Going commando : updates

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Hi you lovely lot! How is everyone doing right now? I have been busy. After a recent change in my circumstances, out of my control, I have decided to explore what my options are. I have contacted a professor, who is experienced with my type of cancer, and have now got a video call arranged for 8 April. I’m trying to be optimistic, but realistic too. I’m going to visit my local hospice today, finally. Update me when you have time.

  • The professor call sounds interesting!  Well done for arranging that.

  • Hi Jools, I hope your vidio call goes well. Me well plodding on as usual. Bloods tomorrow! Yes good Friday. Treatment  on Easter Monday, so having Easter next weekend lol. Let us know how you get on . Sending hugs xx



  • Hi Jools, I hope your appointment in April offers a little hope, and great to hear your going to your hospice today, If it's like mine you will love it. Had MDT last week, last years RT worked much better than hoped, HT extended 12 months, no other treatment offered as expected and still feel fine. Happy Easter. and take care, Eddie xx

  • Hi Jools

    Hope your visit to the hospice is useful and positive!

    I've just had a 9 day unexpected stay in hospital....came home on Tuesday. All my blood levels, kidney function etc went haywire, so it took some sorting out. I'm OK now, and glad to be home again. My cancer is still stable, as far as I know. Next scan at end of April. I'm going to be rattling though, with lots of new meds to get used to.

    I don't think I'd have the confidence to contact a professor...but GOOD FOR YOU! You don't get anywhere unless you ask! I hope it gives you some new avenues to try.

    Have a good Easter!



  • Thank you. I don’t suppose he’ll say anything different to my oncologist. But keeping my fingers crossed!

  • Thanks Moi. I’m glad to hear you’re still plodding along. Having bloods done, followed by treatment during Easter weekend! Couldn’t you have just sat at home eating chocolate eggs?Rofl

  • Thanks Eddie. My hospice is lovely! I met with a support worker and a community nurse. So chirpy and supportive! I’ve brought a leaflet home with various activities listed in it. I’m so pleased that your RT has done well, and that you’re still feeling okay.

  • I’m so sorry to hear you’ve been in hospital Kate. It’s bad enough when they’re planned visits! I laughed when I read the bit about rattling. Hope that doesn’t bother you. Everything crossed that your cancer remains stable. I was surprised by myself about contacting the professor! A few of my cholangio support group said they’d asked for a second opinion, as he’s got more experience. I did lose my confidence part way through the process, but used the old fashioned way to communicate. I phoned his private secretary and she was so lovely, and made it feel more manageable. I’m not very tech savvy, so reverted to old fashioned solutions to problems there too. I hope we can catch up again soon.

  • No I'm diabetic lol but I'll be naughty and have a Nibley. Hope you have a lovely Easter and have an egg ot two xx


  • I hope both the visit and the call provide useful info and help clarify your options. I haven’t had any systemic treatment since my immunotherapy related adverse event last September, and am still being treated for the consequences of that. Theoretically I should be off the steroids in about 7 weeks time but have had previous missteps. I had my 2 liver tumours ablated in February and will be scanned in May to see how that went. I then may have a decision to make.