I've always taken the road less travelled, and it appears I'm now taking another. As far as the cancer road goes, I've already taken the rare route with the melon and its clear cell carcinoma. The night before I was due for my fourth cycle of chemo, I received a phone call from an oncologist - not anyone I'd met before, but I'd seen his name on a door. He told me the routine scan of my accidentally snipped ureters had shown lesions on my liver and pancreas and said the decision had been made to halt chemo while they investigated.
This wasn't news I wanted to hear and thought it was a swift recurrence, despite the chemo. I was booked in for a wig fitting after chemo and my dear friend Sue and I decided to go anyway and what fun we had. For a few hours I was able to experiment with different looks and forget about the reality of something nasty brewing in my innards. We laughed so hard my tummy ached. I finally decided on a slightly boring, blonde wig. Then we went to the South African butcher in Bristol and bought biltong and wors.
The only trouble with new wig is that when I put it on all by myself it looks like a dead Labrador on my head. I hang it on a round bolster at the top of my stairs. The first night I got up to go to the loo I almost had a heart attack and fell down the stairs when I put my hand on it. I moved it to my dressing table, but it looks like Cousin Itt from the Addams Family, which is even more scary.
I had an urgent CT scan and waited anxiously for the results. I was having a nap two days later when the phone rang for the fourth time following a string of calls from Indian call centres where they tried to sell me a new boiler, knew about my recent accident and informed me they were from Microsoft and there was something wrong with my computer. So when I heard another Indian accent mispronouncing my name, I sighed deeply, resisted the urge to slam the phone down and said 'Yes. What?' Imagine my horror when it turned out to be a nurse from the x-ray department calling to arrange a liver biopsy. That will teach me to racially profile on the telephone. Perhaps the years of being drip-fed Apartheid go deeper than I thought. I met the voice the following week. A delightful nurse who held my hand throughout and giggled with me as I tried to lie still without wriggling for four hours after the biopsy. It's not as easy as you think. She walked me out and we agreed we never want to see each other again. I'm hoping to avoid any more biopsies.
Three days before Christmas I received a call from my original Egyptian oncologist. I was expecting to be told the ovarian cancer had recurred but no. The biopsy showed a completely different kind of cancer originating in the pancreas. I've been handed over to a new team specialising in Upper Gastro-intestinal cancers and will no longer be under the gynae-oncology department. When she told me it's rare and very unusual, my first thought was, 'Yeah, but have you met me?' Why do I never take the road well-travelled?
I spent Christmas with my brother, his family and my cousins and their dog. It was lovely. I kept thinking 'This might be my last ever Christmas.' Staying positive constantly isn't always easy.
I met my new oncologist last week. He was very nice with some pleasing human-like qualities, unlike many doctors I've met who are more robot than human.
The news was pretty much what I was suspecting, but hearing it out loud wasn't the most fun time I've ever had. Thank the Lord for my wonderful friend Charmaine, who held my hand throughout. I have Stage 4 pancreatic cancer - adenocarcinoma, in case you're wondering, which has spread to the liver. The tumours are small and inoperable, but since they're still small that's 'good'. The routine scan was fortunate otherwise we'd never have known until I turned yellow.
I'm going to be starting 6 months of 2 weekly FOLFIRINOX in 2-3 weeks, which should keep it at bay and he said it will hopefully give me another 1-2 years, but nothing is guaranteed. Charming. Seeing the Disease control/Palliative box ticked on the form he filled in gave me a small wobble last night. I asked about the ovarian cancer and the chances of it recurring, and he said 'Pancreatic cancer trumps ovarian' #rollseyes. My new Clinical Nurse Specialist also talked about referring me to St Peter's Hospice. I put my fingers in my ears and hummed God Save the Queen. I wasn't ready to hear that yesterday. But she went on to say that since I'm so well at the moment (how frigging annoying is that?) she won't refer me yet. I actually feel better than I have in years and the longer it takes for them to refer me, the better.
I nagged them about replacing my PICC line with a porta cath, which would enable me to swim, as it's in the water that I regain my sanity. Oddly, not being allowed to swim, is the thing upsetting me most. I can cope for a while, but the thought of never being able to swim again is too awful to contemplate.
It helps to have things to look forward to and I have those. My brother will be coming to the UK soon, I pray, and my beloved nephew is getting married in October. I'll hopefully be finished chemo by then, so I can put on the bling and celebrate with my family. I was given a new Festive Fascinator by my lovely nurse for Christmas, which I think will do for the wedding too.
I'm still getting my head around it all, but do have amazing peace, brought on I'm sure, by the many prayers being said for me. When I say the words pancreatic cancer, people start talking to and looking at me like I'm Dead Woman Walking, and it's very annoying. I'm not dead yet! If you see me, please don't. I'm still who I always was and will continue to be her for some time to come.
Onward and Upward. I'm not going down without a fight.
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