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Mummy and Raj

Life after losing my superhero

Some storms DO last forever🌩

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I just saw a quote about dont worry, no storm lasts forever, but it truly feels like the storm i’m in will never shift. Yea I can smile and laugh but there is a sadness deep in my soul. It will always be there. Raj was my world. It’s like someone took my best friend away from me.

It’s been a while since I posted a blog update. I have taken some time to contemplate what it is I am doing. When I first started writing this blog, I found myself thinking hmmmm who would actually want to read what i’m thinking! I did however discover, that many people did want to know my thoughts and I have had some lovely comments from people who read my blog who say my writing has helped them in their own often different situations. One of my recent thoughts and suggestions from others has been whether I should write a book. Again I find myself thinking who would want to read my book! Several people have suggested I do this. I have also been seeing 2 counselors following Raj’s death. One is via the NHS and the other is through a charity that help families with life limiting illnesses. The NHS appointments are always at the hospital and the same time weekly. The charity appointments are as and when I need them. At Costa or at my house. I can text my counselor at 11pm and she will reply. She said’ grief is not 9-5′, which is so true and it’s lovely to have that support. They both have said it feels like I am on the cusp of unlocking something creative and it is coming quite organically. The charity counselor has said she feels I should also look into motivational speaking as she thinks I have a way of speaking which resonates with people and draws you in. All such lovely words but I wouldn’t even know where to start! I wouldn’t even know where to start with writing a book, so I have spent some time thinking should I do this and how?

The last few weeks have felt really rough. I have struggled a lot to keep focused and just try and motivate myself to just ‘do life‘ if i’m honest. I can be ready to walk out of the door, and I suddenly find myself sat there sucked into my phone. Looking at pictures of Raj. Next thing I know, It’s 20 minutes later and I’m now so sad. I do things to try and keep myself busy. I try and go swimming, but even doing that Raj is on my mind. I can go get my nails done and Raj is on my mind. How can I not be thinking about the person who is most important to me in the world all the time?

 

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There are a few things I am doing to fill my time. I have signed up to do the Twilight Charity Walk with The Brain Tumour Charity on the 14th October. If you can spare some cash, please sponsor me! https://www.justgiving.com/fundraising/rajvir

I am also involved in a event, where we will receive funds for an afternoon tea event for women affected by cancer, directly or indirectly.

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Finally, I secured a date for a memorial event for Raj in May 2019. It will be held at the Thistle hotel in Heathrow and will be a dinner event for 350 guests. I am really excited to be holding an event that will remember Raj and also raise vital funds. So much more research is needed into brain tumours. Being told there are no more treatments is the most heart wrenching discussion you can have with a doctor. I am welcoming any help with event. Whether it be raffle prizes or help selling tickets, please get in touch! I would appreciate any help I can get. This event will be about Raj though and I cant wait to share how amazing my monkey was with all those who attend.

What is also weighing really hard on me, is the fact it’s Raj’s birthday in December. I would have been ordering bits and pieces for his birthday already. Discussing what theme he wanted for his party. My baby would have been 9 this year. Such a big boy. Gosh, I miss him so bad. I don’t laugh like I used to. ALL I did was laugh with Raj. I miss the person I used to be when Raj was here. I am not the same person.I really do hope, eventually I may get back some of that happiness I felt. I appreciate the people around me so much though. My friends, my family and loved ones. They are so patient with me, show me masses of support and try and keep me smiling. I love them for that!

The only thing I do know is, I do still feel Raj. I feel his connection. He is in my heart. He always will be. My counselor keeps telling me, to give myself some credit. It is still early days and I am doing well. Some days I just don’t know what to feel. Some days it feels like I’m just existing.

I do try and be an optimistic person though…so will sign off with a positive. It’s FRIDAY! 2 days rest from work. Oh and I need a holiday, so may just have to book something over the weekend! Have a beautiful and blessed weekend all. Enjoy time with your loved ones. Thanks for reading  😊❤❤❤

 

 

Months of bliss

April 2013 onwards:

In April 2013 we held our first ever dinner and dance for The Raj Rana Fund. 100% of all funds we raised went towards research with The Brain Tumour Charity. It was an amazing event and we sold over 320 tickets. It was a night full of dancing, food and lots of smiles. It was a great way to mark the end of Raj’s treatment.

Following Raj’s chemo we started to return to normal. Raj was doing amazingly well. It was as if nothing had even happened. It could all of been a bad nightmare.

While we had been away in hospital my mum and dad had been back and forth to my house. Taking care of things. When we came out of hospital dad said “your house is too small”! He told us he was investing £50k into my house to extend it! Straight into the deep end. We started a building project. Raj and I were spending most days living with mum and dad as the project went on. When it was done though, my lil man loved his new house! There was lots of space to run around in and make a mess in now!

Things were fab. Raj turned 4 and he went into reception at school. I hear all these stories about how hard it was to leave your child at school. How their kids cried so much. Not Raj. I took him in and Im pretty sure he didnt even notice where I was. He walked off and started playing. I dont even remember him acknowledging me as I said bye and left 🤣. It was a very proud moment. I know other parents whose children didnt get this precious moment. People take these small things for granted. You hear parents moan about the school run etc. Honestly, there are parents out there that long for these things. Never ever take them for granted.

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Raj was a majorly happy child. He just enjoyed laughing and giggling. His giggle was infectcious. Raj was loving school. He made new friends so easily. Raj’s cousins used to attend the same school. It was so easy, me or Raj’s grandad would grab 4 of the boys together. Life was just as it should of been. I was working away as normal. Raj was at school.

We were having scans every 4 months. All coming back as clean. No tumour 😊😊😊😊. It was an amazing time in our lives. Raj’s dad and I were still together at this point also. It was so normal.

 

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My lil man was a cheeky cheeky lil monkey. Scans continued….then I got the worst call in July 2014. “We can see something on the scan” 😔

Faith 🙏

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I am a Sikh. I believe in One God. I get told often, keep faith. The truth is I always have. I know many people talk about losing faith. They often say how can God exist because if there was a God, why would a child like Raj die? Why do I believe in God? Throughout this entire journey I have always felt protected. Raj went through a shedload of treatment but it never affected him. I literally felt like there was a shield around us. Throw what you like at us. We were protected. God protected us. On this earth, I almost felt like Raj was my guardian angel. I remember Raj was 3 years old and he saw someone push me once. I remember he kicked this person for hurting me. He was 3! That was the point I thought wow maybe he was sent to protect me.

Im going to write a bit about the day Raj died, so please stop reading if you dont want to know more. I understand some may not want to hear about death. Me? I think it’s important to discuss. To understand what can be improved and also to understand and make sense of it in some way.

3 nights prior to passing: Raj was mostly ok but he started experiencing a bit of a back ache. During the night he struggled to sleep. He said to me, “mum my throat really hurts when I swallow”. Then he started shivering loads. He felt really cold. I remember hugging him so close, rubbing his arms trying to warm him up. I was thinking, he is getting a cold. He is going to end up with a temperature. It was an uncomfortable night for both of us. I ended up giving Raj a little morphine as his back was really aching. In the morning I woke up but Raj managed to get a few hours sleep in. I rang the hopsital and said, I think Raj is getting a cold. Can I just take him to the GP instead of going into the local hospital to check him over. A trip into the hospital would have meant around 3 hours of wating around etc! The GP was great. Dr Sadrah, said come in the next 20 mins I will see you asap. We went into the surgery. Dr Sadrah checked Raj over. He said throat all clear, ears clear etc. He probably is starting to get a viral bug. Raj told him his back ached. Dr Sadrah, said continue with morphine for pain. He joked with Raj. “Raj, im old I get aches and pains too!” When we left the surgery Raj laughed and said “mum he was a funny doctor”.

2 nights prior to passing: The night was really really uncomfortable. I was massaging Raj’s back. He was hurting. We used to sleep together on a double sofa bed downstairs by the end. During the night we moved from bed to sofa, sofa to bed. I was absolutely shattered. I topped Raj’s morphine up. That made him sleep. I however I was sat up at 3am in my kitchen crying my eyes out that night. I was absolutely shattered. I was sad Raj was going through this. This was the one and only time. I told him (even though he was asleep). “It’s ok to let go Raj” 💔

In the morning I phoned Raj’s nurse. I said Raj is in pain. I think he has pulled a muscle in his back. After speaking to Raj’s consultant, they asked me to go into the hospital so they could check him over. I rang Raj’s dad and said Im going hospital with Raj if you want to come. He met us at the hospital and at 3pm the day before Raj passed, Raj saw his local team for the last time. The doctor checked him over. Raj was extremely sleepy from the morphine. The doc agreed Raj, had pulled a muscle in his back. She said keep the morphine regular. Other than that, we went home. Raj said his pain had gone from a 10 (high) to a 5. The morphine was working.

That evening I had been invited to an event for The Brain Tumour Charity. It was an awards dinner to thank fundraisers and researchers. I wasnt sure If I should go. Raj wasnt too well, but after he said his pain was subsiding and the doctor saying it was just a pulled muscle I felt comfortable going. I actually thought maybe I will hear of something new that may help Raj. I knew there was going to be researchers and doctors there. I was always looking for a solution. I never stopped looking for Raj. Only weeks before I had contacted Duke Childrens Hospital in the US. They told me sorry, there is no cure for a high grade glioma. I also contacted a centre in Turkey. They used thermo-chemo options. I knew there had been some success with their techniques. They told me sorry, we only treat adults. I never stopped trying. I also needed a few hours solid sleep. I couldnt do 3 nights without sleep.

That night I went to the ceremony in London and Raj’s dad took him to his and grandma’s house. Around 8.30pm Raj’s dad rang me. He said “Raj said he is in pain. It’s too much. When I say that to mum she knows what to do. Ask mum. ” I asked his dad what meds he had had and told him what to top him up with. Now I was sat there worrying. I text his dad 40 mins later. I heard back a short while later. He said he is going sleep now. Still a little worried, I text his grandma (he slept with his grandma when at dads). At 11.10pm she text saying he is fine. He is asleep. Then I relaxed. Raj is ok.

20th April 2018

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The plan was to pick Raj up at 9am as his grandma had work. In the morning I rang his grandma. She told me she was staying off work so I didnt need to get Raj straight away. I said to her I need to come get some urine off Raj though. I had a nurse coming at 10am to take a sample (they just wanted to make sure there was no infections following the hospital visit). Then I heard Raj. “Mum, I want to come home”. I said “Im coming to get you baby”.

Soon as I arrived and saw Raj, I knew Raj was dying. His grandma said he has a rattle in his chest. It started a little while ago. That rattle is known as the death rattle. I exptected we had 1-2 days left. I took the urine sample and went to the bathroom to compose myself. Raj’s dad looked at me and said is he ok? I said “No Aman, nothing is ok” with tears streaming down my face. I knew this was it. I thought, I will take Raj home, speak to the nurse and then tell Raj’s dad come over. Raj was struggling. He couldnt walk. We had to get the wheelchair to take him to the car. I strapped him in and we started the 10 minute journey home. His grandma also came with us in the car. Raj kept asking, “mum are we home yet?”. I think he asked 3 times.

When we got home I forgot Raj couldnt walk. I opened the door, and he got out and started walking in himself. I stabalised him to the door. We walked in. Raj got straight into bed. I said shall I turn you on your side baby. He said “yes”. I then saw Danni ( the nurse) pull up. I said to Rajs grandma. One second. I ran out and said “Danni Raj is not right”. In the 2 seconds I was outside Raj asked his grandma for Oso (his fave bear). She handed it to him.

Danni came in quickly. She looked at Raj and said “Raj are you ok?” Raj started to gasp. He said “my back, my back”. Danni said “Suki hug him right now, right now”. I jumped on the bed and hugged Raj so tight. I told him over and over I loved him. 30 seconds later my beautiful baby boy stopped breathing.  💔💔💔💔

His grandma hugged me as I hugged him. It took seconds. Just seconds and he was gone. My baby was gone. Grandma rang dad and my mum and dad and told them to come straight over.

My baby came home to me. At home in his favourite place. In his bed, safe with mum and Oso. With his grandma and a nurse there. I know Raj would have felt so so safe. You have this great notion, that your final goodbye would be so peaceful. The truth is if I had had that chance, it would have meant Raj had died slowly. Shutting down. Non responsive almost. I didnt want that for Raj. I didnt want to watch him not eating , not drinking, just sleeping, and on pain pumps. 4 days earlier we had gone out to see Dinasours In The Wild In London. We enjoyed every moment we could.

The doctors and nurses said they have never had a child die like Raj. His head nurse said in 40 years, 1st time she has seen this. She couldnt believe Raj had walked in minutes before dying. He was hardly on any pain meds. Usually, they have to administer a pain pump. Which is constant. Dr Sadrah the doctor we saw 2 days earlier came over to pronounce Raj officially. He looked at me and said you never know. He didnt see this coming as didnt Raj’s consultant and nurses the day before. He said, when I saw Raj I was pleased he was so so well. He had told the surgery staff, Raj was amazing well despite all the treatment he had.

That was my boy. He was a soldier and I am extremely proud of him and grateful. Grateful he came home to me. Grief can destroy you. I have sat and thought I should have kept Raj home that last night. The truth is though, I would have been so tired I wouldnt have been able to care for Raj. I would have been angry. Angry at the situation and I would have been short with Raj.  I would have then felt so so guilty that I wasnt at my best with Raj. His consultant also made me see something. Grandma later informed me Raj had been hallucinating during the night. Had Raj been with me, I would have rang the hospital. They would have asked me to take him in. The likelyhood is Raj would then have died in hospital. I didnt want that. Those last moments were so traumatic though. I have watched it happen over and over in my head again. Watching him gasp and just pleading with him in my head, “just breathe baby breathe. Take my breath but just breathe”.

Raj held on, he came home to me. I love him so so much for that. Not only was he my son. He was like my little best friend. We had the funniest reltionship. So much fun. This is as sad as it will get. I wanted to share this as it helps me to write about it. Get it out, but also I hope it gives others hope and faith. Raj was protected until the end. He didnt suffer the way he could of. God made his journey smooth and Raj is now safe. Thankyou for choosing me to be your mummy Raj. ❤💚

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I have visions of him laughing and running around crazy. Being so so cheeky! My posts from now on I am going to try and show you what a funny guy my lil man was, because thats why all of this was worth it. Raj lived a good good life. I want to share how happy he was. Next post…I will show you my crazy child more! ❤

p.s That urine sample I took that morning, I couldn’t come to throw it away. I mentioned this to someone I know. She looked at me and said “omg, that’s his piss though”. That’s a typical response from someone who doesn’t get it. It was from my son. I couldnt get rid of it. I told Raj’s nurse could she take it. It will feel like I done what I was meant to with it. She told me Suki, It will sit on my desk as I dont want to throw it away too! She suggested I put it in a plant pot and grow something. That’s exactly what I did. This plant pot has been lovely named Raj’s piss plant by his cousins 😊🤣❤.

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Work? 🤔

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It’s hard to believe this now, but I honestly thought I would be OK when Raj died. After all, I had known for months that his condition was terminal. Unlike some parents, I had been given time to prepare for this loss. I convinced myself I could deal with it.

I knew I would have no regrets about the way Raj had lived his short life, or doubts about whether I had tried everything possible to save him.

In the days and weeks after he died, I was kept busy. We had prayers at home followed by Raj’s funeral. I carried on. I made plans to raise more money for The Brain Tumour Charity through The Raj Rana Fund, which we set up after Raj was diagnosed.

And then it happened. About three weeks after Raj’s funeral, I felt my heart explode. Smashed into a million pieces. It was a physical sensation as much as an emotional one.

I struggled to comprehend how I could be feeling so terrible. I kept thinking: ‘Come on Suk….you spent so much time with Raj. You made the most of everything. You tried everything you could. You knew this was going to happen.

It was then I realised what grief really is. It can’t be controlled or planned. You can’t rush it. The realisation hit me. Grief could be a forever thing.

My manager had attended Raj’s funeral and I’d said to her there: ‘I’m coming back soon!’

She told me: ‘Whenever you are ready, Suki.’

 

I realise now that rushing back to work would have been the worst decision. This is the hardest and most important time of my life. I need to heal and my mental health at this time is so important. I’m so grateful I had the opportunity to take time off with pay. I didn’t need to worry about finances. Bills will always have to be paid but at a time like this, it’s the last thing you need on your mind.

My employer, Mars, had been hugely compassionate through Raj’s treatment. There was flexibility around appointments and a mutual understanding of what was required from me and them but I know that others have very different experiences.

I’m part of a forum on Facebook for bereaved parents of children who died from cancer and when I discussed with them the issue of going back to work, I was shocked by what I learned. Some were sacked as they took time off to care for their children. Others had to rush back to work as they were not paid.

One mum said she worked in GP practice and didn’t even get the three days of compassionate leave she had requested following her child’s death. Others, like me, had support and agreed it was needed most at this time.

Losing your child is just wrong. I realise I will need to be kind to myself and work through this slowly and so I had my first counselling session this week via the NHS, after six weeks on the waiting list. I’m not sure what direction counselling will take but for now I will continue with the sessions.

This week, Parliament is discussing plans to give parents the legal right to two weeks’ paid leave following a child’s death. I can’t stress enough how important this Bill is and how much I hope it becomes law. We need to support anyone in this position.

Two weeks is not a long time at all to grieve. To be protected financially is just something that would allow you to have peace of mind in the darkest of days.

Rushing back to work is not good for anyone. I know of parents who went back too quickly and then had to take time off months later. I’m now back at work on reduced hours. My days and workload are guided by me. That’s the kind of support parents like me need. In return, I will give my job 150% effort.

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None of us in this ‘club’ wants to be a part of it. To help protect us financially is just a little weight off our shoulders, from the huge mountain-like burden we already carry.

Kamrans Ward

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Raj’s treatment took place on Kamrans Ward at John Radcliffe Hospital. Chemo can be horrendous. Our experience of it was a pretty smooth one. Raj loved the ward. He didnt mind being there as they had a playroom with lots of toys. They had lots and lots of dvds. I swear I watched Jurrassic Park like a million times on the ward.

Over the years you meet so many people. From doctors to charities to other patients. I wanted to share with you all some of the amazing people we met while on the ward. We were all part of a family we didnt want to be part of. But none the less oncology famillies are the kindest and most amazing support.

HENRY ALLEN- 

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One of the drugs Raj was on was called Cyclophosomide. This drug was given daily and didnt take very long to administer so we were allowed to stay off the ward. During this chemo week we were allowed to stay across the road at a charity house called Clic House. There were 5 bedrooms and therefore 5 families could use it for sleeping, cooking in and there were lots of toys for Raj.

 

The house was run and managed by a charity called Clic Sargent. The idea was you were close enough so you could get back into hospital asap if there were any reactions to the drug. In Clic House is where I remember our time with Henry Allen fondly. Raj was younger than Henry. Henry was such a sweet boy. I remember so many times Raj would go to grab the toy Henry had. You know them embarrassing moments, where your kid is the naughty one, grabbing at toys 🙄. Henrys mum Dawn was always sweet and would say let Raj play with it and Henry lovingly would let him 😊. Henrys time here was also brief. He had neuroblastoma, which is a really tough cancer. Sadly despite lots of treatment  Henry gained his angel wings at the young age of 4. Henry’s mum Dawn is amazing and set up the charity The Henry Allen Trust alongside her husband. This charity fundraises to allow for famillies in similar situations to receive treats. It was in 2014 I had put up a facebook status asking which I should buy for Raj’s birthday pressie, a Xbox or Ps4 Dawn messaged me and said Suki please let me buy it for Raj. I remember saying no, thats too much. If you want, just make a contribution. Dawn wasnt having it and she bought Raj his Xbox. He absolutely loved his Xbox. Thankyou so much Dawn. Dawn also treated us to weekend in London recently in Jan 2018. Raj watched Aladdin and had a trip to Hamleys. We made forever memories. ❤

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Evie Mae & Daniel Fagan

We were on the ward so much you made friends with other famillies. One of the cutest boys we saw often was Daniel. Daniel was adorable and mostly we would see him rolling through the corridors. He had one of those infectcious smiles 😊. I remember Daniels grandad being with him lots also on the ward. He would always make conversation and help pass the time. Again Daniel was another boy who gained his angel wings a couple of years ago now. 😔

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Alot if the time we would be be in a cubicle, our own room essentially. In the room we would have a tv and it was all fairly comfortable. This is where  I remember little Evie Mae mostly. She was tiny 😊. She would just randomly stroll into our room quickly followed by her mum apologising. She was adorable though and Raj thought it was so funny that she would wonder in at her leisure. Im so pleased to say Evie Mae is doing really well. ❤

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Chemo can have so many side effects. Raj was on 5 different chemo drugs, All bringing their own issues. He had reduced blood counts throughout his treatment. When his platelets were low Raj would get nose bleeds. Platelets make it difficult for your blood to clot. He had to have his platelets replaced on 2 occasions. He also had hearing tests to ensure the drugs didnt make him lose his hearing and eyesight tests as you could also start to lose your sight. Great huh! If the cancer doesnt kill you, you may lose your hearing or eyesight instead. Chemo is poison at the end of the day. Raj used to be potty trained at age 2 but due to this difficult time period I had put him back in nappies. Everytime I cleaned Raj or wiped his urine I had to wear gloves as the drugs were also toxic to my skin if they came into contact with them.

It was coming upto Raj’s 3rd birthday. Raj’s birthday was on 23rd December. We couldnt disrupt Raj’s schedule so were told either we would need to be in hospital for chemo on Raj’s birthday or spend Christmas in hospital. We chose to be at home for his birthday so Christmas 2013 was spent on the ward. The ward made a massive effort to give the kids a great experience. Father Christmas even visited! I remember parents were allowed a free lunch that day also as it was Christmas. It was courtesy of Sodexho (a catering company). It was so delicious I think I opted for a sandwich in the end. 🙄

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Raj managed to escape his entire regime without any infections. Things were amazingly smooth but Raj looked sick, his hair fell out and he looked weak. Was he heck though, he was full of beans! He was crazy….just buzzing with energy. It felt like God was watching over us. How else could he avoid all those side effects and walk this path with such ease. 🙏

SAM McCAWLEY

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We had a month or so to go and we ran into another family. This time we were on the bay. 4 beds in one huge room. Curtains could be pulled around the bed for privacy, but that was it. Next to us was little Sam. He must have been about 1 years old. He also had a brain tumour, an ependymoma. Oh I must mention now, Raj’s tumour sample was confusing. They said it looks like both ependymoma and glioblastoma 🙄. Basically no answers. Could be either. Anyway, back to Sam! This is where I met Sam’s mummy Marie. Marie was like omg! Its Raj! She was so happy to see us. She said my dad saw you on the documentary that aired. I cant wait to tell him we met Raj. She said her dad had said I saw this boy called Raj. He did amazingly well. If Raj can do it so can Sam. It was so nice to hear Raj’s story gave others hope.

Sam’s story thereafter became similar to Raj’s. Raj would replase and then so would Sam. I became great friends with Marie. We are so similar. We were both sort of like a dog with a bone 🙄 Always researching, always pushing for treatment. I would tell Marie, right go for this treatment…or Raj is doing this. A few years in, Sam progressed quicker than Raj. I remember ringing Marie and then it was her turn to help me get my head straight. She knew what to do.

Sam had every thing from chemo to protons (which Marie and her hubby Mark fundaised £45k to have privately in Germany). She even flew Sam to Memphis to St Judes Childrens Hospital. One of the top hospitals in world. It wasnt meant to be in the end and Sam passed away last October. He will be forever 6. Marie, is still one of the strongest women I know. She kept telling me, Raj can do it Suki. Raj is different. She still supported me. Oh how I wish we could have done it for you guys Marie. Now Marie, is one of my friends who supports me through my grief. Who truly understands my pain 💔

In April 2014 we finished chemo. It was finally time to get that line out of Raj’s chest. Wow the freedom that would bring. You couldnt get it wet. I used to cling film the lines when Raj had a bath. It was such a pain but necessary. Wet lines could cause infections. We stayed at Clic House the night before they removed the line. This boy is such a nutter. He was jumping around on the bed when he fell and smacked his nose on the wooden edge of the bed in the morning before the op. Only my child. Look at the state of him.🤣.

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Raj had a such an aggressive tumour, they always thought it would come back within months…….but then he broke the trend. We got 19 blissful months cancer free 😊❤.

 

 

Missing my little buddy ❤

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I miss laughing! Laughing every single day with Raj. For those who dont know, Im a single mummy. It was just me and Raj for a long time now. We had our routines and fun little games we would play with each other. He also told me I was boring though but that didnt bother me 😊. Boring…but he still wanted to spend 95% of his time with me 😋. You loveeeeeeeed me Rajvir!

His nurse Jane recently was talking to me and said Suki it was so lovely to watch you guys together. Jane saw us often. She would come over weekly to our house to change Raj’s dressing on his picc line (line in his arm used to give drugs). She said yes you were mother and son but it was like you were both friends. It’s true, he was my little buddy/my bestie. I got to spend alot more time with my son than other parents do with their children and he was the best company.

Its been a tough week again. I have cried lots this week. Literally felt on edge all week.  Nothing feels right any more. Nothing.

I miss the laughter. My lil man was so entertaining 😊. He used to call Jane crazy and sometimes butthead! I used to be like, Raj you cant call your nurses butthead mate! Recently she had been coming over and we had discussed Jurassic World. She told him she hadn’t watched it. He kept telling her Jane, its so good. You have to watch it. Next time she came over he would ask, ‘so did you watch it?’. She would tell him, oh no I keep forgetting and he would tell her, ‘you need to write it down. Write it on your hand so you dont forget!’. Then he would randomly say to me days later, ‘mum I cant believe Jane hasn’t watched it. She needs to watch it!’. Well monkey, Jane watched it and she really enjoyed it. 😊

We would sit and laugh at the silliest things. I fondly used to call Raj ‘a lil shit’ 😂. I swear he really was too. I was even tempted to have ‘lil shit’ in flowers at his funeral…but then I thought people may think he was some abused child 😂😂😂. Oh and Raj got everything he wanted. Attention, toys, everything. That child loved life! His attitude to life was amazing. That smile of his was infectious, still is 😊.

 

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Life has been so tough at times but I swear, I honestly swear I would do this life all over again. In a heartbeat. Even the long long days in hospital. As least I was with Raj. I know I keep saying it, but I just miss him. My soul misses him.  Some days I sit and still cant believe it happened. Raj died. MY Raj died….nothing about it is right. Raj was ALWAYS alright though. Until he just wasn’t.

I know he is always around me still but the longing to physically touch him. To kiss his head where his hair didnt grow….to hold him against my chest like I used to. I would do anything for that…anything.

Everyday….I just watch his videos. They make me smile. He was happy….we were happy. He used to agree, we made the best team. 😊 Im proud of him, and im proud of me.

No rhyme or rhythm

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One minute you are sat there all fine. Next thing you know you are literally sobbing your heart out, tears streaming down your face with your heart feeling like it is totally broken. There literally is no rhyme or rhythm to grief. You cant plan for it. That I am finding so hard to deal with. Im someone who does their homework. Always did with Raj with treatments, tumour types, hospitals we went to. Anything we had to face I made sure I knew what to expect. I would always go in prepared. Im someone who faces their fears head on. With grief I have realised is no quick fix. It takes a long time to deal with. You cant rush it. All of my usual ways make me want to deal with it, accept it, grow from it. That will happen…….but not anytime soon. 🙄

If you read my last blog, you will have maybe also watched the documentary. If not, basically Raj had surgery and was not paralysed!! woo hoo. Jay had managed to get 100% of the tumour out.

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His left hand and arm were a little slow to come back but all movement returned. I was so happy and thankful to God for bringing Raj through this op so unscathed. After a short stay in Robins Ward we were home a few days later 😊.

We went back quite quickly after the op and met Dr Shaun Wilson. He would become a really friendly face and Raj’s oncologist throughout all of Raj’s treatment. Shaun advised Raj would need chemotherapy to try and deter the tumour from coming back. Chemo would last 6 months and we would go through 4 cycles over this period. He warned us it was a harsh regime and we would be alternating one week in hospital, one week at home throughout.

Im not going to lie. Chemo scared me. That image of bald kids and violent sickness. I was pretty scared going into it but it had to be done. We had to do the best thing for Raj so we commenced chemo in November 2012 on Kamrans Ward in Oxford. The very first day things were pretty smooth. Raj had to have chemo through a hickman line (2 lines that came out of his chest wall). We used to call these his wigglies. His wigglies would just dangle, so the hospital would provide us with wiggly bags to slip them into. The wiggly bags would be put around their neck and the lines just slipped into them keeping them safe and less risk of them being tugged at.

 

 

As mentioned first day went smooth. Raj was a lil off his food though. We thought we would be really clever. We gave him a little banana, a few biscuits, some yougurt, some cereal. Just a little bit of everything. We thought well you know he had had a fair bit of food even if  it was little bits. Cue vomitting at 3am 😂. That was our lesson learnt. Do not feed Raj if he is not feeling hungry. A few days without food was ok. As long he was drinking it was ok.That is hard to do though. As mummies we just want to make sure our babies are fed. That was the one and only time Raj was sick during chemo.

Chemo carried huge risks. Infections was one of them. Chemo destroys all your cells. The good as the bad. Think of it as a reset button. Wipe it all out…start again. As it wipes out the good cells, it can be dangerous or even fatal if your body came into contact with bad stuff. Your body would struggle to fight off infections. I became quite pedantic. I had hand gels everywhere in the house. I pretty much banned everyone but close family from my house! Dont even think about coming near me if you had a cold! I also had to stay well. I wasnt going to risk passing on anything to Raj (funnily enough I saw my own doc for tonsillitis in March this year. Due to Raj’s condition I got an aptt within 30 mins of calling. I said to the doc I cant be sick. I need to look after Raj! She said I will give you antibiotics. You havent had any since 2011. I said well duh, because I wasnt alllowed to be sick. I need to be well for Raj)!

Anyway they used to measure Raj’s white blood cells during chemo. Anything below 2.0 was bad. It meant you were neutropenic (at high risk) and unlikely to be able to fight infections. Over the period of 6months Rajs white blood cells only rose over 2.0 for 2 weeks! The nurses would come over to take blood weekly from his wiggly. Raj literally would be jumping from sofa to sofa like the crazy child he was. The nurses would say oh wow he looks really well. His bloods must be fine. 2 hours later they would ring with the results and say omg his bloods are so low! How the heck has that child got so much energy when his insides are so sick! Thats my crazy child 🙄

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There were side effects to the chemo though. I will share more on these in my next blog. Losing his hair was a tough one 😔.

 

 

 

Red pill or blue pill?

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The three months following Raj’s 1st op were quite surreal. It was as if nothing had happened. Raj was so so normal. Running around as usual. No lasting effects of surgery at all. Jay rang us for results of the tumour analysis and said the pathology was difficult. Raj’s tumour looked like 2 different types. One was a glioblastoma. The most aggressive type of brain tumour there is. The other was an ependymoma which was a grade 3, with slightly better outomes. Regardless we knew Raj had a cancerous and fast growing tumour. The docs asked us to go back into hospital for a MRI in August 2012 (2 months after surgery). The MRI results came back quick. The tumour was growing really fast.

Jay sat us down and gave us the options. Option 1: we go in for surgery and Jay would be agressive. We remove all of the tumour and some healthy brain cells around for a clean resection. The very likely risks were Raj would be left paralysed on the left hand side of his body. That could include not being able to walk again. Use his hand or arm and maybe not even be able to swallow again. The further downside to this was the tumour could return and he could die within 6 months anyway. Basically we could ruin his physical freedom for him to die regardless.

Option 2: We do nothing. Raj would be gone within 3months but he would die running around as he was. A happy boy with full use of his body.

I knew what I wanted from that first conversation. All the family did not see the same way at this time though. I wanted to fight, I wasnt going to have it any other way. Hope is everything. There could have been a 1% chance of survival I would have taken it. Im optimistic, and I had faith in God. It was also the year of the olympics in the UK. The paralympics were on. It was so clear even with a disability Raj could live a happy life. It would be different but if people with disabilities could do all the amazing things these paraolympians were doing, how we could we say that that was a lesser life to live?

We started talking about how we would handle a disability. Would I quit work or would grandparents help out? We chose to take Raj away to Eurodisney. We thought if he wont be able to run around we wanted to make and capture some memories.

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In October 2012 we headed into JR (John Radcliffe) for the big op. Prior to this I received a call from Sasha the camera lady who had been at the hospital filming for the BBC. She worked for Landmark films. She said Suki, I don’t mean to pressure you but it would be really great if we could film you guys. During the 3 months since Raj’s diagnosis I had done my research. I was shocked to learn brain tumours killed more under 40s than any other cancer.  Research was also massively underfunded. They literally had made next to no progress since the 70s! I found myself wondering how I could help this cause. I thought filming would be a good start. I could help by drawing awareness to the fact we didnt have many options. Sasha became friends with us at hospital and with Raj. It was a huge comfort as I knew she would be in theatre with Raj. Raj knew her and he enjoyed being around her so it was good to know he would have someone he knew in the room (even though I knew he would be asleep) . Below is a link to the documentary. Its hard viewing and there are scenes from Raj’s op so please watch with caution.

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There was one scenario though that I was scared of. Jay had prepped us for it. He would send Raj’s tumour off mid op for analysis. If it was the glioblastoma he would close up and not resect the whole lot. The reason for this was he expected Rajs tumour to be back within months and it would kill him regardless. He did not want to paralyse  him if this was the case. If it showed the less aggressive ependymoma, he would go whole hog. Well the rest is captured by the lovely Sasha. Meet Jay, the most amazing surgeon! 😊

https://vimeo.com/groups/336835/videos/58544275

 

Where did it all start?

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I’m sat here drinking my morning coffee. Thinking about Raj. Feeling empty. Every morning was busy. Woken up by Raj to the words ‘morning mum’. I still wake up and say ‘morning Raj’ in reply to the words I dont hear. In my head, I still hear him. We never ever had a lie in! Raj was a get up and go type of boy. We woke by 7am everyday! He was so eager always. We would go down, watch cartoons and then time for Raj’s brekkie. Brekkie mostly consisted of Indian tea and toast. I remember Raj used to complain my ‘chaa’ (tea) did not taste as nice as bibi’s (my mums). I used to think why?! I make it as I am meant to. Then one day I added extra sugar. He said….that’s better mum!’ Grandma’s huh, tut tut. Once Raj was sorted it was sorted I used to make my coffee. I would say to Raj guess what, guess what Raj?! Its thats time! It’s coffee time! He would go ‘oh mum shush. I hate your dumb coffee time’. I used to say ‘Raj it gives me super powers though’ and he would reply ‘no it doesn’t mum!’ Yea, he wasn’t a believer. 😊

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Anyway….Raj was 2 when he was diagnosed in June 2012. There were no symptoms or anything. He literally collapsed. He was fully conscious but his left side was all floppy. Raj’s dad and I took him into A&E in Slough. They waited to see if he recovered over a little while. They were thinking maybe he had had a febrile convulsion ( fairly common type of seizure in children usually due to an infection). Nothing changed.

This is probably the point I should have known my child was like hulk. A nurse came over to take blood. I remember it clearly. Raj was on my lap. Crying and struggling. Disabled on his left hand side still. I was holding him, the nurse was holding onto him to take the blood. His dad was stabalising him and 1 other nurse was holding him still so the nurse could access his vein in his hand and get the blood. My superhulk child was literally fighting against 4 of us. Still able to move! There was blood dripping on the floor and all over my shoes as we struggled to keep him still. I just remember the nurse saying ‘im so sorry, im so sorry. This doesn’t usually happen.’ We then sent Raj in for a CT scan as the doctors searched for an answer.

You know it’s really bad news when the doctors look for a side room to usher us into. ‘We found a bleed in Raj’s head. It’s not a normal looking bleed. We suspect there is possibly a tumour under the blood’. That was it…the point life just fell apart.

That same night Raj was rushed to John Radcliffe hospital in Oxford around 12am. This hospital became like home away from home. Anyway, that very night we first met Tim Lawrence who was a neuro registrar. Raj’s dad and I were sat in intensive care waiting to talk to a doctor. We saw one walk past and a woman follow him with a camcorder. We looked at each other like…huh?

Tim then came in and said we need to operate tonight. We need to clean up this bleed and see what is underneath. Then the strange part. Tim said ‘ we have the BBC here filming a documentary. Can they film the op?’ Ummmm……no. We had just been thrown into this crazy world and the last thing we wanted was it filmed!

A few hours later, around I believe 5am the docs were back. In walks Tim and another doctor. Cue Jay, senior neuro surgeon . I love this man so much. You will hear more about the legend that Jay is, as this blog continues. They advised, us as suspected they discovered a tumour. There was nothing more left to do at this point. Just after 5am we were given a room. We slept for a few hours while Raj recovered in intensive care.

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The next day Raj was up and pretty swollen from the surgery but back to being the crazy 2 year old we loved. The left sided weakness subsided….some level of normal returned. We came home after a few days. The hospital were going to test Raj’s tumour and advise next steps. Believe it or not the next 3 months life was normal as normal could be! We went home and awaited those crucial results……….

All that love and no one to give it to 😔

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I was thinking to give everyone a little recap on how Raj was diagnosed as my first proper post but today I feel to write about my day. Its been a really tough day.

Earlier today I visited Raj’s school. His head teacher is so lovely. They showed Raj so much love and they still continue to do so. Today was Superhero day in Raj’s memory. The children all said Raj was a superhero so it was only fitting they had such a day for him. The school placed a bench for Raj with an amazing plaque for him.

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The headteacher also gave me a box with lots of letters, poems and pictures from the children about Raj. I looked at a few but the truth is it broke my heart. There were amazing messages about how lovely Raj was. About how he always smiled and never was sad. How he always encouraged the other children. Mrs Eaglen (headteacher) then showed me a video of the day of Raj’s funeral. The whole school was taken out onto the field and they spelt out Raj’s name. They captured the moment with a drone.

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I was so overwhelmed. The school had gone to so much effort to involve everyone in this journey. It was an amazing way to showcase the love they had for Raj. 6 or 7 of Raj’s teachers came to the funeral. I also got flowers and such personal messages in the cards from them. No wonder Raj loved school. It was an amazing place with lovely people.

Coming home this evening, I started feeling such a empty feeling. Home is just not home. I go to my parents house where Raj spent so much time…..and even that no longer feels like the bright loving home it was. There is no glow from having Raj there. Its just really obvious that for the time being we are all just exisiting. Everyones light inside them has just dimmed. I see my 4 nephews often. They were so close to Raj, especially Remi. Remi is 9 months older than Raj and they both attended school together. Today Remi asked me ‘Sukh, can I sleep at yout house tonight’? I said sure, then thought I better make sure there is food at home for him.

Since Raj died I have not been functioning. I didnt shop for food for nearly 3 weeks. I just couldnt. I didnt want to. I remember the last time I went food shopping. It was the week before Raj passed away. I dropped him to my mums so I could rush out and get a few bits. I was walking around Tescos and I ran into the cereal drinks. I rang Raj at my mums house and asked what flavour Wheetabix drink he liked best. He said ‘vanilla mum’. He also asked me to buy popcorn and marshmallows. How could I go shopping and not pick up his favourite things? Even when i did manage to do a shop weeks after Raj died, I took my nephew Tanny with me. I then ended up binning so much of that food as it went out of date as I then couldn’t bring myself to cook. I used to cook for Raj everyday. Everything is a reminder he is not here. Anyhow, I forced myself to go Sainsburys today so I could stock up on some essentials. I felt so numb doing this though. So empty. The sadness in my heart was weighing me down so much. None the less…I done it.

Raj was my only child. It was just me and him at home. Missing him is an everyday thing at the moment. Today was just filled with sadness. All I saw and was reminded of today was everyone loved Raj so much. So so much. Its just not right that he is not here to receive all that love. He deserves to be here to have all that love. Someone who touched so many peoples heart, how is it right he doesnt get to see it? I want to show him and see his reaction….look Raj. Look what they did for you! What can I say, some days are just so hard. At the moment its wake up, feel whatever comes, repeat. One day at a time hey. 💔 😭😔

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