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Mummy and Raj

Life after losing my superhero

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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Oh gosh!

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Hi Guys!

Well, this is something new to me! Welcome to my blog. It will be my account of the life of Raj whilst he faced cancer and my life also as his mummy.

Facebook really didn’t seem the right platform to talk about details around Raj and our journey. I suppose I was really concious of the fact sometimes it maybe be too much or even too little detail for people to relate to.

Im not 100% sure where this blog will take me. Im hoping as I start to write it will just flow. What I am sure of is it will be a very true account of the struggles of cancer. What it really was like facing this battle together. It wont however be all doom and gloom. Anyone who knows me and Raj knows we were all about fun and laughter. I look forward to sharing with you guys the amazing moments we have lived through. Laughing, giggling and lots of cheeky smiles! Finally it will be also sharing with you all what life without Raj here physically feels like.

Thanks for visiting! Hope to have you back for the next ‘proper’ post!

Much love

Suki

 

 

 

 

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