Lymphoma Life

Jordan Harrison • 26 • My life with & recovering from stage 2B Hodgkin Lymphoma

[lymphomalife]

Long gone week

This has probably been one of the worst weeks of the year - so far. I’ve been coasting on this same level of depression, anxiety & paranoia. I’ve tried exercising, meditating, writing down my feelings and destroying the paper. Nothing seems to be getting me out of this.

Every tiny little thing is sending me under - i suppose it doesn’t help hearing that people have been talking about you - but I’ve always been abit prang about, well, everything to be honest. I guess that’s why I try and keep to myself so much and spend so much time at work or home.

I’ve been trying to rack my brain of things I can do to get my brain back on track, so my plan (at the moment anyway) is to price up interrailing for a couple of months. See the world and hopefully find somewhere that I finally feel like myself and where I don’t have these feelings anymore.

So wish me luck and if anyone has any tips or cities to visit, slide into my DMs plzzz!

[lymphomalife]

Meditation

I’m trying to start to get into the habit of meditating again. It helped me so much when I went through my dark patch last year, and I just kinda fell off with it. So I’m trying to do ten minutes before bed and ten when I wake up. I’ve also been meaning to go to a gym with my cousin and start working out but when I got those last results in my anxiety went through the roof and I couldn’t bare going. So I’ve downloaded a couple of quick work out apps in the hope that it will get me into the swing of things & I’ll get the confidence to go to the gym and work out properly. I’ll always be taking applications for people to go on nice walks with! If I can just get into the habit of going to bed and waking up at a reasonable time, I’ll be on my way to a happier healthier life. How exciting!

If anyone’s been wanting to start meditation but not sure how to go around it, I’ve been using an app called Headspace. It may seem counterintuitive using your phone to shut off, but the little man in there guides you through your breathing, you can tailor sessions to your feelings and you can have a quick minute or 5 minute sessions. 10/10 would recommend.

[lymphomalife]

fuck anxiety

I thought that writing my last post before bed was a great idea, but it just lead to me having a shitty sleep and waking up like a big ball of anxiety. I feel sick to my stomach and all that’s going round my head is that my lifes a mess, I’m broken and alone. 

Like what am I actually doing with my life?? I work in an industry that I’m starting to hate and I know that it’s contributing at least 60% to me being a mard arse all the time. I keep looking for entry level jobs elsewhere but everywhere wants you to have a degree or at least 50 years experience to even be considered. So that sends me into a spiral of ‘why the fuck did you piss uni up the wall’. Lit like where would I have been in life right now if I actually gave more of a shit about my education that trying to impress a group of people with how fucked up I can get. 

So I took a little break from writing this to meditate and consider what my biggest gripe with how I lived in the past is, and it always came back to not finishing uni. So I’m currently sat filling out UCAS like it’s 2010 all over again, hoping upon hope that I can secure at least my tutition being covered by student finiance. So if there’s anyone else out there, who like me fucked uni up but has gone back and secured a place, please, please inbox me and give me some tips!! UCAS is melting my brain right now.

[lymphomalife]

hey strangers

I decided to start writing again because realistically my journey hasn’t ended just because chemo has. There was a period where I thought that I would just move on to this next part of my life and it’s not always as simple as that. So it kinda makes sense to me to carry this shit on, get my thoughts & experiences down & clear my head.

In terms of the lymphoma everything’s great! All my recent scans have been all clear and I’m not due another for a month or so. I have been having all kinds of other tests though. The main one I want to talk about is a fertility test which I had just before Christmas, it was pretty basic - they took around 12/13 viles of blood and sent me on my way (by the way guys I don’t recommend having that much blood taken and then going to the Christmas markets and getting drunk on mulled wine). I had to wait until last week to get my results, and to be honest we weren’t too worried about them as Mother Nature came to visit with a vengeance.

The report from the Dr was initially good, the test before Christmas didn’t show anything bad and she said that if my bloods from that day were fine she could discharge me from the unit! But unfortunately I got a phone call from her a few hours later & the tests shown signs of Premature Ovarian Failure; which basically means that I won’t be able to get pregnant naturally and I’m menopausal at the ripe old age of 26. But this is why I had eggs frozen at the start of all this, I think it’s just having the op

Now anyone who’s known me for a while should know that I’ve always said I never want kids - I mean I can’t even look after myself half the time, how am I meant to look after a tiny person??? To be honest if it wasn’t for having cancer and being told at the start I may have the option taken away from me I never would have thought about having kids. More and more people around me are popping them out and over the last few months I’ve started getting really excited about the thought of a mini Jordan running round.

It’s kinda heartbreaking but that’s why I had eggs frozen at the start and also there’s thousands of kids out there who need a loving home and that could be a kinda beautiful thing. Maybe I’ll adopt them all and take over the world with my army of kids.

🖤

[lymphomalife]

Good news/bad news

So I’ve got my latest scan results today, and I don’t really know how to take the news if I’m honest.

The bad news is that a few of the lymph nodes in my chest have got around half a cm bigger. The good news is that there’s no metabolic activity - basically they’re benine and my white cell count is still high. Unfortunately it’s too early for any sort of test or biopsies, they could preform surgery but it’s so early it could all be for nothing.

So I’m just gonna have to stay in my magic and hope for the best over the next couple of months.

[lymphomalife]

f i n a l l y

Well I’ve finally got to the point where I can’t even excuse some people anymore. It’s amazing how long some people will actually keep up their shitty false apperances for & I’m gutted it’s taken me this long to put my foot down. 

As most of you are aware, since I finished treatment I’ve been struggling with my mental health. Having waves of depression & anxiety combined with feeling lost and helpless I felt at my wits end, I tried to reach out to several people but only a few even bothered to respond. Now, this is the argument I’ve been having with myself since this happened; 

1. WE ARE ADULTS, everyone has their own shit and jobs etc to deal with, why would the bother dealing with your problems

2. You have done this so much that they are probably sick to death of you 

3. (Wo)Man the fuck up and get over it, you’re being pathatic

I know have so many things to be grateful for and there are so many people who are genuine and actually want to be there when shit hits the fan, but it’s those select few that keep me up and night, and make me doubt every person I’ve ever called a friend. 

I completley reached my wits end a couple of weeks ago and was ready to , stick two fingers up to the world and wash my hands of everything and everyone. But I’m still here to tell the story & I would like to think that I’m stronger for it, then again if I was, would I be here writing this post? 

I used to laugh at all them memes and photos on social media banging on about keeping your circle small, don’t trust everyone blah blah blah. But now I’m starting to think that those posts are right. Maybe I should be less trusting & more stand offish. Maybe this blog & letting everyone into my mind is the worst idea, maybe it’s made me unapproachable. WHO FUCKING KNOWS?! 

All I do know is that it’s time to clean up my life (& social media) I’m over trying to make any kind of effort with these people, I know deep down who actually cares whether or not those two fingers actually go up or not & they are the ones I will love unconditionally. 

[lymphomalife]

Stop telling people to cheer up

I’m sick of seeing post after post of people saying “just smile” “don’t over think things” “just be happy” like it’s all that simple. Don’t get me wrong, I know they are posted with good intentions, but it’s just dumb. As someone who has struggled with low moods over the last few months, - in my opinion - it sounds pretty patronising & makes me wonder if any of these people have actually gone through serious bouts of depression & anxiety. On a down day for you, yes it might be easy for you to start to think positivley at the drop of a hat, but for a lot of people it isn’t. Speaking from experience dissmissing those bad feelings without actually looking into them & yourself is very dangerous, and one day it all just explodes into a big cloud of emotion & before you know it you’re full of existential dread. We need to be addressing those shitty places our brains go to sometimes, otherwise how will we grow as people? We also need to be trying to help these people that are struggling and not just say “well maybe if you stopped over thinking everything...”. At this point in our lives we should all be grown enough to know that life isn’t as simple as that, as kings and queens we should be lifting each other up, helping each other to deal with our problems and just generally being decent human beings.

[lymphomalife]

round 2

waking up in floods of tears yet again. I’ve spent far too long recently wondering what the fucking point in life is, I feel like I spend most of my time trying to get myself out of this feeling when just ramming my head into a brick wall would probably be less painful. I’m definatly reaching the point where I feel like I should just give up. I’m struggeling to see the light at the end of this journey now. All I want to do is spend the rest of my life in some little bubble where these feelings just don’t exist. I don’t think I can deal with waking up and feeling like this much longer. 

[lymphomalife]

pt2

i feel like the majority of people wanted to be there when i had cancer, because it’s easier to be there for someone who is phsyically ill rather than mentally. I mean like it’s easier to find something to say when you can see it. I feel like the more I feel like this the further I push people away, like I’m gross or some shit. I just want my old life back.

[lymphomalife]

Waking up this morning, I felt super happy & hopeful. I was in as good of a mood as you can be when you first wake up. It’s as the day progresses my mood just spirals completly out of control, I haven’t really moved much over the last 24 hours, infact I’ve been asleep for most of the last day or two. The last week or so has been a bit of a strain, I felt like I was finally starting to feel better within myself but since I’ve got back from Barca I’ve felt a bit pants. The only time I’ve felt normal & actually happy is when I’ve necked a few glasses of wine. Don’t get me wrong I’m trying to take the steps I need to, to make myself feel better but as soon as I kinda feel like I’ve maded some kind of progress something happens that knocks me back 50 pegs, it’s like the whole world is a trigger at the moment. I’m trying to plan things to look forward to but I keep getting these waves of dread like what’s the point. But really I know there’s a point because eventually, making plans will help me get out of this place. I think it’s a lot easier to sit and wallow when you’re friends live a bus ride or two away. I feel like it’s been one of them days for too long now, so pump me full of meds, throw me on a happy train, what ever will work i  need to get the ball rolling properly on something.

[lymphomalife]

wakey wakey

It’s been one of them mornings again and I’ve only been awake for 20 minutes. I think last night was the longest I’ve slept for nearly a month. My heads been all over the place this week, I couldn’t even face going to speak to my councillor on Tuesday, made up some stupid excuse about being too ill & now i actually have a cold, karma for fibbing? I’m really struggling to get back to normal, for the last nine months all I’ve had to focus on is chemo and a relationship and now I don’t have either of those, I feel so fucking lost and confused and all I can think is if I’m not getting the relationship back so why can’t I have cancer back, at least then I have something to focus on, something to make me feel like a real person again. I can feel the self distructivness coming out, I just want to be smashed all the time. I thought going back to work would be really good for me, but I can’t deal with having to go through this whole process of people asking what I do, like if I’m in uni blah blah blah, then I have to explain my life and plaster on that painfully annoying smile and nod and say ‘thanks, I know I’m such a brave person’ when in fact I’m an actual shitbag. I think I need to get the heck outta this country, start again & pretend that this year never happened. Like I why isn’t some kind of laser or some shit that just beams shitty memories away, or will somone give me a boop on the head and try for amnesia. I can feel myself very slowly giving up, I don’t like myself, I don’t like my life and I don’t know how to fix this, like how do you learn love yourself when you feel so worthless all the time? 

[lymphomalife]

I woke up this morning for my two monthly check up in floods of tears. I think that my anxiety gets so much worse around this time, even though I know in myself that I’ve not relapsed or anything. Because my last scan was so clear they don’t want to subject me to uneccessary radiation, which is great but it does feel like more pressure to be checking my throat and stuff everyday. I know it’s pretty fucked up but I do sometimes wish that it would come back so that I’d atleast have something to focus on, give some meaning to my life.

I spoke to the doctor a little bit about how I’ve been feeling & just like everyone else has said, it is completly normal for me to feel like this at this point of the journey. I’ve spent the last few months being told I’m too moody or being just a bitch so it’s only been the last week or so that I’ve started to realise that I’m actually not.  There’s a chance that this could be menopausal as well but I’m gonna have to wait a few more months until I know that for sure. 

One of the biggest problems is that I have so much free time right now to just sit and overthink life, I think I need to start picking up some shifts & getting back to normal sooner rather than later. I mean don’t get me wrong nine months ago I was super excited to have some free time, I was going to achieve everything I didn’t have chance to while I was working full time but once it came down to it I’d lost all motivation and concentration. I was kicking myself at first (and I still kind of do) because I felt like I wasn’t doing anything with my life, it wasn’t until someone explained that chemo can do this. 

This past couple of weeks have been hell to be honest, I just have to keep trying to tell myself that this feeling is temporary & that if I can beat cancer I can beat feeling like this. 

[lymphomalife]

I think it’s about time I addressed my mental health.

People still bang on about how I’ve taken having cancer like a champ and how brave I’ve been, when really I actually haven’t. I’ve been suffering with depression and I’ve flat out refused to deal with it for the last six or seven months. I thought that if I just ignored it eventually I’ll feel better but that isn’t the case in the slightest. But cancer & a recent break up has left me feeling like I’m spiralling & is made my brain go to some pretty dark places. 

Throughout treatment I could feel myself falling further & further down the rabbit hole, but I felt like I had this responsibility to at least try and remain positive for everyone else. I couldn’t let them see how shitty it made me feel because then they would feel shitty. I wake up a lot wondering why I’ve had this chance to survive, questioning my life and what the fuck I’m gonna do with it. I had no motivation to do anything that productive or to get out of bed even when I did have the energy. I have so many days where as selfish as you all probably think it is, I wished it was terminal. Kinda still do.

Recent um, heated discussions, shall we say, have left me realising a lot about the past 9 months as well. Hardly any of my friends were there. I mean I had lovely messages of support off people & even some beautiful gifts, cards & messages - and I’m in no way trying to deminish their importance, because they were the only thing that got me through. But inbewtween them moments I felt so fucking alone, I was hospitalised six or seven times & no-one came to visit me until the very last day I spent in there and I’m sure if it wasn’t the day it was no-one would have. And don’t get me wrong I fully understand that everyone has jobs & lives but I dunno it got lonely. I would spend most of my time feeling like I was on the outside looking in & even if I did manage to get out of the house I would still be sat with people feeling like an outsider, like I’d missed too much already and I’ll never catch up again. I mean I’ve never been the most boistrous member of a group but I feel like a wallflower more than ever now. But most of the time I feel like a new born adult, like I’m just fucking wandering around with absolutley no direction in life and no clue how to live it & the more I think & feel like this the more I hate myself for it. 

I’ve kept it to myself for too long now & I need to do something about it before I can’t pull myself from the dark places. 

It’s okay to be sad sometimes.

[lymphomalife]

two months later

So it’s been over two months since my last treatment. I kinda feel like I’m recovering & I kinda don’t. I mean in terms of my body yeah, I have more energy - though if I do a bit too much my body is just like ‘nope’. It’s more my mental recovery I’m worried about. It’s easy to get excited because that part of my life is (touch wood) over forever & I have all this free time to do loads of things but realistically I hardly have any motivation to do anything that doesn’t involve me drinking at least a bottle of wine. I hate it when people ask ‘what are you going to do now?’ and I have no idea how to answer that, I mean I know what I want to do & know how to get there, but at the same time I feel super lost & like I’m never gonna get out of this rut. I’m having anxiety attacks before I leave the house & just generally overthinking everything about myself when I actually get to where I’m going. I don’t sleep most nights because I’m worrying too much that tomorrow’s just going to be the same as today & even if I get the chance to leave my house I probably won’t because I’m overthiking the whole concept of walking out of the front door. The kicker is that I even know that the only person that can change any of this is me, but my brain just won’t get over this stupid hump. 

[lymphomalife]

LAST CYCLE

So I start my last cycle on the 23rd & all I can think it that it’s an absolute madness that it’s (hopefully) all over! I’ll have to go for frequent check up and scans over the next few years, but I’m keeping a positive mental attitude that it’s never coming back! 

Looking back at when I first got diagnosed and just the thought of having six months off work got me so giddy! I had so many plans & ideas, but, as we got further down the line - particularly when I had to change regimes it became more difficult to get out there & be social and plan things. Weeks blurred into each other, my energy totally dropped & when I did have a little bit to spare I burned it a little too hard and found myself with infections in hospital. 

I went through a faze where I would be giving myself a hard time for not being able to concentrate or feeling like I wasn't achieving anything. After a chat with my key worker she explained about ‘chemo brain’ and how it can effect concentration & memory, so rather than trying to achieve massive life changing goals, I’ve tried to condense them to little things like seeing my friends for a few hours or even just getting a couple of lines down on illustrator.  It took me a few months to realise that I was already doing one of the most important things I think I’ll ever do - I was beating cancer! 

I’ve had a lot of messages and stuff from this blog from people telling me how brave & strong I am and how much I’ve inspired people. To be honest, I don’t feel brave or inspiring. The main reason I started to blog about the whole experience was because in all honesty I’m not one for verbally communicating my feelings, so it was a way for me to get all my thoughts down and secondly because I have friends & family all over the world & it just made sense to have all the info in one place! That being said, I am super proud that I’ve been able to inspire people in their journey. 

I never ever would have got through this if it was wasn’t for the unconditional love and support I've received. I genuinely want to cry a little every time I think about it. At the end of the day it’s not just been my experience, my family & friends (and everyone who reads this) has gone through it all. They’re the people I’m most proud of, I mean I’m moody even on the best of days let alone after spending nearly 6 months cooped up so I don’t know how people have coped with that! 

I might have had a couple of stints in hospital and missed out on some events & at the time I couldn't think of anything worse but in retrospect I’ve been so fucking lucky! I’ve seen lots of patients go through so much, having to have transfusions whenever they’re in, constantly being admitted onto the ward & just generally struggling - my journeys been a breeze in comparison. 

I guess what I really wanted to say was thank you to everyone - particularly my mum & dad for dealing with the brunt of my bad moods - for all the love and support. You’re all golden! 

[lymphomalife]

Now, I don't know if it’s because I've been stuck in hospital for the last 3 days and my bedroom for like a week before that or what but this situation as a whole is really starting to get to me. 

I know in the grand scheme of things I'm super fucking lucky to even be well enough to write this and I should be grateful that I’m going to recover eventually, but right now it all seems never ending. It doesn’t look like I'll be having a particularly special Christmas or new year wrapped in my little bubble, probably why I’m making more of an effort to be a grinch this year. I miss just being able to jump on a bus and see my friends & go to work, but at this point I’m almost anxious at the thought of socialising. Like what do I even have to talk about anymore? All I've really done over the last 6 months is sit in my room. 

I’d like to think that I’m just having a bad day but in all honesty it’s been a shitty, shitty year and the weight of everything I've had to deal with is finally catching up to me. Suppose I can't be happy all of the time.

[lymphomalife]

It’s been a while..

It’s been a while since I’ve posted anything on here, to be honest I don’t really think I've felt like sharing. Quite a bit has happened since I last put anything up, I mean I didn't even post when I went into remission. But yes on 14th November (one month today!) the good Doctor informed us that I’m in complete remission! There is still a mass on my chest but there’s no activity on it, just gotta finish my last two treatments then I’m all done. 

It can’t come soon enough to be honest, I feel like a pin cushion & my veins have collapsed a couple of times. There’s a chance I’ll have to have a PIK line put in for the last two cycles - which I’d rather avoid, hopefully my veins will do me a favour and hold up till next month. 

I got admitted into hospital again a few days after we got told about remission with tonsillitis. Fingers crossed that was my last stay - I’ve got a bit of a cold at the moment which is slowly killing me off but thankfully nothing that warrants another hospital trip! I had to have my first blood transfusion on Monday as well, kinda weird to think that someone else blood is currently pumping through my body. Shouts to everyone that donates blood! 

I think now more than ever I actually look poorly. When it was just my head that was bald I just looked like a gal with an edgy hair cut, now my eyelashes and eyebrows are falling out and you can actually tell that I’ve been/am a cancer patient. I can obviously draw my eyebrows back on but it’s my eyelashes that have effected me more, I can't get extensions because there’s nothing for them to stick too & I am that terrible with glue ons that I have a nervous break down & glue my eyes together every time I try to apply them. I suppose theres only a month or so left of treatment and then once that has finished everything should start to grow back - hopefully not leaving me looking like a yeti. I don’t really sleep at the moment & I feel like I’m going from day to day like a zombie, it’s leaving me so uninterested in life. Just gotta keep telling myself it’s nearly over and it won't be long until I can get on with things. Who would have thought I would be so eager to get back to work!