Sorry about the lack of updates. I have been so busy over the last few months that I cant believe that I am near the end of my treatment.
I have now completed:
- 6 Cycles (18 weeks) of VIDE. (Vincristine, Ifofamide, Doxorubicine and Etoposide)
- 6 weeks (30 days) of Radiotherapy.
- 2 Cycles (6 weeks) of VAI. (Vincristine, Actinomycin D and Ifofamide)
- 5 Cycles (15 weeks) of VAC (Vincristine, Actinomycin D and Cyclophosphamide) with just one more to go!
I am doing and feeling really great at the moment and looking forward to that one final treatment.
If you have any questions for me or want to share your experiences please feel free to contact me as I am always happy to talk about it.
I would also be really greaful if you could visit my JustGiving page below and donate anything you can to Cancer Reseach UK. I will be jumping out of the plane in April to raise money for a great cause.
Thank you.
My battle with Ewing's Sarcoma
Personal diary of my thoughts, experiences and feelings while going through the process of discovering the cancer, treatment, recovery and survival. I hope to use this blog to remember the good times as well as the hard times and also to hopefully help anybody else going through a similar situation.
Tuesday, 26 February 2013
Tuesday, 4 September 2012
New hairdo, the sweats and more waiting!
A couple of days before the stag do, my friend Maddie popped round to cut Mike’s hair. When she was finished with his hair she asked if I wanted her to try and cut my wig. At first I was like 'there’s no point as I don’t think I would wear it' but then I thought OK let’s give it a go as I've got nothing to lose. I think I was just so disappointed last time I came out the salon when I first got the wig that I didn’t wanna get my hopes up again. So I washed it and put it on my head and she carefully dried it and tried to straighten it as much as possible. Then she cut it for over an hour. She cut it so carefully and precisely that she managed to get it really short but without any of the wig bits visible and she did a brilliant job. She cut it to what my hair used to look like and my style. I was so pleased with the result and I couldn’t thank her enough. Finally I feel like I could wear it and feel comfortable going out with it on. The real test was going to be the stag do as that is the first time I will be going out drinking since I got back from Canada.
The stag do was great. We got there on the Friday and the first night was going to be a chilled one, just so we can get to know the town. We were in Torquay and I didn’t wear my wig out the first night until I figured out what the people and crowds were like that were out there. The second night I wore the wig and I must say I felt so comfortable walking around and I felt like I looked my age and people were not staring which was my main concern. I’ve been really worried about people looking and staring and trying to figure out if it was a wig or not. When we were back at the hotel I asked one of the waitresses that was talking and joking with us to be honest and if she guessed I was wearing a wig. She seemed genuinely shocked that it was a wig and didn’t believe me. This was the best compliment ever to Maddie and a big boost of confidence to me.
On the stag do we also did a bit of quad biking and clay pigeon shooting. Quad biking was great but it scared the crap out of me. I just felt like I was going to overturn at every corner and smash my pelvis but luckily they are sturdier than what they look and feel. Clay pigeon shooting was really good too, I was a natural and that’s probably due to my Eastern European background haha.
The first week after chemo, I have figured out that my toilet troubles start exactly a week after the chemo and last for 5 days with day 3 being the most painful. I have also figured that if I take Paracetamol and Tramadol, it helps with the pain but the annoying this is, it makes me sweat so much. This is apparently called ‘pain sweats’ and are normal but I end up sweating bucket loads which is not normal. At the end of the day though, I’d rather have the sweating than the pain. This was the only major side effect which I experienced this time around so I’m happy with that.
The Thursday when I went back to Southampton hospital to see my consultant, I was hoping to finally get the results from my MRI and CT scans. Unfortunately my consults was not in and I didn’t get any results. One of the nurses that work closely with him, informed me that its very likely that I will be having radiotherapy before the surgery as Stanmore the hospital where I will be having the surgery have found it a lot easier to operate after radiotherapy has been performed. The only downside to that is, it’s a very tedious process. It involves going into the hospital every day Mon-Fri for 6 weeks and it might have to be Southampton rather than Poole. This would get so draining and frustrating. The plan is still not in place so I will worry about that when I know for sure. This decision also affect when I am going to have a new line put in as at the moment they will have to give me the chemo through a cannula which is not ideal.
So time for Chemo 5 now… the one that is next to last and also after this one I will be having a 4 week break rather than 3 YAY. :)
The stag do was great. We got there on the Friday and the first night was going to be a chilled one, just so we can get to know the town. We were in Torquay and I didn’t wear my wig out the first night until I figured out what the people and crowds were like that were out there. The second night I wore the wig and I must say I felt so comfortable walking around and I felt like I looked my age and people were not staring which was my main concern. I’ve been really worried about people looking and staring and trying to figure out if it was a wig or not. When we were back at the hotel I asked one of the waitresses that was talking and joking with us to be honest and if she guessed I was wearing a wig. She seemed genuinely shocked that it was a wig and didn’t believe me. This was the best compliment ever to Maddie and a big boost of confidence to me.
On the stag do we also did a bit of quad biking and clay pigeon shooting. Quad biking was great but it scared the crap out of me. I just felt like I was going to overturn at every corner and smash my pelvis but luckily they are sturdier than what they look and feel. Clay pigeon shooting was really good too, I was a natural and that’s probably due to my Eastern European background haha.
The first week after chemo, I have figured out that my toilet troubles start exactly a week after the chemo and last for 5 days with day 3 being the most painful. I have also figured that if I take Paracetamol and Tramadol, it helps with the pain but the annoying this is, it makes me sweat so much. This is apparently called ‘pain sweats’ and are normal but I end up sweating bucket loads which is not normal. At the end of the day though, I’d rather have the sweating than the pain. This was the only major side effect which I experienced this time around so I’m happy with that.
The Thursday when I went back to Southampton hospital to see my consultant, I was hoping to finally get the results from my MRI and CT scans. Unfortunately my consults was not in and I didn’t get any results. One of the nurses that work closely with him, informed me that its very likely that I will be having radiotherapy before the surgery as Stanmore the hospital where I will be having the surgery have found it a lot easier to operate after radiotherapy has been performed. The only downside to that is, it’s a very tedious process. It involves going into the hospital every day Mon-Fri for 6 weeks and it might have to be Southampton rather than Poole. This would get so draining and frustrating. The plan is still not in place so I will worry about that when I know for sure. This decision also affect when I am going to have a new line put in as at the moment they will have to give me the chemo through a cannula which is not ideal.
So time for Chemo 5 now… the one that is next to last and also after this one I will be having a 4 week break rather than 3 YAY. :)
Wednesday, 15 August 2012
Lots of tugging and pulling!
So 4th cycle has now finished.
Let's talk about some good stuff first! I had a really good weekend before chemo which is just what I needed due to feeling so crappy last few weeks. Friday I managed to do a full day of work and I'm working on an exciting little project. Work actually boosts my happiness as I enjoy new challenges and when something goes to plan its really rewarding. On Saturday I went Kayaking. I had to wear extra dressings on my Long Line to keep any bacteria away and I had to wear a wetsuit to keep it dry, which knowing what was going to happen is pointless I was so careful. Was Kayaking for over 2hrs and its a good way to stay active since I am limited to what I can do with my current funny hip. In the evening my best friend Mike came down from London and we had a BBQ which was great and I even managed to have a few drinks. The next day I went to visit some family and friends and had another good day. Overall, a really good weekend and it put a massive smile on my face!
Monday I was back in hospital for my 4th cycle. I've always dreaded this one as its not the half way through one, it's not the next to last or the last one. It's just stuck in the middle somewhere. On my first day, they took blood samples again to see if the bug has gone yet from my line. Turns out that it hasn't, my red line was still infected and there are not many antibiotics that can clear it up easily as its an ideal place for the bacteria to grow. The only solution would be to get the line out and put a new one in. This is not the ideal solution but looks like there is no other way. I was dreading having to get it out and getting a new one put it but i was promised that it didnt hurt getting it taken out! Little did I know, an HOUR AND A HALF LATER, and plenty of tugging and cutting they got it out. It was soooo painful, there were two doctors doing it, one hadnt of done it before and the other one was telling him what to do. Apparently, there is a 'cuff' which is like a sponge they out around the line and the scar tissue grows around it and that's how it stays in place! They have to cut all the scar tissue all around the line and there was plenty of tugging and lifting and cutting. Even tho they kept injecting me with local anaesthetic I still felt bits and there was lots of blood! So yea, not the most pleasant experience. But once it was out and 3 stitches later I was able to go home which cheered me up. Now that I know what to expect, I'm really not looking forward to getting the new line out it and later having to get it taken out. The new one will be going in next Thursday and I will also be getting the results of my scans.
Most important thing: only 2 more sessions to go!
Let's talk about some good stuff first! I had a really good weekend before chemo which is just what I needed due to feeling so crappy last few weeks. Friday I managed to do a full day of work and I'm working on an exciting little project. Work actually boosts my happiness as I enjoy new challenges and when something goes to plan its really rewarding. On Saturday I went Kayaking. I had to wear extra dressings on my Long Line to keep any bacteria away and I had to wear a wetsuit to keep it dry, which knowing what was going to happen is pointless I was so careful. Was Kayaking for over 2hrs and its a good way to stay active since I am limited to what I can do with my current funny hip. In the evening my best friend Mike came down from London and we had a BBQ which was great and I even managed to have a few drinks. The next day I went to visit some family and friends and had another good day. Overall, a really good weekend and it put a massive smile on my face!
Monday I was back in hospital for my 4th cycle. I've always dreaded this one as its not the half way through one, it's not the next to last or the last one. It's just stuck in the middle somewhere. On my first day, they took blood samples again to see if the bug has gone yet from my line. Turns out that it hasn't, my red line was still infected and there are not many antibiotics that can clear it up easily as its an ideal place for the bacteria to grow. The only solution would be to get the line out and put a new one in. This is not the ideal solution but looks like there is no other way. I was dreading having to get it out and getting a new one put it but i was promised that it didnt hurt getting it taken out! Little did I know, an HOUR AND A HALF LATER, and plenty of tugging and cutting they got it out. It was soooo painful, there were two doctors doing it, one hadnt of done it before and the other one was telling him what to do. Apparently, there is a 'cuff' which is like a sponge they out around the line and the scar tissue grows around it and that's how it stays in place! They have to cut all the scar tissue all around the line and there was plenty of tugging and lifting and cutting. Even tho they kept injecting me with local anaesthetic I still felt bits and there was lots of blood! So yea, not the most pleasant experience. But once it was out and 3 stitches later I was able to go home which cheered me up. Now that I know what to expect, I'm really not looking forward to getting the new line out it and later having to get it taken out. The new one will be going in next Thursday and I will also be getting the results of my scans.
Most important thing: only 2 more sessions to go!
Thursday, 9 August 2012
Half way through chemo
Recently I completed the 3rd session of chemo and I have to admit it's getting tougher. I was hoping that now I know what to expect from chemotherapy I would be able to deal with it better but it's getting harder. I've been feeling really low and down over the last couple weeks and I am not sure of the exact reason behind it. I don't know if its because of:
- Chemo - I'm starting to feel like it's never-ending. As I don't really have that much pain in my hip area any more I am just thinking why cant they do the operation now and get on with it. I am getting fed up of having to be put through crap when I am feeling OK.
- Anemia/No Energy - My blood count has been low for a couple of weeks now which is bound to make me feel weak and tired. I've been trying my hardest to boost my blood count by eating healthy and looking after myself but it's just not working.
- Side effects - Its just been one thing after another with the side effects. From painful toilet trips, to acid reflux, I've had it all in a short space of time. Just when I think what's next and a new thing does actually happen. It's bloody annoying and its really dragging me down.
- Side effects - Its just been one thing after another with the side effects. From painful toilet trips, to acid reflux, I've had it all in a short space of time. Just when I think what's next and a new thing does actually happen. It's bloody annoying and its really dragging me down.
- Low self-esteem - I hate that I am not losing weight due to the steroids in the drugs they give me and I also hate my baldness. Wearing baseball caps is not my thing and I am worried that people who I come across in shops and on the walk who don't know me might think I am chav who's out to mug them. I also dont feel confident to walk around bald yet either.
To top the wonderful last few weeks, over the weekend, last Saturday, I woke up with a high temperature of 38.8 degrees. I've been told if it ever reaches 38 to phone the hospital and go in immediately. I've also been told by other guys is that if that happens, you usually have to stay in the hospital for 3 days hooked on an IV drip and pumped full of antibiotics. The thought of this really depressed me even more as I had a weekend planned with my friends as I really needed cheering up. When I got there, they took lots of samples of blood, from both of my lines and from my arm. It would take 2 days for the samples to grow the bacteria to see where the infection has come from and they said that I would have to stay in till Monday. This was really upsetting as I did not want to spend any extra time in hospitals, especially as a week later I would have to be back in Southampton getting my chemo. The problem was, my blood count had dropped so low that I would not be able to get chemo as my blood was too weak. I could afford to be set back a week last as this would affect my planned trips for Sallie and Russ' wedding celebrations. Saturday, I felt so rough and my temperature just kept rising. It ended up going to over 40 degrees. At this point they didn't know exactly what was causing it but to be save they just pumped me full of antibiotics and IV drip to keep me hydrated. The antibiotics really affected my taste like the chemo and I felt like I was having chemo again as they gave me a drip over 8hrs/overnight. The following day, they decided to give me a blood transfusion. This was very weird and scary for me as the idea of being pumped someone else blood really freaked me out. I wanted to know where it came from and who. I didn't want it to be from someone dirty and unhygienic. Once I got my head around it, I actually became grateful to whoever did donate the blood as it was actually helping me and was going to make me feel better.
After the blood transfusion and later on Sunday evening, the doctor came in and said that one of the tests has grown a bacteria which has come from one of my lines and this seemed to have been the source of my infection. Once we knew what it was, and since my temp had been low all day on Sunday I asked to be discharged. I did not want to spend another night there. I honestly think that being in the hospital at the moment makes me feel worse than better. It's probably because I associate being in hospital with having chemo and making me feel crap. I had to sign forms that I was going against their advice but I just wanted to go home and be in a happy and positive environment where I would feel a lot better. I managed to get home, late Sunday evening and immediately as I stepped through the doors of my own home, I felt better. The following day I did have to go back into the hospital for another dose of antibiotics and pick up some tablets. I spent the next 2 days just taking it easy and resting. Come Wednesday I was feeling great and I even went back into work.I think the blood transfusion really helped bring my energy levels up. Since I was on a high, It was a good time to go to cinema. Unfortunately the film I really wanted to see was sold out... so I watched the new Spider-man instead which was amazing!! : )! Now just need to see Ted and Batman!!!
Today I went to see my consultant again. My blood was also counted and the numbers are great and much higher so I'm definitely having the chemo on Monday. After the consultation, I went to have my half way scans, CT scan and MRI. I forgot how weird the CT scan is. They make you drink some weird drink over an hour, you are not allowed to just down it. Then during the scan, they inject you with this strange stuff that gives you a heat rush and make you feel like you've wet yourself. Then I forgot how long the MRI scan is... 45mins. I actually fell asleep. At the end they gave me a copy of the CD of the scan which I have been looking at but I don't know what I'm looking at. I will just have to wait 3 weeks for find out exactly how its all going. Hopefully if its good news, it will give me a massive boost and remind me that all this pain and suffering is worth it!
After the blood transfusion and later on Sunday evening, the doctor came in and said that one of the tests has grown a bacteria which has come from one of my lines and this seemed to have been the source of my infection. Once we knew what it was, and since my temp had been low all day on Sunday I asked to be discharged. I did not want to spend another night there. I honestly think that being in the hospital at the moment makes me feel worse than better. It's probably because I associate being in hospital with having chemo and making me feel crap. I had to sign forms that I was going against their advice but I just wanted to go home and be in a happy and positive environment where I would feel a lot better. I managed to get home, late Sunday evening and immediately as I stepped through the doors of my own home, I felt better. The following day I did have to go back into the hospital for another dose of antibiotics and pick up some tablets. I spent the next 2 days just taking it easy and resting. Come Wednesday I was feeling great and I even went back into work.I think the blood transfusion really helped bring my energy levels up. Since I was on a high, It was a good time to go to cinema. Unfortunately the film I really wanted to see was sold out... so I watched the new Spider-man instead which was amazing!! : )! Now just need to see Ted and Batman!!!
Today I went to see my consultant again. My blood was also counted and the numbers are great and much higher so I'm definitely having the chemo on Monday. After the consultation, I went to have my half way scans, CT scan and MRI. I forgot how weird the CT scan is. They make you drink some weird drink over an hour, you are not allowed to just down it. Then during the scan, they inject you with this strange stuff that gives you a heat rush and make you feel like you've wet yourself. Then I forgot how long the MRI scan is... 45mins. I actually fell asleep. At the end they gave me a copy of the CD of the scan which I have been looking at but I don't know what I'm looking at. I will just have to wait 3 weeks for find out exactly how its all going. Hopefully if its good news, it will give me a massive boost and remind me that all this pain and suffering is worth it!
Tuesday, 31 July 2012
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.
Monday, 16 July 2012
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.
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.
Tuesday, 10 July 2012
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....
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....
Friday, 6 July 2012
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.
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.
Wednesday, 4 July 2012
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.
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.
Monday, 2 July 2012
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 9th 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.
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