My Journey of hope!
My name is Majella, and I’m from Ireland. My childhood was filled with strange sickness including deafness, which thankfully is cured. I grew up in a normal Irish country family. I have one brother and no sisters.
When I was 13 years old, I developed a strange lump on my left leg, above the knee. It was huge, like 3 tennis balls, and it grew very fast. I was getting a lot of pain especially when I was walking or cycling. I was afraid of it, so I kept it a secret for almost a year. I even went to the doctor regularly but never had the courage to say it out loud. I remember getting in trouble in school for my uniform skirt getting shorter, but as the lump grew, my skirt got shorter!! I remember it was Halloween, I was helping in my uncle’s bar, and the next morning, I was changing my little cousin, when she kicked her leg out and happened to hit against my lump, and then it all came out.
I was taken to casualty and immediately sent to Tullamore hospital. The consultant I was under was going on holidays. I had many tests performed and then sent by ambulance to Cappagh hospital, where I was under Mr. Brian Hurson. He is one of my hero’s and I loved him, indeed, at 13 I was going to marry him!!. I was blest to have both Mr. Hurson and his wonderful Nurse Margaret Cavanagh. I had many many tests, and eventually, I was told I would be going for chemo in St. Vincent’s hospital. I was not afraid as Margaret Cavanagh held my hand through everything. Then after some more tests, it was revealed that it was actually a desmoid tumour not cancer on the aorta as previously thought.
Surgery followed to remove the lump, it was a long recovery, as I was to learn, i would get every infection going, which meant even more surgery. Over the next 3-4 years, I had two more surgeries and 30 radiotherapy treatments. They thought they would not be able to save my leg, but thankfully they did and I just ended up with a leg brace for some time, as I learned to walk again, with so much muscle gone, it was a hard journey. What I found very hard at that time, was my friends who of course were only children, but they got on with their lives, while I struggled to have a life. I recall lying in bed looking out the window one day, and seeing friends cycling by, but I had my family who were wonderful. When I was 17 they went away.
At that time, we did not understand what desmoids were, and indeed did not know that they were incurable. We just knew I had a rare cancer and that was it.
Faith played a big role in our journey with my health. It was my faith that gave me courage, and strength to face whatever was to come with each new day. I can truthfully say that nobody ever saw me without a smile and the knowledge that this would not beat me. I got involved in a group called canteen, this group was for teenagers with cancer. We had day’s outings and weekends away. It was wonderful to be with other young people who knew what I was going through. It was fun and gave me a focus and friendship. As some of my friends died, that was another emotion, I had to learn to deal with very young, but again my faith brought me through that. I did a lot of writing when I was sick and maybe one day, it is my dream to write a book about this journey. I then used my time to start fundraising and awareness of CanTeen and its great work. It was wonderful to be able to do something positive on the days that I was well enough. I also gave talks to young people to help them appreciate their health and to show them how important it is to make the right choices in their lives.
So normal life resumed, I went back to school, and repeated the year so that I could do my leaving certificate. My wonderful parents had left the pub, and moved to the town beside the school. After school, I volunteered in a day service for people with intellectual disability. I loved this work so I went to college and ended up working where I started with my volunteering. Life was good.
Then when I was 27, I put on a lot of weight and found I was getting very severe pain on and off down my groin and through my stomach. The doctors could not find out what was wrong with me and I ended up seeing a pain team in St. Luke’s hospital. This was so difficult. I found working so hard as I was in agony, even though I was on morphine. I couldn’t tell anybody, I developed a limp at that time and could only say it must be from previous surgeries. I was beginning to think I was I was going mad. I left work and continued to try and find out what was causing my pain, which would reach a peak, and when it did, I couldn’t get out of bed.
Eventually 18 months later, I rang my radiologist that I had when I was younger, a brilliant man, Dr. Michael Morriarty. All my scans were coming back clear, but he knew me and kept doing more tests, and he ordered a PET scan. This was the proof I wasn’t going mad, as it showed a small lump on in my abdomen. This was biopsied and of course, it was a desmoid.
I then was referred to Mr. McDermott, a surgeon in St. Vincent’s hospital. I met him the next day and he agreed to operate as my pain level was unbearable. I decided as it was going to be a small surgery that I wouldn’t tell anybody, as I didn’t want people worrying and I thought I would be out a week or so later! It was after this surgery I realised, my surgeries never go to plan!
My operation was scheduled for 16 July, when I woke from that surgery, I was shocked at the fact my whole abdomen was covered in dressings. When they went in to operate, they found the tumour was an awful lot bigger than it showed on the scan. They removed a lot of muscle and had to shave my pelvis bone, and put in some mesh. When eventually I was able to walk, I started to swell; I was sent home and could not eat or move. A friend brought me back to the hospital and at this stage, I was very swollen. An emergency surgery had to be performed that night as my bowel was becoming enstrangled. I remembered I had been drinking a mineral, and the junior surgeon scheduled the surgery for 11pm, but when the senior surgeon Mr. Evoy came in, he said, it couldn’t wait as I could be dead by night time! Scary stuff.. Still nobody knew what was going on!
When i woke from the surgery, at last, the pain wasn’t as bad. They also removed two litres of infection that was sitting on the mesh. Some days later, I was to see the ugliest thing I have ever witnessed. They had left me open from the breast bone to the waist. Yuck yuck yuck!! Unfortunately my body was rejecting the mesh so they had to clear the infection by hand, it was horrific! Eventually I had a vac pack which was a life saver. It was now November! I was expecting to be back to normal by August at the latest! I had the vac pack as I was discharged, then I got the hospital bug MRSA.
It was December when the wound eventually healed. At the beginning of January, I noticed the same pain returning and knew that these horrible things were back, and they came with avengence.
I was back in hospital and had to be isolated as I still had MRSA. When they got the infection under control, I had to go back for surgery. The desmoids were growing so fast, they would grow so much, that I would wake in the morning with burst pyjamas. I looked like I was pregnant to the side! It was very hard to walk as it was so heavy. Again, I had more mesh inserted and more of my pelvis scraped. The tumour had grown behind my pelvis and not just the right side of my abdomen, it moved over the right side too. Doctors were prepared this time and I started the antibiotics for infection in the mesh.
After the surgery, I was sent for radiotherapy again. I thought the treatment was aggravating my disease, but was told, my belly was just swelling from the treatment. I knew I was right and rang my surgeon to see me. At this stage, my surgeon began listening more to me as I was always right, when scans etc. would show no desmoids, I always knew as my body would be screaming at me!
I was readmitted and scans and tests were performed. Over the course of the next two weeks, the monsters were growing so fast, I was massive; my skin kept breaking at the pressure of them stretching it.
My surgeon was reluctant to operate again as at this stage I would need my full abdominal removed and in the end I had to beg him to do it as I couldn’t move, it was even in my skin, my belly button was so sore too! I had to use a wheelchair to get around. Eventually the surgery took place and it was without a doubt a hard surgery. I had to have plastic surgery to try and tidy my stomach up a bit. When I was got over the operation, the physio put me standing and immediately something not so funny happened, I started vomiting, and swelling, I was in agony. Another emergency surgery had to take place as my bowel became enstrangled.
After the surgery, I had to lie still in the bed for 7 weeks, there was very little of my pelvis left and it was not very strong. The surgeon found it difficult to complete the surgery as I had nothing to stick the mech too. It was hoped by not moving, that things would stick together. This was so difficult; I had an NG tube in, which I absolutely hate!
Eventually I was allowed out of bed, but only a few steps, or the wheelchair to get around. I was still in hospital the same old pain returned in my ribs and hip. They were back!! My surgeon said he would never like to open me again as it would be too dangerous, so I was sent for chemotherapy. This was difficult, I lost my hair etc., but I knew it wasn’t working. My bowel also started giving me trouble. My diet became very limited and if I ate anything I couldn’t digest, my bowel would twist and end up back in hospital, and worse still with the dreaded NG tube inserted.
After a year of chemo, I was no better. I was on a huge amount of opioids to try and keep the pain at bay.
Then my miracle happened, I got a new oncologist!! Mr. Gullo and he had studied rare cancers! He decided to treat it aggressively and I had my port inserted. I had chemo for 14 days on and 7 days off. I was so sick on it, but gradually I found I could stand straight, my pain started to lessen! Yippee. Then I could walk to the car without been in agony and my healing continued. After 18 months of chemo, my kidneys were rejecting the chemo and it had to be temporarily stopped and thankfully I have not had any issues since!
Today! My bowel and a massive hernia is my biggest problem, but I have learned to live with it, I am now back at work and living a normal life. Whatever that is!!
I am so thankful for all the people I met on the journey. The people who walked the walk with me. I would not change my past, as it has made who I am, I met people, many now with God, who formed and shaped me, who inspired and thought me so much. I love life, I love living and I am so grateful for each pain free day. The future is not mine to see, I can only live in the moment of today. Desmoids are monsters that I need to own, they are a part of who I am. Will they play up again, possibly, but if they do, I ll be ready, to fight, to win, and win I will, because I have God in the battle with me. I have a different appreciation for people who cannot walk, who cannot talk. I received good care and bad care, all of which was a lesson, from which I have learned how to treat all people with the respect that they deserve.