Since my last blog, I have managed to pick myself up, dust myself down and gain a little bit more of a perspective and clarity on things. I think I needed to have a complete melt down to bring me out the other side. To be honest it is good to have a good cry!! But I don’t want to relive that ‘hospital room moment’ I explained in my last blog any time soon. So I am taking control!!
The week after my last blog we had hoped that I would start Cetuximab but my White Blood Cell count was too low as it hadn’t recovered from my previous Chemo two weeks prior. On the safe side, my Oncology Consultant put it off, as they didn’t want to risk me getting an infection. I was a bit annoyed as I had gone in all guns blazing and ready to start this new treatment. I knew it was for the best though, but I selfishly didn’t want to waste any more time. It had been about 10 days since I had had the 6 litres of fluid drained from my tummy and I could already start feeling it build up again. I spoke to my CNS about it and my consultant and explained to them that I can’t take control of the Cancer inside of me but I can take control of the symptoms which come from it. As long as I can eat, breathe and not be sick then that helps towards keeping me in a more ‘normal’ state, as I didn’t want to leave it and end up the way I did before. That would then be a vicious circle downhill. So it was planned that I would come in to get a drain put in the following Monday and I would start Cetuximab plus Irinotecan on Wednesday.
The Irinotecan was a new proposal from my Consultant, after she had spoken to a colleague at Birmingham City Hospital. I will do and try anything, so of course I wasn’t going to turn it down. The side effects of the Cetuximab can be skin rashes, itching and a feeling of swelling on the tongue. The side effects of the Irinotecan are increased sweating, stomach cramps and diarrhoea. To see how I would tolerate the Irinotecan I would have a 50% dosage of it to begin with.
On Monday, I went into hospital to have my tummy drained and I felt positive about having it done even though I hate the local anaesthetic cause it bloody hurts!! The drain is a tube inserted using ultrasound images and I have had the same Doctor do it a few time already. The thing with the Doctor is he has never been overly enthusiastic about draining my fluid in the past as he always says its all tumour. This time was no different and I don’t know why I expected it to be. I ended up in tears as he pushed the screen and pointed out my tumour and said, ‘see its all tumour I don’t think it will get much out but its up to you’? I felt my positivity drain from me and I didn’t need to hear this and started crying. I told him that I was starting to struggle to eat again over the weekend and we can’t just do nothing. He then said, so you want me to do it and of course I said yes. I didn’t look at him through the whole thing, as the tears came down my face. When he was done I even said ‘thank you’ as that’s the type of person I am. When I came out of the room and saw Stuart I just burst into tears again and I felt so deflated. The nurses back on the ward know me and saw how upset I was and made a note on the system and it’s now been taken further. In the end I had 4 litres drained off and felt soo much better for it. It just goes to show that the doctor was wrong, and to be honest it doesn’t matter how much is taken off its all part of managing my symptoms.
Tuesday we had a break from the hospital and Wednesday it was back up at 10am for Chemo. You end up getting into a routine when you go blood tests, wait for blood tests results, MRSA swab, anti sickness an hour before and then needle in the hand. I don’t mind needles and bloods, I think by now I could actually do it myself..lol
Whilst the chemo was dripping through my veins, I was sat with my daughters tablet on Twitter and Facebook. Can I say OMG I became a big time Social Media Junkie, I blame the chemo!! It all started with a RT (Retweet) from Dr Christian off Embarrassing Bodies and it all snowballed from there. I am completely blown away by the comments and Tweets I am receiving. It is made even more overwhelming by the fact these people don’t know me and believe me I am trying to respond to as many as possible. At one point I was struggling to keep up. Twitter is still relatively new to me. I have now brought a lot of my friends and family to what they call the ‘darkside’ (they prefer Facebook) and they have joined Twitter too. A friend of mine Tweeted Matt Lucas and he tweeted that the only person he was following this week was me @katiescarb….how cool is that!! I also noticed that Davina McCall is following me too..wowzers!!
After my Chemo on Wednesday we left the hospital at about 5.30pm, so it had been a very tiring day. On the way home I felt like I was slurring my words and found it uncomfortable to swallow. By the time we got to the house, Stuart asked me if I was ok and I shook my head, I didn’t want to speak. I went into the house and Stuart got me a drink and I tried not to freak out about it as I didn’t want to make it worse. But I felt my tongue was swollen slightly at the back f my throat. I was a tad selfish at this point, yes I should have called the hospital, but I kept thinking they may stop this drug and this drug may be the one that helps me. I kept an eye on it and luckily it went down a couple of hours later and I managed to eat some food. Next time I promise I will ring the hospital, it’s better being safe than sorry.
On Thursday, It was back to the hospital again as my 7 yr old son, Sam was having a hernia removed. He was soo brave and I am soo proud of him. It’s not a nice thing to see your child go through and even though I had only had Chemo the day before, nothing was going to stop me from being there to hold his hand and stroke his head. It was only supposed to be a day case however he was sick when we were trying to get him up and dressed, probably from the anaesthetic, he was kept in overnight. Stuart stayed with him and my Dad came and brought me home, so I could be with Sophie. Sam is fine now, at home, a little sore, which is to be expected but he is happy not to be at school for a few days and to play his Xbox.
On Friday, It was my mother in laws turn she had to go in to get her Gallbladder removed and I’m happy to say she is back home this morning a little sore but OK. Honestly, you couldn’t write a book about all this and this is real life. The Scarbroughs’ are going to have their own private wing at Burton Hospital soon!!
Using Twitter this week, has made me want to use it to my advantage to help spread the word about such a horrible disease. I am only 31 and I have been in the situation where a Doctor takes one look at you and says, ‘You are only 31, I think its a red herring, if it’s anything else I will eat my hat’. And now look at the position I’m in. Doctors need to stop using statistics so much and realise Cancer can happen to anyone at any age. This isn’t to scare monger anyone but if you have any symptoms go to your Doctor get them checked out, it may be nothing but the earlier a potential problem is found, it can be treated.
On a top note to finish the week, Stuart and I are off to Elstree Studios tomorrow to watch Dancing On Ice the TV Show being filmed live to the nation!! How #amazeballs is that!! I am soo excited as I used to be a competitive Ice Skater quite a few years ago. My plan is to wear a pink wig so I stand out in audience!! UPDATE it has to be a purple wig as the shop doesn’t have a nice pink one!! Lol 🙂
Thank you to everyone on here, Twitter and Facebook for all the support you are giving me, it really helps to keep me going and I will try and respond to you all as best I can. #positivity #hope #cancersucks
To my Family and Friends, who I am incredibly blessed with..I love you more than words can say and together we will fight this until the end!!