Sunday 1st September “One day at a time” I said to myself five days ago when I was diagnosed with oesophageal cancer.
Of course it was a shock - one day at a time is all I (or any of us) have. It’s all we are asked to cope with. Five days have already passed and each has been different. Mostly I have been gratefully aware of being held in the loving embrace of God. But there have been other days of overwhelm, exhaustion and anxiety. Yesterday was one of those. Today I feel almost “normal” with reasonable energy. I was able to enjoy lunch (soft food only!) out with my beautiful dearest friend Anthea. She is my rock of support. We both know it is just as hard for her as it is for me - but in different ways.
We were supposed to be heading off for a two week holiday in Queensland this week, to see family and friends and to celebrate 25 years of sharing a house - and life - together. We weren’t planning this kind of “celebration!”
For my own processing and record I hope to keep track of this journey here on my Blog. I write for myself but if others read it that’s fine. I don’t promise to write every day, though I’d like to, even if it’s just a few lines. Already I’m noticing more intensely things like the singing of a thrush outside the window and the beautifully colourful garden cared by by council staff as we walked after lunch.
Monday 2nd September. This sure is a roller coaster. I've been very shaky all day. However - Had a lovely time with a friend here in the village who knows how to listen! Went out with Anthea for a beach walk and a few bits of grocery shopping. Feeling quite overwhelmed with so many lovely messages of support and how to keep up with any kind of response. The analogy of a swan sailing calmly on top of the water while paddling furiously underneath comes to mind.
Tuesday 3rd September. Today was the day of my CT body scan. Grateful for: *Having this facility relatively close to home. (North Shore Hospital). *A lovely nurse Sarah and skilled staff. *Then lunch with Anthea at one of our local cafes and home *to find flowers at our door. Won’t hear results for a week or more. Feeling exhausted now, but peaceful.
Wednesday 4th September. Today is the day we were supposed to be flying over to Queensland. There is a mix of grief at missing our planned holiday, and relief that we are not away from home and all the medical facilities. As always I/we are trusting God’s timing in all of this. I’m finding waiting to hear the results of the scan and plans for treatment very hard. Knowing is easier than not knowing with all the room for imagining. Positive things today: *My niece Nicky calling in. She has been through the serious illness and death of several friends and family members - so she is a very calm and balanced support. *An evening walk round the grounds and meeting Von. *Tony (our village EV cab driver) expressing his concern and saying he would prioritise hospital trips when necessary. *Eating mashed potato and veges for tea!
Thursday 5th September. The beach and the ocean are my special, restorative places. This morning I went for a beach walk in the spring sunshine. In a recent Richard Rohr daily meditation this verse from a hymn was quoted: “Have you ever stood at the ocean with a white foam at your feet, felt the endless thundering motion? Then I say you have seen Jesus my Lord.” Perhaps the language isn’t quite how I’d express it but the sentiment is the same. Creation speaks of God in ways that words often can’t.
The other big thing today was getting a phone call to say I have a specialist appointment next Wednesday. Presumably the specialist is an oncologist. I will receive details by email. This is a relief. Things are moving fast. As well as relief there is a new wave of anxiety - what will be revealed?
Friday 6th September. I’m so grateful for God’s timing. Anthea went to Yoga this morning. I didn’t have the energy to go today. So I was home when Nicky’s husband Matt phoned. Matt is a Vet so knows a lot about medical things. He told me several optimistic things after reading the report from the initial gastroscopy. It really gave me a boost. Then Ant came home having had a very healing time at Yoga. We have a beautiful Yoga teacher who exudes calm and love. So we both had a lift to our spirits today.
This afternoon I got the offical written appointment details. The specialist is an upper GI surgeon so it looks as if surgery will be part of what happens next. After Matt’s phone call I feel much less intimidated about that! Yes wonderful timing of things today. Very grateful.
Saturday 7th September. One highlight today was getting to Spotlight (driven by Anthea!) and stocking up on knitting wool. Sometimes seemingly small things feel like an achievement! Knitting is a useful hobby when you can’t be very active. I think of mum teaching me to knit when I was away from school with bronchitis! Thanks mum!
Another delight was a short walk round the grounds in the evening air, hearing the birds who seem to sing even more beautifully at this time of day!
Sunday 8th September
A tough day. Just watched the PBC church service on YouTube - theme of light and darkness both created good (Geneses 1). Certainly a day of darkness and light for Anthea and me. Darkness as we face into the future and light that we can honestly both talk about our fears and feelings. Light when two very lovely long term friends visited, darkness when recounting the whole story of my cancer making it all seem even more real. These friends (Chris and Margaret) supported us through my cerebral aneurysm 28 years ago. Now here we are again…
Monday 9th September. A lovely day with good energy. We went out in the morning to buy a special cushion to enable Anthea to sit more comfortably which she is having to do a lot driving me round etc. Then on to buy an outdoor reclining chair which she is giving me for my birthday! I’m calling it my “recovery chair”. It fits on our balcony which we will lovely in nice spring weather.
Tuesday 10th September. Felt a bit low this morning after waking about 5am. Early hours of the morning are often the worst time of day! I’m sure I’m not alone in experiencing that. However, I’ve been surrounded by so much love and compassion today - some staff here in the village genuinely caring. Visits from two special people. Thoughtful food from another. Flowers from two others. And of course ongoing beautiful messages and prayers. I am so fortunate to be carried on such waves of love.
Tomorrow is a big day. This is the first consultation with a specialist who hopefully will tell me exactly what to expect in the days ahead.
Wednesday 11th September. Saw a very compassionate surgeon today. But surgery is not the answer. I see an oncologist tomorrow.
Thursday 12th September. My 79th birthday. This is definitely my last earthly birthday. Saw a lovely, compassionate oncologist who agrees that hospice care is the best choice for the time I have left. Chemotherapy would only be a short reprieve and not a pleasant one. Relief that there are no more trips to hospital. Our local hospice is excellent and I have some connections with them already. Anthea and I will travel this path together with God’s grace and strength and the love and support of so many.
Friday 13th September. A mix of feelings today. Relief that we are beyond the “ not knowing” stage and have a plan which feels the most supportive and gentle. Overwhelm at the streams of beautiful messages flowing in. I know people don’t expect replies but I appreciate each and every person and their thoughtful and genuine words. A sense of reality is kicking in as I experience a bit more “discomfort” at the sites of the cancer. I wouldn’t yet call it pain (though the oncologist has prescribed morphine already to have on hand). But the subtle reminders that things are developing are sobering. Even as I grieve so many losses of life “as it used to be”, I simultaneously look forward with anticipation to Life beyond all I can imagine here!
Saturday 14th September, a very unexpected night and day. Intense pain, ambulance call about 11pm. Pain somewhat controlled. Hospice care from now on. On Morphine.
Sunday 15th September. I forgot to update the last entry. It was a bit garbled! Just after writing on Friday evening that I was surprised I had already been prescribed morphine, I found out! The two ambulance women were great and stayed for over an hour getting pain under control. The rest of Saturday is a blur. But now it’s Sunday. A lovely Harbour Hospice nurse came this morning for an hour and a half! Anthea and I both feel very reassured that every detail of care will be provided. I’m even hopeful that I might be “up and about” a bit as the symptoms and pain management are steadily adjusted. Right now I’m sitting in the chair beside my bed, in the sun, having a cup of tea! It is only three weeks since I was diagnosed. So much has happened - and so many very compassionate specialists, ambulance staff, hospice nurse… I am very grateful! I am sad, though, that so many people couldn’t have afforded to pay for a private gastroscopy, which was the turning point for me. There must be hundreds, if not thousands, of people here in NZ, who live in extreme pain, or die, because of the state of our health system. It shouldn’t be this way.
Monday 16th September. Another very full day. It is very busy and demanding when time is (potentially) so short! A hospice doctor and nurse came this morning. Another excellent visit with every base covered re pain control, reviewing existing medication and checking out various end of life preferences. All done with such compassion and no sense of hurry. We both feel supported in every way. I’m only going to be open to having very few visitors - mostly those people already know. I’m not in pain and at present feel reasonably able to focus on details of transferring to Anthea the various things I have been “in charge of” till now. (Well, let’s say we achieved one of these things today!)
Tuesday 17th September. I know I’m repeating myself but I never imagined how demanding it would be to deal with all the appointments now being made for legal issues and passing things on to Anthea. It’s just as hard to keep my/our diaries sorted as it was when we were working. I’m more able in the morning to think straight so that makes it harder too. However, today everyone I’ve contacted about things I need help with has been very quick say they will come as soon as possible.
One highlight today was our village taxi driver, Tony, delivering flowers to the door and I was sitting up in the lounge so opened the door to him. It was lovely to see him and get a warm hug.
Just lying in bed and looking at the green spring growth on a big tree outside the window - washed with rain, tousled by the wind and then illuminated by the sun is a delight and blessing.
Wednesday 18th September. Peace perfect peace! It’s early evening on a very busy and noisy day. The workmen have finally gone home. The day began with discovering that a major water pipe under our block had burst. Flood waters pouring across the car parks in front of the building. Water in some ground floor apartments. (I’m so grateful we don’t live on the ground floor, but so sorry for those who do.) the water has been turned off all day (and still is). Staff here have been wonderful supplying water to drink and a bucket full for a flush. This morning I filled in my Advance Care Plan discussing the points raised with Anthea. Then at 12noon a Hospice nurse arrived - just checking, no major event. Nicky arrived half an hour later which was good as she will relate closely with Hospice as the backup for Anthea as EPOA. While they were here my GP rang! Also useful as nurse could talk with him about requesting some extra meds. Just after 2pm we were back to “just us” - both needing a rest! Everyone is so efficient and helpful, I’m almost embarrassed!
The silence after the noise of men drilling concrete all day is bliss. I guess it’s one of those things where we have more appreciation for light after total darkness or warmth after extreme cold. I’m also appreciating sleeping through the night while I’m on morphine! I haven’t done that for a very long time! As the hospice nurse said “There’s an up side to everything!” I’m happy to say I am free of pain on what I’m assured is a very low dose. “ Plenty of room to increase the dose when you need it - and you will!” Ah well - “one day at a time”.
Thursday 19th September. After a rather rocky start to the day - least said the better! It was a good day. A lovely, relaxed visit with one of my oldest friends. Lots of reminiscing and laughter as well as grief and a few tears. So special though to have time for this kind of goodbye. A deep rest early afternoon - very welcome. A surprising card and letter from someone who was a pupil in one of my Hillcrest School classes in Nigeria. The grapevine is obviously spreading far and wide for her to know what’s up for me and find my address here. By this evening I was experiencing a bit more pain. I rang the 24 hr hospice nurse line and discussed best option for overnight and then scheduled a phone call in the morning, Being under Hospice care is so reassuring!
Friday 20th September. Here’s how the day went: 9am Anthea and I thought we’d deal with one of our legal/business issues before I had a visitor at 10.00. After a long and very frustrating time trying to deal with a certain business online and on phone we completed the task at 10.20. Fortunately the visitor was late. 10.30-11.15 a very lovely and emotional time with my beautiful friend. Hospice nurse was due at 11.30. Two nurses came (one a new person learning the ropes). As usual they were thorough, excellent listeners, understanding that probably some medications needs adjusting. We had plenty of laughs as well. They left at 12.40. Time for me to catch up on various emails, texts, messages etc and have some delicious carrot soup before another very special person arrived at 1.30. (I’ve stopped naming who the friends are but if it’s you, you’ll know!) We reminisced about all the ways our lives have been woven together over many years - personally, professionally and supporting each other through some really big crises on each side. What a joy to look back like this and share the memories. At 2.30 a phone call from Hospice confirmed new medication and script sent to Pharmacy. Somewhere in the midst of the afternoon a Lab technician arrived to take a blood test. 3pm was the first time since 9am to turn the phone off and settle in for a rest. (Of course I have been in bed all day.) I’m recording all this with absolutely no regrets. Everything (except online/phone dealings) has been with “people interactions” I’m so grateful to have had. But just a glimpse of the reality of life with serious illness and a short time frame. And just as a PS some flooding due to a burst water pipe means our lifts will be out of action for a few weeks! There are some advantages to staying in bed!
Saturday 21st September. A lovely day. The sun shone. One of my nephews who had come up from Dunedin, visited. We shared many great memories. Some memories he shared of times with me, I had forgotten but it was heartwarming to see through his eyes how important an Aunty can be! In more recent years we’ve shared a lot as adult to adult. Lovely to have a true friendship with a nephew. (When I think about it I have genuine friendships with most of my nephews and nieces.) what a privilege!
Later in the morning seven people from the Ponsonby Church music group came to sing to/for me. I asked them to sing one of my favourite hymns: “Oh the Deep, Deep Love of Jesus”, and a beautiful waiata:
Te Aroha, Te whakapono, Me te rangimarie, Tatou Tatou e. (Love, hope, peace for us all.) it was a truly beautiful time with more singing than my two requests! I thought having the music group sing, especially benediction we sing every Sunday in church, would have me in tears (tissues handy!) but instead I felt deep joy! Emotions are funny things! I love these people. It was so good give each one a deep hug. They represented the whole church community which I’ve been part of for 38years,
The afternoon was quiet and restful. Back to bed and the view of my favourite tree out the window with sun and breeze. rustling the leaves playfully.
PS Very good news that the lifts are working again!! We were warned it could be weeks.
Sunday 22 September, Another lovely day. Anthea drove me to our special seat that overlooks the beach - my special place! Then watched church on Zoom - a special time always and today very moving to see everyone adding a tassel to a beautiful blanket made for me. One visitor late morning - someone I’ve known since we both went to West Africa with SIM in the 1970’s. 2pm my lovely friend and pastor came to begin funeral planning. She is so good at wearing both friend and pastor hats at appropriate times.
Then time to rest. So a lovely day…but… I’ve had to call hospice twice today to discuss pain relief. In the end we both agreed that I’m “doing too much” and that increases my pain level. Part of “doing too much” is keeping up with the constant stream of people “ checking in” by text, messenger, email etc. I love you all and appreciate deeply the compassion in all your enquiries. However, a request from me: Please would you treat what you read here as your daily check in without further enquiries. Thanks in advance!
Social media is a great way to stay in touch but somehow I need to stem the flow!
Monday 23 September. Another good day! The Hospice motto is “making every day a good day”. Mind you it did begin with a Hospice nurse coming to carry out a necessary procedure (nurses can guess, for the rest of you it would be “tmi”.) Then one of my lovely nieces arrived for one of those very good conversations and helpful connections, plus photos of her family including a gorgeous grandson, Remy.
During the afternoon I felt “almost normally healthy” . Anthea and I chatted and relaxed together. Weird! Is this all a dream? Do I really have terminal cancer? Of course I know it isn’t a dream but it is strange to be living in this world but no longer fully part of it. I think Jesus said something about “being in the world and not of it”. Maybe that’s what I feel like.
Well from medical procedures to some vaguely theological thoughts it’s time for me to switch off and watch TV for a bit if we can find anything worth watching!
Tuesday 24th September. I’ve heard it said that you don’t know how you’ll handle death until it happens. True. Not that I’ve spent much time thinking about death - my death in particular- but it’s true that you can’t guess in advance how you will handle the reality. I’m surprised at my reactions although looking back I can see how my life has prepared me for how I feel now. A simple three phrase “mantra” that I came across some years ago sums up what I try to remember and live out: “Let everything go, let everything be as it is and turn towards what gives you peace.” Even more simply: Let go, Let be, Turn towards”. If theological language helps then: Surrender, Acceptance, Focus. I could turn this into an article or a sermon! But this is about me and my death. There’s a lot of letting go. Anthea and I find ourselves saying “this is probably the last time we will...” or I realise that I haven’t driven my car for a week and realise I won’t drive again. Or even the reality that I will never eat a roast dinner, or plan our next holiday. Surrender, surrender, surrender. Truly accept how it is. I can’t change it so why use energy resisting. Instead of resistance turn toward peace. This is different for every person. What brings me peace is turning toward the welcoming arms of love - God’s love. So as I face the reality of death I find myself letting go with surprising ease and accepting that what awaits me is an even greater experience of Love.
Of course I find myself sad and sometimes a bit wishful/wistful. Today I felt joyful as my dear best ever friend (Anthea in case you haven’t guessed!) took me to get my haircut and then drive to a couple of favourite places here in beautiful Orewa. I even let my inner child have a swing! The saddest part of this dying process so far is saying goodbye to the people I love. I’ve felt physically well today - weak, but pain free and able to enjoy life - just as it is. In the days to come I might have some different reactions but on this “one day at a time” journey, today I feel joyful. (And just between you and me, I know I will meet up with those I love again one day in the boundary-less Love of God where we will all be one.)
Wednesday 25th September. A rich and beautiful day. Rich with two visitors. One of them lent me a sun umbrella to shade my special chair. Rich with the free care from regular Hospice nurse visits. They do much more than the medical stuff. They offer compassionate listening and never seem to be in a rush. Beautiful with sunshine, birdsong and spring green trees. Beautiful with messages from people who make clear that they don’t expect an answer. I still love the messages and appreciate people understanding my previous “stem the tide” message. One particularly heartwarming message from a young person. We never know how much we matter across the generations.
All in all a beautifully full but relaxed day.
Thursday 26th September. An exhausting but very helpful day. Our financial advisor and offsider came this morning to discuss disbursement of my investments. We have worked with them for many years and built up tremendous trust and gratitude for their expertise. We are innocents when it comes to money! They were wonderful in making the complex simple today. But it took a lot of concentration and after an hour and a half we were both exhausted. (Rutherford Rede Ltd in case you are interested). However they have made it so much easier to know how to meet my lawyer tomorrow with clarity about what I’m changing in my will. This afternoon I enjoyed some time in what I now call my “peace chair” with my love and prayers blanket covering me and the new sun umbrella shading it. (Photo on Facebook). Then my pain went up a few too many notches and I had to return to bed after a reassuring phone call and advice from hospice nurse. Ant and I are both trying to stay awake long enough to get a good night’s sleep. Sounds contradictory but if I go to bed by 7 I’ll be wide awake by3!!
Friday 27th September. Exactly a month since the day of my diagnosis! Synchronistically, today we met with my lawyer and completed the list of business, legal, banking etc stuff. It’s amazing how much there is to do. I have a lovely young woman lawyer who was efficient and compassionate. We are now looking forward to a quiet weekend together. We need to adjust to living each day to the full while I still have reasonable energy. I am quite weak and shaky but in other ways feel pretty good. In fact most people are surprised “seeing me look so well”. I feel almost abashed, as if I’m not living up (down?) to their expectations of what someone having terminal cancer should look like!
Saturday 28th September. A beautiful day. The sun was shining. No hospice nurse visits (much as I am grateful for them!) No other pressing matters to attend to. We drove to the beach and found one last car park where we had a perfect sea view! (See facebook photos. I’ve decided not to insert photos in this daily review. But easy to share them on fb if we are a fb friends.) We had stopped at one of our favourite cafes and Anthea went in to get coffee and some nice soft lemon roll for me and a little pie for her. The lovely Asian couple who run this cafe have become real friends. When Anthea told them about me today they were so upset and concerned and wouldn’t let her pay for anything. When we got home I had some time in my Peace chair on the balcony. I’ve been resting in bed all afternoon, so grateful for a full day of “some of my favourite things” with my favourite person!
Sunday 29th September . A peaceful day. At home quietly today. Nice! We seem to have reached a sort of plateau where I am quietly waiting for whatever comes next. I remember years ago thinking that death is really another kind of birth. If so, then this is a stage of “pregnancy” before the new life emerges. And like pregnancy there are stages. Not that I’ve ever been pregnant but I know many women who have! Some stages can be awful with morning sickness, others can be glowing with well being. The last stage, so several friends have told me, is feeling “I can’t do this any more!” But the body knows what it has to do. If there are parallels with the “pregnancy of dying” then I’m somewhere in the central stage. Not exactly “glowing with wellbeing” but certainly past the first stage of shock and flurry and not yet in the final stage of surrendering to what “the body knows how to do”. The strange thing about this current stage is that I have no idea how long it will last before the final transition. So I continue to take “one day at a time” with gratitude for being pain-free and at peace. I’m pretty sure this stage is harder for my beloved Anthea than it is for me. I face a welcome new chapter of Life. She faces a much harder chapter, though I know she will travel it with courage and the love of all who surround her.
Monday 30th September. A poignantly lovely day today. I’m going to stick to just one incident. A “special” niece (age 45) who lives in Australia sent a voice message via a niece here who played it for me. As accurately as I can remember she said “I’m not ready to let Aunty Sheila go. I want to go to a hospital and let them take one of my kidneys, put it in a jar and screw the top tight. Then it can be sent to New Zealand and given to her so she gets better and we have more time.” She is special indeed. Uniquely special.
Tuesday 1 October. A happily exhausting day. The first day of having completed all business affairs (as far as I can tell!) Needing to find my energy level for this stage. One thing I’m delighting in is having organised things so I can set in motion now, what usually waits until after death and probate etc. That means I can enjoy the pleasure of giving, and sometimes hear what those gifts make possible for the recipients. So much joy multiplied.
Wednesday 2 October. A snuggled up in bed day. It is just like winter here in Auckland today - cold, grey, wild and windy. Added to that I have felt unusually tired today. Doing a bit of research reveals that morphine can disrupt the deep sleep wave lengths. That explains why the last few nights I feel as if I haven’t slept deeply even though not wide awake either. I’ll discuss this with hospice nurse due to call or visit tomorrow. I seem to have graduated to only having a weekly hospice nurse check in though of course they always emphasise to call the 24 hr line if anything changes. So much better than being in the busyness of hospital! I’ve got a better appetite today too and feel quite stable. I even did a bit of knitting today! I’m grateful for that as four of my “inner circle” friends are away on holiday for the next two to three weeks.
Thursday 3 October. I have indeed graduated! The nurse today said I am doing so well they could put me on three weeks before next visit. In the end we decided two weeks - just felt nicer! And as always 24/7 phone line for any reason. I said to the nurse “I’m not making this all up am I? I feel as if I’m getting better not worse as the weeks go by!” She assured me I am not making anything up! Now that pain is well managed and I’m in the flow of how and what I can do, I do feel better. But the trajectory of energy, weakness and shakiness is down not up. She said it is common to reach a plateau - a new normal - for a while and then have a dip down to a new, new normal. Anthea and I are certainly enjoying this new normal. It is exactly what we hoped for - quality time together. So, all you holiday makers, I think I’ll be here when you all get home. Enjoy your well deserved holidays!
Friday 4th October. A tranquil day. Two highlights today. About a year ago one of our friends had a bad run of misfortunes. Long Covid and a car accident being two of them. Finally she is well enough to be out and about and I am well enough to have a visitor! She and her niece, and Anthea and, I enjoyed morning tea together here in our apartment. Such a special time. Of course it probably is the last time we’ll be together, so rather bitter-sweet but lovely all the same. Mid afternoon with the sun shining on our deck Anthea and I spontaneously decided to sit outside and have an ice-cream! (Just as well we keep some in the freezer!) Such a simple pleasure - but aren’t they the best kind?
Saturday 5th October. I learnt a new Swedish word recently: ”Dostadning”. It means Spring cleaning with a Swedish twist. The first syllable is the Swedish word for death. So it’s spring cleaning with death in mind - what is worth keeping, what will your family think was worth keeping when they come to sort out your stuff! Fortunately I’ve always been the opposite of a hoarder so it won’t be too hard for me or them. Still it’s a good motivation to keep gradually thinking of who might want certain things and sorting the winter clothes I won’t wear again.
On a totally different topic: I woke up this morning with a Scripture in mind from Philippians 1:21-24. “For me to live is Christ and to die is gain…” The apostle Paul goes on debating - as far as he’s concerned it’s better by far for him to die now, but maybe there’s a reason to stay in this life a bit longer. I get that. When we were told early on that the prognosis was more likely to be weeks not months it made the time remaining seem very short. But now as I am feeling so much better I’m starting to wonder if it’s longer than I imagined. Am I pleased? I honestly don’t know. Either way is fine with me. I’m certainly enjoying each day to the full and living “one day at a time”. That’s all I am asked to do.
Sunday 6th October. With the wonders of the internet I feel I’ve been connected around the world today! I’ve been looking at pictures of one niece’s trip to South Africa, chatting to another niece in Queensland, cheering on my sister and law and her friend setting out on the Queen Charlotte Sound great walk, checking in on the weather in Taupo… and of course “going to church” on Zoom. I’m really glad I’ve kept up pretty well with using Messenger video, WhatsApp, FaceTime, Zoom, Skype, and plain old texting. It’s remembering who called on which app that gets tricky sometimes! I do feel my brain slowing down and things taking longer to “click in” but then I’m not really in a rush these days! Anthea and I were reflecting on how we both remember living in a house with a party line, crank handle phone hanging on the wall in the hall!I even remember the phone number 827Z! I wonder what means of communication will be the norm in even ten years time from now?
Monday 7th October. Still processing this plateau time. It’s kind of disconcerting to be feeling so well. This afternoon the sun was shining and I spontaneously said, “Let’s jump in the car and go and look at the beach.” So we did! See facebook photos! I felt a bit like a naughty girl escaping from boarding school. We sat on “our seat” and talked about what it would be like if I really was “getting better” and not just on a lovely plateau. I know one or two people have been praying for a miracle (ie complete healing).
That’s not the framework I’m in. Every day is a miracle just as it is. But the question remains for each of us. What would it be like to contemplate getting back to “normal” health and picking up the reins of life. Having come this far I think I would find it hard to accept re-entering the roles and responsibilities I had just over a month ago. My focus is on the Life to come not the one I’ve left. But if it were to be so, I think I would accept that there was a divine purpose in not leaving yet. Anthea said that for her it would in some ways be lovely to plan again for the things we wanted to do and the places we wanted to go. But she would be aware that I’d have to circle back and travel the dying journey all over again - probably dying from something else. She wouldn’t wish that on me as she can see how much I am looking forward to what awaits me. How grateful we are to be able to have this kind of conversation.
Tuesday 8th October. A quiet day at home today. After our beach trip yesterday it was nice to have a quiet day today. The big event of the day was Anthea selling her car to the wife of a good friend of ours. Perfect timing on both sides. Once again it is lovely to see how things work out smoothly.
I think it was this week we were booked to go to Wellington for the WOW (World of Wearable Arts) festival and some other Wellington side trips. It has certainly been a year of cancelling plans. However, someone who has already been to WOW this year told us that it has become so technical and almost ‘over the top’ moving away from the original focus of turning used things into works of beauty. So we actually don’t feel as disappointed as we thought we might. The sun dappling the leaves of the tree outside the window. The changing shape of clouds in the evening sky. Simple pleasures, natural beauty … more our style.
Wednesday 9th October. Contentment- yes that’s the word that sums up this day. This morning a relaxed visit from a friend I’ve made since being in the village. She brought us a coffee from the village cafe and we chatted about life in general and about books - book club in particular. We were running the book club here together until I had to abandon her! (She is well able to cope without me but it’s nice on both sides to have a debrief after the event). This afternoon mostly resting on my bed - a bit of reading, quite a bit of dozing and enjoying the view from my window without having to move. Then Anthea and I met for our daily meditation together at about 5pm. We’ve been doing this for many years now. There are lots of ways to meditate. Since Cynthia Bourgeault’s retreats here in NZ many years ago we have been using Centering Prayer as our entry point into that deep silence where names, categories and “methods” are not really the point. The evening is still ahead to unfold after a very contented day.
Thursday 10th October. A beauty-full day. “A thing of beauty is a joy forever” says John Keats. I agree.I’ve often noticed that I am deeply moved by beauty. Some of my earliest memories are of being emotionally stirred in ways I could not explain in words. This was often while on family holidays on Ponui Island. Perhaps that un-nameable feeling was joy. Today I was welcomed with the beautiful sound of the birds’ dawn chorus at 5.30am. Not long after that I watched the dawn light gradually become sunlight. Colours deepening and revealing the day. This morning we drove to the local Art Centre where there is an exhibition of exquisite Japanese pottery. Part of what it demonstrates is how things once made for utilitarian use have become an art form. Yakashimi - Earth Metamorphosis. Such a privilege to have the one and only NZ venue for this exhibition right here in Orewa. And I’m so grateful to have the opportunity and energy to see it. Back home, a beautiful red rose from a neighbour’s garden takes its unassuming place on the coffee table - just being itself - bringing me joy. Later lying on my bed with beautiful music playing. I am abundantly blessed by beauty… and it’s only 4.30pm!
Friday 11th October. Emerging. I’ve felt tired and unmotivated today. Some days if I’m not actively doing something I fall asleep. That’s normal enough for where I’m at but not pleasant. So about 4pm I decided to go for a walk round the grounds to admire the variety of colourful flowers so well tended in our grounds. I wanted Anthea to come with me for both physical and moral support. I’m a bit wobbly and off balance because of not walking much. I’ve also been trying to keep out of sight, not wanting to meet people and having to answer the inevitable “how are you” questions. However, this felt like a divinely timed walk. We immediately met two people from our block who were so pleased to see me and we chatted easily. The flowers were indeed beautiful. Then coming back through reception one of the staff greeted me with a big hug. She had already been very helpful today as we ordered our main meal from the kitchen for the first time. We had just missed Jill the village manager who was on her way over to visit us. So we waited in her office and she came back. We had a lovely time with time her. It was a very mutual conversation. Genuine care for us and willingness to debrief a bit from her side about the challenges of being village manager. We came home feeling blessed once again to live here where staff really do care. I feel much less cautious about being “out and about” in the village if a short walk is a good idea. I am grateful to be emerging!
Saturday 12th October. It was on the 12th of September that the oncologist referred me to Hospice for palliative care. He said the prognosis was probably weeks not months … but he could be wrong! Well four weeks so far. Four amazing weeks of so much to take in. Anthea and I are so grateful for every day and live it to the full - whatever that might mean: “one day at a time”. Today we did another “memory lane” trip to the lake behind our Chesterfield Way house. (See fb photos). We must have walked round that lake hundreds of times during our time living in Orewa. I could walk most of the way round today. It has conveniently placed seats for rest stops! Apart from increasing general weakness I’m still feeling pretty good. The thing that bothers me most is the feeling that my eyes aren’t focusing properly. It’s hard to explain. I call it “tired eyes” which reminds me of one of David Whyte’s poems: Sweet Darkness which begins “When your eyes are tired…”
Like all poems it means what it means to the reader - and maybe that’s different every time. As I read the poem again today, every line speaks but here is the last half:
“ You must learn one thing.
The world is made to be free in .
Give up all other worlds
except the one to which you belong.
Sometimes it takes darkness
And the sweet confinement
of your aloneness
to learn that
anything or anyone
that does not bring you alive
is too small for you.“
Sunday13th October. Dying can take a long time. I remember accompanying my brother and two or three other people as they journeyed towards dying. Sometimes time dragged on and it felt as if they would never die. I woke up this morning feeling impatient. If I have terminal cancer - which I do - that means I am dying of cancer as opposed to living with cancer. So let’s get on with it! I was surprised at the strength of my impatience. Yesterday I was celebrating a lovely plateau time, today it felt like a cul de sac. What was being triggered here? It didn’t take long to identify an old script: “Don’t be a nuisance.” Subconsciously I was replaying a childhood fear that because I was unwell a lot (childhood bronchitis) I must be causing a lot of extra stress for mum and dad and therefore “being a nuisance.” Not that mum or dad ever did or said anything that remotely supported that idea. But here was the old script popping up and telling me to hurry up and get on with this dying process so I won’t be a nuisance to all the people here and now who care for, and about, me. Identifying the subconscious message was very helpful. Talking about it with Anthea was helpful too. So now at the end of this day I am back to current reality. I don’t know how long this journey is. It might be a lot longer than any of us thought at first. That “weeks not months” prognosis is hard to shake. But then there are 52 weeks in a year so it is rather meaningless, anyway! My dying journey will take as long as it takes.
One of the many thoughtful cards I received early on featured this quote:
“Let me do nothing when I have nothing to do,
become untroubled in this depth of peace
like the evening at the seashore
when the water is silent.” Rabindranath Tagore
Yes!
Monday 14th October. Sleep - or lack of - is the main feature today. I’m not sleeping well at night. I’m usually awake by 4 or 5am and can only drift in and out of light sleep from then on. That definitely doesn’t set me up for the day. I’ll take a sleeping pill tonight but I know that gives me a hangover feeling the next day. So it’s a bit damned if you do, damned if you don’t. Maybe this is par for the course at this stage but it’s a pity as I’m just beginning to have space to have some visitors. Today one of my visitors changed the sheets on my bed after we’d had a cup of tea and a good chat. I have no hesitation in asking for help as I get weaker and I know people really like to be able to do something practically useful. It’s fun too to discover something I no longer need that this visitor was delighted to take off my hands - my Nordic Walking Sticks! I gave her a five minute tutorial and left her to look up YouTube videos to get the technique right! Later one of the several people who have been away on holiday popped in and shared photos of adventures on bike trails round Waikato. We live in a beautiful country!
Tuesday 15th October Yay for sleeping pills! I took half a one and had 6.5 hours of deep sleep. It made all the difference to this day. I didn’t really even have much of a hangover. It’s been a lovely balanced kind of day. I started out ticking a few things off my “things to do on the computer” list. Then one of my oldest friends came for morning tea and a chat. We first met at Auckland Teachers’ College in 1963 and have remained friends ever since. Our paths have diverged but criss-crossed and now come back together in the context of Ponsonby Baptist Church (PBC). That’s 60 years of friendship! After lunch and a nap a more recent friend called in. This is someone I have only known in the context of PBC but still a friendship of more than a decade. True friendship is something to be deeply valued and I am blessed and grateful to have many such friends. Length of time is certainly not the deciding factor. Depth of mutually “knowing and being known” is a key I think.
Wednesday 16th October. A happily mixed bag today - a coffee out, a beach walk, another long term friend visiting, learning a new stitch for sewing up the cot blanket I’ve knitted! But best of all someone dear to me but not geographically close by, has written me a song about our special connection over all the years of her life and especially the adult years. I cried as I listened to the song. This is the best gift she could give me. A beautiful and tender end to a happy day.
Thursday 17th October. A hospice nurse visited today after a two week break. I had a few things to discuss and it is good to have someone who is focused on symptom management as well as just wanting to “see how I’m doing”. My main issue is the feeling that my eyes aren’t functioning as they should. Hard to describe exactly but quite tiring and disconcerting. I also wanted to know if my shaky hands are a side effect of any medication. After going back to discuss this with the hospice doctor the nurse rang back to say that it’s could be my thyroid and/or my heart medication out of whack as both of these can cause visual disturbances and tremor. So an at home blood test has been ordered. Such careful, quick action. (At least I hope the blood test will happen soon.) Now that I know there might be a solution I’m very keen to get it! I am once again so very grateful to be under hospice care. Apparently people under hospice care tend to live longer than those in the general system. Not surprisingly!
Friday 18th October. Living fully while dying… it’s interesting that for both Anthea and me there seems to be a slight change of focus today. Anthea needs a break from constantly telling each person she meets how I am. It’s tiring recounting the same things over and over. Today neither of us have any visitors or appointments. We laughingly say we may as well live like we are in a five star hotel and make the best use of everything on offer. So today I had a really lovely haircut here at the village. I felt as if I should be going out on a special occasion! The hairdresser here is a lovely person so suited to giving much more than just a haircut. We chatted about books and she gave my hair a slightly new style. She also told me her mother-in-law had pancreatic cancer but unexpectedly lived for a year! I’m not sure how I felt about that! But in a way it fits with our focus on living as fully as possible for however long it turns out to be.
Then we had a delicious midday meal delivered to our apartment. The menu here really is like a restaurant or hotel. At least three choices of main meal at midday and a a couple of choices for a light meal at about 5pm. We pay for these meals of course but they are very reasonable. We won’t order them every day but just a couple of times a week makes for a nice treat. I am extremely grateful that even though my primary cancer is oesophageal I can still eat and enjoy food at this stage.
On a more mundane note I have a skin cancer growing on my chest in the same site as I had one removed not long before my diagnosis. Is it worth doing anything about it?? My GP is away for another week or two but I guess I’ll ring and ask him when he comes back. Strange decisions to make.
Saturday 19th October. Writing this at 4.30 on a mellow sunny afternoon. We’ve just been for a walk part way round the grounds. We are so grateful for how beautifully the gardens are kept here. There is always something colourful and beautiful to enjoy. I’m definitely getting weaker but still able to go for short walks with Anthea beside me. The other good thing about our grounds is that there are numerous seats at vantage points designed for a rest as well as a pretty garden or fountain view. I want to make the effort to walk every day until I really can’t. Choosing to make the effort and accepting what isn’t possible any more is the ongoing reality. But that’s okay. I’m at peace with my limitations and grateful for what is still possible.
Sunday 20th October. No one really knows what actually happens at the moment of death and all the “moments” afterwards. Is there “time”? Or is time a factor of our lived experience? I was listening to some of Thomas Merton’s reflections earlier today. His view is that at death we “disappear into God” where all things become one. This means no dualistic relationship. You can’t relate to something you are intrinsically part of. I pondered this idea when my brother Andrew was dying. He liked the thought that death was disappearing into God. I found that comforting too. Having read many books about near death experiences it seems that those people definitely had interactions with others - people they knew and spiritual figures. So for them it was still a dualistic relational experience. But of course they didn’t “stay dead”! My ponderings led me to read Jesus’s prayer in John 17 again. Jesus clearly wants his followers to experience “being one” with him as he is with the Father (John 17:21). His prayer seems to relate to the oneness of his followers before death “so that the world may know that you sent me and have loved them even as you have loved me.” (17:23). Whatever the reality of what happens after death, Jesus’ desire for his followers to demonstrate some level of oneness here and now is clear. That is a big enough challenge!
Monday 21 October. Dying can be boring! Sometimes it feels a bit like marking time for no specific outcome. Today was a bit like that. I did some nice things - finished some knitting, did a bit of a jigsaw we have up, sat by the sea and enjoyed the fresh air and a short walk… tried unsuccessfully to find an audiobook or even a podcast that really captured my attention… but nothing really stuck. I need audiobooks at the moment because my eye issue makes reading harder. My own research suggests that it is my main heart medication that is causing the eye issue. (And the blood test that was supposed to have been ordered didn’t happen today.) My own GP is away until November so it’s hard to make any progress there. So nothing really awful about the day - just a bit boring!
Tuesday 22nd October. Definitely not a boring day today! Rather, an empowering day. I woke up with a plan. It seems there are various parts of my body not directly related to the cancer that are niggling - my eyes, my left foot which seems to have developed what I suspect is plantar fasciitis from not wearing my usual supportive shoes, the skin cancer I mentioned yesterday… So I decided to take some action. I’ve borrowed a walker from here in the village supply. This means I can walk without putting so much weight on that foot. I’ve made an appointment with a different GP at our medical centre instead of waiting for my regular GP to be back. I have a list of these relatively small things I want to ask about. It feels empowering to have taken responsibility in these ways.
My energy today was good enough to go out for lunch with a friend to celebrate her upcoming birthday. We both thought I wouldn’t still be here by now so we’d celebrated it earlier! It was almost surreal to be sitting in a cafe looking like a perfectly normal couple of friends out for lunch. I get tired quite quickly though, so back home for a restful afternoon. I come back to the Tagore quote I included a week ago.
Let me do nothing when I have nothing to do,
become untroubled in this depth of peace
like the evening at the seashore
when the water is silent.” Rabindranath Tagore
I think I still have something to learn about being untroubled when I have nothing to do. Perhaps I am still subtly hooked into having to prove myself by “doing” or “achieving” something. Maybe that’s a pondering for another day.
Wednesday 23rd October. I’ve felt pretty bushed all day today. The humidity and heavy grey cloud doesn’t help. I was scheduled to go out for lunch with a friend - and did do this. However, I felt my brain wasn’t functioning! We had a good hour together though at a place we used to go quite often. So we went there for “old times sake”. I think I probably expected a bit too much of myself today. Came home and have spent the rest of the day dozing.
Thursday 24th October. Wu wei - a Japanese word and concept that means “effortless action” or “going with the flow. I’ve known this word for quite a while but it popped up again in something I’m reading. It goes with the Tagore quote I keep coming back to: “Let me do nothing when I have nothing to do…” I sense that this is the next stage I’m gradually moving into. It feels gentle and good. I’m writing this blog update early in the day so we’ll see what I have to add later!
Writing now at 5.30. I’ve had a very satisfying day. The GP I saw because my regular GP is away was really lovely. He listened carefully and compassionately,, dealt with everything I wanted to discuss and then didn’t charge me anything! How kind! My lawyer was on the ball today too. She has sent out information to all the people and charities I am leaving money to so they can now receive those gifts. It does feel good to have that in action. The rest of the day I’ve rested, listened to an audio book and generally been very “wu wei”!
Friday 25th October. Something has changed today. I’m not sure what but a definite shift. The morning seemed the same as usual. I had a visitor and my lunch was delivered. But from then on I just couldn’t keep my eyes open. So all afternoon sleeping with a sense of such fatigue that everything was/is an effort. I have read about the shift from tiredness to fatigue and I think this is probably it. It is par for the course I think and probably a good thing. I said only this morning “let’s get this show on the road”! I did have a blood test this afternoon and my bequests to family members and charities are underway now too.
Saturday 26th October. Surrender = contentment. I woke up this morning after a better than usual sleep. The utter fatigue of yesterday seemed to have gone too. At first I was a bit disappointed - sometimes this journey feels very long - here I am again, another day. Then I remembered my trusty three statement mantra: let everything go, let everything be exactly as it is and turn towards your peace. Surrender, acceptance, peace. As soon as I re-oriented myself to surrender to it being completely beyond my control how long this journey is I found myself relaxing into a deep contentment which has remained all day. Knitting, resting, doing nothing, noticing the sound of the wind in the trees, appreciating the colour of newly planted pot plants… I’m grateful.
Sunday 27th October. Definitely a day of two halves. A lovely sunny morning so we took my walker in the car for the first time and I enjoyed a walk along the path above the beach. Midday meal delivered and delicious. Then a brief video call with my sister in Queensland. But this afternoon it is as if someone has pulled the plug out. That fatigue has hit again. Fortunately I don’t have to do anything except the absolute essentials. (I’m counting writing this blog as one of those!) Here’s hoping tomorrow will be better. Here’s a lovely quote that came my way today: “He who binds to himself a joy, doth the winged life destroy, but he who kisses the joy as it flies, lives in eternity’s sunrise.” William Blake. I’ll kiss every joy as it flies…
Monday 28th October. It was 27th August that I had the gastroscopy that diagnosed the esophageal tumour. Two months ago. I’m curious to know what is happening within my body. I have no sense of any of the tumour locations growing. I’m grateful for that - especially in the esophagus. I can still eat almost normally. The only way to know what is going on would be another full body CT scan and I certainly won’t be having one of those. Hospice palliative care is about symptom management not recovery. Morphine keeps any pain at bay and it seems to be side effects of other unrelated medication that cause the most problem. (Still the vision distortion.) Of course I am getting weaker but can still enjoy a lot of things.
I have recently read two people’s accounts of their journey with cancer. In one case the writer was still undergoing treatment after three years and determined to live life to the full on the days between treatments. He was married with school age children. The other was diagnosed at age 82 and decided to have no treatment. His writing was mainly prayers written in the early hours of the morning. He was often feeling depressed but holding onto his faith and the love and support of his wife. I am interested in how different each person’s journey is. Reading these two accounts makes me grateful for my unique journey and the 79 years of life I have lived to this point. It is still “one day at a time” as I said on day one!
Tuesday 29th October. “…he who kisses joy as it flies, lives in eternity’s sunrise.”
This morning I “ kissed joy as it flies” as we spotted five ducklings while taking a short walk by the lake! This afternoon more joy as the gifts I have been making now (instead of leaving in my will) have started to be received so it’s lovely to share in the responses.
Wednesday 30 October. Today I listened to a one hour Shift Network (theshiftnetwork.com) session “Embracing the Journey of Life and Death”. I thought it would be interesting to see if it covered similar or different issues to my own journey. The presenter was a Death Doula who in her earlier life had been terrified of death and her own dying. Needless to say this had changed so that now she accompanies many people on their journey to death. She has a lovely poetic and gentle way of talking about the issues. I found so much in common with her. Some of the quotes I quickly noted: “Death has taught me about gratitude and presence.” Not being afraid to walk the journey towards death teaches us ”how to live, how to love and how to die.” And finally: “Death is setting the soul free to live in its glory.” I’d say a big yes to all of those perspectives. I feel so privileged to to have lived a life that has enabled me to face death as a transition into being free to let my soul live in its fullness. As Jesus said: “I have come that they might have life, life in all its fullness.” John 10:10. I guess we generally don’t think of that fullness as including death and the Life beyond but I’m sure it does!
Thursday 31st October. A useful visit from Hospice nurse this morning. Both Anthea and I have felt weary today. It feels like a long journey. I haven’t been out of the apartment yesterday or today and spent quite a bit of the day in bed. The nurse commented on how “not knowing when” is a commonly stressful time. She also said that my actual cancer symptoms may not get worse but my body systems will gradually decline as time goes by. I found that quite reassuring. Even though we both want the journey to be over it is still strange to think this may be the beginning of the final stage of the “pregnancy to the next stage of Life”. And of course to tomorrow I may say I’ve bounced back! One day at a time!
Friday 1st November. I love it when meaningful quotes or poems just pop up … often quite randomly on Facebook. This morning it was this from Mary Oliver “it is a serious thing just to be alive on this fresh morning in the broken world.” It certainly does seem to be a broken world. I’m not sure how my own being alive contributes in a serious way to that but I’ll trust that it does. It was very pleasant to spend time in my outdoor chair this afternoon - my peace chair. I felt kind of sad though. Not sad about anything specific, just sad. Maybe sad about this broken world, maybe sad at what feels a rather pointless extension of being alive. I listened to a meditation on change which ended by inviting me to trust that change is happening for me - not to me. Okay that does make a difference. One day at a time.
Saturday 2nd November. Wanted to make the effort to get out of the apartment today. We drove to the Art Centre for morning coffee - the first time I’ve been out for a coffee for several days. We really like the coffee from our own cafe so it’s easier for Anthea to go over and get a takeaway from there. But still, it was good to have a change of scenery. Now that we can take my walker in the car (Anthea has christened it it my Pony!) we can go for a walk as well. With a couple of rest stops it was nice to see the estuary and the beach. 2,000 steps - not bad! There’s a balance between making the effort and pushing myself too hard. The rest of the day was rest and recover mode. Nothing special to report.
Sunday 3rd November. I started out with all sorts of possible plans for the day. I usually wake up feeling pretty good and optimistic. However, at about 10am I was suddenly overtaken by a very intense bout of pain. I haven’t had any pain for so long it was a shock. Anthea was on a phone call so I managed to find my short acting morphine pills and get one down. Then it was breathing through the next 20 minutes of 9/10 pain until it finally settled. I have no idea what brought that on but it certainly reminded me that I can’t count on never having any pain. It is Sunday so later in the day I watched our church service on YouTube. During Free for All (the community sharing time) two other people spoke of people close to them (and therefore us as a community) having cancer. It feels almost like an epidemic - though of course cancer is a very common and multifaceted disease across all of society. But still - a rather strange and sobering day. Right now the evening sun is shining as I reflect on this particular “one day at a time”.
Monday 4th November. I want to thank all of you who are following my Blog. It makes this a less lonely journey - especially as it is a longer journey than I expected. It somehow feels comforting to know that others know the day-by-day-ness of it.
It was nice this morning to have two of my exercise class buddies come over with a coffee. It gave a focus for the morning. I spent the afternoon in bed but made the effort to get up and go out late afternoon to sit in the car by the beach. Anthea is my wonderful encourager and chauffeur. Late afternoon is my more easily “down” time so it’s good to get out and breathe the sea air and get a different perspective.
Tuesday 5th November. I take my hat off yet again to Hospice and the level of care they give. I’m being weaned off some medication and this afternoon was feeling very unsettled with some changes so I decided to phone and discuss with one of the nurses. After several phone calls and the nurse discussing with one of the doctors they prescribed a different medication which was sent to the pharmacy and Anthea picked it up late this afternoon. I’m amazed and grateful that it was taken on board so carefully and actioned so quickly.
Wednesday 6th November. Coming back to acceptance. I’ve had a few days of feeling quite down about how tedious and drawn out this time feels. In one way I suppose ten weeks since diagnosis isn’t really all that long. It just feels long as each new month ticks over. But today I have decided that I need to re-establish (yet again!) my surrender, acceptance practice which does lead to a more peaceful place. It really doesn’t look as if I’m going to die any time soon so I want to look at each day as a day to live meaningfully. It’s not so much about “What is the purpose of this time?” as if there’s a “lesson to be learned”, or something to “be achieved”. Rather it is to find meaning in whatever each day holds. It’s a version of living mindfully I suppose. There’s something quite subtle but important for me in accepting my current cancer journey as more like a chronic illness than a quickly terminal prognosis. And of course I could be wrong! But whether right or wrong - acceptance of each day just as it is and choosing to find meaning in however I spend it is the challenge.
Thursday 7th November. I’m finding it hard to keep awake today. It’s what I think of as a “rag doll” day. However, the sun was shining this morning so I made the effort to see if I could walk as far as the fountain with my “Pony” and with Anthea beside me. It was satisfying to make it and to enjoy sitting there with the sun, the water, the flowers… one of the gardeners took a photo to mark the occasion! I listened to a session from “Turning to the Mystics” with Jim Finlay from the Centre for Action and Contemplation this afternoon. I’m not sure how much went in but it’s a good series.
And I’ve just received this excellent quote from one of you Blog readers - thank you!
Accept what is
Let go of what was
And have faith in what will be.
Friday 8th November. Another “rag doll” day. I really, really hate the feeling of struggling to keep my eyes open even though I had a very good night’s sleep and in other ways have energy and interest in the day. I still enjoyed my visitor this morning. It is good to have long term friends to catch up with. But after that I spent time between this utter lethargy and reading an excellent book “Amphibious Soul” by Craig Foster. Some time ago we watched “My Octopus Teacher” on Netflix. It features the same Craig Foster. I highly recommend both the film and the book. Definitely meaningful reading. I just wish I could manage more than a few paragraphs before falling asleep! In one of the few intermittent patches of sun this afternoon I made the effort to get out of bed and Anthea and I drove to the shops, had a brief walk along the path at the top of the beach (with my Pony!) and then sat at Movenpick for an ice-cream. A pretty good day - that would have been even better without the utter fatigue that is really hard to describe.
Saturday 9th November. It looks as if it’s swings and roundabouts with side effects of medication. My enthusiasm about the medication being changed a few days ago is now tempered with the fact that the new medication seems to be what is causing the utter fatigue. So now I’m off both and hoping for the best! It has been a less fatigued day I’m glad to say but I find it so hard to keep positive as the day wears on. I think I suffer from the “sundowner” thing I’ve heard of affecting people with dementia. It’s that patch between 4pm and 6pm which seems to drag endlessly on. Today I watched an episode of Taskmaster for some light relief. I’ve never watched it before but it gave me a few laughs.
Sunday 10th November. Today’s quote: “Whatever the present moment contains, accept it as if you had chosen it.” Eckhart Tolle This quote popped up at the beginning of our meditation session at 5pm. How appropriate! Variations on the same theme being repeated. Surrender, acceptance, trust, choice.
I wasn’t sure if I had the energy for a walk today but pushed though the reluctance as I do know that my back is suffering from spending so much time sitting or lying down. As usual I am really glad I did make the effort. We drove to one of the spots where there is a walkway above the beach and my faithful Pony enabled me to walk further than I thought to a convenient seat and back. I definitely felt better for it.
Most of the rest of the day in bed reading a murder mystery and sleeping. A spontaneous visit from my niece and husband late afternoon was another really positive time. So I’m grateful for a lot of things today. Most of all I’m abundantly grateful that Anthea is my loving and faithful carer.
Monday 11th November. I kind of “hit the wall” today. This was triggered by discussing with a good friend, who I have asked to speak at my funeral, the fact that he may not be in NZ unless the funeral is in the next two weeks or else mid January. It feels overwhelming to have an expanse of days stretching out which often feel quite pointless. Anthea was having a “down day” today too - trying to enjoy doing alone things we always used to do together - but not yet able to grieve fully. So we shared our tears and sense of “this is all too hard”. I think sharing the low points allows some space for finding some perspective. I’m still working on that … Thinking about the quote that popped up yesterday “Whatever the present moment contains accept it as if you had chosen it.” It’s really hard to imagine choosing “an expanse of days stretching out…” but maybe I can choose ‘one day at a time’ and choose to live in just that one day (hour by hour!). That was/is the message of Eckhart Tolle’s book The Power of Now which I read decades ago. At least by mid-afternoon today I felt like having a coffee and Anthea went and got us both one from the cafe here in the village. That’s a start!
Tuesday 12th November. A very different day from yesterday! It’s good to remember how different each day can be. It was a beautiful sunny day and Anthea had a plan! We drove to one of the boat ramps so that I could use my walker to get down onto the beach itself. It was low tide so plenty of hard sand to walk on. It was a “breath of fresh air” literally and metaphorically. After that we went to one of our favourite cafes and sat in the sun outside for morning tea. The couple who own the cafe have become like friends and each of them came out and gave me a hug.
Part of what motivated me to enjoy all of the above was once again coming back to “let everything be just as it is”. I realised yesterday that I have been resisting the thought of more and more days of life to fill. What that boils down to is resisting life “just as it is” right now. Resisting life…! Maybe many people approaching death try to resist death - to somehow keep it at bay as long as possible. I, on the other hand, was resisting life in its current form. Once I saw that I realised how self defeating that is. I will live for however long it turns out to be. I can either resist that and reduce my enjoyment of what is possible each day, or I can accept each day and fully give myself to enjoying what is still possible. That’s obviously the better choice. So once again - “one day at a time” my aim is not only accept life just as it is each day but to gratefully enjoy what is still possible rather than taint it with resistance. Of course I don’t expect every day to be as lovely as today has been. There will no doubt be usual ups and downs of any life but that is reality too.
Wednesday 13th November. A grey, wet day today. Sometimes I think weather and mood affect each other more than we expect. I certainly know that humidity affects my breathing and saps my energy. So I’m glad that today I could go with what my body needed and spend a good bit of time in bed. I also watched a very inspiring Netflix documentary on Shackleton’s attempt to cross Antarctica. “Shackleton: The Greatest Story of Survival”. His leadership skills certainly saved all 28 men. Even though they didn’t achieve their initial goal he “re-shaped their mission” so that instead of the return journey marking a failure, it became success at the new mission of bringing everyone back safely. So many life lessons demonstrated by this remarkable man.
Thursday 14th November. Updating a bit earlier than usual today as a lot has been happening already. I woke up noticing pain when I breathed deeply. I rang hospice nurse who after careful listening suggested I call ambulance as they could assess what might be causing this. The ambulance was there in five minutes! They had been having coffee down the road! Two lovely men stayed for about 90 minutes doing a range of tests. They verified it is not heart related which is very good. It is most likely fluid build up in the pleural cavity around the left lung. I could go to hospital and have a scan and fluid drained but have chosen not to go that route. Just pain relief and comfort care are in my long term plan so I’m sticking with that. The ambo paramedics gave me various pain relief medications and phoned hospice to report and discuss. Once again how blessed I feel to have such care right here at home. Then this afternoon my GP phoned as he had just had the report from paramedics. I appreciated that although I don’t think I will need his help as well. Then just now (3pm) a hospice nurse phoned to see how I am and check if I feel okay about going into evening and night. I do feel quite peaceful and surrounded by various levels of care. And of course my wonderful primary carer and much loved friend Anthea is here beside me day and night. I certainly couldn’t do this without her.
One rather amusing spin off of all this is that I have had to get good at making phone calls asking for help or advice. I’ve always been averse to phone conversations - part of the old “don’t be a nuisance” script! I’ve had nothing but warm affirming responses every time I’ve phoned hospice and even the ambulance crew reinforced “don’t hesitate, call us any time”. Very grateful.
Friday 15th November. How quickly the weather changes! It’s been raining heavily most of the day. Then quite suddenly the rain stopped and the sky cleared. I’m talking about the actual weather - but reminded that the same is often true emotionally. I woke this morning with no pain. That has continued to be the case all day. So who knows what yesterday’s saga was about? Once again I’m having to choose to accept and surrender. As most blog readers by now will understand this means accept that I’m still here and surrender to life as it is right now. I was talking to someone this afternoon about a mutual friend who has Alzheimers. In a way this is a terminal diagnosis too. Our friend feels that life now has little purpose. Of course over many years she has lived a wonderfully fruitful life of service in many ways but right now the time ahead feels empty. I’m choosing to turn towards acceptance, surrender and peace but it is a daily choice - and like the weather can change several times within a day. We all live with a terminal diagnosis - life itself! But most of the time we assume we have at least some level of control. I take inspiration from the many, many people who live from a relatively young age with quadriplegia or other conditions which severely limit their control. I have been blessed with more than my “three score years and ten” (Psalm 90:10 KJV) and the time ahead is definitely shorter than that! So once again at this end of today - course correction accept, surrender!
Saturday 16th November. An example today of how a “bad thing” can turn into a “good thing”. I felt really unwell all morning - nauseated and exhausted. I took all the appropriate medications I could and by mid afternoon felt cautiously able to enjoy a coffee. Anthea was so delighted to get me anything that would cheer me up so she immediately trotted over to our cafe. I have oat milk coffee these days, though yesterday they didn’t have any and I discovered I like almond milk just as much. But today the only option was coconut milk - which I discovered I really do not like! It is a beautiful day so we decided to go out for a drive and a decent coffee. I sat in the car while Ant went into one of our favourite cafes. The lovely woman who makes the coffees came out to the car to bring my coffee in person and give me a hug. A lovely highlight on a difficult day. But that’s not all - we parked near the entrance to one of the beach walkways and on Anthea’s arm I managed a short walk to a seat overlooking the beach to drink my coffee. So… a disappointing coconut milk coffee motivated a drive, a heartwarming hug and a very nice coffee in the sunshine with a beach view!
Sunday 17th November. Not a lot to say today. One of those “can’t keep my eyes open” days. However, I accepted that and let it be, so it was okay. I did watch a free Shift Network session with William Bloom “The Art of Dying Well”. Anthea had watched this some time ago and appreciated it. William Bloom is an interesting person and has written on a lot of topics as well as death and dying. There wasn’t a lot that was new (for me) in what he said in this one hour interview but I warmed to his positive and engaging personality. We drove to the beach for a late afternoon coffee and sat in the car at the Surf Club carpark watching kite surfing. Exhilarating to watch!
Monday 18th November. Rang hospice this morning to discuss increased pain when eating over the weekend. As I expected the decision is to increase the dose of 24/7 morphine. I felt relieved to have that plan in place. It’s interesting how feeling relieved also meant I felt up to going out for a while in the beautiful morning. A walk along the estuary at full tide was a dose of beauty - probably just as significant as a dose of morphine! A young teenage lad saw Anthea taking a photo of me and asked if we’d like him to take one of both of us. A thoughtful kind gesture (see fb photos). Later I had a Zoom session booked in with my spiritual director. Also very helpful. So, much to be grateful for at this end of the day.
Tuesday 19 November. A bit of an up and down day - or should I say a down and up day. Woke up feeling less bright than usual and had to make the effort to get dressed and eat breakfast (porridge). I have to say I’m grateful for sleeping well and usually enjoying my porridge and cup of tea. But this morning it was a general malaise and effort. I was immediately back into “can’t keep my eyes open” and feeling generally unwell. I slept on and off for most of the morning and then roused myself to have coffee from our cafe. Anthea made me asparagus rolls ready for lunch while she was out celebrating a friend’s birthday. Surprisingly I perked up and enjoyed my asparagus rolls.. When Ant came home the warm sunny conditions enticed us out to one of the walkways above the beach. Very enjoyable. However, by the time we got back I was in considerable pain in the area of my primary tumour so it was back to an extra short acting morphine and a rest. We’ll see what the evening holds with eating and medication. Things are definitely rather unsettled at present. Of course I want some movement in the direction of an end point but it is so up and down even in the course of one day that it’s hard to predict anything for sure. Certainly accepting “one day at a time” still holds true. Recently in the interview on dying well one quote that stood out was that every religion in the world has a vision of some sort of “ocean of cosmic benevolence” awaiting us. Certainly in this whole journey from day one I have never doubted that. God’s unfailing love has surrounded and undergirded my life since childhood. I have immense gratitude for that and for my mum and dad who lived and modelled it.
Wednesday 20th November. I’ve just posted some photos on Facebook of what we were doing an hour ago. Sitting outside at a cafe having a coffee, then across the road by the beauty of the beach…the external “picture” is true and yet tells only a fraction of the reality. Another equally true “picture” is of intense weariness that means I sleep at the drop of a hat. (Interesting phrase! I sleep at the drop of my phone or my book landing in my lap!) Yet another snapshot is the working of my mind - so many thoughts, questions… I sometimes think it would be nice to be a cat or other animal that lives totally in the present with no way of predicting the future or remembering the past! That sounds rather like “The Power of Now”. Maybe sleeping is the closest I get to that!
Thursday 21st November. First my humble apology to Lucy, my friend’s dog! Lucy wants to be sure I know that although she lives each day in the present moment, she does have memories and anticipates the future. For example (fictional example): Why else would she shy away from big men in dark clothes? Perhaps because she remembers being attacked by such a man - and making sure it doesn’t happen again!
Okay, having got that off my chest … today got off to a bad start. I was so shaky I couldn’t co-ordinate taking my pills or making a phone call. My much-loved and relied-upon Anthea came to the rescue and made the phone call. After a few false starts a Hospice nurse phoned to say she would come round and visit. That was a relief. It seems that the cause of the problem is being weaned off the steroid I’ve been on (not the increased dose of morphine as we had wondered). So it’s back on the lowest possible dose to juggle the benefits with the negative side effects. It will take a day or two to see if this is working. Having Lucy’s “mother” coming to visit gave me another focus for the day! And of course I do know Lucy is right … Deepest apologies to all members of the animal kingdom!
Friday 22nd November. A steadily improving day. Woke up feeling tearful, anxious and depressed. Shaky in body, mind and emotions. One phrase from Psalm 13 on my mind: “How long O Lord…”A hospice nurse phoning to check in was well timed as I could “let everything be as it is”. As always this nurse carefully listened with sympathy and kindness. Then suggested I add an anti-anxiety medication to what I already have. Yes please! Once I would have thought that was something to be avoided or ashamed about. But “Let go of everything includes letting go of my ego’s desire to be self sufficient.” Many decades ago I remember going through a very rough patch for months on end when my only prayer was “God I don’t understand but I trust you,” Right now I can’t even remember what that was about (interesting!) but here it is again - different words but same principle. “Let go… Accept (or at least allow) exactly what is…and turn towards ultimate trust in a God of love. Psalm13:5 “I trust in your unfailing love,,, you have been good to me.” One of the ways God has been good to me is giving me Anthea as a loving friend who is consistently calm in the most stressful times. A calm presence alongside is just as helpful as medical help.
I said it was a steadily improving day. I have the new prescription to take as needed. I have been out in the car with Ant and Pony for a coffee and a visit to “our seat” which since we last looked has disappeared! (See fb photos). Another reminder that nothing is permanent.
Saturday 23rd November. I stayed in bed all day today. A tearful conversation with Anthea first thing about the cumulative stresses and triggers for each of us. We are grateful we can be vulnerable with each other. The rest of the day I slept most of the time. A friend‘s planned visit to me didn’t work out but during that time a hospice nurse called to check in so it was a convenient time to talk. Another small but welcome gift of grace.
Sunday 24 November. Sorry.first day I didn’t write.getting harder to remember what I do and what pills I’ve taken. Stayed in bed all day again. Did watch church onYoutube.
Monday 25th November. Very nice morning with my friend from village. She brought coffee and we had a good time chatting. We used to be partners at TripleA and lead Book Club together. I’m not able to do either of those now. Finding it harder and harder to do anything but sleep. This gave my darling Anthea some time to get a haircut and have morning tea with one of her friends. I’ve been longing and praying for the end to be in sight, now that it feels as if it might be it is very strange. I’d so love to “disappear into God” in my sleep..
Tuesday 26th November. Well here I am - still in this body for another day! Hospice nurse visit suggests that we may be moving into end of life care. I’m finding it harder to remember how to edit blog posts so hope I don’t suddenly go off the air without meaning to. If that happens I guess Facebook and the general “grapevine” will keep people up to date. I’ve had so many ups and downs on this journey that who knows how long the “end of life care” stage will take! The nurse today said it could be “days or weeks”. It seemed to me that’s very similar to when I was told “ weeks or months” three months ago at the original diagnosis so realistically of course no one can predict. “ My times are in Gods hands.”
Wednesday 27th November.
I’ve just had a really lovely visit from the spiritual carer at Hospice.I want to record key points before I lose them. He suggested 1.Dying is like travelling the journey to the cross with Jesus. 2.Dying is like thinking you have reached the top of the mountain only to see a new ridge to climb ahead. 3. Those who die most easily are those who have had a near death experience, 4. those who meditate and pray, 5.those who are open and curious.
Surrendering to travelling the journey to Calvary brings tears to my eyes. I think I’ve been hoping to skip that part and just drift peacefully across.
Vincent retirees at the end of December but said he is very happy to continue to visit me even after that. This is great comfort to me as so many people are going away during the Christmas season. One of the things Vincent (Hospice spiritual carer) said was “surrender”. - well yes, absolutely- that is part of my spiritual practice every day. A reminder to surrender the timing of dying, funeral, people’s holidays etc.
Not long after Vincent had left my GP arrived for a home visit. I didn’t think Doctors did this any more but it was nice to have him check heart, lungs, places where tumours are etc.He didn’t find anything of extra concern and was kind and helpful. Finally after Simon had gone my niece Nicky arrived and we made list of who will be away and when. At the end of this day I feel grateful to have so many people supporting me from different angles and aspects of care.
When I think of Jesus’ journey to the cross I remember that he had no choice about how long it would take or what challenges he would meet on the way. Christmas too, the other end of his life story, not exactly a smooth and joyful celebration … Certainly Mary and Joseph had many experiences of letting go of the ideal, more surrendering to life just as it is, more ways to discover peace. But look what eventuated…
I’m sitting in the sun in my Peace chair on the balcony as I write this. Greatful!
Thursday 28th November. Not sure what I can write today. It’s always lovely to have Jody, pastor and friend visit, then a friend of Ant’s came to sit with me while Ant had a deserved lunch with friends. Sleep ping most of afternoon but not very peacefully. Can’t eat much.maybe better tomorrow. What would i do without Anthea?
Friday29th November. Looks as if it really is end of life care now. Hospice nurse visit suggests moving into hospice bed over weekend with full care for Anthea and me. Probably no bed available till Sunday but that’s Ok. We are both relieved. We assume that I will stay there then but even if I come back here it will only be short term and with extra support here. It is a relief to us both to know the other will be cared for. Thank you to all faithful blog readers who have made it easy to keep up to date. I’m sure the grapevine, NZ Herald and general networks will work. Love and peace till I see you all again held in God’s unconditional love.
PS have just heard I’m moving to Hospice tomorrow 30th at 1pm.
Saturday 30th November. Well I’m here in hospice and it’s only Saturday but all is is not as it seems.. I’m here in a beautiful room with a lovely doctor on the Conway side of the family. After a very careful assessment Heidi (doctor)thinks we need to wait for a week to determine whether I’m on the trajectory towards death or not. Hospice usually only keeps people in for week so it feels a bit depressingly back to where I started. Heidi does understand that I don’t want to go back to Evelyn Page and start all over again but I guess we just have to see. Understandably very tired. One day at time!
Sunday 1Dec.
Just letting you know that at the moment Sheila is unable to respond to any messages or emails.
If urgent you can communicate with me, Anthea, at anthea181@gmail.com.
Thursday December 12th
Hi, everyone. Just to update you. (Sheila here again) Just to explain why it’s back to me again. it has been a hard few days is still hard to write with shaky hands and a brain that seems to refuse to connect. But I’ll try. Hospice drs decided I am not on the trajectory towards death and therefore have to leave the bed for someone who is. This is is a shock especially as private hospital beds are so hard to come by. It feels if I’m going backwards not forwards. I am now in Maygrove private hospital. It it a a very well regarded hospital so from that point of view I’m grateful. However, I don’t know how long funds will last especially as I was supposed to be dead by now! I honestly have no idea what God is up to. I come back to trusting. That’s the best I can do for now. I do feel very fragile. (I have just been told that the bell can be heard through all the three wards here!
December 14th
Just in case there was any misunderstanding from my previous post, I want to assure the recipients of my gift that I have sufficient funds for the foreseeable future.
December 15th
The main difference this may make is that if I take a good bit longer to die then I will be occupying a Maygrove room for some time to come. There is no end point for how long I can stay here. I am eternally grateful to God and to Anthea for providing such supportive and loving companionship as I adjust to yet another shocking change in what I thought this journey was going to look like. Please continue to pray for us both.
