It was sepsis

preciousmom · December 2016

This time I want to preface my post with an introduction:

Please forgive me for barging into the group. Many years ago, before I had a family of my own, when my dad fough pancreatic cancer for six months, I joined an (early) online, disease-specific discussion board which was a lifeline. I was very engaged not just in sharing but in listening and responding. I'm not sure the (probably?) infrequent sharing / responding I'll be able to do now will help anyone. (I have three kids, ages 7-9, two of whom have special needs.) My father was 52 when he died. But I am desperate for connection. I don't know if caregivers are welcome here, or if it's really for patients. And I know lymphoma is a very different type of cancer than pancreatic.

Now for the substantive reason I am posting, as a follow-up to my post yesterday about unexplained high fever and screaming pain:

My mom had a very serious blood infection that she should have come into the hospital for much sooner than she did. She had not wanted to go to the ER as instructed for high fever because of risk of infection! She insisted on waiting until the clinic reopened after the long holiday weekend. She is an otherwise healthy, fit 70 year old. Over the course of a few days she seemed to age 10-20 years. I don't live with her and I didn't realize how serious it had gotten, or I would have called an ambulance! I think they have gotten it under control now but I am fairly traumatized--- not that this is about me. Also I don't want to spook everyone, but if you are told to go to the ER if your temp is >101, make sure your primary caregiver knows this in case you are out of it at that point. I don't think my mom's companion understood this.

She's been living with lymphoma for over five years now, but this is the second time she's been hospitalized for sepsis. It was early on after her diagnosis the first time. This is her third time getting a course of chemo, but the very most toxic. It's R-CHOP for follicular lymphoma "behaving badly", as if it's transforming. She also has MALT. She is 4 cycles in of 6, then hopefully she will be able to endure a stem cell transplant. I am her health care proxy. Until a few days ago, she had had very limited side effects at all! Her hair fell out, but during her less immunocompromised weeks she continued pilates and yoga. She is stronger than me!

Max Former Hodgkins Stage 3 · December 2016

Absolutely !

Absolutely anyone in the cancer fight is welcome and an appropriate member here. Surviviors, caregivers, one and all. Many of our regulars are like you: The spouse or child of the patient, or some significant other leading the patient's fight.

I always said that my wife, my primary caregiver during my cancers, had a harder time than I did. I mean that: My cancers were harder on her than on me. I believe this to not be uncommon.

As her health care 'proxy,' do all of the legal stuff: power of attorney, so that if she is too weak at times to make decisions, you can do so with no haggeling from the doctors and insurance companies. I am glad her issues were found and resolved,

max

illead · December 2016

Fellow caregiver

As Max said anyone is welcome on this forum. I am the caregiver. My husband Bill is in remission with Mantle Cell Lymphoma. I also monitor a forum just for MCL but it basically only deals with facts. On this forum we talk to each other and get to know one another. It is not quite as lively as it once was, but everyone has a life and we realize that. So you are very welcome here and don't worry about your regularity, we all just do the best we can, but we all know we are here for each other. As a caregiver I feel just as welcome as everyone else. We all wish the best for your mother. Once she gets this little problem over with, she will no doubt be back to her better self, and you will all be able to relax again.

My best to you,

Becky

preciousmom · December 2016

Thanks Becky and Max.

Thanks for being so welcoming. It was so wierd to get asked at the hospital if she lives independently. I wasn't sure what they meant at first and had to realize how awful she looked. But, she is better enough that they are considering discharging her tomorrow. We hope they will refer her to rehab for at least a couple days.

Psjeepster · December 2016

I came here last june. My 74

I came here last june. My 74 yr old Dad was rushed to the hospital. He had just had his first r-chop treatment. We almost lost him. He had a c-diff, septis, kidney and bladder infection. Little immune system to fight it off.

I found myself jumping right in there. I just could not leave my Dad's side. I spent months at his bed side helping him anyway I could.

I knew nothing about cancer and it's treatments. Desperate for direction I found this site. They probably got sick of me posting. I really feel win my heart that the people here helped save my dad's life. They gave me advice and shared their stories with me. This gave me a direction to go in.

Everyone is welcome here. I hope your family's journey to good health is a short one.

lindary · December 2016

posting

I recieved a lot of information from the oncology Drs and nurses but many of them have never been through having cancer. It was my oncologist who recommended getting on a discussion board to talk to others who had been trhough it. When I was first on this site I too was posting almost daily. Looking for answers to my questions and the experiences of others. It helped me to talk to people who had been through treatments for lymphoma or other blood cancers. Like many here say, cancer is harder on the caregivers/family members than it is on the patient. We are dealing with the fear, pain, discomfort, etc that comes with the diagnosis and treatments. Our caregivers & family members can only imagine what we are really going through.

Psjeepster - your dedication to your dad is admirable. I hope reading our stories and comments do help you to empathize with your dad and I hope he realizes how you have tried to learn and understand about his cancer. I wish you & your dad a Happy and better health New Year.

preciousmom · December 2016

Thanks Lindary & psj.

My mom was discharged last night to a rehab center. She is so much better but very scared she won't make it through the SCTP coming up in probably February. Wishing everything strength and peace in the new year.

.

lindary · January 2017

scared

Preciousmom,

I am only a few years younger than your mom. I don't blame her for feeling afraid of the SCT. This time last year I was looking at having SCT in Feb or March of 2016. Mine was going to be at Rush in Chgo. They do a lot of SCT and are prepared for the infections or other things that could cause problems. I had the upmost confidence in them. I still work so I do have something to take my mind off of any worries. At least during the day. But at night, well that is when the worries would take over until I was so tired I would finally go to sleep.

What did I worry about? All I could think of is that the immune system I had been building up over 60+ years was going to be erased and replaced by another one. My immune system has kept my from getting sick when everyone around me at work was sick. When I did get sick it was ususally for a day or two and then gone! I didn't want to lose that. I kept telling myself if that is what was needed to kick my cancer to the side then that is what I would do. I tried to take it one day at a time. Sometimes that worked and sometime I just worried.

Let your mom talk about what scares her about the procedure. See if hse needs more information or just needs someone to listen to her. We have quite a few people here that have been through SCT and they can telll you of their concerns before the procedure and how things reallt went. Keep us updated on her progress.

preciousmom · January 2017

Yes!

oh thank you. I'm going to do just that. I'm so glad to meet you.

It was sepsis

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