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[shannons-striving]

My Birthday

Hello! It’s been months since I last posted and A LOT has happened. I felt inclined to update incase anyone who doesn’t know me thought I was dead lol.

I had my Bone Marrow Transplant on September 21st. I’m now 89 days post transplant! So close to that golden 100. After that I’ll start weaning off some drugs and visiting the hospital less. If I was to update you on everything that’s been going on, this post would be huge. So I’m just going to keep it brief. It’s been a rollercoaster ride, but overall I feel pretty good! I struggled so much with eating and nausea for some time, but it’s vastly improved. I’ve gained some weight back, my hair is growing in really quickly and I’ve been able to get up-to things again. I’m also VERY excited to say that my bone marrow is now made up of 100% donor and I’ve had the all clear! The doctors are very pleased with how I’m doing.

It’s all been a very gradual process but I am SO grateful to be where I am right now. I was inspired to update again since today is my 23rd Birthday and I’m just bloody ecstatic to be here to be honest. It’s something you totally take for granted until suddenly your future is hanging in the balance. Life is so very precious. I hope to get in touch with my donor soon, even though we’ll have to remain anonymous to each other for a period of time. I don’t even know how to begin to thank her, how can you possibly put it into words?

This time of year is usually quite difficult for me. Over the past few years I’ve had really bad anxiety and panic attacks over the Christmas period. I also get really really down about my mother, I miss her lots. I can usually think of gifts and bits and bobs I want, but I can genuinely say this year that I do not give a shit. I am just so happy to be here. I’d love people to give blood or sign up to donate marrow, but I don’t really care about me. Having time with my partner, friends, and family is more than enough.

I still have a ways to go in my journey, but thank goodness I am where I am right now. All thanks to a wonderfully kind stranger. This whole process has made me so much less cynical about life. There are amazing people out there, people who care unconditionally. I want to spend more time helping others in future. This is what this season is truly all about. 

[shannons-striving]

Infertility & Womanhood

This has been on my mind ever since I was told that it’s likely I’ll end up infertile due to full body radiation. The rays from the radiation will very likely kill all the eggs in my ovaries, causing early menopause. My periods may stop completely or be irregular and It’ll probably affect my womb to the point where I can’t carry a baby.

Now let me talk about my thoughts on children. I have NEVER really wanted kids. I was told time and time again when I was growing up that I’d change my mind. My mother used to go on about being a grandmother and how I’d regret it if I didn’t. She absolutely ADORED my nephews and niece, I think being a Nan was her favourite thing in the world. Ever since my older sister had them, she was always there for them, spoiling them in any way she could. But I never changed my mind.

The thought of being pregnant isn’t fun to me, the sheer responsibilty I’d have to undertake, just... nah. A lot of people may put it down to me being young, but lots of girls I know and who I knew growing up always dreamed of having children. But all I really knew for sure is that I wanted someone who loved me and to live comfortably enough to travel and see amazing things. I’ve always wanted marriage, I’ve known that from a young age. Even though I think some of the things surrounding it are outdated, sexist, or a bit too religious for me. I still always knew, I like the idea of it. I like the idea of two people committing their lives to each other, a public declaration of love and commitment, that appeals to me.

Society puts so much pressure on women to re-produce. Some people act like it’s our only purpose in life, that not having a child is going against nature. As if humans don't do that every single day anyways, with cars, medicine, and our pre-packaged everything. Woman are not incubators, life can still have value and meaning regardless of wether you have a child or not.

All that being said, when I was told this news I went home and cried about it so hard. It’s not that I want children, it’s that the option to have them has been stripped away from me. I always reserved the right to change my mind. Now I might never have the chance.

I KNOW that women are more than their ability to bare children. Lots of women are left infertile for loads of reasons. Trans women can’t carry babies, but It makes them no less woman In my eyes. Yet I feel like my womanhood has been stolen. I feel like my femininity is being crushed. I’m losing all my hair and now being made infertile. I know full well how wrong I am, I just still feel heartbroken about it.

There’s no guarantee that it will completely zap all my eggs, but it’s highly likely. I had the option to freeze eggs at the start of chemo, but they said it was unlikely to affect my fertility then and I had an internal scan and my ovaries were perfect. It would also have delayed treatment by 2 weeks, so I just didn’t bother. Now it’s a bit late, I’m not sure I would still do it anyway. Living for myself Is more important than anything right now.

There are lots of options like adoption and surrogacy. It’s just knowing that I'll never have a child of my own flesh and (currently broken) blood. I’ll never see my genetic line passed on, see my features looking back at me in the form of a tiny human. I don’t think that should be the main motivation for having kids, but it must be an incredible feeling.

I’ll be okay. If it means living then this is a small price to pay. Technology has come on so much. This doesn’t mean I have to be childless and it can still be half of my partners DNA. That alone is worth it. You don’t need a biological child to be a good mother, you just need the heart. I don’t know if it’ll ever be for me and I still do grieve for the fact this has to happen.

If I ever do change my mind and decide to have a child some day and they by some miricale read this. That somehow Tumblr hasn’t gone bye byes and this text remains. Know that you are so loved. Know that I fought so hard for you, that you were wanted so very badly. I hope I make you proud.

[shannons-striving]

A Better Day

Today I started my new chemo cycle. It involved chemo via lumbar punch and 2 IV’s one drug called Cyclophosphamide and another called Etoposide. I’ll be having these IV’s for the next 4 days. I’ve had no real side effects yet, other than feeling very very tired. I was tired beforehand though, I barely slept last night. The anxiety and the crying was too much. I really did not want to go to the hospital today, I wanted to run and hide away. That’s stupid, but It’s how I felt.

I was SO nervous about the chemo making me sick. Etoposide can apparently make you very sick. I was put on strong anti-sickness meds and I think that helped a lot. I have been a little nauseous but NOTHING like I thought it might be. Again, it’s the fear of the unknown.

Talking to Louise (my reflexologist) has really put me at ease. She’s seen lots of patients go through bone marrow transplants and she finds the whole procedure to be amazing. She talked about lots of the positives and it made me feel so much better. I love being here on Tuesdays because of her, the foot massage is so relaxing and she always cheers me up. She’s just an absolute ray of sunshine.

I took today’s chemo well. I’m hoping I can do the same tomorrow, and the next day. I’m taking it a day at a time. They keep telling me possible symptoms and what to expect, but so far throughout it all, I think I’ve handled it well. I’m almost scared to say that incase it jinxes anything.

I’ve calmed down a lot now. I just have to keep going forward now and that’s that. I can do this. My body just has to lay there and take it, the hard part is the mental side of it all. I don’t want to lose my spark, I don’t want to be anything other than Shannon. I need to stay positive and keep going. This is not the end for me. Some people get told that there’s nothing more that can be done for them. I didn’t get told that. They want to give me a transplant as early as they can, to give me the best possible chance. If that doesn’t work out, there are even more options down the line. My consultant was very reassuring when I think about it. The hardest part is just wrapping my head around this new routine and this new plan.

I’m missing my Mam a lot tonight. There’s a girl here on the ward who has her mother with her, she’s sleeping here at the hospital and by her side constantly. Seeing them really makes me want my Mam. I know if she were alive she’d be worried out of her mind, she’d be demanding the very best for me and she’d be by me constantly. She was fierce when it came to us. A part of me is glad she’s not here to see it and worry about me and another part is devastated that I have to do it without her. I think she’d be so proud of me if she could see how well I’ve taken it so far. I miss her with all my heart and I’d give anything to have her here with me right now. I miss sleeping in her bed next to her. When we were ill she’d often let us sleep in her bed or we’d sleep downstairs on the sofa and she’d sleep on the other one. My stepfather gets up at 4am for work and I’d usually still be up by then because my sleeping is a mess and has been for years. She’d usually pop into my room then and ask if I wanted to jump in with her, I always did. Sometimes if I was anxious I’d go sleep in her room, too. I did it more when my Nan died and my Mother was suffering badly with the grief and had quite bad depression. I think she appreciated having us around her more.

Whole thing probably sounds childish but I still liked to go cuddle up in my mams bed, right up until she passed. I want nothing more right now than to have her here, next to me, to hold her hand. The older I get the more I realise how bad it must have been for her to lose our Nan. Not having her here to go through this storm with me is hard. I’m getting so many lovely comments every day, it makes my heart beam. There are lots of maternal figures in my life, I suppose. But nobody compares to your Mam, no matter how old you are, you still want to run and cry to her sometimes. I don’t know what I believe in, but I do hope she’s here in some way. There’s not single day that goes by where I don’t think of her and miss her. I love her dearly and it’s weird that I’m getting older and growing up without her to see it.

I wrote most of this last night, I got really sleepy and had to stop. It’s now the next day. I’m still okay, very very sleepy. I slept like a log and I’m still really tired. That’ll be the chemo. So far, so good. I can handle being tired. I went through a lot yesterday. Just the 2 bags of chemo today. I’m proud of how I’m handling it so far, I’m gonna let myself be proud. If you told me a few months ago that I’d be taking on any of this, I wouldn’t have believed you. I don’t think my past self would even recognise the person I am now. I’ve gone from a scared little girl who sobbed her heart out the first few nights, who was physically shaking with fear. I sobbed my heart out all over again when I found out about the transplant. But now I’m back in the game, fuelled up with a new fire in me and ready to take this on. I want to get better and I want my new life.

[shannons-striving]

Bone Marrow

Today has been a hard day. I’ve cried so hard and so much. I got my full test results back. It’s good I think but not good enough They still found some cancer cells in me. It’s gone from about 95% to 5% which still sounded amazing. But after talking with my consultant, they think that my best chance now is with a bone marrow transplant. It’s a huge deal and very intense. My heart absolutely hit the floor when they told me. It felt like being diagnosed all over again. I had previously looked into bone marrow transplants because I knew it could be on the cards, I was just praying that I could recover with chemo alone. The way they do it is amazing, they already have donors in mind for me, too.

Before it happens they’ll be giving me more chemo cycles. More intense. The aim now is to get lower than that 5%. To get me into remission would be ideal but it isn’t a must. They want it to go as much as possible beforehand. When we reach that point I’ll have radiotherapy for 4 days to essentially kill my current bone marrow, after that we proceed with the transplant. There’s no surgery involved, it’s just a transfusion, like a blood transfusion. The cells then go into my body and hopefully find their way to my bone marrow and start producing normal blood. It’s crazy. My immune system may fight the new one, there’s always a chance of rejection but hopefully it’s able to take it and fight. I’ll be in an isolated room for a while that I can’t leave to avoid infection risk. I can still have visitors, thankfully. Side effects will probably be intense, I’m praying that it all goes relatively smoothly. Doing this will lower the risk of the cancer ever coming back.

Tomorrow I start my new chemo cycle, there’s new drugs. Apparently the one can cause you to feel very sick. That’s terrifying. I’ve asked for some strong anti-sickness drugs to help. They say my appetite might go, I could lose loads of weight, just lots of nasty things. I’ve coped with chemo well this far and I haven’t had many side effects, so fingers crossed that I’m okay. I’m going to try and help myself as much as possible.

I’ll be having chemo lots more this week, they’re keeping me in to keep an eye on me since they don’t know how I’ll react. If all goes well I can hopefully go home.

Good thing about this treatment is that I’ll probably have breaks that last a few weeks to recover. That and the fact that once this transplant is done, so is (hopefully) all of the treatment. I won’t need any more chemo, just to recover from the transplant and that’s it. Obviously I’ll still be in for checks and things, but the nasty stuff will be over. They’re hoping to do it around October time, so I could be okay by the end of the year. 

They call the day you have a transplant day zero. It’s because it’s the first day of your new immune system and new life. It’s crazy.

The radiation will probably leave me infertile. It never bothered me before, the idea of not having kids. I’ve never given it a huge amount of thought and never really found myself wanting to have children. Now the option has been taken away, I’m upset. The thought of not being able to have my own child if I want is horrible. I know there’s adoption and LOADS of other options. It just sort of drove home how intense this is.

Taking it a day at a time, deep breaths. I’m absolutely terrified. I’ve sobbed my heart out and I’ve gone to stay at Ciarans’ because I just can’t be alone at all tonight and I need someone who will be able to stay up with me. I’m an emotional wreck.

I’m dreading tomorrow so much, I’m dreading being back in hospital. I don’t want this, any of this. I know I have to do it and I’m SO determined to live. The anxiety is just a lot. The thought of being so ill or not making it is ripping me in two. The thought of leaving this world and even more so, the ones I love... I just can’t cope with it, it hurts beyond measure. I can’t let that happen.

[shannons-striving]

Hospital & Hope:

A big update today. On Monday I had my PICC line fitted, my lumbar punch and bone marrow test. All procedures went smoothly bar the PICC line fitting, it took 3 attempts to find a vein so it took a fair bit longer than it should have, but it was pretty painless and now I have the convenience of being able to have bloods taken and drugs given through it. Lowri was there with me for all the procedures, she’s been a star.

I had a blood transfusion the next day, that was long and exhausting but I got though it fine, just a bit moody.

The next day was free, I was just sleepy and a bit groggy. I’ve completely weaned off steroids now and started chemo pills. So far, so good. No real nasty symptoms.

Today I came in for blood tests and my bone marrow results. Bloods are fine. The more detailed bone marrow tests are yet to come back, but from the preliminary tests where they just look at the slides under the microscope they found NO LEUKEMIA CELLS. I am absolutely over the stars and moon. I know I still have a way to go, I know there will be dips on the way, but this MUST be a good sign. I feel like a weight has been lifted, I feel like I can actually start living a bit. For weeks now I’ve felt in this limbo, like I was in some sort of purgatory. I know you can only take life one day a time, but just knowing that something must be working makes it hell of a lot easier. I got really emotional when my doctor told me.

It’s not all rosy though. I’ve been admitted to hospital due to some pain and inflammation in my arm. They think it may be a small clot or infection so they have me on antibiotics and anticoagulants. I shouldn’t be in here too long, hopefully. It sucks to be back but at the same time I understand why and that it’s the best thing for me, I’m in the safest place.

So even though nothing is perfect, I’m in a good mood. It’s given me a boost, it’s given me hope and it’s given me a bit more spark. I’m more determined than ever to beat this thing. I’m doing everything the doctors are asking of me, trying to keep myself hydrated and nourished and just trying really hard to keep up a good attitude. I want to hurry up and get out of here so I can have my Dads lovely roast dinner. Fingers crossed that these antibiotics kick in soon and I can go home! 

I’ve been on some really powerful drugs, but hope has been the strongest one of all. It can feel pointless, it can feel really stupid to hope and dream at times. There were times where it made me feel so naive and out of touch with reality, but I don’t think that should come into it. There is always hope and so long as you hold on to it, you will find a way. Does that mean life will be perfect? Hell no, it doesn’t. But a perfect life doesn’t exist. A life without struggles is a life un-lived, it’s a life without lessons. Nobody asks for horrible things like these to happen. Am I terrified? Yes. Would I wish it all away with a magic wand if I could? Absolutely. But I’m going to try my damn hardest to work with this. I will find the silver linings, I will take this storm head on and use the rain to help make things grow. I’m not going to come out of this the same person I was before, and that’s okay with me. I’m going to try my hardest to be stronger for it.

[shannons-striving]

FEARS & ANNIVERSARIES:

I haven’t updated here in a while, life has been hectic. I have nothing too major to report but I’d just like to blog.

I’ve been home ever since my last update, it’s been so lovely. I’ve had to go into hospital for checks and things but so far, so good. I have a big day Monday. My PICC line is being fitted, I’m having a lumbar punch, a bone marrow test, and likely a blood transfusion as I haven’t needed one for a while and my hemoglobin levels are just about stable. Not too nervous about the lumbar and and bone marrow, blood is easy, but the PICC line will be a new thing for me. Hopefully it’ll be easier than the constant butchery of my veins, they just do not want to co-operate. Oh, I will also be starting chemo pills, that kinda scares me.

Symptom wise I’ve been pretty much okay. Very mild nausea, fatigue, slightly tingly toes and fingertips, these are all pretty normal ones. They’ve been very manageable. In fact, I feel better now than I did when I was admitted. When I was admitted I felt so weak and tired, my hemoglobin levels were 51, they like them to above 70. I was so anaemic. Hemoglobins are the red blood cells that carry oxygen around your blood. Still learning all of this medical stuff.

I have a small dose of chemo on Tuesday then we wait for the results of my bone marrow and take treatment from there. I am just so so beyond terrified to find out. I’ve probably said this before, but sometimes I wish I never got diagnosed, that I could live in the ignorance. I know that’s stupid, I know I would’ve gotten really ill, probably collapse, and have worst prospects but damn, ignorance is bliss. 

Taf and I celebrated our 8 year anniversary yesterday. Wasn’t the most fun day as I was stuck at the hospital with him for most of the day. The ward was empty which is fab! Means nobody is ill enough to be there. They had free dominoes delivered for lunch and that was so nice. TCT are incredible. Once I was okay to go we popped into Asda and got stuff to make a steak dinner. Asda was weird, I didn’t wear a wig, just a snapback and people looked. I know people are naturally curious, I know that it’s not a judgement, and I know that I shouldn’t feel ashamed or scared. But I do feel quite weird about it. I’m just so thankful to have Taf in my life, I get really emotional thinking about the years we’ve spent together and how much I want to be around for more.

2 friends shaved their heads for me Thursday, that was rad. Life with no hair is undoubtedly easier, but I really do get massive hair envy when I see someone with beautiful hair. We raised a little bit of money for TCT, so that’s awesome! I’ve had a few people do some fundraising and it melts my heart. We’re planning some bigger events soon! 

Feelings are just all over the place right now. A lot of people keep asking me the same questions that I’ve answered over and over again and it’s starting to get to me a little. I know it’s out of concern, but please check my blog or Facebook before asking something, if it’s not there then crack on. I’ve started to repeat myself to people and then I freak out thinking it’s chemo brain but It’s just because I talk to so many people.

I’m just a bit anxious and sad. I know these days will happen and that it’s a very normal response to the huge changes I’m going through, but it hurts nonetheless. 

I’m seeing pals tomorrow for a little get together, that’ll be nice. I just can’t wait to get Monday over and done with and at the same time I just want to run and hide and not have to do any of this. But I will persist, I will fight, I’m not going to let this shitty disease dictate me. Time to start making some small fun plans and stop being so afraid to have a laugh.

[shannons-striving]

Stars have always had a weird significance in my life. Growing up I used to stargaze with my Dad and he used to teach me about all the constellations and that there are more stars in space than grains of sand on this Earth, It used to fascinate me so much. It’s always given me a sense of comfort to know how small we are in this world. I remember when I was little and first learning about the concept of death and dying and being so afraid to die or to lose anyone and my mother told me that when she died that she was going to be the biggest brightest star in the sky. The day she passed away I looked at the stars and remembered that. I haven’t told very many people that. I told Rachel and Lowri about it around Mother’s Day this year, since I was really feeling down. A few days later they presented me with one of the greatest gifts I’ve ever received. They named an actual Star after her. I’ve never been so emotional over a gift and I’ve taken ages to decide if I wanted to share the story online since its so personal to me, but I do. The lyrics are from the song Stars from Les Miserables, a musical that I’ve really gotten in to over the past year. It’s one of my favourite songs from it, it sums up the comfort and safety I feel from the night sky. I changed my username to ShanInTheStars just a few days before my diagnoses, I wanted a change in my life and boy did I get it. There’s no real point to this post, it’s sloppy and emotional. Just things about me I wanted to share. I’m not ready to join the stars yet, until then I will keep them close. Lots of love to @lorryybab for my amazing mug and of course to you and @automaticrachel for one of the most touching gifts I could’ve ever hoped to receive. I wish she was here to see how amazing you both are. 🌟 #stars #friendship #acutelymphoblasticleukemia #chemotherapy #leukaemia #lesmiserables

[shannons-striving]

HOME: I’m writing this at 4:36am on my phone because I just can’t sleep. I know I need to sleep, I know I need to rest, but I’m just so excited. I CAME HOME TODAY! I’m only home for the weekend. I have to go back Monday for blood tests and probably a transfusion. My haemoglobin levels are low. Chemo then starts again on Tuesday, not sure if I’ll be an inpatient or outpatient for it. Being home is amazing, emotional, and scary. My neutrophil levels are DANGEROUSLY low making me incredibly prone to infection. I’m being as vigilant as humanly possible with hygiene and common sense. Though it’ll very likely happen anyway at some point. I have to manage 27 pills per day, checking my temperature twice a day, and just be on my guard. I can’t be around anyone who is remotely ill and anyone who is around me needs to be super clean. If my temperature goes over 37.5 degrees celsius, I need to recheck in half hour, if it’s the same, I need to ring the ward I’m on. In fact if I have any new or strange symptom I have to ring. The next stage is getting me to the closest hospital and on antibiotics straight away. I’ll then travel back to the TCT ward where they’ll take it from there. And any obvious medical emergency like chest pains or collapsing means phoning 999 immediately. This shit is terrifying. My hair is falling out and thinning like crazy now. So I dipped my toe into the water and shaved the side! Something I’ve always thought about doing. I absolutely love it! I feel so punky and androgynous. Taf did his lil side with me and now we’re matchy matchy. He’s been brilliant. The whole family have been brilliant. Cooking and cleaning for me. I can’t even describe how nice it is to eat proper food. I also got to see my kitties! My heart could’ve exploded. I’ve missed having animals around SO much. Pets can be so good for your mental health. When I first got admitted to hospital I genuinely felt like I had gone there to die. To be here now, after 4 weeks total, and 20 days in on my first chemo cycle, is just incredible. It’s gone by really quickly, the treatment is going by faster than I thought it would. I think I’m responding well so far. No sickness or nausea, not needed any pain relief for anything, just hair loss. Which I’ll take over feeling like shit! I am noticing myself getting weaker, though. That’s going to happen when I’m neutropenic and anaemic. Stairs are harder, so is walking and standing for too long. I’m also a little shaky which is annoying as hell for me since I love to write, draw, do hands on things. It’s been manageable though. I’m not planning to do anything other than sit my neutropenic ass at home or at Tafs, and eat, sleep, and rest. That’s my new motto. It makes me a bit sad because my heart wants to run around and do everything I can, but that’s not sensible and I have to be smart. If I’m going to best this, I’m going to give my body a fighting chance by any means possible. Although my body is physically weak, I’ve never felt this strong. Being home and happy is just another reason to fight. I’m still so scared, but I need to do this. For me, for Taf, my family, my friends, everyone I love. Cancer can just fucking do one.

[shannons-striving]

Chemo Dreads:

Today was my third round of Vincristine & my least favourite thing in the world, Daunorubicin (the red one). This is the chemo day I hate most. I don’t know why? I think because maybe last time it hurt really badly due to the leak that happened in my hand. Maybe it’s because these are the hair loss drugs, the drugs that make you sick. I just hate them. I hate watching that red poison flow into me, I hate that I need to do this to recover.

It went smoothly, I shouldn’t complain. I still haven’t felt any really nasty side effects, apart from a bit of a peaky stomach tonight. I just know that they’re to come and it’s so hard taking life this slow. Being in the moment is hard. I need to practice mindfulness more often.

Today was better than I expected at least. I saw Taf, Ry, Rey, and my usual fam! Got the worlds cutest candid of Taf and Ryan messing around. Took a photo of some gorgeous flowers, and painted some mini canvases. I’ve been mega arty since being in here, I think it’s helping. I’ve been into painting, sketching, taking photos, everything but what I love most, and that’s makeup. I don’t know why, I’ve been kind of scared about putting it on. I’m afraid I’ll loose my lashes if I touch mascara or that filling in my brows will make them fall out. I know that they’re probably all falling out regardless, and I should probably just have fun while I can really. I just don’t know. I think I’m having some body image issues.

It makes me sad not to dye my hair, really sad. My hair and makeup feels like such an integral part of my identity. I know a lot of people find that shallow or vein, but it’s truly an art form to me. I really like to express myself in those ways. That being stripped away, it hurts. I have found some awesome wigs though, and one is being made to look exactly like my hair before I cut it short, that’ll be kinda cool. I’m hoping that once they arrive I’ll feel more confident in how this is going. I’m truly afraid of being so ill that I won’t even be arsed for any of this, which will probably happen. I’m just really scared about it all.

I just hope all goes well, there’s a chance I could be home Thursday if so!

- All of my love to everyone keeping up with me!

[shannons-striving]

Food & Friends:

I’ve had a good day today! it’s been 14 days since I’ve started chemo and I think it’s fair to say that it’s not as bad as I Initially expected. I feel like when you picture chemo happening your mind goes to TV montages of people violently throwing up, clumps of hair falling out, people looking pale and thin with sunken faces and dead eyes. It’s true that chemo does cause nasty side effects. I don’t doubt I’ll feel shit at some point, but I need to remember that TV/media dramatises everything.

Yesterday I started to notice that my hair was looser, my taste was slightly off, and, my muscles a little weaker. On refection I think I was thinking too much into it. My legs feel okay today, so is my taste. Hair is still coming out a bit more easily and that’s freaking me out, but it’s not very much at all. I’m probably overanalysing everything as usual.

Today I went on day leave (still feel like a prisoner when I say that) to Tafs! We stopped off in Tesco for some food and ingredients on the way. I had a little bit of a panic attack in there. It was really busy, people everywhere. I’m hyper aware of germs and infection risks now. A normal illness can wreak havoc with me if I catch it, which I likely will at some point since they’re killing my immune system. Being around so many people and carrying this invisible secret is weird. Seeing people do normal life things gets me really jealous and sad. Also, people can be inconsiderate and gross. I kind of wish I could zap the fact that I have cancer into everyones head as I walk by. It’s not that I want a huge sign around me that says ‘THIS GIRL HAS CANCER!’ I just want people to understand if I’m acting kinda weird in public or need extra help with little things. I don’t want pity or sympathy, just to be understood. The world just doesn’t work that way though.

I was fine once we got back at Taf’s house. He made me his excellent Hawaiian sandwich for lunch, then he and Nick made an OUTSTANDING roast dinner. Ciaran made us a beautiful Eton Mess style dessert and all in all it was just amazing. Taf has become incredibly good at cooking since I’ve been in here! Everything he does he seasons to perfection and bulks it up with extra calories when possible. I’ve become such a foodie on steroids. It’s probably going to suck when I wean off them. I’m just happy to be gaining weight for now.

Seeing the boys cheered me up so much. We didn’t really do a lot of anything, which makes it sound boring. The normality/comfort of just chilling somewhere that isn’t a hospital is priceless to me though.

It was Fathers Day today and I didn’t see my Dad, I’m seeing him tomorrow. I want to get him something really special but I have no idea what. He’s my absolute rock. I could not do any of this without him. He deserves the world and I wish I could give it to him. I just want to get better for him and knowing that it isn’t in my control is heartbreaking. I’m so lucky to have him.

All in all, I had a good day. I got good grub and good friends. I’m grateful to each and every one of you. I hope one day I can make up for the crazy outpour of love I’ve received from everyone.

Oh, and another important update! Today I found out that I actually like brussels sprouts? I must have been in denial for years or something because I used to just refuse to eat them. My hungry ass demolished some earlier. LIFE IS WEIRD.

Enjoy some food snaps and a picture of the most beautiful strawberry!

[shannons-striving]

It’s the little things. I’m appreciating everything so much more lately, everything is more vibrant than before. I really don’t know where I’ve pulled this gunky positive attitude from. I want to harness it while I can. I’m feeling well in myself, only real problem is the swelling in my hand. I’m probably going to be able to go on day leave tomorrow which is massive for me right now. Spoke to a lovely new person today who is going through the same treatment and it made me happy. I’m still scared about it all, but I’ve decided there’s no point in worry. Life could end in instant for anyone. I’m here in the now and that’s all anyone is guaranteed. So always make sure to stop and smell the roses 🌹 #acutelymphoblasticleukemia #chemotherapy #all #leukaemia #roses #mindfulness

[shannons-striving]

Helping Hands:

So, the pain in my hand I’ve been feeling is justified. They think a bit of Chemo may have leaked past my vein, so my hand is all messed up. They’re going to be treating it with creams and we’ll see how we go, it’s fine. It’s just irritating more than anything.

Today was lush though. Lowri came over early and we had a pamper sesh, nails and a facemask sort of deal. I adore her so much, she has the most nurturing nature and she just brings me peace. I’ve never had a really close female friend until her and I honestly trust her with my life, I would fully take a bullet for that gal. If you’re reading this Low, (which I know you might not be because you’re very emosh over these) I love you so much. You’re not bad either, Ry.

Taf’s wonderful mother surprised me with some LUSH goodies and doughnuts! I’ve been so spoilt by everyone, it’s ridiculous. I’ve also been going ham on the online shopping, too, because life is short and who needs money anyway? I know I’ll regret saying that later.

Taf helped me have a lovely bath which was much needed since I couldn’t get my one hand wet. I’m constantly in awe of his selflessness. I can’t even put into words how much I love him. I didn’t know it was possible to feel this way about anyone or anything. He also made my bangers and mash ready meal extra tasty by spicing up the mash and adding more butter. I’ve been eating an insane amount on these steroids! My auntie brought me the most stunning cherries. I haven’t eaten cherries in years and they were so juicy and delicious. They looked like little gems and the sight of them made me so happy that I had to take photo. It’s mad how the little things can cheer you up so much in here, I never want to take anything for granted again.

This whole ramble is all a bit soppy and probably uninteresting. I just wanted to capture today because I do think I was happy. Maybe one day I’ll need to look back on this and prove to myself that I can be happy. It can feel silly to hope and dream right now, but I think it’s powerful. I think I’m starting to understand all the fighting terminology around cancer, it makes a lot of sense. It used to seem a bit pointless from the other side, I was cynical. It’s everything to me now.

P.S, they told me I could stop peeing in bedpans. YAY!

[shannons-striving]

Looks

Today is chemo day 10. No treatments or anything today, just the usual concoction of drugs and checks. Symptom wise, no major changes, feeling a little bit nauseous which is always really horrible for me. It’s weird though because the steroids make SO hungry and the food portions here are tiny and just don’t taste good. I keep fantasising about all the food I can make when I get out of here. Although, I’m going to have to be so so careful about my diet due to infection risk. 

I keep thinking about hair loss today. I’m so worried about the chemo changing how I look. For those who know me they know how much I love my hair and expressing myself through my looks. The thought of actually looking like I have cancer is scary. I know there’s wigs and ways around it, but I also fear that I’ll feel so crap that I just won’t want to bother. Losing weight is another scary one for me, I’ve always been naturally thin but I don’t actually like looking thin, I’d rather have weight to spare. I don’t know. This whole rant seems pretty stupid considering the alternative is death. I know my hair will grow back, I know I’ll still be me, it’s just that niggling thought.

A side of me is also really worried about everyone in my life seeing me ill. We’ve all done it, seen someone out and about who is clearly going through something with their health and thought privately to ourselves ‘oh god, that’s awful.’ I don’t want that to happen to me. I know it’s all out of my control though. I’m afraid it’ll put a strain on my relationship even though I know full well that we’re way past everything superficial. It’s just a bit shit. I should be worrying about more important things, but I just can’t shake this today.

[shannons-striving]

Bone Marrows & Dominos:

Today was chemo day 8! I started the day in the most foul mood. I was tired and so very done with everyone. People constantly checking on me and getting poked/prodded, really gets to you after some time. I’m such a private person, too. I value my space so much.

I got my second lumbar puncture/bone marrow test today. I should get some small indication of how things are going tomorrow. The test itself was fine, again. I really really don’t find them painful, just a really odd feeling. It’s actually kinda nice to get some sedation and gas and air, it’s a good excuse to be high for a little bit. My dad came in with me, so I was a bit worried that it’d scare him. I know he didn’t like the parts where I winced (from the pressure/nerves) but It was nice to have him there. I think I handled it really well. I hopefully won’t need another one for roughly 2 weeks now! 

Lowri then popped over, followed by Rey, Taf, Arwel, and, Demi later on. It was good to hang around with them. I bought us all a Dominos, I’ve been super hungry! The steroids must be working wonders. I really hope that keeps up. 

-I suffer severely with emetophobia (phobia of vomiting) so the nausea side of chemo is something I want high control over. They say they have a variety of anti-sickness meds out there, and we’ll do everything we can to help me with it. The thought just ruins me.

There was a time where my phobia/anxiety/mental illness in general drove me to a very dark place. At the end of last year I remember being on the phone to Samaritans, absolutely desperate. I didn’t think life could get worse. When it rains, it pours, eh?

I feel like in the past two weeks I’ve become a different person entirely. I don’t know how the hell I’m doing it. But I know one thing for sure, if i can get through this then I can get through ANYTHING. I plan to grab life by the balls from now on. I’ve been handed enough shit these past few years and as guilty and as self loathing as I can be, I know this is not fair. It’s not fair that I’m going through this. Nobody should.

Tomorrow I get my 2 intravenous chemo drugs. They make me most nervous. Again, there’s no pain. I just hate watching that neon red poison pump through me. It’s just knowing that it’s circulating me. I think the spinal injection is confined to just the spinal fluid, where as the IV’s will be pumped around all my organs. That freaks me out. Good news is that my Reflexologist will be here tomorrow though! So at least I’ll get a really nice foot message out of it. It makes a really nice little treat. Some people really do swear by reflexology. I want to look into lots of holistic/complimentary spa treatments to try out once I’m able. Really interested in reflexology, reiki, and acupuncture. Someone be sure to let me know if you know of anything that could be beneficial! Even if it’s just a massage, facial, and a manicure. I’m so keen to do things that are just self indulgent and nice. If this isn’t an excuse to treat myself, then what is? I’m very keen to find some perks/benefits to cancer. TREAT YO SELF. 

All in all, a good day, I think. I’m riding the waves as they come and I don’t think there’s much more I could possibly do to try and help myself. Going to talk to the psychologist again when possible, and just pour out some feelings. I think what I need more than anything right now, Is to be reaffirmed that I am doing okay. People keep telling me that I’m doing great, but I want it from the professionals. I’ve become a bit of a teachers pet and it’s really stupid. I’ve always had this weird egotistical drive to impress people, even though I don’t know how to in this situation. I always want to start asking the hard questions about my prognosis and how they think things currently look. But... that’s a bit scary and soon right now. Oh well, here’s to tomorrow! Fingers crossed all goes well and at the very least my feet will feel amazing.

[shannons-striving]

Just going to start typing about my day. I really don’t know how to start these things, I’m not the most eloquent writer and this whole thing is pretty daunting if I’m honest. But here goes...

Today I was allowed out of hospital for a few hours! YES!

Leaving here brought me more anxiety than I had imagined it would. I starting shaking waiting to be picked up, I felt like it’d never happen. Going back into ‘society’ when your world has been shaken is weird. Everything felt so vivid, I felt like everybody was staring at me, that they knew, pitied me, even. Even though I don’t yet have many symptoms or physical characteristics of cancer. I watched people walk around going about their daily lives with curiosity and envy. It just sort of blows my mind that I’m walking around with this huge weight, this disease that nobody can see, yet it’s in me.

Getting to Tafs place was like the most surreal homecoming. They’d cleaned it spotless and everyone came to see me. I adore these people more than I can say. He made me a beautiful Sunday dinner! I’ve missed his cooking, he does incredible mash. 

We didn’t really get up to much, chilled, cuddled in bed, and just tried to feel normal for a while. I suppose we’ll get a new normal soon, but right now, I’m grieving badly for the old one.

Going back to the hospital resulted in tears, parking up was the worst. I just feel this impending sense of doom that every time I go out that it’ll be the last. I’ve never been through so many emotions. I’m angry at my body for this, I’m angry at the world. I feel like a burden to everyone I love, I feel like I’m going to end up dying and destroying everyones lives, and the fact that I cannot control it makes me insane. 

Ciaran brought over some wood planks and an axe earlier so I could vent out some rage, It felt good. I’m so lucky to have the friends I do.

Currently freaking out about more chemo tomorrow, so far i’ve tolerated it well, but I know it gets worse. Trying to take each day as it comes and living in the moment is HARD. I’m emotionally drained, yet still feeling everything at once. Just a horrible cocktail of sadness, hopelessness, anxiety, fear, dread, grief, you name it. Trying really hard to stay positive. So many are calling me brave, I don’t feel brave. I feel like once you’re in a situation like this, survival kicks in. I don’t feel I have a choice in it. it’s really flattering and encouraging none the less.

Peoples hopes, prayers, and well wishes, have never meant a huge deal to me. I can’t find comfort in religion, I don’t really believe in fate or the power of good vibes, If I’m honest. I think the universe is a big clusterfuck most of the time. But despite it all, I think I’m a hopeful person, I think I’m an open one, too. I do want to believe that there is something to this life. So whenever anyone messages me and wishes me well, I truly appreciate it, now more than ever. I know that it’s all other people can do for me right now, and the fact that they’re there means the world. I may be stuck in this body, but I know I’m not truly alone.

(also lol at our shitty bee movie meme, it just made me happy okay)

[shannons-striving]

This is an article that pretty much sums up my first week here! Saves me having to re-explain a lot of things on here. Please give it a read if interested!