It's been a while

Sorry I haven’t posted much recently. I have been really busy the last couple of weeks and I’ve been feeling really low and didn’t feel like moaning on here. So this might be a bit of long update. I am going to start with session 2...

So after my second session, I couldn’t shake off the cold I had, it just kept lingering. It was actually really annoying as it kept coming and going and especially with the weather we were having, it was not helping the situation. I had to keep an eye on the temperature and one evening it went up to 38degrees. I was told that if it ever gets to 38degrees to phone the hospital immediately and go to there. I thought I'd give it an hour and wait and see if it would go down. When I was younger, my mum would tell me to wrap myself up when I had a temperature and 'sweat it out'. I thought I’d give that a go and within half an hour I was sweating so much and true enough my temperature went back down to below 37 degrees. This meant that it wasn’t an infection and most likely just a fever. The next day I still didn’t feel 100% but I started to feel better. Unfortunately this was before the 10-14 day period which would mean that my immune system was only going to get worse so I thought that I would only get worse. Luckily this didn’t happen and I managed to get out of feeling terrible again. 

Annoyingly, as I started feeling better with the cold, my bum problem started playing up again. This time, the pain was not only when I was going to the toilet, but it was a constant pain in the back side. I found it really painful to walk and sit and this was for about 2 days so I ended up going to the doctors. My GP was on holiday so I had to see another doctor. I explained the situation to him and about the tear and I explained to him that the pain was severe. He then told me to go and lie on the bed with my bum out and face the wall so he could have a look. He then proceeded to have a look at the sensitive area and then he said ‘I know this might hurt a bit but I just need to have a look.’ The next thing I know, he is shoving his finger in my fragile, very sore bottom and I literally felt like someone just stabbed me with a very sharp knife. I have had a prostate exam before so I know what an examination feels like, but when I told him to begin with that I was in so much pain and he still proceeded to do that I felt like punching him for that, there just was no need. He looked like a crazy doctor and he really was a crazy ass doctor. I didn’t let him anywhere near my bottom after that but he was still kind enough to prescribe me a really good cream called Glyceryl Trinitrate. For anyone that suffers from really bad pains down there I would highly recommend this. Apparently the only side effect is that it gives you headaches but I would rather deal with headaches and even chemo than that horrible pain. I’ve might of mentioned it before, but for me cancer is OK, it’s the side effects of chemo that make it difficult. I can deal with the sickness and bloat but I just can’t deal with bottom pains. I just can’t wait until the day when I have a poo and it doesn’t hurt. 

After the second session, I also finally got the wig. Unfortunately I was very underwhelmed by it and quite disappointed. It just did not look as I expected and I built myself to believe that it was going to look really good and I was going to use it all the time. The color of it wasn’t as bad as I expected but the amount of hair was. The hairdresser at the salon did cut it as much as she could but it still looks really long and I just think it’s a really bad haircut. I will see if my friend Maddie can sort it out though, she’s not a wig expert but she knows my hair and is an amazing hairdresser ;). The only time I want to use the wig is for family occasions also for my friend’s Russell and Sallies wedding as I do not want to wear hat and look scruffy or be bald in the pictures. Their wedding also falls under the same week as my last session of chemo. The way I have been feeling so far, I don’t think I will be able to last the whole day without going for a nap and the amount of medication I would be on, I don’t think I would be able to enjoy myself. So I have asked my consultant if I could delay my last session by a week. Usually they do not like to do this but since it’s my last session and it’s an important event to me they will be a able to do that. I am not doing it so I can drink or get drunk which is the last thing I want as I am tired of feeling sick, it’s only so I can be there and be awake. Another thing that the consultant mentioned is that i'm anemic which would explain why I have been feeling really low and tired constantly. 

Let's talk about mothers

Some of you may not know but my mum still doesn't know about my cancer. This has been a difficult decision I've had to make and many of you will probably not agree with my choice but the reason behind is for the best interest of both of us... me and my mum.

My relationship with my mother is a difficult one. First thing that I want to say is that as a mother, she is brilliant. She is very caring and is always looking out for my best interest even though she might not know what they are. The main problem is due to the cultural background, she has never 'moved on with the times' so she is stuck in the old fashioned ways. Some examples: she didn't want me to buy a house until I got married. I should marry a Croatian girl. I shouldn't of moved out of the home and should still live with my parents. She never agreed with my choices and she has never been supportive but she did let me get on with them which I respect her for.

From a young age I was a very independent child. I had a great childhood with many happy memories with my family but I did grow up very quickly. As a young boy I witnessed a war, I watched my parents get discriminated against, I watched my parents struggle with money, I watched them work like honest people and work really hard to provide for their family. All this shaped me to be a person I am today and I have my parents to thank for that. I wouldn't change my childhood for a minute as it gave me a drive to make something of myself and make sure that I do not go through the same struggle my parents did. I think my mother always wanted to keep me close to look after me even though I did not need looking after. This is something she never understood and never let go of. To this day she still treats me as a child when I haven't been a child since the age of 11. At that age I was the only one in my family that could speak English and I used to have to ring the utilities companies and arrange payments, I had to take my parents to the post office, I had to enrol myself to a school and take my parents to 'parents evening'.
I've never been able to talk to my mother about anything seriously. If i had any problems, she would either tell me to rely on god or she would lecture me at how it was all wrong and not give me and advice or how to deal with it. I could never talk to her about girls or school problems and I just felt like I was more closer to my friends and my friends knew me better than my mother did. I could always rely on my dad as he would see me for the man that i am rather than a child. So when I got diagnosed I told my dad. I could tell that he was distraught but he stayed strong for me and he understood that i wanted to go back to my own home and deal with it on my terms. He didn't want to push me into doing anything I didn't want to do such as move back in with my parents.
When my mum found out I was sent back from Canada I told her that I had a bone infection and it needed to be treated in UK. She ended up getting really upset and crying in front of me and she kept saying how God was punishing us. She then said that we needed to travel to a monastery in Serbia where they heal people and that we just needed to pray. THIS WAS HER REACTION OVER AN INFECTION?! She also then proceeded to get so upset her blood pressure went really high and she had to be put on some medication as she is borderline diabetic. She also ended up calling all my family in Croatia and telling them how I've got a serious illness and ended up worrying all of them so I ended up getting bombarded with lots of messages. At this point I was not even diagnosed and did not need the extra hassle. She would also ring me crying everyday and wondering how i was even though I was absolutely fine. The only conclusion that i can come up with is that she loves attention and she likes to make it all about her. She doesn't understand what effects it would have on me when she would phone me up and cry on the phone. I thought she was selfish and attention seeking and i just did not need it.
After seeing how she reacted to the INFECTION when i got diagnosed my dad, sis and myself we decided it was best that she did not know the whole truth. This was for her best interest as I think that this would push her over the diabetic edge and also I think she would upset me by phoning me crying everyday. I need my space and I need her to be well as there is no point me having to worry about her as well as myself. Eventually she will find out the truth and she won't take it well but the longer she doesn't know the better. She probably also won't ever understand why we decided to keep it from here but as long as she still has her health, then we've done our job.
I also know that a lot of other mothers reading this will probably not agree with me, but if you knew my mother you would understand.

I do love Mondays!

I've felt much much better today. Weekend has been pretty poo as I've just had a massive headache, I've been congested because of my cold and ive had no energy to do anything. But I woke up today with no major side effects, just a little blocked up nose which I can deal with so if I can see any patterns emerging I would say that looks like Mondays are good for me : ). Something else that I have noticed which hasn't been happening before... My skin on my face seems to be clogging up with dirt and blackheads and I never used to have this problem. My pores don't seem to be a fan of chemo. It just seems really weird and I'm having to moisturise it as well so it's not so dry. I've been using cocoa butter, I don't know any of this stuff, I've never moisturised before in my life haha. Also I am really happy that my tan, from the two hot weeks in May that we had, is going down as my bald head is not looking as bad anymore. Where the hair used to be on my head is basically all white and pale and then my face was quite brown, there was a clear divide so I'm glad that its all merging now. To finish my vein update, i also had a phone call from the salon and my wig has arrived so I'm going in on Wednesday to get myself aquiented  with it and choose a style to get it cut to. I have to be really careful as that style will be with me for the next 8 months at least. 
Also spoke to my manager today about work, I really have to praise him as he's been really supportive throughout all this and it feels like he treats me as a friend rather than an employee. It was great to sort some things out so I can get on and do some work as I really want some normality in my life and I need something to challenge me. I've lost my motivation last few weeks but the chat today has really lifted me and I feel like I want to feel useful again. It was just nice that he took an hour out just to update me on how everything is going back in the office and what the plans were for the next few months. Something small like that made me feel like I was part of the team again which I started forgetting about. Work to me is not boring, I really enjoy my job and enjoy working the people that are there. I don't want to sit at home for the next few months feeling sorry for myself and wish that things were different. I want to try to get to normality as much as I can when I can and get on with my life. I also feel very fortunate and lucky that i have an employer who is allowing me to do stress-free tasks in my own time and at home because I know that some people who do get affected by cancer and other illnesses end up having to stop working completley which in turn affects their finances and stress levels which does not impact well on their health. There are charities out there that help and Macmillan are definitely one of them so please please please if you ever walk past ANY charity collection boxes, just donate at least one coin, don't turn your head the other way. I hate to preach it but when you see where the money is going and the difference it makes, it's such an amazing thing and it doesn't cost a lot. I seriously believe that I am going to get through this without complications and this is mainly to a great support mechanism and this includes great work managers and also you lot that read the blog as you clearly care about me and are not just on here for the embarrassing pictures haha!
Next blog post... The story of my mother....

My chemo senses are tingling

I've now been home since Wednesday evening and still feeling quite drained. It's really difficult to explain how chemo makes you feel as I honestly can't compare it to anything. My ball ache is not there anymore which is a good thing haha. The only problem I have this time round is I feel a lot more sick. I hasn't been sick at all but I'm constantly feeling like my stomach is a little delicate and it's making funny noises. The other usual side-effects are in effect too - heightened smell sense and snobbish taste. I have to be careful about what I eat as the smells make me urge. Another thing that really smells is my wee, but I don't know if it's because of my heightened smell or the drugs that I am taking. The drugs that I took home after the hospital are not as much in quantity but there's still quite a few of them. I'm trying to keep myself hydrated but I still hate going to pee as I have to pee with one hand and pinch my nose with the other one.
The only other concern is that I haven't been for a number two yesterday, and I am worried if I don't go today tomorrow will be really painful and it would be like another sharp nailed squirrel birthing experience. I've been told by the doctor that I have a tear down there which is why I have been in pain before when I which is now healing. I've been taking stool softeners but they do NOT reduce the size of the poo and do NOT make the process easier. What the hospital offered me these apparently really good sashes called Movicol which make you go... but the only problem is they taste like toilet water. I've tried to mix it  apple juice, squash but nothing helps get rid of the salty water taste. I don't understand why they give such horrid medicine to someone who is already feeling nauseous. I need to go and stock up on some fruit to help me out with this problem.
Apart from that I am all good. I am hoping as the weekend progresses I will start feeling back to normal and start taking my babies out for a walk.

Here's to hoping...

So session 2 is now officially done. I have to say that this time round has been a bit better. The anti-nausea meds have been upped as I've been asking for the jabs which help a lot. I've still been feeling really tired but the naps help the time go so much quicker. Also i managed to go home on the 3rd day and didn't have to stay the extra night so good news all round : ).
This time round I was put in a ward with 4 other guys. 2 of them were 24 like me and both had a sarcoma. One guy had ewings like me, and this is the 4th time he's had it. He first had it when he was 10, then 3 yrs and then 4 yrs later. He has had it all over his body and has managed to treat it every time. This time he's got it in the same place as me, and his tumour was even bigger than mine. Half way through the 6 sessions, they scan your body to see how the cancer is responding to the chemo. In his case it was doing really well and the tumour had shrunk a lot. Also his bone started regenerating itself so he might not need to have surgery, just radiotherapy. This has given me hope that I might not have to have surgery which would make the healing process a little easier and faster. I have to say it was nice chatting to other guys who I can relate to and I would hope that someone going through a same thing who is reading this can do the same. That would mean that I've done what I intended to do.
As I napped throughout most of the session there is not a lot more I can report on and I would like to finish with a message I got from my best friend's dad Wayne:
Dal is not his hair fortunately! ...In time it will grow back, remember yesterdays, hope for many more tomorrows but dont forget to appreciate Dal today.

Onto the next!

So session 2 has now begun. I thought I would quickly post a blog post before I feel to crap and start the long 3 day napping session. I’ve ended up having a good weekend with visits from my family and friends. I’ve always end up feeling great after seeing my friends for it was nice to catch up with everyone before going back into the hospital.

Before going in today, I had my wig consultation. Maddie came along with me as she knows my hair the best and is the hair expert. We were presented with a lot colours and as tempting as it was to go for a wacky rainbow afro, we tried to match it to my natural colour as much as possible. It was a little annoying that for men’s styles the colour options went from light brown to just black which was very limited. I thought that there might have been a few more shades of brown but I ended up going for black. I remember when I was younger, I ended up for some reason dying my hair black and there really wasn’t much difference and no one really noticed. My hair just looked a bit shinier.  The wig has been now put on order so when it arrives I will be going back in and it will be cut to whatever style I want. So I will show her some examples of what my hair normally looks like so hopefully it will not look too bad. I really can’t wait as I really hate wearing the hats. The baseball hats just make me look like a chav and the woolly hats are a little annoying as they are a bit hot to wear at the moment and also my head is like Velcro at the moment as it’s quite stubbly. Although my hair is falling out in places, some of the cells have already regenerated which means that it’s already growing back which is why it’s stubbly. Not on my face though which is great as I won’t have to shave for a long time :D. Oh the perks of cancer.

I am really dreading getting the chemo. Now that I know what to expect and how bad it is, I really just hate the thought of having it. Imagine the feeling of having to go to the dentist to have your teeth removed, you know it’s going to be painful and it’s not a pleasant experience. This is how I feel with the chemo, I don’t want to have it because I know how bad it’s going to make me feel. I think it’s even worse now since I feel really good in myself and don’t have any pain so I think why do I have to have it, but then I look in the mirror and I’m remind of what’s growing inside me. Well it’s not growing anymore and that’s thanks to the chemo. So just need to stop being a wimp and get on with it. There’s actually people who are a lot more worse off than me and I need to snap out of it and appreciate that I’m actually going to be ok and I have the rest of my life to look forward to. On Thursday I met a girl in the waiting room who was 19 and she was told that she only had 6 months to live and she is currently in her 9^th month and she was smiling and it didn’t look like there was anything wrong with her. I actually thought it was her sister that had cancer as her hair looked like a wig but I think she just had a bad haircut. I think that girl is such an inspiration and I’m always going to remember her and think how lucky I actually am. Yes I know it’s ironic saying how lucky I am but I am, this is not a terminal cancer, it’s just a long and difficult treatment process. At least I can plan my holiday for next year and think about the future without worrying if I will be there.  

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...