This is our story. (sorry its so long maybe you could read it on your brew break ;-)
In 2002 mark (now my husband) was diagnosed with a brain tumour (Haemangiopericytoma of the left cavernous sinus). He was just 23 years old at the time. We had been together for just 1 year but were already in love and engaged to be married and nothing was going to change that. The bad news we received was a shock to say the least, Marks only symptoms started with numbness in the left side of his face leading to double vision in his left eye and head aches.
Mark had an operation to remove the tumour and we were told that it was not malignant. Unfortunately, the surgeon was unable to completely remove it due to its difficult and dangerous position on the brain stem and around 9 months after surgery, Mark spent 7 weeks in London having Stereo Tactic Radio Therapy. Mark was to continue having regular scans to keep a check on the tumour for further growth and for a while the scans were every six months, but after the tumour had lay dormant for 3 years they were reduced to once a year. In the summer of 2006 after a lot of saving we finally booked our wedding for the summer of 2007.
On valentines day 2007 we got the news that Marks tumour had grown significantly. We naively assumed that since the tumour was a low grade or ‘slow grower’ that if it did ever grow again, Mark would surely just need a little more radiotherapy and we were far from prepared when they told us he would need brain surgery for a second time. Its not like having your tonsils out!
I was devastated. I tried to be strong and positive, especially in front of Mark but deep down I was terrified of him going through another operation. We were told to come back in a few weeks to discuss this with a surgeon and were just beginning to come to terms with the news when we received worse news. We were told that the scans had been looked at in a meeting and all the surgeons had agreed that it was too dangerous to operate on the tumour now. It had gotten too big and was too difficult and it was thought that the side effects of such surgery would be too severe. Well this made me even more devastated. Now I wanted this thing out, but instead we were referred to a radiotherapist because this we were told, was the only possible treatment for Mark now.
Again we waited ages for an appointment. We were strong together and positive but when we finally saw the Dr, we were again unprepared for more bad news. The radiotherapy specialist had looked at Marks history and decided it was too dangerous also, to give more radiotherapy. Apparently which we were never told, you can only have a certain amount of radiotherapy on the brain before it begins to damage the brain and Mark had previously had a very hefty dose of this in London.
There was a brief mention of ‘Proton Beam Therapy’ which is a safer form of radiotherapy and could be effective on Marks tumour. We do not have facilities to perform this treatment in the UK. Other countries have it, including Paris which is in the EU (which meant we could apply for the money from the PCT to pay for treatment in Paris.) Marks scans were sent to Paris and we waited for a reply.
Correspondence between countries was extremely slow. Mark and I married on June 13 2008. Despite everything this was important to us both. We tried for a baby and were thrilled to be successful. A welcome distraction from all the waiting and bad news.
We were called back to the hospital and told that doctors in Paris would not perform the treatment for Mark because they did not think that Proton Beam Therapy would be effective on Marks tumour. Then came the words that rang in my ears for weeks to come - “all we can do for you now Mark, is to just treat the symptoms as they occur.” In other words, we’ll give you drugs for the pain and the epilepsy which are inevitable and keep increasing them until this tumour takes your life. I asked the doctor to send Marks scans to America. We would have to fund the treatment ourselves. £85,000 worth, for which we would need to sell our house and do much more fund raising but this would be a small price to pay for Marks life. Our specialist had experience with Proton Beam therapy. He wasn’t sure if it would treat Marks tumour because Marks tumour is so rare but he thought there was a chance. If there was even the slightest chance then that was enough for me.
I could see they felt sorry for us but thought I was clutching at straws. They’d seen this a million times, people not wanting to accept that nothing more could be done but I didn’t care.
I persisted that we would get the money and go to America and so the Dr did as I asked. I prayed everyday for some good news and not good at anticipating the news, we were again, unprepared. The American Dr had agreed that ‘Proton Beam Therapy’ would not be their treatment of choice for Mark. However, they recommended a surgeon from Slovenia who was an expert in this area of the brain and asked for our permission to forward Marks scans to him.
The surgeon was 67 years old at the time and worked in a hospital in Switzerland (in the EU) so we could apply for funding from the PCT. His email sounded confident and showed he was keen to operate on Mark. This was an emotional time. The Dr’s here, explained to us that the side effects of this operation were likely to be severe and that they did not know the surgeon, or the risks he was prepared to take. This was a terrifying thought. Travelling abroad to have brain surgery, almost against the advice given by our own specialist was the biggest and bravest decision Mark is ever likely to have to make.
We feared mainly for his life and how much damage might be caused to his brain, but we knew we had to do this and I think Mark did it for his unborn child.
We applied to the PCT and again had to wait for a reply. During this time we were told stories of people who had been turned away and not to get our hopes up. After 4 more weeks of waiting, I wrote them a letter begging for their help and the next day I received a phone call telling me they would pay. Mark had 10 days notice to get to Switzerland. I was 4 months pregnant and we set off for the most terrifying journey of our lives.
As soon as we met and spoke with the surgeon we felt much more positive. We were expecting to hear terrifying possibilities but instead he told us it would be fine and was so calm and confident that I think we both believed him.
Mark got the miracle we’d been praying for on 18 Jan 2008. Almost a year of waiting for appointments and receiving bad news after bad news. The operation was a success to say the least. The doctor explained to us that he had removed the whole tumour and Mark suffered no side effects from the surgery and is as fit and healthy as ever. Unfortunately the histology results showed the grading of the tumour had changed and was this time malignant and Mark continues to have regular scans. Our first son is 16 months old and we remain positive, so far so good. We have learned that nothing can be taken for granted in this life and we appreciate just how lucky we are. I thank god everyday that I still have my Mark by my side because I truly believe that it is down to him.
Mark and I want to give something back and hopefully help towards better knowledge about brain tumours in this country, which is why we are trying to raise money by doing the most horrible race we could find. IN JANUARY, THE COLDEST MONTH OF THE YEAR!!! (See above video/photos of the race) If you can donate any amount large or small, to help make this suffering worthwhile, it would be much appreciated ;-)
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