A lifelong battle After 20 operations in 20 years, Marie Carolan is facing her biggest battle yet – but is determined to come out stronger The Interview Anton McNulty WHEN you have undergone 20 operations in 20 years, and all before your 30th birthday, the last thing you need is to be told that you have a malignant tumour at the base of your brain. For many it would be too much to handle, but for Marie Carolan from Glencastle in Belmullet, sympathy is the last thing she wants. As she says herself, ‘I don’t have time to get fed-up or get depressed’.
In March 2007, Marie found out she had a tumour on the base of her brain and had to undergo surgery abroad after being told the surgery could not be performed in Ireland. For Marie, it is just another example of the poor hand life has dealt her but anyone who has encountered the 29-year-old knows she will deal with it with humour, grace and courage, as she has for most for her life.
Marie’s luck in life did not get off to the best of starts. She was just 15 months old when she was diagnosed with Ollier’s Disease, which affected the growth of her bones. It is so rare that only two other people in the country are affected by it. At the age of eight, her left leg was 10cm shorter than the right one, and without any treatment for it in Ireland, Marie would have been wheelchair-bound at least into her teens.
However, after much research and help from family and friends in England, she got an appointment with a surgeon in Sheffield who was doing pioneering work in the field of limb lengthening. In 1988, Marie and her mother Mary went to Sheffield for the first leg lengthening procedure. In order for them to be near the surgery base, they had to live in nearby Lincoln for a full year, away from her family and friends.
The procedure involved the breaking of a bone and the fitting of a device called an external fixator, which is a system of pins, rods and clamps placed on the outside of the body to hold fractured bones in place while they heal. Screws on the fixator were turned four times every day which led to a new bone being formed in its place. However, infections often appeared and Marie endured agonising pain while the infections were cleaned.
Over the next two decades, she kept making the journey back to England where similar steps were taken to lengthen both her arms and legs. While this caused a disruption to her education, she never let it get in the way of having an active life, which included managing to drive, swim, jet-ski and golf, despite having the device for company.
It was when Marie thought all her surgeries were over that she suffered her biggest set-back – and the cause of her current problems. She was contemplating going to college when she started to get headaches, but she brushed them off as just fatigue from her work. In August 2006, Marie suffered double vision while driving to work and made the mistake of only going to her optician, which led to the tumour diagnosis being delayed for a couple of months.
“My optician referred me to a specialist in Castlebar, who in turn referred me to Galway. The person in Galway sent me back to Castlebar because I had not been seen in A&E. I queued for about two days in A&E, and was basically kicked out of the hospital by a surgeon who reckoned I was a drama queen with a migraine. At this stage I constantly had double vision and went to my GP and explained everything. He immediately made an appointment with the main surgeon in the Mater Private. I went for the scan and once the consultant saw it, he kind of freaked out because he said he had not seen anything like it. I had a number of scans and, on St Patrick’s Day of 2007, I got a phonecall from them and they asked me to go in on Monday morning for surgery,” she explained.
It is common for sufferers of Ollier’s to experience benign tumours on the bone, but a tumour on the brain as a result of Ollier’s is largely unheard of. Marie thought the procedure would be routine, but nothing in her has been routine. The biopsy performed in March 2007 reported that the tumour was low-grade malignant and the operation to remove it could not be performed in Ireland.
The case was referred to the Marie Curie Institute in Paris where a procedure called Proton Beam Therapy was advised. But again Marie was left frustrated when she faced more delays and hold-ups. Her case files were sent to Paris in May but they heard nothing from the hospital who didn’t return any of her e-mails and queries. Taking the matter into her own hands, she went to Paris and walked off the street into the hospital and demanded an appointment with the consultant.
“We got an appointment three weeks later with the consultant but he didn’t explain why he hadn’t been in touch or how long he thought he would wait and watch the tumour to see if it would grow any more. We thought he was playing a game with it. He just explained about the surgery procedure but was reluctant to perform. The headaches got worse at Christmas and I had a repeat MRI scan at St Vincent’s, where staff reviewed and compared the scans. They found the tumour had not grown but it had changed shape and more pressure was put on a nerve. We sent scans over to Paris and heard nothing back.”
It was after Christmas that Marie, by chance, became aware of a cancer surgeon in New York who came from Galway originally, and in March of this year she e-mailed her case to him. Three days after he received all her scans and surgical notes he had reviewed the case and referred her to a surgeon in Pittsburgh, who was a specialist in cancer treatment. The risks of the procedure which could be carried out in Paris included partial blindness or deafness, but Marie was told that the procedure to be carried out in Pittsburgh involved just normal surgical risks. The choice was taken to go the Pittsburgh route, but they were advised the surgery will cost up to half a million dollars.
On the Whit Bank Holiday Monday last, Marie, her mother and up to 15 other people from the Glencastle area ran the Women’s mini-marathon in Dublin in aid of CARA Iorrais, the local cancer support group. After just finishing the race, in a time of one hour and 47 minutes, Mary’s mobile phone rang and on the other end was a representative from the Pittsburgh hospital.
“I had just finished the race when I got the call and the Dublin Fire Brigade were hosing us down with water and I was trying to keep the phone dry and talk to the person from Pittsburgh. It was absolutely brilliant to finally talk to someone over there because I knew they had received the file but didn’t know when they would be able to see me.
“They want me over there on June 17 for consultation, and there could be three surgeries within a space of ten days. I was told that the surgery would cost approximately $400,000, which will include a possible second surgery. If they have to perform a third surgery it will be more than that; I was only given a ball park figure, it could be less, it could be more.
“If everything goes well, I would hope to have surgery at the end of August. But the hospital want proof that the money is in place and they asked me how I intended to fund it. I will have to take out some sort of mortgage to cover it, and while there have been various fundraising efforts, we need the money now. From what I understand, the hospital would be looking for half the payment before and the other half after the procedure, but they will need proof that it is there.”
Fundraising has already started within the Erris community, with €5,000 raised in just a week, through a number of local initiatives. However, Marie and her family know that to raise the type of money needed in such a short space of time, they will need to get loans from banks. The Irish Government had agreed to pay for surgery for the procedure in Paris, under an EU Healthcare agreement, but paying for surgery in the US is not guaranteed. At this moment the thought of the tumour on her brain is the least of Marie’s worries; coming up with the money is the stressful part.
“Trying to get funding and wondering if the Government will pay and who to contact about it is more stressful than when I was diagnosed. That was the easy part, this is ridiculous. There is nobody to advise you and it is extremely stressful. This is just unreal and difficult to deal with. When I was diagnosed, I was on steroids for four months where I blew up from a size eight to about 18. I doubled in weight and was like the Michelin woman. I have constant double vision and headaches and it is difficult to fit in time to get some exercise, hold down a job and try and organise things for the surgery. I have not even thought about what I want to do after the surgery, I just want to sort out this mess first,” she said.
Despite all the distractions in her life and having to take up to 20 tablets a day, Marie has a positive outlook on life and does not let her illness stop her from doing anything. As if to emphasise this point, she recently bought a canoe and said she will try anything once.
On top of that she is actively involved in the community as an emergency medical first responder and works as a secretary with Roadbridge. She praised the community spirit of the people of Erris, who have been so supportive and who have said they will help in raising money for the surgery.
However, it is her father, mother and her three brothers and sister to whom she will forever be most grateful for always being there for her.
“My family have been brilliant because they did suffer when it all started off because myself and Mum were in England and they had no mother for the year. My youngest brother started school when Mum was in England and it was my Granny who walked him to school. It was a pain for him and it was hard for them all. My sister once asked me why was this always happening to me. Well, I’m very happy for it to happen to me rather than it happening to one of them.”
To learn more about Marie and the upcoming fundraising efforts of the Marie Carolan Fund go to her Bebo page, www.bebo.com/marieC1919. An account for the Marie Carolan Fund has also been set up and all donations are welcome. Details of the account are Marie Carolan Fund, Ulster Bank, Belmullet, sort code 98 53 14.WHEN you have undergone 20 operations in 20 years, and all before your 30th birthday, the last thing you need is to be told that you have a malignant tumour at the base of your brain. For many it would be too much to handle, but for Marie Carolan from Glencastle in Belmullet, sympathy is the last thing she wants. As she says herself, ‘I don’t have time to get fed-up or get depressed’.
In March 2007, Marie found out she had a tumour on the base of her brain and had to undergo surgery abroad after being told the surgery could not be performed in Ireland. For Marie, it is just another example of the poor hand life has dealt her but anyone who has encountered the 29-year-old knows she will deal with it with humour, grace and courage, as she has for most for her life.
Marie’s luck in life did not get off to the best of starts. She was just 15 months old when she was diagnosed with Ollier’s Disease, which affected the growth of her bones. It is so rare that only two other people in the country are affected by it. At the age of eight, her left leg was 10cm shorter than the right one, and without any treatment for it in Ireland, Marie would have been wheelchair-bound at least into her teens.
However, after much research and help from family and friends in England, she got an appointment with a surgeon in Sheffield who was doing pioneering work in the field of limb lengthening. In 1988, Marie and her mother Mary went to Sheffield for the first leg lengthening procedure. In order for them to be near the surgery base, they had to live in nearby Lincoln for a full year, away from her family and friends.
The procedure involved the breaking of a bone and the fitting of a device called an external fixator, which is a system of pins, rods and clamps placed on the outside of the body to hold fractured bones in place while they heal. Screws on the fixator were turned four times every day which led to a new bone being formed in its place. However, infections often appeared and Marie endured agonising pain while the infections were cleaned.
Over the next two decades, she kept making the journey back to England where similar steps were taken to lengthen both her arms and legs. While this caused a disruption to her education, she never let it get in the way of having an active life, which included managing to drive, swim, jet-ski and golf, despite having the device for company.
It was when Marie thought all her surgeries were over that she suffered her biggest set-back – and the cause of her current problems. She was contemplating going to college when she started to get headaches, but she brushed them off as just fatigue from her work. In August 2006, Marie suffered double vision while driving to work and made the mistake of only going to her optician, which led to the tumour diagnosis being delayed for a couple of months.
“My optician referred me to a specialist in Castlebar, who in turn referred me to Galway. The person in Galway sent me back to Castlebar because I had not been seen in A&E. I queued for about two days in A&E, and was basically kicked out of the hospital by a surgeon who reckoned I was a drama queen with a migraine. At this stage I constantly had double vision and went to my GP and explained everything. He immediately made an appointment with the main surgeon in the Mater Private. I went for the scan and once the consultant saw it, he kind of freaked out because he said he had not seen anything like it. I had a number of scans and, on St Patrick’s Day of 2007, I got a phonecall from them and they asked me to go in on Monday morning for surgery,” she explained.
It is common for sufferers of Ollier’s to experience benign tumours on the bone, but a tumour on the brain as a result of Ollier’s is largely unheard of. Marie thought the procedure would be routine, but nothing in her has been routine. The biopsy performed in March 2007 reported that the tumour was low-grade malignant and the operation to remove it could not be performed in Ireland.
The case was referred to the Marie Curie Institute in Paris where a procedure called Proton Beam Therapy was advised. But again Marie was left frustrated when she faced more delays and hold-ups. Her case files were sent to Paris in May but they heard nothing from the hospital who didn’t return any of her e-mails and queries. Taking the matter into her own hands, she went to Paris and walked off the street into the hospital and demanded an appointment with the consultant.
“We got an appointment three weeks later with the consultant but he didn’t explain why he hadn’t been in touch or how long he thought he would wait and watch the tumour to see if it would grow any more. We thought he was playing a game with it. He just explained about the surgery procedure but was reluctant to perform. The headaches got worse at Christmas and I had a repeat MRI scan at St Vincent’s, where staff reviewed and compared the scans. They found the tumour had not grown but it had changed shape and more pressure was put on a nerve. We sent scans over to Paris and heard nothing back.”
It was after Christmas that Marie, by chance, became aware of a cancer surgeon in New York who came from Galway originally, and in March of this year she e-mailed her case to him. Three days after he received all her scans and surgical notes he had reviewed the case and referred her to a surgeon in Pittsburgh, who was a specialist in cancer treatment. The risks of the procedure which could be carried out in Paris included partial blindness or deafness, but Marie was told that the procedure to be carried out in Pittsburgh involved just normal surgical risks. The choice was taken to go the Pittsburgh route, but they were advised the surgery will cost up to half a million dollars.
On the Whit Bank Holiday Monday last, Marie, her mother and up to 15 other people from the Glencastle area ran the Women’s mini-marathon in Dublin in aid of CARA Iorrais, the local cancer support group. After just finishing the race, in a time of one hour and 47 minutes, Mary’s mobile phone rang and on the other end was a representative from the Pittsburgh hospital.
“I had just finished the race when I got the call and the Dublin Fire Brigade were hosing us down with water and I was trying to keep the phone dry and talk to the person from Pittsburgh. It was absolutely brilliant to finally talk to someone over there because I knew they had received the file but didn’t know when they would be able to see me.
“They want me over there on June 17 for consultation, and there could be three surgeries within a space of ten days. I was told that the surgery would cost approximately $400,000, which will include a possible second surgery. If they have to perform a third surgery it will be more than that; I was only given a ball park figure, it could be less, it could be more.
“If everything goes well, I would hope to have surgery at the end of August. But the hospital want proof that the money is in place and they asked me how I intended to fund it. I will have to take out some sort of mortgage to cover it, and while there have been various fundraising efforts, we need the money now. From what I understand, the hospital would be looking for half the payment before and the other half after the procedure, but they will need proof that it is there.”
Fundraising has already started within the Erris community, with €5,000 raised in just a week, through a number of local initiatives. However, Marie and her family know that to raise the type of money needed in such a short space of time, they will need to get loans from banks. The Irish Government had agreed to pay for surgery for the procedure in Paris, under an EU Healthcare agreement, but paying for surgery in the US is not guaranteed. At this moment the thought of the tumour on her brain is the least of Marie’s worries; coming up with the money is the stressful part.
“Trying to get funding and wondering if the Government will pay and who to contact about it is more stressful than when I was diagnosed. That was the easy part, this is ridiculous. There is nobody to advise you and it is extremely stressful. This is just unreal and difficult to deal with. When I was diagnosed, I was on steroids for four months where I blew up from a size eight to about 18. I doubled in weight and was like the Michelin woman. I have constant double vision and headaches and it is difficult to fit in time to get some exercise, hold down a job and try and organise things for the surgery. I have not even thought about what I want to do after the surgery, I just want to sort out this mess first,” she said.
Despite all the distractions in her life and having to take up to 20 tablets a day, Marie has a positive outlook on life and does not let her illness stop her from doing anything. As if to emphasise this point, she recently bought a canoe and said she will try anything once.
On top of that she is actively involved in the community as an emergency medical first responder and works as a secretary with Roadbridge. She praised the community spirit of the people of Erris, who have been so supportive and who have said they will help in raising money for the surgery.
However, it is her father, mother and her three brothers and sister to whom she will forever be most grateful for always being there for her.
“My family have been brilliant because they did suffer when it all started off because myself and Mum were in England and they had no mother for the year. My youngest brother started school when Mum was in England and it was my Granny who walked him to school. It was a pain for him and it was hard for them all. My sister once asked me why was this always happening to me. Well, I’m very happy for it to happen to me rather than it happening to one of them.”
To learn more about Marie and the upcoming fundraising efforts of the Marie Carolan Fund go to her Bebo page, www.bebo.com/marieC1919. An account for the Marie Carolan Fund has also been set up and all donations are welcome. Details of the account are Marie Carolan Fund, Ulster Bank, Belmullet, sort code 98 53 14.
