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 :)

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) 

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. 

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 

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. 

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. 

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.