February 26th, 2021 by Janine
I thought we’d killed them! In fact I had thought they were already dead well before the winter arrived. We looked for them so many times only to be disappointed when we couldn’t see them. I presumed the birds or next door’s cat had made them into a feast. We had stopped feeding them, stopped ensuring the water was clean and had not given them a second thought when the pond froze over.
Yet, here they are. Alive and kicking! More accurately, alive and swimming! And eating! Our fabulous fish, still zooming around in our horse trough from the 1800s; Seville (very orange), Beirut (grey white patches with orange head), and two whose names I can’t even remember! What’s more there’s an extra bod! It seems the fish got the memo about the Covid lockdown and decided to get busy! Now, I need to find a new name for our new addition and rack my brain for the other names. Where on earth were they hiding on all of those occasions we looked for them?
Blue Sky London Day
I am going to add an interpretation to this event in my mind. A helpful, healthy interpretation. We can do that, we humans. Our minds do it all the time. We often add a narrative, meaning or attribution to an event that is negative, unhelpful and unhealthy. When we do, pain and suffering soon follow.
Alternatively, we can also add helpful, wonderful, healthy, inspiring, enjoyable narratives to events, circumstances, thoughts, feelings and sensations. These can help us feel and create pleasure, celebration and hope. I have decided the discovery of Seville, Beirut, Unknowns 1 and 2 and the new boy (maybe it is, maybe it isn’t) are a wonderful symbol of resilience, energy and thriving in a constantly changing environment and when faced with never ending challenges. My darling fish, you are one of my sources of inspiration for 2021.
I too, am resilient, can find energy, thrive and feel alive no matter what challenges me and changes around me. This doesn’t mean I will feel ‘up’ every moment of every day. It doesn’t mean I won’t have the odd tough, emotional, low week. It does mean that I can cope and I have hope. Today, is a beautiful sunny blue sky London day, the fish are alive and I have had some great news about my body.
Undulating caterpillar inching forward to new heights
Long tough road
The horrid month
It has been seven months since I wrote last. Seven months since I came out from under the horrid month in hospital which almost broke me; the month where I had a stem cell transplant, a blood clot in my arm, a dangerous e-coli infection, went bald and could not be supported by an in-person visit from hubby. That was the hardest part.
Seven months since I got home from that experience only to be hit by a c-diff infection. The time has gone so quickly and seems like a life time ago yet also feels like yesterday, raw, significant, a milestone, an awakening. Covid, lockdown, fatigue, pain, overwhelm, slowness, feeling good then feeling shattered, taking on too much then letting somethings go.
The last part of 2020 was a health roller coaster, though mostly without the sharp heights. Instead it’s been more like an undulating caterpillar of three steps forward, two steps back, experiencing loss and frustration about not being able to do as much, or do things now in the way that I used to be able to do them (and may never be able to again) before embracing acceptance and commitment. In recent months I have finally focussed on what I can do, in the way I can do things, and consequently felt healthier, happier and positive about moving in the right direction.
I finally learned that slow can be good. Really learned it. Fully experienced it instead of deep down thinking it doesn’t really apply to me, only to others. I’ve let go of ‘not being good enough’; put a stop to ‘I need to be hard on myself otherwise I won’t perform well, succeed, be respected, be ok, be enough’. I reminded myself of my catch phrase for last year ‘consistency’ and how the long game even if played slowly, gently, is a good, healthy, empowering game to play.
Another of life’s games has been restored: work. I love it. I love being the clinical psychologist I worked so hard to be. I love making an authentic positive difference to other people, helping them learn about themselves, find their answers, try out their new skills, manage their mental health and become their own mental health coach. I love helping people identify what matters most to them, know their values, embody their values daily and use their values to guide their decisions, make and deepen connections, grow and feel whole. Even writing this paragraph feels inspiring.
Skin reaction to UTI infection – immune system out of kilter
Yet another infection
Yes it’s been tough and it continues to be tough. My immune system has needed constant boosts of growth injections to help it stand on its own two feet. Some people with Myeloma recover steadily after their transplant, some are back to work and exercise within three months. I wasn’t. I couldn’t. My body simply couldn’t cope. It needed more time, more nurturing, more monitoring, more help. I needed more help and that’s OK.
Then, once again as I sat safely in the hands of my amazing medical team and began to improve in the early days of January 2021, WHAM, another infection. Another ‘we need to admit you to hospital’. Sigh. This was a bummer.
My mind began racing. I can’t do this again. I don’t want to be in hospital, without hubby, during covid, when the risk of coronavirus is high. I’ll fall apart if I have stay in hospital again…don’t make stupid mistakes, if the oncologist says you should be in hospital, you should go…I don’t want to, it means another PICC line, another chance of a clot, more chances of infection, more chances of low mood and slower recovery. Please, please, please, let there be another way. Is the Universe giving me another test? Really? Don’t I deserve a break? My mind went to all the old negative unhelpful places.
Resigned and ready for hospital admission
Back to hospital
Eventually I came up for air, paused, took a breath and calmed my mind down. I nutted things out with hubby and made a plan. I negotiated with the medical team that I would medicate and monitor at home, have two weekly check-ups and admit myself if I got worse. Relieved I didn’t have to go in, I packed my bags just in case, cried and begged my body to get better. It didn’t. It got worse. Fever, weight loss, no appetite, no energy and high temperatures. Then arrival of a reactive inflammatory skin condition, joint pain, swollen ankles, knees and knuckles. Lovely.
Never by halves Janino. It wasn’t covid, when covid was all the rage and one I wouldn’t wish on anyone. This hiccup was all caused by a bloody annoying urinary tract infection (UTI) that most of us would send packing to the hills. Instead with my immunocompromised self, it stuck around, dug in and said ‘hey, you are not getting rid of me that easily’ and what’s more ‘I am going to wreak havoc all over your body’. I can almost hear the UTI saying, ‘Yeeha, playtime!’
I dressed in clothes to get straight into a hospital bed and reluctantly presented myself for admission at the Haematology Assessment Unit. Six hours later I was home. Yeah. Home. How cool was that!! The team had made another plan. They propped me up with some different medication, organised a dermatology and rheumatology consultation, and knowing how I felt about admission, had reviewed and decided I would recover better and be at less risk, at home. Here I was back in my safe place again. Relieved. Pleased. Begging my body to improve and begging the bugs to stop bringing my life to a screaming halt over and over again.
Birthday meal in Lockdown – delicious! Look at those curls!
Walking the talk: I asked for help
The UTI is gone, the skin flare has gone and I’m on a four week steroid cycle for the reactive arthritis that seems to have stemmed from my immune system going into overdrive trying to get rid of the nasties. I even have a full head of thick hair, albeit an inch all over and bouncy curls I’ve never had before. I’ll take it. The arthritis may be challenging, it’s hard to walk because of remaining swelling and pain in my ankles and knees. It’s virtually impossible to turn anything or pick up anything up with my left wrist but right now I’m feeling good. It’s been a good two weeks.
I’ve even re-learned that it is OK to ask for help; help to put my shoes on, cut up food, unscrew the top on a jar, get dressed, stand up, get to appointments, get in and out of a car. It pushed all my buttons about needing to be independent, not being a burden, and telling myself I just need to get on with it. I learned to ask for support and for asking and receiving support, to be ok.
Catching hubby laughing at me for trying to help myself and my being too stubborn to ask him for help did both annoy me and make me laugh; at myself and him. He knew that gently teasing me was exactly what I needed and often need to help me keep perspective. I can cope with this residual pain and swelling. It will pass. Something else will show up and I’ll deal with that too. In the meantime, the news from my clinic review today made today an even better day.
Hey body – I hope you know how loved you are
The good news
My immune system is BACK.
My neutrophils are now up over 5 after struggling to stay over 1. My body is generating lovely new cells and my platelets are now over 180. My paraprotein levels are stable coming in between 4 and 6 for the last three months. Whoop whoop!!
What’s more, I have tolerated my first Covid vaccine (Pfizer) well, with no side effects. I can now have all of my other childhood vaccinations re-done. My body is ready. Thank you, body! I knew you’d show up. Well most days I did. Occasionally I wondered if you were going to say it is too much hard work but here you are, showing up and stepping up. Thank you!
I am so so grateful because I love life. I still have a lot to do and more importantly, I still have a lot of person to BE. I can BE and do that now thanks to you, body. Once fully jabbed with all the renewed protection, I will be much safer out and about in the community again. The vaccination timing is looking good for alignment to when UK lockdown eases. Yippee.
I am now on six weekly monitoring instead of having to go up to hospital for one thing or another at least once per week. This is thrilling! This is normal life!!
Latest science about Metabolic Pathways in Multiple Myeloma
Cellular Metabolic Pathways in Multiple Myeloma
I am becoming super geeky about Myeloma and have begun reading loads of journal articles about the metabolic pathways, processes, genes and enzymes that cause, maintain and promote Myeloma relapse. I wasn’t ready for this level of biochemical detail before but now I seem to be able to absorb the info and am fascinated by it. The brain fog has lifted! In case you fancy a bit of geeky biochem cancer guff – check out this link
I am learning about how to shut down the pathways, fuel and microenvironment that Myeloma likes the best – predominantly glycolysis and glutaminolysis. This new in-depth knowledge feels empowering, gives me a sense of control, is already helping inform my decisions about further treatment and identify changes and renewed commitments to my preferred lifestyle choices. A new chapter is opening in my life, health and Myeloma journey. I am working on creating the best integrated health care plan that I can.
I am still being realistic. I haven’t forgotten the stats. I am still in my 5th year of a 7-10 year prognosis. For now, nothing is off the table; the traditional medical route, off-label drugs, supplements (specifically targeted to block pathways), Jane McLelland’s Metro Map and How to Starve Cancer approach, Chris Woollams Canceractive approach, meditation, exercise, oxygen therapy. I feel full of hope for thriving, for a high quality life, a long life and I feel good.
I am alive and kicking.
All there is to do now is to be and sit in this feeling, let it cover me like a cloak or envelope me like an exceptionally warm, comfy hoodie, which seems to be all I wear these days!
P.s. Tookie – while I do love you, keep your paws out of our pond!
Me and hubby
Rebecca Campbell – Goldfish; Erik Karitis – Caterpillar; Jon Tyson – Good news; Kristine Wook – Vaccine Teddy Bear; Brandi Ibrao – I hope you know how loved you are; Chewy – black and white cat
© 2021 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Blood Clots, C-diff, Covid, E.Coli, Fatigue, Glutaminolysis, Glycolysis, Metabolic Pathways, Pain, Psychology for Cancer, Stem Cell Transplant SCT Tagged with: Blood Cancer, Bone Cancer, Cancer, Crises and Stress, Fatigue, Immune, Immunosuppressed, Mental Health, Metabolic Pathways, Metabolism, Myeloma, Psychology, Stem Cell Transplant, Tumour Microenvironment
July 25th, 2020 by Janine
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