Olivia Rose Smith

Tuesday, 20 March 2018

Chemotherapy cycle 1 (ABVD)

This is going to be difficult to make sound interesting and heartfelt, its going to be a very factual but hopefully useful (to people awaiting their own treatment) piece of writing about my first cycle of chemo. 

Before I began my chemotherapy I had extremely little knowledge on the drugs and the side effects so began surfing the internet looking for information and wow did that fill me with dread. I am not going to write a post filled with exactly what people want to hear, but a post to hopefully reassure you it really isn't as bad as you think, but not to let that take away from the severity of chemotherapy. I am going to let you know about the remedies I have discovered so far, I am still very much a novice at all this but I have had some very useful tips and tricks from another FAR wiser friend. (I will be scanning our WhatsApp chat whilst writing this to remind myself of all her amazing advice!!!)

I will start by saying that I had absolutely no idea that their were different types of chemo therapy for different types of cancer, let alone different doses for each individual patient. So the type of chemo therapy that I am having, is ABVD, which is specifically for Hodgkins Lymphoma (I think). This basically stands for the list of drugs in the medicine which I don’t remember the names of yet!! Drugs are still a complete foreign language to me and probably will remain that way! I am going to be having 6 cycles of chemotherapy (each cycle takes 4 weeks) whereby I will have chemo every 2 weeks, so 12 sessions of chemo over all which will last 6 months. 

My first chemo therapy was on the 20th of February, 8 days after my diagnosis! It all happened so quickly, but looking back this was good as it meant less time getting nervous about actually starting the treatment, and one step closer to recovery. On the day of having my chemo, I started my day no differently to how I normally would, with bacon and eggs! This chemo session was a little different to how it was normally going to be because I didn't have my PICC line in yet. However I am glad I now have the experience of having chemo therapy both through a PICC line and through a cannula. The cannula went in no trouble at all which was surprising for me since I have such rubbish veins. The first few drugs which went in was fine, other than feeling slightly cold up my arm. I had in my head that I was going to be throwing up all day and feeling terrible so I was pleasantly surprised to find out that anti sickness tablets do actually work and I didn’t even feel sick once. I had a slight headache, in fact I compared the feeling to a hangover, but wine had definitely made me feel way worse before! I don't know whether one of the reasons that I didn't feel sick was due to the fact I was wearing anti sickness bands which I put on in the car on the way there and took off the next morning. So I would definitely recommend buying these! (I will leave a link at the end). The drugs took around 7 hours to actually get into my body, this isn't normal, but because I was having my chemo through a cannula and I have very petite veins it took a lot longer to go in and also because one of the drugs can be slightly painful going into your body, but the pain was easily relieved for me by using a heat mat wrapped around my arm to dilate the vein. 

When I got home I still felt fine, I wasn't even able to get to sleep until about midnight that night, I think I was slightly buzzing from the feeling of relief! I had sausages, mash and beans for dinner which is ridiculous compared to how I assumed I would be feeling!!! I slept well that night and then felt well again the next day, I stayed home though as I was expecting side effects to begin but they never did. I remember feeling as though I wanted some side effects, because I couldn't believe I actually had cancer, and that I'd just have chemo therapy, I wanted evidence! 

I woke up in the middle of the night that night, and had all the evidence I needed, I was laughing at my previous self asking for this! I had a sore throat and felt hot and sick, but I have to say it was no worse than I’d felt before with the flu. I woke my mum up and she laid with me until I got back to sleep! The next day I felt the same, nausea and flu symptoms and I was unable to eat. At this point I was too scared to take paracetamol because I had heard it was bad to do so because it masks a temperature and therefore you wouldn't know if you had an infection or not. I kid you not I take paracetamol non stop now. So long as you check your temperature before taking it I don’t think its too dangerous? (buy a thermometer for at home)

I think that the worst side effect I had was all the aches and pains I felt around my body, my oncologist told me that this was because of my tumours breaking down in response to the chemotherapy so toxins were floating around my body and making me feel so unwell. This then made me feel that the aches and pains were reassuring in some ways because it was a way of me knowing that the chemo was working. For pain relief the best thing is definitely heat, hot baths, hot water bottles and I actually bought one of the heat pads they use at the hospital (link below) which has been an absolute life saver! One of the main aches and pains however was in my arm, because the chemo had travelled up my vein it was scorched and therefore so painful for around 9 days. The best thing to do was wrap my heat pad around it, without heat it was too painful! I also used an ibuprofen gel which seemed to help a little, as well as taking paracetamol. 

Another of the side effects I battled with the most was a sore mouth, there are so many things that I recommend doing to prevent and also help with this! Firstly, don't doubt how important mouth hygiene is!!! Brush your teeth with a soft/ children's tooth brush after your meals as often as you can, and also use an anti bacterial mouth wash every time (hindsight is a wonderful thing)! I ended up with sepsis because of a tooth infection, because I had a sore mouth I wasn't brushing properly but little did I know I was also neutropenic. There are also mouthwashes to help with the pain of your mouth, Difflam is amazing and doesn't taste too bad. You can use it every few hours.

By day 7 I had started feeling back to normal and the flu/ hangover like symptoms seemed to have cleared. I was able to eat normally (like a pig), I think that it is so important that if you actually feel like eating, which has been rare for me, to eat as much as you can and particularly as much fruit and veg as you can too! My taste buds were effected massively for the first week or so, and I only ate very bland foods like toast, crumpets, chips and eggs. I have also found that since starting chemo I don’t like to eat meat as much, I think that this is because of the negative connotations that go with it and I don’t like the idea that I am feeding my tumours…. But I still eat butter and cheese and eggs which is just as bad, but I suppose in my mind its not.

Although I had now started to feel well again, I ran out of energy so so quickly and this is when I realised that I am not actually able to do the things that I was able to do before. The most infuriating thing is not being able to stand for very long. On day 9 I attempted to go to work in my aunties boutique, which I LOVED, as I thought that I felt well enough to do so and I was heartbroken to realise that I only lasted an hour or so until I was too tired and needed to go home. This was probably my hardest day so far, because before this I had thought that I could carry on my life as it was before if I did feel well enough. Sitting on the side lines and watching everything carry on without you is the shittest part, and I am in tears as I write this, but I know that this is the thing which will change me forever. Because I didn't realise that I wasn't a sitting on the side lines girl.

I am now on day 9 after my second chemo, so day 23 of my 28 day cycle and after a long battle with my head last week I am feeling much happier. I have found it hard to focus on the things which  are making me happy such as this blog, my documentary and seeing friends. But after a visit from my friend where we laughed and laughed at trying to tie turbans on my head (because my hair is literally down to a wisp!!!!) I realised why I went into this battle with such a positive frame of mind, because there is absolutely no point in not laughing and no point in being angry with the world.

After my second session of chemo I didn't feel half as bad as I did the first time round. The actual chemotherapy took half as long with my PICC line, and I haven't had any aches and pains. This must be because the tumour has shrunk and there isn't as many toxins in my body. For sure I have felt nausea and flu symptoms but nothing in comparison. (and also breathlessness is another one to add to the list). So I know everyones body reacts differently, but my guess is the first is the worst and its only up from here.



Heat Pad - https://www.johnlewis.com/dreamland-16052-intelliheat-multi-purpose-heat-pad/p231782189

Sunday, 11 March 2018

Bump in the road

This next blog post was going to be all about my first cycle of treatment, however I haven’t managed to quite get there yet. As everybody kept saying to me there are bound to be bumps in the road, because of the harsh nature of chemo therapy, I just didn't imagine it would happen so soon… (yet more naivety from me!!)

On Monday I went to clinic to have my bloods done and to see my oncologist to discuss everything so far. I felt fine that morning other than some sores in my mouth, which is a really common side effect of chemo. My oncologist didn't seem worried at all so he didn't prescribe me anything. But I wasn't home long and I was faced with terrible pains on my face and in my throat, as well as flu symptoms and a temperature! I phoned up my nurse explained my symptoms and she wrote me a prescription which I sent my dad to collect. The nurse said that if anything got worse to phone the emergency line and get advice, and a few hours later I did just that. The nurse who answered the phone told me to come in straight away because I needed to be admitted. I felt like saying only joking!!! I’m fine really!!! and hanging up the phone!!! Staying over in hospital was something id never done and was something I knew would happen but was definitely one of my fears. But obviously I took her advice and went straight in. 

I am sat writing this on day 4 and no sign of being let home, and on top of this my chemo was cancelled as I wasn't well enough to take it!!! Turns out that I have a really low count of neutrophils in my blood (white blood cells) which means that I really easily pick up infections, and thats exactly what I have done. I took a sneaky look at my medical notes and it said I have Neutropenic Sepsis. Okay, now I'm ready to take it seriously. (After my google search said life threatening!!!) Where as before I had been so frustrated that I had been admitted for ulcers! Although mum did remind me, Liv you do have cancer. Oh yeah… Easily forgotten?!

Every bump in the road is going to make you appreciate something new - and on this occasion it was the amazing ward I have access too for teenagers and young adults, which is funded by Teenage Cancer Trust.(https://www.teenagecancertrust.org/get-help/how-we-can-help/our-units/southampton-general-hospital) The ward has all private rooms with an ensuite, a kitchen with everything you need, social room with loads of films, xbox, pool table, instruments to start your own band ?? and OBVS a craft table!!! All jokes aside, most importantly, the ward is full of people your own age so you don’t feel out of place. Some people don't have access to these wards at their hospital and travel for hours to get to one, I feel so lucky to have this on my door step.

BUT I have not been lucky enough to get a bed on the TYA ward (teenage and young adult) and my experience in hospital has made me appreciate this facility so much, mainly because before hand I had nothing to compare these facilities too. Unfortunately the unit was full so I had to stay on a regular ward with mainly elder women… Although this was quite entertaining at times I have felt so out of place age wise.  The mood on the ward is so gloomy and it is a negative place to be trying to recover with several of the women being told in front of me that they only had weeks to live. I felt I wanted to do everything I could to try and help the lovely ladies but I was unable to.  Little did I know, that just by being there and being my positive self I was immensely helping these ladies, I was told that my laugh was the best medicine that they could receive! As well as one of the other ladies saying to me as she left that I should never let anything get in the way of my giggle. This was a huge lesson to me, that my positivity is in fact rare among cancer fighters, and reminded me that I need to use it to help people as much as I possibly can. 

So, all things considered my first experience of having to stay in the hospital has been much better than expected. Particularly the morphine and riding my drip like a skateboard up and down hospital corridors!!! But most importantly, it has been a reminder that I must stay positive. Oh and hospitals really do make you feel better, and quickly too. Yet another one of my fears faced.

Sunday, 4 March 2018

What to say when somebody is diagnosed with cancer...

In the first stages of my diagnosis I found it way too easy to drop into conversations that I was undergoing tests to ‘rule out’ cancer. It all seemed so absurd and out of the question anyway that I hadn't even contemplated I would end up having to deliver the news I did to all my friends and family. It was therefore my own fault that I ended up with almost everybody bombarding me with messages asking “when do you get the results?”. I told almost all my friends over WhatsApp and thank god for that because I would not have been able to do that face to face (I do not do crying).

This was the point where I realised why people are secretive about things like this. It is obviously so reassuring to know I have such a huge support network, but I began to feel like an alien. It is not until something of this nature happens to you that you learn the right way to act towards a person going through it. This is nobodies fault, I was that person two days ago. But dramatic messages of heart break from upset friends only act as reminders of whats going on. People want to be there for you, and that is so so kind, but to be so upset that I actually end up consoling them over the situation is frustrating and you leave the conversation feeling down yourself. Of course you will be saddened to hear the news, but ultimately I don't benefit from hearing of your sadness. 

Uplifting and positive messages are so important and these are the people you end up running to. Highlight the positives in the situation, for example, age is on my side, or, you will come out of this a better, stronger person. Reminders that I am going to be fine, that I will beat this, that I will appreciate life so much more after all this go a lot further than messages likely to drag me down and remind me of the reality of how unfair this illness really is. Obviously it is not helpful for me to think like that, so I must look past it and focus on the positives.

Gifts are lovely, I am always grateful to receive flowers and cards. But when they arrive in the post this can be so isolating, it can make you feel as though people are trying to avoid you or are too scared to see you or they don't know how to talk about it.

This next point is so important to me, and is one of the main reasons I have decided to start this blog. It is hard to take advice from people who don't understand what you are going through, as in, from non cancer fighters. So if you do understand and you are going through the same yourself or have done in the past, it is so important to reach out to others to give them advice and to send them supportive messages. When people fully understand your struggle, that is when you know what they are saying is completely sincere and honest.

Lastly, this is by far the most irritating, is healthy people, who don't have cancer, suggesting alternative treatments to chemo. As if we are going to risk our lives and think oh yeah do you know what you're right I shouldn't have chemo and decide to travel to the states for CBD treatment or something similar. We really have no option but to listen to our doctors advice. There is nothing worse than people suggesting that doctors are wrong and that the NHS is a business thriving off us being unwell and that we shouldn't listen to our doctors. So, my advice is block it all out, and listen to your doctor because everything else is going to seriously mess with your head.

One of the best things is when your friends act exactly as they did before you knew. In other words, the only thing that is going to make you feel better is forgetting, you need to return to normality and for people to act as usual around you, because it is so important not to let this nasty disease take anything else away from you.

1. Don't unload your sadness onto your friend with cancer - we don't benefit from hearing of your heartbreak.
2. Uplifting and positive messages are so important - highlight all the positives.
3. Try not to avoid your friend, it becomes obvious that you don't know what to say.
4. If you don't know what to say - act as you normally would. This helps to return to normality!

Please remember that everybody is different and this is just my personal preference! But I am sure there are other people out there who agree with what I am saying, so I hope that this helps someone out there somewhere!

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