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