Still kicking it after 190 days in captivity

Sorry it’s been so long, I have neglected my blog . I have been overwhelmed with issues and just had no energy left . Several of you have reached out to me so thought I would give it an update .

BEWARE EXPLICIT DETAILS BELOW 

So cancer really does suck big time . The diagnosis phase is really hard but once I had a plan it did appear that it would be manageable .

However when you get what feels like every complication known to medicine things get really hard .

If I were to do a head to toe report this would be mine…

• Losing hair (even though they said I wouldn’t), seems to be related to malnutrition rather than chemo 
• Bleeding gums
• Yeast under breasts from sweating in the hospital gown which is made of non breathing cotton ,sort of like an ironing board cover. Who the hell makes these??
• Urinary track infection, never had one before, not nice 
• Abdominal cramps with either Loose diarrhea or blood 
• C Diff a not very nice bowel infection which means antibiotics for 4 weeks 
• Continuous nausea 
• Sore knee from Physio ,they had me doing squats which I last did in grade 9 PE for the love of God ! 
• Toe nail fell off also most likely malnutrition
• Anemia , I have had 19 bags of iron and 17 blood transfusions ( thank you donors ) 
• Peripheral neuropathy, which means my feet are numb and  tingly up to my knees and my fingers and hands are the same.  This is from the chemo.  
•  Blurred vision also from the chemo 

Oh yeah and my parting gift after 100 days in acute care was I am now MRSA positive meaning all my visitors have to gown glove and mask to see me 

That is about it for the stuff you can see. The stuff you can’t see is even worse I think . I have endless hours to think about what everyone else is doing while I am doing nothing . Emily … God love her says my body is fighting and that’s what I am doing .

 I find myself counting odd things which is an old habit from childhood when things were sometimes tough. I know exactly how many teeth I have, 25 . There are 9 cut outs in my rooms ceiling for venting, etc. 13 of those glass dome things on the power pole out my window. 5 posters on my wall reminding people to ID me, get dressed, wear a mask, register at nursing desk , not to dump thick stuff in sink . My white board is divided into 12 sections . My curtain is held by a chain with 182 small silver balls . Are you bored yet – I could go on  ?????

Then there are the noises . When I was in acute care I was always in a shared room mainly with older folks with different degrees of dementia (the cruelest disease of all ) . I felt as a nurse I also had to care for them. I would ring my call bell when they needed care because they didn’t know how to work it. Sometimes they needed to be changed , or calling out , crying, wanting to go home , peeing in sink etc . It was exhausting and so noisy . 

I didn’t realize how sleep deprived I was until I came to Leduc and got a private room. Now I hear the heating and air conditioning noises, the IV pump, the clock ticking and the worst of all the computer and its fan sound like an airplane taking off. At night we add in the staff calling out to each other or laughing and talking right outside your door .

This next part may be hard for some of you and I apologize but I wanted this to be an honest blog not a pretty one .

And lastly the worst demon is depression . It is very insidious and sneaks up on you just when you think you are doing ok. I started on an antidepressant when I was first diagnosed last Feb (yes it’s been a year) to help me sleep . In Nov the Dr at UAH suggested I add another as he felt things were going to get tougher for me so I agreed as I was certainly feeling low. Well, not all antidepressants work for everyone and this one  did not work for me. About 3 or 4 weeks ago I felt myself beginning to slip away . All I wanted to do was sleep . The only person I wanted to interact with was my Dad ( who had passed away Aug 2021) and whom I had been seeing in dreams while on chemo . He was uncooperative wouldn’t show me his face, had a sign on my window to ‘heaven‘ – Keep Out! And his signature A Young .

I was feeling pretty desperate . My hemoglobin was in the 70’s (it was in the 90’s all through chemo) and I had no energy . I wanted to die . The only meds I had access to were my secret stash of Tylenol which Ken (God love him) weaselled away from me and melatonin. I googled Melatonin and suicide but turns out you cannot die from a melatonin overdose . I felt trapped and I felt angry and betrayed by my Drs. You get a new Dr every week and at this point I was on number 28 or 29 I think . She was nice ,smart and professional. I asked her for blood . I told her my threshold for transfusions was in the 80’s and it was in the 70’s and I was exhausted ,no energy for Physio and even trying to eat  or drink . She said the blood bank prefers 70 as the transfusion number due to supply and demand . I assured her my family and friends had been donating more than I received . Then I told her that the patient should be the most important person on the care team especially with a new Dr every week and that I was feeling ignored and disrespected . I told her about my google search . I said you have a patient who is telling you they are suicidal now it’s your obligation to do something about that . So she changed my antidepressant and gave me a blood transfusion and I started to feel better. It is so exhausting to have to be your own advocate all the time and I am not sure but maybe even harder if you are in the medical profession. 

So my current standing is that I am in the Leduc hospital on one of the acute care units . I was on the rehab unit when I arrived here Dec 15 but within a few days was transferred as I was too sick .

I am waiting for surgery which should be in 4-6 weeks . I am being tube fed as I was not able to eat . Nothing tasted good ,everything tastes like the package it came in. I am on round the clock anti nausea meds . I am trying to get exercise every day . Yesterday I walked with a walker to the elevator and back 4 times – A banner day ! Ken visits daily , he really is taking the “in sickness and in health “ thing very seriously ! I have heard and had visits from lots of folks , you know who you are and I thank you all so much . You make it bearable . 

Brooklynn (my 12 year old Granddaughter ) has begged me to come home in 2023 she waited all 2022 and cannot wait till 2024 so I am doing my best to grant her wish .

Thanks again for all your love, support and prayers . It has not gone unnoticed .

Susan 

PS just heard my surgery date is April 3 so perhaps the end of this journey is in site