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 

My Long Weekend Away…in Hospital.

Well…what a weekend!! Instead of spending my weekend in Salcombe like planned, I visited the Worcester Royal Hospital instead. This weeks blog post was meant to be about my first cycle with ABVD chemotherapy, but it seems my body had other ideas. This post will probably be quite a long one but I had a rather busy weekend…

 On Thursday, I started to feel like I had tonsillitis on its way (great.) I made an appointment at my local GP surgery as some antibiotics would soon make me feel better. The doctor took my temperature - 37.4  and she didn’t believe I had an infection, I just had tonsillitis…. Before you start your chemo you are told all about the side effects and what to look out for when you think you have an infection, the biggest thing they tell you to look for is your temperature, anything over 37.5 and you must ring the helpline where they will probably tell you to go to hospital.

By the time I got home, I was feeling awful. I re-took my temperature…it was 38.3. This was not good, it looks like I didn’t just have tonsillitis after all, but an infection too. My mum rang the helpline and was told to wait half an hour, before retaking my temperature to see if it had gone down. We waited half an hour and mum took it again, the thermometer beeped…38.3, bloody brilliant. Mum rang back and told the lady, and I could hear her say “you need to bring her in to a&e ” at that moment I actually wanted to say ‘do you know what I’m feeling so much better..I think the thermometer might just be a bit temperamental’ but before I could I was out of bed, in the car and on my way to hospital. 

A&E..what a horrible place you are. I arrived at the hospital and it was awful. When I first found out I had cancer I got told that if I ever did get an infection, I would get rushed through a&e as any cancer patient becomes a priority due to the risk of picking up any other infections. I was given an antibiotic by the nurse and taken to a bed on the a&e ward with everybody else (something that again, as previously stated is not great for somebody that is struggling to fight infections.) I was waiting to see a doctor who informed me I would be staying over and that they were waiting for a bed to become available in the haematology ward…the one thing I was scared about was staying over and something I wanted to avoid at all costs, looks like that won’t be happening! 

I was finally taken to the haematology ward after spending most of the night awake listening to the soundtrack of a&e (I don’t recommend it.) I was given my own room to which I then discovered was because I was neutropenic, so I essentially was in isolation. Neutropenia is when someone has an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important for fighting off infections. A healthy person has anywhere between 2,000 - 7,000 neutrophils…I had 0.2. I was then told by the doctor I would be spending the weekend in hospital until my neutrophils were up…just what I wanted to hear. The next few days consisted of antibiotics, injections and hospital food (another thing I don’t recommend.) By Sunday I was ready to come home, I’d had enough and I was feeling so much better, just one more sleep until they would hopefully let me go home. 

Monday came and I knew all I was waiting for was to see my main man, my consultant. He eventually saw me in the afternoon and told me it was good news, I would be going home that day and they didn’t want to push my chemo back either as I was due to have this the following day. This was music to my ears, it sounds funny because anyone would think the doctors pushing my chemo back would be good and I could relax but really, this would mean it would be one step further away from me reaching my remission date, something I definitely did not want to push back! 

So what have I taken away from my long weekend in hospital…well, I’m no longer scared of hospitals or staying over in them..tick that one off the list! I also learnt that hospitals aren’t that bad, they make you better quickly and the NHS staff really are one in a million. Everyone who I met on the haematology ward over the weekend, I owe the biggest thank you to you all, for not only making me better, but for caring for me and for even being there for me when it all got a bit too much. I also owe a big thank you to my parents for never leaving my side, I couldn’t be as positive and strong as I am being if it wasn’t for them, so thank you.

Lots of Love…Grace xo 

The Nitty Gritty of Hodgkin Lymphoma

So for my next blog post, I firstly just want to thank everybody for their support and love, it truly has been overwhelming and very heart-warming for both me and my family and we all do truly appreciate it. I thought I’d give you all a bit more information into Hodgkins Lymphoma as I want to raise this awareness and inform people about it and of the symptoms connected to HL and to also give you a little update as to how I am and what I've been up to!

What is Hodgkin Lymphoma? 

HL is a cancer of the lymphatic system. Around 1,700 people are diagnosed with Hodgkin lymphoma in the UK each year. It can affect people at any age. However, it is more common in people who are 20 to 34 years old or over 70 years old’ - Macmillan 

How Lymphoma is treated - 

The main treatments used for HL is chemotherapy and radiotherapy. Depending on the stage and type of cancer you have, your age and general health, and which body parts are affected depends on the treatment you have, it could be one of these or both. I am having 6 months of chemotherapy as I have stage 2..

Signs and symptoms -

For me, my biggest symptom was finding the lump in my neck (I’ll put a pic below.)  However, on reflection I did have other symptoms as well as this. I had really bad night sweats, but I put this down to the long hot summer we have just had..I also did lose a bit of weight but not to the extent where I was worried. A pain from alcohol, but I didn’t have this and this is quite rare. The one symptom for me which really stands out for me, is tiredness. I was constantly tired. I would have a full 10 hours sleep and still be struggling to keep my eyes open by the evening, and a five hour shift at my local pub would knock me for six…warning signs, I know. The final symptom for me which made me do something about what was going on, was the feeling of breathlessness. The feeling of having someone sat on my chest and having to lie a certain way in bed just so I could breath properly was the final nail in the coffin for me. In hindsight, if I had known about Lymphoma and the symptoms of it, I probably would have caught it a lot sooner then I originally did and I’m hoping that by writing this, someone else could be reading this thinking “well, I’ve got that…and that” and will go to the doctors. I can’t stress enough how important it is to get any lumps and bumps checked, or even if you just feel unwell, listen to your body because I did and look where I am now…lol. However, just to confuse you a bit more, some people have Lymphoma and don’t have any symptoms, but this is found through tests for other conditions. 

Life update - 

Sooo, last Tuesday I had my second session of chemo (10 more to go!!) and the nurse told me how my white blood cells were quite low so I have to have injections so they reproduce as I currently have an extremely low immune system..but other than that, chemo 2 went okay. The only way I can describe my side effects is like one big fat hangover that lasts for about a week, but with added aches, pains, tummy ache, nausea and a really sore mouth. I should start to feel better this week but the aches and pains stick around and so does the extreme tiredness, for example, going out for lunch really does take it out of you and leaves you rendered useless! Apart from that, I have been okay, my hair has started to come out more and to be honest, it's really not great, it has made me realise that I am actually poorly. It's quite annoying really, there is hair on everything and it gets everywhere..sorry mum!! 

I know this post is a lot of information and could seem boring for people to read, but it’s an important topic to me and could hopefully save someone’s life. 

Thank you for reading and lots of love…Grace xo