Jump to content

lsaut

Members
  • Posts

    26
  • Joined

  • Last visited

Posts posted by lsaut

  1. What a week it has been! 2 round trips to city three hours from home, 4 hospitals in seven days, seven doctors, a CT scan, an X-ray, tons of blood work, a two night hospitalization and this morning, after leaving the house at 4 AM, dear stepdad had an ERCP and is home resting. Family and ER doctor thought painless obstructive jaundice and crazy bloodwork was a signal that cancer had spread to the liver. Oncologist was quite shocked to see that there is a 4 cm mass at the head of the pancreas that has been causing the jaundice. Also some slight growth in primary and other lung spots.

     

    When they did the ERCP and put the stent in the pancreas this morning, to hopefully help with the jaundice, they did a biopsy as well. This could be new pancreatic cancer or a met but apparently lung mets to pancreas are quite rare :S. Doctor agrees it will be good to know but isn't quite sure it will

    matter either way... Have confirmed this mass wasn't in pancreas in February.

     

    Bloodwork again tomorrow, and next Tuesday, and will see the oncologist again next Thursday. He's doing well but is nauseous and fatigued post ERCP.

     

    I'm struggling with what to do about work. I'm the full time caregiver and want to be there for him. Oncologist will sign my LOA forms (which state that there is a strong chance of death in next six months) giving me up to six months off to spend with him. I don't want to start it too early, and even though this past week had been busy, I know not every week will be. It's difficult to try to answer emails and schedule meetings when I never know what the next hour will bring. I know in my heart it's time but what a roller coaster. [emoji173]️

     

     

    Sent from my iPhone using Tapatalk

  2. As follow up, he admitted to me Friday night that he has white stools and dark orange urine. He's had hiccups for days and is still very yellow. Something must be going on with his liver. Helps explain the increased confusion as well, about which he is very defensive. Blood work tomorrow and I'm certain Tuesday the family doctor will be pressing the liver issue. I'll call the oncologist tomorrow morning as well. I am looking at startinf compassionate leave after Easter but will see what the next few days bring. 

  3. 2 hours ago, Meloni said:

     

    One thing I wanted to ask you about are his recent symptoms and health:  if I read correctly, he finished chemo in December, but has had continuous symptoms of a "cold" since that time. He met with the oncologist in February, but after that appointment occurred, his eyes and skin began to take on a green/yellow hue, his appetite has decreased, and his cough became more productive? I would definitely bring this up with the family doctor on Tuesday, but also, don't wait until May to notify the oncologist of these symptoms. I go to my oncologist regularly for symptoms. The oncologist cannot help if they don't know what's going on. <3

    Yes - we brought it up in February and understandably were instructed to keep an eye on his symptoms (at that point weight loss was very minimal and cough was less severe, skin was good). In the four weeks since that appointment, we went on a planned family vacation and upon arriving home Tuesday, I called his family doctor. He was so weak on vacation - we even used a wheelchair. This was a huge change and I know it was a shock for us all. He brought many meals back up on vacation, and I don't know if it was because of vacation, or the coughing, or new nauseousness. He's eating so much less in the last month. My worry is that his last CT scan, in February, was only chest and throat (where his tumours have been) but the last MRI was in August, so we don't know about mets beyond chest and throat right now. There are so many things that could be going on. I don't understand what bloodwork can or cannot show, and frankly, I haven't educated myself to the fullest extent on those details because there is just too much to know. I've left it to the medical professionals to guide us along. 

    My plan is to call the oncologist (or have the Family doctor call) after Tuesday's appointment. The oncologist is three hours away but is amazing and I know that they will help how and when they can. I'm delicately insisting that he see his family doctor (until now I've accepted his wishes to only see the oncologist regularly). I am not going to the appointment with him (I've only missed one or two in the last 1.5 years, but I think he needs to do this one on his own). The nurses are good to speak to me afterwards. I spoke to his family nurse earlier today and outlined all of my concerns. I was just notified that they are able to do a chest xray tomorrow and have ordered bloodwork for Monday. He is trying so hard to maintain his daily activities and functions but it is increasingly obvious that this is a struggle. Due to family turmoil, his divorce from my mom, and not having a huge social circle to begin with, he only has a handful of other people and honestly, it will be outside my comfort zone to reach out to them, but I am going to start doing so shortly. He needs visitors and unfortunately, I can't drop everything in the evenings and on the weekends, even though I want to. 

    I appreciate the responses SO MUCH. It's nice to know I'm not alone. Thank you. 

     

  4. I'm having trouble supporting my step dad right now. I worry he is in the final stages of his lung cancer journey. An oncologist appointment in February and a CT scan of his chest and neck showed limited progression, but things have changed. His diagnosis (of stage IV nsclc squamous carcinoma) was in December 2015. No timeline was ever given other than 6-8 months at that time and he's done so well since then. I made an appointment with his family doctor for Tuesday - will have bloodwork (he is also diabetic) and a chest xray before then. He is angry and doesn't believe he needs to see the family doctor. He hasn't seen him since October, only visits with the Oncologist in November/December and one in February. 

    We went on vacation last week. He spent several days in the hotel room recovering from the flight, ate very very little, and his skin and eyes have changed to a green/yellow colour. He is coughing much more and it is often productive, with nauseousness, especially after eating. He is blaming all of this on a cold, but he's had this "cold" since December (when chemo ended). His next oncologist appointment isn't until May. He is angry, irritable, and fatigued. Heck, so am I!  I am his daughter, full time caregiver, landlord, and one of few people in his life. I work full time in a demanding job, as does my DH, and have a three year old. Do I take time off from work now? Get more care? I am going to call our local hospice and find out about their services. His home nursing is on hold because it wasn't felt necessary once chemo was over, and he is generally self sufficient during the day, so I don't want to "baby" him with visitors and nursing, but I'm so worried. I'm lost. How do I deal with my grief, his grief,his care, my son's grief and everything else going on? I worry he heard DH and I talking about our fears the other day but I'm not sure. My marriage has suffered greatly but we are trying to hold everything together to get through this. I think we are in the worst of the storm right now. I know there aren't really any answers, but I needed to vent in a safe space. <3. 

  5. Likely a long shot, but figured I would ask. I'm getting overwhelmed trying to plan some trips for my dear step dad in the near future. He has finished chemo (just before Christmas) and is feeling good. He doesn't plan to do anymore treatment and is having a full scan and tests done at the end of this month. After we see the oncologist again, we want to be able to quickly go on a trip if possible. He would like to go South (Myrtle Beach or an all inclusive or cruise) and I would love to make that happen. Has anyone done this or are the roadblocks too great?

    Thank you!

  6. Hi Lily, 

    I'm so sorry you are going through this. Don't apologize for  your feelings - that is what this forum is for (IMHO). My stepdad, who lives with us, was diagnosed last December as well with Stage IV nsclc. He did five days of radiation after diagnosis, then chose to wait for progression before chemo since he felt well. He spent the summer golfing and still working full time. He is about to do his second day of IV chemo (he is doing four rounds, 21 days apart, with the last round on December 22). They call it "comfort chemo" I guess. Progression is really starting now. Honestly I'm overwhelmed and he hasn't even "really" started to experience what you and your dad are experiencing now. I know my work will start to suffer, parenting, everything, when all I really want to do is spend time with him. We talk a lot, at his pace, and I let him be angry or sad when he needs to be. We do normal activities to the greatest extent, and follow his cues. They say self care is important but like you, I don't know what that means or how to do it. Will your dad journal? I bought a "grandfathers'" journal that I gave to him a few weeks ago, I'm hoping he'll fill it out with some memories for my son. Is there a counselor or social worker you could talk to? Would journal-ling help you? I try to do as much as I can alone but we use volunteer drivers now and then and I have a cleaning lady coming in every two weeks just to take something off my plate. 

    We are in Canada, so we have the option of compassionate leave from work for up to six months, at a 50% reduction in wages. I may do this in the new year. It's so hard. I guess just let him know you are there, and take solace in the fact that you ARE ENOUGH AND YOU ARE DOING THE BEST YOU CAN. 

    I'm right where you are, although maybe a few weeks/months behind. Feel free to reach out if you think it would help. <3 

  7. Thank you everyone. I've started seeing a counselor on a monthly basis to work through some of the anxiety and guilt I'm feeling. Last week we had a great visit with the oncologist. Four new spots on the left lung since late November, but largest is 9mm. Another catscan scheduled for the end of August and next appointment after that. Dear step dad has decided not to pursue chemotherapy. His quality of life is really great right now and he doesn't want to spend the summer going through treatment. Will reassess in the fall. He was given 6-8 months in early December, and there has been almost no change in his health, so we are overjoyed! 

     

    I have asked my family health team to take him on as a patient for his palliative care when we get to that stage - so waiting to hear about that. 

     

    One day at a time! 

  8. Dear step father is in his late 60s and has Stage IV lc. Had five days of radiation in December but no treatment since. Oncologist has been happy with slow progression and appointments have been every other month since December. New CT scans are being done tomorrow with next Oncologist appointment in 3 weeks. DH and I work stressful jobs and long hours. We have a 2.5 yo, and dear SF moved in with us the day of his diagnosis. We had planned for him to move in before diagnosis, but it sped up the process. 

     

    I feel like I'm not doing enough to make his final months/year? (or maybe more!! fingers crossed) meaningful. I lose patience with him and my son more than I would like. I am full time caregiver to both of them, part time college student (required for career), and busy career woman. 

     

    We may find that I'll need to take a leave of absence from work once his health starts to decline. It already feels like most days are a struggle and he isn't even "declining" yet, although the last few weeks there has been more coughing, heartburn, fatigue. I'll be surprised if his next check up is as good as the last few. 

     

    We don't have other family members to lean on. I've hired a cleaning lady for every other week just to help me keep up on things. It feels like we are in "survival" mode, but I also feel like I'm not doing enough for him. He doesn't want things to change because of his lc. There is no handbook for this stuff. 

     

    I guess this is a vent more than anything. Just needed to put it all out there. <3  

  9. Christine - it sounds like your dad is very fortunate to have you visiting. Keep the pillow near by and maybe he'll eventually give in - just like with the market? For social media - how about a poster with a brief overview of whatever he is comfortable disclosing. This page has some great ideas... I love the ones about taking it one day at a time. 

    All my best, 

    Lianne

  10. My 2 year old came down with chicken pox over the weekend. I left a message for our oncology nurse and she called and left a message to say it's not a bad idea for my step dad to get the shingles vaccine. I'm getting conflicting information, however. I can't seem to get confirmation that shingles can be triggered by exposure to chicken pox, and the CDC website says cancer patients should not be vaccinated. Has anyone had any experience with this?

  11. Stage IV nsclc squamous carcinoma. I hope I'm saying that right. Main tumour is at the top of the left lung at windpipe. Many smaller tumours in pleura and spread to lymph nodes. DSD has decided to do radiation and chemo. Radiation starts next Thursday for an initial five days and then another possible five. Will target main tumour that is causing pain and swallowing problems. Then several three week cycles of taxol and carboplatin chemo. We will continue at the cancer centre three hours from home because we are very happy with the care and facilities.

    Will see how he responds to treatment and go from there. His doctor put it such that 50% of people being treated would see an improvement in symptoms or dely in worsening symptoms. And would extend life 6-8 months for that 50%. So we can hope. So far he is very positive and just wants to take each day as it comes. We will focus on trying to keep him healthy and happy

  12. Hi! I'm in a really similar situation right now. My step dad, who is absolutely my best friend, has just been diagnosed with lung cancer. Luckily he lives close by and will be moving in soon, so we spend a lot of time together, but it is so hard. I'm juggling being his friend, daughter, and primary caregiver.We are still waiting to hear treatment options - later this week. I hope Tom is right and your dad gets many more years and this becomes a bad dream for your family! Some days it is all I can do to put one foot in front of the other - you described the sorrow well. <3 Skype/Facetime/Call often... maybe send cards that will make him smile? I'm constantly trying to think of things to help keep his spirits up. 

  13. Meeting with an oncologist next week for the first time... I'm compiling a list of questions to ask, but want to make sure I don't miss any important details for my step dad...  in no particular order: 

     

    1. Pain management options 

    2. Can we have care transferred closer to home (current cancer centre is 3 hours away)?

    3. What type of lung cancer, stage, mets?

    4. Available treatment options? What would doctor recommend? Side effects of treatment?

    5. Can we get a copy of pathology report?

    6. What is the goal of treatment? Palliative care?

    7. What to expect next? 

    8. Special precautions as a diabetic?

    9. When to go the hospital or call doctor?

    10. How will progression be monitored? 

     

  14. Thanks for this. My step dad has just been diagnosed but I'm already embracing some of these - including asking for help. A friend is taking our big energetic dog for lunch hour walks for us. He needs more exercise than we can fit in right now and we are staying with a distant relative instead of a hotel before our appointments next week. 

  15. Thank you. I will most definitely post more details once we know them. It's hard, I'm not going to lie. I feel like I've been hit by a truck. Physical response to stress, I guess. We are so close and other than my husband or son, he's my closest person. It's pretty overwhelming... I'm trying to slim back my responsibilities as much as I can and just spend quality time with him. 

  16. I broke down and called today. They are still waiting for pathology results. They said likely today or tomorrow and then they will triage through the Cancer Assessment Centre and assign a doctor. That should happen quickly once the results are back. Fingers Crossed!

     

    I'm so glad that the nurses and representatives I'm talking to on the phone are willing to speak to me for bookings. It makes things so much easier for both me and my step dad!

     

    Decorating for Christmas this weekend - hopefully that will help keep his spirits up! He hasn't been too hungry this week but he's diabetic so I'm making sure he's eating small healthy meals. He's been really cold as well (it's damp here) so wearing long underwear every day is helping with that. He's been working lightly all week as well, but found that his normally busy day was really hard to get through. 

     

    I have concert tickets for the four of us (step dad, husband, and 2 year old) for the next two weekends - a kids concert and a fiddle and step dance concert the next weekend, so that gives him things to look forward too as well! Thanks for listening!

  17. It will be a week tomorrow morning since the biopsy was completed. All other tests were done before that. We still haven't had a call to book a follow up appointment. It is feeling like the longest wait ever. Booked a four day/three night vacation at a nearby ski village for over Christmas - gives us all something to look forward to. Will be going with step dad, husband, and young toddler. 

     

    Would you call and ask to book a follow up? I don't want to be too pushy, but would like answers. 

  18. Nothing new to update other than we had the MRI and biopsy last week. Have been told to wait for a call from the doctor at some point this week. He has decided to take a leave from work and move in with us. He has been in constant pain around the biopsy site (below left shoulder) and his back, and for now has been told to just use tylenol. Pain management will be one of the things I discuss when we see the doctor for the diagnosis and prognosis. He spent the weekend with my husband as my 2 year old and I had to be away, and apparently he asked 4 times within a span of 2 minutes if he could make my husband a bagel for breakfast. DH said it was quite unnerving :(

     

    I'll hopefully have an update this week! Thanks again. 

  19. That is exactly the approach I think we will take. I'm fortunate enough to still have some vacation days left to take him to these appointments and will look at time off in the new year if required. We have been in the process of trying to sell his house and renovating our basement since July for him, but I'm hoping he will move in even without the house sold so he can spend as much time as possible with my two year old son.

  20. Hi and thank you to everyone who replied. Today we had the bone scan and they fit us in for an unscheduled catscan. Thursday morning is the brain MRI and Friday is the biospy. I'm hoping they might be able to tell us some thing while we are in the city Friday, given that it's a 3 hour drive each way to the hospital, but I guess we will wait to see.

    The bone scan was really tough for him - he finds is very very painful to lie on his back.

  21. Hi, 

    I'm travelling tomorrow to appointments three hours away for my step dad, with whom I am very close. His rheumotologist ordered an xray in September, which prompted him to order a Catscan, and late last week we got a call from a Cancer Centre to come immediately (less than a week) for the following tests: lung biopsy, MRI of the brain, abdomen and chest catscan and bone scan. 

     

    He is obviously upset and so am I. I have no idea what to expect, but know he has been feeling poor for many months. Coughing up a lot of phlegm, chest infections, fatigue, and honestly I think he is confused a lot of the time. I can't imagine they would order this many tests if they didn't feel that something was wrong. 

     

    How do I support him through this without getting emotional myself? Waiting for answers is so hard. Thank you!~

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.