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I would like to share my daughter Billie's story who passed away 19th March 2012 aged 16.
Billie was a very quiet, gentle young lady who strived to achieve so much despite suffering with osteosarcoma.
Billie was diagnosed in 2007 at the age of 11, she was in her first year of senior school. She went through gruelling chemotherapy to try and cure her illness. When she lost her hair she would often get upset but after a while it seemed like losing her hair was not that important. She would prefer to show her bald head rather than wear a hat. Having no hair actually suited Billie who previously had a mass of thick long hair.
In March 2008 it was decided that Billie would need to have her right hip and leg amputated to try and cure her of this dreadful illness and to save her life. The operation was carried out by Mr Grimer at The Royal Orthopaedic Hospital in Birmingham. At the time, this was a huge struggle for Billie and if she had allowed it to, it could have destroyed her life. Billie was not the kind of person who would allow this to happen. Instead she did what she always did best and wore the biggest smile, despite the horrific pain she was suffering.
After months of rehabilitation and physiotherapy Billie went between a wheelchair and wearing a prosthetic leg (using crutches). Due to the amputation she had a huge, reinforced hip part which made it extremely hard to walk far as this took a great amount of effort. Despite all of this, Billie returned to school. Billie was truly a special young lady and I'm not being bias when I say this because I'm her father, her genuine warmth touched all the teachers, pupils and everyone else who came into contact with her.
After a routine MRI scan in December 2010, our world came crashing down again when we were told that the tumour had returned. Billie took this news with her usual spirit and her huge infectious smile.
She endured more chemotherapy and went through hair loss again but she remained strong and felt it was worth it, even second time around, if this would make her better again.
I couldn't believe this was happening to my daughter again who had suffered more than I could ever describe or tell you about. As Billie was preparing herself for another battle, I tried to remain optimistic. Deep down I knew this was possibly a battle she couldn't win and I felt incredibly guilty thinking this especially when Billie had such high hopes.
However Billie's battle and our worst fears became a reality when Billie was told that her cancer was terminal. She was totally devastated but again, she hid behind her infectious smile and thought only of other people.
I now wonder if this was her coping mechanism and I truly believe it was. Billie was definitely an inspiration to me and everyone who had the privilege to meet her.
Despite her grim diagnosis, Billie continued to live her life. She gained 5 GCSE's and accomplished her dream to attend her school prom in July 2011. She looked absolutely stunning and very grown up and she danced the night away in her wheelchair surrounded by teachers and friends. Billie never let anything or anyone get in her way of doing what she wanted to do and she knew how to party!
Billie's illness really started to take over and she started to look very frail but her zest for life never left her. Billie was awarded a 'West Midlands police award' for recognition of her courage and determination throughout her illness. Then, in December 2011, she was presented with an outstanding individual award as part of a new community awards scheme in south Birmingham.
However Billie's illness took a toll on her and after endless suffering and pain Billie lost her spark and that infectious smile and passed away on 19th March 2012.
It feels like half of me has died along with Billie and her loss has left her brothers and sisters heartbroken and a huge void in the lives of everyone who ever came into contact with her.
A true measure of the sort of person Billie was showed as she planned her own funeral. Those attending wore her favourite colours pink and purple. Her vivacious personality and humour showed through the hyme 'Oh happy day' that she had chosen to be played in church. Best of all her favourite sweets 'strawberry laces' were given out to everyone… a poignant, final touch from our beautiful Billie.
All My Love Billie
(Michael Fulford, Billie's father)
In September 2009, 4 year-old Charlotte came home and complained of a sore ankle. We had just purchased a trampoline for her birthday and thought it was due to a twisted ankle, but it persisted and awoke her in the night. After visiting the GP we were told it was probably a infection in the joint with an appointment for over a months time to see a Pediatrician at Warrington Hospital.
Call it a mothers instinct but something was really worrying me about Charlotte's ankle and I took her to A&E, initially we were told it was a small break but luckily an Orthopedic Consultant looked at the x-ray and immediately sent her for a MRI scan. Later that day we were told that the Consultant strongly suspected Charlotte had Ewing's Sarcoma - a very aggressive and extremely rare form of bone cancer only really seen in older, adolescent males. It was a huge shock and the hardest thing I had to do was face Charlotte again, in the play room of the hospital after being told and knowing what she would have to face. She had just started school two weeks previous and looked the picture of health it was hard to believe she had cancer.
We were sent to Birmingham Orthopedic Hospital for a biopsy and waited for the result, which confirmed that Charlotte did have Ewing's of the left tibia. We were sent to Alder Hey children's hospital and had full range of scans and were told initially that the cancer was localized, only to be told two weeks later that the bone marrow which they had taken showed Ewing cancer cells. This was a huge blow and the Oncologist Consultants contacted the clinical trial doctors for advice for Charlotte's treatment as it was very unusual to have the cancer spread to the bone marrow and not to lungs or other bones first. It was decided after the chemo and surgery Charlotte would have a stem cell transplant.
Charlotte was an inspiration to all on the children's oncology ward showing a compassion and maturity well beyond her years. She accepted all the treatment and never once complained why me, we had to draw our strength from her. We practically lived at the hospital which was hard on our two boys Oliver and Jacob who were 7 and 2 at the time and only for the support of friends and family we got through.
I will always remember my sons 8th birthday January 2010 when I was told after long discussions over scans the surgeon and oncologists decided to amputate Charlotte`s left leg below the knee. I was on my own as Darren had taken Oliver out for the day for his birthday and it was hard to take in, my first thought was how I would tell Charlotte she was such an active sporty 4 year old. But again Charlotte took the news with her usual complete trust of the nurses and doctors, I will always remember at the time Heather Mills was ice skating on Dancing On Ice and Charlotte watched it saying that will be me and I believed it would.
So in March 2010 Charlotte underwent a below Knee amputation, followed 2 weeks later by a stem cell transplant, it was so hard seeing her in so much pain and so sick, but with her usual resilience she got stronger and we left the hospital in April 2010 with the long road of physiotherapy and learning to walk with a prosthetic in front of us. Charlotte was so weak but determined to walk and through the brilliant work of the Physiotherapists and the Wirral Limb Center she did. She restarted school in reception in September 2010 and we had a new baby brother for Charlotte, Henry in April 2011. Life was moving on and Charlotte was doing really well and as a mother I initially was terrified when we left the hospital scared of the cancer coming back and feeling very alone. But through great family, friends and a good GP we are in March 2013 three years in remission.
The worry never goes away but we try to concentrate on the positives we fund raise in an attempt to give Charlotte the best long-term prosthetic care so she can fulfill her ambitions which are riding high after the Para Olympic Games. Charlotte continues to be an inspiration to all she meets determined to be a doctor/nurse and help and inspire ren in the future.
I was first diagnosed with cancer in 1985, six months after leaving school. Although I had had pains in my left leg and knee for around two years, the issue had never been diagnosed. Even after many visits to my local GP I was repeatedly sent away with inconclusive solutions, ranging from growing pains to 'hypochondria'. I eventually did stop going to the doctors. Strangely enough, I do not blame any medical people at all for what is now to commonly referred to as negligence, because even now the disease is not well known. In those days medical 'claim and blame's were not common and even if they had of been, monetary gain would only have taken funds out of the pot and prevented someone else being treated. My final diagnosis occurred after my leg broke just above the knee whilst walking up a hill to college. I was taken to casualty by my mother. I was told to sit down after an X –Ray and I was informed that I had a tumour inside and surrounding the bone. Rather than worry as you should do about death, disability and much more, I was actually more worried about losing my well groomed hair due to the Chemotherapy mentioned. A crazy point of view I know, but now only in later years I realise it was a very good way of surviving severe mental trauma.
I then had my first visit to The Royal Orthopaedic Hospital where for the first time, I met Mr Robert Grimer (now Professor) and his Mentor Mr Sneath. Both Mr Sneath and Mr Grimer at that time had made some early and amazing advances in saving the limbs of people who had cancer that would otherwise have resulted in an amputation. I later found out reason I had been referred there – to save my leg. Less than a year or even months before, surgeons would have amputated the entire leg, close to the hip, without question. After a small and surprisingly painful `Biopsy` to remove a small part of the Tumour, the cancer was diagnosed as Osteosarcoma. I was immediately referred to The Christie Hospital Manchester, to receive six vigorous courses of Chemotherapy. Of course I was not aware of the effects of Chemotherapy in those days. Cancer was the big `C` and often, like Leprosy, ignored. To say I was sickly following the treatment is probably a massive understatement. Although I am aware people still receive deadly and sickening doses of Chemo now it is true in those days that the drugs were more raw, stronger and unproven. My memory is a little shady owing to the fact that I have blocked-out most of the trauma, but I do remember I received three days of drugs. The drugs were constant day and night with saline in between and a few blood transfusions to bring my body back to life along the way. I was sick nonstop and that is something I do not think I will ever forget. The only relief was occasional sleep and the unbelievably kind Nurses and Doctors. I am ashamed to say I cannot properly remember all the kind people who helped me then and continued to in following years; however there are two people who are still there and still working hard for Children as ill as I was. Mr Gattamaneni Rao who is a leading and renowned oncologist and Pauline Sutherland, Sister and guru of the children’s ward, as well as much more. Pauline runs a charity with her husband called `Childflight` purely to provide holidays for terminally ill and/or very ill children.
I continued to undergo the most unpleasant medical treatment I would ever want to experience, until my sixth and final treatment. Just before my treatment was due I unexpectedly collapsed in the centre of BlackBurn where I was out shopping with my mother. Yet again my mother (the hero) rushed me to Christies Hospital where I found out my Kidneys had stopped working. I spent two weeks in and out of consciousness, drip fed and cared for by unbelievable Nurses and Doctors. My Chemo treatment was cut short then apart from the essential less potent drugs. I continued and still do continue to visit the children’s ward of Christies for annual checks (although sorry, I have skipped plenty). I will always be eternally grateful for their help and care and I will never be able to express that in words.
Whilst I was receiving my first few treatments at Christies, the team back at the Royal Orthopaedic Hospital (ROH) were working incredibly hard constructing a replacement metal prosthesis. Many people – medical professionals included - assume that this is an artificial leg, it is not. It is a titanium engineered replacement to bone and in my case, knee- joint (more common now but not so much then and still not of this quality of engineering). This joint was fitted after my fourth treatment of Chemotherapy, when the team at ROH deduced the Osteo Sarcoma was beginning to shrink.
The post op feelings were pain free which I was surprised at and although I was offered pain killing drugs, morphine and such, I never sampled any. I only realised later in life how lucky I had been. My whole leg had been cut from the hip to below the knee. I had quite a war wound. All this time and for years after I was either purposely or dumbly oblivious to how lucky I was to survive and to have had the chance of treatment. My parents on the other hand, were not so lucky. They had to endure long days and nights of watching me ill and hoping that I would be one of the 30% survival statistics. I will always remember talking to a Doctor a few years later at my local hospital after I had broke my foot. He asked about previous illness and I confirmed that I had had Cancer - Osteosarcoma. The Doctor replied that I must be wrong because I would not be alive if I had!
I went on strong and I recovered from the cancer. The chemotherapy caused a real challenge to my stamina for over 12 months after treatment however a year later, my energy levels increased and I was back to normal. I continued to live a full and successful life and although I am unable to say whether my life would have been any better or any worse had I not have been ill at sixteen, it has made me appreciate my life, what I do have left and the people around me. Did I become a better person? Well it certainly did not make me a worse one! If I could go back and change the course of my life and eradicate the illness, I genuinely wouldn’t. So to prove to all those children out there with Osteosarcoma that prosperous and `normal` paths of life are neither restricted nor impossible, here is my life chronology:
1986 - Returned to work to complete my time serving as a HGV mechanic.
1988 - Moved from the vehicle workshop to running the service side of things and quickly adapted to admin, sales and management that I thought was beyond me.
1988 - Received the all clear from the hospital and got told I had healthy Kidneys! Event after I was informed that I would likely need dialisis and probably a Kidney transplant, my Kidneys returned to full functionality!
1990 – Worked for Renault as a salesman and learnt a great deal of new skills. Absolutely fabulous fun at only 20 years of age covering the whole of the NW of England with a Company car and my own office! I was very lucky.
1992 – I actually made the step to join my father in a part time business he started as the 1992 recession was hitting hard. The business became a relatively good success and still was until I sold it in 2007 after purchasing my father’s share in 1997.
1993 – Purchased my first house and became the nominated `Party Host` being the first of my friends to have independence in this way!
1998 – Purchased premises for my current and future ventures which still serves me well now.
1999 – I started a new business which is still one of my main companies and I have expanded this in its modest capacity to National and International status (www.tunit.com).
2000 - Travelled Australia for 5 weeks and Scuba Dived for the first time ever and also on the Great Barrier Reef.
2001 – Started a new design business handling web, graphic, filming and much more (www.drivendesign.com).
2006 - Began a new business with partners to offer an alternative fuel of natural gas to run Trucks on. Unfortunately due to a collapse of resources and parting of ways, the company went into demise 12-months later. However the plus was I became a temporary TV personality (only the national news really!) and I had an introduction to what can really go wrong in business!
2009 – I began a media business providing advertising screens for retails outlets, shopping centre’s and advertising agencies (www.mox.com).
2011 – I met the love of my life. Surprising, incredible and something I think I had believed not to be possible . When I met Jo she helped and stuck with me through a lot of times making her not only the love of my life but in addition, a saint. Thanks Jo, I hope you will still love me when we are old, grey and watching our grandchildren grow.
2012 – Myself and Jo started up the Bromley Foundation to help raise vital funds for the ROH in Birmingham
Now I know I have listed mostly career milestones because even though they are not the most important happenings in life, they are a measure of achievement. Other personal achievements are to walk again, run again, dance, body build, scuba dive, cycle and much more.
Now I am not saying that living with a history of Osteosarcoma has been easy. I have benefited greatly from my operations carried out by ROH, however I stopped counting the number of operations that I have had on my leg quite a while ago – when I hit 20 in fact. Some have been small operations, some have been large and a few, major; all of which (bar one) have been carried out by Mr Robert Grimer. In most cases, replacement components for my prosthesis were needed owing to my own interest in sports and excessive activities. In addition, at twenty-eight I also suffered from heart failure. Unbeknown to me the chemotherapy left underlying damage to my heart as it does many. I was placed on the heart transplant list and was due for a heart transplant within 18-months.
Thereon my business came second and I concentrated on healthy living, alternative therapies and spending quality time with friends and loved ones. Consequently, I made a recovery and within 12-months I was removed from the transplant list. With each operation, I have also suffered infections and from June 2009 to December 2010 I was extremely ill following complications after receiving an insect bite on my leg. 18-months of being both house and bed bound followed and mental illness - something that I believe happened to other and ashamedly 'weaker people' - now affected me. I was unable to sleep for a whole 12-months; I felt completely lost and totally out of control. In addition the long-term antibiotics and insomnia bought back my heart failure. I have since been recommended to have a pace maker fitted which at present, I have refused.
I have improved my health from walking ½ mile to 5 miles and I work again all day 5 days+ per week – something that would have been impossible before. It was only through the help and support of Jo, my brother Phil and his wife Nicola and the aftercare, help and support of the team from ROH that I have got through it all. I am no superman but I am a proof that the ROH works, and that every bit of care, research and hard work by all the people involved is worth it.
I have travelled the world and will continue to do so. I have achieved moderately but I will achieve greatly. I am in love now and always will be. Some children have experienced worse than me, some better and others who are less fortunate are no longer here to tell their story. The most important thing however is that despite the horrors children with Osteosarcoma have endured, each child has been given hope and an extended lease of life, however long or short that may be and with the ongoing research and development works at the ROH, the survival rate continues to increase and more and more children are able to tell their tale.
I owe my life to the people at ROH and I would like to take this opportunity to relay my heartfelt appreciation to every nurse, care worker, helper, cleaner, administrator, therapist, receptionist, doctor, surgeon and volunteer that has been there throughout to offer me and many others like me, their care and support. Most of all though I must repeatedly thank Mr Robert Grimer, an amazing surgeon and specialist in his field, who has dedicated many hours and sometimes days at time, operating on me, caring for me and overseeing my recovery.
Lastly, to my parents; they have gone through every step with me. To my mother, bless her I mean that for the pure saint she was. She lost her life against Cancer when I was 26. Despite the Cancer being the killer, her strength and faith and had been beaten by caring for me throughout my illness. To my father, who had a serious stroke, unable to cope with my illness and the loss of his beloved wife, he continues to support me irrespective of his own disabilities, throughout each and every one of my operations.
Thank you for listening to my story.
Hi, my name is Nancy and I am a 29 year survivor of Osteosarcoma. Here is my story:
In 1984 I was a typical 15 year old girl more concerned with my boyfriend, my friends, and my hair. Even before my illness I hated gym class, so when it was announced that for the next six weeks we were expected to study swimming I thought it was the end of my world. I wasn't about to go through the rest of my day with my hair less than perfect. So naturally I did what any teenager would do...I made up every excuse I could think of to get out of it. After complaining about my eyes, my ears, my skin, and my sinuses, I told my mom that my knee hurt. It ached a little, but nothing that I would have normally complained about.
A trip to the emergency room showed that I had fluid on the knee. After further review, the radiologist found that it was something much more serious. From that day on, for the next two years, my life was a blur of hospitals, doctors, and surgeries.
I am not going to lie and say that any of this was easy. It was one of the hardest things I ever had to go through. Luckily, I was fortunate enough to have a strong support system which included my family, my friends, and fellow cancer patients. However, not everyone was so positive. There were people who thought that this was the end of my 'normal' life. They did not realize that it was only the beginning of a new one. It became my mission to prove these people wrong.
When I returned to school, due to my amputation, there were some teachers who coddled me. I had others who still lectured me about my grades and wrote me up when I was misbehaved. These were the teachers I respected most, even though I was not going to tell them that! I managed to graduate with my class regardless of missing so much school.
Since high school, I went away to college, broke hearts and had my heart broken, and had good jobs and bad. I did everything that anyone who didn't have this disease would do. I've found myself in situations which were not ideal, but that had nothing to do with my cancer, but to poor life choices on my part.
Today, I am a happy, healthy 45 year old woman dealing with every day problems which have nothing to do with my illness.
Because of my amputation, I still deal with osteosarcoma on a day to day basis. These are the things I've learned that help me deal with that.
1) It's OK to ask for help
2) Crying is not a weakness
3) Admitting that you are having a hard time does not mean that you are give up
4) Never let your illness define you
5) A positive attitude and a sense of humor can get you through anything
The other day a good friend said to me "I always forget you have one leg" - I think that is the best compliment I ever received!
His story began on October 30th 2012. Nicholas was diagnosed after a couple weeks of sports related, as well as normal rough and tumble boy injuries. For a couple weeks he complained about pain in his upper knee area. I told him that is didn't surprise me after watching he had his brothers flinging themselves up our stair case one day trying to see who could jump the highest. After a couple weeks of ibuprofen and ice, one morning he woke up and the swelling was beyond what was considered "normal". In the pit of my stomach I knew this was cancer.
Reluctantly I made the doctor's appointment, where there was an x-ray given. By 5:00 that evening I was phoned at work and told that I needed to get him in for an MRI. This was the first time I had ever heard the word osteosarcoma. In that call, the two phrases long road and leg removal were used. I walked away from work that day knowing I wouldn't be back. I was VERY aware our lives were going to be changing very drastically in the next few months. My husband and I went home where we had a family meeting to break the news we had just been given to the boys. We cried together but decided we would go through this as positively as we could. We decided at that point we would live day by day, not worrying what the future may bring.
The next day the MRI was scheduled where the diagnosis of osteosarcoma was confirmed, later finding that it had metastasized to Nick's lungs. He was placed on a 29 week chemo plan with leg salvage surgery taking place on February 13th, 2013. Nicholas was thrown into an unfamiliar world of doctors, nurses, testing, surgeries, chemotherapy, nausea, throwing up, mucositis, mouth sores, major weight loss, among several other odd effects that chemo causes. Nicholas was placed on a feeding tube after losing 20% of his body weight. Initially the feeding tube was presented as a threat if he wouldn't eat. In my mind I would always wonder what drug these people were on since there is no human that would want to eat with the condition he was in. The feeding tube was finally introduced, where I watched my son become the bravest person I have ever met. The feeding tube has been a huge blessing that I believe should be introduced in the beginning of EVERY treatment plan to aid patients as they struggle through these difficult times.
We continue to stand behind Nicholas as he fights his battle, moving into the lung surgery phase of his treatment. We live day by day enjoying every minute we have together, nothing more nothing less. With the grace of God and a whole army of thought and prayer warriors behind us, we continue to fight this nasty battle.
My name is Wendy and I am a survivor of osteosarcoma. I was a normal, healthy 23-year-old who stayed active by taking walks and working out from time to time. I hung out with friends, went clubbing, worked full-time in an office, and did something fun once a year like going on a cruise or to a theme park.
In March of 2011 I had excruciating pain in my left leg one day. I limped around and thought maybe I had slept wrong or something. For the next couple of months I noticed my leg would ache sometimes and I wasn't sure why. I began taking Ibuprofen almost daily and thought I should finally see an orthopedic doctor. I thought it was just going to be tendonitis or something minor, but I was wrong.
The doctor noticed my left calf muscle was larger than the right one and he felt it and said there was something in there. His guess was either a hematoma or, at the absolute worst, osteosarcoma. I had an MRI a few days later, and the doctor called me up eight hours after the MRI and told me "the mass had a funny look to it" and he was sending me to an oncology specialist. The word "mass" caught me off guard. I just kept calm and decided that I wasn't going to worry about it...I was just going to let my family, friends, and co-workers know so they would pray for me.
The oncology specialist reviewed my MRI films and told me it was cancer, possibly osteosarcoma or Ewing's sarcoma. He did a biopsy the next week and confirmed it was osteosarcoma, but sent the biopsy slides off, then they were sent to M.D. Anderson. While I was waiting for the final biopsy report to come in, I celebrated my 24th birthday.
I went to two orthopedic doctors, then to two different oncologists. They Referred me to a local Children's Hospital where my parents and I met with a team of doctors, nurses, a social worker, and a psychologist. The next few days I had all my scans re-done, since it had almost been a month since the previous scans, and the new ones showed that the tumor had grown another 2-3 cm. It was a total of four inches long in my left calf muscle. The doctor said there was also a small 8 mm nodule in my left lung, though he wasn't sure if it was anything to worry about. He said he was going to keep an eye on it during my treatment. After my scans were re-done, I had surgery to insert my port and started chemo all in the same day.
I was on three different chemos at first: Adriamycin, Cisplatin, and Methotrexate. After a few months of being on those chemos, I had my scans re-done and the nodule in my lungs was unchanged. It was week 11 of treatment...surgery time. Since the nodule was still there, the doctor feared it was cancer and said most places wouldn't be concerned since it was under a centimeter in size, but he wanted it removed. I had a thoracotomy of my left lung on September 19, 2011. I had three small lumps removed and two of them were benign, but the one they suspected turned out to be cancerous. I had a chest tube for a couple of days and spent that time in the PICU.
Nine days after the thoracotomy, I had my limb salvage surgery on my left leg. In pre-op, I was told the most recent MRI scans showed the tumor involved two out of three of my major blood vessels from the knee down. They told me they were most likely removing both of those blood vessels which would leave me with the one, and they didn't think that'd be sufficient blood flow for my leg and foot. I signed a waiver for them to amputate my leg if necessary.
I was expecting to have no leg when I woke up, but it was still there...and hurting really bad! They ended up removing most of my tibia and replacing it with cadaver bone. There are metal brackets on either side of the bone that are screwed into what is left of my tibia to hold the cadaver bone in place. Fortunately, they did not have to do a knee replacement, but they have the metal right under my knee. They tested the tumor death rate after my surgery and I was expecting it to be significant--at least over 90%. It was only 20% dead when they removed it, which meant they were going to add 2 more chemos to my regimen and I was going to have to do more treatments.
A month or so after my limb salvage surgery I started chemo again. The new chemos that were added were Etoposide and Ifosfamide. I spent 2-6 days in the hospital per chemo treatment, depending on what I was doing. I ended up having an exploratory thoracotomy on my right lung on 11-30-11, just two months after my other major surgeries. The surgeon found no lumps, thankfully.
I continued chemo treatments for the next several months and finally ended in July of 2012 after multiple blood and platelet transfusions, just over 20 treatments total, and a combined total of four months spent in the hospital. They assured me that I wouldn't be working at all through the horrible chemo treatments, but I managed to work a total of 320 hours throughout that year which is a total of two months of work time. I was on a few different nausea medications during treatments and only got sick a few times throughout the year. I ended up gaining 30 pounds during the year from the Decadron (Prednasone family steroid) and from being laid up for 10 months in a bed or recliner with very little exercise due to my leg surgery. I was taking close to 16 pills a day and absolutely hated it.
I handled the first six months of treatment pretty well - I was being as strong as possible and stayed positive. I had God, my family, and my friends. I was in a relationship also, and my partner helped me so much. It was long distance, so it was hard. As time progressed it was harder to be the cheerful, silly, upbeat person that I was and I began feeling depressed. I didn't want to really talk to anyone, not even my partner. I really did handle everything well as I went through the treatments and surgeries, but you get to a point towards the end where you just want it to be over. I broke down a lot with my parents and found myself extremely lonely in the hospital when they would leave or when my partner would leave after spending the weekend with me there. It was very lonely spending week days in the hospital since everyone had to work, but most of my treatments were during the weekend. I did my best to use my faith and humor to cope with everything that was going on, but I had my bad days. My mood and lack of communication lost me my relationship with my partner, though there were more factors involved. My true friends stuck by my side, and my family was always there for me through the good days and the bad. I was extremely blessed to have the love of all of those people through my horrible year.
I was able to use a walker right after surgery, but I had to start out small with weight bearing exercise and eventually worked my way up to full weight bearing after several months of physical therapy. About a year after my surgery, I was finally able to walk on my own, something I never thought I'd be able to do again. I was able to walk around my office and home, but I couldn't go too far.
I have experienced a lot of pain since my biopsy, but mainly after my limb salvage surgery. My knee and ankle are the two key areas that hurt. I think the muscles, tendons, blood vessels, nerves, and everything else affected by the limb salvage surgery are trying to make up for what was removed. I have been using a shower chair every day since my limb salvage surgery - I still don't trust myself enough to stand in the shower on my own.
I have been cancer-free for six months now and get CT scans of my lungs and left leg every three months. I began working full-time about a month after I finished chemo, and I had a really hard time mentally adjusting to the real world. I found myself feeling very irritable, unable to focus, depressed, and angry. My psychologist told me I had "adjustment disorder." I never knew that existed, but it made sense. Slowly, I have been feeling better mentally. I still hurt every day physically though.
My pain is not as bad as it was after surgery or while on chemo, but it is still constant and bad. I was taking three 20 mg Oxycontin/day for several months after surgery until I finished chemo. Once I was done with chemo, I immediately weened down to one 20 mg Oxycontin/day thinking that my pain would calm down some. Since I have been able to walk on my own, I have taken my pain pill and four Ibuprofen every morning and by 1 or 2 pm I take four more Ibuprofen. My leg swells up every day (mainly my ankle) since I only have the one blood vessel. I'm about to see a pain management specialist to see what other options I have besides medicine--maybe a tens unit or nerve block. I'll try anything at this point.
Other than the pain in my leg and my physical changes, (scars, stretch marks, weight gain, etc) I'd say my life is mostly back to "normal," though I don't think you ever really have a normal after something like this happens to you. I work full-time, hang out with friends from time to time, and sleep. I still feel tired, mainly in the mornings. I wake up feeling like I have way too much to do and not enough energy, but I just make myself get up and go to work, then I start to feel better.
I feel great that I'm able to walk on my own again, but it is at the cost of hurting, so I don't go too far. I have been trying to exercise more, but it has been hard just to go for a simple walk...anything over 1/2 a mile and I'm ready to die. I'm eating pretty good for the most part and working on losing weight. I lost all of the water weight from the fluids I was on during chemo and my face has thinned out. My short, spikey hair is back and I love it. I have eyebrows again.
I have gone swimming once since surgery...it was very different. I can't swim very well at all anymore; I barely doggy paddle. I definitely can't jump in a pool, or jump at all for that matter. I'm unable to tip toe around too. All those muscles are gone. I have been able to ride a recumbent style stationary bike in therapy and look forward to the day where I can ride a real bike again.
My sister had a baby girl a month and a half after my limb salvage surgery, and I was unable to stand and hold her or walk around with her until she turned 9 months old. It was an amazing feeling being able to carry her in my arms.
I'm extremely proud of the things I have been able to accomplish this past year, and I'm looking forward to being able to do even more! I'm trying not to let cancer define me as a person, but I have to say that it is a big part of who I am now. I am a survivor and I'm proud of it. When people see my leg and ask me what happened, I tell them "I had cancer," and though they look at me with sadness and tell me they're sorry, I tell them that I'm a survivor and they say, "You're such a strong person," like they know me. LOL. If only they knew the half of it!
I think being involved in the cancer world is a huge thing. It's like joining another family and I have created a website with all of the blogs I wrote while I was going through treatments and surgeries so I could share how I felt and what I was going through. I enjoy being able to help other people through my experiences and volunteer for different cancer events. To read everything I have gone through and experienced, here is a link to my public Facebook blog site: Please "like" and share with your friends!
The most important thing is to find a good oncologist. If you have osteosarcoma, find a good pediatric oncologist, age doesn't seem to matter to them when you are diagnosed with this disease. Have your scans and biopsy done immediately, and get that final biopsy report ASAP so you can start chemo! If you don't have your results in a week, start calling the doctor's office and being a pest. Those results are important and vital for you to begin your treatment.
Get a port...it's the best thing you can do for yourself to save your arms from being pricked over and over again. Get a prescription for Emla numbing cream (for your port site) from your doctor if they don't automatically prescribe it for you. If you are nauseous, try eating crackers, toast, drinking Ginger Ale, or eating Ginger chews/hard candies. BE PREPARED TO PEE...A LOT! I was on constant fluids for several days at a time when I was admitted for chemo. I peed 1 liter every 2 hours! It was crazy...I never thought chemo=peeing your brains out. Basically they pump it through you quickly and they want to flush it out just as fast.
Bring baby wipes to the hospital to wipe your body with since you can't shower with a port in. Bird baths with a washcloth and bucket of soapy water are also helpful.
If the chemo causes you to have body aches where you feel like your skin is on fire or bruised, use a heating pad. It really does relieve the pain...trust me!
Get a massage when you are physically able to. Being in a hospital bed for days at a time sucks.
Bring your laptop, mp3 player, books, or anything else that will occupy your time while you are in the hospital. You will be bored...all the time.
Drink lots of fluids when you are on Methotrexate. It can help lower your blood levels so you can leave the hospital a day earlier sometimes.
Get plenty of rest during and after chemo...you won't have much choice anyway since you will barely make it out of bed some days.
HAVE PEOPLE THERE TO HELP YOU! This is a HUGE thing...you can't go through it alone. You'll need a support system and people to help you take a shower or even eat on the bad days.
Eat good foods to re-gain your strength. Beef stew and other hearty things, good meals, protein, fruits and vegetables, and lots of ice cream lol. Don't change your diet unless your doctor specifically tells you to.
There are a lot of "whack jobs" out there that will tell you to cut this and that out of your diet and that this causes cancer and this cures cancer. Don't listen to them...they have no idea what they are talking about, and they are crazy if they think there is a cure for cancer, but that there is a huge conspiracy to keep it a secret.
Be honest with people and tell them what you are going through. Secrets only lead to rumors and you have enough to deal with. The more people who know about what you are going through, the more people you have to support you and pray for you. If you don't want anyone to feel sorry for you, just tell them that. It's as simple as that.
Try to find other people with the same cancer as you to give you advice.
PRAY! This is the most important tip I can give you. I believe that God will take care of you, no matter what happens. God bless you!
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