Pain pain go away, come again never

I've just had the most horrendous migraine but it seems to be getting better now after 4 hours resting in a dark room. 

I seem to get all the 'rare' invisible side effects of meds and cancer treatment so the pain and discomfort is largely unseen. If people knew about my bad times I think they would be so shocked at how I can go for spells where I seem to be relatively ok with a smile on my face. 

Next time I'm out I'll get the usual 'you're looking well', and I'll just smile and say thanks as I usually do. The reason I am so happy when I feel relatively good is because the bad times are and have been really bad. At this very moment I feel very happy because I'm relieved the pain is subsiding, it was terrifying. 

If you see me out you will know it's a relatively good day because I simply don't go out at all when it's not. I get migraines often and my neurologist, oncologist, GP, and even the ENT specialist (it affects these areas too) say there isn't much I can do about this. My last scan was stable and the blob of whatever it is only measured about 12mm so these migraines I've suffered with for a year and a half could be anything. 

Lack of posts

I apologise for the lack of posts recently, to be honest I had a lot of times where I was thinking very negatively and I wanted to wait until I was mentally in the right place to continue to post about my experiences. I also don't think I'm that interesting most of the time but I hope it helps some people to read this. As you can see by my last post I had an 'interesting' partial seizure earlier and now I'm in bed feeling quite tired all of a sudden. Last week I went away with an amazing, inspiring group of other cancer patients in Bournemouth thanks to Youth Cancer Trust and it taught me a lot. I was also very lucky with the timing because I seemed to have more energy than usual. I'm guessing some of that may have been a change of scenery and the excitement of meeting others that were not only lovely people but also people I could really relate to. I miss them already but hope to see them again sooner rather than later. 

Today

I had a strange simple partial seizure earlier when out but after seeing my neurologist I'm pretty sure it's because I've been pushing myself too much and doing new things. I couldn't feel half my face, had strong pins and needles in my tongue, and felt like I was floating. It was concerning at the time but on reflection it could be so much worse and I'm glad it didn't develop into something worse. I'm encouraged so much by last week that I can cope with this. My neurologist is very happy, I just need to rest more. 

The only reason I'm sharing this is because some of my friends might be able to relate to it and others can understand better. I get simple partial seizures every day but this one was unusual for me and interesting. I've learned my true limits which is actually a positive thing although I would love to be in the sun right now! 

Fundraising for me, you, or the collective good?

I like the idea of having a Justgiving page so that you can see how much money is raised for a specific cause but there are a few things I question about fundraising:

1. Should I really need to do a 'challenge'? I would prefer to fundraise by educating and provoking thought and discussion. I prefer to provide information and will make videos in the near future. I have nothing against people who do challenges but it should not be seen as a pre-requisite. The challenge for me personally is to influence thought and actions with words.

It appears many people want something in return for their money to benefit themselves or they want to be some type of voyeur who can visibly see someone suffering. The more suffering someone is experiencing in the public eye the more they give. The achievement should be influencing positive change. It sounds boring but it's true. I'm not a flashy, charismatic person but I speak my mind and I have strong opinions which I have thought about for a long time. I have many weaknesses but I would like to try and play to my strengths which I am aware may make me unpopular to some.

2. Do we really need celebrities and people in the public eye to influence people to give money? Again, I would like to try and do this by having the opportunity to speak and giving to causes where people know what the money is being used for. I actually find the power of celebrity quite disturbing. I will set up a text number because many people are inherently lazy. 

3. For me fundraising should have the end goal of letting people know where money is going and specifically how people are going to benefit. I dislike how fundraising can become like a competition where the cause is almost forgotten about. I would urge people to raise for the cause, not the competition. Sometimes I see ugly things in humanity when it comes to raising money for good causes which is quite ironic. 

This is actually a positive post because like I always say I enjoy provoking thought and discussion. The great thing about human beings is that we are capable of individual thought and we have the ability to change how we think providing we are not stubborn. 

Ups, downs, and boredom looking at the rain

I successfully halved my dose of Epilim on Thursday. I've been doing this slowly and cautiously over the space of a few weeks and hope to stay on just Keppra eventually because it has less side effects for me. This could have potential risks as I continue to reduce the dose but I go with how my body feels. I've had some bad days this week with fatigue and I still get the usual problems with headaches and dizziness but I feel like I'm looking after myself. I get very down sometimes but it usually passes. 

I'm starting to get very bored of a few thoughts on my mind that won't go away about the future and some personal things but I'm looking forward to less hospital visits after deciding to stop chemotherapy. 

Valentine's Day has also made me think again about something I last had been trying not to think about since I went to the Andrology unit before I started chemotherapy. That was a very strange experience (no romance there!). I'm at the age when you normally start to think about serious relationships but there are so many uncertainties now. I'm not really  a fan of Valentine's Day, it just made me think more. Definitely a lot more than normal.

There is a huge part of me that wants to forget about my condition but my symptoms, circumstances, and the fact I need to continue to go to hospital means that I can't. I feel like I'm in a prison because I can't fully let go of negative thoughts and I'm restricted with what I can do. Even short walks still make me exhausted. I could cope at first but it seems like a long time now. It's about a year ago today when I really started to feel my crushing headaches strongly and started to take paracetamol and sleeping pills thinking it was just stress. 

I got some very strange symptoms last night down my right side and in my head because I stayed up a bit later than I normally do. I won't be doing that again, having to be boring and avoid triggers is tedious but worth it. My tinnitus has improved a lot which is good news.

I know a lot of things could get better with time but when you also know it could get worse with time it's hard to be patient. I'll try as I always do. I envy people who's day is ruined by small inconveniences like the weather or simply having a bad day at work. 

More steps forward

I seem to be adapting very well now to my decrease in Epilim which is encouraging news. I still have lots of headaches and get tired and dizzy but I feel very little seizure activity. I was able to have a little walk today for a few minutes which was nice (sunny but windy!)

It was also a great privilege to talk at The Brain Tumour Charity Grantholders Day on Wednesday and to hear from the impressive, forward thinking researchers who attended. No money given to The Brain Tumour Charity is wasted and I continue to be amazed by their tireless effort to direct funds on progressive research. I felt very honoured to be invited and I hope to do as much as I can in future. 

Below is a picture of a live tweet from the evening of me discussing my personal experience of diagnosis and what I believe future research should be focused on. I hope to give more talks in future if asked. Stephen Sutton has been a huge inspiration for me to take positive action in this way and although he has so much going on he's always incredibly positive and philosophical. If you're reading this thank you Stephen. 

                              

Positive day

I keep getting reminders that every day can be very different. Spending the weekend resting and doing very little helped to settle my head and I feel much less tired today. Everyone who has any kind of brain trauma quickly becomes aware that how you sleep, how you eat, stress, every day makes such a difference to how you cope with symptoms. 

Sometimes I get very down on my bad days but when I realise where I've come from I get very encouraged by where I am now. When I have a good day I'm tempted to do too much but sometimes I feel like its worth it. It can take at least a year to recover from some of the side effects of radiotherapy on its own, let alone everything else! If you have radiotherapy to the brain you are aging brain cells so in the long term things get worse and this is a controversial topic but hopefully the benefits really do outweigh the risks if the person gets to this stage. 

After radiotherapy I was incredibly exhausted, especially since I was never on steroids (this is a good thing but very tiring!) Physically my first goal was to take a few steps down my hallway at home and now I can walk very confidently despite being quite dizzy and tired. Most people can't see this but I've kind of gotten used to it unless it becomes too much. It feels kind of like being hungover all the time! Today I did light exercise in the gym and I'm getting more confident in this environment even though there is a lot going on around me. I go to a class which was set up for young people who have had stroke and I'm very thankful for someone who I now regard as a really good friend from it. Having people around me who understand helps hugely because other people just go at too fast a pace now. I'm very good at hiding how I feel on my good days but then I get exhausted just by the effort to seem normal!

Today I managed 10 minutes on the exercise bike and 2 minutes (I felt too dizzy) on the rowing machine but I feel fortunate. This sounds like nothing to most but to me it's huge. Even though I can't run or do any weight bearing exercise yet I feel very fortunate to be able to do what I can. I'm also happy that my hair is growing back now from the radiotherapy. Small things make big differences and sadly there are other people with malignant brain tumours who are doing a lot worse than I am and who have permanent neurological deficits. This might not be the most light hearted blog to read and I'm being very serious but I hope people can learn from it. Even though the future is uncertain I'm lucky to be here and I'm lucky to be feeling more like myself. I have decided to have 2 more cycles of chemotherapy before stopping my treatment. It's difficult having to make these big decisions myself but I think it's the right one.

I thought I'd share a few pictures of my story to show how far I've come so far.

My tumour- PXA with anaplastic features (grade 3), diagnosed for treatment as Anaplastic Astrocytoma (grade 3). The top left picture is from the most recent scan, bottom left is before surgery. 

      

Before the gym today and seeing my hair starting to come through now slowly but surely. I still think I look very sleepy!