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.