Ive now finshed my first cycle of chemotherapy which is hopefully the first step towards a recovery. You will all be glad to know that the tumour in my right leg has shrunk already which is a pretty good sign the chemo is doing what it is meant to be doing. I start my next session on 4th July and im hoping i wotn have any infections or extra visits to hospital in this time.
Im very touched by all the messages i have recieved from family and friends and also the fundraising and charity events people are putting together for me. This blog maybe my last for a week or so as there hopefully wont be much to keep you all updated on.
Bye for now
Matt
Wednesday, 17 June 2009
Sunday, 14 June 2009
Towards the end of my first chemotherapy
I am coming towards the end of my first session of chemotherapy now. Today is sunday and its been an up and down day. I woke up feeling quite sick and thought i was going to have a shit day. However i had some anti sickness tablets and perked up. My mum sister julie, bro in law steve niece jess and nepthew mitch came to visit today and i was quite happy played a card game and pool and went on the wii. They left at about 230 and the my dad and bro phil came which was good played pool and watched cricket.
I have also had my mates lee wix and storr and creesy and sacha visit this weekend and my girlfriend roisin and also my sis in law michelle and little niece megan and nepthew thomas. Im very popular at the moment and i appreciate all the phone calls and visits so thank you everyone. I go home 2morow and will be able to relax but also plan on doing some exercise to keep the blood and adrenaline pumping.
Anyways thats enough rambling now talk soon
Matt
I have also had my mates lee wix and storr and creesy and sacha visit this weekend and my girlfriend roisin and also my sis in law michelle and little niece megan and nepthew thomas. Im very popular at the moment and i appreciate all the phone calls and visits so thank you everyone. I go home 2morow and will be able to relax but also plan on doing some exercise to keep the blood and adrenaline pumping.
Anyways thats enough rambling now talk soon
Matt
Friday, 12 June 2009
First day and night of chemotherapy
Hey i arrived at St James Hospital yesterday at 10am and was told i would be getting a single room to myself which i was happy about. My ward which is ward 94 is less than 18 months old and in the ward there is a day room with a pool table, sky television and a nintendo wii. There are also computer facilities and another room with an xbox 360. My dad and step mum sylvia came and stayed with me for a while on the night and we watched the soaps.
I started my chemotherapy at 430pm and had four drugs and various drips until 230am!!!! So my sleeping was interuppted but i am not as tired as i thought i wold be yet. Im having chemotherapy today and tommorow and more fluids on sunday. Im just waiting for my girlfriend Roisin and two friends James and Sacha to arrvie later.
Ill keep you posted
Matt
I started my chemotherapy at 430pm and had four drugs and various drips until 230am!!!! So my sleeping was interuppted but i am not as tired as i thought i wold be yet. Im having chemotherapy today and tommorow and more fluids on sunday. Im just waiting for my girlfriend Roisin and two friends James and Sacha to arrvie later.
Ill keep you posted
Matt
Wednesday, 10 June 2009
Test results and hickman line
I have now being given all my test results the CT scan, bone scan and bone marrow test. These results determine what stage my cancer is at diagnosis and all the test came back clear which means there is no sign of spread of disease. Therefore i have non metastatic ewings sarcoma which is very good for a cancer patient and gives me the best prognosis possible for fighting the cancer and getting rid of it.
I have also had a hickman line put in my chest. This is a central line that is inserted under local anaesthetic. The tube goes in one of the main veins near your heart and is put in to make injecting drugs and fluid easier without the use of needles. I also had sedation for my hickman line and when i went home i felt like i had being out on the lash all night i was very sick and went to bed at 9pm for 12 hours!!! Initially my chest was sore but the pain has worn off now and the line will stay in place until my treatment is over.
My next blog will be all about my first batch of chemotherapy i will also submit a quick blog about my background for those who dont already know!!!
Cya for now
Matt
xxxx
I have also had a hickman line put in my chest. This is a central line that is inserted under local anaesthetic. The tube goes in one of the main veins near your heart and is put in to make injecting drugs and fluid easier without the use of needles. I also had sedation for my hickman line and when i went home i felt like i had being out on the lash all night i was very sick and went to bed at 9pm for 12 hours!!! Initially my chest was sore but the pain has worn off now and the line will stay in place until my treatment is over.
My next blog will be all about my first batch of chemotherapy i will also submit a quick blog about my background for those who dont already know!!!
Cya for now
Matt
xxxx
Tuesday, 9 June 2009
First clinic with Mr Grimer
On monday 1st June i attended a clinic with Mr Robert Grimer at St James hospital. At the clinic Mr Grimer sat me down and explained that my tumour was in my fibula bone at the lower end near my ankle joint. The plan was for the chemotherapy to kill 90% or more of the cancer cells and then he would remove the diseased part of the fibula bone plus abit extra just to be safe. He told me there was a problem with this.
This is because he would not be able to leave me any fibula bone to support my ankle joint which in turn would leave me with an unstable ankle which is very serious. To try and rectify this problem he said there were two options. Firstly he could remove some of my fibula from my left leg and pin it to my right tibia bone and use that to support the joint. This would be ok for walking but twisting and turning and contact sport would be out the question and the new supporting bone would last for 10 years maximum. The other option would be to fuse my ankle joint to my tibia bone which would give me a stiff ankle which is also not good.
Mr Grimer then said if the chemotherapy did not work as well and the tumour did not shrink as much the only option would be a below knee amputation to be safe. He said if this was the case with how good prosthetics are these days i would have near perfect mobility and be able to run and play sport.
At the moment my reaction to this is i would go for an amputation even if the chemotherapy worked well. This is because i am only 20 years old and want to be able to play sport and be active once my treatment is complete. I know to some people this seems extreme and hard to grasp but i have accepted that my right leg is going to be useless and the best way forward is to have a prosthetic and take up running as a sport. I might even end up a world beater!!!!
This is because he would not be able to leave me any fibula bone to support my ankle joint which in turn would leave me with an unstable ankle which is very serious. To try and rectify this problem he said there were two options. Firstly he could remove some of my fibula from my left leg and pin it to my right tibia bone and use that to support the joint. This would be ok for walking but twisting and turning and contact sport would be out the question and the new supporting bone would last for 10 years maximum. The other option would be to fuse my ankle joint to my tibia bone which would give me a stiff ankle which is also not good.
Mr Grimer then said if the chemotherapy did not work as well and the tumour did not shrink as much the only option would be a below knee amputation to be safe. He said if this was the case with how good prosthetics are these days i would have near perfect mobility and be able to run and play sport.
At the moment my reaction to this is i would go for an amputation even if the chemotherapy worked well. This is because i am only 20 years old and want to be able to play sport and be active once my treatment is complete. I know to some people this seems extreme and hard to grasp but i have accepted that my right leg is going to be useless and the best way forward is to have a prosthetic and take up running as a sport. I might even end up a world beater!!!!
First Visit to St James Hospital Leeds
After my visit to Mr Platt a Mr Grimer rang my father and explained i would not have to go to Birmingham until my surgery. The plan was to have 9 months of chemotherapy and surgery. I was booked into a clinic to see Mr Ian Lewis at St james hospital this was on 29th May 2009. When i met Mr Lewis he came across as a very nice consultant and he explained what Ewings sarcoma was and told me it was his specialist field. He informed me they could not stage my cancer at this point and i would require a CT Scan (to check for cancer in my lungs), bone scan (to check if there was spread to the bones) and a bone marrow extraction (to check spread to bone marrow). The results of these tests would confirm the stage of my cancer. Mr Lewis however told me that with nearly all cases of Ewings Sarcoma microscopic spread usually has occured this type of spread is treatable as the chemotherapy kills off the cells befoe they can seed. The treatment procedure would be 6 cycles of chemotherapy and then surgery then another 8 cycles of chemotherapy. My next post will tell you about my first meeting with my surgeon Mr Grimer
Monday, 8 June 2009
Initial diagnosis
I was initially diagnosed with Ewings Sarcoma about 6 weeks ago. However before my diagnosis i went to hospital with what i thought was a football related leg injury. I was playing in a match for my team and i got studded in my lower right leg and i got a shooting pain down the back of my calf. This happenend on a wednesday and i decided to go to Hull Royal Infirmary A and E department here i had an xray and was told to attend the fracture clinic the next day. At the clinic i was told there was nothing majorly wrong and to come back in 3 weeks.
Two weeks later i got a phone call from a Mr Sattari and he said i needed to go for an mri scan on my leg. When i had my MRI scan a Dr Taylor expressed his concern and informed me i was to have a CT scan straight away. The CT scan came back clear and i was sent home and told to come back for a needle biopsy the next tuesday.
I had my needle biopsy and at this point Mr Sattari informed my father that there was a concern that the lump in my leg was a sarcoma and the biopsy results would tell us for definite. A week later i attended the clinic of Mr Platt at Castle Hill hospital in Cottingham near Hull, he confirmed that the tumour in my leg was a sarcoma called Ewings Sarcoma. This is a very rare form of bone cancer that effects only 4 in a million people in the UK per year. He informed me that my treatment would take place in Birmingham under the care of Mr Robert Grimer. I would then wait a couple of weeks for my next contact with a doctor.
Two weeks later i got a phone call from a Mr Sattari and he said i needed to go for an mri scan on my leg. When i had my MRI scan a Dr Taylor expressed his concern and informed me i was to have a CT scan straight away. The CT scan came back clear and i was sent home and told to come back for a needle biopsy the next tuesday.
I had my needle biopsy and at this point Mr Sattari informed my father that there was a concern that the lump in my leg was a sarcoma and the biopsy results would tell us for definite. A week later i attended the clinic of Mr Platt at Castle Hill hospital in Cottingham near Hull, he confirmed that the tumour in my leg was a sarcoma called Ewings Sarcoma. This is a very rare form of bone cancer that effects only 4 in a million people in the UK per year. He informed me that my treatment would take place in Birmingham under the care of Mr Robert Grimer. I would then wait a couple of weeks for my next contact with a doctor.
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