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
© 2020 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Blood Clots, E.Coli, Myeloma Treatment, Psychology for Cancer, Stem Cell Transplant SCT, Symptoms and Side Effects Tagged with: Blood Clot, Bone Cancer, Cancer, Chemotherapy, e-Coli, Fatigue, Mucositis, Myeloma, Psychology, Treatment, Worry
FISH test – Myeloma cytogenetic analysis is an examination of the bone marrow cells to look for chromosome abnormalities. It can be an indicator of likely worse response to treatment and lower life expectancy.
My result: NORMAL (YIPPEEEEEEE!!!)
More low down:
Who knew cancer could be fun? Yes, it’s a whirlwind and it’s also a completely new project. I always love the beginning of a project. It’s the middle bit that’s hardest. Though somehow, I normally always find a way to deliver because non-delivery doesn’t really wash with me. So, I have a new project: Understanding and Managing Multiple Myeloma. I’m certainly not bored, there is so much to learn, do, research and action. Using my brain and academic skills to work out a plan for handling this stuff feels great. As Chemo continues, I add to my knowledge of how the clinical trial team works, how my Chemo works and how to get what I need from the hospital and hospital teams.
One of the questions that several friends have already asked is “how is Multiple Myeloma different from Leukemia?”. Watch this space, I’ll do a separate post on this soon!
It’s been a funny old first week of treatment, especially trying to fill a ginormous container with my urine over a twenty-four-hour period and then, because I am not allowed to carry anything heavy, watching Steff literally ‘take the piss’ up to hospital for me! Good to get rid of that, though urine seems to be a theme for the latter half of the week. I end up having to go to the loo every few minutes and begin to suspect I have a bladder infection. Oh yay. Then when blood turns up in my urine too, I panic and think sh*t ‘this is not the start I wanted’; I said ‘smooth’ Universe please. My first week of chemo is meant to be ‘smooth’!!
Thinking about the blood, I start to wonder if I had overdone the Tumeric. After all, I had gone from barely using the stuff, to shoving it into everything because it is supposedly one of the best things you can do for yourself when fighting cancer. (I’ll do a separate post re Nutrition later). The previous day I’d added Tumeric to a green smoothie, drunk two Tumeric Almond Milk lattes and then had more in a curry. I wasn’t in any pain when peeing, (phew) but the stream of red was rather disconcerting.
Anyway, it turned out Tumeric had nothing to do with it and I had managed to pick up an e-coli bug. Lovely. Not. Under instructions, I double my anti-biotic dose. Still I was strangely relieved that Tumeric wasn’t the culprit. The new Tumeric Almond lattes were meeting my need for a warm hot drink when out and about. I have given up coffee and there are only so many mint teas you can drink before feeling like a herb.
I laughed when I got a Whatsapp message from Dad which was signed off ‘Live’ instead of ‘Love’. Even good old auto text was getting in on this Cancer game. Found myself singing to myself this morning, in a vaguely Nashville twang…”I’m killing cancer cells and saying sorry to the good cells that have to go with them”.
Discovered that two of my drugs are sitting in Lactose, something I’ve avoided for an age because I have been intolerant since a baby. If I drink a glass of milk I end up with instant cold, phlegm and other nasties. I talk to my consultant about alternatives but he’s keen for me to hang in there with them if I can; I resign myself to having a runny nose every day. I do love some of the other drugs, especially the steroids. Waking up with energy is such a novel experience for me.
Waiting to go into my second Chemo session, I send an email to a friend about all the great things to do and places to go in Italy near Naples and the Amalfi coast. Fun reminiscing and good pre-Chemo therapy!
I start thinking about the lessons I learnt from when I experienced a road traffic accident (RTA) years earlier (an unlicensed driver drove into me from behind, pinning me from the thigh down under his car while I was on my moped and stopped at a red light). I had rushed back to work far too soon after the accident and worried about everything else except healing. I decided that would not be the case this time. This is the time for self-care, self-compassion, for allowing time to receive treatment and recover from it. This is also the time to ask for help (another thing I did not do during recovery from the RTA).
Who do I want to be through this Cancer journey? How might this change as the journey continues, gets harder? I feel Psyched UP. I don’t feel like a fighter or like I’m in a battle – I don’t really relate to or like those words. I feel accepting, practical yet intolerant of anything other than managing this well and giving my body the best chance to overcome this challenge. I reaffirm I want to be clever, clear and calm through this, for as many days as possible, for as long as I can, because right now that is what feels right.
I pick up the fantastic book Mindfulness for Health: A Practical Guide to Relieving Pain, Reducing Stress and Restoring Wellbeing by Dr. Danny Penman and Vidyamala Burch. I have often used this successfully when working with my own clients. I search for great visualisation and meditation tracks on you tube. I download Headspace, the mindfulness app.
End of week one
A social end to the week. Catch up with lots of lovelies from my psychology programme and receive an amazing goodie bag including a mermaid blanket! I manage to go the gym. Exercise feels good. I feel good, happy; like a 70s hippy on Quaaludes. Then I noticed the bruises and tracks on my arm and laugh. Other gym goers who may have noticed me stretching left right and centre probably think I’m a junkie!
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Blood, Cancer, Chemotherapy, chromosome, cytogenetic, e-Coli, FISH, Mindfulness, Myeloma, Psychology, Tumeric