Category Archives: Brain tumour

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.

How I controlled my diabetes insipidus

Hi there and welcome back to my blog. How are you? I hope you are well. Today I’m going to talk about diabetes insipidus and how I learned to control it. Diabetes insipidus is what happens when you have a tumour on the pituitary gland. The symptoms of diabetes insipidus are a constant dry mouth, drinking a lot of water and going to the bathroom a lot.

As I mentioned in a earlier blog post, I’ve been suffering for a long time. At 2013, I would take 4 bottles of water, buy another big bottle of water and I would refill my big bottle for the train ride home, and I would still feel thirsty. When I spoke to my family about this, my sister said that you could drown your organs. When I spoke to my GP about this, he said that I was low on vitamin D. When I spoke to my consultant about it, he then put me to another department in the hospital and they were the ones who diagnosed with diabetes insipidus.

These days I only drink either with food or to take a tablet. And on a bad day, I would drink 2.5 litres and I would go to the bathroom 6 times or less. So how did I do it? Here’s how:

  1. Track everything that you eat and drink
  2. Go decaf
  3. Listerine mouthwash
  4. Wear loose underwear
  5. Wear man braces not a belt
  6. Stay warm but not too too warm
  7. Kegels
  8. Hyperbaric oxygen chamber

Track everything that you eat and drink

Since September 2016, when I was told by my consultant that I needed to cut down on the amount that I drink or they were going to up my dosage. The next day, I started to use my phone’s calculator to see “on paper” how much I was actually drinking. Ever since then, I’ve been slowly cutting down the amount that I drink.

When it comes to going to the bathroom, tracking what you eating and drinking helped me. This time last year, I would drink a lot of Irn-Brw. Once I saw that I was going to the bathroom, right after drinking it, that’s when I decided to stop drinking it.

Go decaf

Irn-Brw, like most fizzy drinks, has a lot of caffeine in it. Caffeine makes you go to the bathroom. That’s why I only drink decaf tea, water, juice and hot coconut milk.

Listerine mouthwash

When I told one of my uncles about my constant thirst, he recommended me to use Listerine Cool Mint Mouthwash. Ever since then, I don’t get thirsty as much as I used to.

Wear loose underwear

Last month, when I had convinced myself that I lost enough weight to try on these boxers that were far too tight when I bought them, I went to the bathroom in the middle of the night and I had pain in my bladder throughout the day. As soon as I swapped my boxers, the amount of times that I go to the bathroom went back to normal.

Wear man braces not belts

Just over a year ago, I decided to wear man braces. In a similar reason to my last point, tight clothing around the waist, makes you go to the bathroom.

Stay warm but not too warm

It’s a known fact that the cold, makes you to the bathroom. And being hot makes you drink more. So stay warm, but not too warm.

I learned how to stretch my bladder by doing an exercise called kegels.

Kegels

Kegels are not just for pregnant women, they definitely helped me controlling the number of times that I go to the bathroom. Here’s how I do it. Firstly, make sure that your bladder is empty and then squeeze your bladder for three seconds and then release for three seconds. Do that ten times, three times a day.

To be honest, I don’t do that anymore because in September 2017, I’ve been using a hyperbaric oxygen chamber.

Hyperbaric oxygen chamber

As I mentioned in my first blog post, the hyperbaric oxygen chamber fixes the body from radio and chemotherapy. I will go into more detail in my next blog post.

So that’s it. To recap, track everything that you eat and track the amount that you drink, switch to decaf, Listerine Cool Mint Mouthwash, wear loose underwear, wear man braces., stay warm but not too warm, kegels and hyperbaric oxygen chamber.

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.

The next time, I’m going to talk about in more detail about the hyperbaric oxygen chamber and it’s benefits.

Please feel free to leave a comment, share with friends and if you buy something from Amazon, using the link link at the bottom, 100% of the money that I get goes to Brain Tumour Support.

Thanks and I will speak to you soon.

How I lost weight

Hi there, and welcome back to my Brain Tumour Blog.How are you? I hope you are well.In this post, I am going to talk about, how I lost weight.Now I know it’s February, where most New Year’s Resolutions are no longer valid, but I’m hoping that this post will motivate you.

As I discussed in my last post, I was in hospital for 10 days, with a fluid blockage in my brain, after radiotherapy. in March 2016.I had to be given lots of steroids, which gave me massive weight gain. From 70KG to 114KG. Here is a picture of me when my uncle took me to the F1 British Grand Prix in 2016.

And here is a picture of me today.

In October. I was told by my diabetes insipidus consultant, that I had a fatty liver and I needed to lose weight.I now weigh 78KG and my waist is down from a tight 40 inch to a loose 38. So how did I do it? Heres how I did it:

  1. Electronic devices
  2. Easy exercise
  3. Walking
  4. Smaller plates
  5. Track your input
  6. Cucumber juice

Electronic devices

As I mentioned in my last blog post, for my 28th birthday, I got an Apple Watch. Now I know that there are other devices that are like it, but this is my story. Anyway, with the Apple Watch, it sets a calorie move goal. A calorie move goal is worked out by being active. When you hit your goal, a congratulatory tone plays with a well done message. Every Monday, it slowly increases your move goal.

The Apple Watch also has an exercise goal and a stand goal, which don’t change. The exercise goal is for 30 minutes of a brisk walk and for the stand goal, you have to stand for a minute, every hour, 12 times a day. As with the move goal, when you hit your goals, a well done message with a congratulatory tone.

Every Sunday, if you managed to hit your target, a couple of badges appear on your watch and phone. There is a longest move streak, where if you hit your move goal, in multiple days in a row, a well done message with a congratulatory tone pops up on your watch and a badge appears on your phone.

Easy exercise

So how did I hit my goals? Well back in March 2016, when I went into the hospital for 10 days, my knees were swollen and my mum brought home a floor bike to help me move my legs. I would start for about 5 minutes and slowly build myself up to where I would spend over 2 hours on the bike. I don’t go on the bike that much anymore because back in April 2017, I got a bladder infection. So these days, I make my own breakfast, go on walks with my mum and go on the treadmill.

Walking

As I mentioned in my last blog post, back in July 2017, I had lunch with an old work colleague called Joe.We spoke about 3 goals that I could do everyday for 100 days. My goals were to play the ukulele, practice my handwriting and hit 6,000 steps.

The reason for playing the ukulele and practice handwriting was because these were the two habits that I needed to do everyday.  As I mentioned in my last blog post, I started playing the ukulele back in 2012, but I stopped playing when I was diagnosed. The only reason that I started playing again was after my first Brain Tumour Support group meeting in Coventry, I spoke to Sam who said that I needed to sing and be happy. I only sing when I play the ukulele.

The reason for handwriting practice is because throughout my life, I’ve had messy handwriting. I had bought handwriting books for key stage 2 and 3 children. I now write my blog on paper first.  All three of these habits are over 100 days.

The reason for 6,000 steps is because we spoke about the amount of steps that I do on a good day. That number was 5,500 and 6,000 was an extra push.  100 days later and my average is over 10,000. Luckily for me, I live on a main road, with lots bus stops. I still get tired from all of those steps, especially when I go to town to volunteer at Carers Trust. I normally end up falling asleep on the bus to and from town.

Smaller plates

Before I decided to lose weight, these were the plates that I was using.

Theses are the plates that I’m using now.

By doing this, you are tricking yourself that you are more full than you are. Even though the difference is minuscule, over time it makes a difference.

Track your input

Recently my aunt showed me this app called MyFiitnessPal iOS  – Android (MFP). MFP is an app that you put the food that you are going to eat and it tells you the amount of calories that you are going to consume. It also has a calorie take away by putting in the amount of calories that you have burned.

This is pretty useful when it comes to picking food that is low in calories and it motivates you to burn off a little more if you had a heavy lunch or a desert. I’ve been using MFP for over 200 days now.

My last tip is cucumber juice

Cucumber juice

Recently, I started drinking cucumber juice. I followed this recipe that I found on YouTube. Here’s the video. Cilantro is just coriander.

As  a child with a large stomach even before my holiday in March (See I told you that I refer my time in the hospital as a holiday), I found this to be very useful. It does make you go to the bathroom just before bedtime, but I guess anything would make you go if you are going to drink that much before bed.

To recap

  1. A device to track the amount of calories that you are burning
  2. A small task that you do everyday and slowly increase
  3. Walking and slowly increase the amount of steps
  4. Smaller plates
  5. Track the amount of calories that you are eating
  6. Cucumber juice

Well, that’s that, 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 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 will talk about diabetes insipidus and how I controlled my input and output. Please feel free to leave a comment and don’t forget, if you buy something from Amazon using the box at the bottom, 100% of the money that I get goes to Brain Tumour Support.

Thanks for the support and I shall see you soon.

What I’ve been upto over the last couple of years

Hi there, my name is Arvin Kaushal and in October 2015, I was diagnosed with six brain tumours. I wasn’t scared at all when I found out, due to the support  of my family.

So how did I find out about this? Well in June 2015,  my mum and I got involved in a car accident, where I somehow managed to rolled over my car on the Coventry Ring road.

The paramedics took both of us in and we had a full body MRI. I was home on the same day, however my mum was in the hospital for a week with a fractured spine. Unfortunately it wasn’t the last time one of us would spend a week in the hospital.
A couple of months later, I got called back into the hospital for a MRI on my head. A couple of weeks after that, I found out that I had 6 germinoma tumours in my brain. They were scattered all over the brain including the optic nerve and the Pituitary gland.

I was scheduled to start radiotherapy in the 28th. On the 2nd of December, I went into the hospital to get my MRI mask made. The mask was made so that  my head didn’t move during radiotherapy. A couple of days later, I got a call from the hospital saying that I could start radiotherapy on the 8th of December.

Before my first radiotherapy session, I had lunch with my best friend. We’ve been friends since nursery. I told him about my diagnosis and that was the last time that he spoke to me.

On the 8th, I had to lie down on a table, take off my jewellery, empty my pockets, put my mask on and lie down in a machine for about 20 minutes. I had to have 2 lots of sessions. One for the overall head and the other on the Pituitary gland. I started my second radiotherapy session in 2016. For some reason, I got constipation from radiotherapy.

My hair started to fall out on Christmas night and on Boxing Day, as I was going upstairs, I fell down. Luckily, my foot got caught on the banister.

My treatment ended in February and I was told by my consultant to slowly come off Dexamethasone. In March, I went into hospital for 10 days, with a fluid blockage from my brain. I don’t actually remember anything from those 10 days, apparently I asked the doctors, why doesn’t a table come out of the bed?

I had forgotten everybody, but I remember that I had this one nurse who never left my side. I then remembered that it was my mum. My mum ate with me, slept on a chair next to me, she did everything for me during my time in the hospital.

I now refer to those 10 days as a holiday. To fix me, they had to fill me with steroids, which gave me massive weight gain. From 70KG to 114KG. Here’s a picture from 2016 at my birthday.

Before my diagnosis, I was drinking a lot of water and going to the bathroom a lot. I mentioned this to my GP and he told me that I was low on Vitamin D. I mentioned this to my consultant and he referred me to another department at the hospital, where in May 2016, I was diagnosed with Diabetes Insipidus, because I had a tumour on the Pituitary gland, this gave me Diabetes Insipidus

So, how am I doing today?

I’ve been going to the monthly Brain Tumour Support and MacMillans meetings since March last year it’s really useful to be among people in the same boat as yourself. I’ve started playing the ukulele again  I originally started playing the ukulele back in 2012 but I stopped playing when I was diagnosed. The only two reasons why I started playing again was because I spoke to Sam from the Coventry BTS group and she said that I need to sing and be happy. I only sing when I play the ukulele. The second reason is because I was having lunch with an old work colleague called Joe. He came up with three habits to do everyday and one of them was to play the ukulele. My ukulele playing is getting to the point where I’m going to playthe ukulele to the Coventry BTS in the new year.

I got an Apple Watch for my 28th birthday in 2016, and since then I’ve lost over 35KG. In September, I’ve started using a hyperbaric oxygen chamber.

What is a hyperbaric oxygen chamber? A hyperbaric oxygen chamber (HBO) is a giant tank that a group of people go into, they increase the pressure, you put on a mask and breathe in pure oxygen for about an hour. The benefits are amazing. My vision has improved dramatically, my Diabetes Insipidus has improved and I no longer get dizzy when I go on the computer.

The chamber is promoted to fix whatever Radiotherapy and Chemotherapy does to the body. Although I’m seeing and feeling improvement, I am getting headaches from the tablets that I’m talking. The tablets that I’m taking are hydrocortisone, desmopressin, levothyroxine and omeprazole.

I found out about the HBO through Carers Trust, where I’ve been volunteering for about a couple of months. Although it’s for an hour, because I get tired, I have been slowly increasing my time every time I go. In the new year, I’ll be doing two days a week but for an hour each time.

So why am I writing this? Well for a couple of reasons. Firstly, I’ve been quiet online since my diagnosis. Secondly, I felt that my story had to be told. If not a place for me to rant, but a place where I can help others. Finally, I was inspired by a show that was part of Channel Four’s Stand Up 2 Cancer called Fighting Cancer: My Online Diary where two people were suffering from brain tumours.

i just want to thank a few people. Firstly, I would like to thank my mum, 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 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 month, I will go into more detail into how I lost that weight. Please feel free to leave a comment and if you buy something from Amazon by using the link on the page, 100% of all the money that I get from Amazon will go to Brain Tumour Support.The Amazon scheme works like this, if you click on the link below and buy something from Amazon, a percentage goes to Brain Tumour Support. The rates are different to what you get. The rates are the following:

Home Entertainment, Smartphones and Mobile Phones
1.0%
Computer, Electronics, Video Games, Camera, Major Appliances, Digital Software, Gift Cards, Kindle and Fire Accessories, Kindle (all devices), Underwear, Sleepwear, Socks & Hosiery, Loungewear
3.0%
Home, Books, Kindle eBooks, Music, Musical Instruments, Kitchen, Toys, Home improvement, DVD & Blu-Ray, Software, Beer Wine & Spirits, Digital Video Games, Business Industrial & Scientific Products, Handmade
5.0%
Sports & Outdoor, Personal Care Appliances, Health & Personal Care, Stationary & Office Supplies, Baby, Grocery, Pet Products, Car & Motorbike,Lawn and Garden, Beauty, Pantry
7.0%
All other Apparel, Shoes, Jewellery, Watches, Luggage, Amazon Fashion Women, Men & Kids Private Label
10.0%
All other Products
3.0%

Thanks, and I will see you soon.