Embracing the bald look

Well, so much has happened today i wouldn't know where to begin. Let's start with the hair, I woke up this morning and it was even more patchier than yesterday! The patches were growing and I was moulting a lot. Now there are 2 dogs that moult in the house already and we don't need another source of hair droppings. So I said to myself, I will have to just shave it all off soon as it was starting to look silly and I would have to start wearing a hat anyway, so I might as well shave it. It was too early to do in the morning as I had an appointment to get to. I had a Long Line insertion where they put a small tube into one of your veins near the neck and then feed it through to get as close to the heart as possible. This helps pump the medicine around the body more efficiently and it also means that there will be no more needle for blood test or cannulas as this is like a permanent cannula. The procedure was not actually too bad. The worse bit was the anaesthetic needles which stung like f***! I got jabbed once in the chest and one in the neck! Not nice. Then they just insert the line in and then do X-rays to see where it is and if it's close enough to the heart. It was done in 10 mins. Now I am currently very sore from it. It hurts to turn your neck and it's just uncomfortable at the moment. It should be like that for the next few days but it's not the worse feeling in the world.
After the insertion, I then had a very important meeting with my consultant. I was going to find out the results of the bone marrow test. While waiting in the waiting room, I was nervous but I didn't have a funny feeling like i did for the biopsy results when I found out I had cancer. These results were important because if the bone marrow was infected then I would just refuse the treatments and enjoy the time I had left. Luckily this is not going to be the case for me as the results were good and it all came back clear. To also finish a day with even more good news, while he was checking me, he tried to feel the tumour. He tried really had to find it but he couldn't. He said that last time he could definitely feel a large lump easily but it was gone. Looks like the cancer is responding really well to the treatment and it's shrinking a lot and making a big difference already. If the results are this good from the first treatment, I am looking forward to what's going to happen after 5 more treatments! I have to say that I've been feeling really good this week and on few days I haven't used a stick to walk and not taken any medication or pain killers. I am feeling so much better and nearly 100%. People would probably not know that anything was wrong if my hair was fine.
That brings me to the last part of the day and the one everyone is interested to see. It's not a bad thing or a horrible thing that we are curious about these things and that we want to see it. I would be the same if it was about anyone I knew. And also one of the reason I'm posting this picture is so when my friends see me, it's less of a shock to them. Like I mentioned before, everyone has seen me being myself and back to normal and I'm sure people forget, like i do sometimes, that i do have this horrible disease. Without a visual representation, it's easier to forget and maybe not even understand. I have to admit, it's sunk in a lot more now to me what I am going through and that I will have to be at my lowest before I can get back to the top. The journey almost begins here as things are only going to get harder from now! But I say bring it on! I didn't let the hair fall out completely coz of the cancer, I cut it. I didn't let myself get an infection, I looked after myself. I haven't been sick and my appetite has definitely not disappeared! So far I am staying one step ahead and the only price that I have to pay is to lose my hair! I have lots of hats to chose from each day so it's not a problem and it's not forever! I used to have to shave twice I week which I hated so it's gonna be nice to have a little break : ).

Anyways here it is... Officialy bald and proud : )!

Weak, limp and lifeless...

...Talking about my hair, just to clarify that for the perverts out there. I never realised just how quickly my hair would fall out once it started. Today has been the worst day for it as it just kept coming out. I am now going to bed with a massive bald patch on one side and I'm looking forward to finding out how much will be left in the morning. I am guessing that the more I fidget, the more will come out.
I am not upset by it anymore but I don't have the courage yet to shave it all off. I think it will hit me hard once it's all gone. It will just be a constant reminder of this horrible illness but at the same time it's a reminder that I am a strong person and I will get through it. I was hoping that my hair will be there till Monday as I have an appointment with a wig specialist to see what they could offer me and it would be good to show what my hair colour is now. It would be a real hair wig and depending on how silly it looks I might consider getting one. Just to help draw attention away from me as I wouldn't want people staring at me or treating me any different unless it's to skip queues at theme parks or discount off food bills... Only joking.
So yea at the moment it looks like a 6 year old with an electric razor just took to me hair. But I don't want to wear a beanie as that would probably just get rid of even more hairs. Also the feel of my hair is sooo different to my normal hair. It actually feels 'weak, limp and lifeless' like Cheryl Cole would say but not even L'oreal could help it. At least I know what she means now with that saying.
Tomorrow morning i have got my PICC line insertion. I am dreading it and probably more than the bone marrow one as i don't like needles or things going up my veins! It's just not a nice feeling and I just hope they do it really quickly. I wish they would also give me gas and air. That shit was great last time.
So anyways here is a pic of my sexy bald patch and I will let you know how my insertion went tomorrow.

I plucked myself tonight

So, this evening did not end on a high and not just because England got kicked out the Euro2012. I first noticed on Friday when I woke up that I began 'moulting' from the lower part of my body. This was not unexpected but it still took me by surprise as up until then, there has been no hair loss. I ended up just shaving it all off, everything that was falling out as I didn't want to start leaving a trail around the house and especially in the bathroom. After brushing my teeth this evening, I was looking at myself in the mirror and I was pleased that I still had so much hair left. For some reason I thought, let me try to pull a bit of my beard hair to see if it would come out. To my surprise I found a lot of my little beard hairs in between my fingers and it was a shock as to how easily and without any pain it came out. So I ended up pinching out more and more and in no time it was virtually all gone! I actually ended up plucking my beard hair out. After then I went into the bedroom and I looked at myself again, and I stood to think for a second. I was really curious to know but at the same time as was scared of what the results would be as I didn't want to further upset myself. I knew that I wouldnt be able to sleep tonight if i didn't try so I ended up pinching a bit of my hair and I pulled a little. I looked down and my fingers and there it was... My hair is officially coming out! It's been two weeks tomorrow since I had my first session and if I am honest I didn't even expect my hair to be on my head at this point so I've done really well. Secretly I think i was hoping to be an exception where my hair wouldn't fall out but that is definitely not the case here. The treatment is definately working though, so at least I know that for sure. I am just going to leave it at the moment and just let it fall out gradually and not pluck it like my beard. It is a sad moment when you are faced with it. I had such a good weekend though. Friday I ended up going to work and caught up with everyone and got to see some of my work mates from Canada who kindly sent me some presents down. They are such nice people as Ive only known these guys just for 2 months and they are all so genuine and caring. Especially my buddy Randi who I got to Skype today finally. Then I also had my best Shevz visit who I took to Durdle Door and we went on a treasure hunt :). Oh and Nat from Cardiff also popped in who cheered me and brightened up my saturday morning with her funny stories. Today has also been the first day in a very long time where I didn't actually take ANY drugs at all. I have finished my course of drugs and currently only taking pain killers when necessary. It feels so amazing not having to take anything. I think I will sleep well this evening with no funny dreams. I will go and test that theory and will blog again later.

2am ramblings!

Well it's been half an hour now and I just cannot sleep! I did go to bed quite early as the headache came back and I was starting to feel feverish. The fever has now seemed to have disappeared luckily as I do not fancy another trip to the hospital but now I'm just sweating like mad and cannot sleep. It's surprising as I'm loving the sound of the rain hitting the windows as it falls down when it's really outside quite like tonight.
I am currently kicking myself as I haven't done anything this week as its Sarcoma awareness week coincidently. I think at the moment while I am feeling weak and rubbish I just want to concentrate on getting better and then I want to start raising money for charities! I have been so impressed at how many have been in touch and involved in my case and they all want to help. I am fortunate enough to not need any support at the moment but it's so nice to see where the money for charity is going and how it is used to help people out. Even if it's just wigs for teenagers or complimentary therapies they can help a person out a lot.
So far, I have started donating a lot of my old clothes, I have sponsored some friends walks/bike rides and I want to start getting involved a lot more. First one on the list is a sky dive. I've always said that I would never do one and it's one thing that I would refuse to do. As cheesy as it sounds, I see things a lot different now and every day counts and I want to make the most of everything as you never know what could happen tomorrow. This does not apply just to people that are ill but to everyone.
Also I have now become one of those annoying people who have problem with people that smoke and do not look after themselves. I've always said that I was not going to be one of those people after I quit but I am. My view on people that smoke and don't look after themselves: you are being so incredibly selfish as even though you might think its your choice as it will affect you and your body, well it affects the people close to you who care about you hell of a lot more!! I don't think anyone should be put through watching their loved ones suffer if its avoidable. In the long run, I think it's more emotionally harder and disturbing when the loved one has to watch you suffer and feel helpless. If its avoidable then bloody don't do it!! I know it's easier said than done but once you've experienced pain and suffering and feeling helpless you would understand.
I am just so happy, thankful and lucky to have a great support mechanism around me and i just appreciate all my friends and loved ones! This experience has really showed me who my true friends are, who the genuine people are and which people are just nice human beings. People I haven't spoken to in years have got in touch and offered help which is very nice and I really appreciate the thoughts. It doesn't take a lot to send a message to see how someone is doing even if they don't reply, at least they know you are thinking about them and care.
Right, think this post was a bit of a long one but I just needed to get some stuff of my chest. Hopefully I will be able to go to sleep now otherwise expect another post and I will talk about my fear of clowns...

Making the most of the good and poo days

As cheesy as it sounds, this week has been a bit of rollercoaster so far. Had a really good day on Sunday and to be fair Monday started of really well too as I felt good in myself. Although I felt really well on those days I had some poo problems. It was expected of chemo and the drugs to make me constipated but it only half worked with me... my poo ended up being so hard it felt like I was giving birth to a squirrel every time I went to the toilet. There ended up being quite a bit of blood in there too which adds to the realistic birthing of my poo but my main concern was catching an infection due to the low immune system. I got in contact with my oncology nurse who advised me to go to the hospital to get it checked out as there is a big risk of infection. I stupidly ended up going to the hospital where I after waiting 6 hours to be seen, I gave up and went home. I wasn't angry that I wasn't seen, I was really angry I wasted a good day... it was sunny, I felt good and I ended up spending it in the place which I am trying to avoid spending any extra time in. The point I want to remember is, unless I feel really sick do not go to the hospital... If I can go to the GP or deal with it myself, do not go to the hospital if you feel well and it's just a concern. Make the most of when you feel great. I am hoping to finally do some proper work soon as I actually miss working. I also want to start walking the dogs on my own as I used to find it very therapeutic and it allowed me to gather my thoughts. Unfortunately the weather is now meant to be really crap for the next few days so I will just have to leave the dog walking to Mike haha.

Today I woke up with what I can only describe a hangover from hell. My head felt as if I spent the whole day yesterday drinking my grandad's moonshine and I was paying for it big time. I've been constantly checking my temperature as this is really important after chemo as it's one of the first signs of infection. The only downside is, paracetamol lowers temperatures which in turn can mask infections so I didnt end up taking any. I've been drinking plenty of water instead and napping most of the day. Not very productive but I felt so rubbish. My temperature is low though and so far no signs of infection and im bound to feel like this as today is day 9 since chemo started and days 7-10 are meant to be the hardest. I ended up popping to the shops to stock up on some fruit to resolve my poo issue once I had the energy. I have some good advice for anyone that needs their stool softened; eat fruit which names begin with 'p' - pears, pineapples, prunes, papaya, pears etc.Avoid bananas as they seem to block you up. 

My taste has also improved, its not as snobby. I still cannot enjoy a good old bland pot noodle. I am loving strong tastes: things like tuna, spring onion, a nice steak :). It's actually making me eat healthy without forcing myself to which is a nice side effect. 

The ball ache

Sooooo, when I checked out of the lovely hospital I was presented by a whopping assortment of drugs. I could not believe my eyes when the nurse brought it out and my first thought was 'shit if I get pulled over the police they are going to charge me with intent to supply as there is no way that can be 3 weeks worth of medicine for 1 person'. To my relief, the packaging did make the amount of drugs look like more than there was but there was still enough to have 8 tablets 4 times a day for 3 weeks. If you do the math that's over 150 pills... Ugh.
I was set to go home on the third day but because I ended up being sick it was not possible for me to have the after chemo meds (mesna) orally so I had to wait 12 more hours on a drip. The hardest thing about the drip is the cannula! I just hate needles and I know it's a little plastic thing in your vein that provides a path to your heart and rest the rest of the body but it scares me. I am just very self conscious that is it there and I don't want to bend it or break it as I think I will create a scene out of Kill Bill. Maybe it's just because I associate it with needles and poor Susan (the nurse) kept missing the vein and she didn't make my fear any better.
Luckily I haven't been sick since the hospital, and I'm trying hard to keep the food down as I don't want to go back to the hospital. This does mean a lot of napping during the day and feeling shattered helps me go to sleep. The most annoying thing for myself has been the heightened sense of smell and the snobbish taste for food. Everything seems to smell like chemicals and toilet cleaner, even my £40 Pacco robane eou de toilet! I feel like I can't wear it anymore. Then the good quality food I used to really enjoy like pot noddles and tikka masala seem to taste so bland and awful. I hope that it's not permanent as I don't think I could survive on toast and milk my while life! But if I do, it could be worse, at least I'm not gonna be stuck eating Mike and Hailey's burnt spuds every day! Haha only joking guys.
I will finish this blog on an unsavoury note... I've had nausea, sensitive eyes, fatigue but the strangest one is the testicular pain. One of the drugs 'ibufsomide' is also used to treat testicular cancer as well as lymphoma and sarcoma and I think that this is chocking all my little one who are wriggling to stay alive, hence the pain. It also could be the steroids they are giving me for the nausea which is probably shrivelling my nuts but it's a small price to pay for life : ). At least there is over 15 million now banked and only one is needed to make a little Dal. But the world is not ready for that yet so will just have to wait a bit longer for that! Thank god haha.

It's official. Cancer sucks...

...The biggest understatement of the century. I have to say that there is nothing you can ever do to actually prepare yourself for chemo. You may think you are mentally and phyically prepared for it, but let me tell you something... BAM!!!

 It hits you out of nowhere. It just doesn't make sense when all you see is JUST a couple of bags of fluid injected in you and you can only think to yourself just how much harm can that do. Well the answer is a lot. It's some pretty toxic stuff which is doing a lot or harm to your body in the short term but helping in the long run. Thats something I keep reminding myself whenever I feel low and yes, it doesn't help you feel physically better hence the reason I haven't blogged in few days but I need to stay positive! I have been quite upset about it as I felt like I was failing myself by not being prepared enough, strong enough and failing to be an inspiration to those who are going through a similar thing. I didn't want to blog and winge and put people off by scaring them at how hard and horrible it makes you feel. When I started this blog i wanted it to be an honest diary of what I was going through but what I need to remember it's not all going to be about the great achievements, they will come after the last chemo session and the surgery. It's also important to remember the small steps though, the tough one which have helped you get to those achievements! I don't want to spend a lot of time concentrating on the bad stuff so I won't talk in too much detail about them but I will mention them.

So the battle begins

So, today was a big day. It's been very busy and emotional.
The day started off with another trip to the sperm bank. Less awkward this time as was able to run away straight after.
Then there was another blood test. This went fine, painless and no issues. Lovely lady that did it.
Then it was the time for the one I was dreading... Bone marrow sample!!! This was absolutely brutal, I don't want to scare or worry anyone but be warned, it definitely does not tickle! This was also my first time at having gas and air. During the injection of local anaesthetic, I was told to begin breathing the gas and air. All of the sudden, out of no where I began to laugh hysterically! I just could not stop and the two nurses ended up laughing with me. I have no idea what was so funny but yea, I see why they used to call it laughing gas. After 10mins the biopsy started. I don't actually remember much of it, I just remember being in a lot of pain and breathing a lot of the gas and air and I was also gripping the metal bed handle very firmly. I could feel the force of the nurse wriggling the 'corkscrew' tool and it was not pleasant even on gas and air. But it did help to keep my mind off of it. I asked to look at the sample afterwards and I never realised that the bone marrow looked like a worm. So now just need to wait for the results to see if it's been contaminated. If it has, I'm pretty much screwed as chances of survival go down to 10% but I'm sure it hasn't, I can just feel it : ).
Then I had the heart scan which was fine, it was just like an ultrasound of the heart. Nothing painful or scary there.
Then came the final chat with the consultant who wanted to go through everything one last time before chemo started. I ended up mentioning the thing I discovered yesterday about the survival rate for young adults being smaller than children. He said this is not the case anymore as the same treatment is now given to everyone, adults and kids, unlike before so everyone has the same odds. This cheered me up but didn't last for long as he then mentioned that apparently in the end they think they found something on the MRI scan which might indicate its spread to the other side of my pelvis but not as much and it's not clear it is cancer. If the chemo doesn't get rid of it after 3 sessions then they might try to zap it with radiotherapy. We will have to wait till after 3 sessions till we see the scans to confirm what's happening. It's not a big worry at its not confirmed to be anything yet and it's also very small.
I was then all set to start the chemo. First thing that needed to be done was the cannula had to be put into my vein on my hand. I really hate needles and the nurse managed to miss it the first time. Then she suggested using the left hand as I was right handed. Then she missed two more times. I got really frustrated especially coz i hate needles and 3 times was too much. I then asked for another nurse and I didn't want to cause her any offence. She seemed to understand and she got another nurse. The nurse was a lot younger and more friendlier and she managed to get it in the first time and without pain. Was really impressed. She then administered the first chemo. This was not too bad, really scary as I was told if it leaks out of the vein it could cause burns and other damage but it went fine. I have finished 3 lots of chemo at the moment and just about to have the 4th which is the longest and lasts 3hrs. After that its then 12hrs on a drip to combat the side effects. Then whole process starts again tomorrow after 2pm.
I'm feeling OK at the moment. Little tired, mostly as I've been awake since 6am. Hopefully I will get a decent night's sleep.
Loving my room. Private ensuite room with a kitchen area and a big tv. Can't complain, it's like a holiday apartment but with lots of medical equipment : )

The night before chemo

So I was dreading today as I was really worried about getting my hair cut really short! Luckily my friend Maddie did a great job with my funny shaped head and did the best she could! Thank you very much Maddie as I am pleasantly surprised as it doesn't look as bad as I expected it to look. I do look more like a foreigner but it's fine, I will embrace the thuggish look for a few days : ).

I highly recommend anyone to cut their hair short before chemo to reduce the shock of when the hair starts comes out. It will be less dramatic when it comes out in little bits rather than big bunches.

I am currently having a lot of mixed emotions about tomorrow! I am absolutely dreading the corkscrew biopsy tomorrow but at the same time I am looking forward to having gas and air for the first time. I am just a wimp when it come to pain. In regards to chemo, I am looking forward to it as I know it will make me feel better and it will help prevent the cancer from spreading but at the same time I am worried about how it's going to make me feel. I've been really positive about it so far but I am slightly worried I am under prepared and it's going to hit me hard. I can take it though I am just fearing the unknown which is only natural.

I was googling stuff on the Internet and I've read a lot of worrying stuff about Ewing's Sarcoma. I've been reading research papers which are over 10 years old but they all basically indicated that chance for survival for over 15 year olds is far less than the younger. Also if the cancer has grown outside the bone which in my case it has, survival rate is also GREATLY reduced. This was a bit of set back for me and really made me feel down and upset today. I keep reminding myself that the papers and research was over 10 years ago and treatment I am getting now is different than what it was back then. It is making me wonder if the doctors as nurses are not being 100% honest with me and if that's the reason why everyone is being so nice to me. I will have to mention this to them but I guess I should wait and see how the cancer responds to the chemo first.

I do need a pick me up at the moment and having Mike there with me for the whole week will help me a lot as I wont be alone. So I say bring it on!

Preparing for chemo

Today I did some prep for chemo. I have been warned that I will be very susceptible to infections so I ended up buying 5 bottles of hand sanitizer so I can put them in different rooms of the house. I have also gone out and purchased a baseball cap as it was impossible to buy a beanie hat anywhere! I know its not winter but its not like its summer at the moment. Baseball caps really don't suit me though, but at least it will keep the sun out of the eyes when it does bloody come back out : ).
I have been also advised by the nurses that I should try to avoid going to cinema during the chemo period as in closed environments I could easily catch an infection. So I ended up going to see the last film in the cinema for a while... The Dictator. I was so disappointed by the film and I wish I went to see Promethius instead. Oh well, will just have to wait until the DVD is out. The trailer of Spiderman looked amazing, I might just have to risk it and go and see it when it comes out.
I also ended up buying some ice lollies as apparently the first thing I will get is mouth ulcers so the ice lollies should help. Cant believe I will be using ice lollies for medicinal purposes, that's a right result.
Started cleaning the house, bleaching, dusting, hoover etc to try and make it as clean as possible. The biggest sacrifice will be not being able to get kisses from the puppies though. That only means that they get extra cuddles.
Throughout the last few weeks I have also had the pleasure of eating at all my favourite places and my favourite foods: Nando's, PizzaHut, Dominos, Subway, Harvester, KFC, Burger King, Kebab, an amazing Roast dinner cooked by couple of my best friends Mike and Hailey, Peppercorn chicken and had a few BBQs. I have been told that my taste for food will change so I made the most of eating all my favourite food in case I stop enjoying any of them.

It's really important to know what to expect during and after chemotherapy so you can prepare yourself for it. I think I am well prepared for it, but I am sure I've missed a few bits out. I think I've got most important things to me covered though : D.

Bring on tomorrow for the hair cut.

"I am my hair"

As Lady Gaga sings "I am my hair". This is definitely true in my case as I have to admit, I am very vain about my hair. My appearance has changed over the years: I've put weight on, style of my clothes has changed but I've always relied on my hair to make me look good. I am not saying I am the most good looking person in the world, I am just saying that when I do my hair, my confidence is lifted and I feel happier within myself. When I was younger I had really short hair which made me realise I have a massive head. With longer hair, I can shape it to disguise the look of it.
When I was told I could have Lymphoma, I was also told that my hair will most likely NOT fall out. Then when I found out I actually had Ewing's one of the first things I was told that my hair will definitely go due to the drugs involved with the chemotherapy. There is also not an option for a 'Cold Cap' which helps prevent hair loss during chemotherapy due to the intensive chemo I will have. I have had to come to terms that my hair will go and to prepare myself I asked my hair dresser and a very close friend Maddie to cut my hair really short the day before my chemo starts. I am really dreading it as I don't think the short hair will suit me but at the end of the day, it's a small price to pay to live longer. When you put it in that perspective it doesn't sound that bad.
What I want to make clear is that guys especially teenagers and younger adults are affected by hair loss as well as women. We now live in a society where men take pride in their appearance as much as women do and I think that it is important to remember that it is okay to feel upset about losing hair and that there are things out there to help with this.
I have been advised that I will be entitled to a free wig which I will definitely look into but what matters the most is that I am alive and the hair loss is only temporary. I might consider wearing a wig if it doesn't look to fake when I go out into public, this is to help me with my confidence. I feel like I should be treated like any other person whether I have cancer or not, so if I can draw attention away from myself, it would make me feel a lot happier.
One thing I was really surprised about is how quickly I will lose my hair. I thought it would be after my 2nd or 3rd treatment but apparently it starts falling out few days after the first treatment. What I need to remember is that... if the hair is falling out, the treatment is working and it is only temporarily.

The awkwardness of sperm banking

I just wanted to note down and say how awkward and embarrassing the process of going to a sperm bank is. During my first 'session' I was called in and few details were taken from me. They also needed to check my identity which was fair enough and then I was shown to a room with a cup and some instructions. These were not instruction on how to masturbate but what the process is. There was also a 'yellow' folder to help you 'reach the goal' which really disappointed me as I expected a wider choice and maybe some sort of mini-library. All I can say is thank god my phone was fully charged and I had a 3G signal as I would of been in there for hours. The only annoying thing was is that I kept receiving Facebook notifications and SMS messages while I was concentrating on getting out of there. Other things that really put me off is that I kept having to check that the door was locked and it was unsettling whenever you heard someone walk past the door. Also the armchair was very uncomfortable especially whenever I remembered what it was actually used for. To my surprise, I managed to get to the end fairly quickly so I shoved the cup in the little paper bag, washed my hands, stuck the paper bag in the little hatch, buzzed the bell and then I virtually ran to the reception. I just wanted to get out of there as soon as possible. Then I remembered that I had to wait there as I had to wait for my sperm to be counted and discuss the plan of action. I never felt more uncomfortable sitting there with my friends who know much more worse things I have done in my life but somehow them knowing what I just did seemed to be more embarrassing than anything else I have ever done in my life. Luckily I have great friends who didn't judge or make it even more awkward for me unlike the nurse that called me back in to discuss the results. She started by saying that on average, each person produces 15million sperm cells per millilitre and I only produce 9. I was so shocked I couldn't believe it and I asked her "What, just 9?" to which she replied "no 9million!". This was a relief to me as I didnt think that was too bad but apparently when the sperm is frozen, only half of them survive. Even still, out of the 4.5million, it only takes one... To her it seemed like a big issue, but for me the biggest issue is that she knew what I did 15minutes ago and then she played with it under the microscope. I ended up signing some forms which even now I don't understand and I was told I had to come (excuse the pun) and provide another deposit before I begin chemo. Hopefully the second time round it will be less awkward as I won't have to stick around for the results.

The story so far... (Part 4) - More tests and results

I was told that my chemotherapy could be done at a hospital closer to my home and did not need to done at Stanmore. The closest hospital is Southampton to me as there is a bone cancer specialist consultant there Peter Simmonds who could perform my treatment. I phoned up Southampton myself on Thursday 31st to check if Stanmore has referred me to them and to find out when I could begin my treatment. I then spoke to a really helpful nurse called Louise who explained loads of things to me over the phone such as the things I needed to know about chemotherapy, further tests which were needed to be done and other worries I had such as hair loss and accommodation at the hospital etc. She asked me if I could come down the following day for a meeting with her and the consultant and as I was free I ended up going to see them the following day. What I have to mention is that all the nurses and consultant I've come across have all been very helpful, honest and most important of all they made time to speak to me and I didn't feel rushed or felt like I was just another patient. They really made me feel comfortable and were happy to answer any questions I had honestly and truthfully which is important as you have to trust them with your life to provide you with the best treatment possible. I was also reassured and a good point was made that the statistics which I mentioned earlier that the 70% survival rate includes the patients from more than 10 years ago when treatments were a lot different than they are today. And also as this is a rare cancer in comparison to Lymphoma, out of 100 people that get diagnosed with Ewings a year less than 30 people die while with Lymphoma out of 10,000 people that get diagnosed over 500 people die. This made me realise that statistics are irrelevant and I stopped worrying about them and focused my energy on getting better instead of worrying about numbers. Something else that was also mentioned and something that really did not cross my mind was that the chemotherapy was going to make me infertile. At the moment I have no plans to have any children now or in the near future, but 10 years down the line if I changed my mind it would be nice to have the option. Kindly enough this was then arranged for me to go to a sperm bank the following week and provide a couple of 'deposits'. Nice. I was also then told that before chemotherapy could begin I would need to have a few more tests done:

- Kidney function test - This was a long and boring test. Again I was injected with a radioactive substance and then had to wait 2 hours. After 2 hours, a sample of blood was taken. This was then repeated after an hour and then finally after another hour. Having to give blood 3 times in 4 hours was not the best experience for someone who does not like needles. The first one was the most painful blood giving experience as the nurse must of gone through scar tissue, but luckily the other 2 were fine and not very painful.

- Heart function test - This involves a scan of your heart. I still haven't done this one and this will be done on the day I start my chemotherapy.

- Lumber puncture type test - This is where they try to get a sample of the bone marrow to make sure it is not contaminated by the cancer. The extraction is apparently very painful, they will do it from the opposite side of my pelvis (healthy side) and they use a 'corkscrew' type of tool to get into the bone and get a sample. I will be on gas an air so it shouldn't be too bad. This will also be done on the day my chemotherapy starts.

That day I also finally got the results from the previous chest and bone scan. Thankfully the cancer did not spread anywhere on the bone or on my chest which has made the treatment a little less complicated. All that is left to do now is the few more tests and the chemotherapy should be starting on Monday the 11th of June.

The story so far... (Part 3) - Diagnosis and more tests

As I woke up on Tuesday the 29th I remember being very nervous but also looking forward to my appointment as now I wanted to know what the next step was and when I was going to start receiving the treatment. I got to the hospital half an hour early and checked myself in. I sat in a hot, busy waiting room outside the consultants office waiting for my name to be called. It seemed like everyone who came after me were being called in and I was left waiting. At one point I noticed my file being separated by the nurses which made me question and panic 'Why is my file separated', 'Why I am waiting for so long'. Instead of worrying I went up to the nurse and asked when I was going to be seen and she said that they didn't realised I was checked in even though it said on the form I arrived and that I was waiting there for a while. They immediately went and found a different consultant to the one I was scheduled to see and got me into the room to see the doctor. When she sat me down she started talking about my history and about my pain and scans etc. It felt like she was talking for a while and beating around the bush and I just wanted to know what it was. When the words "Ewing's Sarcoma" left her mouth, I instantly felt sick. I don't know if it was because of the hot and stuffy waiting room, lack of water or the shock of the diagnosis. I prepared myself for it to be Lymphoma but as soon as I heard Ewing's, I felt like 20% of my chances of survival went out of the window. I remained calmed and tried to take in as much as possible. I was then told of the treatment plan:
- 4 days of chemotherapy for each session every 3 weeks for 6 sessions in total.
- A surgery to remove the damaged and cancer infected part of my pelvis.
- 2 months of physiotherapy.
- Further 6 months of less intensive chemotherapy and radiotherapy.

Before the treatment could start there were a few tests I also had to do to check if the cancer had spread and if my body could cope with the chemotherapy. The following tests were done immediately after the appointment:
- Chest CT scan as this is the place the Ewing's Sarcoma usually spreads to.
- Whole body bone scan. This involves being injected with a radioactive substance, having to drink a litre of water and walk around for 2 hours. Then you are placed in this machines machine which scans your body and takes about 20 minutes. After my head and chest were scanned, I looked to my right and I could see my body taking shape as it was being scanned. It was really interesting to see as The Ewings Sarcoma was clearly displayed around my pelvis area on scan and from what I could see there there was nothing else displayed on the scan which made me feel really relieved.
Annoyingly, I was told that the results of these tests were not going to be available until Friday the 1st June...

The story so far... (Part 2) - MRI Scan and biopsy

I arrived back in the UK on Sunday the 13th of May 2012. The following day I went straight to my GP who referred me to the Orthopaedic department at the Poole hospital. I have to admit the Hospital was a bit disorganised. I waited in the waiting room for about 2 hours, then a nurse took my blood and temperature. I was also told that I have been put on a waiting list for an MRI scan which most likely was not going to happen until the next day. They said they were going to admit me so I would stay the night as I had a slight temperature and it was more likely to get the MRI scan if I was there. At around 5pm I ended up getting the MRI scan but I still had to stay at the hospital as they wanted to keep an eye on me. I waited anxiously for the results but I was told that the scan had to be sent off to Stanmore Orthopaedic hospital in London for the bone specialists to have a look at them. I was told that the MRI scan showed up two 'pockets' (tumours) which were growing around the infected bone and a biopsy could not be done without the specialists permission in case the biopsy caused it to spread or aggravate it. The scans were also sent to the Oxford University cancer specialists for analysis. Unfortunately none of the consultants who looked at my scans could conclude what the scans showed and decide if I should go ahead with the biopsy. I had to wait 5 days - till Friday, when the consultants at Stanmore had a meeting and discussed my case.
This gave me 5 days of endless googling of all the big words from the MRI and CT reports and the possible outcomes. These included different sarcomas, bone marrow cancers etc. It was all pretty scary and grim and I would highly advise NOT to Google anything until you know for certain what the condition is and also to use reliable websites and do not browse through forums.
I remember waiting nervously all day on Friday the 18th for my phone to ring but come 4pm, I still didn't receive anything. I then decided to phone up the Stanmore hospital myself and try to get through to the right department. To my surprise I managed to get through to a really helpful person who found my case really quickly and told me that an appointment had been booked for me for to have a biopsy the following Wednesday. The nurse I spoke to at Stanmore was really honest and said that basically they were now looking to find out what type of cancer it was and they were ruling out a possibility of an infection. She said that it was most likely a lymphoma. I then proceeded to Google lymphoma and I was relieved to find out that the success rate was 90-95% which made me really happy and not worried about the cancer inside me. I wanted to concentrate all my energy on getting better and getting on with treating it. Although I was worried, I really looked forward to Wednesday to having the biopsy as I would finally find out what exactly has been causing me this pain.
I woke up nice and early on Wednesday the 23rd and arrived for my 7am appointment. As I stepped out of the door, I remember turning awkwardly as i stepped down which in turn made my 'hip' click, just like when you click you fingers. That was the most horrible feeling and instant pain which also felt like I was winded and I struggled to breathe. The pain remained for about 15minutes and it slowly went away. I just remember the pain being unbearable for a long time but thankfully it went away quicker than I thought. The day at the hospital was very long. What I was not aware of is that I actually was not due to go for the biopsy until 2pm so I had to wait around for 7 hours in a dull room full of other anxious patients waiting for their biopsy. I was luckily under general anaesthetic and local  anaesthetic during the biopsy so I woke up about 3pm and by 4pm I was ready to go home. I did not feel any pain and I felt like it was done really quickly. The biopsy also included another CT scan. I was told that I would not get the results for 7-10 days so I wasn't expecting them until the end of next week. To my surprise I received a phone call on Friday the 25th that an appointment has been booked for me to get my results on Tuesday the 29th. I was initially excited which was then followed by anxiety. I just wanted to know what it was so I could get on with treating it as I was getting sick of taking painkillers as they were just masking the pain and nothing was happening about the growth on and inside my pelvis. The next 5 days felt like the longest 5 days of my life and I ended up spending it with my friends as it was the last weekend I would enjoy myself without the care or worry of knowing what was exactly was wrong with me...

The story so far... (Part 1) - Initial pain and discovery

This story starts on Friday May 11th, Calgary AB Canada.
I woke up in the early hours of Friday morning about 01:30am suffering from a really bad 'back' pain. Ever since I had my appendix removed 3 weeks ago, I had this really intense pain in my right hip on the back side which would come and go. Previous to the removal of the appendix the pain had always been on the front side of my right hip. I had also been suffering from really bad night sweats whenever the pain occurred. It was so bad I ended up changing the bedsheets nearly every other day. The pain seemed to come and go for days and it was really unpredictable. I've been trying to figure out what set it off but it seemed to be random. Up until now, I always thought that the pain was sciatica pain. Funny thing is, I now know I wasn't completely wrong about this...
So after waking up in pain at 01:30am, I tried different things to ease the pain. As I thought it was a back pain, I tried to sleep on the floor, and then I tried to put some ice on it and sleep on the ice. The pain was not easing unfortunately and nothing seemed to help, even the mild pain killers I had. I then tried to use some creams such as 'deep heat' and different sleeping positions but the pain was so sever I could not go back to sleep. In desperation, I ended up going on YouTube and looked for different sciatica exercises to ease the pain. Again, nothing was working. I looked at the time and it was after 5am and feeling exhausted with no sleep and still in loads of pain, I decided to go to the nearest Hospital and get this pain checked out. I was being really cautious as my appendix was only removed a few weeks ago. After a few minutes of waiting, I finally got to see a friendly doctor who had time to listen to my concerns and not rush me and I finally felt like someone was taking me seriously. I ended up having blood tests, urine tests and an X-ray which none of them show anything unusual up. I started feeling really stupid as I didn't want to look like a hypochondriac as my pain really was sever. The doctor thankfully understood and believed that I was in pain and suggested doing a CT scan. The wait for the scan was very dull and boring. I had to drink 1.5 litre of a 'special fluid' which I wasn't allowed to just chug and had to drink slowly over a 2hr period. After about midday, I finally had the scan followed by some morphine which was the first time I ever had morphine. I have to say it really freaked me out. It felt like someone sat on my chest and I felt instantly dizzy. I really did not like it. After a couple of more hours of waiting, the doctor came in with the results. I remember her reading the results quietly and not saying anything. As she walked through the door, she shut it behind her which indicated to me this was going to be bad news. She said 'thank god [they] did the CT scan' as it showed up some dark patches inside my bone and on the outside which indicated there was a growth inside my pelvis bone and it was spreading to the outside and damaging the soft tissues. She said that it was most likely a bone infection called Osteomyelitis but it could be something more sinister. The exact condition could not be determined until a biopsy was performed. She then said that I need to go back home to the UK on the next flight as the condition was very serious and whatever it was, it was aggressive and spreading. I asked if I could delay if for a week as my sister came to visit and I wanted her to have her holiday to which she replied with a firm 'No'. I then got discharged, got on the phone to the insurance company and I was booked on the flight for next day in the Business Class. This was my first ever time flying in Business Class and it was a shame the circumstances were not different so I could enjoy it properly and order all the expensive alcohol but I will have to wait for that opportunity to come up next year when I go back to Canada...

The image above is similar to the images I was presented. Only the damage was more... Overall it was 40% of my pelvis (80% of the right hand side of my pelvis was infected)