Category Archives: Brain tumour

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

Recipes that I like to have

Hi there and welcome back to my blog, how are you? I hope that you are well. Today I’m going to talk about recipes that I like to make and enjoy. I became a vegetarian back in 2011, when I finished reading “Eat, Pray, Love” just after christmas. I became a vegan in 2017, when my milk allergy came back. Now even with all of my allergies, I still get plenty of protein to help me with my weight loss and muscle gain. Here’s how.

  • Avocados
  • lentils
  • Nuts
  • Mushrooms
  • Fruit and vegetables

Avocados
Recently, I get my mum to make some avocado hummus. It’s goes great with anything. On chips, salad, curry, anything. Avocados are actually used in a refined sugar free cacao cake. Here’s the recipe, modified from wearesovegan.com. The only things that we did different to this was to add fruit sugar and added agar agar syrup instead of maple syrup and normal sugar.

Me and my mum made this cake this cake for the Coventry Brain Tumour Support group meeting back in June 2018 and everybody who tried it, loved it.

Lentils
As an indian, lentils is pretty much a staple food in my diet. I practically have this everyday. However, you can’t have avocado hummus with it, because it has too much protein and it will hurt your stomach. Here’s the basic recipe for lentils.

  • One cup of lentils (any type of lentils will do)
  • Four cups of water
  • One tsp of cumin seeds
  • One tsp of ginger paste
  • One tsp of garlic paste
  • A pinch of ground chillies
  • Half a tsp of turmeric
  • One tbsp of tomato puree
  • Salt to taste

First of all, wash and rinse the lentils and then put water in the lentils and put to boil

Get a frying pan and put the cumin seeds, turmeric, tomato puree and salt with a little bit pf oil and fry them off a little until the cumin seeds start cracking. Then put the lot into the lentils and let it boil until its starts to thicken. Depending on the lentils , this time could be between ½ hour to an hour and a half. Then serve with brown rice, basmati rice or roti.

Nuts
If I’m starving and I need an energy boost, we have these cacao covered nuts as a snack. Here’s how to make them. This recipe is from forkandbeans.com.

Make the sauce as described in the link.

Dry roast the nuts until they have a crunch to them,

Place the nuts on a baking tray, lined with greaseproof paper and pour half of the cacao coconut oil mixture onto it. Flip the nuts over and pour the other half ohto the nuts.

Place the tray into the fridge for a couple of hours. Once hardened, break apart the giant cacao bar up. You can use the extra bits of cacao bar as a sweet treat.

Mushrooms
Whenever I get giant portobello mushrooms, I like to make this portobello mushroom marinated in balsamic vinegar. It’s really simple to make. Here’s the link.

Fruit and vegetables
Every morning, before breakfast, I like to have some dry roasted nuts, two apples, a pear, a nectarine, some red grapes, some blueberries and two bananas. Throughout the day, I’m drinking a mixture of pineapple, apple and mango juice infused with strawberries, blueberries, blackberries, red berries and raspberries. At the end of the day, I like to have an apple with some dry roasted nuts. The reason why I’m eating all that fruit in the morning is because, ever since using the hyperbaric oxygen chamber, I get a headache from all of the tablets if I take them on an empty stomach. That’s why before I take my morning hydro cortisone tablet, I like to have the dry nuts. The second reason is, because I suffer from hypothyroidism, it’s hard for me to go for a number two, first thing in the morning.

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 did on the 5K and talk about the whole day in general. 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

How to make friends

Hi there and welcome back to my blog. How are you? I hope that you are well Before I start on my blog post, I just want to let you know, a couples of things about my health status. The hospital have lowered my desmopressin to 100,50100. I was taking caberlongie once a week, but the hospital have also lowered that dosage to once every two weeks. I’ve also adopted a gluten free diet and because of this and the fact that it’s hard to get gluten free vegan bread with no soy, my breakfast is now gluten free porridge with peanut butter. Now, back to our original topic. Today I’m going to talk about how to make friends. Now I know that I’ve told you on this blog, that before I started my radiotherapy, I had lunch with my best friend, friends since nursery. I told him about my, and diagnosis that was the last time that he spoke to me.

I know that it can be sad to lose a best friend but, that’s the past. Now it’s the present and I have more friends than ever before. Here’s how I did it.

  • Join a local cancer/brain tumour group`
  • Volunteer
  • Find a hobby and join a group
  • Go out and have fun

Join a local cancer/brain tumour group
When I was diagnosed back in 2015, I didn’t know of cancer groups, let alone brain tumour groups. Every month, me and mum go along to our monthly Brain Tumour Support and our local MacMillans since March 2017. We mostly talk about life in general, drink tea and eat cake.

There are also online groups as well. At the start of 2018, I joined a Facebook group called Brain Tumours with Humour. They are a group who share stories about their diagnosis and have a laugh about it. I’m always sharing posts to this group and I always get responses from members of the group. There is of course, the Brain Tumour Support and MacMillans Facebook groups and pages.

Last September, after I turned 30, I went along to a Young Adults Brain Tumour Charity with my uncle. I met many people my age, going through the same situation as myself. That December, I also went to a Shine Young Cancer Christmas dinner with my uncle. They are more local and met more frequently than Young adults Brain Tumour Charity but their cancer queries are more general.

Volunteer
Back in August 2017, when I went to Carers Trust, looking for a self confidence building course. Colin, an employer at Carers Trust, said why don’t you volunteer here? So on that day, I started volunteering at Carers Trust and on that day, I got several friends.

Find a hobby and join a group
As I’ve said before, I started playing the ukulele back in 2012, but I stopped when I was diagnosed, and I only started playing after my first Brain Tumour Support meeting. Before my diagnosis, after work, I would go upstairs and sit on my own and play the ukulele. Since April last year, I’ve joined a ukulele group called the Earls of Uke. They have been going for a couple of years before I joined the group. I made a couple of friends from that group. And here are the videos from last months singalong.

Go out and have fun
Back in last April, one of my flatmates from freshers was getting married. She invited the whole flat and a couple of my friend came. When I got home, my mum asked me “how was it?” I told her “ I have friends again”. The next day, when I told my aunt, when she asked me how the wedding was, I told her it’s nice to have friends again.

It does make me sad to have lost a best friend, from this disease, even though he didn’t get the brain tumours, I did. Unfortunately, this is the life that we have been dealt with and we have to own it and control it.

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.

And don’t forget, that I’m running a 5K for Cancer Research this month. To donate, click here.

Next time, I’m going to share some recipes of some food items that I regularly have. 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.

How I improved my handwriting

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 improved my handwriting. As a child, as an adult and after radiotherapy, I’ve always had messy handwriting. Now after over 600 days of practicing, my handwriting has improved. So how did I do it?

  • Go back to basics
  • Learn how to hold a pen
  • Practice, practice, practice
  • Try some hand exercises
  • Calligraphy
  • Have someone check over it

Go back to basics
When i decided to improve my handwriting, I bought these books for key stage one and key stage two children. I know that it can be embarrassing to be using these books, but we’ve been through a lot. We have to take one step back to go two steps forward in everything that we do. I went through both of these books and then I started writing on lined paper.

Learn how to hold a pen
When I was in school, my teachers would tell me that I was holding a pen wrong. I would grab a pen with my whole fist. Theses days, I hold a pen with my thumb and index finger while the pen rests on my middle finger. It took me a while to get used to doing this.

Practice, practice, practice
I know that I keep going on about this but I’ve been using an iOS app called Productive. It’s motivating yourself to do something everyday, I write up my blog posts on paper first. Before I started writing up my blog posts, I would write song lyrics. Before that, I would write up “The quick brown fox jumps over the lazy dog”. It’s a sentence that uses every letter.

Try some hand exercises
I’ve been using baoding balls for over 600 days now. They have really helped me with my hand strength, You don’t have do theses, you can do dot-to-dot, word searches, knitting, playing a musical instrument, cooking pr just about anything that uses your hands.

Calligraphy
Recently, I’ve started practicing calligraphy. I’m no good at any free hand calligraphy, so that’s why I use these worksheets that I found online. It’s worth printing off extra copies so you can practice over and over again.

When it comes to pens, use whatever you feel comfortable. For me I started off with these fountain pens but then I moved up to these brush pens.

Have someone check over your handwriting
When I first writing on lined paper, at the end of me writing, I would get my mum to check if she could read it. It’s really helpful to get someone to look over it they give an honest opinion, it will help you improve in everything that you do, even when it comes to my ukulele playing and my balance.

When I started to weigh myself every week, I would put my hand on my mums shoulder, when I would get on the scales. But this time last year, I was able to get on the scale without holding onto anything, And my mum, was the first person was the first person to tell me that I didn’t grab onto anything or anyone.

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.

And don’t forget that I’m running a 5K for Cancer Research next month. To donate, click here.

The next time, I will be discussing “how to make friends”.

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

Thanks and I hope to see you soon.

How I started playing the ukulele again

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 how I started playing the ukulele again.

As I’ve mentioned in a couple of blog posts, I started playing the ukulele back in 2012 but stopped when I was diagnosed.

I started playing again after my first Brain Tumour Support meeting after I spoke to Sam, who said that I needed to sing and be happy. I only sing when I’m playing the ukulele.

Two years later and I’ve done two solo performances, joined a ukulele group and done two group performances. Last year, I joined a ukulele group called the Earls Of Uke. The Earls meet up every two weeks. The group are very considerate about my fatigue problems, although I’m slowly staying longer. I actually joined the group two weeks before their big performance at the Earlsdon Folk Festival back in May 2018. Here are a couple of videos of myself and the rest of the Earls of Uke.

So how was I able to do it? Here’s what I did.

    • Relearn every song that I used to play
    • Watch videos
    • Listen to music
    • Practice, practice, practice
    • Join a group

Relearn every song that I used to play
I’m not sure because of the gap that I took or because of my “holiday” back in 2016, when I got a fluid blockage in my brain, and I had forgotten everything about the ukulele. That’s why I started with the basics.

Watch videos
When I first started playing the ukulele back in 2012, I watched a Youtube channel called “the Ukulele teacher” version of “Somewhere Over the Rainbow” by Israel Kamakawiwo’ole because it was one of the songs that I started playing on my own, without watching the video. And here’s a video of me playing and singing “Somewhere over the Rainbow” and “Viva la Vida” at Feburary 2017 Brain Tumour Support meeting.

Practice, practice, practice
As I’ve said this in a couple of previous blog posts, back in February 2017, I had lunch with an old work colleague Joe. He had showed me an Android app called Habit Hub. Habit Hub allows the user to set daily goals and it tracks how often you hit these goals. After looking in the iOS store for something familiar called Productive, The number of days that I’ve been playing the ukulele for over 600 days now.

Join a group
As I’ve mentioned in this post, I’ve joined a ukulele group called the Earls of Uke. I had joined this group after a google search for ukulele groups based in Coventry. Here’s a couple of videos from the Festiveukes concert that I took part last December.

I do feel that playing the ukulele again has helped me get better with my recovery. It’s reminded me of what I was before my diagnosis. And playing, singing and listening to music, justs helps with recovery.

If you would like to see myself and the rest of the Earls of Uke play, we are having a gig at the Royal Oak, as part of the Earlsdon Fringe festival on 30th April in The Royal Oak at 22 Earlsdon Street, CV5 6EJ Coventry. It starts at 8pm.

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. And I would like to thank Sam from the Coventry Brain Tumour Support group who told me that I should sing.And I would like to thank Scott, Andy, Nigel and the rest of the Earls of Uke for being there when I needed to be lifted up.

I also want to thank Sarah and Carol from the Brain Tumour charity, for nomitated me to be featured in the Mirror Online about my weight loss. In case you have not seen it, here’s the link.

One small note, I’ve entered the Coventry Cancer Research race for life 5K. It’s happening on the 30th June in: Stoneleigh Park, Stoneleigh Road. I might not be able to do the whole 5K, but I will try my hardest to do so. If you would like to donate the link is here.

The next time, I’m going to talk about is how I improved my handwriting. Please feel free to leave a comment, and as always, if you buy something from Amazon through my blog, or click on an advert, 100% of the money that I get goes to Brain Tumour Support.

Thanks and I will see you soon

How I handled my hypothyroidism

Hi there and welcome back to my blog, how are you? I hope that you are well. Today I’m going to talk about hypothyroidism. Hypothyroidism is what happens when you get a tumour on the pituitary gland. This means that its quite hard to lose weight because your metabolic system is weakened.

I started taking Levothyroxine back in December 2016 and that’s when I decided to lose weight. Two years later, I’m 45KG lighter. I’ve already discussed how I lost weight in this blog, this post is about hypothyroidism.

So what happens when you suffer from hypothyroidism,

  1. Constantly tired
  2. Hair loss
  3. Constipation
  4. Cracked skin

Constantly tired
As I’ve mentioned in an earlier blog post, I get tired easily. As I’ve mentioned before in an earlier blog post, I like to use these fig energy balls to give me a shot of energy. I also like to eat bananas if I need a extra shot of energy.

Hair loss
Now I know that this is standard for people with brain tumours, to get hair loss but with me, my hair hasn’t grown back, and it’s been over three years since radiotherapy. There’s not much else that I can offer. Before my diagnosis, I was using Alpecin Caffeinated shampoo and that made my hair grow quite quickly. If you have been given the all clear by your consultant, feel free to try it.

Constipation
As I’ve discussed in my first blog post, during radiotherapy, I was getting constipated. I don’t suffer from this anymore. During radiotherapy, I would take a Senecol before going to bed. Theses days, I like to eat an apple before taking my morning hydrocortisone and after taking the hydrocortisone, I like to eat a lot of fruit and this helps me with the first movement of the day.

Cracked skin
As a child who suffers from eczema, I know how to deal with it. I’ve had eczema since I was 5 months old, I’m quite experienced with cracked, dry skin. Over the years, I’ve experimented with different creams and lotions. For me I like to use O’Keefs allover cream on my feet and legs. I can’t go for a bath or shower without this on me before and afterwards.

Now I’m going to talk about the things that you can eat to improve Hypothyroidism. This is really simply two items, coconut oil and avocados.

Coconut oil
Coconut oil is an amazing ingredient. It can be used for frying and massages. As I’ve said in my last blog post, what I like to do it melt some coconut oil, mixed it with cacao powder, some agar syrup, vanilla essence, roasted nuts and a pinch of salt. Mix it all up and put it in the fridge for about twenty minutes. I like to have theses as a snack or as an energy boost.

Avocados
I try to eat guacamole with every meal. Including breakfast. It’s even good as a dessert either as part of a cake or on it’s own with some fruit sugar, cacao powder and some peanut butter (either smooth or crunchy) and you have got yourself a nice little moose.

I will update this blog with a new blog post if my research, I find something else that helps with hypothyroidism.

To recap on the items that can help you

  • Coconut oil (for eating, cooking and massage)
  • Avocados (either as guacamole or in a desert)

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.

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

The next time I will talk to you, I will talk about how I started playing the ukulele again.

Thanks and I hope to see you soon.

Further detail into my weight loss

Hi there and welcome back to my blog. How are you? I hope that you are well. Today I’m going to talk about an update about my weight loss. This time two years ago, I weighed in at 114KG, after my “holiday” in the hospital. This time last year, I weighed in at 79KG. Today, I weighed 69KG. Here’s the obligatory before and after pictures.

So how did I do it? Here’s how.

  1. Coconut oil
  2. Avocados
  3. Pineapple and apple juice
  4. Stir fries
  5. Vegan Protein
  6. Lift weights
  7. Ab swing
  8. Walking

Coconut oil

Coconut oil is used to help the thyroid. The thyroid is the part of the body that controls the metabolic system. I like to melt it, add in some agar syrup, some cacao powder and dry roasted nuts. Mix all of them up and stick it in the fridge, for about an hour and then chop up all of the pieces and eat as a snack.

Avocados

With most of my meals, `i like to add homemade guacamole to everything. Avocados help with hypothyroidism.

Pineapple and apple juice

This is something that I’ve started doing since April 2018. At lunchtime and dinner, I like to drink pineapple juice mixed with apple juice, sparkling water and have the whole thing infused with strawberries, blueberries and raspberries. It’s kinda healthy homemade Fanta, it doesn’t have to be fresh juice either.

Stir fries

Recently, for my dinner, I’ve been having stir fries. Served with homemade chickpea tofu and these Eat Water – Slim Noodles 270g (Pack of 10) that you can get through Amazon. It fills you up quite well and it gives you enough energy to go throughout the rest of your day.

Vegan Protein

I eat a lot of dhal (lentils). I became a vegetarian back in 2011 when I finished reading “Eat, Prey, Love” just after Christmas 2010. I became a vegan back in August last year when I worked out that all milk products made me go to the bathroom. I don’t eat tofu or soy because of my allergies.

So all I eat are fruit, vegetables, stir fry, lentils with either rice or millet chapati or a falafel wrap. Unless I decide to have a cheat meal and then I go for chips and a scallop at my local chip shop.

Lift weights

It’s a well known fact that muscle burns fat. That’s why in January last year, when the Physio at the Myton Hospice, I started to lift weights. I started off lifting 5KG, 5 times in two different ways. Now I;m lifting 7,5KG, 12 times in four different ways.

Ab swing

I think that everyone would like to get a six pack abs. As I’ve I said on Facebook, one of my new year’s resolutions, is to get a six pack. So back in January, about the same time that I started to lift weights, I got the ab swing out. Originally I was doing both the ab swing and lifting weights everyday, but back in March, I decided to alternate between the two.

As I mentioned before, I was doing the P90X after freshers at university. That’s when I started to lift weights and started doing ab exercises. I didn’t use the ab swing back then, I did a bunch of stuff on the floor.

Walking

As I’ve mentioned in an earlier blog post, I like to do 10,000 steps in a day, This number is stable and not moving. This is because it’s quite high for someone in my condition. Although I do always doing more, in fact, last year when myself, my mum, my sister and my uncle, went to Weston Super Mare as part of the MacMillans Joined in Cancer group, I did over 20,000 steps that day.

10,000 steps, is about 700 active calories, (calculated by my Apple Watch), which once again is quite high for someone in my condition and the fact that my calorie input is only 1700 on a bad day and I still suffer from fatigue. That’s why I either like to take a nap after my walk or take a homemade energy ball before.

I recently set a couple of goals as part of my new year’s resolution. They are to get a six pack, to get the all clear from the hospital to go back to work, to stay till the end of a Earls of Uke rehearsal and to start training for a 5K. Only time will tell if I could accomplish all of this. I will keep you updated.

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.

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

The next time I will talk to you, I will talk about hypothyroidism and how I managed the effects of it.

Thanks and I hope to see you soon.