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.
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.
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.
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.
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.
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.