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How Are All The Caregivers Doing?

Re: How Are All The Caregivers Doing?

Posted by Brighty on Aug 29, 2020 5:36 pm

MLA‍  yes.   Very normal.    Happened with my fiance  too.   He was such fun loving guy with a sense  of humour  and he became  a different  person.     Partly due to exhaustion from treatment  and partly due to depression.    Is his oncologist  aware ?  If he is willing to , he might want to talk to the oncology social worker.    Mine was unwillng so I talked to her.   I found it so helpful.    A lifesaver.   How are you coping?   Do you have a support system? 
Help is out there. All you have to do is reach out.

Re: How Are All The Caregivers Doing?

Posted by MLA on Aug 30, 2020 9:21 am

Thank you for your help. This whole experience is so  new to us. And with Covid it is difficult  to know what services are available to me particularly at the hospital. I will certainly suggest that my husband talk to a social worker.  For now this is my support system.  Here's hoping things will get better.

Re: How Are All The Caregivers Doing?

Posted by Charlie1 on Sep 4, 2020 11:10 am

I am coping a bit better now found that I need to take time to exercise and go out to just walk! 
I wanted to share something that happened to my husband who has terminal met stomach cancer. He had a dentist's appointment, not with his usual dentist but a new one. The oncologist told him to let the dentist know he has advanced cancer and that he is receiving chemo. My husband has been having issues with his teeth since the chemo. He did tell the dentist this and she then told him he needed a couple of crowns and a root canal. My husband said let's hold off on the crowns for now and she said do you want to die is that what you want? to die and said oh he wants to die. If you have the crowns done you will live. I was not in the room as we are not allowed or she would have been shut down right away. She kept repeating it over and over to him until he was upset and ready to leave. My husband is a very kind patient man and it takes a lot to get him upset. He finally looked at her and said you are being very rude and you need to stop. I guess then she realized how she sounded but still when my husband was on his way out she said if you are alive in a year I will pay for all your crowns. I did not know this until we got home and I wondered why they said there would be no charge for the root canal as what your benefits do not cover the dentist as offered to pay the balance. I have never been so shocked in all my life that someone would talk like that. He was doing really well and we were being really positive enjoying life and now he is feeling quite down. Repeatedly she asked him if he wanted to die in an almost taunting way he said. 

Re: How Are All The Caregivers Doing?

Posted by Brighty on Sep 4, 2020 2:36 pm

Charlie1‍  that is disgusting!!!!! I dont think the dentist  should be allowed to get away  with what she said.    Perhaps  reporting her to... I'm not sure who... the college of dentistry?    It was unprofessional  and totally insensitive.      
Help is out there. All you have to do is reach out.

Re: How Are All The Caregivers Doing?

Posted by RedWaterLily on Sep 5, 2020 2:05 pm

Charlie1Lianne_adminCCS‍ I also agree that you should report the dentist to the authorities. What she said was very unprofessional not to mention being insensitive!
My husband diagnosed with stomach cancer recently, and started chemo treatments last month, treatment plan was to get chemo every 2 weeks. He treatment was scheduled today, but after the blood results, he was informed that his platelets count is too low, and his treatment has to be postponed to next week. I'm wondering if this happens to anyone out there? Is there any food, drink or supplements that my husband can get to improve on the platelets level? Or is this something that the hospital has to adjust the chemo medication?

Re: How Are All The Caregivers Doing?

Posted by Lianne_Moderator on Sep 5, 2020 6:24 pm

RedWaterLily‍ 

When I was going through breast cancer treatment, I was supposed to do chemo every 3 weeks. But a couple of times my white count was too low so I had to wait a week. I believe this is quite common. In my case, I was eager to be done with treatment and back to work ( Don't ask me why lol - just wanting to get back to normalcy I suppose ) so I was given an injection to stimulate the white blood cells. However, it was very expensive and left me in the fetal position with severe bone pain for 4 days. So after that I just waited it out.That essentially is the chemo doing it's job. I think they also decreased the dose for me one time as well. Good questions to ask at the next chemo appointment. Fingers crossed they are up for next week.

Lianne 

Re: How Are All The Caregivers Doing?

Posted by RedWaterLily on Sep 5, 2020 9:49 pm

Thanks Lianne_adminCCS‍ !  It's just so worrisome to feel that there's nothing I can do other than wait it out! Specially I feel that time are wasting away!  It feels a bit comforting to know that it's common though.  Thanks!

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Sep 6, 2020 8:17 am

RedWaterLily‍ , having chemo treatments postponed due to low platelet counts is quite common, I would say. It happened 50% of the time during my Dad’s first course of treatment (which is only twice - his course was 4 treatments.) During that course of treatment, Dad ate a LOT of red meat, and, while he gained a few pounds over that run, the additional iron in the meat didn’t affect his bloodwork numbers, so I’m not sure if there’s much you can do to raise the platelet count. You could ask the oncologist, for sure, to see if he or she would have any ideas for you.

The hospital did reduce Dad’s medication level to 80% of the full dose to see if that would help his counts bounce that few days sooner, but, again, I couldn’t say for sure that it made a difference.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Sep 6, 2020 8:27 am

Charlie1‍ , I’m one of those people who believes there is a link between our dental health and our overall health. There are studies that support that buildup of plaque on our teeth, for example, can be an indicator of plaque in our arteries, so that correlation has been scientifically proven.

Having said that, there is no reason for a dentist to berate a patient in that manner. Based on what you wrote, her behaviour appears to have crossed several lines, including those of professionalism and ethics. It might be worthwhile to seek out an opinion from another dentist, and depending on the outcome of that visit, take any appropriate action with the dentist who has already seen your husband. 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How Are All The Caregivers Doing?

Posted by RedWaterLily on Sep 6, 2020 3:06 pm

Thanks Cynthia Mac‍! Even though it's common, it's still worrisome! I wonder how the time delay will affect the treatment plan? It's good idea to talk to the oncologist to see if there's any preventative measures that we can take.  At the meantime, nothing I can do but wait!

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Sep 6, 2020 6:55 pm

RedWaterLily‍ , I meant to address your concern about the delay in my earlier post. Now, admittedly, I’m a caregiver so I don’t really have a full understanding of your husband’s anxiety, but I found from dealing with Dad that I needed to take a step back and remember that while some cancers can develop very quickly (I read somewhere on the site recently that a doctor told a patient with stage 4 cancer that it probably developed within 6 months), others can take years to develop (cervical cancer is an example I’m aware of). 

Once the doctor gives a diagnosis, it’s perfectly natural to want to get it out ASAP!! I counteracted that thought by remembering that it took time to develop, so chances are that it will take time to treat it.

I know it’s worrisome, but if it helps us “wrap our head around it,” we do what we can do.

I still remember the post from the person who said that when they were getting treatment, they imagined the cancer cells screaming as they were being destroyed. That perspective has really stuck with me! Like I said, whatever works!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How Are All The Caregivers Doing?

Posted by RedWaterLily on Sep 7, 2020 1:01 am

Hi Cynthia Mac‍‍ !  Oh! I'm so glad to see your post! It's comforting to see the problem from a different perspective. You're right, it takes time to develop, so it will take time to treat. Thanks for the insight!!!  I specially like the suggestion of the cancer cells screaming! It brought a smile to my face! Thanks so much!!!

They postponed the chemo treatment for one week, but no suggestions on what to do to bring the platelet level up! Now I'm wondering what if the platelet level still low by the time my husband have his next blood work done?

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Sep 7, 2020 7:51 am

So happy I was able to help, RedWaterLily‍ !

When Dad’s treatments were postponed, it was always 7 days out, too. I think they probably have enough science to know that this amount of time gives them an assurance that the platelet count will be high enough for the next treatment, and I found it helpful to know that they were keeping Dad on a “bloodwork Tuesday, chemo Wednesday” regimen. 

I don’t know how to increase platelet count. You can increase red blood cells by eating more red meat and leafy greens, but the only thing I saw on the Mayo Clinic site for platelet counts was transfusions, and your oncologist would probably not recommend that.

Is your husband taking folic acid as part of his treatment plan by any chance? 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How Are All The Caregivers Doing?

Posted by Nightowl on Sep 8, 2020 4:47 pm

Re: platelet count... ALL of my blood counts were so low that I needed a blood transfusion after about 10 weeks of being on chemo.  It did the trick, blood counts rose to near normal, and I felt so much better.  I soldiered on with chemo for another 8 weeks, but again, all of my blood counts deteriorated.  As my oncologist said, I did not tolerate chemo well, and she ended it six weeks (or two full rounds) early.  Not everyone can tolerate a full chemo schedule, and I’m ok with that.    P.S.  I did self-inject Filgrastim to boost my white blood cell count after the first week, but that only helped with one of many counts.  A month after discontinuing chemo all counts were normal.