Back to reality?

yesss

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.

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. 

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

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.  

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. 

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 20^th. 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.