LouT Posted June 15, 2023 Share Posted June 15, 2023 Rikke, Good news on getting the A/C and don't hesitate to reach out to people that can help keep you from feeling alone and in despair. My last 11 months were pretty tough for non-cancer reasons, but what helped me get through were friends and family that wouldn't leave me alone (even when I wanted them to). You also have us here to share when you need to vent, rant, or just talk about what is going on. You're not alone. Lou Tom Galli, BBTN and ChiMama 3 Quote Link to comment Share on other sites More sharing options...
tgif i guess Posted July 2, 2023 Share Posted July 2, 2023 surgery is nothing to fear - the anesthesia is so much better now - its literally like a light switch - out - awake - no nausea do not be apprehensive - don't get any infections living without a/c is scarier cancer is scary - surgery isn't LouT and RJN 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted July 2, 2023 Author Share Posted July 2, 2023 A few more days to go. Had a lovely trip to Denmark - bit of seaside, cocktails in the harbour and a banging Depeche Mode concert. Also had a good chat with a beautiful and vivacious old friend who I discovered has lived on steroids for 20+ years and I had no idea - so that was encouraging. I am as ready as I will ever be, although nervous about cancellation like last time. Will try to fill up my days with golf and gardening. Send me good vibes please x JuneK, Tom Galli and LouT 3 Quote Link to comment Share on other sites More sharing options...
Pstar Posted July 2, 2023 Share Posted July 2, 2023 Glad you had an enjoyable trip and connection with old friend. Sending thoughts, prayers and a bushel of positive vibes your way. You’ve got this! Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted July 2, 2023 Share Posted July 2, 2023 Rikkie Sending good vibes your way young lady Chuck Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
JuneK Posted July 2, 2023 Share Posted July 2, 2023 All the best to you, Rikke! I'll be sending many prayers and good vibes for a successful surgery. Just think how awesome it will be to get the last of the cancer out. I don't want to minimize your concerns, but I would happily trade a lifetime of steroids for no cancer in my body! Best, June Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted July 2, 2023 Share Posted July 2, 2023 I am sure you energy is better after some Dansk Polser and positive vibes! Surgery is a drag but hopefully it will rid you of Cancer once and for all! We are all rooting for you! Good luck! Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted July 2, 2023 Share Posted July 2, 2023 Sounds like a great trip. It's interesting that you didn't realize your friend has been on steroids for such a long time! What's the day & time of the surgery? LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted July 3, 2023 Author Share Posted July 3, 2023 Thanks all! Means the world to have you guys backing me. Surgery is Thursday midday and will take around 4 hours if all goes to plan,,, LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted July 5, 2023 Share Posted July 5, 2023 I’ll be sure to be sending you courage and peace! You got this! Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted July 5, 2023 Share Posted July 5, 2023 Good vibes sent and ongoing! LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted July 6, 2023 Share Posted July 6, 2023 Rikke, Good luck with your surgery today...the surgery may have even happened already but, as you can tell, you have our whole group praying and thinking about you coming through this with flying colors. Can't wait to hear your updates. Lou Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted July 7, 2023 Author Share Posted July 7, 2023 Hello all! On the other side - it was a pretty big ordeal. I was under for a full five hours. Right adrenal came out a breeze, but the left which had been RT’ed was apparently quite a struggle due to various tissue damage, so took almost 3 hours due to adhesion and risk of surrounding tissue damage. Surgeon says he is 90% confident it’s all gone, but we won’t know for sure until a scan in month or so. So the hoped-for NED hasn’t materialised yet. The night was dreadful as I had to have blood sugar checked hourly. But around 6 this morning I started feeling normal and although tired, I am myself again. Hopefully I can go home tomorrow - depends on whether blood sugar and cortisol are stabilised. But obviously relieved to have come this far. Thanks all for your support, Rikke (P.s. at an American private hospital in a posh part of London. Interesting how much fancier it is than even the most state-of the art places under the NHS. Wonder if you all attend such hotel-like facilities?) LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted July 7, 2023 Share Posted July 7, 2023 Sorry Rikke it was not straight forward, must be frustrating! Did the surgeon get negative margins? Don't they check them in real time in such cases? I hear you about private hospitals. I had a little emergency surgery once in a small country and it was a bliss room. The care I got in Canada was top notch technically but quite bad when it came to hospital room. I hear our care is slipping badly now with starved public healthcare system and flight of healthcare workers. LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted July 7, 2023 Share Posted July 7, 2023 Good news Rikke! I hope your recover promptly. Stay the course. Tom RJN and LouT 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted July 7, 2023 Author Share Posted July 7, 2023 1 hour ago, LilyMir said: Sorry Rikke it was not straight forward, must be frustrating! Did the surgeon get negative margins? Don't they check them in real time in such cases? I hear you about private hospitals. I had a little emergency surgery once in a small country and it was a bliss room. The care I got in Canada was top notch technically but quite bad when it came to hospital room. I hear our care is slipping badly now with starved public healthcare system and flight of healthcare workers. Thanks Lily, no he didn’t mention negative margins. My understanding was that my left adrenal gland tissue was messed up due to RT, so he had to scrape it out rather than making a clean cut - complicated by the various vital organs nearby. As it was keyhole surgery the view isn’t as clear as open either. I have full faith in the surgeon and his abilities so guessing it was the best that can be done. and yes, we have similar concerns about the NHS (not helped by the lack of health workers due to Brexit) x LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted July 8, 2023 Share Posted July 8, 2023 Sorry that the surgeon had trouble with the left adrenal but hopefully he got it all. Catch 22 with the radiation…saves our lives but causes damage along the way. Hope you can go home soon….recoup so much better at home. LouT and RJN 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted July 8, 2023 Share Posted July 8, 2023 So glad to hear from you Rikke. 90% is a pretty good place to start. Now for the recovery and healing. I'm looking forward to hearing you getting stronger and feeling better each and every day. Thanks for the update. Lou RJN and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted July 9, 2023 Share Posted July 9, 2023 FIVE hours? That was a lot more than you-- or the surgeon-- anticipated. I'm sorry it wasn't as straightforward as you'd hoped, but the unexpected seems about par for the course with this goofy disease. The great news is the result. I'm with Lou-- 90% is a dandy start in my mind. I hope you are up and about soon, although that hospital sounds poshy enough that maybe you'd rather stay another day? (Only kidding.) So glad to hear from you. Tom Galli, RJN and LouT 3 Quote Link to comment Share on other sites More sharing options...
RJN Posted July 10, 2023 Author Share Posted July 10, 2023 Just an update: I am back home. Was hoping to just curl up on sofa with the cat, but he is peeved and rewarded me for my absence with a giant poop in the bath tub (he is an outdoor cat so very unusual), ate his lunch and then went out. Other than feline woes, I am ok. Not much pain, and a few paracetamols is keeping slight discomfort at bay. Feeling a bit shaky and traumatised though. After surgery my blood sugar went really mad, and I was on close monitoring, and now I am home and have to cope with a new regimen of steroids and blood sugar testing. Also my surgeon said he might discuss adjuvant radiotherapy as cleanup, so a bit apprehensive. I feel like I have had a pretty easy ride since the early diagnosis worries were over, so this is the biggest bump since those days. Glad to have this forum to vent on. x LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted July 10, 2023 Share Posted July 10, 2023 Rikke, Surgery is always traumatic but in your case comes with additional complications and management challenges. Hopefully you'll get stabilized quickly and stay that way. The adjuvant treatment can help to decrease recurrence from any stray cells, but I surely understand your apprehension. Stay strong as you are doing a great job through this. Lou Pstar and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted July 14, 2023 Share Posted July 14, 2023 Dang that cat! They are such opinionated beasts, aren't they? I'm hoping he's forgiven you and offering a few snuggles. The trauma of major surgery coupled with the uncertainties of what's next is really hard. I hope you are giving yourself some grace to just take it slow. It's OK to stay in your jammies and curl up with a book or have some naps. I always appreciate some good mindless TV. My current fav is a Netflix original called Is It Cake? I understand your trepidation about radiation, but I'm betting they can do this with several big zaps (Tom probably knows the medical terms for this.) The sugar thing: ugh. The steroids thing: I know this ride really well. For me, it took some time for my body to settle in, but when it did, life got much less complicated. I hope this happens for you sooner rather than later. Hang in. Your body is strong and your spirit will buoy you up. We're here for you! Karen RJN, Pstar, BBTN and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted July 15, 2023 Share Posted July 15, 2023 RJN, Adjuvant radiotherapy works! And, I'm a fan. If it is precision radiation (commonly known by 4-letter abbreviations like SBRT, IGRT, or IMRT), treatment will be a piece of cake, a walk in the park, or perhaps easy-peasy! (Not sure which British phrase means no pain, no strain). I doubt it would be fractional general radiation because it must be administered to 2 separate areas of your body. But, perhaps British medicine has adopted fractional general radiation for that purpose. This form of radiation involves daily treatments for say 6 weeks (M-F). Each day produces a fraction of the total dose. The first 3 weeks are no problem, but fatigue can set in during the last 3 weeks and becomes progressively more pronounced. If the object is to kill cancer cells, then radiation is your tool. If it hits the cell, it kills it and I like sure kill therapy when it comes to dispatching cancer cells. Stay the course. Tom RJN and LouT 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted July 19, 2023 Author Share Posted July 19, 2023 Thanks Tom, yes, I already had both 7 weeks general radiotherapy to my lung and 4 rounds of SABR to my adrenal. So if need be I’ll do it again to the abdomen. But obviously not what I had hoped for after having this surgery. During my own RT, I noted that the abdomen people seemed to have it hardest, since it is so rough on the digestive system. But I have faith in my medical team and will do what they recommend. Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted August 25, 2023 Author Share Posted August 25, 2023 Whoop whoop! At follow-up with surgeon this morning, I had my PET results. No active cancer! He did caution that I wasn’t completely out of the woods, as there was an R1 resection on the left side (I.e. they can’t be 100% sure there isn’t some microscopic remains of cancer). But for now, I will take it. Even a few weeks of being cancer free feels like a miracle. I didn’t expect to get a result (let alone a positive one) till my oncologist appointment in September, so a wonderful surprise. First time in all of this that I have actually teared up a bit. Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
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