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
A year ago, test results confirmed the specialist suspicions; I have terminal cancer, Multiple Myeloma. There is no cure. A year ago. Already. The last year has flown by. Three 2017 dates are now seared into my mind; January 30th, February 10th and my 48th Birthday.
A whirlwind of the new; hospital visits, medical terms and interventions, a community of haematologists, nurses, and Macmillan, a new language of cancer, psychology for self, learning, crying, toughing it out. Some days I said everything was fine, It’s OK that a hash was made of my cannula or I was waiting over three hours, again. Other days, I said ouch or OMG or Sh*t, that hurt, get me someone else please, you have not found a vein, this drip is not working, you don’t seem to be following protocol. I found and used my voice.
Every day I have appreciated the NHS, the team, the help, the efficacy and efficiency of Nurse M, A, and L and others M, J and J; their smiles, their hellos, the added lengths they have gone to and extras they have sent my way, a mask when I’ve needed it, a blanket, a ‘let me know if you need anything’, to ensure I felt kindness, cared for, human, me, Janine.
I’ve had a year of being on the other side of the badge. It’s not been me with the NHS credentials around my neck; they have had them. I walk the hospital halls that are so familiar but I’m not visiting a client, attending a seminar or meeting colleagues. Instead, the appointment is for me, the thick brown file of clinical notes are about me and the graphs and charts on the screen show my body, me, mine.
A year ago. Wow. I still find it hard to fathom. Things are normal but not normal. We get up in the morning. I go to hospital. Hubby goes to work. I rest. I tinker on projects. We go to the gym. We pay bills. Make dinner. Eat it. Watch too much Prime, too much Netflix (Vikings and The Crown, great, aren’t they?!). Life goes on. Yet it is all different, and the same.
I keep saying it ‘a year ago’ because it sounds so strange. It feels like I’ve been managing this for a few months, not a whole year. Last year on my birthday, I was getting second opinions. This year, on my birthday, I will be bunking off one week of Chemo to fly to sun, sand and sea. Thank goodness for that. Can’t wait.
Stress and Urgency
I’ve packed in quality moments in planned more. I’ve had a year of panicking that I may not get the opportunity to see that person again or go to that place. A year of thinking, ‘don’t delay’, get on with, the before I die, I want to, list.
Deep breath. The year has passed. My urge to live life urgently is still there yet the urgency has evolved, is more measured, less reactive, calmer, I think. I hope. I discovered my need to move to Italy (a lifelong dream) is not so intense and possibly not what I want at all. Instead, to be able to travel there frequently and for longer periods of time may suffice and be less stressful (more affordable, more flexible, without the bureaucracy and difficulties of moving to a new country). Or am I compromising too much? Time, I’ve decided to give it a little more time. The right thing will become clear. I’m lucky, I’ll be here tomorrow.
Stress in life is normal, even needed. Now, as my own therapist proposed, the best question is, which stress is worth it? I do still worry (in line with what we currently know about the likely progression of Myeloma) that the next two years will be my best, my healthiest, my most mobile. I do hope to plan and pack in lots of lovely adventures with great friends in 2019 and 2020; ski, sail, bike, travel. Maybe even have a big party or escapade when this 18-month round of Chemo is over. Although, I’m not wishing my months away just yet.
It’s also OK to not go crazy; spend everything I have on adventures or abandon everything I had already planned and put time in to. It’s ok to think I’ll be around for a long time (15 years would beat the odds) to invest in our home, our future, and believe, I will have time to enjoy the benefits of the investment.
I feel a bit weird yet I don’t really know how I feel, one year on. A bit unnerved, numb, maybe? Strangely alive at other times. I haven’t really worked it out yet. I wonder if I’ll ever know? What will show up if I let it? Over the next few weeks? Over this entire journey? The new, yet strangely same life of mine, of ours, that now includes and accepts cancer yet is a life, lives, that refuse to be made invisible, small and weak.
A year ago. What happened to you over the last year? Did you grow? Flex? Build resilience? Laugh, love, cry and learn? I hope so (more laughs than cries with luck).
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Diagnosis, Psychology for Cancer Tagged with: a year ago, Blood Cancer, Bone Cancer, Cancer, Crises and Stress, Myeloma
Music: Where is the love (Black eyed peas), Beautiful (Christine Aguilera) Living On a prayer Bon Jovi, Me – I’m killing killing cancer, sorry good cells
Full dose Chemo started (only half last week)
Glucose test: ‘Brilliant’ according to Dr L; normal=awesome pancreas
Dr L’s comment ‘I’m very happy’ with the way things are going
Blood summary (for normal levels see Chemo Wk 1 post):
|Yes, up from Low
|Kappa light chain
|Lamba light chain
|No, as expected (AE)
I thought I had it handled: the meds, the new schedule of hospital appointments, new food regime, my admin. I’d written everything down: what to take, when; how to take it (with or without food, with or without gloves, morning, midday, night, once, twice or more times a day), listed things to get done, was recording my temperature twice daily and all experienced symptoms. I thought I was keeping on top of it all. I was feeling clever and calm. I was. Then I wasn’t. I felt angry and then a little stupid. I had missed a key drug.
It was Tuesday morning, I was waiting for my cannula to be inserted. A light bulb moment and then a wee bit of panic; I realised I had not taken cyclophosphamide yesterday. Why didn’t the nurse tell me to take it? Was I meant to take it as soon as my consultant gave the go ahead for Chemo? Yes I think I was, yet the instructions were to bring the drug up to hospital so I had expected the clinical team or nurse to tell me when to take it. Oh what a f**k up. I explained what had happened to the Nurse and she said there is no mention of Cyclophosphamide on her medication chart. Later she mentions there is usually a check box for that kind of thing. How much of a calamity was this? It’s a strict clinical trial protocol isn’t it? What happens If I don’t take the right med on the right day?
Nurse M had given me a table chart mapping out which med needed to be taken each day though it doesn’t account for daily frequency nor all of the supplements I’m having to take as well so I had written out a Janine version. Ha! Obviously I’m not quite as on top of everything after all. I spent the end of Chemo day 4 waiting for my consultant to advise the nurses what happens to me now and if and when I should take Cyclo. Dr L comes by about 4pm: “don’t panic, it’s fine, of all the meds to miss, this one was probably best”. He is such a sweetie and seems to say all the right things.
My heart rate (up to 90 bpm) began to return to normal. Dr L suggested I don’t take Cyclo straight away: “it’ll keep you up all night, take it in the morning if you don’t have an infection, fever or high temperature”. Phew. Not a complete disaster then. We talked about the email he’ll send, about it being ok for me to travel (hmmm, hoped he still trusted me to take the meds on time while I’m away) and he checks again that I WILL be back for the start of cycle two. I reassured him I would be.
I felt awesome on Wednesday; the sun was out drenching the garden, I felt pain free and full of energy. I thought; “This is good! I even feel a bit high”. I wondered what was causing the euphoria. Drugs, no doubt. Relief, probably.
A superb short piece of consulting work through a team I wanted to work with had been offered but the start date was yet to be confirmed. Wednesday ended up being a bonus day as I had thought I would be working. It was a cracker of a day. I sat in the garden with S, ate well, relaxed and revelled in not having to race off to a hospital appointment or have saline, glucose and meds shoved into my arm. However, the next door neighbour’s kitten, T, was driving me bonkers.
Psychology – Behavioural Training
I’m chilled out in the sun then out of the corner of my eye, on the garden wall, a flash of white and then another and then a flash of black and white; two paws and a head. A Kilroy moment. Here comes T. He must be dangling down on the other side of the wall, its so cute and funny. I sigh and laugh simultaneously knowing what is coming. I am trying to complete behavioural training with T as he and our cat, Mason, get on well and race around each others’ gardens but T is like a V8 4WD diesel vehicle (a right guzzler); he’s all paws and stomach, bounding around and eating everything in sight.
We like to leave our back door open when we are around. I was trying to enjoy the sun yet train T to stay in the garden and not go into the house (with our neighbour’s permission). The key to any behavioural training is consistency so I told myself I won’t have to do this forever and he’ll get it eventually. I took a deep breath and for the next two hours felt like a yoyo or space ball; up down, up down, up, in out, in out, chase, hiss, “back away from the cat food T”…eventually, though mostly when I WAS looking, he lay down outside, a foot from the door, making a pathetic though cute meowing sound. It could have been a request for Mase to go out to play though frankly, I suspect it was a master manipulator tugging heart strings saying “come on, you love me really, you don’t really mind if I eat you out of house and home”.
Metaphor for Crisis
The up and down with T seemed to be the metaphor for my rollercoaster week. Next thing I know its 3am, I’m awake with an awful thought. It’s always been in my head that we are flying back on the 2nd but I had better check. Sh*t, sh*t and triple sh*t. Yes we fly on the 2nd but we don’t get back in to London until the midday on the 3rd. This can not be happening. The 3rd is a Chemo day and midday does not allow enough time to get blood tests done, consultant review, pharmacy to make up the drug and to get the chemo done. Now what? I scramble around trying to see if the flight can be changed and sure enough it can – if you have a cool £6000. No I don’t think so. I check the site again; hold on, they are still showing as having economy flights back from Calgary as available, albeit for the full price around £900-1000 (a whole flight price again on top of what we have already paid). While not pleasant, it was an option. Si woke and asked me what was going on. I told him and he said “leave it to me”.
Si rang me later saying they can get us back on the 31st for a change fee. I said I can stomach losing one day of our holiday but two is too much; there must be another way and why can’t we get the flight that is showing on the website. Eventually Si gets it sorted and we fly back a day earlier, arriving in time for Chemo the next day. We pay an extra £300 plus for the change instead of £1000 thank goodness though it is for the privilege of flying back economy instead of the premier economy seats we had pre-paid for. I have my first “this is unfair” melt down. Though with the crisis averted I start feeling normal again. I had not been looking forward to saying to Dr L that I’d stuffed up again.
I’d been chatting away to Dr L by email in the evenings and early hours about various little things that needed sorting (who’d of thought an NHS service would include this?) and he pointed out the importance of getting more sleep. Apparently afternoon naps have been proven to “prolong survival”. With the week’s crises thus far overcome, I finally fell into a deep sleep on the couch in front of a random programme, Forensic Detectives (which I secretly like for watching as you don’t have to concentrate; everything is repeated multiple times and it often sends me to sleep).
I wake up with my clever clear and calm possibility renewed and the thought “I have done 4/6 days of Chemo for this month already”. I also wonder if Chemo is tanning me as my bright red cheeks and chest of the morning now looks tanned. Strange, made note to self to ask Dr L about it.
In the mean time, the work start date was still to be confirmed so it looked like Thursday may be free too. Life didn’t wait just because I have cancer or because I was trying to deal with loads of new information and activities; the house insurance renewal turned up, washing still needed doing, bedsheets needed changing…No further crises thankfully.
P.s. S nicknamed my intravenous drip holder C3PO so I gave him some headwear for his trips to the loo…and it kept my scarf clean while in the loo!
Images: Stephanie Kemp and with Nurse Amy’s and T’s parent’s permission
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Behavioural Training, Cancer, Chemotherapy, Crises and Stress, Cyclophosphamide, Missed Medication, Myeloma, Psychology