Saturday, 11 June 2016

My final thoughts

So in my final post, before I get on to some of my final points about what this experience has meant to me, I want to talk about how things have gone in my final week of chemotherapy, especially as my hair has started to come out.  It is quite difficult to recognise your self in the mirror when you don’t recognise the new person that you have become. Guess it will just take some getting used.

On Tuesday me and mum headed for what is likely and hopefully my last trip to a hospital for the next three months. Thank fully the cancer centre was not that busy was I was able to give a blood sample pretty quickly, and then I got my blood results.

It’s quite weird to have no white blood cells and yet actually feel physically fitter than you did the week before, but that’s  one of  the many strange things about chemo.
One of the things which has been a bit of a frustration as this process has gone on, is getting  the information that I need but normally about a week or two later than I wanted. This appointment was no difference. Up until this point any conversation about my hair had very much been answered ambiguously. 

However frustratingly everyone seemed to be singer of the same sing sheet today. Now why I was not told this two weeks ago I don’t understand, but the approach of everyone I have dealt with seems to think it’s best just to drop the reality on me, just as I am about to be hit with it. For example  being told that day that I was expected to attend a follow up in two weeks, there had been no mention of this ahead of time.

But thankfully, there was still some ambiguity just to stop me from thinking I was actually getting talked to by people who has experiences with similar case to mine. Now that I had, had my last injection of chemo drugs, mine and my mum’s only quite simple question was when will I be fully recovered. As I am going, to Belfast we both want to know when will we be able get rid  of  the chemo cards. The response from two different health professionals was you guessed ambiguous. Any were between a week to two weeks from that Tuesday.  So yes my thermometer and my temperature charts will be coming with me to Belfast.

Also I know have follow up appointments for the next five years .That's my next 5 years planned out. Now  I feel like that's just the universe saying well you do like to plan long term.

Now to conclude as I come to the end of my treatment a couple of points I want to close on. 
Firstly I am very aware of how fortunate I am, despite what is written above, this blog would be going on a lot longer if I wasn’t so lucky with what  kind of cancer I was diagnosed with and how my body has reached to the treatment.

Secondly I hope my story can help, but I am also very aware and I hope you are to, my story only scratches the surface of a great many stories of people of my age who's life really stops.
I have had to take a break from life and yes the next 5 years will be a constant what if, what if,
But many people have to suffer a lot longer to get the same result and that is a cruel injustice.
Hopefully in the future, those cases will decrease and hopefully I maybe in a small way can contribute to that.

Thirdly massive thank you to friends and extended family who have either supported me or any of my family/ gf at this time. I want to thank my parents and brother for getting there 21 year old student back on a full time basis. Just when they were looking forward to getting a last break before I move back in to start at Birmingham.

Thank you to my gf, who despite third year nearly killing us both off any way has been as much of a constant as she could be for me.  It’s rare in a relationship that both partners have near death experience in the space of year. Its strange last year I was getting set to head of for camp and 3 months apart. 

To then head on to Poland while she headed off to the Netherlands.Distance for those of you who have chosen to do it, is never easy at the best of times and these past 6-8months have not been.  No one likes a bored boyfriend stuck at home trying to live vicariously through his girlfriend in a different country. But we are still standing and exciting for what our future will bring. Hopefully with less health  scares.  

Finally I think i want to conclude with one final statement.  A common word associated with cancer is the concept of a battle. And if you survive you have beat it, if you die you have lost.


I have not beaten this. I was never in this fight.

Your body just becomes a vessel containing one side of the contest whilst the medical team tries to hopefully pock and prod your body in ways so they can control and minimise the diease. Let’s say they are successful you haven’t won anything. What you have  gained is more time.

This disease has taken the next 5 years of my life, where I have to constantly plan my life around appointments. I have my life now but I don’t know this will be the case for ever because who really does know what tomorrow might bring. The treatment has reduced, not removed the possibility that this disease could come back. That is now my life time to get used to it. 

Thank you and I hope to never write one of these again for obvious reasons I hope.

Monday, 6 June 2016

Just when you think your out they pull you back in

So Friday overall was a pretty good day.  I thought it was about time to do the chemo thing of going cinema mid day. I had picked a film and it was showing at 11am, excited to be getting out the house for a couple of hours. However as we where meant it leave, my dad who googled the showing found out it was a parent and child showing.  So that was not happening. But my dad was still heading out to go and buy some tickets so still an excuse to get out the house.  However my dad also miss read something and they were not selling tickets that day. Not the most successful trip for both of us.

At the weekend Lesley pop rounds for a catch up with my mum on Saturday. Our next door neighbours had a party for one of there young children.   Being nice neighbours they invited us for the barbecue, my brothers decided to disappear and go climbing. Now I didn't want to risk it what with lots of young children being around and  decided not to go. 

 My dad however seemed to forget that and had said I would pop round.  Also spent the day working on applications, cover letters etc. Whilst I am happy with my plan for next year of going to Birmingham for my MA,  at some point I am going to need these to be successful.   I want to make sure I am confident with the process independent of whether o am successful or not.   

Saturday and Sunday morning I went for 5k walks, because I need to and want to test in a controlled way what my body can, but not being stupid. Sleeping with these drugs, has been none existent up pretty much everyday this week  I have woke up at 4/5am independent of what time I got to bed. Saturday evening was spent watching full metal alchemist on Netflix with Alicia. Whilst I am not a huge fan of anime I wouldn’t say I don’t mind it.  

The most difficult thing about my recovery, has been the length  of it. Thankfully as I am now into my final week I can try and plan life back in Belfast. I am looking forward to getting involved in Oxfam NI and getting back to works for Queens recruitment.  

 My general health so far has been pretty good, I am starting to question Is the treatment actually working. Because I at least associated chemo with my body being destroyed.  Then on Sunday evening my body answered my question.  I was sitting reading a book then ran my hand through my hair and took a lot out.  So my hair is thinning, but at this point as it is so early. 

Have woke up this morning and have not found all my hair on my pillow, but that doesn’t mean I won’t have that moment at some point this week.  Its also strangely tempting to run my hands through my hair just to double check it is still happening.

To conclude just so you don’t feel to sympathetic to my struggle I have tried to use this new development to my advantage. So one of things I did when I was back in Belfast for what I thought might be my final time was cancel my gym membership. Now of course I am going to be back in Belfast for a month and so I need to get that membership back to try and get into some kind of shape.  But as I have cancelled my membership, I would have to pay a 15 pound admin fee to get a new membership.   Now have I sent email about cancer to see if I can get round this fee maybe,
Does that make me a bad person you tell me.

Finally massive Congrats Hannah you did it when it counted. Everyone else who finished Friday congratulation and looking forward to celebrating with you people when I am back. Thank you Haris for lunch yesterday really enjoyed catching up.
 Also just want to remind you about Leslies campaign, raising money for Orchid male cancer charity. 

Thank you if you have donated so far and if you haven’t yet, please do anything one pound would  be amazing  https://www.justgiving.com/fundraising/Lesley-Byrne-1773

Saturday, 4 June 2016

Beginning to see the light

So as I write this, I can actually start to  look to the end of what has nearly been a 3 month process and it feels fantastic. Chemothreapy cycle take 21 days, I am day 12.

One of the constants since getting out of chemo, has been able to do a lot  of stuff with my parents, and having my family there to keep me grounded. This is especially at a time when my schedule outside of that has been pretty lax. For example me and my mum have been able to go for walks around the local area, we went to mcdonalds which was a first for my mum in about 25 years.

So when I talk of my family and Alicia keeping me grounded, during what I am sure you can appreciate is a difficult time for me  what exactly do I mean.  One of the daily routines round the dinner table, is just checking how your hair is going.  I think the fact my health as such not deteriorating help keeps us laughing. However one of the frustrating part of being around your family so long, is that its difficult for your family to not think of  you as permanently ill. When trying to organise things that takes place in a month and your mum is just warning you to be cautious that can be annoying.

Now from a more humours aspect there have been a few incidences. If I asked you to guess, what was the moment when you felt your childhood die, I suspect you might think it was when I was told I had cancer. Or another life changing situation. No for me it was when my mum made clear, that my family expected me to contribute on a weekly basis to the food budget, once I move back in in September start my masters etc. Now I am not going to pretend I am not expensive.

Just to mention my dad and brother have also contributed to many jokes about my hairs, how almost annoying it was I didn’t seem to be iller as they has expected worse.  One of the most difficult things for me, has been the fact I have not been able to exercise for  a very long time, so I am not in the best shape. Mention this difficult thing I am going through to my family and my girlfriend, comments about my weight are what follows.

Family right.

One of the most moving things that I have had the opportunity to watch this week was a documentary on the BBC about cancer I think called the Big C and me.  It followed the story of three different people, as they went through there very different treatment process. 

Watching it with my mum, I think was quite useful because unsurprisingly I was able to relate to what they where going through. It was a lot easier to try and explain to my mum, about the things like the conversations you have with yourself get a lot more morbid when you have a headache especially.

 However one of the most emotional moments of the piece, was following the family of the women who died, after her body was not able to defend its self from a bone marrow transplant. Her treatment had taken a very long period, and you could see in her face the toll it had taken but also how much she was looking forward to it being over.

Now I am very aware of that my reality and my perceptions are two very different. However the concept of mortality is something I had to accept because that’s what cancer in my head was associated with.  But the other thing which really affected me about her story, was the fact I have been able to meet many people who like her believed their treatment was coming to an end.  People who have known nothing but a hospital for 10 months, and to see her die really hit me.

Thank you to arran, also a family friend of mine is raising money for the Orchid charity which I am an ambassador. Would be great if we can get her to her target and beyond to help fight male cancer in all its forms.  https://www.justgiving.com/fundraising/Lesley-Byrne-1773?fb_ref=Default

Wednesday, 1 June 2016

Boredom

So since coming out of hospital, and getting a little bit more adjusted to normal life, the days this might surprise you hasn’t exactly follow by. As a result this is not going to be a very long piece, as to put it simply haven’t really got to talk about.  

Currently, just making it through every day remembering to take my drugs, checking my temperature trying to make the hours pass by until I get back into my bed at the end of the night is an achievement.

I also want to explain and give some idea of what exactly the physical feeling that comes with chemotherapy. Thankfully as time goes by,  the feeling that I was previously used to of still having the drugs pumping around my vains has gone.

It has just been replaced, and apparently will get worse, is just tiredness, aches,  pains and just accepting that basic movement eating etc just takes a lot longer. A mouthful taking between 20 to 30 seconds can be depressing, but am just trying to focus on the short term nature of it more than the frustration of my inability.  

That being said, one of the weirdest things that I have tried to fill my time, is that now  that now I am a "survivor". Exactly what charity should I be doing marathons/ runs for.  Never thought I would be writing that in a blog but hey unquie life experiences right. 

One of the most difficult things that I have had to deal with, but also get used to is as my video I hope got across a complete lack of interest or motivation in anything. It’s quite difficult when I have  things to do, but the concentration required is something I just don’t have at the moment. Being a dyslexic, it can be hard enough to look at an essay plan you wrote weeks ago and try make sure things make sense in your head. So having what has been termed “chemo” brain, is kind of just rubbing it in.

Thankfully though as this piece evidence, I have good moments and it is important to try and take advantage of those moments to try and get on step closer to completing my degree etc.  Whilst I am sure no one would judge me etc, for just taking time off during this period doesn’t really work for me.
The bank holiday weekend, pretty much came and went for me.  

Finton came home Friday from uni and it was strange trying to answer the simple question everyone friends, close family friends who I am meeting at the moment, “how was chemo?”.  Was great to catch up with him and talk about how things have been with him, as I and unfortunately my parents have been rapped up with  me in the last couple of weeks. 

Unfortunately as I said previously I probably will never be able to explain it to others, but I have to make sure that I take whatever insight I feel like I have gained going forward.

Originally when I planned and agreed to this chemo, was that I wanted to do this in Belfast mainly to counter act with the boredom that I am now facing by being in Belfast what with having some kind of a life there. Something I don’t really have in Birmingham as for the last two a bit years this has not been home.

Unsurprisingly, looking back now and with how I know I am going to be feeling in the next couple of days. Putting the responsibility for my health etc on my girlfriend would have probably been a disaster, if something had or goes wrong. Mainly because I could get a temperature, have a random reaction at any point which could be life threatening.


That being said, I think me and my mum will both agree whilst the time we are spending together is lovely that we are looking forward to getting sometime apart, where I don’t need to be watched. 

Quick thank you for the Dosters for coming round and joe for continuing to be someone who has made themselves available to me. Can't repay you enough man  Also massive thank you  to Leslie for all of her work raising money for Orchid. 

Also to all of my Queens friends who have finished, and will be sitting what would have been my last ever exam today, well done and hope to see many of you when I am back in town.  

Saturday, 28 May 2016

Chemo Part 2

So now that I am back home I want to try and get across exactly what it feels like “on the outside” as well as a few point about my final days.

So first of all would again like to say a massive Thank you leslie for popping by on Wednesday morning and bringing me some more reading material to keep me focused over the next couple of days.

However in the long term I think I definitely want to make sure I  get across exactly how this experience has effected me, as well as what it is like to be the healthiest of the sick. Because at the end of the day,  on this ward testicular cancer quite rightly is seen by others as just having a common cold. As I wrote about in my previous piece, when you are hearing stories of leukaemia, after still births, you can appreciate why people aren’t to bothered about how things are going with you. They are day to day, you are most definitely are not.  

 As the days go on, I was thankfully able to meet more young people and there families who unfortunately have had to make this unit home from home. As an outside both me and my parents were able to observe, I could definitely appreciate the importance of this unit just to help give families, a sense of community with other families, but also the support staff offered by  Click Sergant and Teenage cancer trust.

Whilst in a small way i wish i could develop the kind of relationship many patients and families have  with the staff, just to try and get that sense of being a part of something.  But at the same time i am of course very grateful i don’t. Wednesday morning was the first and hopefully the only time I ever meet the consolutant who has responsibility for my case. After having not the smoothest night, due in part to circumstances outside of my control, which I thought might lengthen my treatment being told everything that I was feeling, pain strange senseation, chest pain was to be expected. 

Would in normal circumstances be concerning, but when its chemo that just comes with the territory.  On my final night, i think i was out by about 9:30. And boy did i sleep. Any symptoms of thee previous night where pretty much there but manageable.  Work very hard  So Thursday morning, at about 2am my final chemo bag was finished. I then had a much more relaxing 4 hour sleep on cleaning fluids running through my body, then at 6 am ish my bag went off for the final time.  
Freedom is so close haha

Unfortunately there are a great many people who stories i have not heard, simply because in my short time we just haven’t crossed paths. And as I put previously, I  am not really in a  position to try and engage with people when they are at there lowest point.   But yet again i continue to hear motivating stories, that going forward give me much wider perspective when i talk about tackling this in the future.

The thing I think that it’s important to get across about the process I am about to go through, and also to help people have a better understanding of the process of chemo therapy. Strangely enough the hospital bit is probably the easy bit.  Because going forward my treatment, how my body reacts etc and taking care of those reactions are all on me and the family. Whilst in 2 weeks i should be done, this is probably going to be two of the loneliest and longest two weeks of my life. But I will still be on medication until the  end of next week, and  I constantly have to be aware of my temperature
Whilst I might be out  there don’t give you an emergency contact number for no reason.

So at the end of day 1 of freedom this might surprise you I am physically dead. Whilst I guess I feel how I expected to feel, but once you are back home and I don’t want to say everyone is getting back to there life and you are left sitting on your sofa basically waiting for your next round of drugs.
The other weird thing is how physically different  I feel. 

Your body does feel physically different I think it will take some time for me to get re used to what my body looks like without something in my arm, and not having a pumping feeling through my vains. I am also looking forward to the constant ringing in my ears of bells going off at all hours leaving my subconscious.

So yes I am basically failing asleep as I write this just in case you have't guessed. 

Wednesday, 25 May 2016

Chemo Pt 1

So the call came early Monday morning, and we had been told previously that once the call came in to head up as early as possible.  But of course once the call came I was hit with the hard reality, that  mums breakfast came first. So we were in no rush.

It was very strange leaving the house, with the same kind of feeling, with the same bags I normally use to get a flight. This was just another strange juxtaposition of many juxtapositions of this experience. So the first thing I did once I got to the end of the long corridor on level six in the QE was getting my bloods taken. Mainly so what ever they did to me might not cause me damage that my bloods suggested.  
We got given a tour, and I am despite having a couple of very long nights, am grateful to being on this nice energectic colour ward than if I was on an adult ward.  So before I was formally checked in I had a quick chat with a Doctor who I had seen for my previous big appointment on April the 20th. Whilst it is of course lovely to see a familiar face, this time not so much. Because when asking about how my academics where coming along, and I mentioned I still had an essay to write, she decided to just mention in passing, that I should probably hurry up because my brain capabilities post chemo might limit my abilities to produce academic essays. It would have been nice for her to mention this a week a month ago but ah well.

So I wasn’t  able to start my treatment for a couple  of ours so we went downstairs to visit one of my mums friend who was currently going through a much worse time than me, and was on the adult ward. Wow it was a massive difference to what I was lucky enough to have up top and am yet again grateful to be young.  The day from once I was set up on my drip was relatively uneventful.  It did give me the opportunity to go and  get talking to, and appreciate the fortuntate situation that I  found my self in.

 A lot of people on the ward have unfortunately been hear a lot longer than me, some people have stories, which began over 10 months ago. But along  with chatting with patients I have also if the opportunity has not been to detrimental to their working time, tried to get to  know the nurses.
 Mainly because of this I  have tried to get across how  fortunate I feel to these people. To some extent hearing these stories first hand, has  only motivated me to continue the approach I have  taken towards this, in trying to work out what will my lane be. So I can  make sure their lives are easier in  the future.

But that is why what I am is very motivating But at the same time, if you can’t appreciate their  subconscious,  not hatred but jealous of you, than your kind of kidding your self. Sure you had cancer, but as with everything in the live the levels are very varied.

So this might surprise you but my first night not the most peaceful.  Beeping noises do drive you fucking nuts.  I Slept about as well as u do. The morning hurts more, buts it meant to, chemo is not really a breeze. The other realisation I did have my first morning, as I was  heading  to read my book privately, I did have to stop myself. Because I will have two weeks to enjoy my books soIo once I am out, so lets not be an anti social git now.  So the slightly frustrating thing I guess about me only being on the  ward a short time, that for the hours I am hocked up to chemo, I  can’t leave the ward. I didn’t think I would feel trapped but on day 3 there it is.


So the slight bright sprak to my morning was having  a chat with Laura from teenage cancer. It was generally fantastic to hear about all the amazing support that the trust offers,  I did  because it is me get in some shameless self promotion, because whilst I can appreciate the fact I am a patient. I also want to make sure that when opportunities present them selves to make some else life easier I take them up on it.

But it was also fantastic to get to just explain who I was, to laura. I continue to find as the years have gone by opening up my life to explain who I am outside of this no matter what the circumstances can really lift your spritis.  So I was waiting with baited breath  for my first visitor on day 2 but was my dad late. How I am a adult with WiFi, lifes not that hard grow up.  The highlest of the day which I  didn’t expect coming in is how much visitor s mean. So a massive thanks for abi and liam and two of my mums closet friends for finding time to visit me.

 One  of the things you learn to appreciate  being the newbie, that not every small buble that gets passed the pump is going to kills you.  And just because you machine is bleeping that also does not mean you are going to die. Also it is a  little frustraing but as is the  nature of the system, that when you  are in trouble there are probably only about 2 out of the 7 members of staff on the ward who can actually do something about. However when its not your machiene just being able to put your headphones in can be bliss.  

In the evening it was really nice to just and sit and mingle in the communial area with the other parents and different  patients, but also gave my parents when they came into visit me the chance to mix with people and just chat. I also want to make a quick shout out, to say that I hope everyone has a similar experience as myself but the NHS nurses who work the most unsocialable hours really are saints.


So just to close off todays one unfortunately, but as I expected I was starting to get side effects probably related to the chemo. That meant, that once a doctors talked these through with me my process as been delayed hopefully only for a few hours but we will see.

 But in addition to that, due to some of the sypmtoms I exhibtied and this is a completely inside (if you have ever worked in an American summer camp), I had to answer a question I always hated asking the kids as part of the evening catch up list. 

Sunday, 22 May 2016

Going forward

So before being put on the sofa for the next two weeks I was lucky enough to get a final trip to freedom Sheffield.  I was heading up there for a day and a bit to go and see some friends, from university, from back at school and my girlfriend’s best friend. Ana  adam Mary kylie thanks for finding time.

You may not be surprised to hear whilst i am technically cancer free and looking forward to getting chemo out of the way I am not quite as fitting  fit, as I would like. My throat feels quite weird,  my chest doesn't feel amazing  and i am getting headaches.  So perfect chemo conditions.

So whilst I know there where many cool places in Sheffield, the trip was a bit of a world wind, of dark rooms and alcohol.  I did say I was looking for the authentic student experience. On Friday me and Mary went to the Cruzon threatre which is a lovely chain of cinemas mainly based in London, but has chosen   Sheffield for its northern expansion, to see our kind of traitor.

Early one Friday morning, once I got of the bus in Sheffield I got the news I only had one round of chemo. Which of course is fantastic news and means I will be able to get back to my “normal” life, but as the above suggests I am not physically feeling great at the moment. But I don’t think anything is related, so aren’t I just a lucky bloke.

So Friday evening I grabbed a drink with my girlfriend’s best friend, and her boyfriend for a fantastic chat. Often around new people I almost feel awkward dropping the word on them, but around people who know ahead of time then I can go for hours. It is quite interesting for me to be able to have these conversation, because having people directly question how it has affected my life helps me really puts what happens to me into perspective.

One of the questions or statements lets say, that was asked of me was it must have changed your perspective. I, being me for those who know me well, try to pretend that it hasn’t changed my life. Because sometimes in life doesn’t we all want to be unique and show we are different to the norm.   But if I am being truthful to myself it has. Because unfortunately you or more precisely I have not grown to appreciate a problem or diseases like this until you have had to deal with it.  

A very close friend of mine unfortunately has had to in her own unique way taken the journey I am just beginning. Early last year she was sexually assaulted, and rather than disappearing from the face of the earth, which she had every right to do. She has instead began to campaign on this issue in so many inspiring ways. She has had to deal with a great more than I have with this disease, and what she has done deserves a great more praise than anything I have gotten for how I am coping with cancer.

So whilst at this point I don't really know how I can try to emulate her inspiring approach, her example to me really means,  If I don’t do something I am wasting an opportunity to make an impact on people in the future who might be effected by this problem.  We don’t choice these issues, to have a first hand perspective on them. We also don't look for them to be what defines us in the eyes of other. But at the same time we choice to try and make it something that we want to help change. 

Tomorrow morning I hopefully will get a phone call at 8-9am, which means I can start chemo and don't have to kill the day.  Despite the fact I am in the  teenage ward, if there is a spare bed in the NHS it won't stay their for long.

Ever since the day I was born, and I was brain dead for one minute, I guess in a weird way I have continued to live on borrowed time. This new near death experience is no different, to how I have approached everything that has hit me before. Except this time I have a new platform, and hopefully I can make a bigger impact to those effected by Cancer. 

Wednesday, 18 May 2016

Difficult decisions

So on Tuesday morning I Took the morning of from school, partly because I had a few things to catch up on but also because the youth worker from clic sergant who was assigned to me was coming round.

At around 10 ish Orlando the youth worker from click sergant came round to basically introduce himself, explain what support I had on offer, and get to know us(me and dad who were in the house at that point) a little bit.  Whilst it was fantastic to have Orlando round, he did stay for about 1 hour 30. And I had somewhere to be at 12:10 haha. Orlando’s visit was also to allow him to get to know me, and to see how I was doing. I could also tell relatively easily that when Orlando said, he had spent the majority of his working life, supporting kids between the age of 7 to 16, but I appreciated this not being a solemn chat.

That being said it was a very strange conversation, but actually not that unfamiliar to me. It was quite similar to the psychiatric questionnaire you are asked at the start of a Camp America interview. In both cases the person across the table knows nothing about you and so needs to ask you, and be able to rule out as many possible personal situation or circumstances that fortunately for me couldn't be further from the truth. Eg mums in a lot of these pictures,  where is she at the moment etc. 

The other thing that this chat has made us think about, and cause minor arguments, is as with everything money. I continue to be grateful every day for the kind of institutions that makes up this country I live in. I am so fortunate that there are organisations which can financially support me and my family during this difficult time.

But as has been pointed out to me, whilst there is a lot of money available, it doesn’t mean I have to take all of it. Unfortunately we live in a capitalist world which leaves many people much less well off. Also charities do not have a bottomless pit of money to support families.  So whilst that money is there for me, wouldn’t it not be better for me because of our families financial situation, to leave that money so the charity can support families in the future that are less well off.  But at the same time why should I make a decision to differentiate my self from other people, who are going through the same disease as I am.

It has been quite funny working back at my old school, whilst my brother is in his final year. As I suspected, during my first class helping out in year 11 the only thing the kids where interested in was, were I as clever as my brother.   That’s about a exciting as the conversations got, mainly because it has been such a long time since I did a lot of the stuff they are studying I am not a massive help. The only way I hope I have been of some us is just offering advice, about how to best revise for the exam that is taking place in an hour.

 So yes the teachers must be loving having a teaching assistant that they have to double check everything he claims.  But the one way I hopefully have been so some use is marking. Something for the CV I guess. 

So I am not just back at my old school out of the goodness of  my own heart. There are also some financial benefits, Wednesday afternoon I invigilated my first exam. Now I have done many boring things in my life, from ball crew training to practising the same movement during Karate training for 30 minutes. But this came close to being the most boring. Being my first time I was a little nervous to not do anything which might mess the exam up in some way. Thankfully I had been sensible and wore comfy shoes ahead of time so at least my feet wouldn’t die on me, but also so when I walked I wouldn’t be distracting people.   

However some higher power was against me on that day, because the stop I choice to sit down just so happened to be some very squeaky floor boards if they were stood on. I have never felt more self-conscious in my life. 

One of my other personal aims for the weeks, so to try and get my first “success” as a ambassador for the Orchid charity. So thankfully after invigilation I went  to have a sit down chat with the person responsible in the school for  all the PSHE education side of things. Thankfully she was really receptive to the materials I had to offer and I think me offering to present it, helped to seal the deal.
One school down now the world………..


Thank you again everybody am going to try and get one up before I head into chemo on Monday but lets wait and see J

Tuesday, 17 May 2016

Perspective

Before I get on to talking about how thing have been I want to share with you something that has been bothering me for the last couple of days .

One of the most difficult things our generation faces, as BA students is that we are constantly told firstly about how easy our life is, but at the same time we are told we have to do more outside of our studies.  In order to get a job you need to be noticed, and to be noticed you need to be a part of outside organisations and charities. Is it just me or are we all in a CV hunting race.  Where every single volunteering or charity thing, is put in the context of how great it will make our job prospects be in the future.  You realise that you are doing things to do things, not because you are passionate about the project. 

When you are talking to someone from a charity, about the work you can do for them and you think the conversation is in the context of exposure,   and they are concerned about the life you might be able to save with your work someone is not really in the write frame of mind.  That has been the weird thing.  That this time in my life is that at when I am approaching organisations and publication, I am starting to question if I am approaching these people for the right reasons.

Whilst I am going to carry on and will continue to get this issue in as many peoples especially men's minds as possible, I need to remember this needs to about saving people lives first and foremost.

So the last couple of days, have been slightly uneventful. Saturday I spent a couple of hours doing some EU campaigning in the local area. I have always found it difficult, even before this whole experience for me to just go and approach people when it’s not in an controlled setting.  I did however have a slightly awkward moment, when I meet the head of the national campaign.  I introduced myself thinking he was just a volunteer.  I then asked him, how did he get in to this, local politics? He then went onto explain he was the head of the West Midlands campaign for the torrie party at the last campaign.   

Saturday night was Eurovision. It was fantastic to be able to remember exactly how much fun Eurovision is in my family's household. Eurovision has always been a thing since we were young and it is a tradition which I have not been able to do for  the last two years.  That being said It did suck to not be out with Alicia and in Belfast. She went on a night out with a load of friend in Belfast.  It was especially depressing to me, the following morning and she was still drunk from the night before.  I was of course really happy for her because we both needed a night out but also massively jealous I couldn't join her.

Fin disappeared back to Bristol on Sunday. It’s funny to think when I see him next I am going to feel alot more like death .
On Monday I started my week helping out at my old school. It was quite weird to walk around  the school helping out dressed up as a teacher.  It was fantastic and a bit weird to catch up with teachers that I have not seen in a number of years. But one of the weird things that I continue to do was self-censor. I still found myself when being asked why I was back covering myself by saying something like “had some time” “back from university”.

In the afternoon  Dad kept me company heading to hospital was nice.   One of things that I have heard a little bit from people who have read the blog, that just because I don't mention people, doesn’t mean that they are completing locking themselves in there room during this time.   Thankfully it was pretty uneventful, the first appointment took about 10 minutes, but then I had another 2 hours to kill before my CT scan. This meant I didn't end up being able to leave the hospital till around 7pm.

The evening was spent down the pub. 

Saturday, 14 May 2016

Why I continue to talk

So this  has been a relatively unproductive week but again has allowed me to continue to try and work out new ways I  help this new cause I guess I have “joined”.  Wednesday was a bit of an odd day, I meet up with a friend of mine from college who I hadn't seen in about 6 months. Now  excluding, her being forty five minutes late and then leaving after 30 minutes it brought  home something to me about why I am choosing to approach this current stage in my life as I have.
She unfortunately suffered from depression during her first year which completely derailed her university time and is now looking to start again at a different university.   But the thing which concerned me was that she had not had the confidence to tell her family about why she had left university.  

Whilst I can in no way understand her position because everyone’s issues are their own, but at the same time it brought home to me how lucky I am to be in my current family situation. 

So this current situation, to me is actually not that different to how I have tried to approach the other issues I have lived with my entire life. Being dyslexic, autistic, is often something that carries with it a large amount of often in correct perception.  I hope in a small way, my publicness about my life in this form helps to change some perceptions associated with the word cancer, autism etc.   But just to be clear I take this approach not because i am brave but because to me it makes no rational reasoning why not.  But also I am happy to talk publicly because I am fortunate enough,  to have a family atmosphere which has allowed me to be confident enough to do so.

There are a couple of things I am continuing to try and keep on top of, as I have the time. Firstly is continuing to work on job applications. Whilst I am very happy with hopefully start my MA in Birmingham in October, I think its important mainly to keep me busy to continue to work on cover letters etc. Because I want to make sure when the applications matter I know I have not wasted time getting practise in, when I have the opportunity to do so.

The other thing I am going to try and make sure I keep up as I have the time is cook. As Alicia knows I am not the most adventuress cook, but I thought no better time than now.   I would like to thank you my brothers and dad, for looking like they enjoyed my slightly over cooked and terribly portioned stir fry.  A final thing I am looking to make sure I keep doing, at least well I can, is go to the gym. Admittedly, my trip on Thursday I was more concerned about avoiding getting a heart attack then pretending I am honing my athleticism.

Friday was a pretty active but long day.  When you are not sleeping well, deciding to make a 9 am bus for a 2 and half hour drive to London may not have been my brightest decision, but we live and learn. On the drive down I couldn't work out why I had really terrible headaches, then I had a coffee and realised that I was having caffeine withdrawal oh the joy.  I was done in London for two primary reasons but also to do some tourist stuff.

The main thing was to head to the offices of a Male cancer charity called Orchid.  I was there to discuss, their ambassador program and how I might be able to help. The first thing was that it was quite off to be in the office of a male cancer charity and for it to be almost entirely staffed by women. Literally just mean the optics where quite funny.  So going forward I am looking forward to acting as an ambassador for the charity, in Birmingham or where ever they need me. I am looking forward to helping to advocate and raise awareness of male cancer in whatever realm I am allowed in. Birmingham university sabbatical officer will not know what’s hit them.

The second reason I was down was to meet up with a friend of mine who was visiting from the Philippines with his parent. We first meet early last year, at an international festival in Norway.  I tried my best to help his mum out on advising on exactly which department stores on Oxford street are the best. I think I got away with pretending I knew what I was talking about. It was fantastic to catch up with him, because he is a really well travelled and well achieving guy who is changing the world. We are both graduating this year, but with slightly different options he is heading to silicon valley I am heading home.

 Whilst I am very much just trying to focuses on the now, and I am in no way close to him, but sometimes its nice to be reminded that there is a world out there and  it is possible for me to go out in my own small way to change it, once this period of my life is done.

Finally, just because I probably haven’t written this enough, but thank you to my brothers for continuing to keep my ground throughout this process.  It is refreshing that when people are describing you as brave, and saying how inspiring you are to be reminded that I still suck at washing up. But seriously this has been a difficult time for all of us, but having them be prepared to give up part of their free time in considertion of what my needs might be during treatment is heart warming.


These last two and a bit years I have not been around probably as much as I should have as the older brother. But I am eternally grateful that when I needed them they are here for me.  

Wednesday, 11 May 2016

Take the good with the bad

So over the last couple of days we(me and Alicia) have been able just to take some time and relax and hopefully re gain our health, has allowed us and me to think a little bit.  It has been extremely difficult thing is trying to continue some kind of normality in a relationship, where you keep seeing each other off at airports.

The frustrating thing is that often you kind of look to find some kind of normality in the relationship, and get back to some kind of normal life you wished that you were able to have.  Because the tough thing about this,is that a relationship is just that between two people, so trying to get back to some kind of normality is difficult, if you partner or myself may still feel like this is an odd time

We have been dating for over a year and half and unfortunately we have spent about 9 months of that time apart. 

Whilst in reality this means it will maybe only a month or  6 months, but my last year had very much been leading up to enjoying some sense of stability in my life, with my girlfriend by my side.   Pushing my schedule down the line does not really relate to my relationship, just when you think your long distance struggles are coming to an end, to have them extended again is about as depressing as I have felt in a while.

We are both at a point where we are coming to “real life”, and we thankfully both have dreams and both have aims and I don’t think either of us should be expected to change our life at the age of  21.
Coffee has continuously though out my university experience been a great way to just stop and  think and catch up with people who are my friends but I don’t have the time to see. So Monday I  got Alicia to a good friend of mine throughout my seven years of school, but also it was nice to us to be able to talk to people who were not my parents or just each other. 

I was able to get a few things done before Alicia head back to Belfast. One of the thing I enjoyed, was being to show her around my old school and give her some idea of the place which shaped me for 7 years. But also to show her what I school that does not have its own field look like.

Yesterday my Guardian article, got published and of course it is something I should celebrate the exposure it gives to me personal to become more of a voice on this issue, and today I may be involved with a MacMillian project. Some one reached out to me over facebook after reading the article to see if I would be interested in getting involved. Reading the comments I also noticed some comments had been deleted, so yaya I got trolled feel some important, that someone would take time to troll me. 

But also I hope it can help other people going through dealing with the disease at mine or similar age to me.  However I am going too be completely honest and for anyone who has written anything for a published newspaper magazine etc, which are editors.

What you read was to some extent my voice but it really wasn’t. I hope you can appreciate from reading my blog that some of the grammar and structural issues which were in that piece I don’t do. I have dyslexica, and having to work on my ability to write as been a constant struggle in my life. So I hope you can appreciate my frustration when people are reading something they believed I put together, which is not great.  In addition I am at a point in my life, when I am applying for jobs when people  google search me and see the style of that article I don’t think it sells my writing ability well.

Also whilst I can appreciate from a larger perspective that being a white male heterosexual student in the real world is one of the most care free existences in this country,However a few things. 
   
But unfortunately I would not consider myself that, and if you know me well and have over the last few years hopefully will appreciate that, what that word suggests, lazy uninvolved, having an easy life, coasting is not how I would describe my “student experience”. Excluding all of the normal stress and strain of being a undergraduate, being someone who is dyslexic studying a word based subject is a struggle. I am also autistic, so whilst all of my concerns are in my own head, still doesn't make them any less of a constant. 

So Alicia headed back to her new normal in Belfast, with a lot of time and I am praying a ton of opportunities ahead of her. I have probably put this before, but I am not comfortable with the fact Good byes are our normal, no one even cried this time. 

This disease has opened up a lot of door, for me to help others where I can. I have always tried to help where I can and hopefully the opportunities opening up to me will help me do that in a new realm. However if I had to choose I would prefer to that I didn't have any of it, just for some chance back at normality. 

Thank you again for reading.  

Sunday, 8 May 2016

North South East West

So on my final day in Edinburgh was thankfully was relatively un eventful. It was a long day, my grandmother decided we were going to get breakfast at 8:30 the joys. 

Surprisingly Even our health for the first time was not terrible.  It was pretty much just a day of killing time, so we thought we should take in some cultural of Edinburgh. Originally we had planned to go see a mid-summer nights dream at the Kings Theatre, but we missed the start. So to instead in the hope of matching the cultural experience that comes with seeing Shakespeare live.  We went to horrible histories at the Playhouse.

Yes before you ask it was just us and 7 year olds. The performance was fantastic, in addition if you know me you know I love Sing along. Alicia not so much, I think she was just more releved by the fact we(she) had chosen seats despite the place being as empty as you would expect for a 1:30 performance,  we couldn't be seen.

Which meant ever time I put my hand up to volunteer to go up on stage they couldn’t see me. The rest of the Afternoon was relatively relaxed, we of course would of loved to try and get more done in Edinburgh.  But as we had to leave at 6, in order to get a lift rather than having to get the bus we did not have a lot of time to work with. 

So to pass the time and to make up for my grandmothers rather questionable Wi-Fi.  We settled on a coffee at Starbucks, on Princes street.  To kill time we or I suggested for some reason wouldn’t it be fun if we both created tinder accounts and see how many likes we can get. Looking back this may have been a mistake for two reasons.

But I have come to remember very quickly what a dark place “online dating” can be.  So both of us have been on since Friday, guess who got more likes. Now of course Alicia is gorgeous, kind of why I am in to her.  But the level and the type of messages she has got is hilarious.

Now unfortunately I am starting to have very bad luck, travelling on Friday in the last month. London was delayed by 3 hours. So surely, I  would be a smooth flight back right. The minute we walked in, we saw our place had been delayed by about an hour and half. So we did what all travels do when faced with a lengthy delay in an Airport, we found the nearest bar and settled in.  Eventually we made it in at about 12.

 My morning started relatively early for a weekend (7:30am) as i had a lot of things to work through, which I wanted to try and done sooner rather than later. No rest for the student who really should learn to have a break.

Our coach to Bristol was at 11, Alicia may or may not have only woken up an hour before hand but we made it just. Once we made it Bristol the walk to visit my aunt and uncle was relatively smooth, but I feel like it brought us close together as couple.  If you know Bristol you know it has a lot of hills. Our walk was not different and Alicia not being a big fan of hills, explained during the walk exactly how many different ways she was going to kill me for making her walk up this hill.  

We did of course stop on the way, to make sure we did not arrive as guests empty handed.  It was a great break for me and Alicia and I really enjoyed being able to get to see my cousins, who are 7 and 18 months because unfortunately I have not been able  to make as many visit  as I would like.  What with being a cross a sea and all.  Hopefully going forward I can become more of a constant, what with being back in brum and all. That being said family on my mum’s side has always been less of a organised constant more of planning on the fly kind of thing.

Getting back it was fantastic to finally get a chance to look at some of the parcels, which I  picked that morning but didn’t have the chance to look at. Currently any post I receive is a mixture of medical stuff and care packages. This was not different. I had two parcels, one from my auntie in Canada, one contained my next round of led tasting radioactive flood.

This Sunday has been a nice simple no effort day.  This year has continued to teach me, travelling is fun , but travelling takes it toll.  That being said me and national express are starting to develop a very personal relationship.

So it was a nice break to be able to relax and enjoy just getting some admin stuff. People that know me know that i love my admin.  Alicia disappears on Tuesday, and it will be weird to go back to some kind of normality.   Although I am back in the capital Friday, so I guess not that normal..

Its going to be weird to have a week of no test and having to get back to working towards the future.  But i have in some small way been doing this for the last three years, so i am maybe starting to enjoy/ get good at it.

Thank you again for taking the time to read this. 

Friday, 6 May 2016

Any news is no news

Whilst being isolated from the normality of student life is really depressing, being able whilst I still can to travel is a great and healthy change for me and my family.  One of the best thing about being able to get up to Edinburgh, is being able to see my grandmother and her husband.  Not only because she is a great laugh, but also because in an amazing city like Edinburgh, everything you want to is visit within walking distance.

After a relatively uneventful first day, during the night we meet up for a couple of drinks with a friend of mine from down the end of the road. It was great for me and Alicia to be able to talk about the last month or two for both of us, as well as talk about the difficult toll the last year has taken for both of us.

Also thank you Rohanie for showing me and Alicia, Edinburgh students can have perspective about what people think, and often have evidences to support,  the perception that student come here don’t really understand the real world. 

On the 4th on my second day in Edinburgh, a couple of things happened which made it into a very long day.  In the morning after breakfast me and Alicia got a photo shoot done which my grandmother paid for.  Whilst it was a lovely experience it was also something that we did spend a lot of the time laughing through.

There was also the inevitable question when you spend 40 minutes with someone and you tell them you are a student, why are you here.  Again unfortunately whilst I say again and again about how public I am happy to be open about my current situation, I also know when not to make a situation feel uncomfortable for me.

Because I could have told him and he might have not batted an eye lid, I think that’s one of the odd things I have found about this, that I am almost more conditioned to feel awkward saying it for other people. For me this is simply because of the association that the word comes with. Despite the fact I have had many incidences where I have been around people who I thought didn’t know, did know and treated me absolutely no different.   

The other big news of the day which came as we where looking around a interesting art exhibition called Summer hall, was that I got my blood results back. I got the all clear.

Whilst this is obviously fantastic news, but I continue to not really feel anything.  Frustratingly the last couple of weeks have taken its tool, my head still hurts and I still feel like crap, you don’t really feel like celebrating when you are still in pain. In addition I am still getting chemotherapy and I knew that I would be getting at least one round no matter what me blood result is.

 In addition my head  which continues to be a concerned of mine, is frustrating because I really don’t know  what it means.  When you are seriously questioning whether or not you have a brain tumour is unfortunately a new normal that currently I am at 50% of being true till chemo.  In the afternoon in addition to the visit in the morning we went to the filmhouse cinema is an amazing independent cinema,  we went to go see  a film called our little sister from Japan.

Day 3 In Edinburgh whilst originally being planned as a busy day of activities turned out to be a little less so.  Unfortunately Alicia has picked up/ developed some kind cold. That has been the most difficult thing about the last two weeks is that both of us have had to deal with  a lot of uncertainty and stress.

Unsurprisingly that has led us to feeling like absolute crap. So instead we settled for a day of staying around the university, judging if we had anything better at Queens. Unfortunately outside of the library they pretty much have us beat. Well apart from the fact we went to see the results of our photo shoot of the day before, and wow. Some of them where actually not to bad, but some of them will never be seen in the light of day. The weirdest thing about looking at the photos, was that it was set up with a large sofa and a big screen rather than simply looking at the photos.  In the evening we went out for a lovely dinner which allowed my grandmother to continue to inform Alicia of all the funny and  embracing things that me and my brothers did when we were younger.


So my next blog will be me in someway getting back to normality before chemo begin.  

Tuesday, 3 May 2016

Count down begins

Friday was my final day of sympathy coffees, and seeing people for one last time before I go through therapy. Friday night before going for drinks me, alicia and her best friend ana who has been visiting for since Wednesday went to a place called Mollies Yard for dinner. Me and Alicia  had been trying to get a table at that place since we had got back to Belfast, so being able to close out my week getting a sample of the Belfast high life was fantastic.

We could also tell they don’t get students in there often, when the waitress asked if we where celebrating something.  Felt like it would have been awkward to go with celebrating the end of my last week because I have cancer. Ana saved the awkward moment by going with celebrating the end of mine and alicias degrees.

Friday night was a small fencing social, which was a nice way to go out getting to catch up and talk with a few people who have known me from the day I walked through the door of the gym during my first week at university to seeing my leave.  That being said it was in a bar with some pretty loud music so we weren't exactly having massive groups chats.

One of the weird things, from that night and a few others that week,  was to be in a  social setting and to find and often remember the fact that you are not the centre of attention, of everyone's attention.  Because it is important, and I am getting better at this, at having perspective on the fact yes your life sucks at the moment but everyone still I hope have a pretty good life they are going to talk about.  Also who wants to talk to the cancer guys  when you can talk to someone else. 

But anyway Saturday pretty much came and went really apart from getting a really fantastic breakfast at a cafĂ© called black bear on the stranmillis road the highlight. Saturday night  was fantastic, for me and Alicia to get to reconnect and catch up with two of her old house mates. I know this is a common theme of this blog, but when  you can take the  time to just let the conversation follow, enjoy it because unfortunately it is not  something we do often enough.

Going back to Brum was not as difficult a trip I thought I would be. I think the fact I managed to get my last boojum helped the transition.  Bank holiday me and Alicia joined my mum having the joy of getting a dressing gown and slippers sorted.  This might surprise you but despite having cancer my mum was not prepared to get my the 50 pound David Gandhi silk dressing gown. I was heartbroken.
The other item we had to get sorted was body washing stuff. As my skin is going to become weaker I am going to need to be using stuff, for people with sensitive skin babies.  One of the realisation I did have whilst we were out was really wondering what kind of kids am I going to be around in the ward, I am probably going to get to know people whos cancer might be terminal.

Whilst I am scared  of what my future might be, I hope  I am as aware as possible that whilst this is a difficult condition that has messed up my life, it is only in the short term and I have a 95% survival rate that I am going to hold  on to. Hopefully I can be of some help to people  who are in a worst place as me, because as  I say often if I can help I will. 

So Tuesday whilst I never thought it was going to be a complicated day you  can be the judge of that. Me and Alicia had a 1:05 flight out of Birmingham to Edinburgh, but before that I  had  to get more blood taken and do a sperm donation.

This tight schedule meant Alicia got to join me in the cancer centre lucky her right.  
It was also useful having her there because I had to go and give my sperm sample, at the Birmingham Women’s hospital. There was a strange irony on two grounds, firstly returning to the place which brought me into the world.  Secondly I and Alicia have now gone into two women hospitals in under a year.

Thankfully before we went in to discuss it with the nurse, we both decided that if I was to die the Alicia would not get my sperm to have my children after I die. By the way we had to have this conversation because people have done that.

It was also made clear to me, that I would not be able to give my sperm to my brother. Again people have done this.  So yes I know what you all want to know about, how a man goes about giving a sample. However I will spare you the details and just state, that I was supplied with a binder of lamented material, to help the process along.

You’ll be glad to know the process did not take too long.  

So I am currently in Edinburgh looking forward to a couple of days in newish surroundings,  getting  some culture and hoping  this cold I have been dealing with, from the stress of last week.

Thankyou for all the feedback, hope you guys are stilling enjoying this. 

Friday, 29 April 2016

Admin, Admin, Admin :(

So today (that being Thursday) was the first time that I actually felt like I had the opportunity to sit down and talk to friends not only about me but also generally about university. It was a refreshing change to be able to finally talk with friends and look back. University has been extrememly difficult, I have had some amazing highs but I have also never felt more depressed before.

I have learned that whilst many people have great intentions, they will do things which makes your life more difficult. Yes anybody over the age of 21 who has graduated, just indulge me on this deep and meaningful retrospective.  I didn’t go into therapy just cause I wanted someone to have a chat with, that being said one of the thing I have required often at university I have really needed and not had someone just to chat to.

One of the fantastic opportunities about this week was being able to attend my final debate at the Literary and scientific debating society.  One of the oldest societies at this university. Not only was it the place I really got to know an interesting and attractive women, who over a year and a half later still doesn’t seem to be tired of me.

It was on a trip down to Trinity for a debating workshop, that I made what I have been told (by her) a terrible attempt to ask if she was interested in a more serious thing. It involved my facebook profile relationship status, I will say no more. But this society has really helped to grow as a person in confidence at public speaking, and in my academic life, to create a clear and coherent argument.

Yes mum and Mrs Morris I got there eventually.

Some of my best experiences at university are because of this society.  I do not get to leave with some fine final speech, walking off into the sunset  but more often than not in life when do you ever.7

Unfortunately there was a lot of things I planned to do like join a campaign event for Oxfam which has been a massive part of my university life. Will miss my Qub Oxfam family, I am only sorry as with so many things to not have been able to take great advantage of it.

The other thing that I wanted to do, was do one final tour on behalf of my universities UK admissions department. Since day one of first year, I have worked  to promote what I still believe to be a fantastic opportunity that this university can bring to there life.  Being able to every week of my university life, to meet new young people and their families from all over the UK to hear their stories and hope that my story can in some way help to shape there’s.

As I come to the end of the week, another sad aspect of this week is I don’t really know when I will see many of people that I have come to consider friends again, the world is out there and our generations more than ever have got the skills to travel and see it.

Today is the day I hand in my dissertation, despite it being something which is almost talked about in mythical ways.  Yet I am handing in two very bland looking mini books, with an attached cover sheet because I being a dyslexic, did not read in the module guide that it was needed.  In addition to that when I looked to hand in my copies, the office refused to take them.

Because no one had told them, that they would be receiving thesis this semester. So like I said it was never going to easy for me. Outside of that the last day of  the week, also involved a lot of stressing waiting on emails, to make sure that the forms I where going to hand in where correct.  Considering this process began at about 10 am, you might be surprised that I was not responded to or confident with what I was stating until 3:30pm.


So that was Queens, my next post might be more retrospective but not sure yet. 

Thursday, 28 April 2016

Times up

This week has been a really hectic mix of seeing lecturers, getting paper work finished, getting in as many formals as a man can in a week, and trying to fit in be able to spend time to do things you can on the cheap like going to the cinema for nothing.  But one of the things I am trying to do but failing is I am finding it Difficult to be able to have perspective  on being able to take in for the final time being a student at this wonderful university of mine.

It is especially difficult because despite trying to approach this as my last week to some extent my time has already been and gone. A last week or a final week should be something you live to some extent normally. I don’t have that luxury, my house which I have come back to I am not living in, I am staying there bit of a difference. But as with most things your time comes before you feel like you are ready for it and I guess this is just one of those. I wouldn't be living my normal life trying to get in as many meet ups as this week.

Many of you know when you come to the end of something like school or college or university, ideally you want to be able to look back with your peers and talk about what we had. But the difficult thing about  this is  that I seeing my friends for  the final time yet all I am talking about, is my current condition. Hopefully when graduation comes I will get my opportunities to say my final good byes to the academic staff who has helped me get through the last three years. Whilst I won't be able to do these good byes along with my class friends, this is my new reality so time to get used to it.

But any way back to the fun part of this week and the reason why I came back in the first place, apart from to see my gf again J end of year formals people.

The first formal was at a place called the Ulster Reform club, one of the strangest experiences of the past couple  of weeks is being invited into “clubs” which the outside world is not aware of them being there. The other one being the Oxbridge club in London.  Minus the whole cancer thing really living the high life.

There is a lot of people who because of my first term travels, I have not been able to reconnect with or in some cases try to bury/ resolve any previous difficulties that I might have had with them. When you get involved as I have with societies and you work with people closely things can get stressful and things take place and are said in the moment of trying to organise events and run the society which you regret looking back. By the way I am in no way not attaching myself to that statement because I did.

The second formal which was the Politics, International Studies and Philosophy school formal took place as it has for the passed three years in the great hall.  It was fantastic for me to get to see so many people who in some way have become a part of my university experience, and do a kind of goodbyes.

After the drinks reception, the meal had gone very well the table we were on, had someone who I had not seen since getting off a grey hound in Philly one July night. Everything went well apart from a 20 minute period where we weren't sure, if the gf was going to have an anaphylactic shock. This was because she hadn’t realised before she eat it, that the chicken had ground walnuts on top.  It was never going to go swimmingly was it.  

As I stated above I really feel my final universities opportunities and the life experience, associated with that are being taken away from me, before my time. I would have preferred my last formals, not to be the last time I see so many people. That feeling will not go away because it is a fact, but how I choose to let that effect me of course is down to me.

But at the same time opportunities do arise. Whilst I have my health and before I am going into chemotherapy, I am currently working on getting a piece hopefully published for the Guardian student section.  In addition to that I am have looked to get this blog out to male cancer charities and hopefully looking forward to taking up some kind of an ambassador role. Because as with many things in my life that I have had to deal with, if I can talk about then I should so others who can't for what ever reason don't have to.

The other issue is whilst being in Belfast and still trying to live in the moment, due to the complications that I have health wise I am still needing to stay on top and follow up with my specialist nurse.  So on Wednesday morning I had one of the weirdest phone conversations I have ever had. Along with finding out my possible prosthetic might be a blood clot, was kind of put to the back of my head due to other things.


The other thing which I remembered from the conversation, was being told that as I was doing a sperm bank on Tuesday, I had to make sure I ejaculate on Saturday. I never thought I would hear those words over the phone. But as with many experience of the last couple of weeks, just another thing to tick of the life experiences list. 

Tuesday, 26 April 2016

Getting back to reality

One of the most difficult things about getting used to dealing and waiting for therapy, is the fact I need to carry on living my life sensibly. The simple fact is that in between appointments and tests there’s still the possibility it might be over and you get to go back to normality. But in addition to that as I really tried to emphasis you need to continue to make sure you remember and be around and apart of every day reality.

However it is a little bit difficult, when you are as I am a in debt student. But at the same time there is very little I can do everyday at the moment.  Everyday for me at the moment, basically involves me trying to find ways to leave the house.  Unfortunately, as is the case for many people out there who don’t have jobs realize that for our mental health, you can’t just stay indoors all the time.

Also just so people don’t miss read this as something its not, I am terrible at budgeting. So trying to remember to think about my money just when I am simply trying to find ways and buy things that make me feel better. So yes I have brought a tshirt from a cancer charity, and yes I have brought a book for 15 quid. And yes I am seriously considering getting a HBO now account.

But moving on from my internal issue. This week as I said I am back in the place I have called home for most of the last 3 years.  Getting back into the house when I  just had a moment to think, one of the things that has hit me the hardest has been looking around mine and my girlfriend’s house and just realizing the loss.

The plans we had made the cleaning rota we had, that’s not going to get seen through. We had a normal life, time is different now.   So this last academic year whilst being really rewarding on so many levels, has been very challenging. Spending 6 months in a new country where you don’t speak the language was never going to be easy. And I can definitely say Poland at times was not easy.

But the one thing that got me through the difficult times, was looking forward and just thinking about what this time was meant to be.

Me and my gf in our nice small house, seeing out the end of our undergraduate enjoying getting the chance to enjoy the city we have got to know so well together one last time. Getting to go see the gigs we want, experience the things we haven’t done but all ways plans to. Unfortunately life never allows you to just have it that simple.

As I am getting older I realizing very quickly how important, short amount of time can be in life. How much can you do, what you can say to someone in an hour which might change there or your life.

Far too often I continue to get told my life is ahead of me, so much more to do. Not really, as I am older and especially in my current situation opportunities seem to be flying passed me.

 One of the frustrating things, was having to give up my place on a University leadership course to Malaysia. Now whilst I can one day go to that country, but that opportunity is not coming again and that sucks.

Interacting with people back in my normal life was always going to an experience. Because I don’t know how I would deal with a friend of mine who has cancer. Its not like you get classes.

One of the  most odd things that I kind of expected, is what do you talk to people who you know just in passing, just waiting to cross the street. I can fully appreciate that fact a lot of the conversations people have wanted to talk off the topic.

 I am sure this is something which many people who have had cancer have experienced. But from my perspective, I don’t really have a lot more to talk about. I have a lot of plans  for this  week and I am depressed, that this will be my last roll of the  dice, and that is  sad but it does make me try to cherish what I can .


Thankfully my  school has  been very accommodating, which will make my plan to finish this year a lot easier. For those of you on facebook do prepare yourself for a dissertation photo on Friday.   This is probably going to be a hard week, but I am going to give it my best. 

Sunday, 24 April 2016

Preparing for chemo

Before I begin talking about how things have been since the appointment I just want to go back to some of the weird things about that day. Firstly was the fact, when  I saw on my ipod that Victoria Wood had died I was more concerned my mum might have a break down seeing that then what ever my results where.  That fact her pulse was 110 didn’t help.

Secondly was the fact the minute I saw that had happened I knew along with everything else I wrote about in the last blog, this was not going to be a good day.  So you get a couple of forms and detailed stuff which I have got the time to try and work through.

The first thing is the large amount of possible side effects.

Which goes from losing your hair, which for some reason I am just coming to the realisation that I am going to lose all of my body hair, to throwing up  to mouth ulsers. So yes really excited for those three weeks starting May 23rd everybody.

Also back on the subject of my hair for a moment.  For anyone who knows me pretty well knows I am a relatively hair man. So going from Hugh Jackman to Christaino Ronaldo is not something I am looking forward to. Although I have been told, not to knock putting trousers on hair less legs until I have tried it, but I will have to wait and see on that one.  

But in addition to that you get the sperm bank leaflet, which it turns out if I want to use my sample in the future it is going to cost me. But I  guess becoming infertile at the age of 21 is just another new reality that I have to get used to except.

Most importantly of all the things I am going to have to prepare for is the fact research on the internet suggests that I am not going to be able to drink coffee.  Just want to say that again I am not going to be able to drink coffee during my recovery and will probably need to stay off coke.

However moving back to one of the small upside of this treatment, I forgot to mention is that apparently there is some funding from charities for teenagers and young people with cancer. No matter what my ages, I am still able get money from some public body for just being me.  

So I am writing this the day before I head back to Belfast, for what is my and will be my last ever week as a university undergraduate student.  It’s a really scary but also depressing thought that the next seven days are the last seven days I will be able to just be a student and do all of the things I do as a queens student. But I  guess along with having to accept some of   the other things I stated above, is just something I have to get used to.

But anyway back to me my upcoming week. Because  I am trying to make sure I finish everything, or to put it another way get one last go at thing that have become part of my university life. One of those thing, has been working in university recruitment for GB students. This has been one of the best things I was able to since my first year and for the last time next Friday, I will be giving a tour. Don’t pity me to much I am getting paid ;)

Due to the fact I am trying to make sure I do everything, as well  as deal with all the different admin things, that I need to do in my department to work out what is the best way that I am going to be able to finish if not officially graduate this academic year.

One of the slight difficulties when trying to  organise some kind of schedule, so I can make sure I can make the best of it, means making sure my schedule  lines up with  what my girlfriend has planned for that week.  Now for any of you, who know me and my girlfriend very well, know we are very different people. I do have to be careful how I phase this, as she might actually read this. I often always try to plan for the future and next week is just another case of that.


My girlfriend however very much lives in the moment, which is great. Often I feel like it helps to mellow me out, however that does mean trying to get her to commit to a weeklong schedule a day or two ahead of time is a little bit difficult. 

Friday, 22 April 2016

Facing the reality

So today was the day.

It was the day which would define and effect my next 6 months and could really put my life on hold. It didn't get off to the best start, managed to get lost on my morning walk so it was really a sign of things to come. Side note am really getting into my power walking routine, Carmel give me a couple of months might be near your level ;).

I Tried to call up early so I could get a bit of a head up on what my blood result are, Paul who recently having come back from holiday, catching up on a lot of work, he was not going to be able to take the time to look up blood results which will be followed up at 4pm.

 In order to try and make the day go a bit quicker me and mum went to the cinema, thought with a 4pm appointment 12:40 movie we would be fine.  Well firstly Zoo tropilis is a fantastic, a nice and fluffy movie Disney movie which considering the circumstances we both needed. It also gave me an idea about how I am going to spend my time in recovery after treatment. There was a guy in front of us who I saw after the screening had ended and we where leaving, just walk into another screen.  

 However, there was a slight issues as it turn out we were a bit wrong, time wise. Mainly because we had to go and pick up my dad at a time when everyone was leaving the local primary school.

We made it back to ours at 20 past; the appointment was at 4:00. So despite the rush we actually made it with 10 minutes to spare. However in the end, our efforts made no difference, as they were 40 minutes behind. The joys of the NHS.

The moment came and we went in, its never reassuring to be seeing a new doctor who for some reason did not appear to have any of your notes from previous meetings.  So the moment we went in the word treatment was used and I knew straight away as I suspected I was never going to get out of this in the clear.

But before I knew quite exactly how screwed I was, first thing I wanted to get checked was my second lump. So I went into a side room with the doctor and Paul the specialist nurse who the second I pulled my pants down, pretty much said in unison, it’s a prosthetic. Whilst I am pissed off that I have something in my body which should have been there, I am more just relieved that it was not a cancer relapse.

Once that got sorted, my situation was outlined. Despite the seriousness that it sounds, I currently am not that in trouble. My blood levels are continuing to drop so the surgery worked. I don’t have a new tumour in my body.  However I do have the small possibility of that a lymph node in my body is 1cm away from being considered enlarged to a dangerous  level. I also still need to get blood test, until stuff have dropped which means I get only a week break from this place.

Due to this possible complication, actually works well for me. This is because they can’t start treatment until they know if the lymph node is expanding or staying the same so I know have a month to enjoy my time a little bit.  Now if it turns out I need 3 rounds and the node expands then I will be pissed but until that point, but thinking positive people.

So straight after we finished me and my mum headed to Wolverhampton to go see Stuart Goldsmith , I know a bit of an odd thing to do.My dad did ask when we came back if I didn't just want to sit and think about everything. But the thing is there is not really that much to think about. My mum put it well, this is not so much of a battle or anything I have any control over. Things are being done to my body, so when I have little control of that there's not really much to think about.

Also I paid for  the tickets and its the principle of the thing sometimes ;)

 But I really loved it, because it was great to just focus and indulge in something completely different. Also so nice to go to a gig, where firstly san miguel was only 3 quid, and the person working the bar when I didn't have cash, as they didn't take card, to let me pay later. 


I don’t know when my next blog will be, but treatment doesn’t begin until May 23rd so hopefully it will be me continuing to enjoy life and my hair / beard before it goes. The hair not my life ;) 
 Belfast see you Monday.