World CCA day – 12FEB2020

Today is the 5th annual world cholangiocarcinoma awareness day! Thats a bit of a mouthful isn’t it!!! I appropriately spent it having my second cycle of treatment in this new regime !!! I believe, I am picking up now. Slowly but steadily making good progress. 3 weeks ago when I had my first treatment in this new regime, I was in a very bad state. Barely able to walk, make conversation, drive…. basically function! In just 3 weeks, things are really turning around now. I notice a little difference every single day.

I have bloods every 3 weeks or more frequently if feeling unwell. Usually I am all over it, I keep an excel spreadsheet and have plotted a graph on my laptop so I can keep an eye on trends and what I have done myself so I can stay one step ahead at all times. 3 weeks ago, whilst feeling so unwell, I was too scared to see my blood results so didn’t ask my nurses for the usual report. We measure everything but in particular, I keep an eye on my liver enzymes and tumour markers.

Sometimes, these values are not good indicators of disease but mine have been showing a pattern and my tumour markers had increased in Dec when I was so unwell so I did not want to know if they had risen any further. I couldn’t take any further shocks and it would have thrown me over the edge.

Today, I am pleased to report my tumour markers have now come down again. I was right in not looking at my last result as my instincts were correct and values had increased further from December’s result. I have now got a bit of my confidence back and hoping things just go my way going forward. I need to feel well and stay well.

So, world CCA day….. it seems to me that we are creating a lot more awareness now. Charities and the public who have been affected by this cancer are really pushing it through on social media posts which is great for patients as well as for the charity.

I didn’t completely rest on my laurels, I had a bit of an input into a press release today from the Institute of Cancer Research regarding some new research specifically for bile duct cancer.

https://twitter.com/ICR_London/status/1227466379676278785

https://www.facebook.com/theinstituteofcancerresearch/posts/2896639183730344

https://www.instagram.com/p/B8dOre_qX3Z

I am totally not sure if it was my doing but world CCA day was picked up by ITV news today too….. I had alerted my contact last week about today and about this new discovery by ICR and was really pleased to see the extra coverage.

https://www.itv.com/news/2020-02-12/scientists-seek-breakthrough-on-bile-duct-cancer-resistance-to-chemotherapy/

So this is my pic of the day!! The sun shining on my Kuramathi beach bag holding vital requirements for the day like my knitting and morphine !!!! The day went smoothly and after coming home and having a nap, my evening went quite fine too!

If this carries on, I might get to squeeze in a little holiday somewhere and put my beach bag on the sand rather than on my hospital bed!!

This is my second world CCA day…. I will continue to spread the word, raise awareness and help anyone who connects with me over this harsh condition. Thank you to everyone who has helped me achieve this along the way. Together, we can achieve great things x