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Sunday 22 October 2017

Advice For Scans

I always feel anxious before MRIs  and even though I’ve had plenty of scans now, I still feel the same every time, I’m hoping that this post will help anyone feeling the same. Before a scan, my Mum and I always feel anxious, I guess you could say it’s the fear of the unknown as we worry about the possible outcomes of the scan, but we get through it together. 

Tips: 

These are a few things I have thought of that always help me with anxiety (or scanxiety) before/during a scan

  • Support from someone- I always need someone with me because of my mobility anyway, but having someone there does help. My Mum is always with me, and usually one of my Mums friends will come with us as they know Mum needs the support too. When you know that you’ll have someone with you before, during and after a scan it makes it so much easier. The staff are all lovely and supportive at the hospital I go to, so they’re very helpful also. 
  • Listen to music- In every MRI, I listen to music. Music has always been there for me and has been a great help during this journey, I take a CD to listen to or I ask them to connect my phone as they have special headphones to wear in the MRI. I find it really helpful to close my eyes and sone out to the music, the machine is very noisy though so is a little annoying but you can always ask for the music to be turned up. 
  • Something else I always do, is take something to have with me, for example-I take my own blanket to have over me in the scanner, and it helps to comfort me and keep me warm. I also take my mini cardboard cutout of Justin Bieber, and lay it on the table with me or stand it up on something so I can see him, this may sound crazy but it is helpful as it’s something from home and is comforting, For others who aren’t as crazy as me, I’d suggest taking something like a teddy, or wearing fluffy socks to comfort you. 
  • Mindfulness- this really helps when I’m feeling stressed. There are many different mindfulness exercises, but one that can be helpful during a scan is concentrating on your breathing-I count my breaths or think of a balloon resembling each breath, as I breathe in I imagine the balloon filling up with air and then as I breathe out, all the air is being let out of the balloon. It’s helpful to focus on something that will take your mind off your worries. 

Thankyou to anyone who has took the time to read this post, It might not be helpful for everyone but if I can help even just one person then it’s been worthwhile. 






Thursday 28 September 2017

Moving Forward

It's been a while since I've written a post as I have been so busy so this is going to be short, 
I called this post 'moving forward' because I've found that since being  diagnosed I feel like a lot of things stopped for me, for example, I was unable to carry on with sixth form due to the treatment that I needed but I am now  studying TV & Film/Media & Journalism at a new college. Recently a lot of my friends have been busy going to uni and things which I should've been doing, so having something for me to focus on has made me feel like I'm moving forward, and getting some normality back. I'm still going to try and carry on with this  blog whilst studying, I might struggle posting  often but I want to carry on with it  as I started it to help more people know the correct information  and to hopefully offer help and support to other people  going through similar situations.








Saturday 13 May 2017

How Cancer Has Changed Me



Over the past few weeks I've been having a bit of a rough time but I don't want to sit and complain about everything so I might try to write some separate blog posts about some of the things that have happened, but this post is all about me trying to fuel my pain/upset from this rough patch of my journey into something positive, although this experience is rubbish (insert rude words as appropriate) and I've had the toughest time going through it, I'm going to try and make this situation turn me into a better person, I have learnt so many things from being diagnosed with cancer and I want to use them to my advantage to turn me into a better person with a better outlook on life (or turn me into the perfect wife for Justin Bieber) I'm starting this by thanking and apologising to my friends and family, the people I've met along this journey(doctors, nurses, all people involved with the medical stuff, I've met celebs but can't really say this to them lol) thankyou so much for being by my side and for supporting me and looking after me so well, there have been times after diagnosis when I have been angry and I still probably take stuff out on you when I'm having a bad day, but you are the people who get me through each day, you look after me so well and my friends especially you cheer me up with your texts and with coming to visit me and wanting to spend time with me (even though I know  I can be  annoying), so thankyou for being here, I'm always here for you too. 

I have learned so many things from my experience with cancer,  another one is that you shouldn't waste time worrying about silly things (idk something like spilling a drink on your favourite top) the time you spend worrying over trivial things like that is useless because you can't change it, I think it's a natural thing for us to do and I try now not to but it's quite hard, there's times when I find myself thinking I'm sick of this now, I hate cancer,  why did this happen to me?, what did I do wrong?, but I know I can't change it however much I want to, I might be Queen Bieber but I can't take my cancer away, So I'm trying my hardest not to worry about trivial things (although tbh I'll probably still complain when my phone needs charging) 

another of the many things I'm trying to change about myself is to appreciate everything in life, even the smallest things because if you put them all together they're all one big thing, For example- I shouldn't take for granted living in a lovely area with the people I live with, because there are people in this world who are underprivileged, when I'm better I'm going to make it a goal to help people & animals but for now all I can do is just appreciate what I do have at the moment because even though cancer has taken things from me, I still have a lot more than other people.

I'm going to make this the last thing then stop rambling, cancer has taught me that I'm stronger than I think and even the most  horrible situations can't bring you down and stop you  if you don't let them, my cancer has taken so much from me, a few being my ability to use the left side of my body, nerve damage to my voice, missed out on finishing my first year A-Level exams and spending time with my fab friends at college but I have not and will not let it take my positivity and determination to beat this cruel disease, I take each day as it comes and just get through them because that's all I can do, and I have bad days but occasionally I do have good days, I just have  to persevere

I hope that anyone who reads this post can take  something from it, I want to turn my situation around to help others and to explain a bit more about cancer, thank you for reading.

Monday 24 April 2017

Chemo 2.0

I'm going to be starting some more chemo which will help to attack the small new part in my brain and hopefully will help to kill the one in my spine too. This chemo is different to the last one I had (temozolomide) it's 3 different chemotherapy's together and it's called PCV. I will get my bloods checked on to see what my platelets are like to check if it is okay for me to have the chemotherapy, this is what the chemo is: 

•Procarbizine, CCNU(lomustine) & Vincristine

Each cycle of this is 6 weeks, on the first day I'll have Vincristine (intravenous) & Lomustine(4 tablets that I take on the day with the Lomustine) then the following day I'll start a 10 day course of Procarbizine tablets(which is 3 tablets a day). When that finishes I'll have no more treatment until the 6 weeks is over then I'll start the cycle again. There are obviously side effects to this medication, I'm most worried about the fatigue and losing my hair and also having aches & pains from the drugs as I don't want this to interfere with my physio because what affects me the most is having my independence taken away from me and not being able to walk/use my left arm so I'm determined to get it back, but with tiredness and aching from drugs this can be hard for me  to keep working so hard. Also, my hair is still growing back from my last lot of treatment and I'm concerned that I'll lose it all again after I just started to feel better about my hair because it was growing back. There are many other side effects but I'm not an expert so I've just mentioned a couple that I know already. I hate that these drugs are supposed to make you better but actually they can make you feel worse, although I know I just have to deal with it & get on with it otherwise I'm never going to beat this cruel disease. 

My advice to anyone who is starting cancer treatment  and anyone who is worried about the treatment & its side effects is to make sure although you still want to get on with everything ( like me with my physio) you have to give yourself time to rest and be kind to yourself. Make sure you have plenty of rest & also to keep your spirits up don't let the treatment stop you from doing things that make you happy. For me this is things like singing & seeing my friends; the treatment is rubbish but if you give yourself time to rest then it won't stop you from doing the things that you love and that make you happy. 

Saturday 8 April 2017

Relapse

After my most recent MRI scan, we were told I had relapsed. There was a new spot in a different area of my brain that could be a bit that's broken off but we don't know, because of this, my consultant wanted to do a scan on my spine  to check, there was a tiny spot on my spine also so more treatment is needed now. I will start radiotherapy urgently and more chemo will be needed. The radiotherapy will be to my spine to attack that small spot before it has chance to cause any problems. This is a bit of a shock but it's nothing I haven't done before and it just means that I get to jam to my fave artists in radiotherapy again. 

Relapse is a word that a cancer patient doesn't really want to hear, but if there is anyone reading this who is going through a similar situation, I will put a few tips at the end that helped me when I was told this and things that always help me if I'm worried, some are my own strategies and others are Ones that my psychologist has taught me.

Before that, I want to just say thankyou to everyone at the hospital that was with us yesterday, I don't think any of us expected it but you were all there with us and you got us through, Thank you.

Tips:

Worry cars- try to visualise your worries as cars driving by, if you were stood on the side of the road, you wouldn't go and get into a random car, so don't choose a random worry to consume you, just let it drive by like a car. 
Mindfulness- there are many different types of mindfulness but there are lots of apps and things online that give you mindfulness exercises to do
Distractions- this is probably the main thing that helps me, having things to distract me. This can be focusing on things that you love such as listening to your favourite music or watching your fave tv show, or just arranging a night with some friends to take your mind off everything else that's going on.


Hope this helps someone :)

Tuesday 28 March 2017

Medication

Something that I've never really talked about is the different medication that I have needed/still need. Obviously there's the treatment (which for me was both radio and chemotherapy) but there's a lot more as you may need medication to help with the side effects of treatment, I'll talk about a few different medications that I have had,


  • Anti-sickness(ondansetron & metaclopramide) - this helped with the sickness I felt from treatment, sometimes I just felt so sick but these tablets usually helped with that.
  • Bowel control-(docusate, bisacodol&suppositories) -chemotherapy can affect your bowels and these help with that problem(I'd rather not go in to a lot of detail about that haha) 
  • Painkillers- I'm not really on painkillers regularly but we have some there if I do need them, I take painkillers for when I'm aching in my wheelchair or if I feel a bit ill or have a headache, ones I've had before/still have are paracetamol, oxynorm, diclofenac and after surgery I did have codeine but ive not had that really, I take painkillers for when I'm aching in my wheelchair or if I feel a bit ill or have a headache
  • Septrin (prophylactic antibiotic) I have this two days a week to help fight infections, although this week I am unwell so it mustn't have worked that well!
  • Gabapentin(this is for nerve pain but I no longer take this)
  • Norethisterone(I used to take this when I was still having chemo to stop my periods but now I have finished chemo I am off them-which I hate(gosh boys have it so easy lol) 

Wednesday 15 March 2017

One year on...

today (15th march)  is one year since I was diagnosed and march 21st will be one year since surgery, to be honest this past year has been horrible (excluding some things) but looking back from where I was this time last year helps me to see how far I've come since last year, for example, when I came out of surgery I couldn't even sit up and now because I've been working so hard with physio I can do a lot more than that, obviously I still want to reach my main goals of walking and using my left arm again and that's something I'm trying to achieve now and working towards, but seeing how far I've come since last year shows me that I'm making so much progress and helps me feel a bit more positive about my physio, because this is a very slow process but looking back shows me that I will eventually get there it just takes time and a lot of hard work, my life was very constant before all of this, I went to college everyday and saw my friends everyday and then suddenly it all changed;I never anticipated my life to turn around the way it did but from the beginning I've been determined not to let it get me down,I think that's the most important thing to do in situations like this, it will only get you down if you let it  so you have to fight against that and keep positive however hard it may be. 

Wednesday 8 March 2017

18th birthday

On  24th February 2017, I turned 18, I spent my 18th very differently to how I expected and I'm unable to do so many things that I would've wanted to do, however  I'm going to try to not get upset over this, I have to look on the positive side because being negative won't help me, through this journey I have found out who my real friends are and made some great new friends through the Teenage Cancer Trust so I spent my birthday with fab people who I know will always be there for me, although my birthday was different to how I had imagined it, I still had a great day and being with these people  reminded me that through this hard time I'm still surrounded by happiness,  my Mum is amazing, she never  fails to make me happy and she put so much effort into making my birthday special as she knew how hard this day was for me, everything was perfect and I had so much fun despite being unable to dance etc, hopefully this shows anyone in a position similar to mine that whatever you're going through and can/can't do, nothing is impossible and you can always find a way around things 

Sunday 12 February 2017

Goals for the future

This post is just about what my goals are for the future for example,  the biggest and most important goal to me is to get my mobility back, it's not that simple though and this is going to be a long and tough journey,  but I know that the energy that I would use on being upset about not being able to do stuff, I can use towards the energy of working towards my goals. Most of my goals are all physio related like to be able to do things more independently and get my mobility back is something that I'm really working towards but I do have a few other goals also, such as I want to regain my singing voice, my voice was affected with nerve damage from the surgery and I now struggle to hit certain notes, I find the lower notes easier than the higher so a goal is to regain my voice and be able to hit a wide range of notes as singing is something I'm passionate about. I think it's been good for me to set myself a goal as then it gives me something to focus on instead of getting caught up in all the horrible thoughts such as "I can't walk", "I want to walk", "my singing sounds weird", I can focus on achieving the goals rather than getting upset. I wanted to write about this to  kind of show people that even though you might have a goal that seems too hard, don't let yourself get upset because that energy should be used to concentrate on achieving the goal rather than getting upset about it. 

Tuesday 31 January 2017

Tiredness

Because I've finished all treatments, I think that people think the tiredness just disappears, however the effects from treatments can last  a while after you've finished. The tiredness is one of the worst effects because it really is indescribable, you just can't say how it makes you feel like it's rubbish but more than that, I've always tried to fight the tiredness but I've learned that's not the best thing to do because you get to a point where it consumes you, every day is different as some days I could just be too tired and feel that I don't have the energy to do anything, it's not just the tiredness from treatments I get it's all the physical work I have to do because of the stroke effects, even something as simple as going to the toilet feels like work because getting on and off the toilet/commode  is hard when you have limited mobility. I think it's hard to understand these effects unless you actually go through it yourself,  I wish that there was an easier way to describe the feeling that it gives you rather than just tired or rubbish because it's much more than that. 

Tuesday 10 January 2017

MRI scan

On January 6th it was my first MRI scan since finishing chemo, I was feeling a mixture of nervous/worried/anxious&scared because you just don't know what's going to happen or what the outcome will be. I thought I'd write a post about what it was like  and how I managed to stay calm and hopefully it can help others in a similar situation. My Mums friend came with us on the day who stayed with us on the hospital when I was on the ward, it really helped to have her there because she has already been a big part of this journey and she helped to keep me and Mum calm and was there for us. My hospital family as I call them were there for us too, whether it's talking to me to distract me whilst having my cannula put in, or giving us lots of hugs to keep us chilled, they're always there, before the MRI we went to the oncology day unit and waited there for a while until it was time for our appointment, I had my cannula put in which I hated but people helped to distract me, I saw lots of familiar faces as you get to know everyone and it was nice to see them and catch up with them, they always ask about my physio and what else I have been up to, when it was time, we rolled over to the MRI department and then went in for my scan, I have to stand and step round to get onto the MRI bed and then have to get my head and shoulders in the right position, they put headphones on me (I was listening to the Kaiser Chiefs during this scan and was enjoying it too much that I got told off for moving because I was dancing) and then I go into the machine, the music helps to relax me and also my Mum always sits and holds my feet so that's comforting, it's very hard to hear the music properly because of how loud the machine is but I just try to zone the noise out and focus on the music. I'm in the machine for a little while and then they come and inject the dye into my cannula, then after I'm in for another little while and then it is over, when we were done there we had some  food as I was complaining of being hungry lol, then we went back up to the day unit where my consultant had the results, we're showed the scan on a computer and it's quite scary to  look at, , we were showed my last scan compared to my scan from that day, the tumour was looking significantly smaller which was great because it showed the treatment had worked, my consultant has always said to me that my scans will never look normal and he said remember what I always say, because of the bleeding and stuff from surgery my scan will never be clear or look normal. After talking with the nurses and doctors about my scan and seeing the results  I felt very relieved, now I can just see what happens at the next scan in a few months and focus my energy on physio instead of worrying.