved by the NHS.

November 2012 – Received the fantastic news that our application for funding had been approved and that in January I was being sent to Florida for Proton Beam Therapy.

3rd January 2013 – Boarded a flight to Florida to undertake Proton Beam Therapy.

January to April 2013 – Spent three months in Florida to undertake Proton Beam Therapy. My wife and grandson came out to spend some time with me for three weeks as this was the maximum that Liam’s school would allow him to have time off school. We had a fantastic three weeks but it was a very sad time for me once they returned to the UK and I was on my own once more. Glad to say that Proton Beam Therapy is available now in Manchester and London as it’s a fantastic treatment with few side effects, I believe that one day it will be the cure for cancer.

October 2013 to October 2022 – Scans all clear and no more scans required. During my consultation with Mr. Grimer following the 2013 scan I told him that I had read some bad things about chordomas and that it was an incurable form of cancer. His reply to this statement made me feel fantastic, he said “Gary if there was ever any evidence that chordomas can be cured you are the living proof.”

Following this scan, Mr. Grimer wrote to my doctor and stated the following, “It was a pleasure seeing Gary today more than 10 years after I first met him with a chordoma of the sacrum. He remains completely symptom-free and has made a very good recovery following the proton therapy he had to the sacrum back in 2013. He has no bladder or bowel problems and he is otherwise symptom-free.” The letter concluded with the following sentence, “There is a very good chance that he has now been cured."

My inner thoughts during my journey

Throughout this journey, I have always remained absolutely positive that I will beat this cancer. I am eternally grateful to my wife Gill who has shared this entire journey with me and has always been with me during my treatments, consultations, and scans and has been a great support for me. Whenever I have had to stay in hospital in Birmingham she has always stayed at either the hospital or local hotel so that she can be by my side as much as possible. I sometimes wonder if she actually realizes how much I appreciate her love and support and I can’t thank her enough. I am also grateful for the love and support from my two daughters Gemma and Gina, and grandchildren Liam, Leah, Lexie, and Lacey.

At times when I have read bad stuff on Google I have contemplated death and have always shared my thoughts with Gill who has always made me feel better immediately with her love and encouragement. I now look at myself as a cancer survivor and would like to share this story with other people diagnosed with chordoma and show them that I am living proof that it can be defeated and that people should remain positive at all times throughout the journey. Here’s to the future!

It all started at Specsavers.

My journey began at the beginning of 2020, just before the pandemic took hold of the world. I had just turned 40 and moved to London from New York the previous year for work, and I was looking forward to settling into life in London.

Then one morning I started having some strange intermittent double vision, like I was seeing the world split in two. I thought it might have been too much time spent on computer screens, or too much champagne over New Year’s. I had never had a major illness before or even been admitted to a hospital. I didn’t think anything would affect me.

After a week of the off/on double vision I was luckily urged by some colleagues to get it checked out. I left work early to pop into a Specsavers down the road, thinking I’d get some glasses and still make it to dinner with some out of town friends. I never made it to that dinner.

The lovely optician at Specsavers couldn’t find anything wrong with my vision, so she urged me to go to A&E at the Moorfields Eye Hospital for further investigation.

They couldn’t find anything either so thankfully the registrar suggested I get a CT scan. They couldn’t do it there since it was Friday night and not urgent enough, so he sent me to my local hospital’s A&E at The Royal London.

Fourteen hours of waiting between hospitals, 2 CT scans and 6 viles of blood later they released me at 6am without finding anything.

That same afternoon I got a call that after further review they wanted me to come back. There was a lesion behind my sinus, at the base of my skull, pushing against my pituitary gland. They didn’t know what it was, so an MRI was needed.

You can imagine the shock and confusion we felt. Trying to deal with the symptoms, a whole new healthcare system, and all the inevitable questions that popped up. Who are the experts? Do we need to go private? Do we go abroad for second opinions? How quickly will it grow? We waited anxiously for any phone call or appointment letter - not knowing when the next one come was difficult to handle. We began to realise that we couldn’t control much either - the timeline, the prognosis, our future.

A couple of weeks later the MRI showed that I had a 23mm tumour in the base of my skull, near my cranial nerve 6, which was probably pinched and causing the double vision. I was relieved to know there was something to explain my double vision, but words can’t describe the shock and disbelief that followed.

They threw out strange words – definitely not the pituitary adenoma that I had lulled myself to believe – but I don’t think they even mentioned the word Cancer. It was something called a Chordoma or possibly a Chondrosarcoma.

Both are rare but I didn’t know how rare until a quick Google search for Chordoma revealed it’s a one in a million incidence. Luckily, for suspected sarcomas we have a pathway in the UK through the NHS, which reviews cases by multi-disciplinary teams and pools the expertise for these rare diseases. That helped give me the confidence I was in the right hands. I was referred to the London Sarcoma Service and then transferred to Prof. David Choi at the National Hospital for Neurology and Neurosurgery/UCLH in London, who’s a leading expert in Chordomas.

The plan was to resect as much as possible through a less invasive endoscopic transnasal approach through the nose and sinus and into the base of the skull.

March 4th, 2020 - Surgery #1. With the assistance of ENT surgeon Professor Peter Andrews, the 4-hr surgery goes well, although any surgery brings about new challenges particularly with the sinus. It’s confirmed that I have a conventional or classic Chordoma - the most common - and my double vision thankfully goes away. We were relieved.

June 2020 – I recover well and I feel like I’ve gotten over the biggest hurdle. But then we get a call from the surgical team. The surgery didn’t remove enough margin, there wasn’t space around some vital visual structures so I couldn’t get radiation without seriously risking blindness. They had to go back in. We were blindsided. We didn’t quite realise how much of a marathon it would be. And this time I would do it alone due to Covid restrictions. Surgery #2.

Surgery #2 is a redo - exactly the same as the first except the risk for mortality and other complications strangely goes up. The only positive about a redo is that it’s familiar. Fortunately the surgery goes well and again we are optimistic about the next steps. The summer winds down and in August we head out on a holiday abroad to celebrate, in the very small window when travel was allowed. Then I get a call from Prof Choi, my neurosurgeon, asking to speak that same day. Your heart drops when you get that kind of call.

There still isn’t enough margin and I wouldn’t be referred for PBT, he said. They would need to go in again, this time with a different approach. A craniotomy. The stuff of science fiction.

We were devastated. I had the option of going down a different radiation route, but that would have probably increased my chances of recurrence. It would be like giving up. So over some grilled sardines on the beach, we decided on getting my head cut open. Surgery #3.

Despite all my fears of getting my head cut open the craniotomy goes well, aside from the seizures I had from the surgery. We eagerly awaited the next MRI results after the swelling subsided.

October, 2020 – I finally get the call I had been waiting for. The team was able to get enough margin this time to refer me to the PBT panel. I find out I’m accepted into the PBT program at The Christie in Manchester, the only facility we had in the UK at the time. We jumped for joy. I didn’t realise you could get so excited for radiation, but after 3 surgeries it felt like we were finally going forward again.

We uprooted ourselves to Manchester during yet another lockdown. I’m fitted with a mask and the machine cycles around me. I have to go in for 41 treatments, 5 times a week, about an hour a day, for a total of 73 Gy. For comparison, average breast cancer is treated with 45-50 Gy. A lot of radiation in a tiny space. And because of that there’s really only one shot to radiate, so we better get this right.

I finish my treatments in February 2021, and finally it feels like we’ve gotten over this year-long hurdle. For me, recovering from radiation was like the opposite of surgery. There’s not much pain at first but the effects build up and affect me even to this day.

I get my first “stable” scan in October 2021, and I’m happy to say that it has stayed that way. I’m on 6-month MRI scans for 5 years, and yearly after that. I can’t say that there haven’t been challenges – I have brain fog, endocrine decline, cognitive/memory issues - all things I knew were possibilities. And going through all the treatments during Covid restrictions added an extra wrinkle to a very difficult process. But I’m so thankful for my dear partner, family, friends, the terrific NHS staff - and all the events that unfolded, from the optometrist at Specsavers to the registrar to the radiographers, dosimetrists, and so on who have extended my life. And I’m proud that it’s available to anyone who is medically viable for, regardless of status.

My name is Kay. I’m 64 and retired. My story began in January 2011 while shopping in Tesco’s, when I started to experience double vision. I didn’t know what was happening to me so we made a quick exit home. Luckily my husband was driving as my sight was getting worse and I could see an extra lane of traffic in a single lane area! Very disturbing!!!!! I decided to walk to work the next day and not drive. I booked an optician and doctor’s appointment. The next morning I tried to walk to work but didn’t get far due to the double vision. I was in tears and returned indoors as I couldn’t focus! I had also suffered with sinus headaches for a few years, but thought this was normal as my mum and brother suffered with migraines!

After my optician appointment I was told I needed prisms to correct my vision and a blood test to determine if there was an underlying medical condition as it had come on so suddenly! My doctor took a blood test which was normal, then referred me to the eye hospital. Throughout 2011 I had various eye tests and blood tests but the eye hospital couldn’t explain why I had double vision. As time went on I was having stronger prisms on my glasses to correct my vision. Almost a year later, in December 2011, I had my first MRI which I was told was normal too! Another year passed none the wiser as to why I had developed double vision. I was desperate to try anything and turned to acupuncture in 2013. To my astonishment my vision over the next 6 months was improving and I started to have weaker prisms put on my glasses. I was still under the eye hospital at that stage and they were talking about discharging me because of the improvement in my double vision, but I asked to be kept on because my eye still felt unstable and occasionally flickered.

In 2014 we went away for a 3 week holiday unaware that I urgently needed another MRI! When we returned there were several messages left on my answerphone asking me to make contact. I phoned and told them we were away and was booked in straight away! I was also asked if I was ok???? which seemed strange at the time but I now know why!

I attended the MRI and was quickly asked to come in to chat about the results. I was told there was something on the MRI and I would have to see the Neurology consultant at Hurstwood Park Centre in Hayward’s Heath. I had the biggest shock of my life! I sat in the room and the consultant said to me ‘I’m sorry there has been a mistake’ I couldn’t guess what he would say next? On his screen he showed me my 2011 MRI and next to it the latest 2014 MRI. He told me I had a tumour which had doubled in size since 2011! I sat there in disbelief!!!! Next I had a biopsy and after several weeks of waiting it was confirmed it was a Chordoma. I had never heard of this and was told I was 1 in a million and would need proton beam treatment. At the time it was unbelievable, but afterwards I realised how rare this condition is.

After an investigation into what went wrong, it turned out that there was a complete paragraph missing from the report accompanying the 2011 MRI. The tumour had been reported but not typed up! I was told they check for typography errors but not for missing paragraphs (the system was later improved). I was also told it made no difference being operated now rather than earlier as the tumour was slow growing. I have accepted this and moved on, but it was very upsetting at the time.

I was rushed through quickly and in September 2014 I had transnasal endoscopic surgery at King’s College Hospital to remove the Chordoma. Unfortunately I had spinal fluid leaks that meant I needed 4 further operations to repair the dura. After 2 months in hospital, 5 operations and 2 weeks of antibiotics I finally went home. I was feeling quite weak but knew I must get my strength back for the next leg of my journey, overseas for proton beam treatment. A few months later, in March 2015, I was sent to Switzerland for 2 months of proton beam treatment, which is another story in itself!



After the tumour was removed I had permanent double vision and the only way to get clear vision was to wear an eye patch over the damaged eye and use just my good eye. Luckily in August 2018 I was offered transposition eye muscle surgery at King’s to realign the eye, which transformed my life! I now have single focus looking straight ahead, which is the icing on the cake! I still have a bit of double vision looking right, but it’s nothing compared to before, when I couldn’t walk without patching my eye and would frequently veer off the pavement! As for the headaches, I used to have boxes of sinutab in my cupboard and haven’t needed one since the Chordoma was removed. In fact I have only suffered with a few headaches over a 5 year period, so all is good!



After all the treatment and ops, I could never imagine I would be the same person again, but by 2017 I was back dancing and enjoying life to the full! I am so grateful to the wonderful doctors and nurses at King’s College Hospital and all the team at the proton beam centre in Switzerland. I feel I have been given the best treatment possible! It has truly been a miracle that I am back to my old self, enjoying life and making the most of everyday. It has been 6 years since I had the tumour removed and I am still doing very well! I have an MRI at Kings college hospital annually or sometimes 6 monthly to keep an eye on me, which is reassuring!



My daughter Charlotte Kenward is swimming 5km in the River Adur on the 11th September and raising funds for Chordoma research through Just Giving. I am so proud of her.



I hope my story will reassure anyone starting out on this journey that there is light at the end of the tunnel! My family and friends have given me overwhelming support and prayers when I needed it most! A big thank you to everyone! I love you all xxxx



Kay Wilson

Hi!

My name is Sylvie and I would like to share a part of my story with you.

In August 2016, my boyfriend of 8 years proposed to me and we agreed to have a 2 year long engagement so that we could take our time in planning our perfect wedding... life was good!!!

Few weeks later, everything changed after I suffered from a stroke in September 2016.
After months of intensive tests, multiple hospital stays and MRIs to find out the reason of why it happened, the answer came through in December 2016, that I had a hole in my heart which had probably been there since birth - my neurologist at UCLH informed me that heart surgery would be the best option to reduce the risks of having another stroke and referred me to a cardiologist at St Bartholomew's Hospital.

Wow! What a scare that was - but after 3 months of intensive re-education and daily physio, I felt better and stronger and ready to move on with 2017!

As January 2017 arrived, I felt positive that I had gone through the worst and that things could only get better from now on and I could finally start working on planning our wedding for the following year....
Unfortunately that was short lived as on a follow up visit with my neurologist, he informed me that he had sent the previous MRIs of my head to one of his colleague at the NHNN in Queen Square London as he wanted him to have a look at something that seemed “unusual” at the base of my skull.

A week later I met with Professor Choi at the NHNN who told me that I had a tumour in my head but that it couldn’t be identified as yet so I would need to have another MRI in March to see if he could get clarification on what it was and take it from there.
A week after I had that second MRI at the NHNN, I was asked to come and see Professor Choi again who informed me that he had now identified the tumour as a Chordoma ... I made him write that strange name down as obviously like you all I had never heard of that word before!

And this is where my life with chordoma started in March 2017.

The unknown was very stressful and it was very frustrating not to find any information anywhere on what Chordoma was and how or if it would affect me. It felt like I had a very lonely battle ahead...
Thankfully I found the Chordoma Foundation who directed me towards their Facebook page where I was able to communicate with others all over the world and also met up with an other patient of Professor Choi who had gone through it all a few years before me.

The rest of 2017 was spent in what I call a “medical fog” with multiple hospital stays starting in May 2017 with the endoscopic endonasal partial resection of the chordoma, followed by a CSF leak and lumbar puncture and drainage, then meningitis in June, sinus infection in July, heart surgery (PFO closure) in August and 41 rounds of Proton Beam Therapy in America from September to December!

I was glad to see the end of 2017 when I came back to the U.K. and was full of hope for the new year to come as surely it could only get better ... right?!!!
Well it didn’t start very well as I spent 3 weeks in hospital in January 2018, fighting post proton hormonal issues!

Going through all this since September 2016 could have easily broke me down mentally but I chose not to let it and instead used this time to focus on preparing our wedding - which was also going to be a big celebration of life now.
I remember nurses from all the various hospitals I attended, checking my wedding plans and drawings with me in the middle of the night when the wards were quiet!

We got married in August 2018 and even had my Proton nurse from America here with us, as we had formed such a strong friendship!

Having a lot of post proton and post stroke issues has been really difficult as I am no longer able to do as much as I use to - so I’ve had to accept and adopt a “new normal”.
Since I no longer had a wedding to plan and I felt stronger, my doctor agreed that I could finally start going back to work on reduced hours from September 2018.

It took me a while to adjust and adapt to the new routine and some sort of day to day normality but I got there eventually - however it didn’t feel enough!
I had this “need” to focus some of my mental strength and energy constructively rather than taking them for granted - which is when I started researching the world of Cancers, researches and fundraising.

I was totally distraught finding out that there was so much injustice in the fact that Chordoma was left out of most of the national Cancer donations happening constantly all over the country (and the world) and the only way that Chordoma U.K. could carry on with researches was thanks to personal and direct donations.

I therefore chose to put my focus on spreading awareness on chordoma and finding ways to raise funds for Chordoma U.K. on every occasions that I could (by handing leaflets every where I go, organising raffles, sponsoring team Chordoma U.K. for the London Marathon ....)
I still felt that I could do more so I spent many sleepless nights going over things in my head until it hit me! We needed a National Chordoma Day to raise awareness all over the country and bring the Chordoma family together.

I got in touch with Gerald and Richard from Chordoma U.K. who invited me to discuss my ideas at their next trustees meeting and from then on, I presented my project at the “Meet the expert” evening which took place in January 2020 and agreed to coordinate it all and have our National Chordoma Day in September 2020 under the umbrella “Walking towards a cure” with the aim or creating national awareness and raising funds for the research into chordoma.
Due to COVID-19 this has now been postponed until Sep2021 so watch this space!

My journey with Chordoma is a bumpy one, full of ups and downs and a lot of uncertainties but it’s also one that has changed me in so many ways physically and mentally - and one that I want to use to help others starting or going through the same journey so that they do not feel alone or left out like I sometime did but so that they know they have a family that they can turn to - a Chordoma family.

I will end this with the motto that we have created for our soon to be National Chordoma Day:
Without funds - there will be no research
With research - there will be hope


Sylvie Leslie


To donate to Chordoma U.K just follow this link:

https://www.justgiving.com/fundraising/Sylvie-Leslie

In 2011 Martin then aged 69yrs woke with a pain in his lower back. As a man who was normally fit & well, he initially thought he had pulled a muscle, but after taking Ibuprofen for a few days with little relief he made an apt to see his GP. A week later when analgesics hadn't given any relief the GP referred him for physiotherapy. The wait for 1st apt was 9 weeks & as he did gain some relief from physio initially his GP then referred him to a sports physio gym which turned out to be just circuit training. This set him back again.

I then went with him to the GP & requested / demanded a 2nd opinion; ( I worked in the nhs & requested he saw Mr Brad Williamson, a highly respected spinal surgeon at Salford Royal hospital). We saw him privately 2 days later where an mri showed he had a mass at L3/4 which was suspected to be a haemangioma. Initial treatment was oral medication ( heart medication which was being trialled as it had been shown to shrink tumours) which did in fact shrink the mass over a 4 month period. However in Feb 2012, Martin started suffering severe pain ongoing over 24/7 which was not relieved with any analgesia, he was in agony & which quickly progressed to loss of use of his legs. He was admitted to hospital urgently under Mr Williamson & endured 13 hours in theatre where 90% of the tumor plus L3 & 4 were removed, 10% of the tumour was wrapped around the spinal chordoma was left in situ. Titanium rods & a cage were inserted & cadaver bone was grafted. The doctors told us that it wasn't a haemangioma. But they didn't know what it was. It was 8 days later that a diagnosis of chordoma was made - only one of the professionals had seen/ heard of chordoma before that. After 11 days he came home unable to use his left leg - (his femoral nerve had been squashed behind a retractor when the went in via his abdomen after the spinal wound had been sutured). It took 6 months before he could walk without crutches & a year before walking unaided. Meanwhile, once the wounds were fully healed, Martin attend the Christie Manchester & had 36 sessions of radiotherapy (he was turned down for proton beam therapy). He has worked hard to get back to full fitness & still undertakes twice daily walks with the dog.

In July following his annual mri, his consultant at the Christie, stated he was now considered to be "officially in remission" despite still having some residual tumour left which may start growing again at some point. 8 years on we count our blessings. It has not been an easy ride but we have moved on from making each day, then each month count. We now dare to think ahead & book holidays 1 year hence, hoping we're not tempting fate. Martin feels so grateful that he has a lumbar chordoma rather than sacral or clival. This is a horrible disease for those fighting it. As a carer I have so valued the support available once we found initially the Chordoma Foundation & latterly Chordoma UK. My hope is that we will soon be able to attend & meet others at a conference in the UK.

MY CHORDOMA STORY

It started sometime in 2000 when I felt a pain at the bottom of my back when I was sat down. After about four weeks the pain was gradually becoming worse so I decided to see my doctor. After an examination he didn’t know what was causing of the pain and he prescribed Ibuprofen tablets to ease the pain.
A month later with the pain not getting any better I decided to look at alternative methods to ease the pain and started by having a series of sessions with a Physiotherapist. The Physiotherapist advised me that it was a ball of matter at the bottom of my spine and after a few sessions suggested that I made an appointment with his friend who was into Reiki.
After a few sessions with the Reiki Therapist she agreed with the Physiotherapist that it was a ball of bad matter at the bottom of my spine.
After approximately three months of sessions of Physiotherapy and Reiki and my back showing no signs of improvement I decided to stop the treatment.
After months of doing nothing to find a solution for my back pain I decided to seek the help of a Chiropractor.
After a few months of sessions with the Chiropractor and my back showing no signs of improvement and actually the pain was getting worse I decided to end the sessions.
By now I was feeling excruciating pain in my lower back when driving and sitting down and decided to try acupuncture combined with Chinese herbal remedies. Again after a few months of acupuncture and no sign of improvement I decided to end the sessions.
After the Acupuncture treatment I noticed a slight swelling in the area where the pain was coming from but just thought that this was due to the suckers being used during the Acupuncture treatment.
By now five years had passed since my first appointment with my doctor and it was my daughter Gemma who suggested that I went back to see my doctor and demand further investigation into what could possibly be causing me so much pain.
August 2005 – Doctor makes an appointment for me to have an MRI scan at Warrington Hospital.
Two weeks after the MRI scan Gill and I returned to the hospital for my results. We sat in the examination room when the specialist and two students entered the room and the specialist put a negative up to the light box and immediately takes it back down and the three of them leave the room.
Gill and I had noticed a large circle on the negative to the base of my spine before it was taken away and we look at each other in horror.
The specialist and students return to the room five minutes later and tells us that I have a ball of matter the size of an orange attached to my coccyx and that he was referring me to an orthopaedic hospital in Birmingham for further tests.
One week later we received a letter from Royal Orthopaedic hospital in Birmingham asking me to attend the hospital whilst a biopsy is carried out.
Following the biopsy was the longest two weeks of our lives as we waited for the results.
Two weeks later we received a letter asking me to attend the Oncology Department for further scans. At the time Gill and I did not know what oncology meant, we were both in shock when we discovered that it meant cancer.
24th October 2005 – Attended the Royal Orthopaedic hospital for CT, MRI and CAT bone scans.
26th October 2005 - Following the scans we met Mr Grimer (who is now Professor Grimer) who was to become my surgeon. Mr Grimer explained that I had a rare form of cancer called a Chordoma and the only way to treat it was to have it surgically removed. As the tumour was very close to my bowel I would need to have a colostomy bag that may be reversed at some time in the near future if all went well.
He told us that it was a major operation and that it may take about 10 hours to perform, also I would have a very large wound running up my back. I would be in hospital for about three weeks and would need to learn to walk again. Also he advised that this form of cancer had a very high recurrence rate.
4th January 2006 – Went into theatre mid morning for my operation. Woke up from surgery mid afternoon in the ICU and shortly afterwards my wife Gill and then my two daughters Gemma and Gina was allowed in to see me, this was a very emotional time for us all.
Later that day Mr Grimer came to see me to see how I was feeling and told me that all went well with the operation.
The next week was spent in bed until I was well enough to learn to walk again. Back on my feet so my next goal was to walk up a flight of stairs so that I could be allowed home. Twelve days from arriving in hospital I was allowed home.
During my first month at home after my surgery I had my wound dressing changed and re packed every day at home, I was told that my wound was about 2” deep and required lots of packing each day. In the meantime I was getting used to my colostomy bag and started to go out for short periods at first then built up the time on my feet in stages. Finally after about six weeks from coming home I started to ride my bike again and gradually started to spend time in the office again.
All along since being diagnosed I was determined to stay positive and not to let it get me down, and in March 2006 I was examined by a specialist at Selly Oak hospital in Birmingham and had my colostomy reversed. During the procedure to reverse my stoma I got an infection in my bowel and I was not allowed home until the problem cleared up which took ten days to clear up.
April 2008 - Following a MRI scan it was discovered that my tumour had recurred. It was the size of my thumbnail and it was decided by my medical team that as it was so small my surgeon would try to remove it whilst in a CAT scan. When I woke up from the anaesthetic I was told that the operation was unsuccessful and that they would try again in a month’s time when the tumour had grown a bit more.
May 2008 – Had the second tumour removed successfully.
June 2011 – Following an MRI scan it was discovered that the tumour had once again recurred. Once again the tumour was very small but Mr Grimer decided to operate. Two weeks later I received a letter from Mr Grimer saying that he was please with the operation and that he had removed a lump around the area where he thought the tumour was. Following my three monthly MRI scan after my operation it was discovered that the tumour was still present and had in fact been missed due to the size of it. Mr Grimer decided to let the tumour grow sufficiently so that he was confident of locating it during surgery.
July 2012 – Had third tumour removed successfully. My medical team decided that it was highly likely that the tumours may keep recurring and it was decided that I was a good candidate to be considered for Proton Beam Therapy and that we would be applying for funding from the NHS as the treatment is not available in the UK and needed to be carried out in Florida. It was an anxious wait to see if the treatment had been approved by the NHS.
November 2012 – Received the fantastic news that our application for funding had been approved and that in January I was being sent to Florida for Proton Beam Therapy.
3rd January 2013 – Boarded a flight to Florida to undertake Proton Beam Therapy.
January to April 2013 – Spent three months in Florida to undertake Proton Beam Therapy.
My wife and grandson came out to spend some time with me for three weeks as this was the maximum that Liam’s school would allow him to have the time off school, we had a fantastic three weeks but it was a very sad time for me once they returned to the UK and I was on my own once more. Glad to say that Proton Beam Therapy will be available in Manchester and London in 2017 as it’s a fantastic treatment with little side effects, I believe that one day it will be the cure for cancer.
October 2013 – Scan all clear.
October 2014 – Scan all clear.
October 2015 – Scan all clear. During my consultation with Mr Grimer following this scan I told him that I had read some bad things about chordomas and that it was an incurable form of cancer, his reply to this statement made me feel fantastic, he said “Gary if there was ever any evidence that chordomas can be cured you are the living proof”.
Following this scan Mr Grimer wrote to my doctor which stated the following, “It was a pleasure seeing Gary today more than 10 years after I first met him with a chordoma of the sacrum. He remains completely symptom free and has made a very good recovery following proton therapy he had to the sacrum back in 2013. He has no bladder or bowel problems and he is otherwise symptom free” the letter concluded with the following sentence, “there is a very good chance that he has now been cured.
My inner thoughts during my journey.
Throughout this journey I have always remained absolutely positive that I will beat this cancer. I am eternally grateful to my wife Gill who has shared this entire journey with me and has always been with me during my treatments, consultations and scans and has been a great support for me. Whenever I have had to stay in hospital in Birmingham she has always stayed at either the hospital or local hotel so that she can be by my side as much as possible. I sometimes wonder if she actually realises how much I appreciate her love and support and I can’t thank her enough.
I am also grateful for the love and support from my two daughters Gemma and Gina, grandchildren Liam, Leah, Lexie and Lacey.
At times when I have read bad stuff on Google I have contemplated death and have always shared my thoughts with Gill who has always made me feel better immediately with her love and encouragement.
I now look at myself as a cancer survivor and would like to share this story with other people diagnosed with chordoma and show them that I am living proof that it can be defeated and that people should remain positive at all times throughout the journey.
Here’s to the future – Gary Shaw-Binns

Pass The Parcel.......

I write as someone who has witnessed my wife’s experience dealing with a pernicious disease and my observations in navigating the Healthcare system in the UK. This is an extremely truncated version of events and excludes many related hospital stays/ treatments/investigations.

I suspect our story may resonate with some in what appears a postcode lottery for a Sarcoma treatment system which in my opinion may be described as indifferent at best and inept and inadequate at worst.

In an attempt to simplify the story I have produced a table of the hospitals involved and have not personalised an impersonal system. In my experience the senior clinicians have feet in both camps and flit between the Private and NHS sector.

In the interest of brevity I will ignore the countless circuitous hours spent on the phone trying to find information from the respective MDTs /CNS/PA s etc or indeed the times in A&E at “A” who were incapable in this digital age of obtaining information from any other part of the system.

I am a retired Business Manager (with a now state owned Bank) having spent 40years mentoring businesses from start up to those turning over millions of pounds. I have personal experience of the internal politics of a multinational organisation and some idea of how an efficient business should be run by way of administration, communication and customer service.

Hospital Status Bone Sarcoma Team Distance from home

A NHS /Private No Local
B Private No Local
C Private No 50 miles North
D NHS No Soft Tissue (1 Regional) 40 miles North
E NHS No Soft Tissue (2 Regional) 45 miles South
F Private No 45 miles South
G NHS Yes (3 National) 160 miles East
H NHS Yes (4 National) 110 miles East

My wife experienced lower back pain and the GP diagnosed Coccydynia with the usual pain killers. The problem of course continued and a subsequent X ray revealed all was well.
Fortunately my employment provided Health Insurance and the GP referred us to “B” who confirmed Coccydynia and arrangements were made for a pain killing injection. The first injection did not work so a little while later a second was administered.

On 26 June 2007 I bought the Daily Mail newspaper and didn’t find the time to read it. The next day my wife was about to bin it, but thought she would thumb through to see if there was anything of interest to her. In the health section an article caught her eye “Doctors ‘cooked’ my spine tumour – now I am pain free”
The article detailed revolutionary treatment called HIFU for a rare cancer Chordoma at a hospital part of “H” group. The patient’s symptoms mirrored my wife’s.
We contacted “B” and whilst advised it was highly unlikely hers was Chordoma to placate us a MRI scan was arranged.
The MRI revealed a lesion, the biopsy confirmed Chordoma. Surgery was the recognised treatment and the work at “H” unproven and purely experimental. We were guided by the experts.
The operation to remove her coccyx and part sacrum was too risky for “B” so took place at “A”.
A complete excision was made, but with a poor margin and for some reason there was a delay in our referral to “C” who arranged for 6 weeks of radiotherapy at “D”.

There was a recurrence in 2010 “B” referred her to “F” where further surgery was undertaken followed by further 6 weeks radiotherapy at “E”.

October 2011 saw a further recurrence when “E” decided it was now time to refer her to “G”

In November 2011 we made the round trip of 320 or so miles (my wife in a great deal of pain and discomfort throughout) to “G”
We spent I guess 10/15 minutes at “G” and were asked the following questions:
Why had she not been referred before?
Why were there no up to date images?
I bit my tongue.
Distance has never been an issue and as a layman reliant on professional guidance (something I was used to giving in the financial world) began to wonder at what stage and by whom we should have been directed to “G” or “H”.
In the circumstances another appointment would be arranged for a month’s time.

An appointment was arranged for December 2011 and a few days before Christmas set off at 06.00 on the 160 mile drive to “G” for an early morning consultation. Concern was expressed at my wife’s pain and discomfort and an un-planned MRI scan took place that afternoon. We arrived home mentally and physically exhausted at 22.30 with the news still ringing in our ears that my wife had a previously undiagnosed serious problem with one of her kidneys that required urgent attention. We were given a letter to hand to our GP the following morning and “G” would contact “E” with their findings. Nothing could be done by “G” until the kidney problem was addressed by “E”.

Not the best Christmas ever as “E” appeared to have closed down for the holiday period. Early in 2012 we visited “E” who promptly referred us back to “A”. We visited “A” who confirmed on the 8th March that only one of my wife’s kidneys was actually working and nothing could be done. What happened to January and February?

We never returned to “G” as during one of my many phone calls trying to find out what was happening we learnt from an unexpected source that my wife’s tumour had become inoperable. This was a shock in itself and raised further questions about patient compassion.

During this period the Cardiac Team at “A” literally saved my life after suffering what they termed ” a significant heart attack.” To be fair I have nothing but praise for this part of the Healthcare System and the backup I have received since first class.

It transpires that “E” and “G” had trouble communicating with each other and in view of my health problems left it to our GP to re establish contact with “E” who arranged further palliative radiotherapy.

Now convinced (and it’s not just a case of throwing even more money at it) the system was incapable of looking after my wife’s best interest I became more questioning and pro active.

Had “E” considered Imatinab? No they had not, but they would look into it. Unfortunately investigation revealed it would be unlikely to be of any benefit.

In June 2013 “H” announced via the Chordoma Foundation (USA based) that they were recruiting for trials in the UK for HIFU as a possible treatment for Sacral Chordoma . I contacted “H” who responded immediately telling me medical etiquette dictated I couldn’t approach them direct so I contacted “E” who needless to say had no idea of the work being carried out at “H”.

In July 2013 “E” contacted “H” and in October 2013 we heard from “H” that they may be able to do something, but needed a MRI scan. We visited “H” for the MRI and in November 2013 were advised that due to size and position of the Chordoma they would be unable to help.

Ironically my wife recently developed a mysterious spot or lesion as it’s known in the trade and to meet Government targets our GP said the quickest way of dealing with this was to refer her to “A” who on examination of course referred her to “E”!

My wife now suffers severe mobility and pain issues and thankfully the local district nurses and hospice (a well run local charity) are in position to pick up the pieces of our fragmented Healthcare system. No arrangements are in place with ABCDEFGH for her ongoing monitoring and it is left to me keep an eye on the positive developments now being seen in Chordoma research both here and abroad. It concerns me that not everyone has the ability or is in a position to do this.

My name is Sue.. i'm retired and in my early 60's.. September 2012 my chordoma journey began..on arriving in France going on holiday, i noticed the horizon had a weird watery look, and as we approached our destination in Spain i had strange double vision when i looked left...nothing else..having thought.."should i cut short this 3 month stay and go home, we were struck by a terrible flood and went into shock.. so in mid December after cleaning solidly and sorting the big problem we arrived back in the uk.. Saw my GP (M.D. General Practitioner) straight away before Christmas, an MRI and CT scan and visit to neurologist told me I had a shadow on the bone.. huh!! Something to do with an infection to a route canal, this had caused me probs for a while...But straight after Christmas i had a call from a neuro surgeon at Southampton Hospital.. He said come in, in 3 days time and we will get rid of this "thing". So still non the wiser i found myself admitted and on the morning of the op, he visited and showed me the MRI. I thought this is no shadow, struck quite dumb and shocked, I underwent transnasal surgery. No problems and home in 3 days. He said the word chordoma; never heard of it and also he said be prepared to go abroad for treatment. So I recovered well and did much internet exploring and yes like all of us became an expert on the subject!! Met with my oncologist and he repeated the fact that I would need treatment abroad. Before that I needed a further debulking of the tumour in the base of my skull and behind my eye, in the cavernous sinus, to reduce it even more - that done we were off to Jacksonville, Florida by the middle of July, stunned by what was happening. The Florida Proton Centre was incredible. Very sociable, met other UK patients and as the treatment took up less than an hour a day we were off exploring - the NHS treated us proud. and we had none of the organising to do as all was done for us. We were there 11 weeks in all - 41 daily zaps with a mask, easy and not a problem, just felt tired, but it was hot that time of year. I had my first scan at Christmas 2013, showed the tumour was the same, no new growth.. 2nd MRI June this year (2014). also no new growth. I feel ok, just tired and try not to over do things and getting on with my retirement. I am enjoying raising money for the Chordoma UK research team. In June I flew to Frankfurt for a conference on the subject and thoroughly enjoyed it. So, hoping to keep well and carry on with life as long as possible and enjoy the grankids - no good worrying about what might happen. I have much faith in my doctors and long may it last, I think i have been lucky not to have headaches or any pain which can be so debilitating. My double vision after the 2nd operation and the deafness after the treament is now normal. Thank you doctors and surgeons, you have treated me well..

My name is Martin & I would like to share my story which entailed a long pathway through misdiagnosis to correct diagnosis in the hope that it may help others undergoing this experience

Having always been fit and active requiring very little in the way of health intervention during my life, it came a a surprise when in February 2011 (aged 69 yrs) whilst out walking the dog, I suddenly experienced a sharp pain in my lower back which caused me to stop walking for a few minutes.
I took anti inflammatory drugs for 2 weeks with no effect - so made an appointment to see my GP who diagnosed a pulled muscle and prescribed more medication - which had no effect. He then sent me for an X-Ray which showed nothing untoward and I was then referred to an orthopaedic specialist practitioner at the local hospital who diagnosed a partially prolapsed disc and prescribed a course of physiotherapy which didn’t help much - this was followed with a 4 week course of advanced physiotherapy (supposedly to strengthen my spine) which was in fact just circuit training with back exercises included. This made things a whole lot worse although I completed the course, returned to the GP & was prescribed stronger analgesics and told to see how things went! All this took a number of months.

In August 2011 My wife & I went on a cruise to Norway and during the last part of the cruise, one night I collapsed with the most severe pain I had experienced. I was was transferred to the ships medical facility and put on an IV Paracetamol drip & given strong analgesics. The ship docked in Southampton the following day & I was transferred home and advised to see my GP.

My wife then attended the GP ( different one) with me and insisted on a second opinion with a spinal surgeon and an appointment was made for us to see MR B. W. 2 days later at a private hospital. What a change we experienced, after a thorough examination, I had an MRI scan whilst we were there & he telephoned a week later with the news that I had a tumour which appeared to be a heamangioma. He saw me the following week and explained that whilst this tumour was benign, surgery was not recommended because of the risk of extensive hemorrhage & he started me on a drug which although licensed for heart problems had been found to be beneficial in reducing the size of these tumours. A further MRI 3 months later showed there had in fact been a reduction and the tumour had shrunk, the pain was also well controlled and not as intense.

After 6 months (Feb 2012) he gave the all clear for us to travel abroad for a holiday. Disaster struck on the second day when my legs collapsed and I was unable to walk. Unable to get an early flight home, we hired a wheelchair & stuck it out for a week.
The pain quickly became unbearable despite a number of pain killers including large doses of Morphine and a further MRI showed the tumour was growing again and pressing on the spinal chord nerves. I was admitted to Salford Royal NHS Trust for surgery on March 13th 2012 - still under the impression this was a haemangioma and with warnings that I may well bleed to death on the table! - But, the pain was so excruciating, I would have agreed to anything.
I had excision of L3 & 4, + 90% of the tumour - the remaining 10% was left as it was wrapped around my spinal chord. Mr W then inserted two titanium rods to hold up the spine, surrounded the area with a mesh cage which was filled with cadaver bone chippings. 13 hours later I woke up in recovery and after a further 3 hours was transferred to ICU to recover.

The following morning I realised I was unable to feel/move my left leg and it transpired that the nerve had been bruised/caught under a retractor in theatre for a number of hours and I would have to wait and see if feeling returned.

Two days later I was informed that the tumour was not in fact a heamangioma but something very strange which looked suspicious and probably malignant and we would have to await the lab results for identification of the type of tumour. Meanwhile, as spinal tumours were usually secondary to others, I would be scanned again looking for a primary elsewhere. These scans revealed no other tumours in my body.
I remained in hospital for 3 weeks, recovering and having physo, some feeling started to return to my leg, but I was unable to walk without crutches and was advised it would take up to 6 months to recover strength in the leg.

During that time it was by the Grace of God that a young female oncologist (Dr T) who visited Salford Royal Hospital from The Christie Hospital ( World Renowned Cancer Hospital in Manchester) weekly to investigate any spinal tumours occurring in urology patients (I had previously had a benign enlarged prostate operated on), who, after looking at my notes/scans, realised it may be a chordoma - she was correct and my after care then transferred to her at the Christie Hospital.
This was a very frightening time, as we knew nothing about chordoma and my wife was desperately searching the web for information

It took 6 months for me to walk unaided with a stick and to recover my strength. During that time my wife was providing all my physical & emotional care 24/7 and, although she had many years of nursing experience, felt at times overwhelmed. My GP provided fantastic support to both of us, visiting me twice weekly initially, then weekly; he gave us his mobile phone number in case morphine and gabapentin doses needed titrating and was happy to liaise with the hospitals to get appointments changed or speeded up.

Also during this time, Dr T submitted a bid for funding for me to travel abroad to undergo Proton Beam Therapy but unfortunately this was rejected as I had too much metalwork in my back hiding the remaining tumour. Therefore the only option available to me was radiotherapy. I started this in November 2012 for 30 essions which were completed on December 2012.

During 2013 the nerve pain in my leg subsided, my strength increased to a stage where I was walking unaided and undertaking my normal lifestyle once again. 2 years on, I walk approximately 3 miles per day, I drive and even cut the grass again! I am off all medication and my only remaining symptom is an intermittent ache down my left thigh.

I see my surgeon annually for check ups and my oncologist 6 monthly following my MRI scans which to date fortunately have shown no regrowth or change since the one post op in 2012. Dr T has agreed that I will continue with 6 monthly MRI scans for 5 years and then annual scans for a further 5 years.

I feel very fortunate that despite the pysical and emotional turmoil I have undergone that my chordoma was lumbar, that despite initial misdiagnosis & frustration with the Primary Care element of the health service - my care since then has shown how our National Health Service is 1st class. My needs have been well managed by a wonderful oncologist and, that through the Chordoma Foundation & Chordoma UK we are in contact with many wonderful people who provided support and friendship over the last 3 years and without who’s advice we would not have coped so well - thank you all.
Meanwhile, we get on with our lives and take every month as it comes.

My name is Pete and I live in the UK. I'm 43 and this is my story. At the start of 2014 I had backache. I went to my GP when the pain started going down my right leg. They said at first it was just sciatica, and gave me painkillers saying it should clear up soon. When it didn't I went back and they referred me to a spine expert, now thinking it could be a herniated disc pressing on my nerves. Took about six weeks to get an appointment to see the spine expert, who referred me to the hospital for physio and an MRI scan 'just to be on the safe side'. The physio treatment didn't seem to help much. Six weeks later I had the MRI on a Saturday morning. On the following Wednesday I got a call from my GP asking if I could go and see him. On the Thursday I got a call from the spine experts office asking if I could go back and see them. On the Friday I got a call from the hospital asking if I could go and see them. Thinking it sounded serious, I left work an hour early and headed for the ward number they'd given me over the phone. Chemotherapy and oncology. A doctor and the nurse who phoned me told me that there was some kind of cyst growing in the lumbar 4 bone in my spine. I was admitted that night and after several more MRI and CT scans, plus blood tests, I was transfered to Leeds hospital for surgery. The doctor said because the cyst was pressing on my nerves they would go in through my stomach to my spine, remove the bone, then roll me over and add two bars to fuse L3 to L5 together. What should have been an eight hour operation actually took twelve because they were being extra careful with my stomach. I had low blood pressure for a couple of days after the op and then there were questions on if my stomach was working correctly or if there was permanent nerve damage from the cyst. Samples of the cyst were sent off to some specialists in Birmingham and a few days later I was told it was a chondroid chordoma, which is very rare in itself, but even rarer to find it where I had it in my spine. It's now almost three weeks after the op and everything seems to be working. I feel like I'm learning to walk all over again as my back is stiff after the fusion. My left thigh feels numb occasionally but I've been told this might be due to a grounding pad for the cauterization knife they use in some surgeries, and I had one on my leg for about ten hours! I've been told that I'll need proton therapy and more MRI scans to keep an eye on my spine but for now I'm concentrating on recovering from the biggest operation I've ever had.
Thank you for reading !