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LouiseB last won the day on December 23 2019

LouiseB had the most liked content!

About LouiseB

  • Birthday September 22

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    Not a patient
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    Husband (patient): golf, reading, pottering in the garden.
    Me: golf, tennis, paddling, wildlife refuge volunteer.
    My intro: https://bit.ly/2I5SotX

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  1. All I would add as a heads up is to make sure her oncologist is fully aware if your mom happens to have a history of any kind of auto-immune disease, such as lupus, ulcerative colitis, crohn’s, etc., as immunotherapy drugs like keytruda may possibly cause a flare up. Sending best wishes to you and your mom.
  2. Hi Ted, The decision is of course yours alone, but I know you will find terrific resources, help and support on this forum. I certainly did! It’s helpful to hear others’ experiences, so I will just say I’m caregiver to my husband who had a lobectomy (robotic) in May 2018 having been (correctly) diagnosed with early NSCLC adenocarcinoma (stage 1, but restaged after surgery because it was larger than expected). Both his upper and middle righthand lobes were removed. We were totally guided by our amazing team of professionals and are grateful that that was our/his decision. I think the scariest thing about the surgery was that he felt absolutely fine beforehand (apart from an odd little crackle in his chest when he lay on one side) because it was thankfully found so early and he was/is otherwise incredibly fit...so the idea of having to undergo and then recover from major surgery when he was of course going to feel worse for a little while was daunting, however it beats the alternative by a mile! I wonder if perhaps recovering from surgery is part of your concern? If so, I can tell you that my husband recovered very well and quickly from his robotic lobectomy. He had adjuvant chemo infusions for 4 3-week cycles afterwards (because of the size they discovered during surgery) and was back to all his usual activities including golf within a few weeks of finishing chemo. Whatever you decide, know that you have found a place to come at any time for info and support. Do let us know how you are getting on. I wish you all the very best on your journey to full health. - Louise
  3. Hi Katie, Glad to hear your mom came through the surgery well. Yes, everyone reacts differently to chemo, so this is just my experience. My husband had surgery for adenocarcinoma last May and followed up with 4 cycles of chemo, Cisplatin and Alimta, starting in June and ending late August. I read up about all the possible side effects and was ready for the worst, but his journey was extremely straight forward. He certainly did suffer from tiredness and loss of appetite/nausea, but none of the other unpleasant side effects such as tinnitus, mouth sores, numbness. He took precautions to avoid mouth sores (what could be worse when you're already struggling to eat anything), by rinsing 2xdaily with a mouthwash of 1 quart water, 1 teaspoon salt, 1 teaspoon baking soda. I would recommend starting that as soon as she is on treatment, don't wait to discover that she has a problem. I've no idea if this stopped him getting mouth sores or whether he would not have got them anyway, but I'm glad we never got to find out, and rinsing as a precaution was no hardship. :) His blood work was always good on treatment days, so he never had to alter his schedule. The staff at his infusion center were absolutely lovely and the hours flew by. I hope your mom sails through each treatment day as successfully. He had very little reaction to the first cycle but the feeling of nausea and tiredness naturally increased with subsequent cycles. He preferred foods that were moist...for example plenty of sauces or gravy rather than chunks of food that required a lot of chewing. He was also only able to eat small quantities. A surprise to him as he's 6'3" with a very healthy appetite. I encouraged him to eat more frequently and to take in high-protein high-calorie foods in between what had been traditional mealtimes. As time progressed, we found soups and smoothies were the best way to get calories and protein into him. Liquid calories were easier to swallow, digest and keep down, especially during the last couple of cycles. There are various ranges of soups that are virtually meals in a bowl (meat, veg, etc.). I found recipes for high-protein smoothies that I made at home, but there was one at my local supermarket that he particularly enjoyed: Bolthouse Mango high-protein smoothie. My preference would have been to make all our own, but I was grateful just to be able to find something that he was happy to consume frequently. He usually has no interest in sweet foods or desserts, but during treatment he enjoyed the Melona range of fruit ices which he said were tasty and soothing. If your mom has to cope alone with getting meals, make sure she has plenty of prepared foods in the freezer or cans that take no effort to prepare, and high quality things that she can snack on. My husband had no desire to prepare any food himself, just the thought of standing over a stove or mixing bowl etc. made him feel queasy. I'm sure many others will have more hints and tips, and everyone is different as to what they like and how they cope, but I hope this helps to know you're not alone. Best of luck to you and your mom. Onwards and Upwards, Louise
  4. Hi Dlh, So sorry you have to go through this but, as you can already see, you have tapped into a wealth of knowledge and support here. My husband’s case sound similar to you: nsclc: upper and middle right lobes only, lymph nodes clear. He had his pulmonectomy (robotic surgery) at Queen’s in Honolulu last May 7. Yes, it was scary, yes it was painful, but all that passes. The nerve pain others have described is likely but can be managed, and my husband has none of that any more. He had adjuvant chemo (4 cycles of Cisplatin/Alimta) and we were happy to do it, for the extra feeling of security it gives. He went through the course extremely well. Although it’s unlikely anyone can avoid all side-effects, he was spared many of them, and we learned that many people tolerate the drugs pretty well, especially if you take all the precautions that are advised. For example, he immediately started daily mouth rinses to avoid mouth sores, and never had an issue. We already had an adjustable bed, which was extremely helpful. His pain was at times disconcerting. The nerve damage can cause referred pain in a totally different area from the incision. It helped when we realized this is not unusual. Also, as the incisions healed, he got some discomfort which was much relieved by me massaging the lumpy areas around the incisions. Since the end of his chemo course (August 21) he’s had 2 totally clear PET scans, and is back to everything he was doing before surgery and more. In retrospect it’s evident that the slow-growing tumor had been affecting his health, both physical and mental, for a long time without us realizing it; he is now healthier AND happier than he has been for some years. We could not be more grateful for the superb surgeon and nursing care, and for the knowledge, support and guidance of this forum’s members. This forum not only gave me comfort through knowledge, but also a platform to write my own thoughts and experience during my husband’s surgery and hospital stay, which was for me the loneliest and scariest time. Bottom line, take every bit of advice and be ready for some hiccups along the way, but know that your journey could be surprisingly smooth sailing, especially with your obviously upbeat and positive attitude, which is a huge advantage to you. Do continue to reach out to this fabulous community and let us all know how you are doing too. Onwards and Upwards! 👍 - Louise
  5. Dammit, sorry to hear this, Susan. Wishing you all the best with this latest hiccup!!
  6. I’m beginning to realize VATS and robotic are closer cousins than I thought. My husband goes into surgery early Monday morning, so we’re hoping for a smooth operation and no complications!
  7. Many thanks Bruce. I will definitely take that advice to heart! So glad to hear your outcome! Aloha - Louise
  8. Many thanks, Tom. Yes, wonderful to get tons of great information so quickly. I had read about Hope Lodge, but it seemed to indicate it was for cancer patients and caregivers to share a room, not just for caregivers while patients are in hospital. I will definitely contact them to check it out, mahalo! Interesting to hear of your Kaua'i experiences. The training definitely sounds like a tough duty! We will certainly plan for chemo, if necessary, to be administered on our island. I know of one or two oncology centers here, which I assume is where we might be sent for post-op treatment. I'm sure I'll think of more questions soon. 😎 Best wishes to you - Louise
  9. Oh my goodness, Lbelle, what a journey!! I'm so sorry to learn that you had to deal with such a turn of events, having expected a relatively easy road after the initial diagnosis. This is precisely the kind of thing I am concerned about for my husband, but I am grateful for all your details and to at least be prepared to deal with the unexpected, even though we are naturally thinking positively and hoping for the best. I'm glad to hear that at least the robotic surgery was easy to heal from. I was relieved when the surgeon said that was the route he was taking, and was quite surprised not to find more 'robotic' stories on this site. I did some searching but didn't turn up many posts at all, so thank you so much for your comments, and heads up about the pneumothorax too. Wishing you many lots better days ahead. My 40s are way behind me now, but I do still remember it was a great decade and I certainly wish the same for you!! 😎
  10. Aloha Bridget, Susan, Laurel, Steff! Oh, this is amazing. Thank you all for your quick replies and great information. It's interesting to hear different stories and suggestions. I had not thought about a wedge pillow and, even though it seems it may or may not work, I shall definitely order one. Living on a remote island, we have to order anything out of the ordinary online and get it shipped, so it's good to know this sort of thing in advance, and I'm sure I'll find someone else who can use it after he's well, or if he doesn't like it. I also hadn't thought about a shower chair. He might not need one, but I know we have something that is ideal if he does. I am hoping the drains will be removed before we leave hospital, but again it's good to be prepared and have some thoughts on how to deal with it (even a large raincoat in Kaua'i will not be out of place currently with the crazy weather we've been having!) 😛 I'm also grateful to know that he might have to have chemo after the surgery even though it's supposedly stage I-something. Again, forewarned is forearmed, and if he doesn't then that will be a plus. He is typically a pretty good patient, and very tolerant of pain. He will also be keen to get up and about as soon as allowed (if not before), so he won't need any encouragement there! 😆 He's gone through a neck fusion and two lower spine surgeries in the past 10 years and needed very limited pain meds, so I'm hoping he will do as well this time. The difference with this 'event' I'm finding so far is that, of course, this sucker is a very different being...what with wondering if the surgeon will find more than we bargain for when he's in there (like some cancerous lymph nodes when the EBUS showed they seemed clear), and then getting used to living with that background thought that it might rear its ugly head again in the future, it's hard not to let those worries drift into my mind at times, but I'm trying to stay positive and not mentioning my concerns to him - no point worrying about something that might not happen, right?!😎 With his other surgeries, it was just a case of get over it and forget about it. I know I can learn a lot from those of you who are long-term survivors and also caregivers. Just reading your stories and seeing how you are truly living your lives gives me huge encouragement that we can get out the other side of this and enjoy living again. 👍 Susan: Happy to know you've discovered and love our little island. Luckily, we live in Princeville which is on high ground and was very little affected in comparison to our poor friends in other parts, especially on low ground and in valleys where gentle little streams turned into raging rivers. Our garage flooded but not the house (by just one inch from the front door step!!). Sadly, our canoe club in Hanalei was devastated, but we will rebuild and no doubt be stronger for it! The couple of weeks since have been incredible. The community immediately jumped into action; everyone is pitching in to help those who are homeless or still trapped beyond Hanalei. A group of us spent most of Monday unloading and distributing the entire contents of a container sent from Maui residents - filled floor to ceiling and back to front, not an inch of space unused...everything from hotel-sized shampoos, food, water, baby food, pet food, cleaning supplies, all the way to chain saws and generators. On the north shore particularly, we are overwhelmed by the flood (poor choice of words, but oh well) of donations and help we have received. We've been supplying foods and everything else imaginable by boat and helicopter, but now they have one lane open sufficiently to take most things in by ATVs towing trailers. I'm so sorry you weren't able to visit this month as planned. Please let me know if you plan another visit and we can meet up. I shall keep returning to your comments above over the next few days and reminding myself of all the suggestions and words of encouragement you've given me. Thanks again. You guys rock!
  11. Hi Lbelle, I'm new to this site, and just found your thread, so I'm sorry I'm late to the game. How are you? What surgery did you finally get, and how have you been since? I've found very little discussion of robotics on this site yet, but it's early days. My husband is scheduled for a robotic lobectomy next week, so of course I'm interested to hear from others and to learn of any personal stories, pros and/or cons! I do hope your recovery has gone well. Best wishes, Louise
  12. I hope everything is moving along for you Paula. Just to add to the above, and for those who come after us, I can say we have had a similar experience. My husband has NSCLC and we've had the same feeling of urgency, while being scheduled for one test after another that seemed to delay the actual treatment (in our case: lobectomy scheduled for Monday 5/7). We are learning that not only is that typical, but that all these scans/biopsies/tests are important for the surgeon to be as well-informed as possible prior to and during surgery. Still, it ain't easy waiting. As to being a pest. I absolutely agree. I'm not good at that, but thankfully my husband is, and I'm learning from him.😉 For a simple cardio check he was initially given a date of May 11, which would have been 3 weeks after all the other scans/tests were completed, and surgery would not even be scheduled before that (with probably yet another 2-3 week wait after). I credit my husband with objecting to that date but, while still waiting for a call back, I must admit I decided to play the 'wife' card. I phoned and laid it on thick (OK, a bit tearful too). It was really nothing more than I was feeling, it's just that I would not normally show it, and would usually accept what I'm being offered. As others say, cancer, particularly in a loved one, is a game-changer! Anyway, upshot was, an exceptionally lovely consultant phoned a colleague to 'call in a favor'; the cardio check was done the same afternoon as the EBUS consult, and the lobectomy will now be done-n-dusted a full 4 days before that initial date of May 11! Wishing you all the best with your treatment and recovery, stay strong...and pushy!👍💪
  13. Aloha! Firstly, I'm delighted to have found this site. I've done a lot of reading since my husband was diagnosed, but now it's helpful to find an interactive site where I can read about real folks' journeys, and ask questions of those who have been or are going through similar experiences. My husband's diagnosis was confirmed March 20 2018, five days after his 64th birthday: adenocarcinoma, right lobe. We are so fortunate that it's been identified as stage I, and appears to be restricted to one lobe. We've gone through the entire waiting game as I guess everyone does: chest x-ray in February, 'cloud' assumed to be pneumonia, course of antibiotics that didn't work, CT scan, initial possible diagnosis, lung biopsy, confirmed diagnosis, PET scan (nothing else lit up), brain scan (nothing found, heheh!), EBUS biopsy to check lymph nodes (clear). The EBUS result was a huge relief, as the surgeon had said that if anything showed up he would want him to have a course of chemo first, which would delay the surgery... My DH (thanks for the abbreviation list!) would have been v upset by that as all he wants is to rip the sucker out asap!! The final pre-op hurdle was a stress test today to ensure his heart was strong enough for surgery (thankfully he passed with flying colors), and he is scheduled for surgery (robotic lobectomy) this coming Monday, May 7. While writing this, he just came in to show me the uneven shaved patches from today's electrodes; more than hirsute, he's bordering on gorilla-man, so we had a good laugh, and I said I'll probably get stubble-burn when I lie on his chest tonight! We live on Kaua'i, so have had to travel to O'ahu for several of the scans, and he has to fly over for the day on Friday for the pre-op. We will both go over for the surgery, so I will stay in a hotel while he's in the hospital. The extra travel arrangements and expenses of so many separate trips are a bit frustrating, but I guess that's often the same for folks on the mainland who live a long way from a specialist facility. However, we are so thankful for all the wonderful consultants, surgeons and medical staff that we have met so far, both on this island and O'ahu. Having read that many are diagnosed stage III or IV, and it's not often caught this early, we are feeling very fortunate indeed, but I still have worries and questions. I know that the robotic-assisted surgery is the least invasive type of treatment, and should provide the quickest recovery, but I still wonder what I might expect, as his carer, post-surgery, both in the first couple of days in hospital and also in the weeks and months ahead; also what is the likelihood of him requiring or not requiring any post-op medications/chemo etc.? Should I put those questions out in a separate topic perhaps, or is someone likely to see them here? Anyway, thanks for 'listening' and, again, thank you for this awesome support system.
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