Twenty Second Year

Olivia Rose Smith

Tuesday, 17 July 2018

You are in complete remission Olivia


Olivia, we’ll see you now… Sorry about the wait. Thats okay, I said, you should be, I thought. Hi Olivia, nice to meet you, said the consultant. For god sake, another new face, this means starting from the beginning everytime. So where exactly is the cancer? Can I examine you? Does this hurt? Checks neck, armpits, groin, ankles, stomach, listens to breathing, loud cough for me Olivia and so it goes on. So Olivia you must be planning your life after now? Mum asks when the final scan will be… (The scan we have pin pointed in our mind to determine whether I am cancer free or not.) Well it says here you are in complete remission Olivia. I nodded, as if I knew that all along. I didn’t. So I wouldn't be too worried about that scan as there is a very low chance anything will have changed.

 I hadn't heard those words before, the words I sit and dreamt of daily. My last scan was months ago. I had been in remission for months, I’m sure it had been discussed in meetings among consultants and nurses, the table between them knew, the computer knew, the machine that did my scan knew, god damnit my paper file of notes which sit in front of me every week knew, but clearly I missed the memo…

Life is weird like that. Often find that the big moments we anticipate tralaa to happen are actually quite soft and whispery. I got home and I put the ‘news’ on Instagram and I was inundated with likes, comments, messages, texts, phone calls and knocks on the door congratulating me of this amazing news. I felt like SUCH a phoney, not only was I not celebrating the good news but I had been in remission for months and had only just relieved everyone now. 

As much as it is a relief to know I am in remission, there are so many feelings which come along with it. And there are so many feelings that come with getting to the end of treatment. For me, those have come at the same time so the past few weeks have been overwhelming to say the least.

One of the main things is looking back at what you have been through and thinking WHAT THE Ffffff just happened... There isn't a minute, second or hour, when you are diagnosed, where you are left to come to terms with whats happened. It is mission get started with treatment, and once thats underway it is all about learning to cope with the side effects. So for me, I am only just starting to think about and talk about what has actually happened. Personally, this involves acceptance that there is a chance that the cancer could come back, and learning to live with that anxiety.

Being told that there is a slim chance it will ever come back by the doctors doesn't put this anxiety to bed for me, because there was also a slim chance this was actually cancer BUT they just wanted to eliminate it, and I wouldn't have cancer because I'm me, I'm normal, I'm healthy, I'm normal, I'm fit, I'm normal, I'm young, I'm normal, and this wouldn't happen to ME. But I did. And I'm now a nutter, by the way. But how can I trust my body now? Especially now that I'm not filling it with the anti cancer poison. It feels like I'm trusting the garden not to grow weeds again because I pulled them out once, and I sprayed a bit of extra weed killer.

What I am trying to say is, yes the treatment is over, and I feel like I have just woken up from a terrible, terrible nightmare. But the battle is far from won. I still have a hell of a lot of fighting left to do, I'm not done yet. I will win this fight thats going on in my head. Sorry, cancer. You're one short to your dinner party this evening.




SHARE:

Sunday, 24 June 2018

Things you notice when you slow down


Your words can nourish peoples ideas and help them become something amazing.
If we look for it, there is always fault in everything. But positivity is the best way to help somebody succeed. Encouragement can inspire people to dream, to believe in themselves and take action on their goals. Choose to be an encourager rather than a critic.

Someone else’s fortune is not your misfortune. 
Sometimes when another person is happy about something in their lives, feelings of envy can creep in and taint our behaviour (especially when you aren't having the best time). Try to choose feelings of happiness over envy because their win is not your loss. Celebrate their success because your time will come.

Taking things (even cancer) a bit less seriously can be kinder on everyone.
Sometimes life can feel heavy - we all have worries that occupy our minds and they could consume us if we let them. People want to laugh and feel normal and feel alive. Basically, just don't take life too seriously.

When we have too much to do, it leaves little room for us to think about other people.
There will always be things in life which require our immediate attention, deadlines, work, missed calls. But busyness is the death of kindness. We have little time for anything or anyone else. Focus on whats important rather than what appears to be urgent. Also, find freedom in saying ‘no’ to less important commitments.

We aren’t always sure of the best way to help, or we are afraid of saying or doing the wrong thing. But your actions can make a big difference.
When someone goes through a big life event - whether it be being diagnosed with a serious illness, or losing a loved one, think about ways you can help without being afraid of doing the wrong thing.  The gesture itself is less important than the love and thoughtfulness that comes with it.

Accepting help may seem weak, but there is so much strength in vulnerability.
Admit when you need help, try to believe that you are worthy of the kindness. Try not to feel too guilty or too proud to accept help, you will probably be making the other person feel good about helping you too.

Lets make a world where people are idolised for who they are - not for what they have, how pretty they are or what they do for a living.
I believe kindness is the best quality a person can have and I don't feel that it is valued enough. Lets admire people for their kind actions, and help make kindness the thing to feel most proud of.

SHARE:

Tuesday, 15 May 2018

A day in the life - on a chemo day

I couldn't wake up that morning because I had been awake half the night excited, excited that tomorrow I would be hitting the half way line. Its funny what I get excited over. In my head I have climbed the mountain now I’ve just got to come down the other side. Easy.

What can I get you to drink this morning? asked Dad, as he always does if I am awake before he leaves for work. Gin and tonic. I mumbled. Tea then? he replied. I pretty much downed my cup of tea as I always wake up so dehydrated in the mornings now, probably because of night sweats. Glorious things.

I hopped in the shower, not forgetting my Picc line cover, a huge plastic tent for my arm to stop the wound or the line getting wet. I can’t wait to wash my arm properly I thought, as I do every day. I washed my hair with baby shampoo, it seems to be falling out more and more at the moment so I thought I better use something a bit more sensitive. Is that even more sensitive? I doubt it. It makes my hair even more limp than it already is. I put on my full face of makeup, moisturiser, charlotte tilbury light glow foundation, highlighter, bronzer, eyebrows, mascara. None of this was to be seen on my face by the end of the day of course. And a light summer outfit, it was boiling outside, but freezing in the hospital, obviously. I always want to at least look the best there -  which is entirely pointless and probably really annoying for everyone else who turns up in their PJ’s. I feel like a fake turning up with my head of hair and face of makeup looking like the picture of health.

I had my blood tests done, and made my way up to clinic, where we meet with an oncologist and talk through all the retched side effects to have graced my body these last two weeks, and prescribe more hundreds of pills to take home for these new side effects, to add to our own mini pharmacy on the kitchen work top. Its always a long wait to see the oncologist, its always over subscribed so they run at least an hour late without fail. Don’t think we will bother with the last few months, joked mum. Its getting boring. 

I get called to get weighed before the oncologist see’s me. 61KG. Yesss I’ve lost 2KG I thought. But thats not praised by cancer nurses. Its like weight watchers in reverse. They want to see you putting weight on. Makes you stronger I suppose. But I’d just gone gluten free and cutting out the fresh french stick my Papa buys me everyday and wedge of butter has definitely been in my favour. I had actually managed to put on a stone in 2 weeks on previous occasions. Doh.

Olivia Smith? The nurse called. The oncologist will see you now. YESS! I threw my arms up and cheered. The waiting room full of 90 year olds always seem amused by me. 

I swear she hates you. Mum said as we left the oncologists room, but then we never have liked that oncologist. She always seems full of bad news and fills me with dread. Yes the side effects will be worse and worse from now on she assures me. Great thanks hun.

We now have to wait in the queue to make next times appointment now, a man in front of me in a wheelchair sneezes/coughs/gags and deposits a pile of snot, maybe flem, maybe sick, you cant be sure, onto the floor in front of him. We need tissues over here! Shouted his wife. I took a few steps back. Wow. I should probably feel bad, but I don’t. I just want out. I do not fit in to the cancer community, theres no doubt about that.

Mum and I always leave the hospital between clinic and chemo, at about 10:30, theres a couple of hours where you have to wait for the chemo to arrive. We usually go for brunch, or go to west quay. I then come back to hospital at 1, which is the time I am due to start chemo. 

Did you not have a blood test this morning asked the nurse? Yes. I replied. Well we have lost your blood it so we will have to do it again. Gahhh. Classic. Theres always something. We didn’t end up starting chemo until about 2:30 meaning I wasn't home until about 6. The day is always long and drags like hell watching the bags of poison drip into me and the colour quickly drains from my face. I sit there eating nuts, sweets, raspberries, mints anything to take my mind off the fact I swear I can taste the chemo. I’ve said before but I am so lucky that I get to be treated in a Teenage Cancer Trust unit. I get a nurses full attention all day, my own bed, usually surrounded by other teenagers going through the same thing. Instead of the 90 year olds in wheelchairs who swamp the other wards. 3 hours later, and a dressing change for my Pic line and I'm done.

Travelling from the hospital bed to my bed at home is always a chore. The car journey makes me feel sick, and we always leave at rush hour. I get home to everyone asking how did it go, how are you feeling, can I get you anything. Mum made me sausage and mash and I cleared the plate and then Harry went and got me chips from the chip shop. Yes I had mash and chips. Standard chemo food for me. Harry and Archie are such feeders. Always asking if you could have anything to eat in the world what would it be and they will go and get it. Doesn't help because I am literally a hoover. I cant stop eating. I wish I was the opposite, I wish I’d lost weight. I’d rather not be fat and bald. Not the best combo. The nurses always put on their sympathetic voice and ask how am I getting on with food, as if its supposed to be my worst enemy, mum and I just crack up. 

I feel like everything is ‘mum and I’ in this blog post. But actually I guess we are practically one person at the moment. She lives in my back pocket, or I live in hers as she drags me round delivering me to various appointments. Both having withdrawal symptoms whilst she works.


I had told the oncologist that last time I had chemo I had felt a lot more sick than in the past, I didn't even like water anymore. She told me she expected that this would be the case and prescribed me with more anti sickness medication, just to take at night because they would knock me out. I took one, a tiny tablet, half the size of a tic tac at 9 and by 9:20 I was fast asleep. It was bloody lovely to have a proper night sleep. They worked a treat. Unfortunately I was told not to put them eBay, sorry guys.
SHARE:

Tuesday, 1 May 2018

How I stay resilient



Staying resilient isn't about not feeling the things you feel, or suppressing negative thoughts, nor is it about not being honest when things are hard. Letting go of your expectations to be ok is ok, it is scary to go there… Confronting fears, being afraid you wont mend after you have broken. But “ruin is the road to transformation”.

It is also about working with what you've got, finding the strength in yourself to be happy and thankful for those things, rather than feeling angry at the shit you have been dealt.

Your resilience level is so much about perspective, you may not feel resilient right now, yet to others you appear to be thriving during a challenge. It may take time and distance from that challenge for you to begin to acknowledge how resilient you really were.

I have realised that instead of portraying myself as totally resilient, it may be more comforting to others to show what is is really like in the depths. So that you understand its not just you who feels like this… There is strength in both numbers and honesty.

One persons coping mechanism will be very different to the next. Personally, I find comfort in using my experiences to help and even inspire others. But its about what works for you and not according to anybodies expectations - your strategies may be quiet and not apparent to others.

Yes I am 22 and I have cancer. Yes I feel like cancer has stolen a year of my life. But, Hodgkins is curable, I am being cured, my recent scans show no remaining tumours after only 2 cycles of ABVD. (I still have to go through the full 6 months of chemo to make sure none of the buggers ever come back.) But I believe everything happens for a reason. That reason being I will grab life with both hands after all this bollocks. I believe my future would have been entirely different had I not been faced with this at such a young age. I used to be so comfortably numb, but now I feel everything with such passion. And for those reasons, cancer, you can have my 22nd year.

SHARE:

Thursday, 19 April 2018

KEEPING UP THE CANCER DISGUISE (BEAUTY)


The last thing I wanted to do was turn my blog into something vain and centred around looks but I get so many comments and questions from people on how I still look so well so I thought I’d write a post about all the products I am using when I actually do feel well enough to leave the house!

I have been so conscious of not looking like a cancer patient from the get go, so I’ve done my research on the best products to use and these with a combination of products I’ve used for years have successfully created my cancer disguise - business as usual!!

The first thing I have to say is so important to keep you looking like you haven’t just been pumped full of poison is fake tan!!! There are two fake tans I have been using at the moment which I totally recommend. Firstly is the Clarins liquid bronze self tanning for face, and secondly the St Tropez everyday body lotion (I use medium/ dark). Chemo makes your skin so dry so I have found that mousse fake tans which I used to swear by just go patchy very quickly and that drives me mad. Its crazy how much better a tan can make you feel, I am very rarely without any tan on, its my armour.

Skincare is so important always but especially when you are sick. I have absolutely no science backing this up, but actually having a skin care routine does make me feel better about myself, I guess because it feels like I am looking after my body and I have a tiny bit of control over something? Its also something to do, I am often so bored at home so to add in a bit of a pamper session feels like such a treat. Anyway, I love to use The White Company Super Balm gentle daily cleanser, it takes off all your makeup so easily and leaves your face looking so glowy. This is the only cleanser I have actually ever liked. It is made by the Abnormal Beauty Company and it apparently has no nasties in it so it is kind to my newly sensitive chemo skin. 

Because chemo effects all your fast dividing cells, this means your nails too, they become weak and flakey, which mine already were so now they're weaker and flakier!!! So I have given them their own armour too - shellac!! I have had shellac on my nails constantly throughout chemo, I have had it done every two weeks and I haven't gone a day without it. (Make sure you do not pull off your shellac if it starts peeling because your nail will probably come off with it now that they are so weakened!!) Apparently going for a dark colour on your nails helps too. Not only is this saving your nails but what better excuse to go and treat yourself than the fact you are having chemo?!

Talking of treating yourself, I have also been having free weekly massages done at the Wessex cancer trust centre in chandlers ford (You have to take advantage of everything that is offered to you!!) and I love them, they are so relaxing and I usually go home and fall asleep for the rest of the afternoon!

I have always been a bit of a perfectionist in terms of hair, makeup, my fake tan and my outfit etc so being given a scar (not a head turner, I admit, but still a scar) across my neck kinda pissed me off actually. But I was given an amazing scar cream from a friend which I have been told is used on burns victims and completely gets rid of the scar if you use it often enough - Its called Regima Scar Repair, it works on new scars and old scars, but it is fairly pricey I think. I have definitely seen a massive improvement even though the scar is only a few months old! I guess whats more difficult to accept about the scar is the story behind it other than anything else, a constant reminder of my diagnosis across my neck! yay!

I bath all the bloody time, and I have finally found the perfect additive for my bath, Olverum bath oil!! It is full of essential oils for soothing aching muscles, relieving stress, promoting a restorative sleep that can help revive a tired immune system and it also leaves my skin silky.

I have also come across a few more tips on the hair side of things… So I had always been told try not to brush your hair and try to wash it as little as possible when going through chemo. I totally ignored these tips, because I couldn't not wash and brush my hair frequently… and actually I was right. After listening to a podcast with a specialist on cold caps featuring on there, she was talking about how to keep hold of as much hair as possible. She said to brush it, otherwise the hair which has fallen out will matt into your other hair. But also she said to wash it as usual because your scalp needs to be cleansed! However, be mindful when using the hairdryer and use it on a lower setting and don't use brushes which tug too much. I think a regular paddle brush works just fine!

Unfortunately I don’t have any tips regarding eyelashes and eyebrows as of yet because mine are still intact… But I do wish that I had had my eyebrows micro bladed before I started my treatment, because they have started to thin and I hate how my eyebrows look when I draw them on.

Although I am doing all of these things to make myself look better on the exterior, it doesn't take away from the fact I have definitely lost all of my confidence, I don't feel like myself at all. I don't know if this has anything to do with my looks to be honest, its almost like I hate my body and its connection with this illness. I understand that its doing amazing things and fighting cancer which is impressive. But its difficult to be liv when I feel like i’m cancer. Thats something I swore I would never feel but I definitely underestimated how difficult it is to not let this take over your life. I wonder how long it will take for that feeling to go away?

But one thing I will say is that I look back on photos of me from a year ago, or even just at the start of this year, and think wow what I would give to look and feel like that again. But I remember at the time I was massively picking on myself and putting myself down about the smallest of things. Guys, LIFE IS TOO SHORT. Love yourself!!! Cos why the hell not?! No one else can see these things that you are putting yourself down for.

SHARE:

Tuesday, 3 April 2018

My hair so far

One of the most common associations with cancer and chemo-therapy is hair loss. I think thats why I was so scared to loose mine - the thought of becoming so easily associated with the illness, and to become the face of cancer to so many people around me was definitely frightening to say the least.

My hair started falling out when I was admitted to hospital at the beginning of March, after just one chemo. It never came out in clumps but always separate strands from all over my head, which probably made it much easier to cope because it meant I didn't have any completely bald patches on my head. 

So many people said to me that I would find it distressing to have my hair falling out, but I have to admit its been more irritating to be covered in strands of hair all the time than a distress. People are constantly picking hair off of my clothes - it literally gets everywhere!!!

At first it was falling out thick and fast, but now it seems to have completely slowed down. I maybe even say my hair isn't falling out at all right now! So what if it doesn't fall out anymore than this? Maybe I will be one of the lucky ones and hold onto what I've got for the duration of my chemo?

Although my hair is very very thin and I would say that over 50% of it has fallen out, what I'm left with is still acting as a cancer disguise for those who don’t already know I’ve got it…  Something I cant seem to let go of. 

However that doesn't mean I haven't found it difficult to cope with how different it does look. I hate my hair now, its not me. Probably as a result of this I feel like I have no connection with it, and right now I wouldn't be afraid to shave it off if the time comes. What I've got left doesn't look like my hair anymore and so maybe I would be happier without it? A constant battle in my mind. I am sure I will look back at the end of this and laugh about how I thought it was my hair that defined me and my identity. 

But for now I want to talk tips and tricks, what I’ve learnt about disguising my hair so far. Hopefully this will make the process easier for somebody else… Oh how I would have loved to read this blog post 2 months ago. 

Firstly, if you have got long hair, cut it short. There is no point in having long strands of hair all over your clothes when you could have short strands of hair all over your clothes?! Short hair also looks thicker than long. 

My hair is very thin around the front, and that was the first thing I noticed, so I got a fringe cut, which means I can pull hair from further back to cover the nasty thin part at the front… genius!! 

A fringe has also come in handy when wearing hats and turbans/ head scarfs. I went out once wearing a turban with none of my hair showing. It was daunting - I felt cancer-ish. So from then on I wore my fringe coming out of the turbans and hats (looks like a completely normal head of hair because you can't see my scalp). I will attach photos in the blog post of all of the different things I have tried out so far.

I do also have a gorgeous wig - which I have only had the balls to wear once!! I felt that people were looking at me and trying to work out if it was a wig or my own hair - it is probably a good sign that they had to look for so long to work it out, but even so, I did feel self conscious. The other thing to say is that it is uncomfortable, they're itchy and hot. I wore it to the shops and I was absolutely boiling, its a nightmare to try clothes on with too. 

I got my wig from the little princess trust, I had so many different options, real hair or acrylic, 100's of styles and colours. I chose to get a wig the same colour as my natural hair, but in the style of the bouncy blow dry I always longed for. I chose to get an acrylic wig because I felt that the real hair ones were so heavy and thick and looked so wiggish on my head. The acrylic one has far less hair and looked more like real hair than the real hair wig did? The wig also doesn't need styling, it will stay in the style it came in forever even when you wash it. I decided to get two wigs which were exactly the same because I was able to have more than one but I didnt like how any of the others looked on my head. I plan to get one of the wigs cut shorter, into a less glamorous style for a more every day look. I was warned that the wig will become tatty with lots of wear (because I chose acrylic), but as soon as this happens to just let the charity know and they will give me a new one straight away. 


I understand for some people that the only option is to wig it or wear a turban/ hat with no hair showing (because you have no hair) but I guess what I am trying to say is that I am glad that I held onto my hair for as long as possible. At first I vowed that as soon as it started falling out I would shave it off because I’d find the process too distressing, but I am so glad I didn't follow through with that because the longer I look normal (ish) the better!

My hair before any treatment

After hair cut off for The Little Princess Trust


Thinning hair at the front


 Fringe to disguise the thinning - slight bald patch at the top of my head


 My wig


Zara scarf

Hat from French Connection

 Search 'glitter turban' on ebay to find this and loads of other colours





SHARE:

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.

PICC Line

Cannula





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

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.
SHARE:

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.

Overall...
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!





SHARE:
Blogger Template Created by pipdig