Currently sitting in the Beatson cafe with my discharge information and a wee latte, feels quite surreal? Even got a bit teary as I left the outpatient department. I really wish my mum was here, I miss her.
I had a lymphoma clinic appointment today, with the wonderful nurses that looked after me (my last consultant/check up was last month) this one was just to see how I’ve been, any concerns for the future and just some wee leaflets to take home. So it seems the cancer chapter of my story is complete, which is quite daunting as that was my life for a long time, conversations, structure of your days, appointments, thoughts, these were always intertwined with cancer and now…no more? My nurse Rebecca (who was an actual ray of sunshine and always had my best interests at her forefront) has said it’s time to move on and get ‘closure’ the check ups were still wee pulls back into that life and now it’s time to start afresh. I honestly hate cancer, like so so so much and to be honest I’m also petrified of it, however the treatment gave me a whole year with my mum and Dexter, it’s all very confusing and mind fuckery!
I think this year is all about changing, Dex will be starting school (which is what mum was looking forward to so much!) and the uncertainty of drop offs/pick ups and all the stuff in between plays heavily on my mind (mostly at night) I want my mum here, the healthy mum, who could do all this with me, navigate motherhood with me so that I didn’t feel so alone? It would be so much easier with her here, why did she need to have Glioblastoma off all things! I could expect her to do things for us, as selfish as that sounds, but that’s how she would have been, no need to ask, just sort of take it for granted that she would. Which is a struggle, as that’s not even an option anymore, no back up. Just constant late night thought’s of the future and the shoulda, woulda, couldas! I sometimes feel like I’ve lost a lot of opportunities, can I progress in my work if I can’t even make it in for 830 in the mornings, I’ve never done an interview without her driving me there, testing me on the way there. Will I have a 40th party when the time comes because she planned all my parties and made everything from scratch? I know this all sounds trivial and I’m wallowing in self-pity ha! but this is a safe space and I always just wonder what a different life we would have had if she was here.
Anyway I’m just having a wee ramble so that the thoughts swimming about have a wee outlet, because as Charlie Mackesy has said ‘Really there’s just now and here’ which is going to be my 2024 mantra!
I don’t read my posts back, so there’s probably a lot of repetition of thoughts and feelings, but just another wee glimpse into the downhill journey that will hopefully be an upward stroll soon.
Well the 30th April rolled around pretty quickly, one year that you were taken from us, honestly Glioblastoma is a vile cancer that leaves the person as an empty shell of themselves, awful.
So the year so far has been fine, nothing too exciting to report, just keeping busy (or distracted). Filled the months with lots of work, lots of fun with Dexter, more outdoor swimming and adventures, being consistent at the gym, rewatching Buffy which is my tv security blanket, hanging out with my friends for overnights and cocktails, all in all a pretty normal life.
But there’s that feeling, a loneliness, a sort of empty hole in myself. It’s like a homesickness that’s tinged in everything I do. I think the best way to describe it, is if you’ve been out sledging and your feet and hands are bright red and freezing and all you can think of is getting home to a bowl of tomato soup or some lentil with big crusty tiger bread, but you never get it, it’s never in reach. It’s a feeling that will never go away, it’s a homesickness, a loneliness that can only be taken away by one person.
I guess people try and fill that hole with alcohol, drugs, self-sabotage, chasing love in everyone (meaning sexy time!) working constantly, or maybe they are just trying to soothe it for a while. I’m just trying to focus on how to accept it, rather than to fill it, as I know that it’s impossible.
Spring has been quite hard, with all the flowers coming up and the weather getting better, Dexter getting older and just becoming this amazing little person, it feels like new beginnings. But you’re missing from it. I have a check up next week for the Beatson (which I actually strangely like) it’s a comfort to be looked after and checked up on, I’ve always felt like that there, a sort of safe space? Some may think that’s a bit strange but when the check ups finish I know I’ll feel a bit lost, fear of recurrence and health anxiety is a bit of a minefield and I try to think I’m going to die as well as little as possible.
Gratitude, being with people who care and make an effort with me and Dexter, nature, Oscar walks and furry cuddles, kindness and self-healing are my main focuses. I’ve been a wee bit out of sorts since the anniversary, a bit stressed, sensitive and emotional so just need to try and realign myself. To be honest, I think a grief bomb was due and it happened after an amazing day at Blair Drummond, funny how that happens. I think your body and your mind is just like, you need to let it out, so I listen to it. This post was just floating around in my head, so I had to get it out or I’d be all twitchy, but there was no seismic shift on the 30th April, no signs, no wailing, no important event to memorialise it, it was ‘just’ the day that you died.
This blog was just mainly for me to get all the jumbled thought’s out of my head and to maybe be able to process some of them. So I thought I could just keep it going and can be my own homemade therapy (which I probably need professionally!) I don’t really advertise it so who know’s who’s giving it a read but lets keep going and see if there’s any uphill moments..
Having a baby changes you, having cancer changes you, going through grief changes you, having it all happen at once really frikkin changes you, physically and mentally, more so mentally I think. I am quite a self aware person, the past few months I’ve actually been reflecting and trying to figure out who I am, I think losing your mum makes you wonder how you’ll be able to go through things without her? Life sure as hell goes on, life goes on the second they die, an hour or so after she died I had to take my dog out and pick up his poop, like how bizarre is that? You’ve literally gone through like the most traumatic event, but your dog still needs to go out and poop. Total mindfuck I say. It’s been 8 months now and life is still going, I’ve survived 8 months without my mum, who knew that would be possible? It makes you feel guilty and ashamed that you carry on, it’s very confusing. Grief sucks.
2023 will be the first year my mum won’t be in it. None of the photographs I take (which is A LOT) will she be in, I’ll have no messages from her this year, won’t hear her voice, absolutely nothing will involve her and that’s frightening and makes the bit at my ribs really really sore.
Well from my reflection I have learned about myself..
I am a people pleaser, I don’t have many boundaries, I dislike confrontation, I am an empath, I try and find external validation, I get obsessed with people, tv shows, hobbies easily. I 100% have dad issues due to no male figures in my life after my grandpa died, I have too high expectations of others which leaves me disappointed, I’ve made mistakes and hurt people, I am hyper-independent and don’t ask for any help, I am quite introverted and prefer doing things alone, but I also want people to like me.
I’m not sure if reflection is supposed to be things like this but I guess this is the type of stuff I need to change and work through, are these trauma responses from childhood/life or just normal? (see I told you I need professional help!) Anyways, I’ve also chosen some things that I think will help and that I want to achieve. Funnily enough I have always been a very positive thinking person. I love ‘The Secret’ and the power of manifestation, my copy of that book is so worn with sections highlighted and notes written all over it. So this year I really want to get back focusing on that, because I know it works! (It’s how I got the job I’m in now) I love a crystal and all things spiritual, so I’m actually going to learn to do reiki professionally and see how that can help me and maybe try it on others! Cold water therapy is going to be a big one too (I hate hate hate being cold) so it’s a good way to get out my comfort zone. Breathwork and meditation, mind over matter vibes, gimme all the Wim Hof life. Gut health and wellness retreats, being in nature and walking Oscar. Spending time with Dexter and making as many memories with him as possible, making sure he feels loved and safe. I’ve started going to a wee grief group for 18-35s which is good, hearing other peoples stories and how similar/different their feelings are. Meeting new people, I’ve had such lovely messages from people who I hardly know, it’s heartwarming. Leaving the negativity and chaos behind.
Anyways, I do realise this is all quite self-absorbed but why the hell not, the only person that knows you and can look after you the way you want is yourself. So let’s see how I get on in the downhill at 30 life.
So my mum was diagnosed with Glioblastoma around November 2020 and took really well to the surgery, radiation and chemotherapy! she was a wee trooper, this type of cancer was terminal but you kinda never give up hope? Some stories people got a good 5 years and I think we just all kind of assumed that would be her and she would be the miracle story. As weird as this sounds, I was really lucky to get cancer at the same time, I was off work for a full year because of it and basically got to spend as much time as I could with my mum. From about the November 20’ to about December 21’ she was basically just her usual self, tired from chemo, wee bit slower and couldn’t drive but other than that was pretty normal! We could still go out and about, make lots of memories and she could play away with Dexter and make him happy.
There was struggles, she had her bad days and remembered she was dying and that she wouldn’t be around for things in the future, I felt that she held back from a lot of things because she didn’t want to get closer and bond to us because it would be harder to leave us. I think I was a bit hard on her and snappy because I just wanted her to make the most of everything, but it must have been to hard and a total mindfuck in your head knowing that you won’t be able to do these things with us forever.
The deterioration after Christmas was actually quite quick, but because we saw her everyday I don’t think we noticed as much as the ‘outside world’ would. She was now immobile, had a wheelchair and really wasn’t able to do anything herself. Which is cruel because her mind was still there, which is ironic as the tumour was eating away at her brain. She must have felt so helpless and angry. I was angry, I was angry at her too for not getting up or forgetting things and not being able to talk. But I read somewhere, I wasn’t angry at her, I was angry at the disease inside of her, changing who she was. To be honest, I just wanted my mum, my real mum, who popped up in the car with underwear and socks for me (never had to buy these things before) and nappies and a wee toy for Dexter, missed the real mum who could walk Oscar and phone me and text me every minute, missed the real mum who’d spend hours crafting things for me and becoming obsessed with something that it was all she focused on! The real mum who would cut my grass and paint my fences, who would clean my house or do the dishes for me. Who could look after Dexter unsupervised and take him on adventures. The worst thing about cancer is how they take that person away from you even when they are still here, you grieve for them when they are still alive and then feel guilty about it because you can still talk to them.
It really was a hard time, and I probably was quite selfish and didn’t think how mum would be feeling, or maybe I just didn’t want to accept the fact that she’d be gone? I think will probably take years of reflection and growth to work everything out that goes on mentally in situations like that.
Angela Burns, my mum, Dexter’s crazy gran died on April 30th 2022. Nothing prepares you for it, the feelings and emotions you have, the guilt and confusion that you are actually still standing, or that you can walk the dog the same afternoon. Grief is strange and personal, unique to you. Only you and the person that died has that bond, those memories, those conversations, that love. No one else, she’s someone else’s mother, someones sister, someones friend but you’ll never all experience the same grief. That’s why grief is lonely, that’s why grief changes relationships, that’s why grief changes you, it changes your mind, your personality, how you react to things, friends become strangers and strangers become friends. And you feel guilty and confused and sad and sore and every emotion that’s ever been invented I think. And it physically hurts, I feel it on my right side first, like i’ve been stabbed and then moves up to my chest and my throat like i’ve been crushed.
Today has been 6 months since she was unlucky with cancer, it wasn’t a ‘battle’ there wasn’t a ‘fight’ cancer is just your damn luck. I think these 6 months i’m still in shock and disbelief, I don’t think the finality of it has sunk in, and i’m quite scared for when that moment hits. Sometimes i’ll text her a nice picture i’ve taken and tell her about my day just for my own comfort, and of course I know that she won’t get it, I don’t forget when i’m texting her that she won’t reply, but maybe half way through the day i’ll check my phone for the time and i’ll think to myself ‘That’s weird, I wonder why my mum hasn’t text me back’ just for a split wee second.
I’m not sure how i’ll be, or what the future will be for us now. I wonder everyday how life has changed now she’s not here, and what it would be like in a parallel universe if none of it had ever happened and we were just living life normally, what kind of version would my life be, what version of myself or Dexter would there be. It’s so so strange. I just know that I miss her every day, I think about her constantly and I’m scared without her. Being in the car is the worst, driving home I would always phone her, that’s when it hits the worse. A grief bomb as they say, everything is bittersweet now, all tainted with a wave of sadness. Someone I know, said to me the other day, that I had a ‘veil of sadness’ over me which was quite profound and emotional as I felt she actually seen me and it’s ok to portray the grief.
My mum and I had out issues like most mums and daughters, I felt she let me down over a few things and she knew herself she did too, so I’m not pretending we had the perfect relationship like the Gilmore Girls, but she was mine and I was her’s and I know that I will never ever be that loved ever again, which is heartbreaking. No one will ever love me or care for me like a mother does. The most profound part of my downhill at 30 journey.
I will miss you forever and for what should have been.
So when you’ve got cancer they don’t fuck about, I think within the space of two weeks I had my first appointment at the Beatson to discuss the treatment plan, ECG, a CT scan, a PET scan and an MRi. Countless bloods taken, weight, height, blood pressure, all the stats. Signed a form to say that chemotherapy causes death and if I’d be ok with that, erm sure? Honestly you just get flung right into the deep end, and I actually preferred that, no time to think or dwell!
First chemotherapy was a long one as they have to monitor you pretty closely incase I took an allergic reaction to one of the drugs, then the nurse administers the ‘red devil’ part of it by hand because it’s so highly toxic. The joys! I actually felt ok after my first session, I just went home and ‘relaxed’. At night though, I was really scared to go to sleep, firstly incase I never woke up and secondly how I would feel when I did actually wake up!
There’s a lot of medicines you need to take afterwards as well, steriods, antisickness and one that was like a grout med! It was all very odd to have so much medicine after never really having an antibiotic before now.
All the usual happened, hair fell out pretty quickly which actually wasn’t too bad as it was out of my control so what could I do anyway? I felt pretty sluggish and gross the few days afterwards, swollen and just full of poison. It was hard work, but you just had to get on with life, I still needed to get up, look after a toddler and make sure he felt as normal as possible with such a big transition going on. Many people will look in and say ‘I don’t know how you do it’ but there isn’t really a choice is there? If I don’t do it, who will? There isn’t an army of people in your house, and even if there was, they have their own lives and their own struggles. Cancer is a very isolating and lonely club that you really just have to go through yourself and see what happens. Well that’s the way i muddled through anyways.
Near the end of my treatments, I got covid and to some people that might not mean much, but I was really poorly, so poorly. My sense of taste and smell disappeared and still hasn’t returned, which again is quite soul destroying. One of my chemo sessions had to be delayed until I was negative, and I was so sad that I was missing it! You just want them to be over and done with as soon as possible, and any delays just mean you’ve still got to keep going through all the blood tests, the needles, the bald head and face for even longer.
One day I think my wee mind just gave up, it wouldn’t let my body move at all and it was like I was paralysed in my bed, even lifting my head up was a struggle. Nothing was sore, there wasn’t any pain. It was more of like ‘enough now’ my wee mammy had to get a lift up and get me a glass of water and an orange because I was just stuck and heavy.
At the pre-assessment for my last chemo, I didn’t hold back and said I am so tired, dizzy, weak, blood pressure was so low, coldsores and ulcers over my mouth, just so rundown. I had to take the lift to the room for the first time (I had made a promise to myself to always take the stairs!) I was also on heart meds because they’d noticed some damage to it. I just felt awful, I think with these treatments everything just accumulates and just makes you feel lousy near the end. When I got home, my specialist nurse (who was an actual angel throughout) said enough was enough and we aren’t going to put you through your last session, I was pretty shocked. That means I was done, done with chemo and all the bloody cannulas?? What if it hadn’t worked, what if this last session was the one that would get rid of all the cells for good? What do I do after chemo, I don’t have the security blanket of the beatson and all their tests? Honestly your mind goes into over drive and contradicts itself. But I was glad the decision was taken out of my hands and I could just heal and wait for the final PET scan to see what would happen next.
The all clear, my last pet scan on the 14/10/21 showed a complete metabolic response to the treatment. The cancer was gone. I was one of the lucky ones. But now what, what the fuck do I do now? How do you deal and process the last 6 months? Especially when the only person that understands isn’t ever going to get the all clear or ever be one of the lucky ones? This was a wonderful thing, but chemo and the mental struggles that come with it is definitely another thing to add to the wonderful list of downhill at 30.
So just before my wee gran died, we found out the ‘shadow’ in my mum’s brain was actually grade 4 glioblastoma, terminal, 12-18 months. She told me while I was at work and I sobbed, 12-18 months that’s no time at all?!
All you can do is be positive, don’t read statistics, and do what you can to support her. My mum went through radiation and countless rounds of treatments, and do you know what, she actually become ‘stable’ for a wee while!
So that diagnosis was just at the end of 2020, so we just continued on with life while we could after just cremating my gran. I started to get a wee bit poorly around February time, nothing that I was worried about, just a wee bout of tonsillitis which I frequently got anyway and would just go away on it’s own, I’ve actually only had antibiotics once in my life and that was when I got mastitis while breastfeeding. So I never phoned doctors, just got some lozenges and used salt water! It didn’t go away at all and this had been weeks by this point, with covid going on, the doctor said to send some pics over which I did and got prescribed some antibiotics. They didn’t get any better at all, they actually got a bit worse! One of my best friends got quite concerned and even phoned the doctors pretending to be me so that I would get an appointment, which I did. At the appointment, she took a wee swab and referred me to ENT which would take another few weeks, again my friend was having none of it and phoned the ENT clinic and got my appointment brought forward.
At the ENT appointment, they put a wee camera down my throat and had a wee peek, it didn’t take long but she said the tonsils needed to come out. I was like well that’s unusual for an adult in their 30s to get their tonsils out? And let me tell you, the recovery was ACTUAL TORTURE, I would not wish it on my worst enemy, was so so painful and I could literally only eat an ice chip for days. The pain is so awful, and honestly think I have trauma from it!
While I was still healing, I got a call to say that my follow up appointment was coming forward and that I could bring someone with me, alarm bells suddenly ring but, as always, I’m trying to be positive.
Lymphoma, I have bloody non hodgkin lymphoma aka CANCER. We’ve literally just been told my mum has 18 months to live and now I have cancer as well?! Honestly I don’t think our wee minds were functioning in that room when we were told, all I could focus on was dying, how fucked up is that. So here we are, Mother and Daughter going through cancer together. Just another thing to add to the downhill at 30 list…
So in the midst of my mum having her seizure and a brain operation, my poor wee gran wasn’t doing so well. She was a lovely old age of 93, but I don’t think that makes it any easier, I think there’s all types of grief and that it’s unique to the person who goes. When I was younger I used to sit in the backseat of a car and I remember I would wish on stars that my gran would never die, which of course is an impossible wish. She made it to her 93rd birthday and then died a few days later.
She was lucky enough to meet Dexter and to enjoy a full year with him, oh she adored him, and in his own baby way, Dex also adored her. Reflecting back, she was probably my most favourite person, as we grow older we may drift from the older generation, they start to get a bit frail and their mind goes a wee bit, we may no longer have sleepovers and hot chocolate at night, or trips to the sweet shop for strawberry bon bons or walks to the library but I think they teach us a lot about the people we want to become and the traditions we want in our life. I used to visit my grans house every weekend, it was the focal point of our family, I had every single Christmas there, sometimes even just me and her. My gran and grandpa loved Christmas, they hosted every year when he was alive, I think even sometimes we all had to bring a microwave so we could heat up all our dinners so we could get served together. It really was magical, I loved that house and I loved being with them. Looking back most of my favourite memories are in that house and with them. I really did love them and even when she was old and she just wanted to be with my grandpa in heaven, she tried her best to keep going.
So this was just a small wee chapter in my slope of turning 30. A major chapter, that probably got overshadowed and that I didn’t get the chance to focus on, reflect and heal from. A beautiful woman who I think about and miss everyday. Iris and Dave were my safe place and I’m so grateful to them and wished I had realised that and told them it more when they were alive.
It was just a normal October weekend, crisp and dry. I had dropped by my mums and we’d went down to the ‘wee park’ with Dexter, it was a nice wee day, Dex and my mum had lots of fun climbing and playing on the swings, slide and on his wee trike. Everything was as normal as it could be. We went home and then I’m sure his dad came up for a bit as I had to tell him to turn his car around and come back..
My gran was in hospital because she was a bit poorly, so my mum went down to her house and used the washing machine just to get a few loads done there. I got a call from my auntie (no one ever phones me, they know I hate it!) so I immediately thought something was wrong with my gran. However she said mum had collapsed and was lying on the grass unresponsive but still breathing and she said that when she fell she shouted my name. I went straight down, she was lying on the wet grass not speaking or opening her eyes. We managed to get some cardboard under her and a blanket, the ambulance was going to take ages but we were too scared to move her as we had no clue what was going on? I think we all thought it was maybe a stroke, I just sat on the grass holding her hand until we could work out what the hell we should do. It was so lucky that my auntie was even there, she had came to feed the cats, otherwise who knows how long my mum would have lain there for, alone.
After an hour or so, my mum actually came to, she was very shaky and couldn’t really stand up but by the time the ambulance arrived, she was up asking for a fag like nothing had even happened?! She actually walked in to the ambulance by herself and by that point the relief was so immense, she was obviously fine! Well that was a complete and utter understatement.. After some days in hospital with plenty of tests and scans and then sent back home after seeing a ‘shadow’ we found out that my mum had Glioblastoma and was going to have to go for brain surgery. At this point you don’t really believe or think about the worst case scenarios, you just kinda hope for the best? I mean, one minute she’s on a climbing frame with her grandson and then the next she’s going for brain surgery? Don’t think our wee minds are able to process things like that very well. So this was another thing to add to the ‘downhill at 30’ list.. and oh boy does it get worse.
I should probably start at the beginning like every good book or film does, but I’m just gonna skip to the good part (or in my case the peak before the trough) Don’t worry, this blog isn’t about nappies, breastfeeding and teething. It’s just to set the scene of how it all started..
We had been trying for a baby for a good wee while, we were married, in our new house and I couldn’t wait to be a mum. One day I was just walking Oscar, our dog, and after it I just felt weirdly tired and was like might as well test and see, just expecting it to be negative like all the rest! Low and behold, those two pink lines showed up, strong as ever! I was ecstatic, honestly buzzing and couldn’t wait for the journey to begin!
Being pregnant was probably the best I have ever felt, I loved growing him, I loved the appointments and scans, I loved telling everyone and having a baby shower and the excitement of getting everything ready! I had also recently gotten my dream job that I’d been trying so hard to get into for years (a mortuary assistant in case you are curious) and I couldn’t wait for maternity leave, all the coffee dates, walks in the country parks, baby classes etc (why are we first time mums so naive!) Anyway, the birth was horrific, after a lot of being in my head and panicking and screaming and just totally not in the right mindset at all after such an amazing pregnancy, Dexter was born by emergency c-section but was healthy and beautiful. We had to stay in hospital for a wee while, my milk wasn’t in yet so he was losing weight and not peeing etc and had really bad jaundice so had to go on light therapy. All in all, it wasn’t the best start!
Looking back now, for the first few months, I really do think I had a touch of post natal depression. I was in autopilot trying to keep this little baby safe. He cried a lot, cluster fed a lot, teething started super early and he couldn’t be put down like at all, healing from a c section, mastitis and all the other stuff that comes with a newborn! It was actually really hard, I was definitely struggling, I missed the freedom and I missed being me. You end up a totally different person after having a baby, it’s quite scary! This is probably why all the tension started, all I could do was make sure Dexter was ok, he was my first priority over anything, including me.
I turned 30 that year, had a baby and then within 9 months my Husband and I separated. We are on really good terms and still a family to this day. I had started back at work by this point so us, my mum and his parents were all a wee team to look after Dexter and our routine was working really well, which made trying to adapt to the struggles of single mum life a tad easier.
Little did I know that was all about to explode, the separation was just the tip of the iceberg on what I like to talk about as Downhill at 30..