Author Archives: Arvin

My new brain games

Hi there and welcome back to my blog, how are you? I hope you are well. Today I’m going to talk about the new brain games that I’ve started playing. They are called G E I S T, Neuronation and mindPal.

G E I S T (AKA Memorado)

The one thing about this brain game, that it has a daily IQ test. This test doesn;t give you the answers which makes it difficult to remember the answers. This game offers a completely different set of games compared to my other games. One favorite game that I like to play is called Panda Pop, where you have to tap on the balloons that are styled like a panda and not the actual pandas themselves.

Another round that I like is a round called Painting Path when the player is given a grid of squares and the player has to move these coloured boxes around the grid to fill it but each of the colours have a limited amount of squares to move around in.

The one thing that I don’t like about this game is it doesn’t allow you to replay any of the rounds. And the fact that it doesn’t give you a score, just perfect, passed or failed.

Neuronation

This game is far more complex in its layout and the way that it delivers its tests but all the games are unique, There is this one particular game that I do like playing and it’s called Trail Tracker where the player is given a grid and a set of arrows and the challenge is to start at certain point on the grid and following the directions, that the game gives you to do.

This game doesn’t constrict you on how long you play but it is full of adverts.

MindPal

This game has only a couple of unique games, the rest are all copies from previous games. There is this one game called Path Finder where you get a grid with dots all over it and the aim is to connect up the matching colour dots up without crossing paths and using the whole grid.

All of these games are free and available in the iOS app store and in the Google Play store.

That’s it for now. 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 everyone 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 share my story and I would like to thank Joe for motivating me to get 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 the word games that I like to play every morning. Please feel free to leave a comment and as always, if you buy something from Amazon, through the blog or click on an advert, 100% of the money that I get goes to charity.

Thanks and I shall see you soon.

2020 Q2 in review – the lockdown era

Hi everyone, and welcome back to my blog. How are you? I hope you are well. Today’s blog post is another recap of the past three months. About my current health status, my hobbies and everything else in general.

My eczema

My eczema is still there but fortunately getting better. After finding out that apple cider vinegar has sugar in it, I’ve stopped using it for baths and drinking it because it was making my skin worse. These days, I use this non-vegan milk formula with bath salts and peppermint oil. My skin is softer than ever before but unfortunately, I’m still itchy, especially on the scalp, which scares my mum. And I’m still taking long baths. The longest one being over 8 hours.

 

Hula hooping

I’ve started using a weighted hula hoop. I try to go on it everyday but because it’s in the garage, I can’t be bothered due to fatigue or it’s raining, I don’t go on it every day. However, my mum does go on it every day. Even with her back, she is a lot better than me at it.

Paul Bradley fitness

Last month, I attempted a 5 day Paul Bradley fitness in lockdown course. This was hard for me because it involved a lot of getting up and off the floor.  While doing burpees. I didn’t do the whole 5 days because of my fatigue. It did show me a couple of new exercises to do with dumbbells which I’ve carried over.

Back using the hyperbaric oxygen chamber

Throughout lockdown, I didn’t use the hyperbaric oxygen chamber. And to be honest, the only difference that I saw was my fatigue and my eyesight. My brain games are better than ever before. I used the hyperbaric oxygen chamber twice before it shut up again because one of the limited staff members got covid19 themselves.

Adding new brain games

Recently, I’ve expanded my brain games, by adding three more games. I will go into more detail next month.

My drops app

I’ve finished my Hindi level on my drops app. So what I’ve been doing on the app is going through a workout mode called “Dojo mode”, where it goes through all of the chapters and creates a 15-minute game. The highest score I’ve gotten from this mode is 87%

No more Reiki

Unfortunately, Anita has stopped doing her free Reiki, she now charges £10 per person, per session. This is a real shame because when she moved the start time to 7:30, I wasn’t falling asleep. It has motivated me to attempt to learn it myself and perform my own reiki.

My weight

I now weigh it in at 60kg, which has gone up slightly since the last time. Before my diagnosis, I weighed in at 74kg. After the fluid blockage, I weighed in at 114kg. Before my diagnosis, my waist was 36 inches. After the fluid blockage, I had a 40-inch waist. Now I’ve got a 30-inch waist. Before my diagnosis, I used to wear large t-shirts. After the fluid blockage, I wore XXL. Now I’m wearing a medium to small.

My mobility has worsened since the past three months. Because of my eczema, I’m stiff all over, I’m limping whenever I walk and because of the creams that my mum puts on me at night time, I’m extremely warm at night times. My mum sometimes takes the mick of me by calling me an old man.

At the start of the year, I set some goals for myself, to start retraining for a 5K to look to do a 10K, get back to work, and to start the P90X. Unfortunately, I’m still not working, and I’ve haven’t started the P90X yet, but I have restarted my couch to 5K and I’m doing it without energy balls which is a great plus for me.

That’s it for now. 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 everyone 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 share my story and I would like to thank Joe for motivating me to get 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 be talking about my new brain games and give them a review. Please feel free to leave a comment and as always, if you buy something from Amazon, through the blog or click on an advert, 100% of the money that I get goes to charity.

Thanks and I shall see you soon.

My Reiki experience

Hi everyone, and welcome back to my reblog, how are you? I hope you are well. Today I’m going to talk about my weekly Reiki sessions with Anita Wall. Anita does her Reiki sessions through her Facebook group, Distant Reiki Healing. Anita does her sessions once a week, Friday at 7:30pm.

Firstly a bit about Anita. Anita is trained in level one, level two, masters, teaching and masters in teaching. The style of teaching is Dr Usui Reiki with Angel ascension healing. Anita does offer one to one Reiki..I asked Anita why she chose Reiki and she said Reiki brings the positive light through the body dissolving negative energy.

Anita has been doing it for the love of the group since covid began. To help offer support to each other and offer a sense of love and community. Anita is a channel and connects with each and every one of us and this is beautiful healing energy.

The reason that I had started Reiki was because my sister had mentioned it to me that her friend from Look Good Feel Better had started a Facebook group called Distant Reiki Healing. I had said that I wanted to give it a go and then I asked my mum if she wanted to join in. She said yes. So since then, me, my mum and sister have been doing Reiki together.

Everytime the session starts, Anita picks out an angel card from a stack, each with a thought of the day’s meaning. Sometimes Anita, will dedicate her session to a healing crystal. Then Anita would tell us to light a candle and to tell the candle what we want to be healed and what we want from the session. Then the Reiki session begins.

The Reiki session begins a bit like meditation through the headspace app, Anita will tell us to deep breathing, in through the nose and out of the mouth. And then she would tell us to do a slow scan down the body through the different body chakras. As someone who has meditated for a couple of years, I’m quite familiar with the process,

After the session is finished, Anita always tells us that it’s a charitable thing and she tells us to pass on the nature of her Reiki.

Every time the session starts, I always ask the candle to do 3 things: to fix my fatigue, to fix my eczema, and to get me a job.

That’s it for now. 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 everyone 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 share my story and I would like to thank Joe for motivating me to get 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 would like to also thank Anita for providing notes and for her Reiki.

Next time, I’m going to be talking about 2020 Q2 in review. Please feel free to leave a comment and as always, if you buy something from Amazon, through the blog or click on an advert, 100% of the money that I get goes to charity.

Thanks and I shall see you soon.

How I kept my sanity

Hi everyone, and welcome back to my blog. How are you? I hope you are well. Today I’m going to talk about how I kept my sanity during covid19 lockdown. `I know it’s hard when you can’t go out to see friends but it’s still possible to keep your mind occupied.

  • Pick up a hobby (or more)
  • Zoom meetings
  • Chat to an old friend that you haven’t seen for a while.
  • Start a course
  • Write the date on a board
  • Change up your usual meals
  • Change your TV schedule
  • Make new friends

Pick up a hobby (or more)
When you are at home, bored, find a hobby to keep yourself occupied. Either be it some writing, playing a musical instrument, reading a book or some cooking. With me I like to do it all the above. I believe that doing more than one kept me busy and sane.

Zoom meetings
My ukulele group, bhangra class, and my local Headway group meet up every week via zoom. My local Brain Tumour Support group and my local MacMillans joined in cancer group meetup once a month on Zoom as well.

Char to an old friend that you haven’t seen for a while
Last month, I spoke to Joe, via Zoom. It’s been over a year since we spoke face to face and it was really nice to see a familiar face that I haven’t seen for a long time. We now speak once a week now via zoom.

Start a course
This time off is a perfect opportunity to expand our skillset for when we go back to normality. I’ve recently started doing a javascript course on Udemy. It’s there to make sure that I’m ready to get back to work.. Thanks to Joe, I’ve also started use https://www.freecodecamp.org/ to get my skills back up.

Write the date on a board
When lockdown started, we were struggling to work out what date it was. So that’s why my sister started writing the date on an erasable board.

Change up your usual meals
Normally, my dinner consists of mushroom stir fry with rice. But recently, on weekends, I’ve recently started doing these recipes from Bosh with my stir-fries. It’s a break up from the norm that I need.

Change your TV schedule
Before lockdown, me, my mum and sister would spend every weekday morning watching Jeremy Vine. Since lockdown, we have been watching This Morning. I’m not sure which one I prefer just yet

Make new friends
Recently, I joined a Shine young Cancer meetup. It was my first one since Christmas last year. I had a really good time chatting with other young adults. I had a really fun time talking to other people about this horrible illness and even made a couple of new friends. One of those friends also had a brain tumour.

That’s it for now. 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 everyone 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 share my story and I would like to thank Joe for motivating me to get 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 be talking about the weekly reiki sessions that me, my mum and sister have been doing. Please feel free to leave a comment and as always, if you buy something from Amazon, through the blog or click on an advert, 100% of the money that I get goes to charity.

Thanks and I shall see you soon.

;

2020 Q1 in review

Hi there and welcome back to my blog, how are you? I hope you are well. Today I’m going to talk about my first 3 months of 2020. What have I signed up to do, what happened and what’s coming up.

Apple pencil
For Christmas, last year, I got an Apple pencil. It’s taken my creativity to a whole different game. I’m using a calligraphy app every day and I’m planning to start using a drawing app for start doing some drawing.

Long baths every day
Because of my eczema, every morning, I have been going for a bath. The issue is with my baths, I have been taking long baths. The longest bath that I’ve taken is10 hours. I know that it’s not healthy to be having that long of a bath, but as soon as my body is covered with water and bath oils, I feel great. The bath oils that I’ve been using are mustard oil, activated charcoal, neem, and tea tree oil.

Joined LinkedIn
In the last three months, I’ve joined LinkedIn. It’s something that I didn’t do before my diagnosis. But it should have been something that I’ve been doing.

Job update
I haven’t found a job yet. But originally, when I said that I was looking to go back to work, my original deadline was May 2020. If I wasn’t employed by May this year, I was going to start working for myself. That day is now, and I haven’t started any company yet.

Weekly Reiki sessions
Me, my mum and sister have been taking part in weekly reiki run by Anita Wall, a friend of my sisters. Anita volunteers with “Look Good, feel better”, the same charity as my sister does. I will go into more detail about reiki and my review of it in a future blog post.

30-day plank challenge
I’ve started doing planks every day again. But this time they are a slightly modified version of the plank. Instead of going down on my forearms, I’ve been doing straight arms of the plank, which is easier on my shoulders.

I now weigh in at 58kg. I believe that the plan now is to try and put on muscle and gain a bit of weight.

Ultra Comedy event
In this quarter, I’ve signed up to do an ultra comedy event. The idea behind this that a load of amateur comedians, including myself, train them up for 8 weeks and put on a show for Cancer Research. That was the plan. But then…

Coronavirus
This little thing has royally messed up my plans and my lifestyle. Its been over two months, since I’ve been outside, had the hyperbaric oxygen chamber, and gone out and seen someone. I’m still playing the ukulele as part of the Earls of Uke and still taking part in Bhangra Blaze, thanks to technologies like zoom. Earls of Uke meet up once a week now and Bhangra meetups are on a Wednesday now, so I’m able to do both every week.

Because I haven’t been outside, I’m now back on the treadmill. I’m not training for anything yet, because there are no races on so far. What I’ve been doing is going on the treadmill twice a day, but only go on it for ten minutes.

I’ve haven’t restarted the P90X or started training for another 5K/10K because of no races being organized and no time.

That’s it for now. 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 everyone 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 share my story and I would like to thank Joe for motivating me to get 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 be talking about how I kept sane during lockdown. Please feel free to leave a comment and as always, if you buy something from Amazon, through the blog or click on an advert, 100% of the money that I get goes to charity.
Thanks and I shall see you soon.

Benefits of bhangra

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 benefits of bhangra and my experience with bhangra blaze, the class that I go to.

The first time that I went to bhangra blaze class, I was told to fill in a medical form stating what tablets I’m taking and a brief review of my medical history. After that we start the class with a warm up and stretches. After that Amarjit, the teacher will start the class.

The class runs like this, Amarjit will take a whole routine and chop it into little pieces. Then at the end of the class, she will go through the whole routine a couple of times. After that ts a cool down and stretches. We do take water breaks several times through out the session.

Sometimes, the routines have a shout or chant “hoy”. The first time that I went, Kirit Thakore, the founder of Bhangra Blaze, who kept on telling us “if you want to burn 1000 calories, you better scream out “hoy”.

Now I’m going to talk about the benefits of bhangra/dancing

  • It gave me the confidence to go and dance
  • Easily burn 300 calories
  • It’s fun

It gave me the confidence to go and dance

Late last year, me and my whole family went out to a “Look good feel better” Bollywood night fundraising event. My sister said to me, “are you going to dance tonight? And without a doubt, I said yes I would. And did go out and danced the night away! Amarjit was there as well performing and dancing on the floor.

Easily burn off 300 calories

As someone who is trying consistently to lose weight, burning so many calories is a short amount of time is essential to me.I know that Kirit said you can burn 1000 calories, but with my fatigue and hand eye coordination, 300 – 350 calories is the most that I’ve ever burned.

It’s fun

As I’ve said in an earlier blog post, if its not fun, it’s not worth doing. That’s why I like going to bhangra blaze. It’s a fun way to burn off over 300 calories.

To find out more about bhangra blaze, please visit https://bhangrablaze.com/

That’s it for now. 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 everyone 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 share my story and I would like to thank Joe for motivating me to get 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 be talking about 2020 Q1 in review. Please feel free to leave a comment and as always, if you buy something from Amazon, through the blog or click on an advert, 100% of the money that I get goes to charity

.

Thanks and I shall see you soon.

How I built my first website in 4 years

Hi there and welcome back to my blog. How are you? I hope you are well. Today I’m going to talk about how I built my first website in 4 years. Before my diagnosis, I was a front end developer, someone who builds a website based on its looks and interactivity. As compared to a back end developer, someone who builds the functionality. So how did I do it?

  • Relearn everything
  • Design first
  • Typing exercises
  • Go through old work
  • Pomodoro technique
  • Zoom mode

Relearn everything

When I stopped getting dizzy spells on the computer, the first thing that I did was to get an b uDemy account. Because my gap was so long and with the web industry, everything moves so quickly, I had to relearn a couple of things and learn a bunch as well.

Design first

With anything, you have a design first. That’s why I got this design course on uDemy about web design. It goes through the basics of typography, colour schemes and layout. I found it very useful when it came to working on my dads website.

Typing exercises

When I volunteered at Carers Trust, I was asked to send an email. Because of my gap off the computer, I struggled to type up this email. From that day, I decided to learn how to type again. I originally started on https://www.learntyping.org/ and then eventually moved onto https://www.typingtest.com..

Going through old work

When I started designing my dads website, I took my website as a base for it. When it came to coding the site, I took the code from my website, stripped out the code that I didn’t need and created a base template for myself. A template that I can use for other clients. It was also a good idea, to go through my old work, to remind myself of what I was capable of doing.

A couple of months before designing my first website, a fellow brain tumor blogger called Claire Bullimore had asked me if I could use a featured image on my blog post. I told her, I don’t know how to do that. She then sends me a video on how to add a featured image to a blog post. However the featured image was above the heading of the blog post. I worked out where the featured image part of the code was and moved it.

I then told Clare, “I did it. The featured image is below the title now. Like I said before, I used to work with WordPress in developing websites and this little task gave me confidence that I can still do it. So thanks for showing me the featured image.”

Pomodoro technique

Before designing my first website, I had lunch with Joe, and he had told me a technique called the Pomodoro technique. The Pomodoro technique is really quite simple. What you do is you work for 25 minutes and then take a 5 minute break. Do that 4 times, then take a 20 minute break. After the long break, you repeat the pattern over and over again. I found myself to be more productive with my breaks.

When I took a long break, I would go for a quick 20-minute power nap. Just because of fatigue.

Zoom mode

Because my eyes are pretty much useless long-distance and staring on a screen with small text is hard for me, my laptop has a zoom-in mode where you hold a button down on the keyboard and scroll up or down to zoom in or out.

That’s it for now. 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 everyone 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 share my story and I would like to thank Joe for motivating me to get 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 the benefits of Bhangra and dancing. Please feel free to leave a comment and as always, if you buy something from Amazon, through the blog or click on an advert, 100% of the money that I get goes to charity.

Thanks and I shall see you soon.

2019 – A year in review

Hi there and welcome back to my blog, how are you? I hope that you are well. Today I’m going to talk about my year in review. 2019 has been a big year for me. I made a new year’s resolution last year of the following: to get a six-pack, to get the all-clear to go back to work form the hospital and to stay till the end of an Earls of Uke rehearsal. I will discuss at the end of this blog post if I did any of these.

Training for a 5k
I started the year on the treadmill with my slow couch to 5K. I’ve already talked about how I trained for my 5K. Here.I started off working on the couch to 10K

Doing the 5K
As before I’ve discussed already on my blog what happened on the blog. The link for that is here.

Ben passing away

Photo courtesy of Pass the Smile for Ben

On the same day as my 5K, a good friend lost his son Ben to a rare type of cancer, Rhabdomyosarcoma. Scott, Ben’s dad has set up a fund for the children’s hospital that Ben was being treated, under Ben’s name called “Pass the smile for Ben”. To donate, click here.

Designing my first website and developing my first website
I set one of my goals this year to go back to work, part-time. I was asked by my dad to redo his website for a couple of years, before my diagnosis. But I’d never got to it, I was either too busy from working or I was diagnosed. Now its 4 years after my diagnosis/radiotherapy and, I started off by designing the website. The design of the website wasn’t a strict design, just an overview of what the site looks like.

I will go into more detail about how I designed and built a website in the next blog post.

Leaving Carers Trust
Because I needed time to build my first website, I had to dedicate time to it. Plus I was getting bored at Carers Trust, I decided to leave. I will still thank them in every blog post that I do for giving me the confidence to go out and write this blog up.

Going to my last Brain Tumor Charity young adults meetup

2019 was also my last Brain Tumour charity young adult meetup. Because their age range is 18 – 30 and I turned 31 this year. I’ve made so many friends in these meetups. At my last meetup, we had a Christmas dinner, played Christmas games and I met former England Rugby Captain Lewis Moody. I’m going to miss going to these events but it just means that I’ll be more active in the Shine Young Cancer group.

Going gluten-free
Earlier this year, I went gluten-free. The reason for me going gluten-free is to stop the bloated from bread.

Push-ups and plank
About halfway through the year, I started doing push-ups and planking exercise. ( started doing these exercises every day but then my shoulders started to ache when I played the ukulele.
So I started doing them every other day.

Being in the mirror online
March this year, the Brain Tumour Charity picked me to write about my weight loss. It was really uplifting to be asked by them. Heres the link

Bhangra blaze
July this year, I’ve joined a bhangra fitness class called “Bhangra Blaze”. The class is run by the amazing Amarjit Gill. My only issue with the class is that it’s on a Tuesday which is the same day as my ukulele group meets up. So bhangra blaze has to take a back seat once every two weeks.

Eczema flaring back up again
Unfortunately, it’s not all good news. Because I used a shampoo that I shouldn’t have been using, my eczema has flared up. Totally my own doing. I used Alpecin shampoo because as a young lad who has a huge bald spot from radiotherapy, it was kinda disheartening when going to places with a hat on. Because my eczema has flared back up, I’ve not been on the treadmill for a while. I’m back on the floor bike now and I’m on it most days. When I was on the treadmill, I would do a 5K in 30 minutes.

 

Tablets review
I have started taking cabergoline for my high prolactin. Originally, it was once a week, now it’s once every two weeks. My Desmopressin tablet has gone down twice. At the start of the year, I was taking Desmopressin 100 x 3 and now I’m only taking 50 x 2 and 100 x 1. At the start of this year, my levothyroxine has gone down from 100 to 75.

Unfortunately, this was last year and this year, my body is paying for it. I’m not getting up on time, which makes my tablets late which makes my whole day late. I’m far too tired, this year than last year.

Goals overview
This time last year, I had set some goals for myself. To get a six-pack, to stay till the end of a ukulele practice, to get the all-clear from the hospital and to start training for a 5K. Well, the first two haven’t come true, no six-pack but I do have a flat stomach, which is something I couldn’t say before my diagnosis. And I haven’t managed to stay for an Earls of Uke rehearsal but I did manage to stay till the end of our outside performance in Ben’s memory. The other two are done and dusted, I did the 5K for Cancer Research and I do have the all-clear from the hospital to go back to work. I’m not currently back at work just yet but I am looking.

I now weigh in at 63kg which is lighter than before my diagnosis. My story was written up in the mirror online. Goals for next year, to do another 5K to raise money for all of my charities, to attempt to do the p90x, to either be working for someone or be working for myself and to start training for a 10K.

Speaking of charities, from this month onwards, I will not only be donating to Brain Tumour Support, I will be splitting the money equally to Brain Tumour Support, The Brain Tumour Charity, Brainwaves, Shine young cancer support, Headway, Mercia MS center, Carers `Trust, the Myton Hospice and Pass the smile for Ben. I know it’s a lot of charities but with some effort, I think that together, including my next run, we can raise £1000 in total.

 

That’s it for now. 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 everyone 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 share my story and I would like to thank Joe for motivating me to get 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 how I built and designed my first website in 4 years. Please feel free to leave a comment and as always, if you buy something from Amazon, through the blog or click on an advert, 100% of the money that I get goes to charity.

Thanks and I shall see you soon.

My mums diary – part 4

Hello there, and welcome back to my blog. How are you? I hope that you are well. Today’s blog post is part 4 of my mum’s diary. We are continuing on with my fluid blockage part of my> story.

Mr Edwards noticed that Arvin’s sugar was high and we are going to keep checking the levels of sugar. In the evening somebody from the special department came and explained where the fluid blockage was and that they are not going to operate but sort it out with the steroids. On the 16th we had a visit from Mr Edwards and Prof Brown and assured us that everything was on target and just waiting for another MRI.

Arvin didn’t recognize anyone but when his sister had asked him if he wanted anything from the shop, Arvin said ‘Wispa Gold’.(Authors note. This is one of the very few things that I remember in my ‘holiday’ in the hospital).

17/03/18 – They moved him to the main ward. I had the staff to make sure that his television was setup in the new ward as his uncle said that maybe a television would jog his memory. Whenever I was changing him, I’d noticed that he would get shy whenever I would be changing him.

18/03/16 – Dr’s on the ward did a blood test and they were just waiting for the results. Professor Brown wanted Arvin to stay the weekend but the ward doctor said there’s no need.

19/03/16 The male nurse gave him a shower and saw that he can dress himself. When he came out of the shower, I took him for a walk around the ward. The dr’s on the ward said that we could take him home, so we thanked everybody and brought him home. The doctors have already given him the tablets and told him when to take them.

I wrote on a sheet what tablets to take and when. He needed to be reminded of what tablet and when to take them.

We already had a bed downstairs and a settee, so Arvin slept on the bed. he tried to get up in the middle of the night but because of his weight gain, so much and so quickly, he slips off the bed. I helped him to stand up and go to the bathroom. Another time, he was in the bathtub and he could not get out of the tub. He needed help.

One day he was lying in bed and I will never forget the look he had. It was as if he was going to see another day or not. I remember telling him that we have been through the worst, you have to be strong, bring your inner strength out.

From those days to nowadays, fatigue, dizzy spells, and headaches are still there. I still do a lot of things for him. Shave him, cook for him, go on walks with him because of his eyesight, sort out his tablets for him so he knows where his tablets are every week. Sometimes he can’t see things that are right in front of him. I still have to carry items for him.

That’s it for now. 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 everyone 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 blog post will be my annual year in review.

Please feel free to leave a comment or leave an idea for a future blog post, and don’t forget, if you buy something through Amazon through the blog, or click on an advert, 100% of the money goes to Brain Tumor Support.
Thanks and I will see you soon.

My mums diary – part 3

Hi there and welcome back to my blog. How are you? I hope that you are well. Today I’m going to be talking about part 3 of my mum’s diary. This is where the fluid blockage happens.

On the 22nd of January around 3:30pm, we had a phone call from the hospital and Ian Edwards was on the phone and I spoke to him and he said that we were in the clear and we will call him for his 6 week checkup and if we don’t then you should make an appointment with Professor Brown secretary. I asked about Arvin’s tablets. He said keep it normal for a couple of weeks then cut 2mg tablet in half when that’s finished, then its finished. No more after that. He is still drinking the same, it’s a lot of water and still has dizzy spells.

25th January – his said that eyesight was getting better but on 26th he said that eyesight was cloudy. Arvin’s 6-week checkup is on March the 9th.

29th February – Arvin finished his steroids (tablets). 29th was his last day He was ok on the 1st of March normal dizzy spells and normal tiredness but on the 2nd of March he was very, very tired and lots more dizzy spells and not so hungry, but made him eat whatever he wanted to eat even if it meant eating chocolates. From the 2nd of March to the 10th March his health went downwards. On the 10th of March he couldn’t even stand up but he did try very hard but just couldn’t stand. So I called the oncology department in University Hospital and I told the lady what was happening and she said get him to the A&E as soon as possible, bring him in your car or call 999 and ask for an ambulance, but that could take upto 2 hours.

We got to A&E around 7pm and within half an hour, we were seen by the doctor. Checked his blood pressure and explained everything to him about Arvin’s history with brain tumours. He said as soon as a cubicle is empty we’ll take him in. Went to the cubicle seen by the nurses and found he had a high temperature, gave Arvin some liquid paracetamol to get his temperature down.

Then the young lady Dr came and checked his eyes and his flexibility and gave 4x2mg tablets (dex) and told us that this properly happened because we stopped the steroids too quickly. The same night we came to ward 12 where again he was seen by the doctor. Put him on a higher dose of steroids and needs an MRI scan. On the 11th of March a different doctor examined again and the only difference they said was to get an ultrasound on his stomach. When the doctor said “have you got any questions?” Arvin said, “how do you turn this into a table?” That supposed to be the bed. That’s not like Arvin. I know, I know something wasn’t right, by the evening, he didn’t even recognize me, that’s his mother. I had to tell him that I was his nurse. That was the most heartbreaking moment for me. On the same day we came to the oncology department, ward 35 room 33.

On the 12th of March, he still didn’t recognize me or anybody. He eats like he would eat normally,, he was still having a higher dose of steroids, still very tired and sleeping most of the day and night. For the first time, he wet the bed, which wasn’t his fault because the pad wasn’t put on properly.

On the 13th, he had an ultrasound done on his stomach. One doctor said have the stomach scan but the other doctor said there was no need, we had the scan done. He did wet the bed a few times and still very very tired sleepy.

On the 14th Ian Edwards came to check on Arvin and he was a bit surprised to see him there. and asked how he ended up in the hospital because as far as the tumours went everything was alright. Another lady came in and said that we are going to get an MRI done.

15th – the MRI was done and Ian Edwards came in and said the MRI was fine, there’s no problem with the tumour, it’s all gone but there is a fluid blockage in the brain but we aren’t going to operate it should be sorted with the steroids but we will keep an eye on him. He also said that somebody from the special department will come and explain to you about this. Ian Edwards also asked if Arvin ever fell down and banged his head which Arvin did when he fell down the stairs.

That’s it for now. 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.

On a personal note, I’ve stopped volunteering at Carers Trust because of my personal financial situation will not allow me to volunteer. So I’m looking for part-time work, if anybody can help, with work in my field, feel free to leave a comment. .

The next blog post we will be continuing more about my fluid blockage.

Please feel free to leave a comment or leave an idea for a future blog post, and don’t forget, if you buy something through Amazon through the blog, or click on an advert, 100% of the money goes to Brain Tumor Support.

Thanks and I will see you soon.