Category Archives: Brain tumour

What happens when you are diagnosed

Hi there and welcome back to my blog. How are you? I hope you are well. Today I’m going to talk about what happens when you are diagnosed. This is what happened to me.

  1. You will lose friends but make new ones`
  2. You are constantly tired
  3. Your balance is weaker
  4. You will forget everything
  5. Your tastes buds will change
  6. Your eyesight will get worse
  7. Your muscles are weaker

You will lose friends but make new ones
As I spoke about in an earlier blog post, I had lunch with my old best friend from nursery, before I had started radiotherapy. I have not seen or heard from him since. Every year I do like to send him a happy birthday message, one on his facebook and another to him via whatsapp, but I don’t get one back.

The past is behind me and now I have new friends at the Coventry Brain Tumour Support group, the Coventry Macmillans group, Carers Trust, Mercia MS centre (where I go for my hyperbaric oxygen chamber), the Earls of Uke, the Young Brain Tumour charity, the West Midlands Young Shine Cancer group and at Tai Chi.

In fact, here’s a video of me and the rest of The Earls of Uke playing some Christmas songs at this pasts month’s Christmas concert.


You are constantly tired
I wish I knew what part of the brain makes you tired, whether its the whole brain or a certain part. But I’m always tired, I’ve learnt to just deal with it. That and these energy balls that me and my mum make, (but my dad keeps on stealing). This kind of energy are a short burst of energy that I have just before going for a walk or going on the treadmill.They give me a small burst of energy to do the things that I want to do.

Your balance is weaker
As I’ve discussed in an earlier blog post, in the middle of my radiotherapy, as I was going upstairs, I fell down them. Ever since then, I struggle with standing on one leg and counting to ten, Theses excises, that I’ve been doing since physiotherapy at the Myton Hospice has definitely helped me with this.

You will forget everything
Well not everything, only short term memory. Unless, like me, and got a fluid blockage in your brain, then you forget a lot more. Ever since the Hyperbaric Oxygen Chamber, my short term memory has improved ever so slightly.

Your tastes buds will change
Now this one surprised me. Before my diagnosis, I used to eat a lot of spicy food and I would hate aubergines. Now its the other way around. I can’t stand spicy food and I love aubergines. Although, just recently I’ve been slowly adding spices to my everyday meals.

Your eyesight will get worse
Because I had a tumour pushing on the optic nerve, my eyesight, especially my right eye, has gotten worse. I can still drive legally, but the hospital haven’t cleared me to drive yet. Ever since using the Hyperbaric Oxygen Chamber, my eyesight has improved but it doesn’t work for everybody.

Your muscles are weaker
Ever since radiotherapy/my holiday in March, my right side is much weaker than my left side. Once again I don’t know why my right side is weaker than my left side. Considering that I do most things with my right side, I strum my ukulele, with my right hand and I carry most things with my right hand.

And there you go, of course, things might be different for you. You might have amazing friends, your taste buds might not change, you might not get tired at all (I hope), your balance might not get weaker and your memory might not get weaker. But these are the things that happened to me. Yes it’s sad that I get tired and yes it is depressing that I’ve lost my best friend from primary school, but these are the breaks.

Once again, I just want to thank a few people. Firstly, I would like to thank my mum, dad, sister and my Naughty Mamaji, for being by my side, throughout everything. I would like to thank Louise from BTS for sharing this with the community. I would like to thank Kanika, Shirley and everyone at Carers Trust for giving me the confidence to sharing my story and I would like to thank Joe for motivating me to getting back on the horse. And I would like to thank everyone at the hospital, my family and friends and everyone who I’ve met on this journey.

Please feel free to leave a comment and don’t forget, if you buy something from Amazon through the blog, or click on a link, 100% of the money that I get goes to Brain Tumour Support.

The next time I will talk to you, I will talk about in further detail about how I lost weight.

Thanks and I hope to see you soon.

When to admit that I’m improving

Hi there and welcome back to my blog. How are you? I hope that you are well. Today I’m going to talk about, when I admitted that I’m improving. Now I know that it’s hard to admit that. I still get tired on a long walk with my mum and my balance is still weak, but if you look at myself, this time last year, as I’ve done with my weight loss photos, you are better.

Before my diagnosis, I was a front end web developer. Before the hyperbaric oxygen chamber, I would get dizzy spells, in front of the computer. Now I don’t get dizzy spells. And in fact, only last month, I spent over an hour in front of the computer, without taking a break, when I had to redesign the volunteers time table at Carers Trust.

I started volunteering at Carers Trust back in August 2017. If you had told me that a year ago, I would have laughed in your face. Now I’m there twice a week, for about 2 hours. Okay, I take a break, but its a short break and its only for lunch and to take my hydrocortisone tablet.

I starting lifting weights back in January 2018, when the physio at Myton Hospice said that i needed to join a gym. I had originally bought weights back in 2009 when I at a summer break from uni, I was doing P90X workout. I was exercising everyday, for an hour, for 90 days. I was a lot thinner and fitter, but there’s no way that I’m doing that now.

The one thing that I hate about my new life is taking each day as it comes. I like to plan ahead. I like knowing what’s for lunch, right after breakfast. And I like knowing what’s for dinner right after lunch. I partially annoy my mum with this because she’s the exact opposite. She, with her back, can go into the kitchen, spend a couple of hours with some random ingredients and come up with a meal, fit enough to feed myself, herself, my sister and dad for two days.

Apparently, I take after my grandfather. He did the same with my grandmother and mum, I guess its hereditary.

Another thing about my new life, that I hate, is how tired I get. I know that it’s normal for someone to be tired after radiotherapy. And I’m a lot more active now, than my diagnosis, but not that much. When I used to work in Birmingham, I used to run to catch the bus, run to get my train and walk to Digbeth. And I would do the same on the way back home. When I used to work in Leamington Spa, me and a work colleague called Lyle, would go for long walks during our lunch breaks. With both of theses walks, I wouldn’t take a break. If I would do that now, I would take several breaks.

However looking back over theses couple of years and how far I got, I’m constantly surprising myself. I was able to write my blog on paper and on computer, which is promising for me to go back to work, i was able to play the ukulele in front of friends and family ( which I never did before my diagnosis) and I’m walking over 10,000 steps a day (once again, I didn’t do that before my diagnosis).

I’ve also joined a ukulele group called the Earls of Uke. We meet up every other Tuesday and sometimes we like to showcase in public and private concerts. Once again, something that I didn’t do before my diagnosis.

I’m always joking with my mum and sister, about me getting better. I would make rude jokes in front of them and then I would say, “You know that I’m getting better when I can give myself eye drops and make rude jokes.”. I’ve been able to give myself eye drops at least once for over 200 days in a row and slowly making being able to give it to myself 3 times a day.

Well that’s it. Once again, I just want to thank a few people. Firstly, I would like to thank my mum, dad, sister and my Naughty Mamaji, for being by my side, throughout everything. I would like to thank Louise from BTS for sharing this with the community. I would like to thank Kanika, Shirley and everyone at Carers Trust for giving me the confidence to sharing my story and I would like to thank Joe for motivating me to getting back on the horse. And I would like to thank everyone at the hospital, my family and friends and everyone who I’ve met on this journey.

Next time, I’m going to talk about what happens when you are diagnosed. Please feel free to leave a comment and if you buy something from Amazon through my blog, or click on an advert, 100% of the money that I get goes to Brain Tumour Support.

Thanks and I will see you soon.

Phone apps that I use

Hi there and welcome back to my blog. How are you? I hope that you are well. Today I’m going to talk about what app that I use everyday. They are the following:

  • iOS reminders
  • Productive/ Habit Hub
  • IFTTT/ Do button with google sheets
  • Headspace
  • My fitness pal
  • Drops
  • Solitaire

iOS reminders (in built with iOS)
Because I’m on so many tablets at different times, I use this everyday, for everything. Including non medical reminders like practice handwriting, play the ukulele and give Mum a hug.

Productive(iOS)/Habit hub (Android)
When I first met up with Joe, back on February 2017, he showed me an Android app called Habit Hub. Joe uses Habit Hub to get a habit of getting up at 5:30, go out for a walk and don’t smoke. After some googling, I found out that Habit Hub wasn’t on iOS. So I used an app called Productive. Back in February, Joe got me to make three habits. Those three were make the bed, help out around the house for 20 minuets and go for a walk. At least two of those habits are over a year now.

IFTTT with Do button and Google Sheets (IFTTT iOS, Google sheets iOS, IFTTT Android, Google sheets Android)
When I track the amount of times that I go to the bathroom, I use Do Button. What Do Button does, its a programmable Button that does whatever you tell it to do. I use it with Google Sheets to put the date and time. Now IFTTT have built Do Button inbuilt with IFTTT, so there’s no need to download too many apps.

Headspace (iOS/Android)
As I said in another blog post, I’ve been using Headspace for over a year now. The benefits are amazing. I’m a lot more calmer, I’m more at peace with everything. Yes, it does cost but you can share logins, if coming from the same address.

MyFitnessPal (iOS/Android)
As I mentioned in an earlier blog post, I’ve been using MyFitnessPal to trck the amount of calories that I’m consuming. I also use this app to track what food makes me go to the bathroom.

Drops(iOS/Android)
As an Indian who can’t speak Hindi, even before my diagnosis, I was always embarrassed to talk to my cousins, whenever I would go on holiday with my extended family.

The way it goes through learning a language is by doing: it shows up a picture and then it displays the same word in Hindi, the same word in English, the pronounced way and a person would pronounce the word for you.

It starts off with the alphabet and then it moves on to common words and phrases.

Solitaire (iOS/Android)
Every morning, I like to play the daily challenge, to see that I’m getting better. I try to not to use hints, but sometimes it can’t be helped.

Well that’s it. Once again, I just want to thank a few people. Firstly, I would like to thank my mum, dad, sister and my Naughty Mamaji, for being by my side, throughout everything. I would like to thank Louise from BTS for sharing this with the community. I would like to thank Kanika, Shirley and everyone at Carers Trust for giving me the confidence to sharing my story and I would like to thank Joe for motivating me to getting back on the horse. And I would like to thank everyone at the hospital, my family and friends and everyone who I’ve met on this journey.

The next time, I’m going to talk about dealing with the belief that you are getting better. Please feel free to leave a comment and don’t forget, if you buy something from Amazon, through the blog, or click on an advert, 100% of the money that I get goes to Brain Tumour Support.

Thanks and I will see you soon.

Brain games that I play

Hi there and welcome back to my blog. How are you? I hope that you are well. Today I’m going to talk about the brain training games that I like to play everyday. I will also give a quick review of them.

Brainwell – iOS Android
This is one of the first brain training games that I started playing. I actually started playing this game before my diagnosis. The one particular thing that I like about this game is that, when you complete a round, it shows your score and compares it to players in different age groups

Lumosity – iOS Android
This game is another game that I started playing before my diagnosis. I find this game useful when it comes to memory. It has a mini game called “Tidel Treasure” where you have to pick out unique objects from an ocean bed.

Peak – iOS Android
This is first game that I started playing post dianogus. This is the only game that I’ve paid for, because it had a Black Friday sale. This has a wide variety of games. From focus, memory and emotions are just a couple of themes that this game has.

Elevate – iOS Android
This game is brilliant for remembering names. On it, it has a game called “Name Recall”. What happens in Name Recall, is you put on a pair of headphones and it will show you a picture of a person with a spoken and written description of that person. It shows four people with different names, descriptions and photos and then it shows a single picture, and then you drag the correct name to the picture. It shows all four pictures individually at first, then it will show two pictures at a time and afterwards, it will show all four pictures, greyed out with a written description from earlier on. You then drag the correct name to the description.

All of theses games are free in the App Store and available on Android.

Well that’s it. Once again, I just want to thank a few people. Firstly, I would like to thank my mum, dad, sister and my Naughty Mamaji, for being by my side, throughout everything. I would like to thank Louise from BTS for sharing this with the community. I would like to thank Kanika, Shirley and everyone at Carers Trust for giving me the confidence to sharing my story and I would like to thank Joe for motivating me to getting back on the horse. And I would like to thank everyone at the hospital, my family and friends and everyone who I’ve met on this journey.

I just want to thank a couple of extra people. Recently, I had a birthday,  (the big 3 – 0), and Facebook allows your friends on Facebook to donate to a charity. I chose Brain Tumour Support and I raised £210. So I would like to thank George Wallis, Scott Crowther, Sunita Kaushal, my Naughty namaji, Rani Sharma, Rebecca Lee, Kirsty Watson, Rahul Prashar, Suresh Prashar, Pravesh Prasher and Mark Abbott. Thank you so much.

The next time I’m going to talk to you, I’m going to talk about what phone apps that I use everyday. Please feel free to leave a comment, and don’t forget if you buy something from Amazon, through the blog, 100% of the money that I get goes to Brain Tumour Support.

Thanks and I shall see you soon.

Items that I use everyday

Hi there and welcome back. How are you? I hope that you are well. Today I’m going to talk about items that I use or used to use everyday.

Firstly, I would like to clear up a couple of things from the last blog post, I am not a resident at the Myton hospice, I only go to the myton hospice for physiotherapy, art therapy and our monthly Macmillans meetings. Ok, now that’s all sorted, let’s get back to our scheduled program.

Coconut oil and Elemis cream

Be cause of the tablets that I’m taking (hydrocortisone), my muscles are weak and sore. Especially with my right side. Every morning, I like to rub coconut oil and then Elemis cream and put it on my hamstrings and thighs.

Coconut oil and bicarbonate of soda

Another use of coconut oil is to get rid of stretch marks. To make this, you add two tablespoons of coconut oil to one tablespoon of bicarbonate of soda.

To use, put on the mixture on your stretch marks and leave it in for 7 minutes. Then wash off. The results are amazing.

Vicks

As a child who suffers from eczema, I had wished I had known about it sooner. Recently, my mum had read a comment on Facebook asking about keeping dry skin, especially with this hot weather we’ve been having recently. Someone said Vicks, so that night, I tried it on my feet, where my eczema has flared up recently, and it has worked wonders.

Electric toothbrush

Recently I’ve stopped using an electric toothbrush because I’m stronger now thanks for my physio telling me to start lifting weights. But when I did suffer from weakness in my muscles, I couldn’t use a manual toothbrush, so that’s why I bought an Oral B toothbrush.

Giant flash

Before I couldn’t carry my tea, I used to use this giant flask to make my tea. I still use it everyday to get hot water from and every morning, I like to empty out the cold water from yesterday’s filled flask and put into a jug.

Andrex flushable wipes

I know that this last one is embarrassing, but here we go. Sticky stool is a side effect of hydro cortisone. I’ve been using Andrex flushable wipes for over a year and I’ve cut down on the amount of toilet paper that I’ve been using.

To recap, coconut oil with Elemis cream, coconut oil with bicarbonate of soda, Vicks, electric toothbrush, giant flask and Andrex flushable wipes.

Well that’s it. Once again, I just want to thank a few people. Firstly, I would like to thank my mum, dad, sister and my Naughty Mamaji, for being by my side, throughout everything. I would like to thank Louise from BTS for sharing this with the community. I would like to thank Kanika, Shirley and everyone at Carers Trust for giving me the confidence to sharing my story and I would like to thank Joe for motivating me to getting back on the horse. And I would like to thank everyone at the hospital, my family and friends and everyone who I’ve met on this journey.

The next time, I’m going to talk about the brain training games that I play. Please feel free to leave a comment, and please feel free to leave a topic that you would want me to talk about.  Don’t forget, if you buy something from Amazon, through the blog, 100% of the money that I get goes to Brain Tumour Support.

Thanks and I will see you soon.

Physiotherapy and the benefits

Hi there and welcome back to my blog. How are you? I hope that you are well. Today, I’m going to talk about the physiotherapy that I’ve started with the Myton Hospice in Coventry. I’ve started going since December last year and finished in March, this year, and I’m seeing improvements.

Ever since I was a child, I would struggle with balance. I couldn’t ride a bike as a child or an adult. Since my diagnosis, my balance has gotten worse. I would struggle carrying a cup of tea and I would constantly trip over and fall down

Ever since I started physiotherapy, I’ve been able to carry a cup of tea and a plate at the same time and I rarely trip over anymore.

So how did I do it?

Stand and sit
Try to stand on one leg

Stand and sit
What you have to do, is sit down on a dining room chair and get up and sit down over and over again. You do this five times in a row, once a day to start off and then you do it twice a day. After that you increase the number of times that you stand and sit by one and then you increased it by one every week.

Try to stand on one leg
What you do is you try and stand on one leg, for as long as you can. You stand next to a table or countertop, for support. This exercise is really tricky especially when you have a weak side of the body, like me.

The stand and sit exercise is a simpler version of a squat, where you go down and up over and over again, without using a chair. The stand on one leg is just standing on one leg.

So how am I doing now?

Well, I can carry a cup of tea and sometimes two at the same time. OK, I take small steps when carrying a cup of tea but I’m slowly improving.

Another couple of benefits that I’m getting from physiotherapy is a little bit of my independence.

Jo, the physiotherapist, said that I need to start shaving by myself, join a ukulele group and attempt to give eye drops to myself. The first two, I’ve been doing for a few months. The last one, I’m able to give myself one dosage for over 70 days. I struggle with the eye drops in the afternoon and evening because of my fatigue, but the morning ones, I’ve got it down.

Recently at a MacMillans group get together, Jo was there with leaflets on being active. One of the items was about Tai Chi and how it can improve your balance. From that week, I started to do Tai Chi every week. In fact, only this past week, when I was practicing Tai Chi at home, I was able to stand on one leg without holding on to anything.

Well, that’s it. Once again, I just want to thank a few people. Firstly, I would like to thank my mum, dad, sister and my Naughty Mamaji, for being by my side, throughout everything. I would like to thank Louise from BTS for sharing this with the community. I would like to thank Kanika, Shirley and everyone at Carers Trust for giving me the confidence to sharing my story and I would like to thank Joe for motivating me to getting back on the horse. And I would like to thank everyone at the hospital, my family and friends and everyone who I’ve met on this journey.

The next time, I’m going to talk about items that I use every day or did use everyday. Please feel free to leave a comment and don’t forget, if you the link at the end of this blog and buy something from Amazon, 100% of the money that I get goes to Brain Tumour Support.

Thanks and I will see you next time.

How I managed to walk 10,000 steps a day

Hi there and welcome back. How are you? I hope that you are well. Today I’m going to talk about, how I’ve been doing over 10,000 steps a day. It’s not easy, even without a dodgy right leg, but achievable. Here’s how:

  • Cook
  • Walk in town/shopping
  • Find a path at home
  • Have a competition with someone
  • Stick a treadmill in front of the TV
  • Build it up slowly
  • Energy balls
  • Self motivation

Cook
I make my own breakfast, everyday. I make, two slices of doubled buttered toast, cooked on a flat pan, with guacamole and crunchy peanut butter. No, I’m not pregnant.After my radiotherapy, my tastes buds have changed. I never used to like guacamole, but now I love it.  When I put the slice of bread on the pan, I like to walk up and down the kitchen. Doing that is about 2,000 steps. Do that three times a day and you’re already halfway.

Walk in town/shopping
I’m lucky that I live on a main road, where there are lots of shops (and bus stops). Whenever I go to the shops with my mum, I always do over 10K by the end of the day, even without going on the treadmill. Because there are a lot of bus stops on our walk, we do take breaks. Me because of my fatigue and my mum, because of her back.

Find a path at home
Back in January this year, I had the flu and didn’t go out for a walk in a week and I hardly went on the treadmill. And yet I still did over 10,000 steps a day. What I did was that I worked out a path at home that was over 250 steps. I did that four times every hour until I got to 9K.

Have a competition with someone

This is my uncle. He is known in my house as Naughty Mamaji. Mamaji is Hindi for uncle/Mum’s brother and Naughty because he used to pick on me and my sister when we were little. He is the one that took me to the F1 British Grand Prix, back in 2016.

Since July last year, we’ve been texting each other updating each with the amount of steps that we do everyday. It’s motivating to compare with someone, it pushes me to beating him everyday. Although, there are days that he does 15K and more.

Stick a treadmill in front of the TV
My Dad brought home a second hand treadmill back in December 2016 from a friend of his. Ever since my Dad set up the treadmill, it’s been pointing towards the TV.

When the TV is on and I’m on the treadmill, a half an hour on it, seems to float by. My sister is a big fan of the Simpsons and that is usually on when I go onto the treadmill.

Slowly build up the number of steps
When I started walking to lose weight, I jumped straight to 10K. That was a bad move, because my sides mostly started to ache. After taking a break from my walk, I’ve settled a goal of 6,000 and every week, I would add 500 steps to my goal. By the time my goal was 8,000, the amount of steps was over 10K.

Energy balls
Before every walk, I like to have a homemade energy ball. It’s a good little power boost that I need to get me out of the door. The recipe that I use is here.

Self motivation
I know that I go on about this app called Productive (iOS) or Habit Hug (Android), but it’s really motivating to see how many days in a row. I’ve walked over 10,000 steps in 200 plus days.

I know that it can be hard to do something like this everyday, but hopefully.with these  tips, you should be able to do this and lose weight.

So, that’s it. Once again, I just want to thank a few people. Firstly, I would like to thank my mum, dad, sister and my Naughty Mamaji, for being by my side, throughout everything. I would like to thank Louise from BTS for sharing this with the community. I would like to thank Kanika, Shirley and everyone at Carers Trust for giving me the confidence to sharing my story and I would like to thank Joe for motivating me to getting back on the horse. And I would like to thank everyone at the hospital, my family and friends and everyone who I’ve met on this journey.

The next time that I talk to you, I will be talking about the physiotherapy, that I’ve started at the Myton Hospice. And don’t forget, if you buy something from Amazon, through my blog, 100% of the money that I get, goes to Brain Tumour Support.

Thanks and I will see you soon.

How I built my confidence back up

Hi there and welcome back to my blog. How are you? I hope that you are well. Today I’m going to talk about how I built my confidence. Even before my diagnosis, I was a shy lad. But somehow, through my diagnosis, I’ve met more people, spoke to a lot more people and I’m a lot more confident.

Before my diagnosis, when I used to work in Birmingham, myself and my work colleagues used to go out every Friday night and drink. They would call me “Party Arvin” or “Parvin” for short. That’s because, when I drank, I was a lot more confident.

Now, I don’t drink at all and yet I’m confident enough to be playing the ukulele in front of the Brain Tumour Support Coventry group. And I was able to to this.

Recently, I’ve joined a ukulele group called “The Earls of Uke”. A Coventry based ukulele group who meet up once every two weeks. This was their first public performance and it was only my fourth time that I’ve been to a group meeting.

So how did I do it?

  • Volunteering
  • Slowly building myself up
  • Meditation
  • Wear hats and change toothpaste
  • Being with people in the same boat

Volunteering
Back in August 2017, I started to volunteer at Carers Trust. I had originally went to Carers Trust to ask for a confidence building course. But then Colin, a worker at Carers Trust said, why don’t you volunteer here? So from that day I’ve been volunteering every Friday for about an hour. The only reason that I go there for a hour is because I get tired. But at the start of this year, I’ve been going every Friday and Tuesday and every time that I’ve been going, I’ve been extending my time there by five minutes, to slowly build myself up to do two hours in a row.

Say hello to my sister, Arveena. She is a shy, mildly autistic, first Dan black belt in kickboxing. Even though she’s a first Dan black belt, she is still hesitant and shy.

And then she started to volunteer with Look Good Feel Better, a charity that looks after people that are going through cancer with makeovers. She has been doing that since 2016 and ever since, I’ve seen her confidence grow. (She still treats me like a younger brother, even though I’m older). Arveena also has a blog. Here’s the link. It’s about life as an autistic woman.

Slowly building myself up
Just this past week, I was able to answer the phone at Carers Trust. I was able to talk to a real person, deal with their request and wished them a good day  I was able to do this, thanks to Shirley, the volunteers coordinator at Carers Trust. We firstly started off with the greeting. Then I started answering internal phone calls and learnt how to transfer phone calls. We practice this a number of times before I knew that I was ready.

Meditation
The Headspace app, that I’ve been using for over a year, has a self esteem course. I had to do it a couple of times, but it’s definitely helped.

Wear hats and change toothpaste
As a young man with very little hair, I always like to leave the house with a hat on. Because I had radiotherapy on the whole head and on the pituitary gland, my hair hasn’t come back to what it was. I even went to a wedding with a hat on. Here’s a picture of me before the wedding.

With toothpaste, I’m always self conscious about the colour of my teeth. That’s why I started using Oral-B 3D White Toothpaste and ever since then, I’ve been smiling a lot more.

Being with people in the same boat
I can guarantee, that you can ask anybody from the Coventry Brain Tumour Support group, and you can ask them, what I was like during my first few meetings. And they would say a shy little boy. Over the next few meetings, my confidence grew slowly. Recently a member of the group, called Helen, has been commenting on how my speech and confidence has improved.

Recently, I’ve joined a Facebook group called “Brain Tumours with Humour” They are a group of people who laugh at the situation that we are in and it’s nice to have a laugh with people in the same boat as you. I do really think that laughing with others, helps with recovery. Of course there’s the Brain Tumour Support, the Brain Tumour charity, the Macmillan and the Shine Young cancer Facebook groups and pages.

I know that it can be hard to go out of your comfort zone and spread your wings, it was hard for me. But hopefully, through these tips, you should be able to get back your confidence.

So, that’s it. Once again, I just want to thank a few people. Firstly, I would like to thank my mum, dad, sister and my uncle, for being by my side, throughout everything. I would like to thank Louise from BTS for sharing this with the community. I would like to thank Kanika, Shirley and everyone at Carers Trust for giving me the confidence to sharing my story and I would like to thank Joe for motivating me to getting back on the horse. And I would like to thank everyone at the hospital, my family and friends and everyone who I’ve met on this journey.

Please feel free to leave a comment and don’t forget, if you buy something from amazon, through the blog, 100% of the money that I get goes to Brain Tumour Support

Next time, I’m going to talk about how I managed to walk over 10,000 steps a day.

Thanks and I will see you soon.

How I handle scanxiety

Hi there and welcome back to my blog. How are you? I hope that you are well. Today I’m going to talk about the dreaded MRI scanxiety.

I know what’s is like to feel scared before, during and after the scan. After my second scan (because the first one was after the car accident) I was scared stiff. Why am I going back to the hospital? Why are they scanning my brain? What’s that noise in the machine? Why does my head hurt?

Theses were the questions that I was asking before/during/after my first head MRI, and still do after being in the clear for over two years.

So how do you control this? Here are some things that I do.

  • Deep breathing
  • Internal chanting
  • Relaxations techniques (EG: singing, dancing)

Deep breathing
I meditate quite a lot. For over a year, I’ve been using the Headspace app. At the start of all meditations, the guy on the app tells you to take a big breath in through your nose, and then breathe out through your mouth. You do this several times, then afterwards, you shut your eyes and bring your breathing pattern back to normal. I like to do this everyday as part of my meditation, but I like to do this before every MRI.

Internal chanting
Every time I go for a MRI, when I’m in the machine, because I’m a Hindu, I like to say “aum”. You can say whatever you want. Sometimes, I like to say “just keep swimming, just keep swimming” from the Finding Nemo/Dory films. It’s ok to mix it up between MRIs but I try to keep it the same when you are in the MRI.

Relaxing techniques (singing / dancing)
Now I know that you can’t sing and dance while in the MRI, but before and after, you are more than welcome to. As a man with two left feet full of lead, I struggle with grooving to the beat, but I still do. Why? Because it relaxes me. I don’t have the voice of an angel, but I still do it. Why? Because it relaxes me. I’m pretty sure that there are other ways to relax like baking, cooking, knitting, painting etc…

So that’s it, theses are my tips on how to get through another MRI. Once again, I just want to thank a few people. Firstly, I would like to thank my mum, dad, sister and my uncle, for being by my side, throughout everything. I would like to thank Louise from BTS for sharing this with the community. I would like to thank Kanika, Shirley and everyone at Carers Trust for giving me the confidence to sharing my story and I would like to thank Joe for motivating me to getting back on the horse. And I would like to thank everyone at the hospital, my family and friends and everyone who I’ve met on this journey.

Please feel free to leave a comment and if you buy something from Amazon through my blog, 100% of the money that I get goes to Brain Tumour Support.

Next time I’m going to talk about how I built my confidence.

Thanks and I will see you soon.

The hyperbaric oxygen chamber and its benefits

Hi there, and welcome back to my blog. How are you? I hope that you are well. Today I’m going to talk about the hyperbaric oxygen chamber and the benefits that I’m getting from it. The hyperbaric oxygen chamber (HBO) feels and looks like a submarine. Here’s a picture of inside the chamber at Mercia MS Centre and below that is a picture of wearing the mask and headphones.

The chamber

Me in the chamber

It’s a giant metal container with seats in it. What you do is sit down in a chair, clear your ears while the pressure increases by swolling your saliva and when the pressure increases, you put on a breathing mask and breathe in pure oxygen for about an hour. The first session is a trial session and that lasts for 20 minutes. The idea is that you do an intense course of twenty sessions in five weeks and then either do one session a week or do another intensive course, twice a year. This is forever, but over the Christmas break, where the centre was closed, I rented out an Airenergy system. Airenergy is a box where you put filtered water in, stick a breathing tube in and the box makes oxygen from the water. You can do this either four times a day, for twenty minutes each time or do it twice a day, at forty minutes a session.

HBO is designed for people with MS but I’ve found it to be very useful. It’s helped me with the following:

  • My eyesight
  • Diabetes insipidus
  • My hand eye coordination
  • Short term memory

My eyesight
Before the chamber, my eyesight had deteriorated to the point where I wasn’t comfortable driving. I would get headaches and dizzy spells when going on the computer. As I was a front end web developer before my diagnosis, this actually scared me. How am I going to go back to work?

Diabetes insipidus
As I mentioned in my last blog post, I suffer from Diabetes Insipidus. Before the chamber, a good day would be me going to the bathroom ten times.

My hand eye coordination
As I mentioned in an earlier blog post, I play the ukulele and have poor handwriting. I’ve been practicing both of those for over 200 days now.

Short term memory
I play a lot of brain training games. Before the chamber, my scores were low, especially with memory.

So how am I doing now?

Well I no longer get dizzy in front of the computer. I still get headaches, however, they are very mild. It’s allowed me to share my story with you. When I go for walks with my mum, I read out license plates to her. It’s at over twenty feet away.

As I spoke to you in my last blog post, the number of times that I go to the bathroom has gone down dramatically. Before the chamber, on a good day, I would go to the bathroom 10-12 times. Now on a bad day, I would go to the bathroom six times.

I’ve been playing the ukulele constantly for over 200 days now and it’s improved. Here is a recording of me, playing and singing “Somewhere Over The Rainbow”, before the chamber.

And here’s a video of me playing and singing “Somewhere Over The Rainbow” and “Viva la Vida” at this recent February Brain Tumour Supports meeting.

The same goes for my handwriting. I’ve been using Chinese baoding balls for over 200 days now. My right side of my body is weaker than my left side. I believe this is due to “my holiday” back in March 2016. Before the chamber, I would struggle with my right hand. Now my right hand is improving.

I take Hydro Cortisone at 100mg in the morning, 50mg in the afternoon and 50mg in the evening. The chemist gave me a pill splitter for the 50mg dosage. Before the chamber, my mum did them for me, now I do it and my mum says that I do it better than her.

With all of my brain training games, my scores have gone up, especially with memory.

There are some side effects. I get headaches whenever I take a tablet, I’m hoping that in May, when I see the neurologist, that they can reduce the dosage. I’m also getting stomach pain whenever I take a Hydro Cortisone.

Well that’s it. Once again, I just want to thank a few people. Firstly, I would like to thank my mum, dad, sister and my uncle, for being by my side, throughout everything. I would like to thank Louise from BTS for sharing this with the community. I would like to thank Kanika, Shirley and everyone at Carers Trust for giving me the confidence to sharing my story and I would like to thank Joe for motivating me to getting back on the horse. And I would like to thank everyone at the hospital, my family and friends and everyone who I’ve met on this journey.

Please feel free to leave a comment. If you know anywhere that offer a hyperbaric oxygen chamber, you are more welcome to leave it in a comment. If there’s more than a couple of places, I’m tempted to create a interactive map for it.

Please feel free to use my Amazon U.K. affiliate link. And if you buy something from Amazon, 100% of the money that I get, goes to Brain Tumour Support. Next time, I’m going to talk about scanxiety and how to handle it.

Thanks and I will see you soon.