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Mummy and Raj

Life after losing my superhero

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-Β 

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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 πŸ™„. 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 treatmentΒ  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. πŸ˜”

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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. πŸ™„

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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. πŸ™

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 πŸ™„. 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 πŸ™„ 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 Β£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 πŸ’”

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 β€

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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 πŸ˜‹. 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.Β  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’ πŸ˜‚. 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 πŸ˜‚πŸ˜‚πŸ˜‚. 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.Β  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. πŸ™„

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 ifΒ  it was little bits. Cue vomitting at 3am πŸ˜‚. 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 πŸ™„

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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 πŸ˜”.

 

 

 

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.Β  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.Β 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 paralyseΒ  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 πŸ˜”

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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 schoolΒ 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. πŸ’” πŸ˜­πŸ˜”

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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 theΒ 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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