But I don’t have breast cancer…….

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!!

https://www.google.com/url?sa=t&source=web&rct=j&url=https://mobile.twitter.com/breastcancernow/status/1054979552001359872&ved=2ahUKEwjB4fHow-ThAhXnRhUIHeyhCGEQjjgwDHoECAMQAQ&usg=AOvVaw1aRpizx6lp3dg9v4bfQ-f4

https://www.google.com/url?sa=t&source=web&rct=j&url=https://m.facebook.com/breastcancernow/posts/10156903765985409&ved=2ahUKEwjB4fHow-ThAhXnRhUIHeyhCGEQFjAbegQIBhAB&usg=AOvVaw1AZ0WxJK0Iz-hZ8jcBAWlh

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.

https://www.justgiving.com/fundraising/sarah-dooley3

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 !!!

16 thoughts on “But I don’t have breast cancer…….

  1. Wow Sal, yet another awesome factual blog… obviously one I wish you never needed to write. I’m in awe of your bravery and ability to focus your research mind as I’m sure I would be hiding in my duvet right now… but knowing the person you are, I’m confident you’re gonna annoy the hell out of this Cancer! Loves you my pink sister πŸ’•

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    1. Thank you lovely for reaching out….. it is a difficult situation to be in but each day I have a choice … to hide in my duvet or live that day as best I can!! I’ve had loads of duvet days as and when needed. I get stronger as I go on and will bash the hell out of this cancer. Thank you always for reaching out and your lovely video messages… πŸ’πŸ’πŸ’πŸ₯°πŸ₯°πŸ₯°

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  2. Sal.. You will fight all the obstacles and back on track soon! You are truly an inspiration and doing amazing work with charities and your research will help so many πŸ’•πŸ’•Keep hold of your faith and strength and all will be well in the endπŸ™πŸΌπŸ˜˜

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  3. Informative and a big step. You are right of course, you’re not it’s statistic, you’re Sal and like the others in your new group your bodies have improved the old stats already. Can I share this ? I think it’s such an informative read xxxx

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  4. Never known such a strong and inspirational person like you. You write so well. I pray for a quick recovery and happy healthy days with your lovely family.
    May the almighty always shower you with his blessings πŸ™

    Liked by 1 person

    1. Thank you a million Komal…. your words are not just words but strength and support! When I am stuck in bed on chemo days, there is only so much you can do and even TV is too hard to concentrate on these days so hearing from you every time is precious πŸ’πŸ’πŸ’

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  5. I learn so much from every blog of yours that I read, finding the balance between being a Mum, research, duvet days and kicking the butt of this cancer can’t be easy, but you do it all with such style and grace that makes you a true inspiration x

    Liked by 1 person

    1. Thank you Zoe…. right back at ya!!! Leaning on each other through this ‘journey’ we are on πŸ’πŸ’πŸ’. I couldn’t do it without the love and support I receive xxx

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  6. Thanks for sharing your experience and for educating people. I love your writer’s voice and can hear the Sal from school through it. You were always tough! You make me feel positive, inspired and determined in my own life. Sending love. I hope today is a good day. X

    Liked by 1 person

    1. Thats great to hear Helen !! Although hard, I try to find a positive in every day x My 11 yr old keeps doing funny things we giggle for hours over it….. reminds me of us in school days !!!!! 🀣🀣🀣 A good day today….Il fait beau πŸ˜Žβ˜€οΈ

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