5. THE MRI. There is nothing I find more terrifying than laying down with my head locked in position while large magnets circulate around my head for 30 minutes. Last Wednesday I found myself in this exact situation - while I underwent another MRI scan to ensure that Timmy is not doing anything unusual. As I placed my head back into the bed, they put a frame in place to secure my head while the scan took place. As they leave the room my heart rate pounding I could feel myself closing in on itself. Seconds later you the feeling of the bed moving into position brings me into a locked position with a small mirror above to look straight ahead of me. Which does not help, as every time you look up you can see the radiographer's talking to one another and point at various monitor screens. Meanwhile I am laying there listening to the mixed sound of Heat Radio and magnets rotating round my head at speed. Every few minutes the music goes silent and the Radiographer asks, "Are you okay, Chandos?"... Voice full of fear I respond yes. Despite having an MRI every year or two the fear and panic in the lead up to an MRI and the anxiety waiting for results never gets easier. 4. MEDICAL TERMONOLOGY. Growing up and still to this day I get confused by the medical terms things doctors use when talking to me about my tumour and the symptoms I am experiencing. On several occasions I’ve found myself going ‘what’ in my head and panicking that what they are saying is bad, even though they have said it’s fine. And more than often I will go home and Google what they have said…. Now Google is good for some things it is not as useful as you think when you have any medical diagnosis, because you end up feeling more anxious. Over the years I have had several good consultants who’ve done everything they can to support my understanding of my diagnosis and treatment. I found this especially useful during my last operation in 2014 when I was a lot older than my initial diagnosis. Saying this, I’ve also had many consultants who have had little to know understanding of my fear and I have left the hospital feeling worse than I did before. 3. ANXIETY. Anxiety is still a big player in my life and I deal daily with my OCD and day to day worries about getting ill, but some days are better than others. I remember after I got my diagnosis in 2014 my anxiety got increasingly worse and with the lead up to my MRI last week and getting the results back my I’ve found a lot of my old worries come back and my sleep pattern is all over the place now. Anxiety is something I will probably live with forever, but these are my tips for dealing with it… 1) Go for a walk - I find taking an hour out my day to go for a walk while I listen to Spotify on full volume helps me. 2) meditation – at first, I found it useless and did not think it would work but after a while it’s really starting to show purpose in my life. I use an app called Head space and try to take 10 minutes out of my day where I can to meditate and reflect on that day. 3) Every week taking 5 minutes to write down 3 good things that have happened that week really helps as it reminds me of the good things rather than dwelling on the stress and anxiety of life with a brain tumour. 2. HONESTY IS THE BEST POLICY. Being honest with yourself about your own limitations, worries, fears and strengths is the best thing you can do. For ages I found it hard to deal with the fact that my tumour had returned after a 12-year period of not doing anything. But following my operation while I was at university I realised that it’s okay to not be perfect and to not know what tomorrow will bring. I will always remember what happened when I had my last brain operation and the Surgeon asked me if I had any questions and I straight up asked ‘Am I going to die?’ I think this took him by shock a little because I could see the change in his facial expression, but calm and collected he responded with pure honesty saying that the operation had risks but that he would do his best for a successful outcome. I think it’s moments like this that remind me that life is not black or white and having my consultant stand there and be honest about the current situation gave me hope that things would be okay. Although I didn’t know how the operation would plan out at the time part of me going into that operating theatre new it would be fine. 1. LIFE IS NOT SIMPLE Nothing appears to be simple, I wish it was sometimes and in previous blog posts I have said that I have struggled to come to terms with my disability and diagnosis and wished I could wake up and be ‘normal’. But, over the past year I have found out so much about myself and by using my experiences of having a brain tumour I hope to bring others together and help fund a cure. Plus, I have some of the most amazing friends and family who over the past few months have proved to me again that together we can make a difference. In late November with the help of some signed celebrity merchandise and donations – plus a live performance in the iconic Cereal Killer Café in Camden Market we raised over £400 for The Brain Tumour Charity. Money which can help to fund research, support services and much more.
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Dear Mr Hammond,
I write to you as a concern member of the British public and as a young adult with physical and learning disabilities. Earlier this week in evidence you gave to the Commons Treasury Select Committee on the 2017 budget. During this time, you suggested that low productivity measurements may have been influenced by the increase in disabled people, who are in work. Although you appeared to applaud the fact that more people with disabilities ae in work. From an outward perspective of someone who has tried to find a full-time job whilst living with a disability, the comments you made reinforce the perspective that having a disability makes you a ‘burden on society’. As a recent graduate with a degree in Social work, I have witnessed first-hand the difficulties in finding a full time job, and have since decided to create my own job as I have been unsuccessful in finding a job that can be adapted to fit my physical limitations. Through speaking with people at university, my friends and those I have met through volunteering in the community - disabled people should be recognised as should anyone as hardworking, determined and passionate. Having a disability can be difficult and as each day passes I face daily doubts of being good enough. The reality of finding work can be difficult for anyone as I am sure you know. However, this pressure can be even greater for those with a disability. Those living with physical disabilities and learning difficulties may feel pressured into finding a job when their benefits may have seen drastic changes and the strain of his/her condition on daily life can contribute to how they themselves manage with the real-life experiences of having a medical condition. Despite this I know many young people and adults who regardless of their condition go to work each day giving everything they can as do the rest of society. I am aware that with Brexit and the current financial crisis, there are tensions among resources. However, I would ask that you reflect on the comments you made and listen to the people that would have been directly affected by these words. Having a disability does not have an on and off switch and after leaving work. Regardless, people still actively seek work and go above and beyond the expectations of those around them. Disabled people should in no circumstance be marginalised as the reason for a country’s economic growth. Investment is needed to support those with disabilities both in and out of work. The Joseph Rowntree Foundation reported this week that nearly a third of disabled people live in poverty. It is important to recognise that every human being has a direct influence on another and in the words of Robin Williams from the film Patch Adams “you treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome”. I thank you for your time and look forward to hearing from you. Kind regards, Chandos |
AuthorBrain tumour survivor. Ambassador, campaigner and co-founder of #IFightFor Archives
January 2019
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