Hello you! 6 CYCLES. wow. Time is FLYING! I never really have a plan of what I am going to write in my blog and today is no exception….
‘Learn from yesterday, live for today, hope for tomorrow.’ Albert Einstein.
I am sure most of you know already, but I had my 2nd scan at the 12 week check point to see progress (a few weeks ago now). The results showed a further 11% shrinkage. In total now the tumours have shrunk 27%. I am absolutely delighted! When I started the trial back in March I had 2 large tumours and 2 small tumours. The 2 large were over 8cm each and the smaller ones were both 1.6cm long. When you actually think about this for a second it is bloody scary!!! I mean, they got so big…. how did I not know?!!! That is just this cancer unfortunately. It grows silently and aggressively until BANG Stage 4 CANCER hits you!
F*** off FFS!
***(think rainbows + sunshine + Positive Mental Attitude)****
Since I have started on this trial the larger tumours have shrunk to 6.3cm and 6.4cm. The smaller ones are now at 1.3cm and 1.4cm. It is quite unbelievable really, and I am so thankful for this drug working. It has given me back my drive and I feel like ME again. It has given me the strength to get up and go back to work 2 days a week, to actually want to look pretty, put on my wig (I now have a selection haha) and go out, get on a plane and even go to Spain with my lovely friends!
So yesterday saw the start of Cycle 6 on TAS 120. That is 16 weeks in and I can’t believe time is passing so quickly. People often ask me how long I am on this trial for; the answer is quite simply this – as long as the drug continues to shrink my tumours they will keep me on it! I am still on the highest milligrams of the tablet (some patients have had to drop to 12/16mg daily as their bloods have lowered and become unsafe) but I am still on 20mg (the highest dosage), and all my blood work is staying the same which is really good news. I am still taking my phosphate binders to keep my phosphate in check, and all of my daily supplements. I bought myself a juicer a couple of weeks ago! Best thing I bought this year! I literally throw in anything – ginger, apples, oranges, pears, carrots, melon, lemons…. I love it and fresh raw juice is the best for your immune system and liver so I will keep feeding it goodness when I can! I am addicted to Iceland’s BULL Burgers. If you are veggie/vegan it is a must you bring them into your life!
As mentioned earlier I have just come back from a trip to Spain with the girls. YAS is getting married in Sep so we thought it only right to have our annual trip away together! It made me realise how important it is to have these times with your girlfriends. It was one of my favourite trips away with these 3 girls. There was non stop laughter and tears (from all the laughter) for the entire 4 days. Thank you to Bec, Meech and Yas cos you 3 are the best! Best at being my friend! 🙂
I enjoyed a lovely afternoon tea with the ladies in my life a few weeks ago, in Bromley Court Hotel. The sun joined us and we drunk a lot of tea. It was one of those days that you still remember weeks later because it was such a fabulous day! I have had many great days enjoying this amazing sunshine with my friends in their gardens in the kiddies paddling pools! I just love these days with my friends. They are really the BEST! Just so much lolling all day! We also celebrated Skins turning 31 last month and that was a very messy night with Sambuca flying about! I have only had a couple of boozy nights since my diagnosis last year, at first because I wanted to help detox my liver, but now I actually don’t enjoy booze like I used to. It is fine, I don’t miss those hangovers anyway!
People will often ask me how I am doing on this drug now. Most days I do feel good. It does still hit me in the morning when I am quite drowsy and dehydrated. I have to eat little and often now. Mainly fruit/ my fresh juice in the morning as anything else is just too dry and I cant digest it with my dry mouth. As the day progresses I seem to be able to eat bread, pasta etc! It is just that early morning rise I struggle with. My sleeping situ is fab now, with no issues trying to drift off. I guess that is me being more active and my body getting into a pattern again. My appetite in general is quite low. But I am very aware of this all the time. If I am really struggling I will eat 2 bananas in a row. They are still my saving grace when I cant face anything else! and thankfully I really enjoy them! My weight is at 54kg and I have lost 4kg since the trial so not a HUGE amount but enough to know I don’t want to lose anymore!
Last week I did a Reiki session at the Purley Cancer centre with Yvonne. As always she sends her positive healing energy to me throughout my body, through her hands. It is really astonishing how I feel afterwards, so refreshed and awakened. After our session she said she felt a lot of tingles in her hands as she placed them over my liver area which is a sign of activity and healing! I do get tingles, not pains, but feels like something is going on…. who knows….
We are planning a sponsored walk in the Keston woods on September 15th so please keep this free in the diary if you would like to join us. All monies raised will go of course to AMMF. The only charity in the UK who is raising awareness of Cholangiocarcinoma and researching on-going treatment.
As always, thank you for reading and thank you for your ongoing love and support! If you would like to follow me on my instagram its clairebarron82.
To every woman out there.