Escape! I’m out of hospital. I burst into tears on leaving. Overwhelmed with a sense of freedom and loss. Loss of four weeks of my life and being in the world. Last night was my first night at home since June 27th. Twenty-six nights in one small poorly ventilated over heated room. Up until this experience I had never been in hospital for more than a few nights. Let’s hope I don’t end up back there which is common after a Stem Cell Transplant (SCT). Most people get an infection of some kind and have to go back in for a while. Afterall the immune system is still fairly non-existent. Though I think I’ve done my fair share of infection. E.Coli gripped me for at least two weeks of my four week stay. Not any old E.Coli either.
Specialist Nurse J came in yesterday. She asked me, do you know how sick you were? I said not really; I slept a lot and comparing my bad patch to awful gastro-enteritis which I have had a few times, in some ways it hadn’t seemed so bad. She set me straight, kindly.
She explained she had looked in on me a number of times but I had been asleep. This was a good thing because while most people have infection markers of 10 or below and doctors start getting worried and applying antibiotics, getting xrays, pet scans when infection markers are around 100, my infection marker registered over 400. My temp consistently spiked into 39s.
Nice. Once again I don’t do anything by halves. Trust me. I’m into full body experiences. Though thankfully I slept through a lot of this one! Instead of the Dr B predicted two week stay in hospital I was there 26 days and believe me once you feel well, hospital is not the place you want to be or at least definitely not cooped up in one room and one ward without being able to see the world.
Similar to e.coli
Two windows gave me moments of solace and a wee bit of interim escape. I could just see people playing basketball and tennis in Ruskin park through the tree canopy. Though the windows were in the sluice room which while spotless wasn’t a place I wanted to hang around much. Being reminded I may need to use a commode and other goodies at some stage in my hospital visit; if not now then next time wasn’t an image I needed in my mind. Being in there was handy one day; I grabbed a sick bowl for a moment of queasiness. Everything I needed right there, in the moment. Can’t ask for more than that.
The other HUGE thing that provided relief during this ordeal was all the fantastic facebook, insta, video, whatsapp messages I received. THANK YOU THANK YOU. Also for those I did manage to call for a few moments – thank you for being there, again and again. You are so so special, all of you.
The heavy duty chemo and return of my stem cells has appeared to go well and my neutrophils (basis of immune system) are on the rise. I did get mucositis (raw exposed soreness feeling in throat, mouth and oesophagus) which is common and I didn’t get it badly which I am thrilled about. My platelets are still a little low but heading in the right direction. Once I have hit the SCT + 100 day marker (October) I am due to have a bone marrow biopsy which is the deep breath moment. Will my bone marrow show any signs of Myeloma? Will it show a really low sign e.g. maybe a para protein (pp) of 1, similar or undetectable in my marrow? After all the cells that went back in were collected when my pp was 1. Or will it be higher? Will it come down? Questions, questions, patience needed. In the meantime I’m enjoying being home!
PICC Lines and Clots
PICC lines are good things and you can be unlucky with them. I’m a full not by halves person remember so with my first PICC line a clot arrived and ran up my arm above the PICC line towards my clavicle. If you saw the images on insta, you probably noticed my right arm and hand went an awful purple and swelled to about three times its size. After a week (I think I was a bit out of it) they took my PICC line out (nasty little buggers – they have a fish hook style on their ends so they grip once in (a good thing, nasty when they have to come out). At least the line itself comes out fairly quickly, easily, and reasonably pain free. Another PICC line was put into my left arm and normal intravenous meds resumed. The sub cutaneous line in my right leg (for the Haldol) was moved to my left arm also which made sleeping on my right side a whole lot easier.
With daily clexane (enoxaparin) injections again, the clot eased after a week and I recognised my hand, thank goodness. I was worried. One nurse /doctor (can’t remember now) had said clots can take three months to resolve. I’m still on the clexane but there are few visible signs of the clot now which is reassuring. Just bruises and quite a few of them. Hey, that’s completely manageable so I’m grateful.
A day in the life while in hospital
11pm – finally finish all the intravenous and sub cutaneous meds for the day. With two exceptions 1) haloperidol and something else in a slow driver which continues to provide anti-sickness properties through the night, and 2) TPN – essentially food and minerals delivered over 24 and 48 hour periods into my PICC line (because I wasn’t eating enough especially through the e.coli business. I couldn’t stomach the fortijuice and shakes that were on offer (pun intended!)
2am observations done – blood pressure, oxygenation level and temperature
Between 5am and 6am – more observations and then the intravenous drug regime and oral meds process began. Some meds couldn’t be dripped in at the same time so I would end up doing one hour of something then a flush of saline (or similar) for 10-15 minutes then 30 minutes of something else and then a flush and then two meds at once for an hour (all while the other two described above kept going in!
This would continue for the rest of the day; obs and meds pretty much until 11pm and the cycle would start again. Sleep at night was fleeting.
I showered on good days and confess to going four days without a proper wash! I can’t even imagine it, yick! When you are sick you are sick! I lived in Hubby’s boxer shorts and a singlet. I didn’t care who saw me pacing the ward (on good days) in these. Staff have seen worse and the get up was the coolest and most comfortable thing to wear. Hubby was an angel – delivering freshly laundered clothing, drinks, whims (shortbread) whenever I asked and that meant most days.
Each time I was woken up I’d need to drink, slowly make my way to the loo with Harry; my Med stand with four pump boxes on it to manage each drug and boy could he bleep. Then back again for the next wriggle up the bed in to a semi comfortable spot and before letting a very patient nurse begin the next hook up! Harry’s bleep would be every time an infusion was 5 minutes from finishing, then once finished, then whenever one of the pumps got it into its techie bits that there was a downstream occlusion i.e. there wasn’t but I may have moved my hand a fraction so it decided bleeping until it was checked was a cautious thing to do. In the end I got sick of buzzing for Nurses who had better things to do and would turn the bleeps off myself and restart the infusions when I was sure a pump was being over sensitive. Anything to stop the bloody beep!
Harry’s mate keeping an eye on me.
Hospital food is beige. I get they try and have a lot of people to accommodate. If you have no appetite and are trying to force yourself to eat; the menu is not a pleasant thing. I did however live on tuna and mayonnaise sandwiches when I was up to it and the kitchen staff were lovely.
Funnies and daft things people say to you
On my second to last day I took Harry to the loo as usual only to realise I wasn’t hooked up to him anymore. That was one image I could have saved him from!
You’ll be out before you know it (when I’d already been in 3.5 weeks). Actually I will know it. I’m willing it. Now I’m begging for it.
Oh I’m sorry. It will grow back quickly (referring to my hair and shaved head). Why are you sorry? I’m not sorry. I’m cool with it. I have more things to worry about than my hair!
Do you have kids? No??? It’s not too late. Oh yes it is!! Its ok my life can be complete without kids. Just because you have five and want more (pity your wife possibly?) doesn’t mean I need to have them.
By the way my responses stayed in my head and instead I would just smile.
First night at home
I’ve been awake since 4am, walked into the garden and around it about six times, felt the rain on my scalp and face. Read a fabulous big magazine (gift from a neighbour and the publisher). Check it out here:
I have revelled in cuddles, kisses, touches, smelling and touching hubby. Holding hands is so special when you haven’t been able to do it for four weeks.
Me & Hubby
Photo by CDC on Unsplash – ecoli style
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