I am a very active person and so it was likely I had done something and not even realized. I was also preparing for my grade 8 Flute exam so also considered I had been practicing too much.
But by March the pain had not cleared up, odd for a pulled muscle I thought. I was going on a Biology Expedition to Honduras in the summer. We were going to be scuba diving, so to improve our fitness and practice using snorkels we started playing underwater hockey at a local pool. I found the resistance of the water was too much for what little strength I seemed to have in my right arm. By this time I was having real trouble sleeping, I tend to sleep on my side and if ever I rolled over I would wake up in agony. I began to think that this wasn't right. It took my Flute exam and thought maybe it will calm down now.
April then arrived, I went to give blood, something I had been doing regularly ever since I was 17 (I have since realized just how important this is, especially since I am O negative).
The watersports season started up again, so I was regularly Windsurfing, Canoeing, Kayaking and Sailing (yes it was painful but that wasn't going to stop me). My Duke of Edinburgh Award took me away for a week at Easter working as a Waitress on the Ffestiniog railway. By the time I came back I knew I would go straight to my GP, there must be an explanation for my discomfort!
So I went to my GP, I explained my problems and my concerns since my A level exams were approaching and I couldn't afford to be in pain, it hurt to write as well. He diagnosed a repetitive strain injury from a using a computer mouse too much, I was not convinced since I have a laptop. He said take paracetamol or ibuprofen for the pain if it doesn't clear up come back.
In May just before my exams I was beginning to hold my arm all the time, even though it did nothing to help the pain. I felt like no-one understood how sore it was. We went on holiday as a family to Sicily the week before my exams started, it was generally achy the whole time we were there and specifically it was worse at night, I had decided after a few days that I would return to my GP when we got home, since I hadn't been using my arm all holiday and it was still hurting. I was resorting to strapping my arm by my side at night to stop it moving in my sleep, since when it did the pain woke me up. Paracetamol and Ibuprofen were just not strong enough.
When I went to see my GP he referred me for physiotherapy, I went for 10 sessions jiggling them around my A level examinations, dosed up continually on painkillers and ice packs, although I was offered nothing stronger. I was treated with exercises, acupuncture and ultrasound. These sessions were not showing any signs of improvement, if anything it was getting worse. But I was advised such a shoulder injury could take a year or more to heal and so to just be patient. Unfortunately I didn't seek a second opinion from another GP in the surgery I thought I was better off returning to one for consistency.
At the end of my exams I went to Alton Towers with friends, getting out of the swimming pool I used my right arm to push on the side. This was a bad idea, it gave way, I heard a cracking sound and I spent the next half an hour unable to grip anything in excruciating pain and being given gas and air and ice by their first aid team. They wanted to send me to A&E but unfortunately I did not attend, I was seeing my physio the next day and thought I would seek her advice.
With my looming Honduras trip she suggested we went down the cortisone injection route and so I had an appointment with my GP to give me an anti-inflammatory injection. This was expected to help me on my 2 week expedition backpacking and scuba diving to keep me pain free for the trip. I was happy to try anything! The trip was great but I still had to put up with constant pain, very little sleep and carrying and lifting heavy items (with difficultly), again there were several occasions where I was sure I heard a cracking noise and was suddenly in a lot of pain.
A follow up injection came on my return to the UK, more painful second time round. I was advised against going to see a shoulder specialist because I was about to move to the other end of the country to go to University and they thought it was better I saw somebody there. I spent the rest of the summer working in a high street store, on the lake assisting with watersports courses and seeing friends. At the start of September I went on a short holiday in Newquay camping to celebrate my 19th Birthday.
All the time my arm was hurting but I had all but given up complaining because there didn't seem to be anything anyone could do. Before I went to University I ended up seeing a shoulder specialist privately to see if they could do anything. Going from what my GP gave him he continued with similar treatment a course of 3 of his own cortisone injections before he would take any other action. No scans were offered despite my obvious discomfort, no-one had noticed any swelling and truthfully I am not sure if there was any. They kept saying muscles were the problem but the pain felt much deeper than that, but I am not qualified so just went along with what I was told. He told me worst case scenario I would have to have a bit of my shoulder blade shaved off to allow my muscles to move more freely; it could be catching.
I had the first of these magic injections and packed my things and left for Durham University to study Biology. Day to day tasks were ridiculously difficult I could no longer reach my arm above my head so when I was doing my hair I used to have to tip my head upside down and prop my arm up on things to use it. Writing in lectures was a challenge! I was very nervous in groups in case I got bumped when my arm would become very painful. Difficult not to in freshers week!
I went to Leeds for the weekend a couple of weeks into term and while I was waiting for the train, my shoulder 'popped' very loudly and I could hardly stand up from the pain, I wasn't even doing anything strenuous, I decided something was terribly wrong. I looked at my shoulder and saw a large lump, I could hardly move it and thought maybe it was dislocated, so decided that as soon as I got to Leeds I would go to A&E.
After a 5 hour wait they agreed that it could be dislocated and so sent me for an x-ray, I had also explained the history and they were prepared to listen to me. I never could have predicted the steps that followed. The x-ray came back and they said well it's not dislocated, but there is calcification inside the shoulder that we don't really understand, we have called down the Orthopedic registrar to look at them. After explaining the history to him he said there were a few hairline humeral fractures and some calcification, he said he would like to do some more scans and could I come back on Monday when the machine would be working.
My dad came up to join me for the Monday. They decided to refer me straight to the Royal Orthopedic Hospital in Birmingham and have the scans done there, but the Registrar did agree to see me and my dad to answer any questions as best he could. He told me to expect this year to be a bit of a 'right off', he obviously had a very strong inkling as to what was wrong and thankfully he was spot on! I was packaged back on the train with a sling and a sick note for a humeral fracture and struggled on at University for another week when my appointment came through for the tests. I still had absolutely no idea what the problem might be. I was told the name of my consultant in advance and my parents looked him up on the internet, this set them panicking and they used to ring me up sounding very concerned, I couldn't understand it I was only go for a few tests, they would find out what was wrong and I would be fixed.
Bone scan, CT scan. MRI scan and X-rays were taken. My consultant then told me that he was 99.9% certain that I had Osteosarcoma, I looked at him blankly and he said it is a type of Bone Cancer. The C word was out and there it was I had a life threatening illness, I couldn't understand it, that happens to old people, poorly people. But not me, I only had a sore arm, how could that be cancer? I didn't even know you could get cancer in the bone!
I was about to begin a very steep learning curve about hospitals and cancer treatment. A biopsy was done to confirm what they already knew and I prepared as best I could to loose a year of my life and a lot of function in my right arm, never being able to lift it above waist height (I am right handed). I was told I would never be able to do some of the watersports I loved so much again; it would be physically impossible. It was a lot to take in. I returned to University to pack up my things and move back home. I had only been there 3 weeks but had made so many new friends and felt really settled, it was hard, but I knew it would be there waiting for me when I was better.
The chemotherapy was a shock to the system to say the least, I physically could not walk after my first dose, they had to get a wheelchair to get me to the car and I felt so nauseous I didn't think I would even make the 30minute journey home without being sick. But fortunately the next dose wasn't half as bad, they had my sickness relatively under control and I knew what to expect. My hair falling out wasn't hard for me, by that time doing my hair was such a hassle so I thought great one less thing to worry about. I had a wig but tended to just wear hats and scarves, I didn't find the wig very comfortable. Fertility was slightly more of a concern, but I decided it wasn't worth delaying my treatment to harvest any eggs, so I decided I would take a chance on it.
The treatment involved 6, 5 week cycles of chemotherapy the standard treatment for Osteosarcoma. (1 week in hospital followed by 2 weeks at home recuperating and then 2 weeks back to back before the cycle started again.) I never managed to spend my weeks off treatment at home because I always managed to pick up some kind of infection and end up poorly in hospital. I was prepared to put up with all of this though because as soon as I started the chemo the 9 months of pain stopped overnight, I came off my Morphine and knew instantly that this was what I needed to make me better. I had one particularly bad infection just after Christmas and spent New Year in a side-room on my own.
The ward I had all my treatment on (The Young Persons Unit at the Queen Elizabeth Hospital in Birmingham) was superb, I couldn't have asked for a better team to have looking after me. You get to know everyone so well and there so relaxed about everything it doesn't really seem like a hospital at all. You are also around people with similar conditions to you and of your age which makes you feel a lot less isolated. I made some very firm friends on that ward with the nursing staff, other patients and their families. Another bad infection followed and delayed my operation by a week. The other thing I suffered really badly from was mouth ulcers I physically couldn't talk or eat some weeks because my mouth was so ulcerated until almost at the end of treatment one doctor prescribed me a cream (acyclovir) that worked wonders and I managed to eat a wider variety of foods than soup through a straw, custard and ice cream. Ice pops were also great because you could hold them on the sore bits and numb them.
Nose bleeds were the other thing that seemed to haunt me. But strangely my body seemed to get used to the drugs and despite the ulcers and nosebleeds I began to feel much better towards the end of my chemo. The surgery went well but the lack of a completely clear margin made them decide to follow up with a course of 6 weeks of radiotherapy. I found this harder than I expected it was a real drag traveling to my appointment everyday (I drove myself) and after the treatment had finished I continued to get a bad skin reaction and still have a bad scar under my armpit, although it is all healed now. This was frustrating, I expected to feel better the day I finished treatment.
But now, 8 months of Chemotherapy, 6 weeks of Radiotherapy and an Endoprosthetic Humeral replacement operation later I am still here and getting on with my life. I gave a talk at the BCRT conference as delays in diagnosis is a subject that is very close to my heart, I am horrified at the number of people I have met through my treatment who have a similar story about how long it took them to be diagnosed. I am sure it is one reason why this cancer is so difficult to treat; it simply isn't found early enough. I was one of the lucky ones but for so many this is not so.
My treatment course finished on the 24th August 2007. I had a big party to celebrate and it coincided with my 20th birthday. I thankfully felt well enough to return to Durham for the start of the year and have started my course again (not many people can say they have had 2 undergraduate freshers weeks!).
I have now been here nearly 2 months and loving every minute of it. The goal of making it back to university this year gave me something to aim towards whilst going through my treatment and it has lived up to all my expectations and more. I still have to have weekly rehabilitation to try and improved strength and movement in my arm since the radiotherapy undoes all the hard work I had been doing since my surgery in January. I find note taking tiring and it makes my arm swell, but I am adapting and finding ways around it. I have still managed to stay involved with my much loved watersports by joining both the canoeing club (although I am leaving this for a little while) and coxing for rowing. I have joined the orchestra playing the Flute again (slightly different playing position but pretty good). I am able to drive a normal car; a technique just had to be learned. Breaststroke swimming is ok too, and really good exercise. I have joined the hill walking society as well; it gives me an escape to the countryside.
I'm really enjoying living life to the full and feeling normal again. This year has made me take a lot less things for granted that I think we are all guilty of in everyday life. I have really appreciated the support of my family and friends they made this journey at lot easier. It's great doing things people of my age tend to do rather than being treated as a patient all the time.
I still have 6 monthly check ups to keep an eye on things but I'm not nervous, I know I'm better, if it comes back I know that I will just beat it again. Cancer has just become part of the story of who I am but it doesn't have to take over unless you let it.