I don’t have breast cancer. Been there, done that, collected those scars! I am no longer supported by the numerous pink fluffy charities. I had so much support in 2013. There are soooooo many charities for breast cancer, so much knowledge, so much research. I felt the support, help was there wherever I needed it. It was/is everywhere, well in my world anyway.
Now, I do feel like I am virtually standing alone with my medical team. But what an army they are, they are my support, my knowledge, my giggles!
I do have a new private group on facebook. They are my new support network, a wealth of knowledge, my hope. My new friends are mostly in the USA which is great… I get a different perspective filtering through from the oncologists there and an insight into the latest research going on. I know where all the top docs are, where the surgeons are and how to get hold of them!
So here I am now, cancer no. 2. Totally unconnected to the first. My cancer never came back, I am the gigantic unlucky sod that got a new cancer.
I always walked a lot, sometimes a bit of running! In Aug 2017, for some random reason, I went to the gp with a slight pain in my knees. Not even pain but a lot of rattling. My knees rattle when I go down the stairs!! Its quite annoying. I just wanted to get to the bottom of it.
I was sent for an xray and a blood test.I was called back straight away by my gp to discuss results and found that my liver enzymes were sky high. I was urgently referred to a gastrointestinal consultant at Hillingdon hospital. A CT scan was ordered and I was again called back to discuss results.
Aug 2017, a new cancer was suspected…..and I was referred to another specialist at Hammersmith hospital for further tests.
2nd Jan 2018, 9am, I was called for an emergency MRI. 9 days later, I was told that there was a cancer but further tests were needed to locate it as my scans weren’t that clear.
My world once again was turning upside down, my head spinning, fear creeping in taking over every moment of every day of every week. I thought, this was it…. I didn’t know if “one” could survive a second cancer. The waiting, the tests, the scans. We kept most of it to ourselves, at this point, we didn’t really know what we were dealing with but it was in the gastrointestinal, hepato-biliary department, that was a big mouthful for a start!!
Painful investigations went on for months and in June 2018 after my 5th procedure, a lesion had been found in my bile duct. I took this as a positive. If I had a massive tumour, it would have been found straight away…. but it wasnt. I never heard the word tumour, it was always referred to as a lesion so thats what I stuck with!
Surgery was scheduled immediately to have the lesion removed. To remove the lesion meant having 50% of my liver removed, the bile duct in question removed and remaining ducts re-jigged so that my liver could function normally. I was in theatre for about 6 hrs. When I came round, my surgeon came to me and told me that he had not done the resection that was planned as he had gone in with a camera and discovered that there were specs on my liver which were about 0.5 mm and specs on my stomach lining. Due to the tiny size of these specs, they were not seen on any scan. Again, these were referred to as specs, not metastases, not spread, not secondary….. just specs. So we refer to them as specs. Just tiny specs!
The specs on my liver were removed and sent for biopsy while I was still under anasthetic. They had come back positive for cancer.
So there we have it…. 4th Oct 2018, I was diagnosed with stage IV Bile Duct cancer or Cholangiocarcinoma.
For anyone that knows about the breast cancer campaign I was involved in with the charity Breast cancer Now and M&S, this was all happening at the same time. I thought it was best to keep as busy as possible….. it was my coping mechanism!!
It has taken me this long to be brave enough to write about it or tell folk what I have. I had breast cancer, this one totally unconnected…. how unlucky do you have to be to get a second cancer. I was cushioned and protected for so many years by the ‘pink charities’ of which there are many! Now suddenly, I felt isolated, not knowing where to go for support…….I’ve been campaigning for years, creating awareness, raising money telling friends to check themselves, be breast aware, it can save your life. Now what? I felt like a bit of a phony. What is my advice now? Everyone go to your gp and have a blood test and check your liver enzymes? Not knowing where to go with this one….. I just kept it pretty quiet for 15 months until chemo started.Cholangiocarcinoma is a very rare cancer, one of the top 10 rarest out of the 195 cancers. It affects mainly older people and statistically doesn’t have a great outcome.If you search or check with Mr Google, check this first…..most sites will state that it is a disease affecting people over 70.Well there are just under 950 people in my group and we have got our own stats….. the real ones. Here is the age range:
Don’t believe everything you read but use it as your guide. A good team like mine will not smack you over the head with the stats or prognosis ….. their job is to treat you not scare the crap out of you…… a topic for another day!!!
So me trying not to create a big panic and getting hold of this first decided to keep it to myself until Nov last year.Why now…because social media is an extremely vital tool for me. The more I speak out, the more I connect with others in the same boat.Now is the time, if anyone can beat this, I can!
I have booked myself on a 3 day conference in May with oncologists, nurses and patients specifically for this cancer. This will aid my research further and open up new leads, arm me with all the information I need and give me an insight into the latest research and clinical trials that are currently being conducted. Hopefully I will connect with other patients in the UK and not be the youngest one there!!
So there it is….. bastard Cholangiocarcinoma! Getting through it one week at a time! I’m very much looking forward to the conference, joining the charity and will be raising money for them.
My lovely friend Sarah will be going for a run to raise money specifically for this charity!!!
Lol…. it is the London Marathon but Sarah fly’s through marathon’s. True friends help in many different ways.
Cholangiocarcinoma is green in the USA but purple in the UK. There is only one charity in the UK for Cholangio and I will concentrate my charity efforts there in the latter half of this year.
Up to now…. my thoughts are along the lines of should we spend a million to save the lives of a million people with breast cancer, or spend a million to save a few hundred people with bile duct cancer. I actually questioned that with the outcomes of this cancer, but no, every life matters. You can’t put a price on that. I wish to live and see my kids grow, I matter, I deserve as much of a chance as someone with breast cancer so I will now fight my corner and even try and get awareness/funding from some of the bigger cancer charities.
Anyway one step at a time !!! I guess I have had bile duct cancer for a minimum of 18 months already and if we look at the whole picture….. I’m really not a normal statistic!!
https://mybeautifullife.org/2019/03/08/dear-cancer-world/Let’s concentrate on me getting to stable disease first !!
Happy Earth Day……Happy me still being on it !!!