Cancer, what a nasty sounding word. So many times over the years I've heard it and thought oh no you poor love, I've sympathized with those diagnosed and on too many occasions I've lost family and friends to this insidious disease. But my blood relatives thankfully have never been tarred with this brush.
Then in June 2016 those words I never expected to hear were uttered from the lips of my liver surgeon, and I truly believe she was also shocked to be reading them to me. Life as of today would forever change for me and my village.
In February 2014 we had returned from our annual family holiday to the York Peninsula in Sth Australia..
A niggling pain in my lower left side had me on the phone to my physiotherapist, at first we thought it had been the way I was sitting in our caravan while watching television.
A couple of weeks of treatment and nothing had really changed so Jon suggested I see my G.P, the usual pushing and probing on my stomach didn't reveal much so next step was to be referred to a gastroenterologist. Scans were ordered and revealed a 'fatty liver' ... why not? I've struggled with my weight for most of my adult life even though I believe I have a healthy diet. So not fair, another issue to deal with. Drs orders were to watch what I eat and try to improve the liver. I did weight watchers, I lost weight, got a bit fitter but in 2016 the pain again returned while we were on holiday again.
Skip the physio and head straight to the G.P who again refers me to the gastroenterologist. Naturally more scans are ordered and this time he has ordered contrast dye M.R.I. Durng this procedure on March 22nd (my son and grandsons' birthday) I began to feel a tingling sensation on my lips, then a slight itch in my throat. The radiologist picked up on it and whipped me out of the scanner so fast I had no idea what was happening. Before I knew it I was surrounded by nurses a doctor and paramedics! Of course, I had a severe allergic reaction to the dye and was rushed to hospital. Thanks to a great team I recovered but am unable to have the gadolinium dye again.(very rare reaction, one in a million)
Results are in and my fatty liver spot has grown, not much, but it has grown. Dr. A is unsure what to do so he consulted with other specialists who agree I should see a liver surgeon for further investigation. Dr. N also is unsure what is happening so she to consults with her team and even though they all say they don't believe there is (in their words) nothing sinister, it is suggested I be admitted for surgery to have half my liver removed ... big operation, but in 6 weeks it grows back and at least we will know whats happening. Gallbladder and Bile duct were also removed and I felt ok considering.
10 days later Dr. N stood at the foot of my bed with the results in her hands, she opened the paperwork, read it, then with a look of surprise looked at me seated in my chair and almost whispered, it's bile duct cancer.
I took a deep breath as my world stopped and said o.k, so where do we go from here? I couldn't believe how calm I was. She said she would make an appointment for me to see an Oncologist in a couple of weeks.
She apologized for having to give me such horrible news but assured me that 25mm surrounding tissue was clear of this disease, and that she had a lot of faith in Dr S and I would be in good hands.
An appointment was made for 2 weeks time, but his rooms rang and asked me to come in a week earlier... now I'm scared, my thoughts are all over the place, she said 25mm clear, so why is he wanting me in early? Perhaps he had double booked, maybe he was going away... oh no, maybe it's worse than I expected... that was a longgggg week to wait.
My village accompanied me to the appointment, my husband, our daughter-in-law who is a nurse and speaks medical language and our 5 yr old grandson Gabe. I approached the desk and introduced myself then was given what I refer to as my 'showbag' a big brown bag filled with leaflets, booklets and pamphlets on living with cancer! I looked briefly into the bag and thought, silly bugger, I don't need this, they got it all, I'm ok.
We hadn't been sitting long when a gentle man called my name and we were ushered into his room, I don't remember much of what was said apart from the fact that on Friday I would be beginning chemotherapy once a week for 6 months, no I wouldn't lose my hair, but I would become tired and there would be other side effects such as nausea, sleeplessness, itching skin, burning sensations, dry mouth... the list went on and on but I needed to pull up my big girl panties and get ready to fight like I've never fought before.
I have 4 sons all married with children, 8 grandchildren now, I married my Tony when I was 16 and I'm now 61. The support came from everywhere, friends, neighbours, oncology staff, they all began part of My Village.
Treatment was easy, first I needed to have an operation to implant a power port as my veins aren't great for accessing, and then treatment began. The first 6 weeks I coped well, but I was beginning to feel very tired, Dr. S suggested having a break for a week, this then became a common pattern until 2 weeks before my final treatment when it was decided I had enough. I had become so tired that I tried going to a cancer rehabilitation centre in town, to build up my strength, but sadly I failed the first test of seeing how far I could walk in 6 minutes. I laughed when she said how long I had to walk, I said good luck, I'll probably be able to walk for 2 minutes but anything after that... hmmm we will see.
Well I was right, I ended up with my blood pressure going through the roof and leaving in an ambulance with paramedics saying 'Jo, if you hear we go to lights and sirens, don't panic, we are right here) don't panic? Omg what's happening? On arrival at the emergency department I was whisked into a room and people were everywhere poking and prodding, assuring me I was in the best place and in good hands. Before long my husband and one son were by my side and I began to feel safe. I went home that night knowing I was fine, just absolutely exhausted.
Every 3 months I have scans and all was well until February 2018 when 3 spots showed up on my lungs. Dr S decided that as they were small and appeared to be slow growing we could wait a while and see what the next scan showed. 3 months later they had grown slightly about 1mm, thoughts turned to treatment and he requested for me to do a clinical trial of immunotherapy which would last for 2 years but.... if it didn't help we were still early days and chemo would be available.
September 2018 I was lucky enough to be accepted as the last person on the trial. First week was a blur, bloods, scans, ecg, urine and blood pressure monitoring and of course the infusion of immunotherapy. This continued for from memory 5 to 6 weeks with New Years Eve being my last treatment of this round. February scans showed of the 3 spots one had stayed the same, one had grown a tiny bit but the third had shrunk!!! Ok it's just a little shrinkage but everyone is pleased, especially me. I will continue having infusion once every 3 months followed by close monitoring with scans etc.
I asked my clinical nurse S what happens after the 2 yrs are up? As the cost of each infusion is rumoured to be around $20,000, something I could never afford. Her answer was pleasing, if it works they won't stop it.
In the beginning, apart from the people we had lost to cancer, I felt isolated, most people stood by me and have become precious members of my village, sadly some who I thought would stay forever have drifted away, perhaps they're scared, but not as scared as me!
One special lady I met on Facebook has become one of my dearest friends, she was diagnosed with breast cancer around the same time as me, and although we are separated by 700 kms and a border we are blessed with an incomparable friendship, we really do know what each other is going through. She had chemo Thursday, I had Fridays, in the middle of the night when my skin was burning or itching, if I was struggling to sleep I'd turn my phone on and she was there going through exactly the same. Sue surprised me on Valentine's day, my birthday, her brother drove her over to visit me for a wonderful weekend, and last week one of my dearest friends co-drove with me to surprise her in Victoria! My profile photo is of us and part of our support teams. Unfortunately since my diagnosis three more close friends and my brother-in-law have also been diagnosed. One has responded well and apart from follow ups has avoided the dreaded waiting rooms.
This coming Monday, April 15th I begin the next cycle of treatment, fingers crossed it continues to work it's magic.
I hope the story of my journey helps others who are travelling this bumpy frightening highway.
Surround yourself with positive people, accept help when it is offered and listen to your body, don't feel guilty if you need to rest in the middle of the day, if the bed doesn't get made or the dust settles in. They're not important....you are!
Bile Duct Cancer can start anywhere along the bile ducts. It has different names depending on where it starts, and symptoms depend on where it grows.