The Final Point

I suppose this post was meant to be written about a month ago….but in all honesty I’ve been too busy living my life again and making up for lost time. As most of you all know, I got my final results from my PET scan to find out if I was in remission or not on Monday 3rd June. To be honest, when waiting in the waiting room for my name to be called I told my parents and sister that maybe they should go in without me. I had this overall sense of fear which is hard to describe to anyone as it’s like no other I have ever experienced, I didn’t want to find out the results just incase it was bad news. From my final chemo at the end of March to the beginning of June I’d been living in this bubble and I felt like I was just starting to get my life back and I didn’t want this to be ripped from underneath me once again. 

My name was finally called and my doctor was so calm. I know from previous that you can tell what’s coming the moment you see your doctors face; she was smiling. The moment she told me I was in remission and that I had been from around January when I had an emergency scan to check for a blood clot. I just couldn’t stop crying, for me it still hasn’t really sunk in even now. The last few months really do feel like a horrible nightmare, when you’re going through it you don’t really think about what is going on, until after. 

You might be wondering out of curiosity, what happens now? Well apart from all the holidays, copious amounts of alcohol and trying to get my body back in shape to how it was before this shit storm, I have to have a blood test every 3 months to make sure everything is still on track and that I’m still in remission, my next blood test is in September. I’m probably not going to write about it so lets just say, no news on here is good news…in fact this is probably the last post I’ll write again, don’t get me wrong I love writing them but why this is most likely the last is purely because I don’t think people are interested in my day to day life of what I get up to on a daily basis… 

I just wanted to say a huge thank you to you all for taking the time to read all my posts of me rattling on and moaning about what was happening, I like to think that you’ve all experienced this terrible journey with me. People ask me if I’m sad after everything that’s happened to me and don’t get me wrong I’m still sad I lost my hair, but I do count myself as lucky in a way. I’ve had a wake up call at a young age which I didn’t deserve but it has made me eternally grateful for the life I have, for my health (now) and for the people I have around me. I have realised that I am more than what I look like, I’ve learnt more about myself in the last few months then I have ever before. I’ve learnt that I’m strong, I’m a fighter and I don’t give up. It’s opened my eyes up to what I have and what life is really about, being healthy and happy, everything else is really quite insignificant. 

I hope this journey of mine has opened up your eyes too. 

Lots of love,

Grace xo 

Long Time No 'Speak'...

If you haven’t noticed by now that I’m not very hot on the blog updates then you clearly haven’t been reading carefully lol. Some of you may have remembered that March (the current month) is my FINAL CHEMO MONTH. As I am writing this, I am currently trying to recover from my penultimate chemo and I have my final session slowly creeping up on me in 8 days and 18 hours, not that I’m counting… I thought I would update you all on the past month and what happens next for me after next Thursday. 

Since my last post about convincing myself that I had a blood clot, I have tried to focus on spending my few good days that I have between chemos with my family and friends to try and distract my mind from the anxious and negative thoughts that come hand in hand with the drugs and unfortunately any diagnosis. Spending time with my family and my boyfriend’s family for me, helps me cope. It brings a sense of normality back into my life where not every conversation is about cancer and what is going on but instead we talk about other things and about the future. I’m treated like the same person I was pre-cancer. The same happens when my friends return from university, I treasure those moments and I love to hear about what they have been doing as it does bring that same sense of normality back into my life. I know this sounds ridiculous, but I actually can’t wait for the day when someone asks me how I am and I can happily say ‘yeah I’m good thank you’ - I cannot wait to be boring again!! :D 

This leads me to where I currently am, I had chemo 11 last Thursday and have spent the weekend and beginning of this week trying to recover. Each chemo really is getting harder and they do take longer to get over. Both the side effects on my body and mind create a glorious concoction in my body, which is fighting so hard and I’ve never been prouder of myself then I am right now. I’m not going to lie or sugar coat it, but It has been hard, really hard and I think only now is it just starting to sink in to my head and register what has actually happened to me over the past 6 months, to put it politely, it’s been a whirlwind. 

So, what next? Well after next Thursday, I’m left once again to go through the dreaded chemo hangover…one last time. I will then see my consultant a week later to arrange my final PET scan which will hopefully be about 6 weeks after my last chemo. I should then receive the results and hear the words I have dreamt about from the very first day I found out I was poorly in mid September about a week or two after the scan. After that I can then focus on officially starting to rebuild my life back up again and begin to put these past 6 months all behind me. 

The next time I write a post, I’m hoping it will be to tell you all that I got my results and received my all clear and that I will be in remission…and who knows I may even have some hair by then too!?! 

Please keep everything crossed for me and keep me in your prayers, 

All my love, 

Grace xo 

Clot, clot, clot...or not.

I have been quiet once again…but I thought I would write a post to let you all know how I have been recently. Following on from my last post, my chemo got postponed by a few days because of my hospital stay. But I have now just had chemo 9 out of 12 and I can officially say that I finish chemo at the end of next month!!! (how bloody exciting) I’m going to be totally honest though, this chemo has really knocked me for six. I feel exhausted constantly, the sickness seems to have got worse and my days consist of moving from my bed to the sofa and maybe to the fridge and back. (I’m not even joking) Now that I am so close to the end I almost feel like I am stuck on groundhog day, I literally do the same thing every single day, but it’s hard to do stuff and go places when your neutrophils are non-existent and you’re at risk of picking up absolutely anything. I know this sounds silly but because I’m so close to the end it’s made me not want to go anywhere so that I’m not at risk of picking anything up and so I can just crack on with the remaining chemos. 

As I briefly mentioned earlier, my side effects from each chemo are gradually getting harder to get over, not just physically but mentally too. It used to take me a good 2/3 days to get over the chemo but this time round it has taken me 5 days to finally start to feel a little bit more like myself. 

For me a big part of this journey has been the effects that chemo has had on my mind. The weekend before my birthday I ended up in a&e, I had convinced myself that there was something really wrong as I was struggling to breath properly. The nurses and doctors did tests and scans and everything came back as normal, this settled me over the weekend but then just last week I saw my consultant and said how I had this pain in my chest and was convinced I had a blood clot. She scheduled me in for an emergency CT scan for the following day and then we waited for the results for the next few days. I got the results back on Thursday and there was no blood clot. I was 90% sure I had one and this just shows how bloody powerful the mind can be! Before cancer, I had never really experienced any signs of anxiety. However now, anxiety and I are the best of friends, unfortunately. I’m hoping she leaves when this is all over…I fight with my anxiety almost everyday and to be quite honest with you all, I don’t actually have the slightest clue as to what I am feeling anxious about, but I really wouldn’t wish this on anyone. 

It’s hard to put into words how you truly feel going through this but I suppose I just really don’t feel like myself anymore. I look in the mirror and don’t recognise the person looking back at me. I’m trying to stay positive and strong but sometimes it’s difficult. 

People tell you not to wish your life away, but right now this isn’t my life…so I will keep on wishing until my heart is content. 

Only 5 weeks to go!! 

Love, Grace xo 

A Small Setback...

Firstly, I’m sorry I have been so recently M.I.A I needed a bit of a break after chemo 6 as I found this one so mentally challenging. Chemo 6 was meant to be a positive chemo due to it being halfway but a number of things added up to it being so difficult…1) everything was go-go around Christmas that I actually felt normal, but I was then suddenly transported back into the land of cancer and dealing with chemotherapy the day after boxing day which, was hard. 2) my boyfriend and his family went away for new year, skiing. A trip that I had planned to go on before finding out I was poorly. This was really hard for me to sit back and watch them all go, I didn’t want to miss out but I unfortunately had no choice. To be honest, this is one of the only times where I have been angry with my current situation, cancer was holding me back from living my life, creating memories and being normal and this angered me like nothing else, I felt like cancer was in control. My plan for this blog post was to do a generic update about what’s been going on and to keep you all in the loop of my journey. But this post will now be slightly more interesting (luckily for you) after another weekend away in my local NHS Hotel, as I like to call it. 

After monitoring my temperature all Thursday evening, in the early hours of Friday morning my temperature reached its highest and it was another trip to A&E. This time round the staff seemed to be a bit more understanding of my situation and I felt like they took it more seriously then they did in my previous experience. There was no waiting in the waiting room with everyone and I was taken straight to a cubicle. I was given my antibiotics for suspected neutropenia and for an infection somewhere in my body. I then had blood taken for a blood test so they could see what was going on. 3 hours later and the nurse in charge came to speak to us and said how she was going to move me to my own separate room as the results were back from my blood test and I was severely neutropenic, in my case I had 0.0 neutrophils…meaning I had no immune system whatsoever and I could literally pick up anything. To put it into perspective for you, the average range of neutrophils for a healthy person can be anywhere between 1.5 to 8.0. The side room was okay and we finally managed to get a few hours sleep as the symphony of A&E could now only be heard in the distance. I was told that as soon as a room became available on my ward, Laurel 3 I would be taken there.

16 hours later…

It was now 6pm on Friday night and I was finally being taken to my ward where I would have my own room with a private toilet and essentially be in isolation for a few days to be honest though I didn’t mind. The rooms are quite nice and it’s better then being on a ward with everyone. Over the next few days my neutrophils started to come back up and I began to feel like myself again and I was finally able to come home on oral antibiotics on Monday afternoon. It’s hard to stay positive sometimes when you’re in hospital and have to deal with yet another setback, but I remind myself of how far I’ve come and how I don’t have too far to go. After chemo on Thursday I will only have 4 more to go and to be honest, I cannot bloody wait!

But, in other news I saw my consultant in December and received the results of my halfway scan. The tumours in my neck and chest have completely gone!!! This means that although they have gone, I still have to carry on with chemotherapy just to make sure it has completely gone (good riddance I say!!). To say I am relieved would be an understatement, but I know I have to keep fighting and I can’t fully relax and celebrate until I get my all clear in March/April. 

However, I did receive some devastating news a few weeks ago. My consultant but also my friend, the best man in the world has been signed off work for 6 months with ill health, which means he will no longer be able to accompany me on what’s left of this bloody awful journey. By the time he comes back to work I should hopefully be done with cancer and treatment and living my life. This has been really hard for me to get my head around as I rely on my consultant for so much, the constant support he has given me is truly overwhelming and I can’t thank him enough. I’m struggling to see how I am going to do it without him, but as he has said to me I must stay strong and that ‘this is all gods testing time.’ Things in life get sent to test us and to show us how strong we really are and I will not let him down. 

I just wanted to finish this post by saying thank you to my amazing family and boyfriend, I really wouldn’t be able to do this without them by my side every step of the way.

8 more bloody weeks of hell until freedom! 

Love Grace xo 

My carer (mum) and I

Hair Today, Gone Tomorrow.

This post is quite delayed and I can only apologise…the festivities were getting the better of me and to be honest, it was nice to get away from everything and spend time with the people who are important to me as this halfway chemo has been really tough for me. This post is going to be quite hard for me to write about and open up-to to everyone as it has been the worst part of my journey so far. But I feel it’s important to not hide what cancer really is like. 

It sounds so shallow but when I first met my haematologist one of the first questions I asked was ‘will I lose my hair?’ I had cancer and all I cared about was my hair. I didn’t want to be associated with the disease and I felt that losing my hair really was a big giveaway, everyone (even strangers now) would know I was poorly and I didn’t want people to stare at me. 

I was told that I would, and that most people’s hair started to fall out 10 days after their first chemo. This didn’t happen for me, I didn’t start to lose hair until 9 days after my second chemo, it was only little bits but more than usual, it was gradual for me and just strands came out when I brushed it but nothing I couldn’t cope with. I would say for me, the day I was let out of hospital after being admitted for the second time in mid November was the day I officially started to lose my hair. 

I remember I had just had a shower at hospital (not a nice experience, would not recommend) and started to brush my hair. When it starts, it falls out fast. Clumps of hair were coming out in my brush and I remember telling myself that it’s fine and I knew this was going to happen. I’m not going to lie, it’s actually quite painful when your hair does start to fall out. My scalp was achy and it hurt so much, the only way I can explain it for me,  is like being pricked with tiny needles on your head all the time. I remember coming out of the bathroom and my mum asking me if I was okay, I just handed her my hairbrush and burst out crying…I think I cried for 2 days straight after this. Partly why I cried all the time is that you’re constantly covered in hair so I would be having a really good day and then when I would look down at my clothes , I would be covered in strands of hair and it gets to the point where it’s just so annoying…a constant reminder of what’s going on. 

I then decided to get a fringe cut to hide my new bald patch at the front of my head, this really helped me. It covered the area which was thinning the most and gave me a bit longer with my hair. I was prepared to try anything so that I could keep it for as long as possible and hold up my disguise of not being known as a cancer patient. The fringe lasted quite well until I had to have my hair re-cut at the start of December. My mum being a hairdresser was a blessing in disguise really, she pulled more hair from the back to cover the growing bald patch at the front of my head, but because this didn’t look great on its own, it was hats and headscarves from here on. For anyone going through this or something similar, I really would recommend getting a fringe as when you have a headscarf on and leave the fringe out, no one would know! (and if they ask - “it’s fashion darlingg.”) 

By having the fringe recut this gave me an extra two weeks with hair, which I know doesn’t seem a lot but I’ll take what I can! On the 18th December I decided to 'brave the shave.’ My hair had reached the point where I actually looked like an old woman (more like witch), I would say I only had about 20% of my hair left, if that. It looked ridiculous to be honest, all I could wear was beanies and have these tiny bits of hair poking out just so people thought I had hair, and I suddenly thought to myself, why am I trying to hide this? I promised myself I wouldn’t hide the toughest battle I was fighting from everyone and here I was clinging onto my hair so people thought I was okay. Well the truth is, I’m not okay and most people know that, everyone knows I’m going to lose my hair so what is the point in hiding it? Yes I am fighting cancer and yes I am bald, but I am winning my fight. 

When I actually shaved my head, it wasn’t a sad moment at all and I didn’t want it to be. I had no attachment to my hair anymore as it no longer looked like me and wasn’t the hair I missed. I miss my long, healthy hair not the fluffy stuff I had left. I laughed throughout getting it shaved off and my family and I made jokes and it really was a special moment and very liberating to be honest. For an event everyone was dreading, it’s probably one of my best memories from this whole journey so far. I don’t want to wear my wig and for now I wont be, I’ll be sticking to my headscarfs and beanies, what’s the point when everyone knows it’s a wig? My opinion on this might change but for now I’m happy embracing my bronzed (thank you fake tan) little egg head. 

All that’s left to say is thank you for taking the time to read this very long post (sorry) and I hope you all have a very happy (and healthy!!) new year!! 

(I’ll attach some photos below of my hair…)

Love Grace xo 

when I got my fringe cut 

experimenting with headscarves (harder than it looks) 

bad hair day (lol) = beanie

bald patches appeared

when it started to get hard...

experimenting with more headscarves

I'd had enough by this point.

Finally baldilocks :) 

The Thrills of ABVD Chemotherapy

So it seems I’ve finally been given the chance to discuss my experience with chemotherapy…exciting I know. It’s going to be difficult to make this post seem interesting but however, to someone about to embark on their own cancer journey hopefully this will be helpful and an insight into what’s to come. For most I hope this is an insight into a medical world you’ll never have to enter! 

I’m just about to start cycle 3 of 6, I have to have 6 cycles over the six months. Each cycle is a month made up of 2 sessions, with a 2 week gap between each one…if that makes sense, I struggled to get my head round it too in the beginning! 

When I had my first chemo I had little knowledge on what to expect, which in hindsight was probably a good thing. Most people tend to get their side effects 3-5 days after chemo but for me, they hit as soon as I get home. With the first one I was sick as soon as I got home (the one thing I didn’t want to happen…at least I got it out the way) I also had tummy ache and felt generally unwell. I didn’t want my dinner (VERY unlike me) and all I wanted to do was lie in bed and watch telly with the fan on with a cold flannel over my head. Days 2 + 3 aren’t great either (I’m not really selling this to anyone am I…), I spent most of my days lay on the sofa battling the ongoing nausea and tummy ache and managing to stomach plain buttery bagels, anything else I wasn’t interested in. By day 4 I was starting to feel like myself again however, this is when my mouth started to hurt. My tongue felt cut and achy and ulcers make it hard to eat properly but they give you ‘magic’ mouthwash with antiseptic in and that does help a lot. All I can recommend is keep brushing your teeth otherwise you end up with an infection which no one wants!! 

It’s strange because with each chemo I’ve had different side effects, I always get the nausea and I always get a tummy ache but on my 3rd session I barely got any side effects at all which was very peculiar but I think this was due to the amount of water I drank whilst having chemo. That is my number 1 top tip - drink loads! It really does help I promise. With my last chemo, I did exactly the same as the one before and drank loads, but I had side effects this time. I suffered with really bad nausea again and one that I hadn’t experienced before which was the metallic taste in my mouth. Everything tastes disgusting and bland expect for strong flavoured food like curry, this does seem to do the trick and I’m able to taste this one. I really struggled with the taste of water so another tip for people is try flavoured fizzy water, its soothing on the tongue and tastes so much better (well it did for me.) 

The worst part about chemotherapy is its accumulative, so each chemo is going to get harder and harder. At the moment it takes me a week to feel like myself again, but I know this recovery time gets longer with each one..something that I’m really not looking forward to. 

Life update - 

So I’ve managed to stay out of hospital for a few weeks which Im so grateful for!! I had my port fitted two weeks ago which was again, an experience but no where near as bad as having a Picc line fitted. Tomorrow I’ve got chemo again and start my 3rd cycle. On the 27th December I’ll be half way, which to be honest is all I’m focusing on at the moment. Once I’m half way, it really is just a countdown then and counting down seems a lot easier then counting up! My hair is hanging on by a thread…literally lol. Honestly I look like the nutty professor from back to the future, it’s so bad! The crying seems to have stopped about my hair (depending on the day) and I’ve decided to just take the piss out of it now because what else can I do? Scarves have become my new best friend and don’t look that bad so for now that’s what I’m going to stick with and I do quite like them, don’t get me wrong I miss my long hair so so much but I know one day I will have my long hair again, this bit right now is just temporary. 

For my next post I’m going to write all about hair loss and what I have done to cope with this if anyone is interested. Hope everyone has a good week! 

Grace xo 

PICCs, Ports and Problems

Well, once again this post was meant to be about my first cycle with ABVD chemotherapy, but however cancer decided I needed another long weekend away in hospital…great. 

On Saturday morning I had to go into hospital, after I passed out on my parents bathroom floor in the early hours of that morning. I was okay and felt completely normal but my doctor wanted to check me over just to be on the safe side. I had a CT scan and some blood tests taken, my doctor then told me he wanted to keep me in overnight for observation. They were worried I had a blood clot that had formed around my PICC line which had now become dislodged and was floating around my body from the previous day when the doctor pulled 9cm of my line out, as it was touching my heart. They think this is what may have caused me to black out. To say I was annoyed to be back in hospital would be an understatement. I’d managed 5 days before I was back and all I wanted was a normal weekend. 

Sunday came and my doctor told me he wanted to do a scan of my heart, he wanted to make sure that the blood clot hadn’t gone into my heart…bloody fantastic (no pun intended!) The scan really was quite amazing, watching your heart pump away on the screen was so strange but fascinating. The results came back and everything was fine, thank god. I was put on blood thinners just to be on the safe side and had to stay in another night for observation. By this point I didn’t really mind, I was on a ward with three other ladies who have to be some of the nicest people I’ve met. Pauline, Christine and Margaret made it their mission to look after me whilst in hospital when my parents weren’t there and they definitely did and to top it off my parents promised me a MacDonalds for my tea :) 

My doctor came to see me in the morning and told me he wanted to take my PICC line out. My picc has given me nothing but trouble since having it fitted. The line had to be pulled out twice as it was touching my heart, something that shouldn’t happen, resulting in heart palpations for me and it also can be very damaging for my heart too. He explained how he wanted me to have a port fitted instead of the line the following week as this would be safer for me with a smaller risk of infection and blood clots. I got to go home Monday night and to say I was pleased would be an understatement. Spending two weekends in a row in hospital was enough for me. What they don’t tell you when you’re diagnosed with cancer, is everything else that comes with it. The infections, the risks, the hospital stays and in my case the blackouts. The chemo itself hasn’t been too bad to me so far but I have been told it does get worse. 

life/hair Update - 

Apart from hospital, life has been okay. The biggest challenge for me so far has been losing my hair. My hair has been falling out gradually for a couple of weeks but on Monday it was awful. I had a shower and started to brush my hair and it started to come out in clumps. For the majority of Monday and Tuesday I just cried, as if fighting cancer alone wasn’t enough, it also wanted to take away one of the things I treasured the most and probably what any 19 year old girl treasures. But I am determined to be positive, I know that the chemo is working because of the hair loss and I know that after all this, it will grow back. It might take a long time but it will come back. One of the hardest parts so far is looking in the mirror and not recognising yourself anymore, but this has taught me that looks aren’t everything. My personality is still the same and I still have my wicked sense of humour so it’s not all bad… 

Hopefully my next blog post will finally be about my experience with chemotherapy and not another post about hospital! (lots of emphasis on hopefully!!) 

Grace xo