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. 

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

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. 

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.  

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.  

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. 

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 4^th 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.