Some Positive News

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The oncologist called me yesterday with some good news. The tumour indicators in my blood are down from 15,000 to just over 900. Feel confused about what that means? You aren’t alone, but it sounds good, doesn’t it? “It’s the most positive sign that we can have at this stage that the chemotherapy is having an effect on the tumour,” he said. It was followed by the usual caveats and expectation-managing jargon, of course. “It doesn’t guarantee that the scan will show a reduction in the size of the tumour,” I tried to resist rolling my eyes. Just give me my 5 minutes of unabated hope, damn it.

It is the first ‘breakthrough’ that I’ve experienced. I realise that it is not a true breakthrough, but it is the first piece of positive news I have received in The Road to Recovery. I’m reserving my right to refer to it as a breakthrough. I may even say it has given me some hope… but that would be far too eager. Being truthful, though, it does provide me with hope, which also worries me. I managed to relieve myself of some positivity last night, though. What a relief…

Waking up in the night has become a benign reality of my life these days. Usually, I wake up, look at a few things on my phone, put it down again, then fall back asleep. Simples. Occasionally I get a night like last night, though, where I wake up and don’t sleep again. I sat up in bed and knew it was one of these times. I left the bedroom and came downstairs to the lounge, wrapped myself in a blanket, and sat under cover of darkness for a while. Initially, I thought I may fall asleep if I gave myself nothing to do, but it wasn’t to be. I grabbed my phone and decided it was the perfect time to start Googling about the Whipple’s Procedure for some reason unknown to me.

The Whipple’s Procedure is the only known cure for pancreatic cancer. Or so I thought; I read a story on Pancreatic Cancer Action’s website where a woman named June Simpson was cured using chemotherapy alone, which is interesting. Perhaps this is a rarity, so oncology teams are not generally speaking to patients about it. I will be investigating it further, though, now back to the Whipple.

I sat reading about the procedure, feeling any positivity I had mustered drain from my being. Despite its cheery sounding name, it is a scary procedure. The head of the pancreas, gall bladder, some of the bile duct and the top of the small intestine is removed. I believe its primary aim is to remove as much of the area as possible to give the best chance of removing all cancerous cells and stopping any more tumours from growing. Pancreatic cancer is an aggressive beast, though, and I believe it is common for a tumour to return where some cells are missed. That is why it is so crucial for chemotherapy to provide visible results against the tumour, as it proves that it is having a positive effect on getting rid of the cancer cells.

Next up, I tried to find some success stories of younger people who have been through the procedure. This, unfortunately, didn’t turn up many results either. I’m still not sure if this is because my case is rare. Perhaps the procedure has not been around long enough to have such a case. I saw mention of it in a paper from the 80s, though, which makes me think there should be a case study of a 30 or 40-something getting it and surviving for 30 years. I didn’t find it if it existed, and the dread was setting in. The middle of the night blues was upon me, and there wasn’t anything I could do about it. It isn’t fun when it’s your cancer on your mind. I did what any respectable 28 year old would do and rang my mum. She was upstairs in bed. I asked her to come down and sit with me. Nice Dan, you’re officially 12 years old again. I should have asked for a hot chocolate and sat in anticipation, waiting to see if she put marshmallows in just to make it extra special. We sat up together until 7am when I attempted to get more sleep.

I’m now left with a plethora of questions about it all. Does the Whipple procedure significantly impact your life expectancy but allow for a longer life than leaving the cancer to spread out of control? Can you survive for a long time after having the Whipple procedure, or is this currently unknown? Is it possible that chemotherapy alone can cure pancreatic cancer? I know that I can ask my oncologist these questions, but I would really appreciate some feedback from other survivors or people who have experience with pancreatic cancer. The internet is dangerous when wanting straight answers, especially where cancer is involved. I did not have much to show for my web-wandering last night, and it left me feeling somewhat overwhelmed about everything. I have yet to find another example of a 28-year-old getting pancreatic cancer at all, but I was warned by the oncologist that this was an extremely unusual case.

But let’s finish by emphasising the positives here. My tumour indicators are down, and we have to assume that is good. The oncologist certainly thought so. The first scan will be booked for the week commencing February 7th, just after my 6th session of chemotherapy. I should receive the results that same week. He also informed me that I would continue with chemotherapy, irrespective of the scan results. I thought this would dishearten me, but the chemotherapy gives me confidence that I am fighting back against the cancer. All of the negatives I feel on my body are indicators that those cells are struggling, which gives me great pleasure. I’d take 5 years of chemotherapy if it was likely to give me a life afterwards, so bring it on. I’ve run 100km in the hilly Scottish countryside in November; I can sit around my house feeling crap quite comfortably. So fuck you, cancer.

The following words were written to me on a card by some very close family friends. They’re some of the most powerful words I have received. I like to remember them when I am feeling down, and they always lift my mood again.

“You have been assigned this mountain to show others it can be moved.

Know that cancer is only going to be a chapter in your life, not the whole story.”

18 thoughts on “Some Positive News”

  1. Kathryn Moore says:

    What a lift the call from the oncologist must have given you. That level of cancer markers reduction seems so positive. You must be going through every known emotion that is possible but definitely allow yourself to feel positive when you get any good news. What a great quote from your family friends. You certainly are showing others how to deal with this with dignity, bravery and hope. Hold on to that. Willing you to get better. All the very best.

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  2. Thank you Eric! I just commented on the post before thanking you, will this suffice? I can add another comment if needs be. I really can’t thank you enough for that post – it’s made me happy beyond words this morning. I’m just leaving for another day of chemotherapy treatment and I have the biggest smile on my face. You really have made my day, week and year (so far 😁)

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  3. Hi Dan, I just saw Dr. Perry’s post about your blog. I’m glad to meet you and to learn more of your story. Cancer is a scary diagnosis and reality to live with and you are doing it bravely. Nice blog title…ebb and flow is so true about life. ~ Esther

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    1. Welcome Esther. It is a scary diagnosis and certainly not one I was expecting. Thank you for your kind words! Ebb and flow really is true about life, it’s a beautiful phrase 🙂. Take care and I look forward to interacting more. Dan

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      2. It’s a scary concept that doesn’t quite feel real for a while. I remember sitting in my first chemotherapy session only 10 days after receiving my final diagnosis and thinking “how has this happened”. We adjust quickly though, that’s one amazing thing about human beings! I can’t remember my life without the cancer now, which is a bit depressing but also, in a strange way, comforting. Have a good weekend :).

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      3. It’s human resilience and amazing coping mechanism!! Man, what an experience you’re going through.
        I found out my unborn daughter had half a heart at the 20 week fetal ultrasound…that moment changed the course of our family’s life. I have my days too although I’m not saying it’s anything like yours. But seeing your kid hurt is heart wrenching.
        Your positive outlook is inspiring!

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      4. I’m so sorry to hear that, that is really hard. It is similar in the sense that it is pain and it takes resilience to fight through it. I hope you and your family are happy despite those challenges. I read your post about challenges actually – it must be nice to learn what your children find challenging and how it differs to you. Conversations with adults were scary when we were small I guess – it’s hard to remember that now. All we do is talk to adults :).

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      5. Thanks for your kind comment and for reading my post! I’m often shocked that what I perceive as insignificant is the opposite to my children. It’s a reminder that I need to stay open and not biased. Raising kids is hard work and constant stretching of myself.
        Agree that talking with people bigger than you can be scary. But getting over that fear can be empowering. Sometimes I have fears talking to some adults. hahaha

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      6. Yes definitely. Keeping an open mind and having good communication (which can get difficult during the teenage years – I have 5 siblings so I saw us all go through the ‘shutting down’ phase for a whole haha) really helps I think. I’m not a parent though so I’m really waffling here 🙊.
        It is definitely empowering to get over that fear! And some adults really are scary. I met a few very intimidating ones in my last job…so who can blame your children really 😬😃?

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      7. Your last paragraph made me laugh loud…isn’t that true? There are some scary adults out there.
        Adolescence will come soon enough; I’m slowly preparing my heart for those days. Must not take it personally and remember what I was like as a teen.

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  6. douryeh says:

    In this country, every year in the holiday season, ‘Lord of the Rings’ comes on tv. Probably it’s seen as a motivational movie. This fragment stuck with me: Frodo says ‘I wish the ring hadn’t come to me’. Gandalf replies: ‘That’s what all say who live to see such times. But it’s not up to them to decide. What you do with the time that’s been given you, is what matters’. I think about it in the back of my mind. Further. Medication and knowledge now have improved a lot. Chanced for survival are much better. I wish you strength and the very best.

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    1. Very good quote! And great comment. Thank you very much. I’m feeling positive and my oncology team are great so I know I have people fighting for me. Take care and thanks again for the lovely words. Dan

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