Category: Myeloma Treatment
56 days since my stem cell transplant (SCT). I’ve now been home for the same amount of time that I was in hospital, 4 weeks. Hospital seems like a year ago. Life can be summed up by two words; SLOW and PATIENCE.
I’ve been slow before (when temporarily injured or after a knee op or three) but this is a new slow. Walking from room to room is slow, sitting down, getting up, slow. Asking muscles to work, their receipt and action of requests, slow. Stairs well, they may as well be Everest! All the yoga flexibility and strength pre transplant has evaporated. Turning on taps, opening containers, putting on shoes are all a huge challenge. Stretching is a mammoth task, let alone trying a forward bend or downward dog. I’m feeble, weak and extremely fatigued. Putting feet up after a shower, afternoon naps (usually two hours) and early nights are a daily must. Sitting down on the closed loo seat mid-way through brushing my teeth is novel yet frequently necessary; standing for two minutes in front of the basin is a tall order. The pace of my life has almost ground to a halt and my new norm is slow.
Stairs may as well be Everest
C-diff (Clostridium difficile)
I am so happy to be home. The night I was discharged I was ecstatic to be out. I’d recovered from the worst of e.coli, was on the road to recovery from SCT when WHAM. Another infection turned up and walloped me in the face. Well, more precisely it whacked me in the stomach and bowel, attaching me to the loo once again. At least it was my loo, with nice soft paper, a wide sink in which my hands actually could be washed without splashing the floor and my feet, with predictable hot water, familiar sprays with berry aroma and none of that hospital cleaning fluid smell. At home, even the loo was heaven. The nurse apologised for not being able to pronounce the intruding infection’s name. I laughed and reassured her it was fine. Unfortunately I could pronounce it all too well. The last word was Italian for difficult!! We agreed it was aptly named and settled on the more commonly used c-diff!
Slow slow slow. Taking it slowly and doing everything to prevent going back into hospital was the name of the game. I fended off the doctors for a week. I reassured them I’d be fine, reminded them that my temperature spikes were nowhere as bad as two weeks previously and that I could handle the infection at home if they just gave me a nice heavy duty antibiotic. Being readmitted would have taken the last bit of happy I had left in me and zap me of any remaining optimism about the transplant outcome. To the doctors’ credit they gave me their dubious looking faces but didn’t push it. They settled for giving me a three hour drip of fluids and the antibiotics. I didn’t realise how rough I looked, sitting in my own room in Haematology, having been assigned my own toilet in order to keep me away from everyone else and no doubt keep everyone else safe from me.
Home is only safe because hubby is here. His hidden talents and remarkable loving caring personality have come completely front and centre. I know I’ve said it before and I’m going to say it again, I am so grateful and extremely lucky to be loved in this way. My heart hurts for those going through SCTs without the support of a caring partner, friend or special loving family member (even when those people prefer space).
Hubby’s been doing all the cooking, washing and stuff around home with no input from me. I don’t do his amazing dinners (perfectly cooked fish with burnt butter caper sauce, delicious lamb with salsa verde or Persian aromatic salad) justice as my appetite has not fully returned and my taste buds are just weird. He gets up in the night (2am, 4-5am) to check I’m ok, to make sure I’m not stuck or being sick, to see if I’m wide awake (often at times the checks took place in hospital) or to see If I have fallen asleep on the sofa.
Our pond with gentle fountain – such a pleasure
He drives me to hospital, often twice in one day. He frequently waits for hours or goes away and comes back again like an on-call chauffeur so I’m not standing around for longer than I need to. Hubby has made sure the garden is immaculate and created a pond with a water feature because he knows I love the sound of running water. If chia seeds, baobab and pea protein are super foods then he is a super being (or bean, my new nickname for him)..sought of sung like superman except SUPERBEAN!
Hospital, new look for waiting
Waiting and self as benchmark
Waiting is the most predominant and draining feature of hospital now. I go twice a week for checks. It starts with an early morning (7.30am) blood test, a wait for results and then an occasionally short but usually long stint in the Haematology Supportive therapy clinic. Though from today I only have to go once a week (whoop whoop!). Other than the general stuff the results the med team are most interested in are my Neutrophils and Platelets and the question asked is, do I have any? The good news is that while my Neutrophils (immune system) have been roller coastering around between .69 and over 1, teasing me as they get towards 2 before falling back again, my platelets have been doing a fairly steady climb and are now at 123 (well out of the woods of the 30s when I would need to be given a blood transfusion). The rise in platelets mean my body is generating new cells. Lets hope they are clear of Myeloma. Once my Neutrophils get over 2 and start staying there, it means I will have some semblance of a rebooted immune system that might just be capable of having some childhood vaccinations and allowing me to be around more people.
The slow, the fatigue, the compromised sense of self, the need to avoid boom and bust, the extreme patience needed with myself about every little thing I try to do and decide not to try to do, is all normal for this point in the transplant recovery process. I tell myself to remember this and to not worry about what others that are post SCT have been able to achieve, start again or do before I have been able to. Instead I focus on using myself, yesterday or two hours ago as my benchmark. Have I been able to do anymore, any faster, any more normally than yesterday or this morning? Yes, great. No, great. It will get better. I will get stronger. My platelets and neutrophils are my friends and working on supporting me as soon as they can. Give them time.
I’m not good at waiting. Though I’m much better than I was before I was diagnosed. Hospital and appreciation of the NHS can do that because waiting is part and parcel of hospital life. I’m still rubbish at it. Last Thursday I waited 1.5 hours with only a 30 second conversation with a nurse letting me know they are waiting for the doctor. It’s understandable but frustrating as I see other patients’ doctors arrive, see them receive their treatment and leave before me, especially when their appointments were later than mine. Still I try to remember the overall amazing service I have received over the last 3 plus years. Some days it is hard though and I want to be angry, upset and cry. Unhelpful thoughts drift in; I booked this early appointment so I wouldn’t have to wait so long (again), this is wasting my life, it doesn’t take this long for blood results to come back or can’t you see from your board I’ve been waiting an age – do something!
My clinical psychologist side eventually kicks in and internally speaks to me – the person living with cancer, the Janine living with cancer treatment and its impact. Notice your thoughts and feelings, acknowledge them fully, connect with them (allow yourself to fully experience them, where and how they show up in your body, their nature, their depth, their source) and then once you have given this process time, engage. Engage with the present world around you (notice three things you can see, hear, smell right now, notice three things with yellow in them).
It’s ok to be angry, it’s ok to be upset and it’s very ok to cry. It’s also very ok to find your voice and ask the nurses again, what is happening and will the doctor come soon? Breathe, stay in this present moment, remember too who you want to be in the world, with others, with nurses, with doctors. I want to be kind, calm, clever and clear. Good, there is clarity in your values. It’s fine to say, calmly, to say gently to the nurse that you are upset. It’s ok to show tears. You can still be kind, still recognise the wait is not her fault, that she is doing her best. You can ask her to see if there is anything else that can be done.
Remember no matter which thoughts come into your mind, acknowledge and connect with them, engage with this moment, right now, moment by moment and then choose to place your attention on thoughts that are helpful, on actions that are supportive. If you are sitting in that hospital chair or waiting anywhere, choose to read, catch up on messages, listen to the radio, write a few notes for this blog, laugh, smile, marvel at your ability to shock yourself as you go past a mirror not recognising the person looking back at you (I so often forget I am bald and look like others’ common perceptions of a cancer patient). Do this rather than sit, feeding the anger and anxiety by watching nurses and other patients, dwelling, being hooked by, ruminating on the thoughts that are leaving you feeling angry and upset.
Hey self clin psych Janino, you are pretty handy at times. It was no coincidence that I met that side of you/me before being diagnosed and travelling life with cancer was it? Thanks for being there. Thanks for helping me apply strategies to lift myself from the fog, the negativity, the anger and sadness. Thanks for helping me notice the little things as well as the big things. I laughed when I discovered my trackie pants were on around the wrong way today. I was thrilled when a café gave me my favourite jacket, having kept it for me overnight after I walked away leaving it on a chair outside. Thank you.
Hubby, our 14 year wedding anniversary comes up this week. Thank you, from the bottom of my heart to the top, for everything you are, you do and for putting up with my slow.
Me & Hubby – headshots
Yogi Purnama – Superman
Michelle Henderson – Mr and Mrs
Macau Photo Agency – Waiting
Erik Nielsen – SLOW
Martin Jernberg – Everest
© 2020 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in C-diff, Fatigue, Myeloma Treatment, Psychology for Cancer, Stem Cell Transplant SCT Tagged with: Cancer, Fatigue, Myeloma, Psychology, Recovery, Side effects, Stem Cell Transplant
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
You are a bit of bitch really aren’t you? Very clever. Coronavirus, Covid19 or whatever you are calling yourself, you’ve sent the world in to a tail spin. You’ve made it even harder for those with less and caused loss, grief, fear and stress to many. You’ve caused economic chaos just when the country’s debt was coming under control. Corona1, you have brought the best and the worst out in people. You’ve given the scientists, statos and health analysts a right royal challenge to get their teeth into. I hate you. I don’t want to die from Covid19, Cancer already has that sewn up. I’m cool with that. You on the other hand are ruining my precious life. Now bugger off.
Coronavirus Care Bear
Every week when I’ve gone to hospital for chemo, had my blood taken and received an injection, I’ve risked catching you! My body perceives such a high threat level that is on edge the whole time I am there. I am antsy when I have no choice but to walk down corridors where physical distancing is impossible. I wear double masks, I wash my hands constantly and in my mind you hover on every surface, everyone’s lips, everyone’s clothes. I cringe with every sneeze and cough heard. My body is so hypervigilant and tense that when I finally get out of the hospital I am thoroughly exhausted.
You, Corona, are a cruel cruel virus. I took time to focus on being as well as I could during my current cancer treatment and to foster as much calm as possible. Huh! Calm is very hard to come by most days thanks to you, let alone on hospital days when it is nigh on impossible to feel relaxed.
I was trying to get my head around you Corona and your ramifications, for my bubble of hubby and me, for my loved ones, when strangers suddenly became very scary entities. Minding my own business in a hospital corridor, a man walked towards me, looked me directly in the eye, shook his head seemingly disapprovingly and then, coughed. He coughed again, purposefully. He looked directly at my face, coughed a third time and then with his hands hurled his cough at me. I was shocked and almost stopped. He threw his head back, laughed, looked at me again and grinned. Then he carried on as if nothing had happened. So too did the person behind him.
It was over in seconds. My thoughts raced – is that it? Corona, does he know you have infected him? Did he want me to get sick? Why? What did I do? Isn’t having cancer enough? This happened the week before official lockdown here in the UK. If it was your idea of a practical joke Corona, you got me. I was worried for weeks, waiting to see if you had landed, were going to take my breath away, make me very very sick or you know, kill me.
Once in lockdown, this incident would be called assault. The man could be found, arrested and charged. I would report it. At the time I didn’t know this and it was the last thing on my mind. I was in shock, kept walking and found myself trying to work out what had just happened and why. I remember feeling and thinking that somehow he had taken offence to my looks or seeming wealth. I had my headphones on and was listening to a podcast, he looked dishevelled and possibly impoverished. Did he think me too wealthy, too fortunate? Well I am fortunate in so many ways however that doesn’t excuse his or anyone’s attempt to cause me harm.
On reflection Corona, I realised there could be a million reasons why he did what he did, none of which might match with my first interpretation. I would never know his rationale so there was no point me thinking about it anymore. Yet somehow, Corona you had made me a target, when I already was one, thanks to cancer. You forced me to think about a whole heap of virus stuff that I really didn’t have a lot of headspace for. Instead of hospital being safe, the place I go to heal, you have made it a very scary destination.
Thanks a bunch Corona.
No more adventuring
Maxed out vulnerability. People living with (or dying with, if its a bad day) Myeloma are in the seriously at risk group. If I followed the full UK guidelines to the letter, for people who need to shield, I wouldn’t be sleeping in the same room as my husband, spending time in the same room as him, cooking and eating with him. I would be alone in a bedroom, only allowed out for bathroom breaks and to use the kitchen separately. That wasn’t go to work. Not unless one of us got the virus or hubby had to go out of the house a lot. You almost stuffed up my home life Corona. You certainly stuffed up my adventuring (two cancelled trips that I was so looking forward to and that would have balanced out being on crappy treatment) . No, you were not going to get it all your own way.
Lockdown hasn’t been all bad. Consistency has been my main word, mantra, possibility, call it what you will. I committed to myself to choose somethings I would do while unable to go out and do them consistently. In fact, you gave me a renewed sense of purpose, a new start line. I checked in with myself, wrote a list of things I wanted to do and began chipping away, doing a little bit of one thing each day until it was complete before moving on to the next task. Thanks to being stuck at home with less outdoor distractions I’m feeling good about lots of little and not so little achievements. Cheers Corona.
Not us (obvs) but cool pic
My new morning routine makes me feel great. I re-established my intake of a litre of water with lemon juice, my herb drink and added in yoga. Hubby and I completed two 30 day yoga programmes and are part way through another with my favourite online teacher Adriene from Austin, Texas. (links at end). My downward dog is the bees knees. My hip flexors on the other hand….are getting there. I’m loving it.
For the first two months I cycled on an indoor bike at least once a week, paced the length of the garden until I got dizzy or had listened to hours of a podcast and worked out with weights. I felt stronger and healthier than I had in an age. I finally submitted two research papers to journals for peer review (core topics: dementia, family involvement, interventions). Another paper I was involved with, was published. Manual client notes from work completed prior to using a record system are now online. My continuing professional development log is up to date. It even contains new entries from the multiple courses I’ve down during lockdown. I’ve enjoyed growing my Acceptance and Commitment Therapy (ACT) skills.
I baked gluten free, natural sugar only, snacks and slices that all turned out to be edible (by me at least). I cooked loads and cleaned like I had never cleaned before. Well that’s not true (some of the end of tenancy flat cleaning days were mammoth) but I cleaned more thoroughly than I had in an age.
Silver Rooster Easter Bonnet
I’ve kept in touch with loads of friends. Had virtual drinks and dinners, coffee catch ups and laughs (especially over the Easter bonnet competition which included a plane and a silver rooster, no less). Had friends drop off yummy treats and delicious fresh fish. Clapped for the NHS and frontline workers. Formed deeper connections with my neighbours through whatsapp about shopping, helping out, puppies, compost, birthdays and more. Learned about tiktok, seen some things about Trump and some other dodgy characters that I never want to see again! Corona you have forced a new world upon me and I will remember the bright spots. Even though….
low day(s) duvet day(s)
You almost got me. My mental health took a hit. I made it to about day 50 when cabin fever hit. Half way through the worst 24 hrs Corona, I discovered my knickers were on inside out. I didn’t care but it did sum up the day.
You are scary but I was over being home. I was desperate to go for a long walk. My right hip was giving me grief and I knew walking would help. In early March, my hip decided to drop and rotate forward (it’s done this before). Joy of joys. You didn’t care Corona. You had your own schedule. Before I could book a physio appointment to feel the relief of alignment you made everyone stop work and close doors. No face to face let alone hands on work was allowed. My body hated you.
My hip got steadily worse. The pain was constant, worse when I sat down or lay on that side. I felt like one of those bobbing dog toys hanging from a car driver’s mirror; up, down, side to side, up down, side to side. I’m surprised hubby didn’t slip me something in a cup of coffee so I just stayed still for a few hours.2
Joyden Woods Walk
Dr B gave me permission to leave the house!! As long as I avoided everyone. He wanted my mental health to be ship shape because the next step of treatment is a tough one. I woke up early. There was no one about. I put my masks on and walked. Walked for an hour. I breathed deeply. It felt so so good. Ha Corona. Take that!
Despite you, the pain in my hip is now improved and I’ve completed another seven months of chemo.3 OK my consistency has gone to pot over the last two weeks but part of me loves that; I’m human after all and needed to rest my painful hands and wrists. Even so Corona, your attempt to disrupt my treatment, health, heart and hope has been futile; I’m ready for the stem cell transplant (SCT).
It does look like I’m going to have to do the SCT alone. Without face to face visits from hubby or friends to make me laugh and just be with me. Corona, you had to have the last word didn’t you? You really are a bitch.
1 I can’t get the chorus from My Sharona (The Knack) out of head so Corona, my nick name for Coronavirus/Covid19 stuck, sorry.
2 Not a joking matter I know.
3 A quick update on this to come in another blog
Great yoga sessions and teacher:
Sarah Kilian – Bear with Mask
Robin Benzrihem – maskonground
Robert Collins – man_woman_dance shape
Mika Baumeister – thinkingmask
Jurien Huggins – duvet
Ashkan Forouzani -stayhome
Anastasiia Chepinska – ClosedCovid
Others – Me & Hubby
© 2020 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Covid Tagged with: Cancer, Coronavirus, Covid, Covid19, Lockdown, Mental Health, Virus, Yoga
I listened to an interview with best-selling author Marion Keyes today and she talked about writing emotional landscapes. This is a wonderful phrase; it captures the many random thoughts I have about life, being human, living with cancer, with chemo, with uncertainty. Random thoughts, the theme for this blog, a collection of moments from the last two months where thoughts appeared in my mind as I sat, walked, waited, tossed, turned, fumed, cried, ached, appreciated, smiled, laughed and loved, always loved.
House music is on my mind and in my ears…though the Brighton weekend for clubbing was a bust – great weekend – we just didn’t find a stylish club with fab house music. Our guys went ahead to do reconnaissance. They didn’t even make it inside one club. A group of people came out (not fast enough according to them) saying very loudly how sh*t the club was, dark, dingy, crap music…needless to say we abandoned that idea. Fab friends made up for clubbing disappointments. After all, we are fortunate enough to live in one of the best club cities in the world so maybe we’ll stay local next time!
The chemo regime called VTD is different this time, cannulation monthly only – yippee! The weekly injection of Velcade isn’t so bad. I take one dose of anti-nausea beforehand and haven’t needed anymore anti-nausea drugs afterwards so far. I end up with a little localised bruising. The drug kicks in fully after about 36 hours…funny sensations, aches, pains (all bearable) in my bones…I visualise Myeloma shrivelling and dissolving.
The Thalidomide seems to impact my quality of life a lot more than the Velcade. Yes that Thalidomide, the one that causes horrible side effects for foetuses. It is no longer given to pregnant women but was discovered to have a positive impact on cancer, see here), The daily 80mg dose knocks me out and I feel tired ALL THE TIME. The stuff is toxic. A nurse who first administered the pills to me was gloved up and handling it like it was a hot potato, doing their best to avoid all contact with the pills. I wondered what the hell I was about to put into my body!
Even the weekly steroid doesn’t combat the lethargy (but it has made me eat more and I’ve put on 7kg that I don’t want!). Early morning energy is now a distant memory. The other unwanted side effect of is my stomach is like a horizontal crackerjack. I take Thalidomide and out my stomach comes, tight and large, making me look like I have consumed a whole loaf of gluten filled bread or more ironically, I look pregnant. On top of the VTD chemo regime I inject nightly Clexane, a blood thinner to stop the Thalidomide from causing blood clots.
Oh the layers…take this because it helps this but then take that because to take the first thing you need that thing to stop the bad things of the first thing….and round and round it goes….Still, the regime is working and the presence of Myeloma in my blood and bone is dropping again, down from 17 to 11. Hopefully it will continue to fall.
Doesn’t it seem an age since Christmas already? I nicked named last Christmas, Creepy Chrimbo because the hospital was strange and very different from usual. My chemo didn’t stop just because it was Christmas eve or New Year’s eve. I am grateful for all of the hardworking nurses who managed to fit in everyone’s treatment to a short week so Christmas Day could be the best it could be.
Hospital halls were eerily empty and I could hear every footstep I made ringing in my ears. I felt like I was in an Alfred Hitchcock thriller or that Jack Nicholson’s horror film grin would appear around a door jamb any second. The sense of being alone was made worse because the Chemo Unit is down the end of a long corridor, I often feel like it’s ‘shoved away’ with the renal unit, out of the way because somehow we are toxic and ‘they’ don’t want us near others, the healthier people, in case we contaminate them somehow. I know this is silly but then maybe not? Chemo is after all, hazardous, noxious and needs careful handling so maybe it is purposeful that our unit is past the research centre and beyond the other wards. I know it isn’t helpful to think this way, a little negatively, like we are not really wanted and are merely being put up with somehow. The NHS staff certainly don’t perpetuate this story; they are friendly and welcoming.
Just before I was alone in the long corridor I noticed a woman on a hospital bed being wheeled towards the renal unit. I try not to look at people when they are being wheeled around in public view, I often think it is fairly undignified yet obviously a necessary event in hospitals. I wouldn’t want to make eye contact with anyone if it was me on that bed. I’ve noticed some patients close their eyes, put a pillow or blanket over their face – possibly to gain some privacy in a very public space so I try to offer it by glancing away quickly. Though if someone in a bed looked directly at me I have decided to smile and hope they find it reaffirming, reassuring, and non-judgemental somehow.
This woman was on her side, looking away. It was after 5pm on the 24th and I wondered what her Christmas would be like and what her story was. Would she be sad to be in hospital over Christmas Day? Did she have family who wished she was with them? Would they visit her? Did she want them to visit? Or was she secretly relieved she had the best excuse to not ‘do’ Christmas this year, to rest and focus on herself instead. Or maybe she didn’t celebrate Christmas at all and instead would be disappointed to be missing out on holidays. These thoughts vanished as I found myself alone in a grey corridor with white walls, in silence where there was usually the hustle and bustle of nurses, doctors, patients and public, trolleys and endless supply boxes.
The silence strangely continued outside where the usually busy main street was devoid of cars and people. This reminded me of the contrasts of Christmas, wonderful, fun, exciting for some and challenging, triggering, or lonely for others.
The new buzzword popping up everywhere is Repurposed. From transforming old furniture into something new or turning one person’s rubbish into another person’s useful item, and now, the latest thing is repurposed drugs. Essentially, using drugs already approved by the medication regulators for treating non-cancer illnesses, to treat cancer or be added to existing cancer treatments to increase effectiveness.
When I first came across this I thought it was yet another cancer fad because the headlines gaining traction were about repurposing dog wormer! Yes you read correctly. Cancer patients were shouting out about how an anti-parasitic drug called Fenbendazole usually used for deworming dogs had cured their cancer! I was very dismissive. I don’t want to miss out on something that works but I don’t want to get caught up, distracted, invest time and precious energy into the cancer equivalent of the latest diet or beauty treatment. Dog dewormer seemed to be more in the fad than the credible category and on par with ‘take turmeric’ and your cancer will vanish. While I am a big fan of turmeric and curcumin and take it daily, I do not believe for one second that it (or Fenbendazole for that matter) will single-handedly cure my cancer or cure anyone’s cancer.
But then I got thinking, had I been too quick to write off this idea? Medical discoveries come in many forms, (like the Thalidomide scandal) from unlikely places so why wouldn’t it make sense that a medication that addressed one illness, whether in animals or humans, might also be found to have anticancer effects? I took another look and found this. Click Here
I googled some more (as you do) and came across some other interesting stuff…
Trials and projects involving existing non-cancer drugs are now being investigated for their effects on cancer – these are so important because if found to be effective they are likely to be approved for cancer treatment quickly, be cheaper and more widely accessible as they are already approved for human use and side effects are known. These links explain more..
Imagine living with cancer, walking in to a clinic, having your DNA and genome sequenced by a friendly lab technician and walking out knowing a specialist will create a cancer killing virus tailored just for you and your cancer. This is another exciting development that doesn’t seem too far away now…it’s not science fiction! Check out Andrew Hessel, founder of Humane Genomics, he explains how tailor-made viruses may one day cure cancer.
I wonder how I will be repurposed…will I be fertiliser for a beautiful oak? Will I return as a stretchy, wiley happy cat? A roll of loo paper (someone’s revenge though at least it’s useful)? Or a spider, imagine eight eyes to people watch with….
I’m due an upgrade on my phone. Chatting with my wonderful friend and hairdresser K, we laughed about our mobile phone providers and how I could easily be expected to sign up to a new contract that would out last me! Humour and especially dark humour is an emotional landscape I find really helpful.
It is a high blue sky, crisp cold and sunny day in London today. This emotional landscape is beautiful and I found myself smiling, A LOT.
Woman in the woods – Andrew Neel on Unsplash
DJ – Jernej Graj on Unsplash
Dog Wormer picture (care of The Sun)
Others – Me & Hubby
© 2020 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Myeloma Treatment, Results Tagged with: Bone Cancer, Cancer, Christmas, Dexamethazone, Dog Wormer, Drugs, Fenbendazole, House Music, Myeloma, Repurposed, Steroid, Thalidomide, Velcade
When I left you last, Mum was in recovery from breast cancer and Dad’s melanoma was kicking him in the groin (literally). They are amazing people, and fortunately for me they coped and are coping incredibly well with the challenges. Apparently this wasn’t enough to contend with, a trifecta was called for though I thought we had already achieved that. Not to be upstaged, my cancer leapt out of hibernation. My dreaded paraprotein levels (42 at their worst, down to 1 after treatment) are now at 17.
It was gutting to see the Myeloma active again after such a short time. I was again hit by how I wasn’t ‘special’. I wasn’t going to be the person who is miraculously cured by the new cutting edge treatment. I wasn’t going to be one of the statistics up the right (and right) end of the bell curve. I was firmly in the middle of the pack. My body had responded very well to treatment but I was one of the many people who experience the peripheral neuropathy side effect and have their myeloma become active again within 6 months after first treatment. I was well and truly on the path to being the ‘typical’ (albeit younger than usual) Myeloma patient with an 8-10 year life expectancy after diagnosis. I’m almost three years in now…well, you can do the maths.
Tests, tests and more tests
The big upside of being on care as usual and watch and wait, is that over the last six to nine months I haven’t had to go to hospital every week, its mostly been monthly. Except that while my schedule was clearer, I had time to pack in everything that had been on hold while cancer took pride of place. More tests, x-rays, MRIs; I felt like an old hand, navigating the hospital walkways, waiting rooms and procedures with robotic familiarity. The increasingly unbearable pain in my hands, arms and ankles was not Rheumatoid Arthritis after all but more likely the bloody Myeloma.
A rotator cuff injury in my left shoulder (to go with the benign lesion that was already there, maybe it was lonely?) needs physiotherapy. It’s about nine months since the referral, no sign of an appointment yet. I have had a letter asking, do I still want an appointment?. Yes I bloody well do thanks! Well in that case, don’t contact us we’ll contact you, was the reply. Note to Health Secretary (It’s not Jeremy Hunt these days is it, hope not, though sadly I don’t know who it is and if they are any better, could they be worse? That thought is scary!!). Anyway back to the note – Dear Health Secretary, please get the physio department more resources, they are swamped! Hmmm.. not much time off hospital after all.
Treatment two in the sequence for prolonging life after diagnosis with Myeloma
My next round of treatment was due to start when my paraproteins were up to about 30 (or if they started increasing rapidly). Mine had been rising steadily in 1-2 points a month. A January 2020 start back at hospital seemed a reasonable prediction and hubby and I had talked of getting away for a, never before done together three month trip, prior to the treatment shackles going back on. When Dr B said we need to start treatment ASAP, I’m worried about your back. I said no you don’t, we’re out of here. I’ve been dying to go to the middle east so as I’m dying, I’m going!
What I really said was, boo I had hoped it would be January not October, can I put chemo off for a while? He asked if I felt well enough to travel. Of course I said yes. I really do wonder what I would have said if I hadn’t felt well enough. I suspect I would have lied, said yes anyway.
Patient choice and positivity
I was going to test the concept of ‘patient choice’, there is such a thing isn’t there? Nothing was going to stop me getting away with hubby. We both needed a break and this rare chance where we had time off work/hospital at the same time was not going to be missed. I asked what I could do to prepare for the next round of chemo. Dr B said the best thing was to stay positive.
Ha, all the more reason for me to travel before starting treatment then. Being my ‘adventurer self’, experiencing new places, cultures, food, wine with the love of my life, IS what nourishes my soul and makes me feel positive! We negotiated with Dr B for chemotherapy to start in six weeks; not the three months I’d hoped for but brilliant all the same. A strange mix of worry (about treatment) and euphoria surged through my body. I noticed a feeling and realised it was excitement! I hadn’t felt that in ages. Walking home from clinic, visions of Israel, Lebanon and Jordan flooded my mind. I went straight in and booked flights.
I’m back now from an amazing trip. I feel ready. Really ready for the next phase of this Myeloma madness. I even feel hopeful (albeit on top of my usual layer of pragmatism) that I could still be a wee bit special. I could still get that fantastic recovery that may not be likely but is POSSIBLE.
Month one of the new treatment regime. Hit me with it Doc. I can take it. I’ve just knocked three more countries off my bucket list (big grin).
Images: Various places in Israel – Hubby or Me
© 2019 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Cancer in my family, Myeloma Treatment, peripheral neuropathy, Psychology for Cancer Tagged with: Blood Cancer, Bone Cancer, Cancer, Dying, Family, Myeloma, Para Protein, Patient choice, Positivity, Psychology, Travel, Treatment
Peripheral neuropathy. A fancy pants way of saying pins and needles. Except it is a bit more than that and the more, is scary. When tingling on the soles of my feet and in my hands turned to prickles and cried out for attention, I had just started my 14th cycle of chemo. At night, as if hedgehogs at a rave, the prickles began dancing around, keeping me awake. My self congratulation for having coped well so far and immense gratitude to my body now seemed a little premature or at least to have jinxed me. A strange oscillation between numbness and pain set in. At first, it came and went so I wasn’t too worried. I kept up the once a week, Maintenance Chemo.
The pain got worse. The tingling turned to a sharp micro needle feeling and the ache crawled up my left arm. I remember thinking, this isn’t good. I started talking to hubby about wondering whether the benefits of chemo still outweighed the side effects. We decided they did. I kept going.
So, did the sensation and the pain. The cannula insertion became excruciating. The drip of the drug into my forearm was ok but by the end of the treatment the whole arm throbbed; I hadn’t had that before. In the days in between chemo, the pain, numbness and needling rollercoaster, deepened and didn’t let up. I felt increasingly fatigued, distracted and unable to concentrate. Pain will do that. The symptoms eased a little if I did nothing and stopped using my hands altogether. Have you tried that? It is nigh on impossible! My weekends became slow, sedentary, dull; low mood came a calling.
Peripheral neuropathy doesn’t like hands
Then it hit me; the way I hold a pen had changed. The length of time I could hold a hairdryer and the way I used a hair brush had changed. Whenever a cap needed to come off a bottle, I now ask for help. I was using two hands to open doors or press flush buttons on toilets. Cooking had virtually stopped (and I had thought I was being lazy) instead lifting chopping boards, holding pans, taking roasting dishes out of the oven were difficult. I no longer enjoyed being in the kitchen. No wonder I’d started avoiding it. Hubby rattled off a list of other things I’d stopped doing or was doing differently.
I felt exhausted just thinking about it. Should I stop treatment? Should I keep going? Would I lose the use of my hands if I continued with chemo? What would life be like if I couldn’t use my hands? If the pain was too much? Was I being a wimp? I’m on a clinical trial, I signed the forms, I committed to it; could I simply stop? What would happen to me if I did stop? Would my cancer flare? Was chemo worth it? Was chemo making things worse? How do I decide whether to continue something that may extend my life, when it seems to be significantly reducing, the quality of the life, I have left? My brain; the whizzing and often unhelpful thought production machine, joined the rave.
I told my oncologists what we had noticed about the difficulty using my hands and how I was questioning whether to stay on the trial; questioning whether more chemo was the best thing for me. They ran a few tests and determined I had lost strength in my hands, especially my left hand. They recommended I defer chemo for a week.
That week came and went with no improvement. I went into a holding pattern for another week. Peripheral neuropathy is the pits and as well as dancing needles it feels like being burnt, a searing. The pain was constant, in my shoulder, my forearm and using my hands made everything worse. More MRIs were ordered. I started to worry about new lesions. Was it peripheral neuropathy? Would it get worse? Was it something else?
Deal or no deal
It came down to one week and the limit of missed weeks allowed when on the trial. I had happily missed a few weeks of treatment to be with Mum during part of her radiotherapy and then missed additional weeks while we waited to see if the pain and hand function would improve. We now had to decide, the medical team, hubby and I, the best next step for the one remaining week; chemo or no chemo. Sounds like deal or no deal except there was no money involved, no windfall or good luck, instead hope or no hope. Bones versus hands.
Hands won. Living rather than life, won. This time. Drs L and A recommended I stop chemo; they didn’t want my hands to get worse and so I was kicked off the trial.
After 21 months, 17 cycles of chemo, virtually weekly blood withdrawal, 100 odd cannula insertions…it was time to give the body a break.
Care as Usual
I went off the trial and on to ‘care as usual’. What I didn’t factor in, was that meant I would no longer be looked after by the trial team, the team that had had my back from the beginning, the team I had come to know, feel safe with, could express my fears and questions to and laugh with. I would be losing the team that had been with me since March 2017 when I first stepped into the Chemo Day Unit and steeled myself for the uncertainty of cancer treatment. Sigh.
Then of course there were the dominos. The other life challenges, falling thick and fast. Not sure what I mean? See my last post, Silent Dominos.
So while still dealing with Mum’s recovery and ‘what next’ (she’s amazing by the way) and my peripheral neuropathy and hand malfunction… along came the next three dominos:
- Changing treatment, care team and feeling cast out into a new uncertain hospital process
- Dad’s Melanoma came back
- My cancer got worse
Who on earth had it in for my family? Who had we unintentionally, unwittingly, annoyed?
All of us with cancer. At the same time.
We didn’t deserve this. No one does. I needed to remind myself:
Cancer doesn’t care who you are or what you have or haven’t done. It’s simply not that choosy.
Posted in Cancer in my family, Chemotherapy for Myeloma, Myeloma Treatment, Pain, peripheral neuropathy, Symptoms and Side Effects Tagged with: Cancer, Chemotherapy, feet, hands, Myeloma, peripheral neuropathy, pins and needles, Side effects, Treatment
A fire has started at the bottom of my ribs. It caught hold in an instant. Creeping upwards, slowly at first but I know what’s coming…it’s picking up pace…then whoosh; my chest, head, face and whole body is washed with heat. Fever type heat, taking over the lymph nodes, my forehead, my entire skin. All my sweat glands are working overtime and can’t compete, they give up. It’s a hot flush or flash and boy is it flashy. It makes its presence known.
Now, I’m hot and wet. Nup. Not that kind. The kind where you feel grubby, like you need a shower and a change of clothes. The night sweats are the worst (well for heat), waking up absolutely drenched, the bed linen soaked and feeling too hot to sleep (if I had any in the first place) …and knowing it will happen again in 10 minutes or an hour (if I’m lucky).
The worst is when you get up, feel good, have a shower, do your makeup, still feel good and then while you are finishing off drying your hair or just as you leave the house or need to head for a train…. whoosh it happens again…. that good feeling a distance memory when frustration, feeling stinky and in need of a second shower takes over. Decisions; go out sweaty or be late and have another shower. Lovely. Stinky wins most of the time. I hate being late. I feel like a woman of the Victorian age as I spray myself with perfume to cover up the body odour.
Mid-life crisis or Climacteric or ?
Speaking of ages and eras, I googled menopause and synonyms came up; maturity, mid-life crisis, climacteric, grand climacteric (no less), matureness, post maturity. Mid-life crisis – what an unhelpful way to talk about menopause. Though finally and slowly, Menopause is being talked about (mind you, we could do with a royal to take up the band wagon and bring it into the bright light). Climacteric is an interesting one, apart from referring to Menopause in medical circles it also denotes a critical period or event and having extreme and far-reaching implications or results. I got a shock when I discovered what some of these far-reaching implications were. Men, this is just one of the places where you come in!
In the week when I decided to research Menopause and Cancer the universe must have been aligning; three different sources of Menopause information happened into my path. The first one; I turned on the radio and heard the presenter say a piece on Menopause was coming up. Perfect timing.
Menopause; a completely natural process involving women’s bodies producing less oestrogen and changing progesterone hormone levels. I’ll come back to the implications of these in part two of this blog. For now, let me tell you about something I heard on the radio that shocked me. The host talked of how she had discovered some high flying, dynamic women at the top of their career had left their jobs due to the difficulty they had experienced in managing the symptoms of menopause.
Shocked doesn’t really explain it. In this day and age? I didn’t doubt that the symptoms must have been horrendous; I was stunned that women were not being adequately supported by medicine or natural means to enable a normal physiological transition to be facilitated so that their lives and work were not impacted in such a significant way. The feminist in me wondered if men would have put up with this state of affairs though to be reasonable, menopause appears to be a learning curve for many of us. Consequently, I was shocked.
I was even more shocked when men joined the discussion and explained their relationships had broken down, divorce had resulted and they described their many regrets about not having understood what the women in their lives were going through during menopause.
Job loss, love loss. OMG. Menopause, you can be incredibly cruel and we need to talk about you, a whole lot more. Now!
Symptoms and Years
In my humble opinion, Menopause symptoms are sh*t: mood swings, hot flushes, night sweats, brain fog, short term memory loss, difficulty in finding words and string sentences together, fatigue, low libido and vaginal dryness. They often start when women are in their 40s and 50s though can start when women are much younger.
Symptoms often last YEARS. Men, please note this. YEARS not weeks or months. Most women (8 out 101) face life impacting menopause symptoms for between 3 and 7 years and for some women, the rest of their lives. On top of this, perimenopause (the few years before menopause starts) usually brings unhelpful, generally unwanted symptoms too including disrupted sleep, headaches and heavy periods.
Ok, not all women experience these symptoms so we must be careful of making assumptions however MOST women do find themselves having to go through yet another massive learning curve about their body. And guys, it would be great if you came along for the educational ride. Not least because men go through a ‘pause’ of sorts too!
For men, it’s called andropause and refers to age-related changes in male hormone levels. Male menopause (not necessarily a helpful term) involves a drop in testosterone production in men who are age 50 or older. It’s often affiliated with hypogonadism. Both conditions involve lowered testosterone levels and similar symptoms.
You’re getting on my wick…
Ha. So we DO have an excuse for being irritable and bitchy. Sort of…well, not really…because it’s not that helpful, is it? Usually most of us just feel worse when we let irritation get the better of us and say or do something we wish we hadn’t said or done. However, when we know hormones may be playing a big part in our mood we can use our awareness to catch ourselves in our irritation and then choose our words and actions carefully, with more sensitivity. Not always easy but likely to result in a better day. It’s also OK to acknowledge we are feeling easily irritated!!
The more we talk about menopause, the more men and women will be able to identify when peri-menopause and menopause start. We can then learn about the options for managing the unhelpful symptoms. Finally, both men and women can then practice and take responsibility for being supportive, tolerant and understanding of each other and ourselves as we go through these changes. Maybe then, we’ll be able to avoid mountains from molehills and the extremes; relationship challenges and break down, negative outcomes for career and lifestyle.
Now imagine dealing with all of this…and cancer…and chemo.
Except, there’s more.
I wish it was just the symptoms listed above and the frequent embarrassment that accompanies them, that many women were dealing with. Going through the menopause can play havoc with women’s sense of identity, sexiness, and value in the world. Western society still predominantly relates to the menopause phase as women becoming old and somewhat invisible rather than being mature, loving and fully living life.
Edna M. Astbury-Ward summed it up well in her 2003 paper
The social construction of menopause as the entry point to old age may represent a challenging and difficult time, because while women may feel young, society tends to perceive them as rather less attractive and less fully functioning. This perception of menopause as a negative milestone is often found only in Western cultures. Medical culture also influences the meanings of middle and old age, particularly for women at the time of approaching menopause.
Cultural bias against ageing and sexuality has contributed to that stereotyping of older women as asexual. In general, the media has not served the ageing female well. Older men are often marketed as sexy, yet older women are rarely seen outside of advertisements for hormone replacement therapy (HRT) and Conti knickers.2
I suspect we need a new, positive and helpful narrative for the completely natural yet often difficult to go through transition that is menopause. The recent menopause cafe phenomenon may be helping with this as a space is provided to discuss menopause and challenge stereotypes.³ Princess Anne, Duchess of Cambridge, Kate; Duchess of Sussex, Meghan – you don’t fancy taking up the band wagon, do you?
Chemo vs Menopause
This was the backdrop to my realisation that chemotherapy and menopause symptoms are eerily very similar. I had been struggling to manage some of the chemo symptoms, particularly the lack of good quality sleep yet they may not have been chemo side effects at all (or at least not current side effects).
My next challenge along this cancer journey was now starkly obvious; to work out how best to support myself over the next year of treatment or to review treatment options, I needed to discern what was a chemo symptom and what was a menopause symptom and then learn how to address each in the best way for me. In the back of my mind it also occurred to me that I may end up going through this whole process twice so getting a handle on it was crucial to enjoying my life and living it to the full. Twice, because my menopause was possibly chemotherapy induced and not following its natural path. I was yet to find out if there was a chance my symptoms would stop then start again once chemotherapy was complete (joy of joys).
There it was, a whirlpool of thoughts swirling around, when in the space of a few days, I turned on the radio at the right time, walked into a foetal medicine building to use the loo only to discover a medical exhibition on menopause and noticed a webinar series advertised on social media involving a week of interviews where experts in menopause shared their pearls of wisdom.
Timing and attention; thank you, Universe.
Part two coming up -– the nuggets from the Menopause experts and my oncologists’ stand-off!
I am going to take a breather now… oh, and another shower.
2 Astbury-Ward, E. (2003) ‘Menopause, sexuality and culture: Is there a universal experience? Sexual and Relationship Therapy’. Journal of the British Association for Sexual and Relationship Therapy. 18(4), 437-445
³ https://www.theguardian.com/society/menopause – Menopause café and challenging stereotypes about aging.
© 2018 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Menopause, Myeloma Treatment, Symptoms and Side Effects Tagged with: Cancer, Chemotherapy, Menopause, Myeloma, Side effects, Treatment
Sick as a dog, thank you Chemo. I am meant to be on top form tomorrow. It’s hubby’s very special birthday and we have a full day of fun planned. Thanks, thanks a million for deciding to be ‘a bad Chemo’ day. Team, my wonderful team, I feel let down. There has been a mistake. You forgot to give me my steroids. I trusted you. I felt safe. I wasn’t safe today. It made a difference, a huge difference. I let myself down too. I forgot to do my own checks. I forgot to ask for my steroids. Consequences. There are always consequences in this Cancer game, some big, some small, some easily remedied, others drastic and most, a right pain in the arse. Consequences, you can rip the rug right out from under my plans. A plan to; feel good, not have to go near a hospital and not have to be in, manage my mood mode because something unexpected and unhelpful has triggered me.
Monday, you didn’t start out a bad day. In fact, you were brilliant until 6pm. I went for my morning blood test, at 8.30, later than usual after a wee welcomed sleep in and a fab, fun, friends packed day, on Sunday. Then, I moseyed to a café near hospital to do Italian language practice before my lesson with the fabulous C from Sardegna. I wandered back to Macmillan to a meeting with my therapist who helped me think about my recent test results, the meaning I was adding and my plans to up the ante on the work front. As usual she was a great help. My pink smoothie, a nutri-bulleted beetroot and green salad was yummy. My call with friend and coach M, was great. Even Chemo went smoothly. Or so I thought.
I got home and started feeling wretched. More wretched than I have in ages after a Chemo day. Even drinking water was difficult. Pain, everywhere. Nausea, constant. Stuck close to the bathroom. The Dom anti-nausea pill wasn’t doing its thing. Sweat, cold, sweat, cold. Aaargh. Why? Why today? This is sh*t. Will I function tomorrow? Hubby’s birthday is so important to me. He has even taken the day off work which is so rare. 10.15pm rolls around and Chemo you bit*h, you have me sitting on the couch, head in hands and between my knees.
Then it dawns on me. I didn’t receive my steroids today. Dexamethasone, I wasn’t given it and I was so busy watching Americans on Prime to distract me from any pain of the cannula going in, that I didn’t do my own checks. Bugger. Now what. Now, I’ll have to telephone the Haematology Registrar on-call and see if I can take my day 16 (tomorrow’s dose) of Dex now. It’s not a great time of day to be taking a steroid, they’ll keep me up all night…but hopefully I’ll feel better. Priority right now: feel better.
Then I realise. Pissed off. If I take the dose I have at home, I’m going to have to go to hospital tomorrow now, the very day I didn’t want to go and normally don’t have to go near it. And on your birthday, darling Man. I don’t know how long it will take, to pick up a steroid on a day I am not usually there. VERY PISSED OFF. My feeling wretched, my having a problem, my having to go into problem solving mode, my having to deal with the impact, accept the consequences, pissed off…it was all so preventable. Annoyed. Sad.
I ring the hospital, ask for the Haematology Reg on call. Operator says she‘ll page him and he’ll call me back very soon, often straight away. I wait. 40 minutes later, I’m still waiting. I’m so sick, I can’t get angry. Hubby calls. The operator is surprised I haven’t heard. She pages him again. He calls back in 5 minutes. No apologies, no explanations (e.g on another call). He runs through the usual questions – have a vomited? Not yet. Do I have a temperature? No, just the sweat, cold combo. Do I have diarreah or constipation? No. Just pain, a lot of pain and nausea that pills don’t kick. Finally, he confirmed I should take the Dex I have at home and go up to hospital for another dose tomorrow.
I take the steroids and Hubby manages to find another stronger anti-nausea tablet amongst my large array of pills in ‘the pill box’ (a large bread bin, works a treat). I cuddle up to Hubby, focus on his breathing and wait for drugs to kick in. By the time we move it’s 1am and despite the steroid, I feel like my body is now desperate for sleep. Good. Happy to oblige. I drag myself upstairs to bed.
Hubby’s birthday day. I feel a whole heap better but very drained. He drives me to hospital. I go to get my steroid and my fear about how the day may unfold starts to be realised. Cancer, you bit*ch, you don’t make life easy. My steroid isn’t ready. I don’t get to drop in, collect it and get out again (my hope). Despite having an email back from my specialist in the morning, acknowledging that a) my Chemo, carfilzomib is hard to tolerate without the steroid and b) containing his request that I be dispensed the steroid today, directly from the Chemo Day Unit (CDU) and c) that the clinical trial nurse should call the CDU nurses to make sure they have the steroid ready for 9.30am – it’s not ready. I even get there about 10.40am, figuring I’d give everyone a bit more time to communicate and prepare.
I explain again, what has happened. The CDU nurses won’t give me the steroid and when they call the Clinical trial nurse for information something is lost in translation so they now think they need a prescription before they can give me anything. I show them my box of Dex with the prescription and dose details AGAIN. I start to get upset. Really upset. I could be waiting for ages for the clinical trial nurse to come to the CDU with a prescription (I’ve been through this before so know how long it can take) and then if I must go to the regular hospital pharmacy for it to be filled, I can write off another hour, it is hideously inefficient.
Tears. Yep they’re coming. I cry. M the wonderful receptionist comes to comfort me and says ‘this is not like you’ and to find out what’s going on. I fleetingly wonder ‘what is like me, when I’m here?’ I feel bad because I know the team have had someone die today and one of the head nurses has had to race off and manage that. My tears over impacting my day with my hubby seem trivial in comparison and yet not, nothing is trivial in this Cancer journey. It’s all bearable for me most of the time, yet it is all sh*t too. I cry some more.
Nurse L comes to my rescue. She looked after me all last year and I missed her when she left to do a stint in private practice. She asks what is going on, I tell her, show her my empty box of Dex and say I just need my day 16 dose because I had to take it last night after not receiving the steroids yesterday. I don’t say which Nurse forgot to give me the steroid. Nurses are human. We all make mistakes. She is usually so so good so must have had an ‘off day’. AND, it was my mistake too. It’s not really fair to hand all responsibility and agency of my care over to a Nurse. After all, I bang on about being the agent in your own health and treatment for as long as you possibly can. Nurse L goes and gets the Dex dose immediately and finally I get to leave.
Thank you M and L. You saved my day. I know my Clinician plans to talk to the nurses about how the steroid was missed but I don’t worry about that now. I know mistakes happen yet between us, the Nurses and I are usually so good at going through a checklist each time. It’s a shame it went wrong.
On this day of all days.
Psychology Tips – Working with your and others’ mistakes
Admitting mistakes can be hard. Research shows there are links between our beliefs about whether we can change our behaviour or whether our personality is fixed and if mistakes and admitting mistakes are perceived threats.1 Cognitive Scientist, Art Markman summarised the research results2 and explains when you believe that your behaviour can change, you are more likely to be willing to admit responsibility. You recognise that by admitting what you have done wrong, you can work to make it better, to grow and so you are not threatened or are less threatened by admitting mistakes.
People who do not believe that they can change, can be stressed by admitting their mistakes, because they believe that those mistakes say something fundamental about who they are as a person. Understanding that people see their own mistakes as a threat, and have different beliefs about their own and possibly others’ ability to change, can help us to remember to avoid showing unhelpful frustration and anger when managing mistakes. We can all change our behaviour. We can all learn from our mistakes. We can all repair and improve relationships. It can take some people longer than others, to recognise that change and growth is possible, especially when their starting point is one of: I and others have fixed personalities and mistakes are flaws.
It’s easy to get frustrated with others’ mistakes when we feel something is unfair (it can be completely justified) but does it help the situation to show the frustration? A compassionate response will get you more powerful results and responding with anger and frustration negatively impacts loyalty3,4. In my case, I want the Nurses to like treating me. I want them to feel we are on the same team, to feel loyal, committed. Showing my frustration and upset was normal, human, yet unlikely to have been the optimal way to have managed the situation. Remembering that frustration, anger and stress raise heart rates, make it harder to think, mean that when recognising frustration, a good first step is to pause, be mindful, and then choose a more powerful response. One of clear communication, compassion, kindness, empathy, forgiveness. This is more likely to invoke compassion, kindness and loyalty in return.
Recognise too that anger, frustration and upset at mistakes of yours and others are often underpinned and exacerbated by worry and a catastrophising thinking style. I was worrying that my need to go to hospital on Hubby’s birthday day would ruin our day. Ruin his day. Eventually I managed to realise an unhelpful worry and thinking style was probably in play and ask myself, was my hospital visit really the worst thing in the world? Were my thoughts true, would our day really be ruined? How much time in our day did it take up really? Was it more likely that hubby was happy to help and had enjoyed his rare time alone, in a café, doing things he wanted to do, without having to be at work, while I was at hospital? Regaining perspective enabled me to let my frustration and upset go. An hour later I noticed I was laughing at something Hubby said and our day was going well. Yes, it meant we came home earlier than expected because I was really tired yet we relaxed together and the evening was a good one. I could easily have been very tired anyway. It’s not unusual for the day after Chemo.
1 Who accepts responsibility for their transgressions? Schumann, K and Dweck, CS. Who accepts responsibility for their transgressions? Pers Soc Psychol Bull. 2014 Dec;40(12):1598-610. doi: 10.1177/0146167214552789
2 Markman, A. (2014) What makes some of us own our mistakes and not others?
(2009) Witnessing excellence in action: the ‘other-praising’ emotions of elevation, gratitude, and admiration, The Journal of Positive Psychology, 4:2, 105-127
4 See Adam Grant, Psychologist and author of Give and take: A revolutionary approach to success. See also work by Emma Seppala, Center for Compassion and Altruism Research and Education.
Shadow and Dex pictures by Me
Dog Photo by Matthew Henry on Unsplash
Shattered plate Photo by chuttersnap on Unsplash
Failed it Photo by Estée Janssens on Unsplash
© 2018 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Myeloma Treatment, Psychology for Cancer, Symptoms and Side Effects Tagged with: Cancer, Carfilzomib, Compassion, Consequences, Dexamethazone, Frustration, Mindfulness, Mistake, Mistakes, Myeloma, Nausea, Psychology, Sick, Steroids, Sweats, Tears, Worry
Dr L turned to his colleague and said, ‘for someone with Myeloma, Janine’s immune system is a Schwarzenegger’. Hey Arnie, you are now a metaphor for my health status. Who’d have thought?! It sounds so positive and I am very grateful that my precious physical self is coping so well with the toxicity of Chemo. I notice too that I get a little hung up on the ‘for someone with Myeloma’ phrase though more about that in the next post. Now, I want to talk about my relationship with my body. It has become a bit confused.
Can I share a secret? I liked it when cancer, chemo and a diet change caused me to lose weight. I like being closer to 60kg than 70kg. I like how slim and less pear shaped my legs look. I like being size 10 and for a few weeks, size 8. All my life, I have valued being slim, strived for it. I’m not obsessive. I don’t over exercise or starve myself or think about it constantly. Even when I put on two stone from IVF treatment: I hated it but didn’t panic. The weight had context. Once we stopped IVF treatments, I lost a stone quickly and then worked on chipping away at the rest. I like cake. I binge occasionally (or did before this new eating regime). Who doesn’t when there is a pack of dark chocolate hob nobs in the house and the hormones are taking over? I would say I’m weight and health conscious with no extremes.
I’ve never liked my arms: they’re too big. Well, apart from the time I sanded every spindle on a stair case by hand: my arms were toned, like Madonna’s or Geri Halliwell’s. I thought my arms looked great after that. It didn’t last long. Finding tops and elegant shirts to fit my arms has always been a hassle. The welcomed side effect from cancer, chemo and clean eating has been the slightly thinner arms and shirts fitting, for once. I don’t really want to give that up yet…
I find myself struggling. I’m in a tussle inside my head. Too much weight and muscle loss is not healthy, not helpful and goes against Dr L’s advice. He explained that he had noticed that people with Myeloma who keep up with the gym and have some muscle reserve seem to manage the chemo better. I do want to live as long and as well as I can. Yet I find myself loving my new size. I bought a pair of boyfriend jeans a few months into treatment, laughing with a wave of pleasure when I discovered I could fit into a size 10 only to find they slipped off a month later and I’d lost even more weight. Now what do I wear? Nothing in my wardrobe fits!!
At that point, 61kg, it did get a bit worrying. My face was looking drawn. My rib cage and spinal vertebrae were a too visible. I promised Dr L that I wouldn’t let my weight fall further. I expanded my food repertoire slightly (good quality bacon, goats cheese, sourdough toast occasionally) and started the weight training.
Back at the gym, I felt good and waves of relief from feeling stronger. I’d become so weak. I was asking hubby to open jars and water bottles for me and lift anything. This does not fit with my independent and equality philosophy. Yet, I dislike how quickly my leg and arm muscles grow. When my weight started to rise slowly I would find it hard to like what I saw in the mirror. I know it may seem silly in others’ minds. Intellectually, I know I look ‘normal’, ‘healthy’ and would still look heathy even if I did put on weight (I’m fortunate to be tall). Except, somehow it feels like a tug of war in my brain – Janine, don’t put on more bulk, you look good as you are (now size 10-12) versus Janine, you need more muscle and strength to manage Chemo effectively, get yourself to the gym.
For more years than I care to think about, I have gone to buy clothes and come back disillusioned when I have needed that elusive size 13 or 15. It seems crazy to have the same problem at a lower size (now 9 or 11) and with the added complication of my size constantly changing. I can’t afford and wouldn’t want to invest in new sets of clothing every few months yet as my weight goes up and down on chemo, what can I do? Frustrating. I hate being uncomfortable in clothes. I really dislike ill-fitting clothes that don’t help me feel good and enhance how I look in the world. Too loose is as bad as too tight!
Even more annoying, last summer, before diagnosis, I bought some new clothes after ‘making do’ for a few years. Now they are sitting in the wardrobe, barely used as they are far too big. I am in the maintenance phase of treatment, with 3 days rather than six days a month of Chemo and my weight is climbing and fast. I’m 67kg today. Maybe I’ll need those ‘larger’ clothes again in a couple of months. Except, I don’t really want to get any bigger or go back to the size of those clothes again. The 6 days of steroids each month may have something to say about that.
67kg. Nothing to worry about. Yet, I don’t feel good about it. I am beginning to worry that a steroid induced, sharp trajectory up of weight, will set in and hang around for the duration of treatment. There are 16 months to go! That’s a lot of weight gain. That makes me feel sick.
It is also motivating. I’m back on the high veg and protein regime. A few bits of non-clean eating crept in as I celebrated getting through the first 48 (see previous blog) and 9 months of treatment. Then I let the goodies stay, it was Christmas after all. Then I felt sorry for myself with the arrival of two viruses back to back. January came and went, and it’s always the toughest month in UK for me. It’s so often grey, cold, hibernation inducing and all I want to do is eat comfort food!
Oh well, not having the clothes I would like, in the bigger scheme of things, is insignificant really. If I hover around the 65kg mark and I am made of tiny Arnie style muscles, that will be good enough. Viruses and January blues are gone. The revolution is here. February has arrived.
I’m back on track with preventing my body from being a perfect host for cancer. I celebrate a new food focus: FISH. It is easy to do: I am languishing on the beautiful beaches of ANTIGUA for a much-needed holiday. Fresh snapper, mahi and octopus are on the menu. The company is great (hubby and besties), the sun is high, the sea is warm and the forecast is rosy. No time for weight tussles now: The bikini is out and about!
Antigua seascape: Photo by me
Legs and kettle bell: Photo by Maria Fernanda Gonzalez on Unsplash
Clothes hangers: Photo by Christian Fregnan on Unsplash
Shirt and Jeans: Photo by Lyndsey Marie on Unsplash
Muscles: Photo by Alex Boyd on Unsplash
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Finance and Cost, Psychology for Cancer Tagged with: Cancer, Chemotherapy, clothes, muscles, Myeloma, weight
Did I change career over the last month of 2017, become a lead actor in a thriller? This thing keeps creeping up from behind me, above me, beside me, from below, yelling BOO! It sends my cortisol levels sky high, makes my heart pound and brain race. I’ll be tidying, reading, sitting, walking down the street, thinking about something or standing in a queue, essentially minding my own business, when WHAAAHHH! There it is.
I recognise it straight away. Sometimes, I even feel it sneaking up on me yet it still scares the living daylights out of me. It’s a shape shifter, a dark cloud and an amour piercing arrow. Either way it makes me gasp, scream, crash, sleep, feel defunct. It pulls the ground out from underneath me, leaves me doubting the paths taken and decisions made that previously seemed acutely clear and necessary. It’s an expert protagonist in this production. It doesn’t take direction. It’s a master tease, dangling hope and snatching it away, reminding me, it’s in control. I’m the newbie on set with no Daniel Day Lewis, Dame Maggie Smith or Christian Bale style mentor to guide me. In the meantime, it picks another corner to hide in and I jump through the roof with the next BOO!
It’s not cancer; it’s fatigue.
Fatigue and Fear
Fatigue, is really getting to me. I don’t get enough sleep. I wake every two hours.
I’m also scared. Though I do know I’m alive!
I’m scared of dying young. I’m scared of missing out. I’m scared of making a poor decision; making my condition worse or accelerating its progress. I’m scared of being a burden. I’m scared of not being enough for my husband, of dragging his life down (all the active plans we had). I’m scared he’ll leave me. I’m scared I’ll ask him to leave me, to go off and find someone else, to have a life with more fun, that doesn’t involve or revolve around a wife living with terminal illness. I’m scared that I don’t and won’t again resemble my sense of who I am; an active, full of life, adventurous person who stands on mountains, travels everywhere, is strong, independent, sensual. I’m plain scared.
Fatigue and fear. I feel them. I get paralysed by them. I think about them. And, yep you know it by now (if you have read my earlier blogs)..…
That’s OK. It’s OK that fatigue and fear do that.
It’s natural. I am living with cancer and have had a gazillion sessions of Chemo during 2017, numerous biopsies, scans, endless blood tests, new challenging experiences and learnt a new language of medical intervention. However, just because I face big challenges or can find myself embroiled in fatigue and fear, doesn’t mean I must let these factors take over this whole blog.
I can do a bit of my own shapeshifting, respond rather than react, slowly little by little unlock the paralysis and pull on a cloak of ‘sitting in all the good things’. I can start now. I’m not ignoring fatigue and fear. I’m not denying their existence. I am denying them their take over plans. I am choosing to focus on something else right now.
Today, this blog is going to be about a huge THANK YOU and more Good News!
Belated Merry Christmas and / or Happy Holidays and Happy Happy New Year everyone. Thank you ALL, for reading my blog, for subscribing, for commenting, for sharing it with others who may have an interest in the journey, an interest in what has worked for me so far in managing cancer or an interest in the psychology tips and experience I have incorporated.
Thank you too, for all the wonderful cards, calls, skype time, meals together, moments and best wishes my hubby and I have received over the holidays. They are so appreciated. Every single one.
I firmly believe that all your support and encouragement has contributed to my good news. I have felt loved, helped, contained, hopeful and normal at times when things were far from normal. THANK YOU from the bottom, to the top, of my heart.
THE GOOD NEWS.
My December 2017 results are great. In addition to those mentioned in the previous blog, titled 48, my recent pet scan, bone marrow biopsy and MRI have overall been extremely positive. Of the four lesions I was diagnosed with, only ONE near L5 in my lower back took up glucose during the pet scan, indicating active myeloma. Even this lesion took up significantly LESS glucose than it has done in previous scans. Yeah Baby! How good is that?!
I told those tumours they were wasting their time hanging about and I am taking this as evidence that they have been listening and reassessing their landing page! It is wonderful to read the line in the report that said ‘There are no obvious focal uptake abnormalities in the brain’!! Let’s hope no un-obvious ones decide to make an uninvited guest appearance. They’d be about as welcome as a Harvey Weinstein type right now!
There’s more. The bone marrow biopsy did not show any active Myeloma in my blood or bone and, wait for it…my MRI did not show evidence of any new lesion/tumour. Yee Ha!
I do have one caveat; I have some mild degenerative disc disease and loss of height and hydration between vertebrae in my spine; my back is looking a bit older than my years. It is unlikely that I can particularly do anything to repair damage. I can exercise and ensure by back remains strong, doesn’t antagonise the nerves around L5 and otherwise prevents my degeneration from becoming worse unnecessarily. I will check with the physio about what else, if anything, may be possible. It was also wonderful to read ‘the spinal cord returns a normal signal and the brainstem structure is normal’.
Being pragmatic, I am remembering that Myeloma is tricky. It will come back. It can also be a bit lazy and not show up at times in these results. It can take a rest or be working out how to manifest itself in a new way in my blood and bone. HOWEVER, TODAY…
I’m looking on the bright side of life! (How many of you began singing this line? I can’t help myself)
A helpful position to launch from; I start 18 more months of Chemo this week – the maintenance phase on the clinical trial. Let’s see what this brings.
This is infinitely easier to do with wonderful friends, family, readers, well wishes and my so far ‘beyond amazing’, hubby. I appreciate all of you. I really do.
BRING ON 2018.
Images; Hands by M & T. Me (February) by Dad. Me (December) by Me. Thank you image by Tumiso @ Creative Commons (free for commercial use, no attribution required);
© 2018 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Psychology for Cancer, Results Tagged with: Biopsy, Cancer, Fatigue, Good News, MRI, Pet Scan, Results, Thank you