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.
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 🙄
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 😔.