The end

24.07.2019 12:45 am

This is it for now. I have more to tell and show you, but I’m so very tired. I’ll reply to all messages asap and address some simmers’ concerns. I’m forever grateful for all support and help I’ve been getting from you all, but it hurts me so much that some of you think custom content created to help me and my mother is behind a paywall. I said it many times: @gruesim is helping me selflessly, she didn’t gain anything from it. I’m begging you for understanding and  patience. The sad truth is that my fundrising will come to an end at some point. Today I need help but our lives are unpredictible and maybe one day you’ll be forced to ask for it.

Love you all!

Photo of IV antibiotic (gentamicin) and IV fluids  I took in hospice. Both bottles have my mom’s last name written on it.

papers from the other hospital (June 27th-29th)

Abnormal murmurs in both lungs. Ultrasound results: liquid (urine) build-up around left kidney. Tumor in the bladder (71x69x63 mm which is almost identical to other results from previous hospital). Liquid in abdominal cavity: 19mm around liver, 16 mm in the lesser pelvis. Liquid in both lungs, 45 mm on the right side.

Replacement of the left nephrostomy tube. Troubles with drainage are mentioned. Second ultrasound shows very similar results to the first one. Below you can see blood work results.

Papers from our local hospital (June 22nd-27th)

I’m sorry for terrible quality. I took those photos when we were waiting for a private ambulance to go to the ER of another hospital and was in hurry.

Ultrasound mentions liquid in both pleural cavities - 25 mm in the left lung, 60 mm in the right lung. Liquid around liver (25 mm). Tumor in the bladder (70x70x60 mm). All meds she was given are mentioned in above papers (including international aka English names). Urine test showed Enterococcus faecalis.

Bloodwork results from the ER of that hospital. It shows very low levels of basically everything including potassium and iron and that’s why she was given suplemets every day. CRP was still very high.

paper from urologist. He mentioned that left nephrostomy tube was ripped out and they don’t have suitable tubes to fix it. He advised us to go to the other hospital.

I'm terribly sorry for my ridiculously long absence. A lot has been happening since my last update. Things aren't any better tbh, everything has been getting worse. Thank you for your patience and overwhelming love and support my mom and I keep getting from you all even though I was dead silent. I appreciate it with my whole heart. This update will be extremely long and may trigger those of you who struggle with mental illness, so you may skip last part of this text post (I'll put trigger warning in right place). Medical papers will be in separate posts. I can't remember exactly when I made my last post, but last visit from our hospice nurse was on June 10th (Monday). On Tuesday (June 11th) I got a call from full time hospice care and was informed there was a free bed in a single room for my mom available immediately and we have to decide now whether we want it or not. I told hospice worker that I need to discuss it with my mom. And I did. My mom and I decided that it's the right time and it's gonna be the best option. I called hospice and told them about our decision. Then I booked an ambulance ride for the next day. My mom has been in the hospice facility since June 12th. She's in a single room because she has those two nasty bacteria - VRE and ESBL+. Our new doc changed her pain management and some of the other meds - she no longer takes morphine tablets (prolonged or short release) but receives it 24/7 in a pump, gets IV metamizole and was receiving 2 tablets of Lyrica (pregabalin; more about it in a sec). Neoparin dose was changed to 2x60 mg a day instead of 3x40 mg. She takes only one diuretic drug atm and gets IV fluids with vitamins etc. No changes in other drugs like bisoprolol. During the first week of her stay she got very serious renal infection - a lot of sludge and blood clots in urine (especially in the left kidney), shivers to the point that I thought she had seizures, high fever spikes and excessive sweats. They started IV gentamicin and ceftazidime and did bloodwork. CRP was around 200 and HGB was around 6,5 aka serious infection mixed with anemia. She was really pale at the time, literally translucent. Doc decided to transfer her immediately to the nearest hospital (the same she was in February where they couldn't change her nephrostomy tube because they didn't have appropriate tubes) so she could get blood transfusion. She successfully got 2 bags of blood and HGB was around 9 which was a good thing. BUT. At some point her left nephrostomy tube was RIPPED OUT. I don't know who did it - I suspect paramedics who transferred her from ambulance stretcher to hospital bed or one of nurses from nephrology ward where she was admitted. Tube started leaking on Saturday night/Sunday early morning (she was transferred to the hospital on Saturday). My mom and I both let docs know that tube was leaking several times. We were waiting for consultation with urology specialist for FIVE DAYS. For five freaking days no one from the urology ward bothered to come and check and attempt to fix it!!! Of course they weren't able to put it back in or replace it, because they didn't have appropriate tubes and our only option there was to puncture the kidney again and we both didn't agree to do it. My mom and I decided to transfer her to our usual hospital where her kidney issues were treated since the beginning. I had to book private ambulance again. We went to the ER on Thursday (June 27th) morning. She was there to Saturday (June 29th). Ultrasound showed urine build-up in the abdominal cavity around left kidney (except usual fluid build-up around the liver [19 mm layer] and in lesser pelvis [16 mm] caused by probably cancer), heavily swollen pelvicalyceal system and no nephrostomy tube in the kidney. There's probably tumor in the bladder (the main one has grown into it) - ultrasound showed it and it's 7x7x6 cm. This is the second time when anything about the bladder situation is mentioned - first time was in February when doc mentioned thickened back wall of bladder. Tube was replaced at night (June 27th/28th) but there was still no urine in a bag for around 12 hours. ER doc tried to flush it with no effect. For next 12 hours around 200 ml of urine eventually drained. She didn't receive any meds (including painkillers) during her stay in the ER, so I had to stay in the waiting room the entire time and sneak in to give her morphine (thank goodness I didn't donate it and decided to keep it) and Neoparine shots. ER doc wanted to give her IV Ketonal (ketoprofen)... Ridiculous. She was transferred back to the hospice on Saturday (June 29th) morning where they started IV gentamicin again, because she was off any antibiotics for 2 days. When we were back in hospice, her saturation was 63 or 68% and she has been on oxygen 24/7 since then. She'll get last dose of antibiotics tomorrow. Dose of 24/7 SC morphine was pumped up in last few days because it wasn't enough. Now about Lyrica - dose was reduced because it was heavily messing with her brain and did more harm than good. When she was on 2 tablets, she was hallucinating, crying in her sleep and sleeping almost all the time. I thought that the end was very very close but when I discussed it with our doc and my mom started getting only one dose in the evening, she came back to normal - sleeps less, doesn't have hallucinations and is much more responsive. On Monday (July 8th) we're going to our usual hospital for scheduled nephrostomy tubes replacement. More medical details like blood work results etc. will be in separate posts with papers included. I don't have any papers from hospice yet - I'm planning to request a copy of my mom's medical records when the end is really very close. For now I have several photos of my mom but I WON'T RELEASE THEM PUBLICLY EVER. If you want to see them, please message me. Please, respect me and my mother who's dying, I'm begging you - remember that you ask for a photo of a terminally ill person. It's the hardest time ever for her and I hope you understand my decisions. I further discussed funeral issues with my mom and already chose funeral company. My mom's wish is to be cremated, but she still didn't decide if she wants any church service. Funeral home says there's 70% chance that my mom can be buried in my grandmother's grave if she's cremated after passing away. Cost of funeral would be around 7-8k PLN including paying for even being allowed to bury next person in the same plot, keeping burial plot for next 20 years, cremation, urn etc. (Not including church service which is 900 PLN as funeral home worker said); funeral allowance in Poland is 4k. I'll show you details in the next few days.TRIGGER WARNING HERE. You can stop reading here if you don't like reading about mental illness and you're not interested what I've been dealing with.Long story short, I'm in a dip shit emotionally and mentally. I've been struggling with mental breakdowns for many, many months but in a last few it was more and more unbearable. I've been suicidal since at least February. I've never mentioned it publicly and avoided to speak about it privately as well. Everyone always says I need to be strong and I kept telling it myself but I can't do it anymore. I'm not strong. I don't want to live anymore. I don't have the strength to live. I didn't end it all yet just because I don't want my mom to deal with my funeral. I don't want to make her troubles. I talked to the psychologist who works in hospice and she booked a psychiatrist appointment for me. I wouldn't be able to do it myself so she did it for me. It was a private appointment. Otherwise I'd have to wait for months. I think I wouldn't be there in a few months.  Psych I had an appointment with used to work in our hospice and is also palliative care specialist and worked with cancer patients. I got meds but I don't have any hope for the future. That's all I wanted to say. Thank you so much for being patient with me. I'm overwhelmed and extremely grateful for your help. I'm nothing without you and I'll never be able to pay you back. You have so much love and care to give, it's amazing. I'll give you more details about my expenses in upcoming updates, I promise. I'll try to be more consistent with letting you know what's going on. It's just extremely hard for me to start every new day. I'm sorry I'm bothering you with my own issues.

Hey sweet nonny, this ask probably was sitting in my inbox for good few days, I'm sorry.

Yes, I reached my goal and it wouldn't happen without great support from the simblr community. I will be saying it forever - I owe you all my mom's life and I won't ever be able to pay y'all back.

My fundraising is still open and will be til the end. I'm going to update its description very soon and I'll increase its goal every month. Thank you again!

Thank you!! It was the best 30th bday I could imagine in this circumstances and tbh it was really good and calm day. 😊

Thank you, Pru for remembering about me! I'm no longer a hot twenty. ;)

I forgot to mention it in my main post. Swab test results came back from lab and my mom is positive for alert pathogens: Enterococcus faecium resistant to vancomycin (VRE) and Escherichia coli (ESBL type).

Referral to next tubes replacement. There's a date in right upper corner - June 7th 2019. Next tubes replacement will be in 4 weeks. 6 weeks is max but not recommended.

Hospice notebook with visits of nurse (May 30th, June 3rd, 6th, and 10th), doc (June 8th; he forgot his signature and stamp but you can compare this writing style to my previous updates + there are prescriptions below with the same date) and PT girl - she never includes dates in her notes but she comes every Tuesday.

Prescriptions - left: Bisocard (bisoprolol), Spironol (spironolactone), Diuver (torasemide), Neoparin (enoxaparin), Atossa (ondamsetron); right: Macmiror Complex 500 (nifuratel + nystatin), Clotrimazol GSK (clotrimazole)

Prescription for Argosulfan cream

Prescriptions for pain meds - left: MST Continus (prolonged release morphine tablets), right: Sevredol (morphine).

I'm back after very long and tiring week. As I mentioned in my last update, I decided to move some furniture and make free space for my bed so my mom and I could live in one room. It took me 3 days to do it, throw old stuff away and clean. My knee, back and lungs definitely didn't like that and I needed some time to recover.

PT girl came last Tuesday and put kinesio tapes on my mom's left leg. They came off completely literally 2 days later.

Nurse visited us on Thursday and today (Monday). Nothing new here - as always all she did was measuring blood pressure and saturation. She didn't even touch that "ulcer" on my mom's left food and just said to put thin layer of Sudocrem on it. More about it later.

On Friday we went to the hospital for scheduled nephrostomy tubes replacement. All appointments were delayed and we had to wait for like 4 hours but thankfully there was one gurney in waiting room so she didn't have to sit. This time nurses and docs were really helpful and understanding, they transferred her from a gurney to an operating table etc. I guess it's normal and expected behavior of medical staff abroad but here it's like wow, they really tried. Now, to the point - this time tubes replacement procedure was really hard and and took very long time. Doc couldn't put a new tube in left kidney, he tried over and over and it just wouldn't go in, so he did an ultrasound and it came out that there was a shitton of sludge in both kidneys and it blocked tubes from going smoothly in. Mom told me she heard gritty sound when doc attempted to insert a tube. Eventually doc was successful and new tube was in place. We were told that old tubes were fully covered in gritty sludge and almost completely blocked. I noticed there was less and less urine in bags in last 2 or 3 weeks, I think I even mentioned it here. Anyway, doc said my mom should have her tubes replaced every 4 weeks now to avoid blockage. Doc was in much hurry and didn't have time to give us papers, but I have a referral for next tubes replacement to show you. There's a date on it when it was written.

THIS PART IS VERY TMI, SO YOU CAN SKIP IF YOU WANT.

On Saturday our hospice doc visited us. We talked about flushing bladder and vagina and I openly said that IMO it's too risky at this point and I can't agree for this procedure to be done at home where there's no access for an ultrasound, nothing is sterile etc. Vaginal discharge is very nasty tho, smells awfully and is heavily mixed with blood. Labia majora are swollen (we can't be sure why - it may be caused by infection in that area or by lymphedema), labia minora are inflamed and red, same with anus. Small amounts of liquidish stool is coming out involuntarily 24/7. There's nothing that can be done with the stool problem atm, because tissues and nerves of rectum are heavily damaged by growing tumor pressing on it (it may also be a late side effect of RTH) and taking anti diarrhea meds may lead to very heavy constipation. Doc told me to smear aqueous solution of silver nitrate around labia and anus (without internal flushing), use Argosulfan cream here and there, use vaginal globules - Macmiror Complex 500 (nifuratel + nystatin) in the morning and Clotrimazol GSK (clotrimazole) in the evening. I was told to not use diapers and underwear if possible. Tbh my mom stopped using pads and wearing underwear some time ago and now we just use Seni bed underpads. I clean my mom very often, at least 3 times a day to keep her fresh and avoid any further inflammation and skin irritation. This is raw reality of taking care of bedridden person. In the past I wondered how caregivers can clean someone else's private areas without any disgust. Now I understand and to be very honest I'm not disgusted at all. You gotta do what you gotta do.

END OF TMI PART.

No changes in my mom's leg. Doc said it'll probably stay that way, because my mom's ability to move is worsening every day. PT (exercises) isn't an option rn because of thrombosis. She's not even allowed to wear stockings used to decrease swelling... Doc said there's no sense in continuing kinesio-taping...

That ulcer on her foot isn't pressure sore in doc's opinion. It looks like typical blister full of transparent fluid. It doesn't seem infected and isn't painful. We were told to let it be for now and if it breaks, I'm supposed to use Octenisept on it and some light dressing.

Other pressure sores are ok, they're still there but they continue to heal.

Mom has nausea from time to time, doc prescribed Atossa (ondansetron, known worldwide as Zofran).

Pain management didn't change since last doc's visit.

Yesterday we talked about dying process, hospice and funeral. I'll have to pay for a new burial plot, because it won't be possible to bury my mom in the same grave where her mother (my grandmother) is resting. It's not registered as "family grave" and cement wasn't used to strengthen pit's walls. Basically it's kind of "one use only" grave. My mom wants to be buried in the same cemetery where her mother is. It's the communal cemetery, here's its website http://www.cmentarzekomunalne.com.pl/cmentarz-polnocny/cmentarz-polnocny-informacje/ She isn't sure yet if she wants a mass or anointing of the sick. I will inform you when and where funeral will be, as my mom said everyone who helped us is free to come if you're able and willing to.

Now I want to rant a bit about our neighbor. I have to let it out or I'll explode. On Friday when we were leaving to the hospital and paramedics were transferring my mom on a gurney from our apartment to the ambulance, I met our neighbor. When that b... saw my mom she said to me "hey, she (my mom) completely dried out!". She said it THREE TIMES. How much audacity does one have to have to say something like this?? I thought I was gonna punch her but I only wished her to not "dry out" like this herself. Unfortunately my mom heard it and asked me to put T-shirts on her instead of tank tops, because she doesn't want anyone to see her thin arms. Why do people consciously and willingly hurt terminally ill patients and openly compare them to mummies. That neighbor didn't gain anything from it and my mom felt awful after all. :(

That's all for today. Thank you for your support!

Promised picture of "hospice notebook". More tomorrow - it's 1:40 am now and I'm gonna head to bed and get some sleep.

Today I noticed weird wound/ulcer on my mom's left foot. It doesn't look like pressure sore tho. Nurse will visit us tomorrow, so I'll ask her what to do with it.