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HoldingOn

Hello everyone, why now with housing issues on top of all the rest?  The LAST thing anyone needs when you’re dealing with pain and looking at an unknown future. 

This cancer is unpredictable, isn’t it?  A month or so ago I went to Ermerg at my oncologist’s suggestion after I spent a week of being dizzy and nauseous, vomiting sporadically and generally feeling tired and weak. She thought I might be having a stroke. This was confirmed with a CT in Emerg, along with an internal infection at the site of a recent hernia repair. So a week of iv and oral antibiotics, drugs to prevent more thrombosis. Then - icing on the cake - C-diff from all the antibiotics. When I started to realize that one side of my face was slack, back to another Emergency Room. Luckily a few days before I had a brain MRI and based on that the doc in Emerg told me that I had never had a stroke. The cancer has metastasized into my brain stem and has affected inner ear and facial nerves. I don’t know which is worse. So in hospital now, the Cancer Agency is organizing radiation treatments to try to shrink the tumour, and after procrastinating about finalizing my will (yes, irrational, but denial is a strong self-defense), had my lawyer come yesterday and that is now done and dusted. 

My hope is to be discharged home but living alone might be a challenge too big to overcome. Hospice is the alternative and I dread that. It feels like it would be complete surrender. 

GloHo

@HoldingOn So sorry to hear of all the things that you are dealing with right now. Do you know if there are palliative care services near you that would be able to treat you at home? In my area, I would check with VON (Victoria Order of Nurses) - I know they do have palliative care services, but I do not know how extensive the care is, i.e., how often or how long a nurse would be with you in your home. You may want to speak to the Dr's at the hospital to discuss different options available to you. In Ontario, we have Hospice Palliative Care Ontario (https://www.hpco.ca/) that I would probably call to inquire about the type of services that would be best for me and what is available in my area of the province. If you are not in Ontario, go to the Canadian Hospice Palliative Care Association (https://www.chpca.ca/) to find a local provincial organization near you. I arrived at this via quick internet research to try to help you with your next steps. Hope this helps. Sending hugs!

Strongwoman

@HoldingOn  How are you doing, really? It is tough to digest what you found out and must be quite difficult. I concur with @GloHo and suggest you speak to a nurse or someone on your team about what is available to you and living alone. Perhaps one of those Life Line type of companies may be worth looking into too and discussing. There should be some services for care in your area, it is a matter of finding out what. Perhaps the hospital has a social worker on staff that may know. 
  Yes, the finalizing of the will etc is very difficult to face and do.  I am at peace knowing we collectively updated it and it is what we both want. Hard conversations but necessary regardless.  As soon as I am able to I will complete paperwork for the "other" stuff I don't like thinking about all the time.  
  And yes, housing issues is not good. On a bright side, my paralegal suggested calling the Landlord Tenet Board and it says right away that processing times for applications are taking 7-8 months currently. That is good for me as it means it will mean longer time where we are and not as much worry. Still stressful and I do my best not to think of it.
  I am hurrying my butt along in completing some of my Legacy work as well. I put myself on a timeline and by the end of August I want most of it done.  I think it reasonable.  
  Hoping you get out soon, can go home to your own bed and carry on with things you want to do or finish. That is what I wish for you.

HoldingOn

@aGloHo and @Strongwoman:  thank you both for your support and suggestions!  The doctor is now putting in a referral to the Palliative Medicine Services in the hospital and both OT and Physio will be doing assessments to plan for discharge home (Hurray!) Your advice was exactly what I needed and is so appreciated. Now I have something positive to work towards and I have hope, that little candle in the dark. 

@Strongwoman, thank goodness for delays at the LTB: may they continue. Although this will be a huge concern to manage while you’re so unwell, I truly hope your landlord will just decide to put his plans aside or even better, change his mind entirely. You and your family need this anchor in the turbulence. 

@GloHo: may they find something in the biomarker/genetic testing that will lead you to good health. So much research in that area of late, thank goodness! Thank you for participating in the study, so many will benefit. You deserve to be one them. 

My little candle and I are going to rest now. 

With hope and warm hugs to you both

babs272

 
No ;Live chat today for June 29th?

Strongwoman

@babs272
  My apologies. I had an acute episode Sunday night that resulted in my team nurses to come to the house and insert subcutaneous ports for meds. It's was the worst experience of symptoms I have had to date. I am thankful for all the help and that I made it through. I am as a result much more fatigued than normal and had the ports removed last night. I attempted to do 3 errands and wound up at home in bed exhausted. I have only woke up now.
 To all out there since the chat was missed today...
If you want to chat about anything, I will be up and watch the thread for anyone who wants to join in.
 How has your week been? Any updates? Anything you want to share?
@babs272 since you jumped on today...what's up?

Bojenka

@Strongwoman I am sorry to hear about your acute pain episode which is exhausting.  But glad you are feeling better now.
I was having severe pain episodes in February through April. The palliative doctor put me on Hydromorphe for long term and breakthrough as well.  I had very hard time with constipation. You mentioned Buscopan and Dilaudid. Do you find those effective?

Strongwoman

@Bojenka
 Thank you and sorry to hear of your troubles. I have been on long acting Hydromorph (dilaudid) since last year and have breakthrough as well. I have a SRK at home for when I run into acute trouble like I had on Sunday. The palliative doctor set this all up for me. 
For me using Restoralax daily helps with the constipation. It pulls the water back into the colon via osmosis and has no taste. You can add it to Luke warm water, juice or applesauce.
Senokot is used to push the material through the colon. For me (and sounds like possibly you) I can't use it due to the partial blockages I continue to have. It creates too much motility and thereby creates more pressure because it can't get through. This increases my pain and comfort level.
An SRK is a Symptom Response Kit and has drugs in it to help you at home and keep you from going to hospital unless absolutely necessary. Sunday I was close to going. This was ordered by my palliative doctor and team. If you don't have one, ask about it your next appt with your Oncologist.
 I keep my kit in a cardboard box in house because it is narcotic mainly and they (nursing staff) monitor what gets used and what doesn't. This is for obvious reasons. By keeping it in the box no one knows what it is and only the people that need to know what it is know where it is and what it is for.
  This is a bumpy road and by the way I am feeling now I have a sneaky suspicion I am not bouncing back as normal from this and will have to adjust to whatever my new norm is going to be. If I can get out now and then and interact with family and friends, I am happy.
  Hope some of this helps you

babs272

 Seem to be handling the doxil and avastin just fine.just back from avastin today.I think I finished #4 and start #5. In 2 weeks. I requested to talk to another onc. My onc. And I are not clicking for some time.

Strongwoman

Oh @babs272 I am sorry to hear that. On the other hand, good for you for being your own advocate and asking for what you need. Be proud of yourself foe doing so!
Remind me how many treatments you receive with Doxil/Avastin? Are you almost done?
 You sound like you are doing okay emotionally. Is that a true statement or something else?  
Seeing those grandkids anytime soon?

babs272

grandkids grandkids should be here soon. Tomorrow we are all going to the park and do some hiking n the trails.  I just finished #4 treatment. Not sure how many more yet. I want a second opinion

Strongwoman

Nice!
We are doing a family trip to Collingwood for the day.  I am excited.
Enjoy your day with the grandkids! Sounds like fun.

Eileen

Well i thought id drop a line to say i just myself got out of the hospital again. Was in their on the 1o or 20 and got out after they did my gastric scope only to go back in within a day and half. Back to severe stomach pain fever kept going up to 38.5 then down. I called my oncologist only for her to say get your butt back to the hospital.
So went last thurs night. I was lightheaded, dizzy, started having trouble walking. Felt like i was going to pass out every time i got up. Nauseated. So on meds in case it was sepsis they didnt want to wait for culture. Fine so 2 days later they took me off suspected just maybe chemo related. Then i had my ct and kidney test while their. Had numerous blood test. Ohoh now they come and say i need blood transfusion my hemoglobin down to 70. Ok. Go through 2 units. It has come back up they did ultrasound of my liver because they were concerned my liver enzymes were high. Just my ggt and alkaline phosphate ...ok that ok. So they backed off my fluid iv to 50ml an hr because i was drinking. But then bout of diarrea hit for 4 days so back down to 34 my egfr and 152 my creatine. Ok well drink more fluids. Ok now my feet are swelling. Cannot win for losing
 But everything looks ok. Do i feel up to going home. Well if everything is good i can. My daughter said i can stay with her for a few days get my strength back. So ok i am at home now ill go to my daughters tomorrow. I was either in a hallway or in an alcove in the hospital being switched from this floor to that floor except when i had to do blood transfusion they put me in an actual room to monitor me for that.  So now dr gives me a list of what to watch out for in case my kidney function should decline even more. On top my magnesium is down a bit, probably from my pantoprazole im on. So ill have to take for that. But at home now yes a bit more fatigued than my normal.
So thats my weekly update. Had me on a bit of sleeping pills while in their. That of course adds to the grogginess.

Strongwoman

@Eileen
 Wow! You have had quite the time, haven't you? Hallway medicine at its finest too by the sounds of your stay.
 How are YOU? How are you coping/managing with everything? How do you feel about going to your daughter's? 
  Remind me again if they have given you an updated prognosis as of late?
  All I can say is, rest my friend, gather whatever strength comes back. Consider obtaining a Lifeline or something like that or discuss with family/medical team. 
All this is so difficult isn't it?
 I read this tonight in a book entitled "Final Stages"
"Coping with a terminal illness is more than hard work--it's all consuming and creeps into every corner of your life."
"It's like having an unwanted and uninvited stranger in your midst, who seems to take up more and more space."

No truer words have been spoken eh?

Eileen

@Strongwoman. My cancer is stable from what i read in a ct they did a week prior to this one my lrg tumor was 0.8cm i believe. I think all this is just from my kidney function and my gadtric issue. My biopsy from the gastric scope hasnt come bavk yet. But yes the more chemo u have the lower your blood levels drop and take longer to go up. The hospital dr and my oncologist concerd that a blood transfusion was best. They could put me on iron pills but it would take like 3 to 6 months and she wanted me to do chemo next week. Im ok i actually was the one who reached out to my daughter to let her know im not feeling strong enough and asked if i could spend a few days with her. She naturally said yes. But i am going to look into doing pallitive care as well because i think its time that i get the extra help. When i went back into the hospital their a day and half later 2 of my kids were like mom just the chemo. I really felt like that they now are startong to think oh mom getting hypochondriac. Like the boy that called wolf. I needed someone to take me to the hospital. Oh 2 of my kids were 2 busy. Like really!!! ButMy oldest daughter spoke up because lives like half hr awzy. She like mom ill pay for a taxi for u. I guess i feel like 2 of my kids are like oh hum here we go again. It made me very upset. Like i wanted to shake them and say hey wake up im not going to get better. Im stable but it wont last for long. I not giving up hope of course not!!! Im still fighting this as long as i can but 2 of my kids made me feel very alone. Thats a hard pill to swallow. I am sure they didnt mean for me to feel that way but never the less. At times i do feel very alone. But i restarted back with my councilling sessons to help. And this arbitration thing dont help make matters any easier. Like if they rule in my landlords favor we the world am i gonna live i have the cheapest place out their. My son goes oh maybe u need a group home. Like wtf im not their yet like come on here. My application for low income housing i put in last yr still a long wait they know about my eviction 2 month notice. Ive checked in a few places to see if they can help one is called now canada but of course im not mentally challenged nor a recovering drug or acoholic user. So their goes that one. Another place i checked into oh they cannot offer help im not 65 yrs old. So i am hitting brick wall after brick wall. So yeah im fustrated angry. I just scream and say its not fare!!!! Why mee...... So yes going to my daughter and spending time with her and my grandaughter will help me

Strongwoman

Quick correction book is entitled "Final Gifts"
@Eileen I will respond to your last post tomorrow.

HoldingOn

This is a bummer, so for those of you who don’t want any more of that in your life right now  (I know - who does?) please stop reading and move on.
@Strongwoman: How am I doing really? I’m going between terrified and resigned right now. Trying to adjust to the dizzy spinning, balance problems when I stand or walk, problem focusing with the affected eye, and one scary face looking back at me in the mirror.  My days of driving are over. Even with support, can I manage once I’m home from hospital? 

I don’t know what to expect with radiation treatments and I don’t know if the radiation will reduce the current symptoms, slow the growth or just not work at all. If anyone has gone through something similar and you feel like sharing, I’d be grateful to hear from you. 

Has anybody here who’s still reading this explored MAiDs options?  What are your thoughts and feelings about it?  Are there any people who’d like to make it a topic of discussion?
Since 2018 when I was first diagnosed with OC, it’s been a long slow coming to terms and it’s still a struggle.  The elephant in the room for many of us. We see it but acknowledging it to others is often forbidden territory. I sense that some of you have found a small balance: not surrender and not denial. Is this also something others are open to discussing?

babs272

Try to stay positive and strong, right to the end. The end might be the new beginning. WE can get down so low, and then a miracle happenes, and we are right back up there where we feel fine again.
I am going to keep thinking this and hope for that miracle of a outcome.

Strongwoman

@HoldingOn
  You are doing amazing and your resiliency shines through in your post. 
  I, for one, welcome all discussions. The topic you brought up is real for all of us whether we are in denial (or remain there) or bring it out into the open for discussion. If you search under my name and look at my discussion topics, I have voiced many views/feelings on the subject. If you have time, find the one with the url for "Being Mortal".  It is a video so you can simply listen and is a small part from the book written on the same subject. It is the first book I would recommend to anyone. The one I am currently reading is entitled "Final Gifts" and is written by 2 palliative nurses. It talks about many things.  I will post more quotes from it that I found resonated with me being a palliative patient. I am about a third of the way through it.
 As far as radiation is concerned, here is what I know from others talking about it. The fatigue and other symptoms usually start at the 2 week mark and can last a few weeks. So be prepared for greater exhaustion than what you may be experiencing. Ask for help with meals, frequent check ins etc  That would be my advice.
  As far as MAID versus palliative sedation....currently I am choosing the latter BUT if I have the pain, vomiting etc that I just went through or symptoms similar that they don't feel they can manage well, I will change my decision. You do not have to (in Ontario) decide right away and can change your decisions (if of sound mind) at any time. It is my understanding that as long as uour doctor/nurses know what choices you are considering they will fulfill them if you can't voice them. Have the discussion with your team, don't be afraid of it, empower yourself and control what last pieces you can. Sometimes it's all we have. I continually revisit my plan with my team as my prognosis changes.
  We can all float in and out of different stages and can be in a couple of them at the same time (ie/ denial, anger,etc). It is normal and your own experience is unique to you. Am I scared? Some days yes and other days no. I am frantically embracing the good days and getting through the Legacy work I am doing along the way. It can produce enlightenment, tears of joy, tears of sadness, anger but it is all okay because I am doing what I want and driving the only bus I have left.
  Hope this helps you some. You may also private message/email me if you want to discuss further and not in an open forum. I am open and will do whatever you need.
I will be waiting and walking beside you every step I can and that you will allow.

Bojenka

@Strongwoman
I understand what you mean about being able to get out and interact with others as being a good state, quality of life.  
And I am also interested in MAID down the road but will set it up with the palliative doctor in place for when needed.  Thanks for sharing that there is a difference with palliative sedation.  Will look into it because I feel knowledge is my power and gives me sense of peace that things will be in place for smooth transition.  

For me I use Restoralax when I am constipated only because I have days when my bowels are fine or the other extreme of diarrhea. At present I am back in treatment had my 3rd infusion of carbo/taxol and will have a CT scan coming Wednesday to see if the chemo is working.  So far the extreme pain subsided and I am not taking hydromorphe.

On happy note my mother in law is here visiting us for 5 weeks so we are getting spoiled with wonderful home cooked meals.  Work in the garden accelerated also. She has great energy and strength.  

Wish you Happy pain free Canada day
Bojenka 

babs272

HAPPY CANADA DAY!

Strongwoman

GOOD LATE MORNING LADIES!!!
   I am writing early to let you know I won't be on at 1pm today BUT for anyone who wants to chat after 2pm -2:30pm, I will check to see what is going on and will participate then.  I know our @babs272 was the only one on last week, sadly.  
  So, hope everyone is doing ok and if not, well that is ok too. We can't be right as rain every day!  So, go ahead, participate when you can. I will keep it open on my end like I did last week for those that can't attend at 1pm or if there just isn't anyone really on at that time. 
  Stay cool and I will check in with you all a bit later.  Off to have lunch with a friend before she has her baby next week (1st one) and her in-laws come in from Argentina tomorrow.  Stay cool everyone!!!

babs272

I hope to be on after 2 today. I have onc appt this morning and have 2 grandkids to pick up after summer school . 
I am doing ok these days. Some of my tumours have shrunk but I don't know much yet on it all. Going for a biopsy and scan on my thyroid next Thursday before Chemo. Maybe soon I will have more answers.
Have a great day everyone!

Fearless_Moderator

Welcome everyone and for those who dialed in last week my apologies. It was a Senior’s moment thinking Thursday was Wednesday so thought out call was the next day. My only challenge today is that my laptop is offline. My son will fix as soon as he gets back from town. On the meantime I’m on my iPhone ..,,tge one that requires you have teenie little fairy fingers to type on the key board. 

So whomever wants to chat today welcome. Say hello and let us know what’s on your mind. 

GloHo

Hi. Just wanted to check in to see how everyone is doing.

I completed Cycle 3 last week - well, sort of - got another 4 out of 5 days of treatment. My neutrophils are now the culprit for my cancelled Day 5 treatments (not my liver enzymes - although they do increase, just not to a point where treatment would have to be stopped). 

I am going for my CT scan this afternoon. It will be interesting to see what the results are after 3 (partial) cycles of immunotherapy. A little anxious but overall ok. 

Fearless_Moderator

@GloHo so sorry to hear your treatments continue to be cut short. I feel just the same and now I get cancelled or delayed for different reasons. Sometimes neutraphils. Other times my kidneys or my heart. But you’re taking it like the trooper you continue to be. Let’s keep our fingers crossed your latest results are positive. I have noticed that for me there has been very little or any negative impacts from the cancellations. 

GloHo

@Fearless_Moderator
This is my first scan since I started the trial...so I have no idea whether or not it's working at all. I am hoping that it is having some effect, of course, and am trying to stay positive. But, as is my nature, I am back into the clinical trial databases - just in case!! 😀

Strongwoman

@GloHo I hope your CT scan goes well this afternoon and that you see the results you are hoping for.  Look at you go, hopping right into the data base and seeing what may be viable for you.  That is amazing.
Keep us posted when you are ready to share.
@Fearless_Moderator Computer issues are complicated at times eh?  Great when they work and not so great when they don't.  Sorry to hear you have had some issues with neutrophils etc which delays treatment for you.  I imagine you may be past the stage of frustration and more into resignation.  It is still tough though.  
We are now getting rain here and for the ground and the air quality I am very thankful for that.  My friend is so nervous about her C-section on Monday and meeting their little girl as well.  It is an exciting time for them and brings back a lot of memories for me.  Not the c-section part just pregnancy/delivery. Seems so long ago now but not in some ways. 

babs272

Just about ready to pick up Grandkids soon. My talk with Onc was good today. My tumour markers are down and all is looking good. The chemo is working. I am so releived to hear this from the Onc.CT scan I had done on Fathers Day and she will get the results from other dr that ordered it. She wanted a CT scan done in 3 weeks, and I told her I had one done by urologists. So why go again so soon.
Anyway the chemo is working!!!! Yehhhhhh!

Fearless_Moderator

A big Snoopy dance for you, @babs272 Aren’t those waves of relief so wonderful to experience. Keep up yhr the great work gal. And we’ll keep up the celebrations for you.