Thank you all so much for your replies and encouragement. I appreciate every one and will stay connected for sure. I met my new oncologist yesterday. 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 appointment I've ever had. I have Stage 4 pancreatic cancer, which has spread to the liver. The tumours are all very small and inoperable, but since they're still small that's 'good'. 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 words 'Disease control/palliative' box ticked on the form gave me a small wobble last night. The new CNS also talked about referring me to St Peter's Hospice. I put my fingers in my ears and hummed God Save the Queen. Not what I wanted to hear 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.
The accidentally snipped ureter is a problem as I keep getting infections, so he wants that removed before I start chemo. More waiting. My beloved nephew is getting married in October and I'll hopefully be finished chemo by then, so I can put on the bling and an enormous hat and celebrate with my family.
I asked about the ovarian cancer and the chances of it recurring, and he said 'Pancreatic cancer trumps ovarian' and we had a little giggle. #rollseyes
Onward and Upward. I'm not going down without a fight.
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Melongirl
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With my sincerest thank you for sharing your story. I can only hope that when I hear those words like palliative and Hospice, that I can be as charming as you about it all. I so have a picture of you humming and rolling your eyes. October will be here before you know it especially since you are "doing so well" giggle. Stay strong and keep smiling through it all.
Im sorry to hear your news. I was wondering how you got on with your appointment. It must have been so tough for you. You appear to be a fighter and i wish you the very best when you start treatment. Keep being positive. It goes a long way. Roll on October and i look forward to hearing about your nephew's wedding. Xx
That must have been a tough day for you but you have such a strong spirit and positivity which will keep you going! It’s good you have a specialist that can converse on a human level, I am eternally grateful that my oncologist is easy to talk to and open about what is happening. Seeing the words ‘palliative care’ was a shock to me especially so early on in my journey that started in the summer of 2015 but I guess they have to categorise the treatment somehow! Keep your chin up and I look forward to hearing about the wedding!
Sorry to hear about your diagnosis, but keep up the humming and eye rolling..! ☺️ A healthy dose of humour and a lot of spirit goes a long way. Of course that's easy to write when you feel well, tomorrow my Thursday chemo side effects will kick in and then I'll just become a complete whinge-bag for 5-6 days, 'humour and spirit' will be in short supply 😂🙄. In the meantime, sending you lots of well wishes and hugs from Leipzig! Christina xx 🤗
As the others have said, your wonderful, spirited nature will serve you well. You deliver crummy news in a very entertaining way!
I too was 'labelled' palliative three years ago with the District Nurses rushing round with doe eyes assuring me they were here for me whenever I needed them. It was all very nice but scared the bejezus out of me!!! I fortunately have never needed them.
I would like to change your perspective on Hospices. They are happy, positive places that help people live well with life limiting conditions. Yes, they have tranquil, private areas when needed but I think you'd be surprised at the vibrancy and energy there is to help people cope with their symptoms. They offer alternative treatments, mindfulness and exercise groups whilst being aware of the symptoms that other non-specialist aren't aware of.
It doesn't sound like you need them at the moment but if mainstream services don't quite understand your needs then that's when the Hospice probably has a service to help. Their knowledge of symptom control is phenomenol.
Wishing you well with your treatment and back to good health
I too am sorry for your diagnosis. I was asked to sign a form saying I understood my treatment was palliative towards the end of 2013, not a nice feeling. A few months later I was referred to the local hospice. A Macmillan nurse came to see me & tried to persuade me to go to their day centre once a week for a few weeks. I refused, saying I wasn't ready for that sort of thing. She wasn't happy, so I agreed to go to their weekly drop in coffee morning to see what the place was like. I went a few times, & found the place bright, positive, & friendly. A few months later, my husband & I went on a positive living course that they do there, once a week for 4 weeks. That was very helpful. By then I'd also met some staff, & had a look round the place & a wander round their garden. I haven't yet been back since, but have no fear of returning. Di
Thanks for this. I have visions of rows of beds filled with skinny, yellow people lying in their own waste and moaning in pain. Must stop reading Victorian melodrama 😳. Seriously though , thank you for the clarification. I'm going to the Penny Brohn centre on Tuesday, which should be interesting.
Our local hospice has single rooms for all inpatients, & I think it unlikely that they would leave them lying moaning in their waste. And as an ex nurse, I know that hospice staff are normally experts at controlling pain. I hope you have a good day at Penny Brohn. I haven't been, but people speak well of the place. Di
What a terrible start to 2018 you’ve had, been diagnosed with pancreatic ca as well as previously having O.C. Life is extremely cruel at times. I’m not surprised you had a “little wobble” seeing the words “palliative” that must have been incredibly tough, it’s a wonder you didn’t have a big wobble! Sounds like your a strong, positive person which will help you through and having a wedding to look forward to at the end of treatment will give you a goal. Hope all goes well with your treatment. Jo xx
I have missed a few posts lately and only just read yours. I’m so sorry that you’ve had this news. What a hard day to have had.
You have been so strong and taking on this battle with positivity.
I hope you continue to feel well.
Look forward to seeing a photo from the wedding. Keep strong. Xx
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