Category Archives: Brain tumour

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.

My mums diary – part 2

Hi everyone and welcome back to my blog. How are you? I hope that you are well. Today’s blog post is part two of my mum’s diary covering the final part of radiotherapy and the reason of my fluid blockage.

On the 26th December, Arvin was ok. He was getting up to fill the bath up and sit and relax a bit but when he got to the top of the stairs and had a dizzy spell and he fell back and went all the way down. So that night me and Arvin slept downstairs but he did have a mild headache. The next two days, he was alright.

On the 29th December, we went for his radiotherapy, Arvin told the person who was going to give him his treatment about him falling down the stairs but she didn’t think of anything wrong. After the treatment I wanted to ask about the tablets, if I can order some more, she told me that Arvin’s appointment been changed for the following day, from 9:45am to 3:15pm and that Professor Brown wanted to see Arvin.

On the 30th, we went to see Professor Brown after the appointment, thats after radiotherapy. Professor Brown reassured us that everything was going just right and the stronger dosage of radiotherapy will start on the 4th January and that they will be contracting on the larger tumour.and then we’ll do a blood test.

On January 4th we went to the H3 radiotherapy side. The radiation was much more than A1. Instead of 10 seconds, it was more than 30 seconds about 3 times and also we had a blood test. Blood test is going to be done every week for the next 4 weeks.

On the 5th January, the radiation was for 60+ seconds then 30 seconds and they changed position and another 30 seconds.The second day Arvin said that his legs were a bit shaky.

On the 6th, we were waiting in the waiting room and nurse Ian Edwards came and said he would like to speak to us. He told us that the treatment is going good and the blood tests were good. He said that HGC was 144 which is quite high but its gone down quite a lot. He then told us that this type of tumours started to develop in the womb. Although I had no problem with the pregnancy, it was tough living there. (Author’s note my mum had lost a child before I was born). Ian asked us if there are any questions that we would like to ask, so I asked why does Arvin feel so thirsty. Ian said that we will do a blood test.

On the 7th, Arvin had his blood test done and also had earlier radiothphry. 8th normal radiotherapy, 30 seconds, 30 seconds, 30.

On the 11th of January, I had to go with Arveena to the clinic to see the dentist. So Arvin had to go on his own for his radiotherapy. We met again when Arvin had a blood test done.12th-13th normal radiotherapy and on the 13th, he had a scan as well and he was told that his blood test results were normal.

On his last appointment which was on 21st January, the computers were down. Eventually he did have his treatment. He wanted to see the Dr but he was very busy. So the girl who treated Arvin told us that the doctor would call us. The Dr’s call came on the next day on the 22nd of January and I answered the phone and Ian Edwards said that Arvin was cleared from his brain tumours.

I’ll  never forget that me, Arvin and sister Arveena just hugged each other and cried and thanked God for everything.

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, before my diagnosis, I was a front end web developer. Now in the first time in 4 years, I’ve built a website. It’s my dads website. Here’s the link.https://www.1stchoicecov.co.uk/

The next blog post will be 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.

My mums diary – part one

Hi everyone, how are you? I hope that you are well. The next few blog posts are going to be notes from my mum. Theses are her personal thoughts but she has allowed me to use her notes for my blog. So thanks mum! This blog post is notes from when I was diagnosed and start of my radiotherapy.

Germinoma
Inside the brain
Radiotherapy on the whole head
Bigger dose for the larger tumor
Has not spread across the spine
Third ventricle

30 – two – three weeks
50 – to the larger tumour

Too dangerous for operation

Mask made on wednesday
C.T Scan
5 days a week
Redness – tiredness
Arden Centre. Change the tablet to stronger dosage. Don’t start until start treatment

They will check him every 3 months and have a blood test to see how he’s doing.

Our next visit to the hospital was the 2nd of December, when the mask was made and had another scan (MRI). We were originally told that the treatment would start on the 29th December. A couple of days later we received a phone call from the hospital that the treatment was going to start on the 8th December and we would be given all of the other dates for the rest of the treatment.

On the 8th, mum and Arvin went to the hospital when we met by Jhoti who explained everything as Dr. Brown had. Jhoti gave us the whole list of the treatments, the days and times. By this time the higher dosage was introduced to Arvin by Dr Brown.

On the 8th of December was Arvin’s first radiotherapy treatment. They were people in the Radiotherapy department. Two people told Arvin to lie on the big table, adjusted Arvin’s head in the right position and they put the mask on him to keep him in the right position all the time and so Arvin’s head does not move. One of the people put masking tape on the right positions on the mask.

Arvin was lying down on the bed and I was told that everybody had to go out of the room. I say in the waiting room, while they gave him radiation to Arvin’s head for about 10 – 12 seconds then two people would go into the room where Arvin was lying, come out, more radiation for another 10 – 12 seconds.

When we came home, Arvin was complaining about how his head hurts. So I rang up the hospital to see if its ok to give him some paracetamol. So I gave him one tablet.

A few days into radiotherapy, Arvin was saying that he got constipation problem.I bought senokot from the chemist and he is OK but not all of the time. He’s been taking senokot every night.

On December 23rd, we went to see Arvin’s GP, Dr Kasotiry. The doctor checked his blood pressure (normal) and asked how his treatment is going on. Showed him the sheet with all of the details of treatment. Told the doctor about his constipation and his upset stomach. The doctor gave his some .laxatives but we decided to stick with the senokot. The doctor also told Arvin to have a blood test.

On 24th December, we had a blood test done. On the 25th of December, late evening, Arvin had noticed that he was losing his hair by the handful.

hat’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.

The next blog post will be more about my radiotherapy and the start of 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.

How I trained for my 5K

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 trained for my 5K. Now it wasn’t easy training, but I still managed to do it. Here’s how.

  • Couch to 5K repeatedly
  • Energy balls
  • A little something sweet
  • Buy confiable shoes and break them in
  • Carbs in the night before, fruit in the morning
  • Meditation
  • Coconut oil and Elemis cream
  • Have fun

Couch to 5K repeatedly
When I first started training for a 5K, I started off on a slow speed, my current walking speed. The idea of the couch to 5K is you start off majority walking and slowly build up running. By the end of the 9 week course, you should be running solidly for 30 minutes. Well that’s the idea. What I did was, my running speed was just walking. Once I’ve finished the first round, my next round walking pace was my last rounds running pace. I repeated it twice and I am currently doing a third round of the couch to 5K app.

Energy balls
As someone who suffers from fatigue, theses energy balls are a life send when it comes to training. I like to have half of an energy ball before going upstairs and the other half, just before going on the treadmill. You can mix up what nuts to use but I like to use cashews and almonds with some medjool dates.

A little something sweet.
I get my mum to put agar agar syrip i my energy balls. It gives me a short boost of energy that I need to have when I go on the treadmill. If there are no energy balls, I like to have to have a piece of homemade chocolate.

Buy comfortable shoes and break them in
When I first started training, the first thing that I bought was some running shoes for my local sports direct. I bought a cheap pair of trainers with some extra insoles. When I bought them, the first thing that I did was use them on the treadmill. Because I struggle with tying up my laces, I got these slip on laces from Amazon.

Carbs the night before, fruit in the morning
When I spoke to my old work friend Joe, that I was doing a 5K, the first thing he told me to do was to load up on carbohydrates the night before and have a load of fruit in the morning A good few years ago, Joe ran the Great North Run with zero training. I can’t remember what his time was but I remember that he couldn’t come into work the next day.. Carbohydrates are a slow burning energy releaser. It takes time to get all of the energy out of you, so that’s why he told me to load up on carbohydrates. Fruit in the morning is the same reason why I like to have something sweet before going on the treadmill. It gives you that power boost that you need to get up and going.

Meditation
Now I know what you are thinking, how can meditation help me do a 5K? The headspace app that I’ve been using for nearly three years, has a set of meditation called training. It goes through different points in training and things to do different. Like brushing your teeth with your less dominant hand.

Coconut oil and Elemis Cream
Every night, I get my mum to rub coconut oil and Elemis Instant Refreshing Gel, Muscle Reviving Body Gel, 150 ml on my hamstrings. The reason is that because I’m taking hydrocortisone, I get stiff legs, especially after going on the treadmill. Every time that I go on the treadmill, I like to put coconut oil on my hamstrings, just to loosen them up.

Have fun
On my couch to 5K app, by week two, Jo Whiley says to have fun doing it.. What she does is repeat the words, “I love running”. Everytime that I come off the treadmill, I always tell my mum that I had fun on the treadmill. Yes it can sometimes be hard, especially on Fridays, when I volunteer at Carers Trust and my fatigue kicks in, but afterwards I do get the runner’s high, I feel so elated that I’ve done something good and healthy.

Recently, I’ve joined two Facebook groups. Tumour Trekkers and Couch to 5K. I shared my story and pictures of old me and current  me and within 24 hours, I’ve got over 150 likes from Couch to 5K group and I got some lovely comments from Tumour Trekkers. It’s nice that my story can touch so many people.

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.

The next few blog posts, are going to be a little different. Ever since my diagnosis, my mum has kept a notebook with notes from the hospital. It covers pretty much everything, from my diagnosis, to the fluid blockage and everything in between.

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

Thanks and I will see you soon

What happened on my first 5K

Hi there and welcome back to my blog. How are you? I hope that you are well. Today’s blog post is about what happened on my 5K. Next month, I will go into detail about how I did it.

The day started off quite well, I woke up full of energy and excitement. I had my breakfast, had my morning tablets, and got ready to go.The race was in Stoneleigh Park in Coventry, which was a short 15 minute drive for my dad. My dad pulled into the car park and dropped me, my mum and sister off and we had to walk quite far from the car park. I walked a little bit faster because I had to get my number plate and my back message papers.

At about 10:30, I had my morning fruit and I was ready. My sister said to me before I left, “Quitters never win, winners ever quit!”. This was really helpful, later on.  I got into the crowd and a guy on a stage told us to talk to the person next to us. I spoke to a mum who was walking with her child in memory of her father and her grandmother. I told them why I was running and they were really impressed. I showed this woman a picture of fat old me, after my fluid blockage and she said, “you look like a different person!”

Before the race started, the guy on stage bought on a women from some gym and got us to do some stretches and dances. After that, a doctor came up and started talking about prostate cancer.

Once the race began, I put my music on, put on my runkeeper app, put my watch on workout mode and  off I went. I walked far too quickly for the first 15 minutes and afterwards, I slowed right down. I then saw an old woman walking with a young woman, hand in hand, and that really motivated me.

A gentleman running the race, ran past me, tapped me on the shoulder  and congratulated me on my progress. I yelled back at him, thanks. Later on, a different old woman walking with a young child told me “well done, keep going”. I said to her, thanks and you too.

By about 3K, I knew that I was over halfway, so I had a chocolate bar, that I bought from a vegan festival, the previous week. By 3.5K, my headphones died. So I was chanting to myself, “Quitters never win, winners never quit!. By 4K, I knew that the majority of the race was over. Towards the end, I started to sprint for a short while,  then I saw the magical 5K sign, which was before the finish line. I slowed down, took a couple of sips of water with coconut sugar in it and stopped all of my devices.

When I crossed the finish line, there was a bell. I rang that bell a couple of times, yelled out thank you, to the crowd who were saying “Well done”.  I saw my mum and sister at the finish line and I was laughing when I saw them. I hugged my mum and my sister had to remind me to get my medal. After that, someone from Cancer Research asked me a few questions about me. I gave her my email address and phone number.

Afterwards, we had to put our back message onto a wall, using our safety pins. In which my mum did for me because I was far too tired

I was starving so I started eating a falafel wrap that my mum made before we came out. Then i rang my dad to come pick us up, and we had to walk back to the car park. An older gentleman walked passed me by the car park and made a funny comment about how this was worse then the race.

The weather that day was quite cool, better than the previous day, which was the hottest day of the year so far (until this past week, when it was over 30 degrees). I had bought out some ice cold water with coconut sugar to give me a little energy boost and to cool me off, but I didn’t need it. Only took a little sip about the 3.5K mark.

I can honestly say that I had fun on my first 5K. I think that I’ve got the running bug. I’ve already back on the treadmill again after taking a week off it, and I’m going faster than last time. I’ve not entered another 5K yet but I would like to do one more before this year ends. My time was 63 minutes, which is slightly quicker than my aunt, who ran it without any training with a short notice.

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.

Next time, I’m going to talk about how I trained for this 5K.

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 goes to Brain Tumour Support.

Thanks and I will see you soon