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 

My Diagnosis...

For my first blog post, I thought I may as well tell you all what’s been happening in my life for the past two months. 

At the beginning of August, I discovered a lump in my neck whilst at a festival with one of my friends. I immediately brushed it off thinking it was probably just a swollen gland and that I was coming down with something…oh how I was wrong. I briefly mentioned the lump to my parents towards the end of August because the lump still hadn’t gone away, much to my annoyance. I decided to go to the doctors. She told me how she thought it was an infected lymph node and that she would book me in for an ultrasound. This wasn’t for another month and a half and it did in some ways, give me some sort of relief…if she was worried she’d have booked the appointment sooner. 

September came and my parents had booked a weekend away for us all to get some last minute sun and to celebrate my dad’s 50th in Marbella, little did I know that the following week would be the worst of my life. Whilst away, I started to struggle to breath, it felt as if someone was sat on the one side of my chest, something just hit me and I knew I wasn’t well, it’s strange how your body tells you when you’re not okay. The day after I got back from Marbella, I went back to the doctors, this time to see a different doctor. She felt my lump and I told her how it felt bigger and looked bigger then when I originally found it. She also checked my lungs but said they sounded perfectly fine. She told me that as a precaution, I should go and get a chest x-ray at the hospital. So that afternoon, I went with my nan to the hospital, it took a matter of minutes to have it done. The radiographer then told me my doctor would receive my results in 7-10 days and I left the hospital to go to my nan’s for some lunch. 

The following day, I started to get ready for college. My mom rang me on her way to work, she explained that the doctors had rang her but that they wouldn’t speak to her, they wanted to speak to me. I rang them to be greeted by my doctor’s secretary. By the tone of her voice, I knew it wasn’t good. She explained how the doctor had my results from my chest x-ray - alarm bells already, the radiographer said 7-10 days…it had been a day. The secretary then went on to say the dreaded sentence ‘the doctor would like you to bring someone with you.’ What. I remember putting the phone down and just screaming, I rang my parents and they came home from work straight away. We went to the doctors surgery, and waited and waited to be seen by the doctor. we finally entered the doctors room, we sat down and she said “I’m really sorry, its not good news.” I actually don’t remember much else, I just remember wanting to leave, if I left then it wouldn’t actually be happening and I would be fine. The doctor kept saying “do you want to know what I think it might be?” All I could think was ‘uhmm no, you’ve just told me I’ve got cancer,  I don’t really want to know which one it is right now.’  She went on to tell us how she thought it was Lymphoma, I’d never even heard of this. Once I started to think again, my first thought was ‘how do I tell my family? How do I tell my boyfriend? And how am I meant to explain this to my friends?’ The rest of the day consisted of me being surrounded by my amazing family and boyfriend and coming to terms with what was going on…this day truly was the worst day of my life. 

Everything after this just happened so quickly. The day after finding out the news, I met my Haematologist, the best man ever. I walked in the room and the first thing he said was “you’re going to be fine” and I just remember sitting there with my mom crying. I felt like I was in a dream, a week before this I was fine, I’d just got back from a weekend away, had things to look forward to and now everything just had to stop and I remember thinking - ‘why me’. My doctor told me how I needed to have a biopsy and some blood tests done. I asked him what he thought I had, he said confidently “this is 100% Hodgkins Lymphoma, without the biopsy I can’t diagnose you, but it is lymphoma.” He then went on to talk about treatment, and how I will have to have chemotherapy  for 6 months and how I will lose my hair. For me, this has been the biggest thing, I don’t want to lose my hair, I’m just not going to look like me at all and everyone will know I’m not very well.

After all this, just a week after getting back from Marbella I was in hospital, having my biopsy done under general anaesthetic…an experience in itself. Two days later, I was getting my PICC line inserted (this was definitely the worst thing for me) and a week after that I had my PET scan to see if the cancer had spread anywhere else in my body. 

This brings me up to where I am currently. Last week I had a meeting with my Haematologist again, this was my official diagnosis - stage 2b Hodgkins Lymphoma and I’m due to start my chemo on the 16th October, by the time this blog comes out, I’ll have either completed my first chemo, or just about to. The reason I have decided to share my story, is for numerous reasons…1) why should I hide the toughest battle I am going through from everyone I know. 2) I want to raise awareness about Hodgkin’s Lymphoma, for people to know the symptoms and how common it actually is for people my age and older to get. 3) When I was told I had cancer, I tried to find people on social media who also had the same as me. I read blogs they had made or watched youtube videos they created and to say this helped me would be an understatement. I suddenly didn’t feel so alone because other people had been through the same things I was going through. Not only did it help me but it also helped my family too, so if I can help just one other person through my blog who is going through something similar to me or knows someone who is going through the same, then why wouldn’t I do this. And finally 4) this blog is to also stop me from going stir crazy and to give me something to do with all my extra time I have suddenly accumulated…. 

Dear Cancer, I’m ready to kick your arse xo