Living with a Hickman line

For those of you who don't know, a Hickman line is a very long thin tube inserted into a vein in your chest and tunnelled through to one of the chambers into your heart (i believe). Two tubes then dangle out of your chest down to the bottom of your waist - so yes they are very long and can get in the way sometimes! Here's a picture...

The doctors decided to take the port out my arm due to my chemo being more complicated.

The port in my arm looked like this:

(it's the small bump in my arm) and essentially it does the same job as the Hickman line the only difference is that the port has to be accessed by needle every time you need to use it and can only have one tube in it at a time - it's also hidden under the skin which in many cases is a huge bonus.

When i first got my Hickman line put in it looked like this: (sorry for the blood in advance)

I woke up feeling like i had been kicked in the chest (multiple times) but i also felt it wasn't as big as i thought it would be. Little did i know the tube had been wrapped up in bandages and when i took them off i would get a huge surprise as to how long they actually are.

Day to day i don't really realise them being there. The only times i notice them are when:

1. I'm sleeping and the two massive clamps (stopping blood from coming out) dig into my side. They wake me up regularly because both of the clamps sit just below my rib cage and when you sleep on the same side that your Hickman line gets put in (like me) it can be painful and annoying.

2. I want to summer tops. Typically summer style tops show a bit more of your chest and belly but having the line in and wearing summer tops makes them really visible. I don't care about people seeing my line but i always want to be careful i don't catch it on anything because these lines have a habit of falling out if they are pulled even slightly to hard.

3. I want to go in the shower. I simply can't go in the shower with the line in because it's not aloud to get wet. If the line gets wet theres a chance it will cause infection and with my low immune system its not something i want to happen. So, instead i go in the bath i have to tape my lines up and wash with a flannel because i have to sit up in the bath and only have the water to waist height.

The major benefit of having a Hickman line is obviously that i no longer need to get needles every time they want to check my blood!! The nurses can just take it directly from my lines. Sometimes when they take the blood out my chest feels really warm and when the salty water goes in to clean my line my chest can feel really cold!

Since my treatment has finished my Hickman line is due to come out in the coming weeks/ next month or so! I couldn't be happier at the thought of a long hot shower!

Lauren :-)

I'm Back!!!

I've finally came back from being in hospital for three weeks and rather than do one massive post about my time in hospital i've decided to do several shorter posts on things that i think were more relative about spending time in hospital.

However, I will say that i am the record holder in the RVI for the fastest time of getting discharged from hospital after high dose chemo. Usually, you are expected to stay in anywhere from four to six weeks. This is because the side effects of the high dose are unpredictable and different in every person. Some times they reaction to the chemo is delayed sometimes you start to show symptoms of several different chemo related illnesses instantly.

Fortunately for me i had very few of the expected side effects and when the side effects i did get off the chemo where easily controlled and managed by various medications - which made me a lot more comfortable during my stay.

Don't get me wrong i didn't completely 'sail through' the treatment. I had zero neutrophils (things that fight off infections) in my body for around a week and i kept on getting high temperatures. I had an infection and the doctors didn't know what the infection was (despite various tests). I was on three or four different antibiotics at one point and was near enough always on hydration because i struggled to drink the required two litres a day.

AND

the boredom of being stuck in a hospital bed all day everyday with only your parents for company isn't something i would want to go through again. To ease the boredom of being in hospital my mum suggest i watch Game Of Thrones with her as she had already watched all the seasons and said they where really good. I still have season four and five to finish but, so far i'm actually surprised by how much i enjoyed them.

This is a picture of me after i had finished a week of high dose chemo.

The medal says 'Winner' on it and i think its fair to say i feel like a winner after all this treatment!

Lauren :-)

Nosebleeds, A&E and Blood transfusions

I actually started writing this blog post last week - but nurses came in the middle of me writing it to give me my GSCF injections and i totally forgot to finish after that - Oops!

Due to having such a hectic month i haven't had chance to post so sorry if this one is a long one!

After my second round of chemo the doctors decided to check my progress to see if the treatment plan i am on is effective. So, on the 16th of June i had a hearing test and a kidney function test because the chemo that I'm currently having is know to damage hearing and kidney function. The test results came back relatively positive - my kidneys function normally and i've lost some of my hearing with the higher pitches but my consultant reassured me that, that doesn't really matter as in everyday life you don't really use the higher pitches. Losing your hearing only becomes a problem when it goes into the lower pitches.

Two days later on the 18th of June, my dad took me for a PET CT scan and a Ear, Nose and Throat (ENT) checkup at the Freeman's hospital in Newcastle. The PET CT scan involves a small amount of radioactive dye going into your body, which then shows up on the scan on all the 'active sites' i.e heart, bladder and tumours. The scan itself takes around 25 minutes of laying very still with your arms above your head.

On arriving at the ENT appointment the receptionist told me an emergency appointment had been booked for the specialist to have a look at my nose. As I've been suffering with nosebleeds since i was very little and this problem needed to be sorted out before i started high dose chemo at the end of July. Obviously, being told you have an emergency appointment booked unsettled me as i was told the specialist was just going to look up my nose to see if anything could be done. After going in and the specialist having a look up my nose he turned round to me and said "Well, lets get it done then!". And by getting it done he meant getting my nose cauterised!! The process itself was fairly simple and painless but afterwards dealing with a stinging nose was a bit of a pain.

The next day was my little sister, Jessica's 12th Birthday.

We took her out for tea and bought her a special birthday cake - we all really enjoyed the night!

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After having a relaxing weekend with family it was time to start chemo again. This time wasn't as smooth as last time. Although my blood sugar levels never got as high as the have with the previous two chemo's, my body had became too accustomed to the dose of anti-sickness i was on and i was sick a few times during this course of chemo.

I was back the following Tuesday for bloods - which where low but not bad enough for any transfusions.

That night at 4am i woke up with a nosebleed - it was the most uncontrolled nose bleed i've ever had. And then blood started coming out of my eyes! At this point my parents decided to take me to A&E to get checked over and to see if there was anything the hospital could do to stop my nosebleed. The doctor needed to take my bloods and unfortunately she took three attempts to get my cannula in! Which left me with two big bruises on my hands!

After checking my bloods, it turned out that my platelets (the thing that helps your blood clot together) had dropped to 22 - when the usual level is in the 300's and i needed a platelet transfusion. But first they needed to stop the bleeding with another cauterisation! The ENT doctor came down to A&E and pulled two large blood clots out my nose and then cauterised a large area of my nose (which is still painful today). I then received my platelet transfusion.

After i had my transfusion i got in the ambulance and had a trip up to the RVI in Newcastle so the doctors up there could check me over and make sure they were happy with everything. They made me go back the next day to check my blood levels where all still okay. My platelets had dropped to 9 and i needed another transfusion.

The next week was dedicated to making sure i was in tip top condition for high dose chemo which starts on July 22nd.

So, on the following Tuesday i was back in Newcastle for bloods, an ENT appointment and a hearing test. My blood results were significantly lower than what they should be and the nurses told me i needed three bags of blood.

My hearing test went smoothly and the ENT doctor told me i needed my nose cauterising again but this time on the opposite side to my previous two! Thankfully, i didn't get any pain from my third cauterisation!!!

The next day me and my mum were back in Newcastle for a Kidney function, Heart echo and Lung function test. I'm still awaiting the results on my Kidney and Heart Tests but my Lung function tests came back all positive!!

And then the day i had been dreading all week had came - the day i had to get my baby tooth out. After the dentists had a look at it the first time they concluded that it was at significant risk of developing an abscess if it was left and that was too risky when i was having high dose chemo in the coming weeks. The dentist numbed my mouth the started the gruelling process of injecting around my baby tooth with local anaesthetic - it took 15 injections for my tooth to be finally numb before they started pulling it out which i could still feel.

And thats everything that was happened to me in the last month! Currently I'm waiting for surgery to put my double hickman line in on Friday then to start high dose chemo on the following Tuesday! Until then i'm going to chill out at home and take things easy for a while because i know when i go in hospital i won't be out for a few weeks after!

Lauren :-)

Meeting Ella Henderson and Pizza Hut!

Okay, so i'm really terrible at keeping my blog updated because its been two weeks and i haven't posted anything...again!

On the 19th of May i had my stem cell harvest and as traumatic as it was i got through it! The needles were ABSOLUTELY huge - one in my wrist which was AT LEAST 2 inches long and one in the back of my elbow which was probably the width of a pinky finger. I had to have to local anesthetic because they were so big. The doctor who actually put my needles in said most adults flinch when the needles are brought out as well and i didn't so i was proud of myself for that!!!The experience itself wasn't as uncomfortable as i expected despite two needles being stuck out my arms and my dad having to feed me, the four-ish hours passed relatively quickly and i was super thankful for that!!!

This is a picture of the bruise on my wrist a few days after the harvest and it got ALOT bigger and ALOT greener than this!

Also, on the day was the TCU 5th birthday in Newcastle so as a little surprise for the patients they arranged for Ella Henderson (X-factor 2012), who was touring with take that to come in surprise everybody! She was so lovely, we ordered lots of Domino's pizza, drank pop and had a big Teenage Cancer Trust cake for everybody to share! I didn't really get the chance to have a full conversation with her because nurses were pulling me out of the TCU left, right and centre for blood tests and all sorts!

After, meeting Ella and having my harvest nothing particularly interesting happened - until the next on a Saturday.

THE ONLY Saturday where it had been a decent temperature and the sun was shining was when my body decided to plague me with severe neck and back muscle cramps. And obviously that resulted to a trip to A&E where they found that my blood pressure was seriously low (82/45) and my heart rate was running way to fast (118). So the doctors instantly stared me on hydration and antibiotics for a chest infection which they suspected me to have and sent me off for a X-Ray. My blood pressure was so low they would let me stand up just in case i fell over and what can i say i wasn't complaining that i got to be pushed around everywhere on a bed - haha!

Unfortunatley though, they did have to put a cannula (in my wrist - again!!!) to get the medication to me as quickly and as easily as possible - but this nurse wasn't gentle and didn't skimp out on the size of the needles she used!

This was probably one of the most painful cannula's i had.

Whilst in A&E the doctors were still slightly concerned about the pain i was experiencing in my neck and back so they whisked me to Newcastle in an ambulance - for health and safety reasons. I had to go in the Ambulance by myself as well but the paramedic team were lovely and kept me happy whilst travelling up there. That night i had to stay in hospital and although i REALLY wasn't happy about it because i felt fine they insisted on keeping me in - just in case of emergency's. Everything worked out well and i was home by the next morning - which wasn't as sunny as the Saturday and only half as warm :-(.

After, being in hospital my little sister (Jessica) decided to surprise me with a small gift.

Well i looks really big on here...But it was a small chilli plant and two big bars of galaxy chocolate - yum!!!

I also decided to treat myself for when i went into hospital the following Wednesday and i bough myself a little colouring book!

You're never too old for a colouring book - right?!

After, i went into hospital on the Wednesday the doctors had managed to get my balance of anti-sickness medication right and i wasn't sick at all during my stay. However, it isn't always this simple as when they checked my blood sugar levels the were super high and they sent me home with a finger pricker - to check my blood glucose levels and needless to say i wasn't happy about it. After a few days my bloods settled down and now everything is back on track!!

Yesterday, the majority of my friends had finished their exams for the summer and to celebrate we all went to Pizza Hut. We had practically every type of pizza on the table, fries, drinks, ice cream and cookie dough desserts!!

Lauren :-)

May Update

Okay so this blog post is going to be relatively long because i haven't posted in two weeks and ALOT has happened since then.

I started a new type of chemo called DHAP on the 6th of May and for the first day or so i was coping really well with it.

The Teenage Cancer Unit (TCU) held a quiz/pizza night and we had the chance to win some prizes donated by a local charity. And i also got the chance to meet the other teenagers in the TCU and talk to them about everything - because they of all people know what its like to be young and ill. I also found out that I'm not nearly as good as i thought i was at general knowledge and  with names of singers because our team lost...twice.

The chemo i started had the most wires i've ever had going into my port - three at one point! I also had two drip machines,which really isn't fun at two in the morning when they beep every five minutes telling you they have finished.

In addition to that, i had to have steroid based eyedrops every four hours and needless to say it isn't fun been woken up with a nurse shining a light in your eye for the fourth time that night whispering "It's time for your eyedrops!".

After, this i became very ill. I couldn't keep any food down let alone the tonnes of medication i was on so the doctors decided i wasn't well enough to go home and they made me stay in the TCU for another 2 days. I wasn't happy but i thought what i always think when i get fed up, 'it has to be done so i might as well do it with a smile'.

Later on that evening, i was visited by a 'stem cell' nurse called Holly and she explained that when i have my high dose chemo in a few months time my bone marrow won't be able to recover on its own. So, i need to start daily injections to stimulate my stem cell production so in around about a weeks time they can 'harvest' them off me and give me my own stem cells back when i have the high dose chemo. I wasn't keen on the idea of having to inject myself everyday for the next week so one of my nurses suggested that i get two tiny tubes in my arms so the needle doesn't have to go in my skin every time.

And they look like this!

They may be small but they are so painful to get put in even with cold spray - a local anaesthetic. They tiny tubes sit just underneath your skin. The injections themselves, even though they don't pierce the skin are really painful as well. I think its because its going under the skin and obviously your body isn't used to liquids being pushed under there.

The nurses sent us home with a big box of needles.

I have been having community nurses coming round every morning at ten o'clock to give me them. And because I'm seventeen and a half i no longer come under the paediatrics so adult nurses had to come round and give me my injections. They explained to me that i was the youngest patient they have EVER had and they oldest person they looked after was a one hundred and eight year old!

After having a comfortable five days at home i was called up to Newcastle for a full blood count only to find out when i was there that: my blood pressure was low, i had lost weight, my oxygen levels were low, my platelets were low and my white blood cells were so low that i was actually neutropenic . Luckily, i didn't need any transfusions. Although, i wish they had gave me a platelet (the thing that helps your blood to clot) transfusion because the following weekend i had constant nose bleeds that took hours to stop!

The nurses also left the needle in my arm so they can easily get bloods tomorrow

and when i got home i really wanted a bath to unwind for a busy day. So, me and my mum had the task of thinking of an improvisation so i would get bath water in my port. Then my mum had the in-genius idea of cutting the end of an old sock and putting it over my arm!

So, thats what it did - and it worked really well!


So curently as it stands, it's Monday i went to the hospital for a full blood count and so Holly could predict what day this week my harvest could be on and it turns out it's going to be tomorrow (Tuesday). So, its going to be me and my dad watching dvd's and eating sweets for five hours while i can't move my arms - fun...

Lauren :-)

Introduction

May 4th 2015

In the UK around 2,200 teenagers and young people are diagnosed with cancer every year. And the chances of it returning two weeks after you get the all clear, as you can imagine, are even slimmer.

I was diagnosed with stage two Hodgkins Lymphoma on September 22nd 2014. It had spread to my neck in two different places, both my armpits and both sides of my chest. My consultant reassured me  , "this is one of the most treatable cancer's for teenagers and young adults". I saw it as my 'silver lining' in a time that was incredibly grey. Over the coming months i continued going to college whenever i wasn't at hospital, writing all my essay's for my english language class and seeing friends as much as possible. Then, on the 10th of February 2015 my consultant told me i was completely cured and cancer free. We had KFC that night to celebrate, it was great.

No longer than two weeks after i received the news i felt a pea sized lump in my neck, where i first originally felt the lumps, i shared my concerns with the doctors but they felt it was far too soon for it to return after treatment and after all nothing had shown up on the scan to be concerned about. But i knew something wasn't right.

This is when the the lump grew massively and other smaller lumps started appearing. On April 14th, the doctors sent me for a biopsy.

Almost, seven months to the exact date on April 21st, the doctors told me i have cancer...again.

And this time i've decided to document my experience.

Anyways, enough with all the sad stuff i am trying to remain as positive as possible with a little bit of help from my family and friends!

Lauren :-)