Welcome to the world of an Oncology Mum

Here I am again πŸ€¦β€β™€οΈ. Blogging when I said I would start my book πŸ™„. Life is just a little bit crazy at the moment for us all and I felt I needed to release some of the words and feelings I am holding in.

I dont think anyone could have predicted what Spring 2020 would look like! The world is on some level of lockdown and the craziness of it all feels somewhat suffocating. For myself, a bereaved mother it heightens all the emotions Im feeling. Im not in a panic at all. This life of disinfecting, clinical cleanliness and avoidance of germs is one I know too well. One im really actually comfortable with. What it does do is remind me constantly of Raj. I find myself thinking oh well, If Raj was here this is how I would avoid this disease. An oncology mum faces this challenge daily. We have always been on alert. Watching out and noticing other peoples symptoms. Shutting the world away when there was even a tummy bug going around. My Dettol spray was never far away. My family were used to entering my home and being asked to disinfect their hands with antibacterial gel. I miss everything about life with Raj. Even the fear Raj’s weakened immune system bought me. πŸ˜”

Last month we saw #BeKind trending. This month we have seen how selfish people can be. We are all in this together and I really hope people help each other where ever they can over the next few weeks. The scenes of hoarding and lack of compassion for others have been hard to watch. I am worried,but not for me. For my parents and older family members. My mum recently had heart surgery and is seen as high risk. Like most mums, my mum is so so precious to me. I want to just hide her from all the dangers of this world. Just like I did Raj.

Life may get tough over the next few weeks. All I can say is all that matters is the fact we will all be with our families. I know kids can drive you crazy at times. I remember clearly the things Raj would do that would make me want to scream. He wasn’t lovingly known as ‘lil shit’ for no reason 😁. Honestly…truly you dont know how lucky you are. The situation is not ideal and the reason for this time together is not great but it is such a gift to be able to step away from the crazy speed of life and to just slow down and just spend time together. Even with all the worry….enjoy it. Every oncology family does and even though we have faced the worst of circumstances our often secluded times together have allowed us to make some of the best memories we have 😊.

Finally if you see someone working hard during these turbulent times, if nothing else give them a friendly smile. I am grateful for all the staff in shops and the NHS especially who are working so hard for us all. Be safe everyone. ❀

p.s It’s one month until Raj’s second anniversary. I have survived 699 days without my son. How, I dont know πŸ˜”πŸ€·β€β™€οΈ. All I know is one day I will find my way back to him. 20th April. The date I wish away.

He still guides me πŸ˜Š

Raj was diagnosed in 2012. Since his diagnosis I had continued to work. In between I took time off if it was needed. The longest being 3 months when we went to Oklahoma for radiotherapy and the last 6 months of this horrible nightmare. Whether it was working from home or flexible working hours we made it work.

The last year of Raj’s journey I had decided I needed some relief from the job role I was in. I decided to move backwards in the business. It meant I could still continue to work, and pay my bills but mentally was freed up a little. I chose to go back to work after 3 months of Raj’s passing. I needed to be kept busy and my employer was amazingly supportive. This year I realised I probably needed a bit of a kick in the backside and a new challenge! It came in the form of a new job role. It meant I had 3 days to prep for an interview for a job that was going to be more stretching than any I had done before. I bit the bullet and applied! Absouletly chuffed, as I got the job 😊. I am now looking after retail accounts. One of the accounts is Scottish and I had never heard of them….or so I thought. A few weeks into role and I was racking my brain. Where have I seen this retailers name? Then it clicked. I searched through my email and there it was. A picture of Raj on a brochure produced by The Brain Tumour Charity for this very retailer looking all sparkly with their logos. The charity were looking to work with this retailer and this brochure was all about how fundraising can help when it comes to research. It was just another sign for me from my lil man. Something I feel to say ‘keep going mum. You are going in the right direction’. πŸ˜ŠπŸ˜ŠπŸ˜ŠπŸ’š

Somedays thoughts of Raj dont bring me tears. They bring me huge smiles. He still very much exists for me and my family. Absolutely everyday. I was at my mums yesterday and looked around the room and it made me giggle. He is still there. In everything. There are several stickers around the room. Randomly placed. No one dares remove them! Last year, I helped my brother paint mum and dads living room while they were away on holiday. We had noticed Raj had drawn a house around one of the light switches and written Raj is home. We all loved that this still existed. We all decided that we would frame this little masterpiece and make it look like some piece of artwork. When we started painting however, my brother said it looked silly and we really needed to paint over it. We told mum, and she told us quite strictly, “No. Leave it!”.When she returned from India we noticed she had actually gone over the drawing and made it slightly darker so it never faded away. It looks completely odd and kinda dirty but no one cares and it is Raj’s 😊.

Raj spent so much time in that living room. We have so many happy memories. I remember one time, I came home from work and as usual went over to mums to pick Raj up. What was to greet me was hillarious πŸ˜‚. Mum and dads living room is a nice size. Around 23ft by 14ft. Raj had got hold of his grandma’s sewing thread and made her tie one end to the door handle and then he created his spiderweb! It went from door handle to dining table chairs to patio door handle to the curtain hooks. The whole thing intwined back and forth. I remember opening the door and him screaming ‘mum stop!’. “My webs going to break!” I remember looking through the door like what the heck πŸ˜‚πŸ˜±πŸ€¦β€β™€οΈ. He had the best relationship with both his grandmas and that makes me smile.

I miss him. I miss his laugh and I miss his hugs. April will be 2 years. I dont even know how that has happened. Its not right. I’m just glad I made the most of our time. I know he will continue to guide me. I feel like, I took care of him when he needed and now I feel he truly looks out for me when I need it most πŸ’š.

How long has it been?

As 2019 draws to a close, I have been thinking about how I feel about the new year. Last year I was absolutely broken at this time. The thought I maybe heading into a new year that Raj wasn’t to be a part of of was soul destroying. Now? Its become more of wow, how long has it been since Raj passed or before and after Raj.

Im lost and torn between my life with Raj and the life I live now. I want the old me back, the old times Raj was part of to be reality again. I dont have alot to write this blog other than to just say thank you to all those who follow and read my words. Thankyou to my friends and close family who choose to still talk to me about Raj. Thankyou to those who dont act like it didnt happen. Thankyou to those who acknowledge that Raj is still the hugest part of my life and always will be. We have a bond that can never be broken or forgotten. Thankyou for acknowleding that.

Mostly, thankyou to my husband. I don’t know how he does it if im honest. I am such a broken soul and he manages to not only love me but holds all my broken pieces together. He never asks me to move on, but remembers and talks about Raj just like me. He makes Raj a part of our conversations, jokes and giggles. He truly is my best friend.

I hope 2020 brings everyone love, and good health. Love is the key to life. Love a little harder in 2020 and hug your friends and family more. Time is the most special gift we have.

Hugs, love and best wishes.

Raj’s mum πŸ’š

“The Book”

I keep getting asked. When is the next blog post? When will your book come out? I thought you was writing a book? Hmmmmmmm…….(big sigh)

I have been wanting to write this book about my experience and most importantly about the amazing and couragious boy Raj was. What’s holding me back? (Big sigh….again) To tell you all the truth. The real truth of what life was like and the real struggle I faced will mean delving into the details of my past life. A life I have physically left behind. Sharing the true details of how tough life was means, writing some things that will shock alot of you and will also shed light on some things people may not want shared or known to others. Am I ready for any backlash it may bring basically is the real question? Maybe……Time will tell.

Oh and Hello December πŸ™‚

Hello to the the month in which my amazing baby boy was born. If my monkey was still with us, he would have turned 10 this month. 10! Wow. I keep thinking, how tall would he have been?! The first birthday without Raj was huge. The build up was absolutely huge and the worst. This year, of course Im broken but It would have been such a happy and big milestone for him. I find myself smiling and thinking how can I make it special for him. I asked my lovely family and friends to donate a gift in Raj’s memory this year. I think I received around 40-50 gifts!!!! Wow. They are all so bloody amazing. What makes it so special is these gifts will go to sick children in John Radcliffe hospital. I remember Raj’s face when he received gifts on the wards. That huge smile! Those who have donated, thankyou so much. You done something really special for these children. You will bring a smile to their faces on the hardest of days.πŸ₯°

Its a big big month. A big big one. I will be spending it with my family, my amazing husband and my dearest friends. I just decorated my tree and put up Raj’s bauble. I also found his Transformer tree decorations and added them. It wasnt a tough thing to do this year. Well not as much as last year. I cant describe the feeling. There are moments in life where some days life seems full. I feel content. I feel like it all fits. Those moments…I find myself thinking. Raj is around. For me to feel like that. He is around. Its a warmth I feel. I find myself smiling and just saying it out loud. “Raj, I love you.” At that moment something in my heart tells me he can hear it. Decorations were out and I had Youtube on shuffle on his Xbox as I put the tree up. The 2nd song to come on was All The Way Up (Oh just his fave tune 😊). I knew he would join me. 😊

I love the month of December. Raj loved December. I find myself being able to unwind and reflect. My thoughts? Life is so very very short, so please make the most of the ‘time’ we have off to enjoy our families. Take a tonne of pictures and videos too! Oh and share them. I love seeing pictures 😊

Still thinking about this book. I get told so often….you are so strong Suki. I once wasnt. I really really wasnt. I would like to give others hope and the courage to face their own challenges. We all have them in life

Right. I think I have made my mind up πŸ’₯.

Time to put pen to paper. Any suggestions for a title?!

Love to everyone who supports me. Truly grateful guys. Stay blessed ❀

How Am I supposed to do this? πŸ’”

The first year after Raj’s passing life was filled with so much. First birthday without him, first Diwali alone, all the firsts. The build up to these days was absolutely huge. The actual days seemed to pass by uneventful. I’m there again….the huge build up to his birthday next month. My lil man would be turning 10! Wow. 😊 I sit here and imagine how tall he would have been. He was always tall. Years ahead even in clothing sizes. He used to stand against me and we would say lets see how tall you are. We laughed, he would be tall as mum so soon. I am already thinking about how I will spend this day. I have already told Raj’s cousin Remi, we will celebrate with a cake and playing Raj’s favourite games like last year. I have already bought him his birthday pressie…just like I would have done if he was here. 23rd December, the day I learned what love truly was.

Year 2 is a huge struggle. Seems harder than the first year. Its the constant reminder, he genuinely died. It’s not a bad dream…it actually happened. Its been soooo long since I saw him, yet it feels like yesterday at the same time. My world stopped moving for me and I’m still there at times. Wanting to make him his toast and tea. Wanting to get his school bag ready. Wanting to cuddle up on the sofa with a blanket. Walking through the shops still remains a massive trigger. Seeing all the marvel clothes I would have bought for him. Last week I walked through the toy aisle in Asda with hubby and it bought back a memory of Raj. Raj used to say as we walked through this aisle….”mum just wait, just wait. Just wait a minute.” I knew he was obviously scouring the shelves to look for what toy he was going to ask to buy, but it always started with that…halting me and “mum just wait” 😊. That was a happy memory.

Year 2 feels horrendous. I find it harder to shake the bad days off. Often resulting in physical manifestations of grief creeping up. I felt completely floored last week. What started with a tonne of anxiety, feeling sick and feeling like I couldnt breathe resulted in me lacking energy, drive and even wanting to not talk to people. My body showed me it was fighting, but I ended up being run down and ill. I don’t want to stay in that sad place of solitude and this year I find myself searching for new ways of understanding and ways to cope.One of the things thats truly has interested me is moonology and how it can play a role in behaviour, moods and outlook. It’s something that has come to me via my manager and its been massively eye opening to look at correlations between life and moon phases!

Honestly, I find myself wondering how much can your heart truly take. Raj gets bought up less and less in conversations now…and that breaks my heart as he is all I can think about alot of the time. I have some amazingly special friends who allow me to talk about Raj often and that truly feels like the most special gift anyone can give me. Some days I sit and wonder how the hell am I meant to get through this life without him. I dont understand how I am meant to just go on but then it just happens. Another day goes by. Another day without him. Then I sit back and change my mindset. Its another day closer to being with him again. That is the only thing I can hold onto. I will see you again one day Raj. Mummy will….I promise you from the bottom of my heart. We just got to be patient baby boy. What a roller coaster of emotions!

Year 2, bloody fucking hard I tell you.

Suki. x

Show your love and support and GO GOLD πŸ’›πŸ’›πŸ’›

I don’t write consistently in terms of frequency. I just write as and when my soul feels the needs to spill what is going on inside. I am writing this post sat by the Amstel River in Amsterdam with coffee in hand. I was taking a moment to reflect and just think about life. Raj……everyday his face lights up my life. Nothing can make me smile more than thinking about the fun and jokey relationship we had. Then at end of these moments, the deep sinking feeling kicks in. Warm moments of love, coupled with complete dread and pain. That is what I have grown to accept. Sadly, that is my reality.

What I love this morning is my timeline on facebook being flooded by Go Gold pictures. September is childhood cancer awareness month and the theme is to Go Gold. Gold ribbons are attributed to childhood cancer. You may think why do we need to raise awareness of childhood cancer? We know it exists, right?

Here is why, 1 in 5 children going through cancer treatment wont make it through 5 years. Raj did. He is seen as a successful cancer patient….but he still died. He made it to 6 years post diagnosis. I am grateful but it’s still not good enough.

12 children a day are diagnosed with cancer. These 12 children are going to be treated with drugs that were made for adults! Their small bodies will have to endure the side effects that are difficult even for grown people to handle. In the last 30-40 years only 3 drugs have been developed to be used specifically on children.

You may see so many campaigns out there. Cancer research use children in approximately 40% or their campaigns yet put only 2% of funds into childhood cancer research. I have had my fund set up for Raj for a number of years now. Raj’s fund now only goes into research for childhood brain tumours. Be aware of where your money goes.

I know statistics are sometimes just numbers…but if you look around you will notice the reality. Before Raj was diagnosed one of my friends nephews died of a brain tumour. He was 5. He collapsed and following emergency surgery he never woke up again. Crazily, Raj’s surgeon was the same man who did his surgery. Another friends niece died of a brain tumour also before Raj. I knew childhood cancer before I was in the midst of it myself.

Raj’s battle with this is over. I can choose to move away from this world….but I will not. I will always be an oncology mum. I will always know the pain of being told your child has cancer. I will always know the dread of holding your child down so they can be pricked with needles. I will always know the fear of allowing doctors to pump toxic drugs into your child. I will always know how your soul feels like it is being suffocated when you get told your child is going to die. I will always know what it felt like to hear my son gasp for his last breaths. I also know for the mum and dad of the 12 children who will hear today their child has cancer, I will be by their side. I will continue to fight for you and your children.

I am choosing to be a voice for children with cancer. For those here and those who we shall meet again someday. Please help show your support. Change your pics…share our posts and be a voice with me. πŸ’›

P.S Mummy loves you monkey β˜ΊοΈπŸ’š

“I’m happy to see you moving on with your life Suki”.

Last month was full of emotions. Last month I got married to my best friend. The man who was there for me when Raj was at his most vulnerable. Who took care of us both. Who helped me make some beautiful memories with Raj.

A couple of months ago I shared that someone I had met at a business meeting also had lost a child. I wasnt ready to share this at the time but the lady who I met was the registrar when I went to give my notice for marriage. No matter how much I love Raj and he knows his mummy misses him, there is always that guilty feeling. Like is it ok to try and be on some level happy? I wasnt planning a big wedding and I wasnt even planning some of the traditional things we do in Sikh weddings. I just wanted to marry the person who made me feel like life was worth living even after all this pain. Basically, when we went to give notice of our marriage the registrar commented that the then fiance seemed really nice (he was out of the room at the time). I told her he was amazing and had helped me through the hardest time of my life. I told her about Raj’s passing and she asked to know more about Raj. She then said, “let me tell you something about myself. I also lost a child. She was 5 and had cancer too. That was 30 years ago”.She went on to explain that she felt our loved ones wanted us to be happy and they will be there one day when we also move on from this world. She aslo printed and left me with a beautiful poem about God and angels. I was a bit overwhemled and it wasnt until I got home that day I thought how crazy to meet someone who knew my exact pain who had resassured me it’s ok to be happy. I felt like it was a sign from Raj to say “be happy mum. I will be here when you get here”. I reached out to the registry office and requested the email of this lovely lady. We have since exchanged numbers and talked. She was also kind enough to attend my charity event I held for Raj. That is something I do love about life. Those soul connections we can make with complete strangers ❀

People have been so kind to me and allow me so much time to talk anout Raj. I know people mean well and I had a few say they were happy I was ‘moving on’ with my life. The truth is I can never move on though and I dont particularly want to. Why would I want to leave ‘behind’ my favourite boy in the whole wide world? For a bereaved parent we lose our child, every day. Several times a day sometimes. It is so easy to be transported back to the time our children were physically here. A few days ago, I suddenly had flashbacks to the moment Raj died. I was sent back to that very moment and then I was overcome with grief. Grief presents itself in so many ways. Somedays grief means I lose my appetite. Other days, its fatigue. Some days it’s a little more scary and I feel like I cant breathe. So there is no moving on. This is a forever thing.

What I can do is carry Raj with me through the new chapters of my life. I started this by making sure he accompanied me at my wedding. I had a beautiful picture of Raj attached to my bouquet. My wedding was a small affair and my nearest and dearest helped me celebrate a really special moment in my life.

I am definetly having a bit of a ‘Raj’ day today. I have spent some time looking at all my pictures of Raj. Damn, he was such a cute baby 😍☺️😁.

I really appreciate all the love and well wishes following my wedding. I am just trying to survive and enjoy life with those I love until it’s time to see my lil man again β˜ΊοΈβ€πŸ’š

Oooooh before I go. I wanted to share how Vikram proposed to me! I wont share all the details, but he took me to Raj’s resting place by the River Thames and said shall we ask Raj if I am allowed to marry his mummy? He knows exactly how to make my heart melt πŸ’šπŸ’šπŸ’šπŸ’šπŸ’šβ˜ΊοΈβ˜ΊοΈβ˜ΊοΈβ˜ΊοΈβ˜ΊοΈβ˜ΊοΈ.

Love to all. xx