The final chapter- Sadly not finished

In July last year (2013), I went to my auntie and uncle’s house in Cyprus with Dad, Julia, Auntie Maria, Uncle Mic, Lucy and Liam. We had a lovely time, I felt well and was able to walk along the harbour and enjoy the see view. Lucy and I stayed up for hours at night talking about all sorts, funny and deep which was nice to really tell each other how we felt. Liam stayed up with us some nights making us laugh being his usual weird self. I was also Lucy’s drug dealer as she had an ear infection, giving her pain, so I shared out my quick release morphine (shh don’t tell anyone). Most evenings we were both a little high because of this lol. Unfortunately, during the holiday I started losing movement in my right arm which upset and worried me. The day after we got back I was admitted to Addenbrookes for scans. They showed that the day Chemo wasn’t working on the tumour in my neck. It was pushing on the nerves on my right causing pain and the loss of movement in my right hand. I was put on steroids to help take the pressure off the nerves and told I was to be put back on intense, impatient chemotherapy. This time Etoposide, which I’d had along with another chemo before when I relapsed the first time. We were of course devastated by this news; it was meant to work and keep it at bay. I’d hoped for so much more. I’d planned to go to Uni in the September; I’d been accepted at all of the Uni’s I’d applied to, doing my dream course: English and Creative Writing. I’d worked so hard through treatment and missing loads of school, basically teaching myself a lot of the work and revised incessantly to get my grades. It seemed so cruel for something out of my control to stop me from going and making something of myself, when people who didn’t work nearly as hard as me and messed around, get everything handed on a plate to them.

A couple of days after I’d been allowed home, Lucy and Liam came to see me. Lucy had been planning to get a kitten and we’d spoken about it quite a bit; I really wanted one too and we could get them for free! I didn’t think my stepdad would let me, but … he did! So that evening we went to collect out kitties and fell in instant love. Lucy’s a boy, Milo, and mine a girl, Mila… or so we thought. I had her for a couple of weeks when she got a poorly eye and I took her to the vets to find out Mila is in fact a HE! I renamed him Leo and it took us a while to stop calling him a her. He is literally my baby. I’m a bit obsessed, but he is so beautiful and affectionate. He follows me everywhere, even when I’m in the bathroom his scratches on the door and I have to let him in. I just couldn’t miss out mentioning him!

I was worried about going back on impatient chemo, how I’d feel and how my mindset would be. I also had in mind the holiday I had planned with Mum, Cat and Lisa to Barcelona in September. Because I wanted to be able to swim in the pool in Barcelona, I had a pic line put in rather than a hickman line as it is less intrusive and easier to put in and take out ready for the holiday which was after my second cycle. I was surprisingly well after my first cycle, but after the second got an infection only days before Barcelona. I was out for lunch with my friend Gemma when I got a temperature. I rang addenbrookes and they told me to go to my local- Peterborough, but I knew I wouldn’t get sorted there and like always would end up in Addenbrookes anyway and wouldn’t be out in time for our holiday. I cried, so they could tell how upset I was and Emma, the sister on C9 allowed me to go straight there to Adders. I managed to get out the night before holiday and we made it to Barcelona. We had a lovely first day site seeing and evening enjoying yummy Paella, but I woke up the following day with the shakes and a rocketing temperature. I spent most of that day in hospital, the doctors back in England on the phone struggling with the language barrier. I was discharged with oral antibiotics. That evening my temperature went up again, so I kept topped up with paracetamol to disguise it and make me feel a bit better. The following morning, I again woke up with the shivers and felt rubbish, but refused to go back to that hospital. I was ill for the rest of the holiday, however from the pictures I posted, I looked well and noone back home could tell. Mum made me relax by the roof-top pool for the remainder of the holiday accept for when we went to see Gauhdi’s cathedral, as I was adamant I had to see it. Once we were back in England I was taken straight from the airport to hospital. Being ill for that week and not getting sorted set me back for weeks. Chemo was postponed a week, but I still hadn’t fully recovered, so having that along with Radio and being ill anyway exhausted me. I didn’t recover for over a month.
Another problem was drowsiness. Even if I was just at hospital for clinic for the day, in the car, half way there, I’d get a croaky throat and become very sleepy (it still happens now). By the time we were there I couldn’t finish a sentence. After the 3rd occasion my consultant joked that it must be her face having that affect on me. With chemo the drowsiness got worse, even with a drug meant to wake me up. The doctors worried that the chemo would cause swelling on my brain, so it was lowered and then stopped in November, earlier than planned. Scans showed that the Chemo had shrunk the tumour in my neck some, which we were of course pleased about. I was given a bit of a break and then put on tablet chemo for one cycle around Christmas. I was, like usual, in a lot of pain around this time and feeling unwell. Mum took me to the Gp, who even though I had a rash, didn’t bother looking at it. On new years day I ended up in Addenbrookes, very out of it and had shingles all along. I was in for the first couple of weeks of the year trying to get over the shingles and get to the bottom of my drowsiness. They did a lumbar puncture to see if I had an infection on the fluid on my brain, but it was fine. Still no explanation. During this stay, my right hand lost movement again, so I was given more radiotherapy.
The tablet chemo was changed to Liposomal Doxorubicin, which is a different version of the red chemo I had the first time. The difference is that this version is in a fatty molecule that releases the chemo gradually, everyday over the month. The reason it was changed was because I kept asking my consultant to find a chemo in which my hair would grow back. My hair has grown back, and for a while the chemo seemed to be working well at keeping the tumours the same size. However, we were given bad new of a new tumour lower down my spine. I was again given more radio.
A couple of weeks after being told positive scan results, we were told that the chemo wasn’t working. I would have to go back on intense chemo. Not only had the tumour in my neck grown, but 10 or more tumours were found in each of my lungs. My world completely fell apart. </p

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2013- Starting Chemo again

So once the excitement of Ryan’s 21st was over, it was back to recovering from my op and then getting prepared to start Chemo again for the 3rd time. All sorts of feelings were aroused. I was anxious about how ill I’d feel, worried about how I’d manage to study for my A Levels, whilst actually going through treatment and upset about having to lose my hair all over again. It had gotten to such a good length!

It happened to be that Mum and Mark were due to go on holiday the week I started, and Mum said at first that she wouldn’t go. She felt guilty leaving me on my first cycle, but I told her not to be silly and to make the most of her holiday as her being here wouldn’t make any difference to my chemo. You can understand her concern, and deep down, I was also sad she was going, but Dad was excited to have me stay for two weeks and I hardly ever do stay over now I’m older. It was lovely to have quality time with him. Mum was so sweet though and gave me a tin the night before she went. It was full of little presents; one for every day that she was away. This itself made me happy, it gave me something to look forward to each morning. She also got Lucy to bring in a Pandora ring to school, to give to me before assembly, so that I’d open it just before she was boarding the plain. Mum had thought it out very well! It is a beautiful ring and I have worn it every day since.

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In March 2013, Dad and I went to Addenbrooke’s Oncology outpatients clinic to get my blood taken and weight measured. This time I was having day chemo, but two different types on the same day- Docetaxel & Gemcitabine. (One of them had to have a little coat over the bag so that it didn’t react with the light.) Day Chemo seemed the best option at the time; my consultant didn’t know how much more Chemo my body could take after already going through two lots of intensive chemo, and it gave me more time at home. Originally when I relapsed last year, there wasn’t even talk of having Chemo, it was just the Op. However, Helen had had to deliver us the heartbreaking news that the Cancer would keep recurring, there is no getting rid of it. I’d relapsed twice very close together, so they knew that it would keep on happening. Mum and I cried, I didn’t want to leave my mum and that’s all I kept thinking, my eyes felt really wide and crazed in disbelief. I cried more when I realised that we’d have to tell Dad when he got back. I didn’t want to see his face crumble.

After lots of stabbing in my hand to get a cannula in, and a long, long, wait, the Chemo did finally get pumped into my veins. As it was day chemo, it seemed pointless having a line in, however this meant going through having numerous needles jabbed into you to try to get a vein. The problem being, you can only have Chemo through a cannula that has been inserted below the wrist. This is because Chemo is toxic, and if the tubing or cannula was to leak, it’d leave the least amount of surface area for the Chemo to burn and affect. They’d given me a microwave teddy to try to heat up my hands and get some veins up. Over time I had Marley the Monkey, Dan the Dog and Peter the Panda, as we felt the need to name them. I remember that particular day, we were the last people in the whole of the Clinic left waiting; my bone inhibiter drug was still running through. The clinic had gone from being cramped and buzzing with people, to the quiet lull of staff almost mechanically finishing their last jobs off, and for my nurse, hoping that my infusion would hurry up so she could get home! It was 8 by the time we left. That was a long day.

I didn’t feel ill to start with but, that familiar nauseous and lethargic feeling caused by Chemo returned once again. It was nice staying at Dad’s and getting into the Game of Thrones, and with him or Julia bringing me up breakfast, snacks etc if I was hungry. Whilst they were at work I got to work on my History and English coursework. Emailing drafts back and forth to my teachers’ so that they could be checked, and doing as much as I could even though I couldn’t be at school. Catriona and Liam came to see me in that week which was lovely also.

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I can’t remember, exactly, where this set of bad news fits in, so I’ll stick it here. I begun to get a dull ache in my back and when rubbing it, I felt a lump. I expected like usual, when something hurts, you feel as if you have a lump. I got Mum to have a look and feel, and then she called my Dad to come over for another opinion. I’d never had a lump before. They both said they they could see the left side of my back, just level with my bra strap, sticking out from my spine towards the left. After a scan, and after being high off some sort of energy for the last week, I think I almost hit rock bottom. I got home each day and went to bed, just lying there, curled up. They said it would keep coming back, but I didn’t think this soon! At this rate I wouldn’t even make it until my 21st. You always envision a future for yourself, a job, getting married and having kids, and when news like this is given to you, it is all stripped away. All of a sudden you can’t see anything. It’s just white, or black, either way it’s gone and you can only envision the very near future and how you’re going to get through it step by step. I spoke to Dad about it, and we both cried. He wanted to envision my future too. I said how I don’t want to go and leave them and he said that he didn’t want me to either. I unconsolably cried, even whilst I was in the bath, until it seemed my tears had dried up and all I was doing was pulling an ugly face; a face full of grief. As you can imagine, it wasn’t good news and a tumour had grown in a new place.

I had my mind set on Kirsty’s 18th Birthday Party. I had to be well for that and I willed for my hair to last long enough for it. Dad, Julia and I also had us a Sterophonics concert to go to! We always said we’d go to see them. Unfortunately, I did become very unwell later on in the week, but managed to go to the convert; I do not know how because I felt vile. Somehow I still managed to enjoy the music. The next morning when Dad asked how I was, we could both see that I wasn’t good at all. Straight to Addenbrookes, ward c9, we went. I was again poked and prodded. This is a lot harder to put up with when you also feel very very unwell. I ended up crying to the nurse, Dory, and asking them if they could just get it in, I was tired. As soon as a good vein was found, they had antibiotics running through, and IV paracetamol to bring down my high temperature. Antibiotics are seriously a God- send. They make you feel so much better fairly quickly. Bloods were also taken from another vein to get a culture to see any cause of infection. It takes 48 hours for them to be processed in the lab so I was in a bay for a couple of days before they realised I had the flu and was dangerous to other patients. They wheeled me and the bed into a side room and all begun to wear surgical masks. It actually upset me; I felt like I was a germ being exiled. I literally seemed to sweat out the flu that day, and my transformation from when Dad had left to go to work in the morning, to him returning to hospital early evening was amazing. They were talking of taking me to another ward, which sounded horrible, and Dad also felt like they were exiling me. Luckily I was allowed home shortly after on oral antibiotics. I still didn’t feel great, but had the most of another week to feel better for Kirsty’s 18th. It came along and I was well and got to enjoy myself greatly, and it seemed the Birthday girl herself did, of course. I remember getting all soppy and tearful when I was writing a message to her and remembering all of our years of friendship. (Our Mum’s are best friends you sees, so we had to put up with each other paha- luckily we get along very well). All of her family came from afar and my family (which are basically hers too) came, so it was nice to all be together. I also got to enjoy feeling confident with having my hair.

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I managed to squeeze in a night out in town with Kirtsy, my cousin Adam and a few others whilst my hair still visibly looked intact. Mum was home by this point and as she had blow-dried it, literally a head of hair came off onto the floor. Luckily I have thick hair, so I still had a convincing amount of hair left on my head- phew! I just had to keep brushing it off during the night. I unintentionally wore black, but it helped as my hair was pretty much black, so it was disguised if any was on my shoulders. It ended up being a good night.

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It was Easter Sunday 2013 when Mum actually shaved my hair off again. I had worn a hat for a few days with my fringe poking out and managed to pull it off. That morning though, it wasn’t a pleasant sight. I’d slept in my hat so it would catch my hair and not go everywhere I went. Looking in the mirror as I took it off and seeing most of it come off with the hat was awful. I had a fringe, bold patches and then lots of whispy bits. I think I’ve said before, that I always thought I looked like the witch out of Snow White and the Huntsman (when she gets old again obviously). I then knew it had to go; there was no point keeping dreadfully ugly hair and, bless Mum’s heart, she had to shave her daughter’s hair off for the 3rd time. I was waiting for a wig from the Princess Trust, so didn’t have a wig for the first couple of weeks. I tried to rock the hat and hoops look. I didn’t want anyone, except close friends to know that I was ill again, so I ordered a wig that was the same length as my hair and a very similar stye. It seems that it worked as a lot of people only found out I was ill again when I started writing my blog late July- August 2013. I was actually pleased with it, but it again chipped away at my confidence, not having hair.

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It was planned I continue on this Day Chemo regime for  6 cycles with a scan after the third. Not long after having the op, I started getting bad pains in my neck. The surgeon said my latest X-Ray looked fine from his point of view and denied our request for a scan. The thing is, he is only looking at the success of the operation and not how anything is oncology-wise. Mum and Dad pushed for a scan, as we have sat around doing nothing too many times and something was wrong each time. My consultant’s registra and specialist nurse agreed I have the scan, so it went ahead. The week waiting for the results was really hard. I’d hope it be a problem with the surgery and not a Cancer problem. I knew it wasn’t going to be good news and I feared the worst. I feared that they tell me there was no more they could do. Both Vicky and I waited anxiously in the waiting room to see Helen for our results. Unfortunately, neither were good. On the contrary, I was relieved by my results, in fact I cried with relief. I had feared the worst, and for them to say that they could do Radiotherapy on it was to me, good news. Gale, my Radiotherapy consultant is very good at explaining things, so we got a good view of the scans and an explanation on what as going on. The annoying thing was that we were told by the surgeons they had gotten all the Cancer out, or they at least made it seem that way, when all along they knew that the Cancer had spread to around the nurves in my neck. Now we can understand the horrendous pain. In may 2013 I had a mask made to keep my neck still for the radio and a small tattoo on my front so that they could line it up to the tumour in my back. The radio started during my weeks meant for A level revision, so every night after school I went to the hospital for radio and brought my revision with me. I was at first really scared about being pinned to the table in a mask, but a bigger problem showed. Laying down. I couldn’t lay down without being in agony. They tried the mask on and got ready to start it, but I cried and had to tell them to stop; the pain was too much. From then I had to have 2 quick release morphine tablets before I went in so I couldn’t feel the pain. I ended up falling asleep and dreaming strange dreams. I realised after a few nights that when I lifted myself back up the pain went midway, so unable to get comfy on my back, I simple rolled to the side into the fetal position, with my head angled down. I said something along the lines of: ‘Perfect, I’ll just stay like this for a while.’ I slept like that each night until the radio had shrunk the tumour and relieved the pain. Radiotherapy itself is very quick; it’s over in seconds, and on the days you’re having it, you don’t feel a thing. OHH.. but then it comes! Having it on your neck is deemed one of the worst places, because not only does it burn the skin on the outside, but it also does on the inside and it hurts like mad! Swallowing my own saliva was like swallowing razors, it was awful. You also get this sudden bout off fatigue that hits you and with so much force that you can’t get out of bed. You just feel so tired. The first time I thought I must have needed a blood transfusion, so called the hospital, but they said that it would be the radio. Great! So I just had to be unbelievably exhausted, with a burnt throat, burnt skin on both neck and back, also still meanwhile having chemo and revising for my A Levels! I was admitted to hospital on two different occasions whilst the effects of radio were there ( and it always seems to be on a bank holiday). I was severely dehydrated without knowing at one point, because of not drinking due to the razors in my throat, and it took 6 hours to get a cannula in. I was then sent home from my local , the following day, as I pleaded that I needed to be home for a day of Chemistry revision at school. Three hours after being home, my temperature rocketed again and this time we went to Addenbrookes rather than Peterborough; it always seems to get sorted properly that way. At first I refused to go back in via A & E. It had taken 6 hours the day before, there was only one doctor around since it was a bank holiday and I was just too tired. Dad made me see sense and I was admitted, along with all my revision- my exams started the following week! The only nice part of it all was that Vicky and other ‘hospital friends’ were in so one night we ordered pizza (which I spoke about in one of my earliest posts). Vicky’s lovely friends came up too. It shows how TCT wards really do benefit teenagers, not only medically, but mentally and it is one of the last nice memories I have of being with Vicky. Eating banana on toast actually had me thinking of her too, funnily enough. She was a lovely and amazing person I tell you now.

Unfortunately there is far more that went on last year to follow on from this, but I’m going to wrap it up as this is a veeerrrryyyy long post.

 

 

Mind Games

The present

Today is a strange day. To be honest it’s been a strange couple of weeks. I feel so well at the moment so it’s hard to believe that I’m so ill. (We moved our holiday forward because of treatment and I got to go to my dream destination- The Amalfi Coast!!! I went with my three favourite people, Mum, Dad and Ryan. It was my favourite holiday for sure). I can’t get my head around it. It feels like my mind is playing tricks on me. I really don’t want to have any more Chemo, my whole being wants to refuse it, but I know that would just be giving up and I can’t do that. I have such a feeling of desperation to live and to be healthy. Why does my body have to fail me? Only if the chemo I was on had just worked and I could keep my hair, I love it.
Waiting for it to make me feel ill is one of the worst bits; it’s like I’m choosing to feel rubbish. I don’t know how I’m going to feel when I start this new lot of Chemo (Methotrexate) today or how my body is going to cope. I have had this treatment before, but it’s being given in a different pattern if cycles. Hopefully I won’t feel too bad, but it’s intense chemo and my body has been battered so many times I’m worried I’m not going to have a chance in between cycles to feel well. I suppose I will soon find out.

Dad and I are going down to Addenbrookes this morning and mum is coming up after she has done her client. I don’t even know what line they’re planning to put in me, or even if they have booked in for me to have one, which is a bit worrying. By line I mean either a Hickman line, portacath or pick line for the Chemo to be pumped into my veins through. The day I initially go in is always worst because it seems like you don’t get left alone. Anyway I best get out of bed and ready to face the day.

An update on how the day went. I was booked in to have a pick line put in at Vascular Access, which goes in a vein in my arm right round to near my heart. I had two put in last year and apart from the stinging of the local anaesthetic being put in and it being uncomfortable, it went well both times. However, yesterday was awful! My veins in my left arm are too small and she hit my nerves. I screamed, but she carried on pushing it in. I was screaming and crying; the pain shot down my arm to the tip of my index finger. Mum had to leave because she felt like she was going to faint. There was a lot of blood, so she reckons it was a mixture of that and because she doesn’t like seeing me upset. My finger is still feeling numb now. The lady did then pull it out and said that there sometimes is some tingling. I said that that was NOT tingling. I wouldn’t have screamed if it was just tingling! Dad’s face did not look happy. She tried again in my left arm, but the veins are just too small so she set everything up to go in my right arm. I asked her if she could avoid going near my nerves at all because I was scared. When looking on the ultra sound she could tell that there was a large vein there and it was put in how it is meant to be. I then had to go down for an x-ray to make sure it is in the right place. Back up at Vascular Access they had to pull it out a couple of inches, apparently because I’m quite small, and then it was finally done. It was decided that they wouldn’t start pre-hydrating me until the night and would start my Chemo in the morning. This meant that we could escape for a bit for dinner, which we did. We went to the Red Lion and sat in the beer garden, it was really nice.

Today I’m very drowsy and itchy because of the Chemo; I keep falling asleep sitting up and wake up trying to grab the air, as in my dream, I was trying to grab something haha. I am not feeling too rough so far and hopefully that will continue. I brought ‘daytime’ clothes with me this time so that after a shower I’d feel fresh in the day, rather than putting on another pair of pyjamas. I feel that this helps mentally and also helps me to feel less groggy. Jack, Rosie and Ellie all had appointments today, so I got to see them in the social zone at the weekly Tuesday breakfast club, along with Fraser, who is also on C9 for Chemo this week. (Fraser and I started our own breakfast club on the following day to get people out of their bays and rooms, it was nice to sit chatting to people that I’d never met before and I think it helped Josie, a newly diagnosed patient in the bed next to me, to talk to others in a similar boat. The nurses also loved that we were all up and socialising!) Dad picked Ryan up from college in Cambridge, as he had an AAT exam for the accountancy course he’s doing along side his job, so I left the others to spend some time with him. He passed, of course, and I’m very proud of him:D That’s his second year finished now. Right, I am about to drift off again so ciao.

Mixed emotions

I haven’t written anything in a while now, and that’s because my ‘story’ is getting closer to the present. I find it harder to think about it. Writing about my diagnosis etcetera was like telling a story, because it was a while ago, but talking about the last year feels more personal.

After finding out the Cancer had returned in my neck, (3rd vertebrae) on February 2nd 2013, I was told I was going to have a big operation to remove the diseased bone and replace it with bone from my hip, a metal plate and a screw in the vertebra either side of the removed bone, to secure the plate in place. Originally there was only talk of the op, and no mention of Chemo, my consultant said it wouldn’t be needed.

Having to go out wearing my very attractive neck brace

Having to go out wearing my very attractive neck brace

I continued on at school and tried to enjoy myself before the op. I was about to go to a family members birthday do when the pain became horrendous. I lay on the bed waiting to see if Mum could find any Oxy Norm capsules (quick release Morphine based medication), and luckily she did. I said to her that in the olden days, before painkillers were made, I bet people with Cancer committed suicide because the pain is unbearable. I also said if I didn’t know the morphine would kick in soon, then I would have done the same. After a while the pain subsided and I was able to go the do. Mum rang C9, the Teenage cancer Trust ward, for advice on what to do about my pain. The nurse said if it didn’t get better or got any worse  to go to the hospital. The next day (Sunday) I met my friends Jess & Ellie for lunch in Cambridge. I remember not being able to swallow the food properly (I still can’t now) and having to cough it back up. Mum and I went to my Auntie Maria’s after. I was really doped up and they were all laughing at me because I wasn’t making any sense. At home I kept falling asleep, so Mum took me to bed around 10 pm. I took more painkillers before going to sleep. The effects of the drugs didn’t last long and I awoke at 12: am in absolute agony. I was rushed down to Addenbrookes to be monitored and to get the pain sorted. I remember getting rather annoyed with the on call doctor that was working that night. It was obvious he hadn’t even looked at my notes because he was asking questions that were irrelevant to what I’d been admitted for that night. I was there because of the pain in my neck, and he was asking questions about scars and operations that had taken place a couple of years before.  Anyway we got there in the end.

 

 

Mother and I in the days before the op

Mother and I in the days before the op

I’m not sure if fate played a part in the weeks events, but something was on my side. I was meant to meet Dr Laing, one of the top neurosurgeons in England, that Thursday to discuss the operation which was to take place in a couple of weeks time. Luckily he was available at Addenbrookes that Tuesday to meet and talk with me. I thought that was all he came up to do, but he said that while he was there he may as well do the operation the following day. This scared me a lot as I hadn’t prepared myself to be operated on so soon, but concented to it anyway. Both my parents, brother and friend kirsty were with me before I went down. I fell in and out of consciousness, however somehow managed to join in with the conversation as of I’d been listening all along. When it was time for the surgery I was scared and upset. I think because i’d been sleeping, I again wasn’t prepared for when they came to collect me. Tears streamed down my face, and I could see on the others faces that my crying was upsetting them too. In the room where they put me to sleep, there seemed to be a lot of people around me, which was a bit unsettling. Mum and Dad were there holding my hand and Dad of course had thought up a joke to tell me before the anaesthetic kicked in. We have a running joke about a small man having miniature things (it’s hard to explain) so I won’t go into it; the important thing is that it made me smile (and also roll me eyes at Dad’s silliness) before the anaesthetic took me. The operation took place mid February 2013. I don’t remember anything else until my recovery in ICU. I wasn’t able to lift my neck, or eat because they had to move my throat out of the way to get to the tumour. I had expected them to go in at the back of my neck, but the diseased vertebrae was at the front of my spine. I now have a scare on the front of my neck. Mum kept on buying me Costa coolers to refresh my dry mouth and also so that I could drink laying down by using the straw. The nurses had to help me wash, which you think you’d find embarrassing at 18, but when you’re doped up to high heaven you really don’t care. The nurses became fond of me; they couldn’t believe what I was going through at such a young age and since then, when they work overtime, they ask to work on c9- the TCT ward. At night I could hear an old lady, who had been in a car accident, shouting. She was confused and didn’t know where she was, it was really sad. Most of the people in ICU where there because they were in a major accident. I was most probably the only one that had a planned op. The operation was successful at stabilising my neck; it was so lucky that Dr Laing was there to do the op two weeks early, because the bone had nearly completely disintegrated. The Cancer had literally eaten it away! I don’t like to think about what would have happened if I hadn’t had the surgery when I did. This makes me think that someone is up there helping me, wanting me to carry on living. However, then I get given more and more hardship to go through. It doesn’t make any sense.

Once I was well enough, I was able to go back up to C9. Even though I’d just had a major operation, the pain was actually much less than before. I still struggled swallowing, but I wouldn’t have thought I had a metal plate in my neck, it felt completely normal. Friends and family came to visit me in the duration I was there and having the Social Zone on the ward was/is brilliant because sometimes I could forget where I was/am. It was nearly time for the surprise 21st Birthday get together, revealing Ryan’s surprise trip to New York, (the whole family had put in money) and I was desperate to be out of hospital in time for it. Mum and I got some decorations for his card, from the craft room, so that when he looked inside the card it would be obvious what his present was. I can’t remember how long I was in hospital for, but I did get discharged in time for the surprise. It was when I was home and wearing my leg that I realised how sore my hip was, from where they had removed some bone, and it was a painful struggle to walk. It was strange because my hip hurt a lot more than my neck did.

 

Lucy, Liam & I in the social zone on C9

Lucy, Liam & I in the social zone on C9

On the evening of the surprise, Ryan was told by his girlfriend (now fiancé) and her parents that they were going to Hubs Place (a restaurant/bar in the town we live in) for dinner. He had no idea that the whole family, and some of his friends would be there, so his face when he arrived and realised was just brilliant. However, nothing will beat the look on his face when he opened his main card and saw NEW YORK written down the middle.

Ryan's reaction when he found out we were sending him to New York.I love this photo

Ryan’s reaction when he found out we were sending him to New York.I love this photo

 

 

From Good to Bad

So I’m swapping it around a bit and going from good to bad this time, unfortunately!

Summer 2012 finished and it was time to start my final year of A Levels. Ignoring that, November came and it was of course my 18th Birthday!!!!My lovely parents organised a party for me and all of my family and friends. I had the best surprise when my ‘amputee friends’ Gemma and Glyn arrived with their partners. I had no idea they were coming. I hadn’t invited them as I didn’t want them to feel they had to come all the way to Peterborough just for one night. Then I saw this glowing leg coming down the stairs, and thought that it can’t be anyone but Gemma! I did cry as I was so touched that they came. My Mum planned this lovely idea where 18 of the most important men in my life present me with a rose. It started off with my Dad and I thought ‘Aww we are having a father-daughter dance’, and then my Stepdad steps in and I’m like ‘hold up, is this meant to happen?’ and when the next male steps in with a rose, I start to realise what’s going on. My uncle Artie, Uncle Mic, Uncle Steve, my cousins Steven, Karl, Lee, Scott, Chris and Adam step in and Liam is in there too as my special wee lad amongst a few others, and they finish with my brother, Ryan. This became rather emotional. I quote Ryan saying something along the lines of: ‘I’ve kept it in all this time and been a rock for you and now it’s all coming out’. (I don’t think the alcohol helped either). It is true though, he didn’t show his emotions through everything as he wanted to be strong for Mum and I, and it couldn’t have been easy.

My main men

My main men

Me looking very classy with my first legal drink bought by thee Lucy Cawthorne

Me looking very classy with my first legal drink bought by thee Lucy Cawthorne

 

I think from my 18th onwards my confidence really started to grow again. I was going out clubbing with friends, which I thought I’d never do because of my leg, and I started to wear clothes that I wanted to wear again, rather than try to hide myself. I was enjoying life like an 18 year old should.

A month or so later I was standing in the common room and I simply just fell over. I’m not quite sure how, as I was stood still, but it happened and quite embarrassingly so since I was on my own. A kind boy in the year below called Michael helped me up and helped me laugh off my embarrassment. When I later told Mum about it, she asked if I’d hurt myself and I replied no, however, then realised that my neck actually hurt a bit. This was all forgotten until 21st December (I remember cause it was Lucy C’s 18th) when I was shopping for a top with Liam. When trying one on, I pulled my neck. It really did hurt and I panicked at first, saying to Liam that I think he might need to call my Mum. I then worried about how I’d go out that evening especially as I was feeling unwell anyway, and the pain then went away. It was again forgotten about by the evening when us girls were partying away.

I must have complained about my neck hurting in the weeks following as I remember my Dad reassuring me that when you pull your neck it does cause a bad pain. Over the holiday period I went for a few nights out and was under the weather for most of them, although it didn’t stop me having a great time. Christmas came and I spent it with family and extended family- the Macintosh’s. We all had a great day at my auntie Lisa’s house, which was formally my Nan’s, and felt it was sentimental to spend Christmas there. We had a bit of cross dressing going on in the evening when the men got a little too drunk. This was obviously a bit odd, but we all just went with it. Boxing day I spent with Dad’s side of the family and we had a good laugh playing games.

Between Christmas and New Years I had to fit in completing my portfolio to send to Universities to get acceptance on to the course I wanted/want to do- English and Creative Writing. Although I was worried that it wouldn’t be good enough, I quite enjoyed doing it. New Years Eve came and I was looking forward to my first NYE as a legal drinker. I was gutted when I became even more unwell and had to spend it curled up on the sofa. Mum and Mark stayed in to keep me company and Mum ordered a taxi for her best friend, Norva, to come over. We ended up having a lovely night. Norva provided us with much of the evening’s entertainment, singing and prancing around the room.

In January I returned to school and was bombarded with coursework from English and History. Time went by and the pain in my neck began to grow worse and worse. By late January it was agony to be in the car as I felt every little bump and could no longer turn my head to the side to see at junctions without wincing in pain. When trying to lay down, sharp pains rippled through my neck, and the same happened when sitting up again. I was still going clubbing with friends and I think it was the last time I went out in this period of time that someone hugged me and it made me cry because it hurt so much. I stood at the corner of the bar unsure what to do. I didn’t want to go home, so drank enough for the pain to subside a little. By February the pain had become unbearable, so Mum and Dad took me to the doctors. The doctor had said that he will ignore  my history and for us all not to not over react. (Silly man) Up until this point I hadn’t thought it was Cancer, but I was starting to get a very familiar, dull and constant aching pain. The doctor touched my neck in various places asking whether it hurt, it didn’t. He then said that he thought it was just something to do with my muscles and if it carried on he’d prescribe me muscle relaxants. As soon we realised the touching didn’t hurt, it triggered something in our minds as when it was in my leg it also didn’t hurt to touch it. Mum then got Dad to ring my consultant, Helen, to tell her I was in a lot of pain. Knowing that I don’t complain of pain unless it really hurts, Helen told us to go to Addenbrookes the following day, 2nd February 2013, and so we did.

It was originally only going to be Dad who went with me, but then Mum decided to come. I felt a bit embarrassed about turning up with them both because I did want to be making a big deal out of nothing. I left school after break, with my friend Lucy wishing me luck. On the way there I kept imagining having to tell Liam that I was ill again, although I also kept telling myself  that it wouldn’t be anything serious. When we arrived I had an X-ray and after some waiting we were called into the consultation room. Initially they told us that it looked like I had a slipped disc and sent us back into the waiting room to wait for news of a scan. Not long after, we were called back in. Helen told us that the X-ray had been looked at again and she was sorry to say that it was unfortunately Cancer. I looked at Mum and Dad, then back at Helen. I didn’t know how to react; I’m not sure if i cried or not. I said something like: ‘But I’m doing my A Levels, I want to go to Uni’. Helen and Dotchka continued sitting there, trying to comfort us, but I just wanted them to go away and leave me with my Mum and Dad, my rocks. I kept thinking this is not right, this can’t be right. Not again.

I was sent for an MRI scan. They took me into a small room with lockers in for you to put your jewellery and other belongings in, and asked me some questions. They left me waiting in there for a bit and I kept saying,’ You little fucker, I kew you were there.’ (Excuse my language) I hadn’t been angry before, but this time I was fuming! Never had I asked it, but I thought ‘Why me?’ Mum came in, helped me change into a hospital gown and hugged me. This is when I cried and quietly but aggressively said to Mum, ‘Why can’t it just fuck off?!’ I had the MRI scan and for the first time had to go in with my head fully covered. It was horrible and scary, especially as I’d forgotten how noisy the buggers are. They pushed the results through quickly and I was told the tumour was found in my third vertebrae and I was going to have a major operation on my neck. I was given a neck brace and then we went home to digest the news. On the way home Liam rang me as he knew something was wrong. I didn’t want to tell him like this, I wanted to do it in person. He said that he couldn’t wait and needed to know. I had imagined on the way there, having to tell him, but I hadn’t dreamed it’d actually come true. I said it as if I was unfazed by what I was saying; like it was gossip about someone unrelated to me. When I got home I had to make the same phone call to Lucy and Sacha. They cried and I cried too. They said that they didn’t know what to say, and I told them that I didn’t either, I just needed them to be there for me.

I can’t remember going to sleep that night. I can’t remember whether I cried or just fell asleep like any other night. You think you’d remember a night as significant and traumatic as that. Maybe my mind has blocked it out. I think it does that a lot.

Finishing off Summer 2012

In the summer I went on holiday to my auntie Janet and Uncle Steve’s house in Cyprus with friends which was lovely, it was scorching and we had a good laugh. I then finally got to go on the mediterranean cruise for my ‘Make A wish’ present in August. It was fabulous! I chose to take Norva who is Mum’s oldest friend and her daughter Kirsty who is my good friend (we see each other more as family). We flew to Palma and then after a day of sailing arrived in Corsica which is beautiful! When we were in a shop in Corsica (where I bought a pretty ring that I’ve now broken:( in bottom pic) the owners kept looking at me and then finally said in a French accent, ‘Do you know Betty Boop, yes? You look like Betty boop!’. This wasn’t the first time I’d heard that so it was funny that people in a random shop said it too.
Looking out the window to that view was a lovely surprise.ImageCorsica

We then went to Rome, Florence, Barcelona and somewhere in the South of France that I cannot remember. Rome was obviously great and Florence too (it ended up being my favourite place). We didn’t make it on land into Barcelona and instead sun bathed on top deck. In the evenings there was so much to do, with entertainment in the theatre, in different bars and there was also a night club. We had lots of fun. I was very lucky to get it as my ‘Make A wish’. The reason I chose it is because I love pretty skies and views but didn’t want to be in the same place in case it was boring and it was actually my Step mum- Julia who came up with the idea of a cruise.

ImageImageImageImage

I then managed to squeeze in another holiday to Scotland in September with Clic Sargent- Anita who I’ve mentioned before was one of the people that came.  This is where I met my good friends Jess and Ellie (I’d briefly met Ellie before). We seemed to click and all three of us said that we felt like we’d known each other forever. Having that thing that we can relate to seemed to allow us to feel comfortable with each other and get to know each other much quicker than we would with anyone else. We met up again after Scotland for a catchup and have continued to with lots of other members of our ‘hospital friends’. Jack seems to know everyone, so I’ve met Beth, Rosie Jazz and a couple of others through him.

View from our room in Scotland

So as you can tell Summer 2012 was a very action packed time. Despite obvious sad times, it was a good period for me. I probably think it was good because I had my health back, and being healthy is something most of us take for granted until it is taken away.

And a photo of Liam and I having a cheeky hot chocolate

And a photo of Liam and I having a cheeky hot chocolate

From Bad To Good

After my Birthday I did eventually start Chemo again on the dreaded ward. We’d had a discussion with my consultant who was now Helen Hatcher (and still is). When I first met her I was a bit unsure as I still wanted my old consultant. Now I know Helen, if I had to chose a consultant it would be her. She is so understanding as she has been through Cancer herself, and is extremely dedicated to her work. She is a Sarcoma specialist, and sadly there are many different types of Sarcoma, so she is a very busy lady. I’d also like to mention that she has done the Iron Man- amazing woman! Sarcoma’s are rare Cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues. They are the only type of Cancer that can start and reappear in any part of the body and usually occur in Children/ Teenagers. I think of it as a sneaky Cancer as you can’t predict where it is going to go next. Blood has to flow through bones, muscles etc so Sarcoma’s tend to have high relapse rates as Cancer cells escape into the blood and travel to different parts of the body. We had a discussion with Helen about how many more cycles of Chemo I’d have to have and spoke about how well the operation went. I also asked that because the Cancer had come back once, was it likely that it would come back again? She replied that it was quite likely, but you can never tell. At the time I was initially worried but afterwards didn’t think much of it until now. Again, I never dreamed that it’d come back. I thought that surely having it twice was enough for a couple of lifetimes.

Chemo went on a little longer than planned, as a couple of extra cycles were added in. This itself wasn’t nice news to hear as I just wanted it to be over. You become so fed up of feeling ill and tired all the time. Even when you feel ‘better’ you still don’t feel good. I always used to say to Dad that my feeling well is probably equivalent to what he thinks is feeling ill.

The aim was to get it over with before Christmas, and luckily I finished my last 3- day session a couple of days before. I was determined to feel better in time and when Mum asked me what I wanted for Christmas, without sounding cheesy, I said that the best present would be to feel well. I am happy to say that I did feel relatively well on the day. We went to my Auntie Maria’s (Mum’s sister) and it was a lovely day. I then spent boxing day with my Dad round my Auntie Janet and Uncle Steve’s. It was a happy Christmas because everything was over. However, we didn’t make emphasis on me getting through it and find it a big relief like the first time. We just got on with things. I think it felt like we were playing with fire if we celebrated it too much.

For a few months Anita (my Clic Sargent worker) had been telling me about a weekend away at Centre Parks with the Teenage Cancer Trust. She said that it is a brilliant weekend where you get to meet other young people who are going through or have been through having Cancer. My initial answer was that I was not going. I didn’t know anyone who was going and I thought that just because they have Cancer, it doesn’t mean I’ll like them. I was worried that I wouldn’t click with anyone and would want to go home. In the end I decided to go but asked that my Dad pick me up a day early. That weekend, in february, at FYSOT- Find Your Sense Of Tumour ended up being a great turning point for me. I immediately felt comfortable with the people I went with- Vicky, Jack, Jon, Jason etcetera and many of us have now become very good friends. I felt like I was truly myself for the first time in a very long time. We could talk about hospital and Cancer freely without it being an issue and I was able to joke and have banter like I did before. I remember staying up chatting with Vicky until 4 in the morning and that’s when I decided to tell Dad not to bother picking me up a day early, I wanted to stay.ImageVicky & I.

We had to get up early every morning for the conference, but that didn’t matter because the talks were so interesting and some very helpful. I remember one talk was about ‘ Survivors Guilt’ and I didn’t realise that there was actually a name for what I’d been feeling and that others felt the same way. When my friend Jess passed away when I was on the Children’s ward, I felt so guilty that I was the one who had survived and this talk helped me in some way. There were also other eye openers like the fact nearly the whole room of (200-300) teenagers had been misdiagnosed by their GP and the panel of consultants did bash the poor GP a bit, but we were very glad of it! I also met a girl from a different hospital who has the same Cancer as me and is also an amputee. I walked around the place, amongst hundreds of others with Cancer feeling proud, rather than embarrassed by the way I walked. Before then I hadn’t wanted much to do with getting involved with other aspects of Cancer but this weekend was great and it showed me that speaking to others that have gone through the same or similar things really helps. Since then my friendship group of ‘hospital friends’ has sadly lost members, although it has also grown. It is sad that there are so many of us that have Cancer, and it is unspeakably devastating when we lose a friend, but it is great that we are able to support each other and it is lovely that we have become so close.

ImageImageJon & Jack

The family was hit with a blow inn April when my Nono passed away, he’d been struggling for a long time so it was probably best for him to be put as ease, but of course was still sad. There was another blow in July when my Nan then sadly also passed away. This was more of a shock, we wanted more time with her to do things that she couldn’t have done with Nono being there. Both funeral days were of course horrible and very emotional, especially for my Mum and her siblings losing both parents. The only good thing that came out of it is that all of the family got together, we shared lots of memories and made each other laugh. It is always lovely knowing that you can rely on family to support each other at times like this.

ImageAll the cousins together.

Now that Chemo had finished, I was again excited for my hair to grow back. It did take until early February to get going but it got there in the end. I continued to wear my wig until it was at a length I felt comfortable with. I kept on saying to Mum that I didn’t suit short hair like I did before and that I looked horrible, but It does get to a point when you’re just fed up of wearing a wig. It was May 2012 when I stopped wearing my wig and I ending up loving it. When I look back at pictures now, I wish that I could look like that again.

ImageLuce and I at friends 16thImage

It wasn’t hard fitting back into normal life again like before. After the Christmas holidays, I went back to school and straight away had to do full on cramming and revising for my first AS Chemistry exam. I’m not sure how I did it but I managed to get a C which my teachers were pretty impressed by considering I’d missed nearly all the work. To be honest I don’t think I really understood the work completely, I just have a good memory and memorised the equations and etcetera rather than actually working them out. I then caught up with Coursework and work from English and History.

I’m think that sometimes the past seems better than it actually was, but I know that I was really happy with life. After all the odds I did well in my AS exams, getting BBC and although I got majorly stressed out, I didn’t let it stop me having a social life and I’m glad of that. My 3-monthly alternating Chest scans and x-rays continued to be clear and my drives to hospital not knowing whether it was going to be the best or worst day of my life ended happy. I always went to Clinic thinking that I wasn’t too worried, although really I was. I was subconsciously protecting myself and when the tears of relief came it showed me how tense and scared I’d actually been. We usually went somewhere for lunch for a little celebration; they were good days.

ImageCelebrating good news with afternoon tea:)